Re: Grave's, preparing for RAI, questions about after

[Guest guest]

Hmmmm...

Do you have copies of your last labs?

I have a thought.... but want to see your numbers.

The docs are referring to your 'being normal' and that you may be on too much med to achieve that.... but you are gaining weight.. which is not impossible when hyper, but not the 'usual'.

Hashi's is the most common diagnosis here, so we're not as knowledgeable with Grave's, I'll say that right up front. So we'll likely be learning with you as we get into more detail.

But my thought... what numbers are they aiming for as 'normal'?

You brought up fluoride... it's best to avoid. It cause a lot of problems with thyroid glands and hormone. We all try to steer clear of it...

You mentioned lymph nodes in your first email.. there is a risk of damage to the lymphatic system when having RAI. With effects showing up as long as 20 years after the RAI was administered. I started having problems in the last year.. Not bad, so far. But I have to keep on top of it.

You're right with surgery be a potential risk for your voice. And, depending on how hyper your system is it may not be an option for you.

How long have you been on meth to control the hyper?

Things that you may want to ask the doc/clinic about after treatment...

What options for medication will you have?

You are looking for them to offer options here. If they simply say Synthroid, or other brand of synthetic and imply that it's 'just one pill a day and you'll be fine' you may want to be looking elsewhere for a doc to follow your treatment. Ideally doc should say something about both synthetics and naturals, suggesting that it will be a trial and error to see what works best for you. For some folks synthetics do the job, for MOST folks it doesn't, but you should be given the choice, and that is the best kind of doc to find.

What will be the schedule for labs after the RAI?

A good doc should have you coming in at the VERY LEAST every 6 to 8 weeks as your dosage is being adjusted and your labs and symptoms monitored. My own doc had me coming in every 2 weeks for the first 6 months, watching for any thyroid function after my RAI and when she was sure that the gland wasn't going to kick in she started me on meds. My situation was a bit different, I went into storm due to a genetic defect in my TSH receptors, so they needed to know if there was any remaining function.

What will the docs goals be as far as the hormone levels?

Here you want to hear three tests mentioned, minimum, TSH, Free T4, and Free T3. After thyroid treatment TSH really doesn't mean much to us at all, the most important will be the Free T4 and Free T3. If the doc says simply TSH, he's not really on top of thyroid care and most likely doesn't know that the most important test are the Frees. Asking if the doc will monitor the frees is okay at this point, he may be willing, if asked. If he flat out says no, here again is the red flag letting you know that you'll be wanting to find another doc.

Personal items..... I'd be nervous and looking for the yellow pages if he brings up weight loss drugs or antidepressants as things that will be used after RAI.

That's what's coming to mind right now. I believe there are also some specifics as to Grave's antibodies following RAI and watching for the antibodies affecting other parts of the body. But I'm having a brain fart and can't remember how that goes.... Can anyone else jump in here???

Back when I had RAI I had to quarantine myself for three days, and was told not to be around kids for five days. I was given instructions on decontamination and such to care for myself. Recently we've had members that were kept in the hospital with the staff taking care of all of this stuff... so I may let them jump in and comment.

You want to keep in mind that you shouldn't be around adults for three days after the treatment and kids for five. Clothing, bedding, eating utensils, anything you touch, wear or hold during that time can become contaminated. I'm not trying to scare you, just want to let you know some of this stuff so that you can be prepared. I wasn't.

You shouldn't get pregnant for at least six months, better a year, after RAI. Although we have someone that did and her baby, last I heard, was just fine. But you need to be aware that there is a possibility of birth defects, due to the radiation, if conception occurs too soon.

The radiation destroys the thyroid gland, causing it to shrivel, it's still there, just no longer alive and working. You're not going to have something sloughing out of your body and, from the outside, your throat won't be sinking in or anything like that. If your gland is enlarged, you have a goiter, that should go away.

After the RAI you will most likely be going hypo. The chances that they will destroy exactly the amount of the gland and that the Grave's won't hyper stimulate it is pretty slim. So they are gonna aim for total ablation and not partial (even if they say otherwise). It's a whole new world and will take some learning, both about how it all works and how your body will be adjusting. We'll help you with that. How hypo affects us is so very different, very individual, for us. So you may not have the exact same symptoms/reactions as others... but you are most likely to find folks that have gone through most of it and will help you to understand, learn and deal with it.

Always remember that we're here. As you prepare for the procedure, as you deal with the adjustments afterwards and learn how to take care of your 'new' body. You don't have to deal with this alone, like so many of us have. Remember.... I had no warning for my RAI... I went in, they dosed me and they sent me home to take care of myself. No one to talk to, no options, nothing... so you're WAY ahead of me.

Oh.. weight... hypos tend to gain weight.. so you're going to be learning more about nutrition and metabolism and helping your body to control, the key thing here, as with most hypo symptoms, is getting your meds correct, getting enough hormone in your system to allow your body to work properly...

Topper ()

On Thu, 31 Mar 2005 05:44:38 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you for getting back to me. The endo's I spoke to--and who recently examined me--felt that they were having to give me too much Methimazole (10mg/Twice a Day) in order to keep me "Normal." I have also had to take Propanalol (20mg/As needed) for my overachieving heartbeat. While they did not bring up surgery, I would have a fit with that option since I am a performer and need my voice. My understanding is that thyroid surgery is delicate and that it can affect the vocal chords.

I have not discussed Armour with the endos, nor has there been any in-depth conversation regarding the post-RAI care. I will contact the clinic to discuss these things, but I would like to have your recommended laundry list of questions to pose to the doctors.

Please note that I have gained considerable amounts of weight this past year, I have suffered from gastritis/indigestion, and have had other symptoms more in tune with hypo. Still, my levels keep coming up high or normal.

Here are my current list of questions: what are the "new guidelines" that have been discussed? How should I prepare for the RAI--foods, fluroide, etc.? What should I expect from the RAI treatment? How do I help my body not put on more weight, lose hair, etc.?

[Guest guest]

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Carolinetopper2@... wrote:

Hmmmm...

Do you have copies of your last labs?

I have a thought.... but want to see your numbers.

The docs are referring to your 'being normal' and that you may be on too much med to achieve that.... but you are gaining weight.. which is not impossible when hyper, but not the 'usual'.

Hashi's is the most common diagnosis here, so we're not as knowledgeable with Grave's, I'll say that right up front. So we'll likely be learning with you as we get into more detail.

But my thought... what numbers are they aiming for as 'normal'?

You brought up fluoride... it's best to avoid. It cause a lot of problems with thyroid glands and hormone. We all try to steer clear of it...

You mentioned lymph nodes in your first email.. there is a risk of damage to the lymphatic system when having RAI. With effects showing up as long as 20 years after the RAI was administered. I started having problems in the last year.. Not bad, so far. But I have to keep on top of it.

You're right with surgery be a potential risk for your voice. And, depending on how hyper your system is it may not be an option for you.

How long have you been on meth to control the hyper?

Things that you may want to ask the doc/clinic about after treatment...

What options for medication will you have?

You are looking for them to offer options here. If they simply say Synthroid, or other brand of synthetic and imply that it's 'just one pill a day and you'll be fine' you may want to be looking elsewhere for a doc to follow your treatment. Ideally doc should say something about both synthetics and naturals, suggesting that it will be a trial and error to see what works best for you. For some folks synthetics do the job, for MOST folks it doesn't, but you should be given the choice, and that is the best kind of doc to find.

What will be the schedule for labs after the RAI?

A good doc should have you coming in at the VERY LEAST every 6 to 8 weeks as your dosage is being adjusted and your labs and symptoms monitored. My own doc had me coming in every 2 weeks for the first 6 months, watching for any thyroid function after my RAI and when she was sure that the gland wasn't going to kick in she started me on meds. My situation was a bit different, I went into storm due to a genetic defect in my TSH receptors, so they needed to know if there was any remaining function.

What will the docs goals be as far as the hormone levels?

Here you want to hear three tests mentioned, minimum, TSH, Free T4, and Free T3. After thyroid treatment TSH really doesn't mean much to us at all, the most important will be the Free T4 and Free T3. If the doc says simply TSH, he's not really on top of thyroid care and most likely doesn't know that the most important test are the Frees. Asking if the doc will monitor the frees is okay at this point, he may be willing, if asked. If he flat out says no, here again is the red flag letting you know that you'll be wanting to find another doc.

Personal items..... I'd be nervous and looking for the yellow pages if he brings up weight loss drugs or antidepressants as things that will be used after RAI.

That's what's coming to mind right now. I believe there are also some specifics as to Grave's antibodies following RAI and watching for the antibodies affecting other parts of the body. But I'm having a brain fart and can't remember how that goes.... Can anyone else jump in here???

Back when I had RAI I had to quarantine myself for three days, and was told not to be around kids for five days. I was given instructions on decontamination and such to care for myself. Recently we've had members that were kept in the hospital with the staff taking care of all of this stuff... so I may let them jump in and comment.

You want to keep in mind that you shouldn't be around adults for three days after the treatment and kids for five. Clothing, bedding, eating utensils, anything you touch, wear or hold during that time can become contaminated. I'm not trying to scare you, just want to let you know some of this stuff so that you can be prepared. I wasn't.

You shouldn't get pregnant for at least six months, better a year, after RAI. Although we have someone that did and her baby, last I heard, was just fine. But you need to be aware that there is a possibility of birth defects, due to the radiation, if conception occurs too soon.

The radiation destroys the thyroid gland, causing it to shrivel, it's still there, just no longer alive and working. You're not going to have something sloughing out of your body and, from the outside, your throat won't be sinking in or anything like that. If your gland is enlarged, you have a goiter, that should go away.

After the RAI you will most likely be going hypo. The chances that they will destroy exactly the amount of the gland and that the Grave's won't hyper stimulate it is pretty slim. So they are gonna aim for total ablation and not partial (even if they say otherwise). It's a whole new world and will take some learning, both about how it all works and how your body will be adjusting. We'll help you with that. How hypo affects us is so very different, very individual, for us. So you may not have the exact same symptoms/reactions as others... but you are most likely to find folks that have gone through most of it and will help you to understand, learn and deal with it.

Always remember that we're here. As you prepare for the procedure, as you deal with the adjustments afterwards and learn how to take care of your 'new' body. You don't have to deal with this alone, like so many of us have. Remember.... I had no warning for my RAI... I went in, they dosed me and they sent me home to take care of myself. No one to talk to, no options, nothing... so you're WAY ahead of me.

Oh.. weight... hypos tend to gain weight.. so you're going to be learning more about nutrition and metabolism and helping your body to control, the key thing here, as with most hypo symptoms, is getting your meds correct, getting enough hormone in your system to allow your body to work properly...

Topper ()

On Thu, 31 Mar 2005 05:44:38 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you for getting back to me. The endo's I spoke to--and who recently examined me--felt that they were having to give me too much Methimazole (10mg/Twice a Day) in order to keep me "Normal." I have also had to take Propanalol (20mg/As needed) for my overachieving heartbeat. While they did not bring up surgery, I would have a fit with that option since I am a performer and need my voice. My understanding is that thyroid surgery is delicate and that it can affect the vocal chords.

I have not discussed Armour with the endos, nor has there been any in-depth conversation regarding the post-RAI care. I will contact the clinic to discuss these things, but I would like to have your recommended laundry list of questions to pose to the doctors.

Please note that I have gained considerable amounts of weight this past year, I have suffered from gastritis/indigestion, and have had other symptoms more in tune with hypo. Still, my levels keep coming up high or normal.

Here are my current list of questions: what are the "new guidelines" that have been discussed? How should I prepare for the RAI--foods, fluroide, etc.? What should I expect from the RAI treatment? How do I help my body not put on more weight, lose hair, etc.?

[Guest guest]

Sammie! Thanks for jumping in here!

I knew that there were more specifics to Grave's treatment but my brain wouldn't poop it out... Not enough repetition with those facts for them to be at the top of my brain, I guess..

Just really glad that you jumped in...

Could you post the link to the Grave's group, please?

Topper ()

On Thu, 31 Mar 2005 09:42:32 -0800 (PST) Sammie Baker writes:

Carolyn,Have you been on the Grave's support group? There aresome pretty graphic pics of women who did RAI and the thyroid eye disease as a result of RAI. Seriously,you couldn't pay me a million dollars to do RAI. Or $2 million. Or $3 million.So with your labs in the "normal ranges," why are youdoing RAI? Because the point of RAI is just to getrid of the HyperT symptoms. It might be a good optionif you have thyroid cancer because RAI just kills yourthyroid. It doesn't do anything about the Grave'santibodies that causes HyperT. Your antibodies willstill be there, if not ELEVATED, after the RAI. You are going to go pretty severely HypoT after RAIwith your numbers in the "normal" ranges already. Butin my opinion, you are HypoT right now with thosenumbers. Do you know why aren't they testing you forFree T3? Total T3 is an outdated test.There is no rush to do RAI. Please join the Grave'sgroup and post there. I'm sure you'll get a flurry ofopinions of people with experience with RAI and whythey advise against. Way, way too risky. And yet,totally barbaric if you are subclinically HypoT oreven with normal thyroid levels. Why do it if you canbalance your thyroid out with meds and hopefully beoff meds completely one day? I could go on and on. Sorry......SAMMIE

[Guest guest]

Great, you did post them, thanks! It will give Carolyn and the others here with Graves more specific info.. but you guys are all still welcome here, too!!!

*smile*

The block and replace.. could you expand on that a bit more?

Topper ()

On Thu, 31 Mar 2005 10:57:17 -0800 (PST) Sammie Baker writes:

Hi Carolyn,Here's the grave's group I was talking about:http://health.groups.yahoo.com/group/gravessupport/But this is another good one:http://www.mediboard.com/gravesWhat I can also tell you is that most of my sufferingwith Grave's has been when my doctor overmedicated meand I went HypoT. I had so many embarrassing cryingfits in his office to mention. I was so desperate tobe well, I nearly did RAI to end the suffering. Everyday I'm grateful that one night I got on the net andfound these groups and got to the bottom of myproblems. The problem wasn't that I was HyperT, theproblem was that I was HypoT from overmedication!!! Once I stopped believing my doc knew all, and startinglistening to my body and the advice of other peoplegoing through exactly what I did, I got better. Ilowered my meds, started ordering the right tests andadjusting meds when needed. Virtually overnight Ifelt like a new person. I was on 50mgs of methimazoleand in agony. Now I'm on 2.5mgs with thyroid meds(block and replace). Can you imagine the difference? From 50mgs to2.5mgs!!!!And listening to new members each week who say thattheir docs are pushing RAI makes me really suspectthat these docs are getting some sort of kick backsfrom the RAI. Otherwise, I dont even know why they doit. The idea of radioactive anything makes me reallynervous. Especially when there are meds that are muchmore effective with much less risk.Please post in the yahoo group. There are manymothers that can discuss the issue of RAI and childrenas well. It's another real concern. Even if you wait30 days before making your decision, I'm sure you'llfeel better about it. Best to completely educateyourself and talk to as many people as possible beforemaking a permanent choice like RAI.Best,SAMMIE

[Guest guest]

Carolyn, Sammie has joined us with this and offered links to some Grave's specific groups.. but I'd like to comment on your labs.

Taken at first glance... the TSH range that the lab/doc is using is outdated, by nearly two years... so that kinda shows he/they are behind the times with thyroid info.

I look at your numbers, and, well.. you have to take into consideration that antibodies skew things a bit... but for MOST folks ideals for the frees tend to be having the Free T4 at mid range or slightly higher, and the Free T3 at the top end of the range, or slightly higher... so with your numbers;

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

Mid range would be about 1.34.. you're below that.....

T3, Total (reflex) 130 70-181 ng/dl

Mid range would be about 125, you're barely above that.

That, to me, tends to suggest that they have you suppressed too much (assuming that your body reacts like the majority of folks, and we do know that not everyone falls in that category). But, it's affecting your heart... so the question is why?

There may be other factors involved. We might have to pick at this some more.. but, first... check out the Grave's group and present your concerns to them.. they may have some insites specific for those with Grave's antibodies that would be more helpful.

Topper ()

On Thu, 31 Mar 2005 08:13:32 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Caroline

[Guest guest]

Is it possible that there is both Hashimoto's and Grave"s here?

, proud Group Co-owner

Re: Grave's, preparing for RAI, questions about after

Hmmmm...

Do you have copies of your last labs?

I have a thought.... but want to see your numbers.

The docs are referring to your 'being normal' and that you may be on too much med to achieve that.... but you are gaining weight.. which is not impossible when hyper, but not the 'usual'.

Hashi's is the most common diagnosis here, so we're not as knowledgeable with Grave's, I'll say that right up front. So we'll likely be learning with you as we get into more detail.

But my thought... what numbers are they aiming for as 'normal'?

You brought up fluoride... it's best to avoid. It cause a lot of problems with thyroid glands and hormone. We all try to steer clear of it...

You mentioned lymph nodes in your first email.. there is a risk of damage to the lymphatic system when having RAI. With effects showing up as long as 20 years after the RAI was administered. I started having problems in the last year.. Not bad, so far. But I have to keep on top of it.

You're right with surgery be a potential risk for your voice. And, depending on how hyper your system is it may not be an option for you.

How long have you been on meth to control the hyper?

Things that you may want to ask the doc/clinic about after treatment...

What options for medication will you have?

You are looking for them to offer options here. If they simply say Synthroid, or other brand of synthetic and imply that it's 'just one pill a day and you'll be fine' you may want to be looking elsewhere for a doc to follow your treatment. Ideally doc should say something about both synthetics and naturals, suggesting that it will be a trial and error to see what works best for you. For some folks synthetics do the job, for MOST folks it doesn't, but you should be given the choice, and that is the best kind of doc to find.

What will be the schedule for labs after the RAI?

A good doc should have you coming in at the VERY LEAST every 6 to 8 weeks as your dosage is being adjusted and your labs and symptoms monitored. My own doc had me coming in every 2 weeks for the first 6 months, watching for any thyroid function after my RAI and when she was sure that the gland wasn't going to kick in she started me on meds. My situation was a bit different, I went into storm due to a genetic defect in my TSH receptors, so they needed to know if there was any remaining function.

What will the docs goals be as far as the hormone levels?

Here you want to hear three tests mentioned, minimum, TSH, Free T4, and Free T3. After thyroid treatment TSH really doesn't mean much to us at all, the most important will be the Free T4 and Free T3. If the doc says simply TSH, he's not really on top of thyroid care and most likely doesn't know that the most important test are the Frees. Asking if the doc will monitor the frees is okay at this point, he may be willing, if asked. If he flat out says no, here again is the red flag letting you know that you'll be wanting to find another doc.

Personal items..... I'd be nervous and looking for the yellow pages if he brings up weight loss drugs or antidepressants as things that will be used after RAI.

That's what's coming to mind right now. I believe there are also some specifics as to Grave's antibodies following RAI and watching for the antibodies affecting other parts of the body. But I'm having a brain fart and can't remember how that goes.... Can anyone else jump in here???

Back when I had RAI I had to quarantine myself for three days, and was told not to be around kids for five days. I was given instructions on decontamination and such to care for myself. Recently we've had members that were kept in the hospital with the staff taking care of all of this stuff... so I may let them jump in and comment.

You want to keep in mind that you shouldn't be around adults for three days after the treatment and kids for five. Clothing, bedding, eating utensils, anything you touch, wear or hold during that time can become contaminated. I'm not trying to scare you, just want to let you know some of this stuff so that you can be prepared. I wasn't.

You shouldn't get pregnant for at least six months, better a year, after RAI. Although we have someone that did and her baby, last I heard, was just fine. But you need to be aware that there is a possibility of birth defects, due to the radiation, if conception occurs too soon.

The radiation destroys the thyroid gland, causing it to shrivel, it's still there, just no longer alive and working. You're not going to have something sloughing out of your body and, from the outside, your throat won't be sinking in or anything like that. If your gland is enlarged, you have a goiter, that should go away.

After the RAI you will most likely be going hypo. The chances that they will destroy exactly the amount of the gland and that the Grave's won't hyper stimulate it is pretty slim. So they are gonna aim for total ablation and not partial (even if they say otherwise). It's a whole new world and will take some learning, both about how it all works and how your body will be adjusting. We'll help you with that. How hypo affects us is so very different, very individual, for us. So you may not have the exact same symptoms/reactions as others... but you are most likely to find folks that have gone through most of it and will help you to understand, learn and deal with it.

Always remember that we're here. As you prepare for the procedure, as you deal with the adjustments afterwards and learn how to take care of your 'new' body. You don't have to deal with this alone, like so many of us have. Remember.... I had no warning for my RAI... I went in, they dosed me and they sent me home to take care of myself. No one to talk to, no options, nothing... so you're WAY ahead of me.

Oh.. weight... hypos tend to gain weight.. so you're going to be learning more about nutrition and metabolism and helping your body to control, the key thing here, as with most hypo symptoms, is getting your meds correct, getting enough hormone in your system to allow your body to work properly...

Topper ()

On Thu, 31 Mar 2005 05:44:38 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you for getting back to me. The endo's I spoke to--and who recently examined me--felt that they were having to give me too much Methimazole (10mg/Twice a Day) in order to keep me "Normal." I have also had to take Propanalol (20mg/As needed) for my overachieving heartbeat. While they did not bring up surgery, I would have a fit with that option since I am a performer and need my voice. My understanding is that thyroid surgery is delicate and that it can affect the vocal chords.

I have not discussed Armour with the endos, nor has there been any in-depth conversation regarding the post-RAI care. I will contact the clinic to discuss these things, but I would like to have your recommended laundry list of questions to pose to the doctors.

Please note that I have gained considerable amounts of weight this past year, I have suffered from gastritis/indigestion, and have had other symptoms more in tune with hypo. Still, my levels keep coming up high or normal.

Here are my current list of questions: what are the "new guidelines" that have been discussed? How should I prepare for the RAI--foods, fluroide, etc.? What should I expect from the RAI treatment? How do I help my body not put on more weight, lose hair, etc.?

[Guest guest]

Dear Topper, Sammie & ,

I went ahead a posted some questions on the Graves' site. Do you recommend that I contact my GP and tell him about the outdated testing? Also, should I try to postpone the RAI. I am supposed to go off my meds on April 6th to induce the hyperthyroidism. I have suspected that may be suffering from symptoms of both Hashimotos & Graves. In regards to the effect on my heart--any suggestions as to what is leaving it so vulnerable to racing heart syndrome? A dear friend of mine is a doctor and he is watching this situation from a distance, helping me to be a more effective advocate. That said, it would be great if I could share some of your insights with him, if that's ok. If so, then I would like to give him some possibilities as to why my heart races when it should be more in control.

Here are some other stats: I'm 39, my mother has Hashimotos, two of my cousins have Hashimotos, as well as an aunt. My mother swears that she completed menopause by early 40's, though I'm not sure that her time frame squares with my memories. I have had one full term pregnancy--he's now 13. Outside of the racing heart, my symptoms seem to lean more toward Hashimotos-such as, weight gain, swollen hands, digestive irritations, blah, blah, blah.

I can't tell you how wonderful it is to actually talk this through someone(s). I really appreciate it.

Best,

Carolinetopper2@... wrote:

Carolyn, Sammie has joined us with this and offered links to some Grave's specific groups.. but I'd like to comment on your labs.

Taken at first glance... the TSH range that the lab/doc is using is outdated, by nearly two years... so that kinda shows he/they are behind the times with thyroid info.

I look at your numbers, and, well.. you have to take into consideration that antibodies skew things a bit... but for MOST folks ideals for the frees tend to be having the Free T4 at mid range or slightly higher, and the Free T3 at the top end of the range, or slightly higher... so with your numbers;

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

Mid range would be about 1.34.. you're below that.....

T3, Total (reflex) 130 70-181 ng/dl

Mid range would be about 125, you're barely above that.

That, to me, tends to suggest that they have you suppressed too much (assuming that your body reacts like the majority of folks, and we do know that not everyone falls in that category). But, it's affecting your heart... so the question is why?

There may be other factors involved. We might have to pick at this some more.. but, first... check out the Grave's group and present your concerns to them.. they may have some insites specific for those with Grave's antibodies that would be more helpful.

Topper ()

On Thu, 31 Mar 2005 08:13:32 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Caroline

[Guest guest]

i agree with a lot of what said...

good luck to you Carolyn...hang in there.

smiles,

Beccatopper2@... wrote:

Hmmmm...

Do you have copies of your last labs?

I have a thought.... but want to see your numbers.

The docs are referring to your 'being normal' and that you may be on too much med to achieve that.... but you are gaining weight.. which is not impossible when hyper, but not the 'usual'.

Hashi's is the most common diagnosis here, so we're not as knowledgeable with Grave's, I'll say that right up front. So we'll likely be learning with you as we get into more detail.

But my thought... what numbers are they aiming for as 'normal'?

You brought up fluoride... it's best to avoid. It cause a lot of problems with thyroid glands and hormone. We all try to steer clear of it...

You mentioned lymph nodes in your first email.. there is a risk of damage to the lymphatic system when having RAI. With effects showing up as long as 20 years after the RAI was administered. I started having problems in the last year.. Not bad, so far. But I have to keep on top of it.

You're right with surgery be a potential risk for your voice. And, depending on how hyper your system is it may not be an option for you.

How long have you been on meth to control the hyper?

Things that you may want to ask the doc/clinic about after treatment...

What options for medication will you have?

You are looking for them to offer options here. If they simply say Synthroid, or other brand of synthetic and imply that it's 'just one pill a day and you'll be fine' you may want to be looking elsewhere for a doc to follow your treatment. Ideally doc should say something about both synthetics and naturals, suggesting that it will be a trial and error to see what works best for you. For some folks synthetics do the job, for MOST folks it doesn't, but you should be given the choice, and that is the best kind of doc to find.

What will be the schedule for labs after the RAI?

A good doc should have you coming in at the VERY LEAST every 6 to 8 weeks as your dosage is being adjusted and your labs and symptoms monitored. My own doc had me coming in every 2 weeks for the first 6 months, watching for any thyroid function after my RAI and when she was sure that the gland wasn't going to kick in she started me on meds. My situation was a bit different, I went into storm due to a genetic defect in my TSH receptors, so they needed to know if there was any remaining function.

What will the docs goals be as far as the hormone levels?

Here you want to hear three tests mentioned, minimum, TSH, Free T4, and Free T3. After thyroid treatment TSH really doesn't mean much to us at all, the most important will be the Free T4 and Free T3. If the doc says simply TSH, he's not really on top of thyroid care and most likely doesn't know that the most important test are the Frees. Asking if the doc will monitor the frees is okay at this point, he may be willing, if asked. If he flat out says no, here again is the red flag letting you know that you'll be wanting to find another doc.

Personal items..... I'd be nervous and looking for the yellow pages if he brings up weight loss drugs or antidepressants as things that will be used after RAI.

That's what's coming to mind right now. I believe there are also some specifics as to Grave's antibodies following RAI and watching for the antibodies affecting other parts of the body. But I'm having a brain fart and can't remember how that goes.... Can anyone else jump in here???

Back when I had RAI I had to quarantine myself for three days, and was told not to be around kids for five days. I was given instructions on decontamination and such to care for myself. Recently we've had members that were kept in the hospital with the staff taking care of all of this stuff... so I may let them jump in and comment.

You want to keep in mind that you shouldn't be around adults for three days after the treatment and kids for five. Clothing, bedding, eating utensils, anything you touch, wear or hold during that time can become contaminated. I'm not trying to scare you, just want to let you know some of this stuff so that you can be prepared. I wasn't.

You shouldn't get pregnant for at least six months, better a year, after RAI. Although we have someone that did and her baby, last I heard, was just fine. But you need to be aware that there is a possibility of birth defects, due to the radiation, if conception occurs too soon.

The radiation destroys the thyroid gland, causing it to shrivel, it's still there, just no longer alive and working. You're not going to have something sloughing out of your body and, from the outside, your throat won't be sinking in or anything like that. If your gland is enlarged, you have a goiter, that should go away.

After the RAI you will most likely be going hypo. The chances that they will destroy exactly the amount of the gland and that the Grave's won't hyper stimulate it is pretty slim. So they are gonna aim for total ablation and not partial (even if they say otherwise). It's a whole new world and will take some learning, both about how it all works and how your body will be adjusting. We'll help you with that. How hypo affects us is so very different, very individual, for us. So you may not have the exact same symptoms/reactions as others... but you are most likely to find folks that have gone through most of it and will help you to understand, learn and deal with it.

Always remember that we're here. As you prepare for the procedure, as you deal with the adjustments afterwards and learn how to take care of your 'new' body. You don't have to deal with this alone, like so many of us have. Remember.... I had no warning for my RAI... I went in, they dosed me and they sent me home to take care of myself. No one to talk to, no options, nothing... so you're WAY ahead of me.

Oh.. weight... hypos tend to gain weight.. so you're going to be learning more about nutrition and metabolism and helping your body to control, the key thing here, as with most hypo symptoms, is getting your meds correct, getting enough hormone in your system to allow your body to work properly...

Topper ()

On Thu, 31 Mar 2005 05:44:38 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you for getting back to me. The endo's I spoke to--and who recently examined me--felt that they were having to give me too much Methimazole (10mg/Twice a Day) in order to keep me "Normal." I have also had to take Propanalol (20mg/As needed) for my overachieving heartbeat. While they did not bring up surgery, I would have a fit with that option since I am a performer and need my voice. My understanding is that thyroid surgery is delicate and that it can affect the vocal chords.

I have not discussed Armour with the endos, nor has there been any in-depth conversation regarding the post-RAI care. I will contact the clinic to discuss these things, but I would like to have your recommended laundry list of questions to pose to the doctors.

Please note that I have gained considerable amounts of weight this past year, I have suffered from gastritis/indigestion, and have had other symptoms more in tune with hypo. Still, my levels keep coming up high or normal.

Here are my current list of questions: what are the "new guidelines" that have been discussed? How should I prepare for the RAI--foods, fluroide, etc.? What should I expect from the RAI treatment? How do I help my body not put on more weight, lose hair, etc.?

Becca

~Sgl Parent First and Foremost~

Fighting Thyroid Disease since 1996

"Tomorrow is promised to no one."

Yahoo! Messenger Show us what our next emoticon should look like. Join the fun.

[Guest guest]

Donna, , Topper, and Sammie--

Thanks for your input. How do I get re-tested with the newer standards/guidelines? Can I request them through my doctor or do I need to get them through a more specialized doctor/clinic? I have to say I'm a bit off-put that my neighborhood hospital--which by this time should have an entire wing named after me--does not use the most current testing methods. How common is that?

Feeling naive--

CarolineDonna wrote:

Hi Carolyn

Rapid heart, pounding heart, feeling like pressure in your chest and feeling like an elephant sitting your chest are all pretty normal for HyperT and Graves Disease. The antibodies that are attacking the thyroid are causing your entire body to work extra hard. Every organ, is working harder. You may also notice that you urinate more, have more frequent bowel movements, are hungrier than normal, your mind races with thoughts and you may feel like you are anxious but can't figure out why. You may have trouble sleeping at night. Waking often. Your legs may be busy during the night, in motion a lot more than you ever remember. Many folks suffer with shortness of breath or feeling winded when they exert themselves or climb stairs. You may be more irritable than ever and are behaving completely out of character. Hand tremors and leg pain is common as well. Any of these symptoms in any combination

are common with Graves Disease.

Getting the antibodies under control gives almost instant relief from most of these symptoms. Nothing in Thyroid disease happens overnight, it can take several medicine adjustments to start feeling better.

My grandfather had Hashimoto's, my sister is HypoT, two aunts are HypoT and I'm Graves Disease. The point is that Autoimmune Disease can run in a family and each affected person may have a different Thyroid Disease.

Getting your labs, FT3, FT4, TSH, and antibody tests, TPO and TSI will better tell you where you actually are currently. Even though TPO is normally seen in Hashimoto's, it is also seen in 80% of Graves Disease, also.

Out of all the symptoms above, I've had them all at one time or another. I chart my labs with my symptoms. That helps me know where I need to be to feel my best. I take Tapazole 3 times a day.

I hope some of this helps you.

Donna J.

Re: Grave's, preparing for RAI, questions about after

Dear Topper, Sammie & ,

I went ahead a posted some questions on the Graves' site. Do you recommend that I contact my GP and tell him about the outdated testing? Also, should I try to postpone the RAI. I am supposed to go off my meds on April 6th to induce the hyperthyroidism. I have suspected that may be suffering from symptoms of both Hashimotos & Graves. In regards to the effect on my heart--any suggestions as to what is leaving it so vulnerable to racing heart syndrome? A dear friend of mine is a doctor and he is watching this situation from a distance, helping me to be a more effective advocate. That said, it would be great if I could share some of your insights with him, if that's ok. If so, then I would like to give him some possibilities as to why my heart races when it should be more in control.

Here are some other stats: I'm 39, my mother has Hashimotos, two of my cousins have Hashimotos, as well as an aunt. My mother swears that she completed menopause by early 40's, though I'm not sure that her time frame squares with my memories. I have had one full term pregnancy--he's now 13. Outside of the racing heart, my symptoms seem to lean more toward Hashimotos-such as, weight gain, swollen hands, digestive irritations, blah, blah, blah.

I can't tell you how wonderful it is to actually talk this through someone(s). I really appreciate it.

Best,

Carolinetopper2@... wrote:

Carolyn, Sammie has joined us with this and offered links to some Grave's specific groups.. but I'd like to comment on your labs.

Taken at first glance... the TSH range that the lab/doc is using is outdated, by nearly two years... so that kinda shows he/they are behind the times with thyroid info.

I look at your numbers, and, well.. you have to take into consideration that antibodies skew things a bit... but for MOST folks ideals for the frees tend to be having the Free T4 at mid range or slightly higher, and the Free T3 at the top end of the range, or slightly higher... so with your numbers;

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

Mid range would be about 1.34.. you're below that.....

T3, Total (reflex) 130 70-181 ng/dl

Mid range would be about 125, you're barely above that.

That, to me, tends to suggest that they have you suppressed too much (assuming that your body reacts like the majority of folks, and we do know that not everyone falls in that category). But, it's affecting your heart... so the question is why?

There may be other factors involved. We might have to pick at this some more.. but, first... check out the Grave's group and present your concerns to them.. they may have some insites specific for those with Grave's antibodies that would be more helpful.

Topper ()

On Thu, 31 Mar 2005 08:13:32 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Caroline

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

[Guest guest]

Okay.. here I come.... I can't remember now if you've said or not.. but how did they determine that you have Grave's, have they done antibody tests? If they did, they should also have the results for the Hashi's antibodies, it is possible to have both... See if you can find out the numbers from the test(s) they've been running.

Explain to them that since your treatment is taking a more aggressive turn (use your own words) that you think it might be a good idea to start keeping a file of your own, that way if you should be on vacation or in an accident or something all the information would be quick at hand no matter where you are...

Now.. that said... Hashi's can also cause you to have hyper swings... Is it possible that they have diagnosed you as having Grave's based on symptoms and thyroid labs but not have tested antibodies? I'm not saying that that's what happened.. just throwing it in the air so that we can work on covering all bases.

We've had members that have had heart issues that were a result of deficiencies.... what tests have they done as far as your heart to determine the cause of the problems? Again, bringing this stuff up so that we can get more folks looking at the details and see what they might spot that others miss.

I should confess here that I'm wary of doctors and their motives, so I tend to be really picky about things and understanding the whys of their choices to treat or not treat and the medications. That's based on my personal experience with a string of REALLY crappy docs. I don't mean to make you feel wary or fearful or ANYTHING like that, I just want you to understand the reasons that I say some of the things that I say, it's me and my experience, and my desire to keep what happened to me from happening to others.

Your doc friend.. he's more than welcome to join the group, we started the group not only for thyroid patients but for the family members and friends of thyroid patients that want to learn more. Or, if he'd rather not deal with a group situation and postings on aspects other than your's.. he could contact me directly and I'll share my experiences and research with him and answer any questions that he may have about thyroid intricacies that he may not have had time to research.

Okay.. my mind is wandering.. I do that a LOT!! hehehehehe Heart racing... if we run on an assumption that this is a case of Hashi's or Hashi's and Graves there is a possibility that you were dealing with a hyper phase of Hashi's in combination with or without the Graves... and that the Hashi's antibodies are coming up again and knocking the gland down again. Adrenals that have been dealing with long term hyper are in pretty rough shape, I speak from personal experience there... Anxiety attacks increase heart rate.. prolonged anxiety attacks can weaken the heart. What if the heart issues aren't so much from excess hormone related to thyroid but a bad reaction to bad adrenals?????? I reaching here, this may be totally stupid.. but I've learned that it's best to let what's oozing out of your brain just come out cuz something you might say, no matter how nuts, might spark the light in some one else's brain and you find the solution...so consider that my ooze of the day!!! hehehehehe Insufficient levels of adrenal hormones reduce our body's ability to utilize thyroid hormone... so.. your blood levels could show higher amounts of Frees while your body tissues are not getting enough.... follow my wandering mind? That would leave you testing with high Frees while experiencing hypo symptoms (weight, hair, etc) and having a racing heart....

Now, lets talk about the disgusting stuff. Digestion. It's necessary to our health, our survival for the digestive system to work correctly. You didn't mention what difficulties you were having.. and if you're shy about talking about this stuff in group, you can contact me off list, no problem.. but..... as a general rule hypos tend to eat less, have slow digestive systems, incomplete digestion resulting in a greater tendency toward bloating and gas, and constipation. Hypers tend to eat more, have more complete digestion (oh... without getting too graphic... great digestion means that you can have corn on the cob for dinner and not find any in the toilet before you flush the next day, less than great digestion means there are plenty of corn kernels visible) have regular bowel movements that are 'quick, efficient and clean' (clean means that you don't have to reach for a second round of tp).

Personally, I've run the gammut... from hyper to storm to hypo to severe hypo and now back up to improving hypo... My digestive system has been so slow that I've had movements only once or twice a month, torn myself when passing, had gas so rank that it could peel wall paper. At times I was so impacted that I could feel the mass in my abdomen as it moved down the intestines, that last bend before leaving the body often caused enough pain to double me over. During my storm I was in the bathroom a couple dozen times a day, passing what was left over after digesting all the food that I was consuming. Amazingly those movements we so swift, effortless and clean that I could be in and out of the bathroom in two minutes. Which was great cause I needed to get back to eating!! Those are the extremes, but it might give you an idea of where in that range of extremes your own digestive function might fall.

Digestion also seems to be affected by body temp... low body temp reduces the population and efficiency of the bacteria in our guts that help us process and digest food... That just popped into my head, don't know if that pertains here, or not....

I'll stop now.. let other folks get in a word too...

Topper ()

On Thu, 31 Mar 2005 13:25:53 -0800 (PST) Carolyn Aguila writes:

Dear Topper, Sammie & ,

I went ahead a posted some questions on the Graves' site. Do you recommend that I contact my GP and tell him about the outdated testing? Also, should I try to postpone the RAI. I am supposed to go off my meds on April 6th to induce the hyperthyroidism. I have suspected that may be suffering from symptoms of both Hashimotos & Graves. In regards to the effect on my heart--any suggestions as to what is leaving it so vulnerable to racing heart syndrome? A dear friend of mine is a doctor and he is watching this situation from a distance, helping me to be a more effective advocate. That said, it would be great if I could share some of your insights with him, if that's ok. If so, then I would like to give him some possibilities as to why my heart races when it should be more in control.

Here are some other stats: I'm 39, my mother has Hashimotos, two of my cousins have Hashimotos, as well as an aunt. My mother swears that she completed menopause by early 40's, though I'm not sure that her time frame squares with my memories. I have had one full term pregnancy--he's now 13. Outside of the racing heart, my symptoms seem to lean more toward Hashimotos-such as, weight gain, swollen hands, digestive irritations, blah, blah, blah.

I can't tell you how wonderful it is to actually talk this through someone(s). I really appreciate it.

Best,

Caroline

[Guest guest]

Donna,

I'm in Chicago. The irony is killing me.

Let me see if I'm interpreting this correctly: I'm probably experiencing Hashimoto symptoms because I'm lower than usual, but its not shocking to also have some Graves symptoms--such as the rapid heart rate. I should not go skipping down the RAI road until I'm completely comfortable with it and being on Methimazole won't kill me--even if I've been on it for 10 years? That's what I hear a lot--that the meds I'm on are so toxic that its dangerous for me to be taking them this long.

Thanks, again,

CarolineDonna wrote:

Using outdated ranges is very very very common. Are you in Canada or UK? It was explained to me that Europe and Canada are still using the older ranges because of the measurement systems, metric blah blah blah...I can't remember the exact explanation, but it sounded reasonable at the time I was hearing it.

Anyway, you can go to your regular GP and request the tests. The ranges depend largely on the labs. As long as I know what the correct range is, I figure I can work for myself with the doctor.

You must be your own best advocate. You must be outspoken. You must educate yourself so you have the confidence to speak up.

The worse thing you can do...is let a doctor talk you into RAI. That is a permanent sentence to a lifetime of meds and regulating meds. Try all medicine avenues first.

Get new labs. Request a copy of your results including the ranges (no matter which the lab uses) bring the numbers here or to Graves Support with your current symptoms and you will get plenty more help with recommendations for meds, how to take them and how to manage your doctor and his suggested treatment plan.

Good Luck, Stay as relaxed and stress-free as possible and keep learning.

Donna J.

Re: Grave's, preparing for RAI, questions about after

Dear Topper, Sammie & ,

I went ahead a posted some questions on the Graves' site. Do you recommend that I contact my GP and tell him about the outdated testing? Also, should I try to postpone the RAI. I am supposed to go off my meds on April 6th to induce the hyperthyroidism. I have suspected that may be suffering from symptoms of both Hashimotos & Graves. In regards to the effect on my heart--any suggestions as to what is leaving it so vulnerable to racing heart syndrome? A dear friend of mine is a doctor and he is watching this situation from a distance, helping me to be a more effective advocate. That said, it would be great if I could share some of your insights with him, if that's ok. If so, then I would like to give him some possibilities as to why my heart races when it should be more in control.

Here are some other stats: I'm 39, my mother has Hashimotos, two of my cousins have Hashimotos, as well as an aunt. My mother swears that she completed menopause by early 40's, though I'm not sure that her time frame squares with my memories. I have had one full term pregnancy--he's now 13. Outside of the racing heart, my symptoms seem to lean more toward Hashimotos-such as, weight gain, swollen hands, digestive irritations, blah, blah, blah.

I can't tell you how wonderful it is to actually talk this through someone(s). I really appreciate it.

Best,

Carolinetopper2@... wrote:

Carolyn, Sammie has joined us with this and offered links to some Grave's specific groups.. but I'd like to comment on your labs.

Taken at first glance... the TSH range that the lab/doc is using is outdated, by nearly two years... so that kinda shows he/they are behind the times with thyroid info.

I look at your numbers, and, well.. you have to take into consideration that antibodies skew things a bit... but for MOST folks ideals for the frees tend to be having the Free T4 at mid range or slightly higher, and the Free T3 at the top end of the range, or slightly higher... so with your numbers;

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

Mid range would be about 1.34.. you're below that.....

T3, Total (reflex) 130 70-181 ng/dl

Mid range would be about 125, you're barely above that.

That, to me, tends to suggest that they have you suppressed too much (assuming that your body reacts like the majority of folks, and we do know that not everyone falls in that category). But, it's affecting your heart... so the question is why?

There may be other factors involved. We might have to pick at this some more.. but, first... check out the Grave's group and present your concerns to them.. they may have some insites specific for those with Grave's antibodies that would be more helpful.

Topper ()

On Thu, 31 Mar 2005 08:13:32 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Caroline

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

[Guest guest]

The testing method is still the same, it's the TSH range that has changed.. it's top end used to be 5.0 now it's 3.5 and it's been found that folks above 2.0 need further testing. A doc/lab that isn't aware that this has been reevaluated and the range updated are most likely not current with current guidelines and treatments. It's a case of encouraging them to increase their knowledge base as concerns thyroid diagnosis and treatment and most docs don't like that suggestion coming from the patient.

So what it boils down to is taking the results and understanding how to interpret your actual levels and go from there. There are ways of 'feeling' out a docs views... asking what the goal TSH value he's aiming for is, or stating what your own goal is.... and the same, but even more important, is stating the goal for the level of the Frees. You have to keep in mind that TSH is NOT a thyroid hormone, it's a pituitary hormone. What you are more concerned with, when treating thyroid hormone imbalance, is the level of the thyroid hormones themselves. Free T4 is the thyroid storage hormone that is free and available in your blood stream. Free T3 is the active thyroid hormone that is free and available in your blood. T3 is made during a conversion process which occurs throughout our bodies when T4 has an iodine molecule removed to leave a T3 molecule in it's place.

Without going into a whole lot more detail here, the chemical processes involved with all of this get pretty complicated and are pretty intricately balanced. Reducing your body's ability to convert T4 to T3 will reduce SOME of the available hormone that causes elevated hormone levels... so reducing or eliminating selenium from your diet will reduce conversion. Adding goitrogens that will bind with thyroid hormone leaves less of it available to your body. Thyroid hormone requires iodine for the thyroid gland to manufacture it. Reducing iodine intake will make less of it available for hormone production... so get rid of the iodized salt and go with plain, avoid seafood and seaweed products.. that kind of stuff.

None of this stuff will 'cure' there is no cure... but understanding how things work and what things might be adjusted to make things easier for your body can add up to something that might help.

Right now I think the first and most important thing is to determine which antibodies they have found and then start weighing symptoms, labs, options, treatments, and medications to come out with the best choice for your circumstance/body/lifestyle.

IMHO of course.

Now.. repeat after me: I am NOT naive! I am not naive. If my understanding of the word is close.. naive is the person that doesn't know and goes blissfully through life not caring that they might not know something. You went forth and made an effort to learn more than what was simply handed to you. You would have been naive, as I was, if you simply accepted what the doc said and just got in line to wait your turn.... you didn't do that. You wanted to know more, understand more, get the best and went looking for it.... I happen to think that is a wise person that does that... that makes sure that something this life affecting is done correctly and not just go on blind faith.

I learned the HARD way not to take things on blind faith.....

Topper ()

On Thu, 31 Mar 2005 14:12:39 -0800 (PST) Carolyn Aguila writes:

Donna, , Topper, and Sammie--

Thanks for your input. How do I get re-tested with the newer standards/guidelines? Can I request them through my doctor or do I need to get them through a more specialized doctor/clinic? I have to say I'm a bit off-put that my neighborhood hospital--which by this time should have an entire wing named after me--does not use the most current testing methods. How common is that?

Feeling naive--

Caroline

[Guest guest]

Donna.. I do need to add something to this. There are times that RAI is the only choice. In my case, from what I've learned in the last two years, if they had bothered to test me sooner and made a diagnosis I could have been adequately treated either with medication or with surgery, but would have still had to be monitored adjusted to work with my body's defect.... since they waited to long and I was already in storm to a degree that made waiting even more life threatening, RAI was the only choice.. the alternative, not taking the RAI would have meant my death.

I guess what I really want to say BADLY if anyone feels that there is something wrong and goes in to a doc who blows you off and poo poos you, PLEASE do NOT do what I did and go home. Go to another doc, stand up on your hind legs and get nose to nose with the doc and tell him to do his job and find out what is wrong. I had been raised to revere docs and to treat them as the 'all knowing ones' he said that there was nothing wrong yet I knew that there was something wrong. But docs know EVERYTHING and he said it was no big deal and to go home.

I went home and it nearly cost me my life, it did cost me my thyroid gland, exposure to radiation, my quality of life and now I'm having issues with lymphedema to put the cherry on the top of the sundae that is my life. But my sundae isn't made of ice cream and chocolate fudge.. it's made of stale instant mashed potatoes with molasses and a pimento. At first glance it looks the same, but take a bite out of it and you ain't gonna want it......

One sentence and then I'll shut up.

LEARN all you can about your thyroid situation and demand that you get the proper treatment to regain your health and quality of life and NEVER settle for anything less, failure to die, merely existing, is NOT living!!!!!

Topper () *sheepishly pushing soap box in the corner, wondering what my life would have been had I not lost so many years, spotting the crutch that I used to need to walk and smiling, cuz I'm learning how to get ME back*

On Thu, 31 Mar 2005 17:24:13 -0800 "Donna " writes:

Using outdated ranges is very very very common. Are you in Canada or UK? It was explained to me that Europe and Canada are still using the older ranges because of the measurement systems, metric blah blah blah...I can't remember the exact explanation, but it sounded reasonable at the time I was hearing it.

Anyway, you can go to your regular GP and request the tests. The ranges depend largely on the labs. As long as I know what the correct range is, I figure I can work for myself with the doctor.

You must be your own best advocate. You must be outspoken. You must educate yourself so you have the confidence to speak up.

The worse thing you can do...is let a doctor talk you into RAI. That is a permanent sentence to a lifetime of meds and regulating meds. Try all medicine avenues first.

Get new labs. Request a copy of your results including the ranges (no matter which the lab uses) bring the numbers here or to Graves Support with your current symptoms and you will get plenty more help with recommendations for meds, how to take them and how to manage your doctor and his suggested treatment plan.

Good Luck, Stay as relaxed and stress-free as possible and keep learning.

Donna J.

[Guest guest]

The idea behind block and replace is to " block " the

thyroid with anti-thyroid meds (PTU or

tapazole/methimazole) and then " replace " it with

thyroid meds (IMO armour or natural thyroid meds, but

synthroid is used as well).

This gives the thyroid a rest and hopefully it will

balance out, including the TSH which is suppressed

from Grave's.

I've done different versions of block and replace.

When I was diagnosed with Grave's, my Free T4 was

normal, but I had high Grave's antibodies with a

severe case of thyroid eye disease. So, you can

imagine that I went pretty severely HypoT on the

anti-thyroid meds, very quickly. And since I didn't

know better, I was in agony for 9 months until I got

online and found these groups and realized what my doc

was doing.

It took me awhile of figuring it all out, but now I'm

on 2.5mgs of methimazole (in 2 doses) and I just

started taking Thyroid-S yesterday (1 1/2 grains, but

I'll work up to 2 grains). I was on Synthroid with

compounded T3 before switching to Thyroid-S. It will

save me hundreds of dollars.

I decided to do block and replace because after being

so overmedicated, I was HypoT on NO meds. But being

on just thyroid meds, might stimulate my antibodies

and irritate my eye disease. I'm looking to raise my

FT4 and FT3 a bit, but so far so good. I've been

doing this version for about 6 months. Usually block

and replace is done with higher doses of methimazole

(30mgs or so), but this made me severely HypoT and

sick. It's so important to figure out what works for

you, (as I'm sure you already know).

Hope that helps.

SAMMIE

--- topper2@... wrote:

> Great, you did post them, thanks! It will give

> Carolyn and the others

> here with Graves more specific info.. but you guys

> are all still welcome

> here, too!!!

>

> *smile*

>

> The block and replace.. could you expand on that a

> bit more?

>

> Topper ()

>

> On Thu, 31 Mar 2005 10:57:17 -0800 (PST) Sammie

> Baker

> writes:

> Hi Carolyn,

>

> Here's the grave's group I was talking about:

>

> http://health.groups.yahoo.com/group/gravessupport/

>

>

> But this is another good one:

>

> http://www.mediboard.com/graves

>

>

> What I can also tell you is that most of my

> suffering

> with Grave's has been when my doctor overmedicated

> me

> and I went HypoT. I had so many embarrassing crying

> fits in his office to mention. I was so desperate

> to

> be well, I nearly did RAI to end the suffering.

> Every

> day I'm grateful that one night I got on the net and

> found these groups and got to the bottom of my

> problems. The problem wasn't that I was HyperT, the

> problem was that I was HypoT from overmedication!!!

> Once I stopped believing my doc knew all, and

> starting

> listening to my body and the advice of other people

> going through exactly what I did, I got better. I

> lowered my meds, started ordering the right tests

> and

> adjusting meds when needed. Virtually overnight I

> felt like a new person. I was on 50mgs of

> methimazole

> and in agony. Now I'm on 2.5mgs with thyroid meds

> (block and replace).

>

> Can you imagine the difference? From 50mgs to

> 2.5mgs!!!!

>

> And listening to new members each week who say that

> their docs are pushing RAI makes me really suspect

> that these docs are getting some sort of kick backs

> from the RAI. Otherwise, I dont even know why they

> do

> it. The idea of radioactive anything makes me

> really

> nervous. Especially when there are meds that are

> much

> more effective with much less risk.

>

> Please post in the yahoo group. There are many

> mothers that can discuss the issue of RAI and

> children

> as well. It's another real concern. Even if you

> wait

> 30 days before making your decision, I'm sure you'll

> feel better about it. Best to completely educate

> yourself and talk to as many people as possible

> before

> making a permanent choice like RAI.

>

> Best,

>

>

> SAMMIE

__________________________________

Yahoo! Messenger

Show us what our next emoticon should look like. Join the fun.

http://www.advision.webevents.yahoo.com/emoticontest

[Guest guest]

Thanks, I've already joined up.. it's time to increase my knowledge base!!!

Topper ()

On Thu, 31 Mar 2005 15:05:26 -0800 (PST) Sammie Baker writes:

Hi Topper,Here's the grave's group I was talking about:http://health.groups.yahoo.com/group/gravessupport/But this is another good one:http://www.mediboard.com/graves

[Guest guest]

Carolyn,

Tell me more about your heart symptoms. Donna brought

a good point. I ALWAYS get a racing heart from high

salt/iodine/processed foods, even when my levels are

normal or low. My holistic doc said that my heart is

just sensitive to iodine, but this doesn't really mean

that I'm HyperT. The interesting thing is that I eat

sushi once every 6 weeks (usually the day after I get

labs) and I NEVER get a racing heart from the iodine.

So, it may not be the iodine that I'm sensitive to,

but some other processed crap they put in foods.

Because sushi and seaweed is very high in iodine and I

have no adverse effects from it. However, I'm still

eating it in moderation.

SAMMIE

--- Donna wrote:

> Have you had any other tests to check your heart?

> Have you kept a record of your basal temps, blood

> pressure and pulse? All can be clues to what is

> ailing you. What about your diet? Are you eating

> fast foods a lot, how about prepared foods? I'm

> just throwing stuff out there. I can tell a huge

> difference if I eat fast foods a lot and I don't buy

> packaged foods anymore.

__________________________________

Yahoo! Messenger

Show us what our next emoticon should look like. Join the fun.

http://www.advision.webevents.yahoo.com/emoticontest

[Guest guest]

In September, during my thyroid storm incident, I had several heart tests--x-ray, ultrasound, and electrocardiogram. All came back normal and good. I have a resting heart rate of about 88 beats per minute--unless the Propanolol has kicked in good. My blood pressure is around 110/80. I'm in relatively good health and I don't eat fast food, smoke (I quit over a year ago), or drink alcohol. In fact, I don't even have caffiene in my diet. In spite of some of the fatigue and weight gain, I'm active--walking and biking with regularity. I do indulge in some baked goods--mainly homemade, and I'm learning to stay far away from corn syrup. )Although, I must say I don't really understand a life without chocolate.) That said, I've managed to gain 25 pounds in several months. In regards to quality of life issues, that is truly a concern. Also, upon

examination of my thyroid, most doctors simply state that it's "subtle." It's neither horribly enlarged or a goiter.

If I may confide, I am scheduled to release my first book this year. I am horrified by the prospect that I may have to postpone what has been a life-long dream in order to deal with my petulant thyroid. I worry that I won't be able to meet the demands of interviews, book signings, readings and/or performances, as well as other publishing responsibilities if I'm dealing with the negative effects of RAI.

I hope this additonal information helps. It sure helps me to unload.

Best,

CarolineDonna wrote:

There are folks that have been on Methimazole for many years with no ill effects. Things change with people and their is always the chance that meds need tweaking and even changed if allergies form, etc. But most important, unless you have thyroid cancer, there is no reason to rush for RAI. It is possible to have Hashimoto's and Graves. The most important thing is to get antibodies tested. I don't remember your labs, if you listed them in an earlier message. If you were diagnosed with Graves is why you have been on ATD for many years, perhaps you are taking too high a dose that is sending you Hypo. On the other hand, if you have been diagnosed with Hashi, you can swing from Hyper to Hypo and back again. That is the nature of Hashimoto's.

Have you had any other tests to check your heart? Have you kept a record of your basal temps, blood pressure and pulse? All can be clues to what is ailing you. What about your diet? Are you eating fast foods a lot, how about prepared foods? I'm just throwing stuff out there. I can tell a huge difference if I eat fast foods a lot and I don't buy packaged foods anymore.

Again, Just say no to RAI. Get fresh labs, keeps lists of symptoms and lower your stress. Educate yourself by researching and reading. Use the support groups to read up on other's symptoms and achievements in feeling better. Google Shomon and read her stuff on HypoT...Google Elaine and read her sites about HyperT and Graves. Use meds to get regulated and be your own best advocate. That's the best way to help yourself IMHO.

Donna J.

Re: Grave's, preparing for RAI, questions about after

Dear Topper, Sammie & ,

I went ahead a posted some questions on the Graves' site. Do you recommend that I contact my GP and tell him about the outdated testing? Also, should I try to postpone the RAI. I am supposed to go off my meds on April 6th to induce the hyperthyroidism. I have suspected that may be suffering from symptoms of both Hashimotos & Graves. In regards to the effect on my heart--any suggestions as to what is leaving it so vulnerable to racing heart syndrome? A dear friend of mine is a doctor and he is watching this situation from a distance, helping me to be a more effective advocate. That said, it would be great if I could share some of your insights with him, if that's ok. If so, then I would like to give him some possibilities as to why my heart races when it should be more in control.

Here are some other stats: I'm 39, my mother has Hashimotos, two of my cousins have Hashimotos, as well as an aunt. My mother swears that she completed menopause by early 40's, though I'm not sure that her time frame squares with my memories. I have had one full term pregnancy--he's now 13. Outside of the racing heart, my symptoms seem to lean more toward Hashimotos-such as, weight gain, swollen hands, digestive irritations, blah, blah, blah.

I can't tell you how wonderful it is to actually talk this through someone(s). I really appreciate it.

Best,

Carolinetopper2@... wrote:

Carolyn, Sammie has joined us with this and offered links to some Grave's specific groups.. but I'd like to comment on your labs.

Taken at first glance... the TSH range that the lab/doc is using is outdated, by nearly two years... so that kinda shows he/they are behind the times with thyroid info.

I look at your numbers, and, well.. you have to take into consideration that antibodies skew things a bit... but for MOST folks ideals for the frees tend to be having the Free T4 at mid range or slightly higher, and the Free T3 at the top end of the range, or slightly higher... so with your numbers;

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

Mid range would be about 1.34.. you're below that.....

T3, Total (reflex) 130 70-181 ng/dl

Mid range would be about 125, you're barely above that.

That, to me, tends to suggest that they have you suppressed too much (assuming that your body reacts like the majority of folks, and we do know that not everyone falls in that category). But, it's affecting your heart... so the question is why?

There may be other factors involved. We might have to pick at this some more.. but, first... check out the Grave's group and present your concerns to them.. they may have some insites specific for those with Grave's antibodies that would be more helpful.

Topper ()

On Thu, 31 Mar 2005 08:13:32 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Caroline

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

[Guest guest]

Dear Sammie,

The heart symptoms include racing heart--last September I was up to 156 beat per minute (on the night of the Storm). As I review the state of my life last summer, however, I was stressed out. Unusually so. And depressed. It frankly didn't surprise me that I wasn't feeling that well. Also, I was eating like a hippo in heat. I could not stay satiated. Since, I eat fairly well and I was working out, I was worried that maybe I was really sick.

I haven't really thought about the iodine issue. I don't usually salt my food--although I will season it when I cook--but I don't usually salt lots of what eat with any consistency. Should I beg off it or just in moderation?

Best,

CarolineSammie Baker wrote:

Carolyn,Tell me more about your heart symptoms. Donna broughta good point. I ALWAYS get a racing heart from highsalt/iodine/processed foods, even when my levels arenormal or low. My holistic doc said that my heart isjust sensitive to iodine, but this doesn't really meanthat I'm HyperT. The interesting thing is that I eatsushi once every 6 weeks (usually the day after I getlabs) and I NEVER get a racing heart from the iodine.So, it may not be the iodine that I'm sensitive to,but some other processed crap they put in foods. Because sushi and seaweed is very high in iodine and Ihave no adverse effects from it. However, I'm stilleating it in moderation.SAMMIE--- Donna wrote:> Have you had any other tests to check your

heart? > Have you kept a record of your basal temps, blood> pressure and pulse? All can be clues to what is> ailing you. What about your diet? Are you eating> fast foods a lot, how about prepared foods? I'm> just throwing stuff out there. I can tell a huge> difference if I eat fast foods a lot and I don't buy> packaged foods anymore. __________________________________ Yahoo! Messenger Show us what our next emoticon should look like. Join the fun. http://www.advision.webevents.yahoo.com/emoticontest

[Guest guest]

The power of our group is that we all have slightly different experiences and that we all look at things from slightly different angles.. being able to jump in with what we know.. sharing experiences and view points with each other that we can relate, positive or negative, is the BEST way, I think, for us all to learn.

I spotted something in a couple of posts that I wanted to touch on...

Withholding meds in prep for RAI has to do with how the gland works. It's not really that you are being pushed either to hypo or to hyper it's that the gland function has to be independent of meds. I'll explain why with a bit of review.

One of the thyroid glands many functions is to filter iodine from the blood stream so that it can be used in the manufacture of thyroid hormone. By stopping medication in the hypo person the gland has to kick butt to try to produce hormone that causes it to start pulling in iodine in preparation for production. In the hyper person stopping the meth allows the gland to go into it's hyper phase of over drive and kick up its filtration/collection of iodine.

RAI is radioactive iodine. Iodine that has been irradiated with the specific intent that it be filtered out by the thyroid gland, concentrating the radiation in the gland and then the radiation killing tissue. How much of the gland that is destroyed is dependant on not only the dose RAI given but the efficiency of the gland filtering it out of the blood and the physicality (is that a word??? ) of the body and how fast it cleans the radiation out of the body. That is why they want you to eat and drink as much as you want to help move the stuff out of the body in the shortest period of time.

When they determine the dose to give it's a 'best guess' scenario. They weight you, guess your level of thyroid activity (which is trickier when in storm, as I was) estimate your level of physical activity... and then, last but not least 'flip a coin' and determine if the math is accurate.

As the gland dies the irradiated iodine leaves the gland tissues and flows along in the blood stream. It is released from the body in any fluids or moisture that leaves the body, urine, saliva, perspiration, feces, mucous, body oils... any liquid that leaves the body contains remnants of the radioactivity. That is why you have to stay away from other people, the moisture in the air that you exhale is actually contaminated. The instructions that are followed after RAI treatment include decontamination of clothing, eating utensils, even the bathroom - you actually have to clean the toilet and double flush after using to decontaminate. Not only for someone else that may use it after you but so that you don't re contaminate yourself.

At the time it was given to me, about 15 years ago, I was told that there were NO side effects.... I've found out since then that it wasn't exactly true. But, keep in mind that at that time I was told how lucky I was that I had a genetic flaw and not cancer. At that time they said that if you had thyroid cancer, even with treatment, you would be dead in five years. Period. Now.. Thyroid cancer is one of the most easily treated cancers because it is so isolated and seems to be no worse to treat after surgery or RAI than any other hypo thyroid condition. Not to say that any of us are properly treated as hypos!

I'm still not gonna say RAI is a good thing. But I will say that in some cases it's an only option. Understanding how it works and how to reduce possible long term side affects are worth checking out when considering it, or facing it, as a treatment option.

Would I do the RAI again if I could go back and do it over, faced with the same circumstances? Probably. I was so bad at the time that I would have died if I hadn't. But what I'd really want to do is go back to the first doc I saw and at the point where he said that I was 'too fat to be sick' and told me to go home.. I would have punched his prejudiced nose through the back of his head and replaced it with his male appendage and then asked to see another doc. I saw him in plenty of time to have been able to choose between antithyroid meds or surgery, but because he thought I was making a mountain out of a mole hill I wasn't able to make that choice. I was literally forced into a situation were I had to sit in a chair, with no one to talk to, no time to research, not time to think and answer a question.... Do you want this treatment or do you want to die? Here, sign this paper, it says that you are releasing us of any and all liability for the treatment we are about to give you, if you don't sign it we won't treat you.

I'm gonna stop now, or I'll get all pissed off and start thinking about crutches, dark alleys and the side of his head again..... Or my fist coming out of the back of his head... or....

Topper ()

On Thu, 31 Mar 2005 18:17:42 -0800 "Donna " writes:

You are right about your experience and the RAI being your only recourse. Thyroid Storm is very serious and I should have mentioned it. Glad you had my back and corrected this.

Thanks

Donna J.

[Guest guest]

So am I understanding this correctly? Grave's antibody activity is linked to thyroid gland activity, much like Hashi's.... ? But I get confused.... with no gland function then antibodies are known to attack other areas, often the eyes... Maybe you don't know this, maybe you do... but would figuring out how to control antibody levels (Graves) with the block and replace isolate, localize, concentrate their efforts in and around the thyroid gland and keep them from migrating?

I have to study this more.. I have a cousin that has joined our group in the last few months (Hi Cuz!!!) and she has Grave's.. it's time I learned more about it.... We have the TSH defect on my mom's side of the family and two cases of Grave's on my dad's side of the family..... Kinda makes me happy that I chose not to have kids (and even if I'd wanted them, the hyper took away my periods and I wouldn't have had kids anyway).

Topper ()

On Thu, 31 Mar 2005 15:14:16 -0800 (PST) Sammie Baker writes:

The idea behind block and replace is to "block" thethyroid with anti-thyroid meds (PTU ortapazole/methimazole) and then "replace" it withthyroid meds (IMO armour or natural thyroid meds, butsynthroid is used as well).This gives the thyroid a rest and hopefully it willbalance out, including the TSH which is suppressedfrom Grave's.I've done different versions of block and replace. When I was diagnosed with Grave's, my Free T4 wasnormal, but I had high Grave's antibodies with asevere case of thyroid eye disease. So, you canimagine that I went pretty severely HypoT on theanti-thyroid meds, very quickly. And since I didn'tknow better, I was in agony for 9 months until I gotonline and found these groups and realized what my docwas doing.It took me awhile of figuring it all out, but now I'mon 2.5mgs of methimazole (in 2 doses) and I juststarted taking Thyroid-S yesterday (1 1/2 grains, butI'll work up to 2 grains). I was on Synthroid withcompounded T3 before switching to Thyroid-S. It willsave me hundreds of dollars.I decided to do block and replace because after beingso overmedicated, I was HypoT on NO meds. But beingon just thyroid meds, might stimulate my antibodiesand irritate my eye disease. I'm looking to raise myFT4 and FT3 a bit, but so far so good. I've beendoing this version for about 6 months. Usually blockand replace is done with higher doses of methimazole(30mgs or so), but this made me severely HypoT andsick. It's so important to figure out what works foryou, (as I'm sure you already know).Hope that helps.SAMMIE

[Guest guest]

Carolyn... I'm gonna contact you off list.. I need to gab about your book!!!!

You can share with the group about it on theme day.... it will fit perfectly...

As far as venting goes... screaming, throwing things, slamming doors.. that's all okay.. but language.. we have to be careful with.. we're a family friendly group..... hehehehehe

Venting and blowing steam helps a lot with dealing with this mess we call life - with thyroid malfunction, many of us do it so go for it!!!!

Topper ()

On Thu, 31 Mar 2005 15:23:30 -0800 (PST) Carolyn Aguila writes:

In September, during my thyroid storm incident, I had several heart tests--x-ray, ultrasound, and electrocardiogram. All came back normal and good. I have a resting heart rate of about 88 beats per minute--unless the Propanolol has kicked in good. My blood pressure is around 110/80. I'm in relatively good health and I don't eat fast food, smoke (I quit over a year ago), or drink alcohol. In fact, I don't even have caffiene in my diet. In spite of some of the fatigue and weight gain, I'm active--walking and biking with regularity. I do indulge in some baked goods--mainly homemade, and I'm learning to stay far away from corn syrup. )Although, I must say I don't really understand a life without chocolate.) That said, I've managed to gain 25 pounds in several months. In regards to quality of life issues, that is truly a concern. Also, upon

examination of my thyroid, most doctors simply state that it's "subtle." It's neither horribly enlarged or a goiter.

If I may confide, I am scheduled to release my first book this year. I am horrified by the prospect that I may have to postpone what has been a life-long dream in order to deal with my petulant thyroid. I worry that I won't be able to meet the demands of interviews, book signings, readings and/or performances, as well as other publishing responsibilities if I'm dealing with the negative effects of RAI.

I hope this additonal information helps. It sure helps me to unload.

Best,

Caroline

[Guest guest]

I'm not the most educated about this. Elaine in the

Grave's group would be able to speak of it in a more

intellectual way, and she has written a book on

Grave's and Grave's Eye Disease.

I was under the impression that block and replace was

designed to give the thyroid a rest since being

overactive can be great stress to the entire body,

with your thyroid running overtime. The thyroid meds,

would then increase metabolic activity, but not

necessarily antibody activity. If I didn't have

Grave's, I would just be on thyroid meds. But I worry

that this would stimulate something and make my eye

disease worse. And the eye disease and grave's

disease are related, but run separate courses.

I do know that the Grave's antibodies " triggers " an

overactive thyroid. You don't get HyperT and then

Grave's. The antibody causes the overactive thyroid.

This can be confusing. But it didn't in my case.

However, maybe we caught it early enough, because of

my thyroid eye disease symptom. Elaine says that many

with Grave's were HypoT before Grave's kicked in. I'm

certain I was one of those people because I had some

pretty severe symptoms going back 20 years - low body

temp, easy weight gain, severe menstrual cramps etc.

Your cousin should check out the Grave's group. She

can post with Elaine's name in the subject and she'll

respond. I'm probably not the best person to ask the

technical questions, as I'm still learning myself.

SAMMIE

--- topper2@... wrote:

> So am I understanding this correctly? Grave's

> antibody activity is linked

> to thyroid gland activity, much like Hashi's.... ?

> But I get confused....

> with no gland function then antibodies are known to

> attack other areas,

> often the eyes... Maybe you don't know this, maybe

> you do... but would

> figuring out how to control antibody levels (Graves)

> with the block and

> replace isolate, localize, concentrate their efforts

> in and around the

> thyroid gland and keep them from migrating?

>

> I have to study this more.. I have a cousin that has

> joined our group in

> the last few months (Hi Cuz!!!) and she has

> Grave's.. it's time I learned

> more about it.... We have the TSH defect on my

> mom's side of the family

> and two cases of Grave's on my dad's side of the

> family..... Kinda

> makes me happy that I chose not to have kids (and

> even if I'd wanted

> them, the hyper took away my periods and I wouldn't

> have had kids

> anyway).

>

> Topper ()

>

> On Thu, 31 Mar 2005 15:14:16 -0800 (PST) Sammie

> Baker

> writes:

> The idea behind block and replace is to " block " the

> thyroid with anti-thyroid meds (PTU or

> tapazole/methimazole) and then " replace " it with

> thyroid meds (IMO armour or natural thyroid meds,

> but

> synthroid is used as well).

>

> This gives the thyroid a rest and hopefully it will

> balance out, including the TSH which is suppressed

> from Grave's.

>

> I've done different versions of block and replace.

> When I was diagnosed with Grave's, my Free T4 was

> normal, but I had high Grave's antibodies with a

> severe case of thyroid eye disease. So, you can

> imagine that I went pretty severely HypoT on the

> anti-thyroid meds, very quickly. And since I didn't

> know better, I was in agony for 9 months until I got

> online and found these groups and realized what my

> doc

> was doing.

>

> It took me awhile of figuring it all out, but now

> I'm

> on 2.5mgs of methimazole (in 2 doses) and I just

> started taking Thyroid-S yesterday (1 1/2 grains,

> but

> I'll work up to 2 grains). I was on Synthroid with

> compounded T3 before switching to Thyroid-S. It

> will

> save me hundreds of dollars.

>

> I decided to do block and replace because after

> being

> so overmedicated, I was HypoT on NO meds. But being

> on just thyroid meds, might stimulate my antibodies

> and irritate my eye disease. I'm looking to raise

> my

> FT4 and FT3 a bit, but so far so good. I've been

> doing this version for about 6 months. Usually

> block

> and replace is done with higher doses of methimazole

> (30mgs or so), but this made me severely HypoT and

> sick. It's so important to figure out what works

> for

> you, (as I'm sure you already know).

>

> Hope that helps.

>

>

> SAMMIE

__________________________________

Yahoo! Messenger

Show us what our next emoticon should look like. Join the fun.

http://www.advision.webevents.yahoo.com/emoticontest

[Guest guest]

Thyroid storm goes beyond that.. It's more than just an elevated heart rate.. the entire body goes into an accelerated state.

Your metabolic rate increases, you need more food, more oxygen, more water, more everything, your muscles get random signals to move, to twitch and do so uncontrollably, the excessive muscle activity, even at rest, while asleep, burns calories quickly, if your body isn't getting enough food, if you aren't eating enough, your body starts to cannibalize itself, breaking down muscle, body organs, and bone to keep itself alive.

During all of this the heart rate increases to keep up with the rest of the body. My resting pulse rate at the time I was finally diagnosed was 160.. if I stood up it shot over 200, they told me to sit down, they didn't want me walking around to see how much higher it would go.

As my body ate itself my skin started to thin. It was getting so thin over my elbows that you could see the elbow joint, the bone and cartilage, through the skin, that freaked my endo, she don't know what to do to protect it, to keep it from ripping when I moved my arm. I just had to be really careful.

I was lucky. I had been a body builder when the storm started and was good at reading my body, if I was craving something, I ate it.. as the storm progressed I stopped sleeping, simply because I couldn't stop eating long enough to sleep. My cravings got me eating foods that I'd never eaten before, and in huge amounts. I got insane for broccoli and soy nuts, two goitrogens, I started eating fruits, vegies and carbs in proportions that I'd never done before, I'd always been a meat eater and often didn't have carbs or vegies with a meal....

In thyroid storm the gland is producing full bore, no holds barred, as much as it can put out, non stop.. and the body either keeps up or dies... I was told that it was a miracle that I was still alive, for the severity of my storm and the duration I should have had severe malnutrition, or have already been dead.

My endo and I sat down, after my RAI, and did some figuring... we determined that I was eating between 25 and 30 thousand calories a day for the last several months before I was diagnosed and I was BARELY able to not lose weight.

I should stop now.. I think you get the idea.... it's an extreme situation and uncontrolled. You can't be treated medically, if you're in a car accident, for example, they can't give you any medications, they don't know how much, they can't put you on life support or ventilators or anything cause they aren't fast enough to keep your body alive, they can't do surgery cause they can't knock you out cause they can't give you enough to do it. They can't even give you blood transfusions cause they can't pump it in fast enough to keep up with the heart rate and the tissue demands for oxygen and waste removal.

In thyroid storm you are a person that is waiting to fall down and die. In fact, I was told that I could have a heart attack while simply sitting in a chair watching television. And it would be from over exertion.

Storm is not fun, I wouldn't wish it on my worst enemy.. well... I would wish it on the doc that ignored my symptoms and told me to go home!!!!

One story.. about eating. I was a courier when this hit.. I would load my truck in the morning and head to my first stop, 30 minutes away, down a busy freeway and into downtown Minneapolis. During that 30 minute drive I consumed one case of Snickers bars (24 full sized bars) and six cans of Mountain Dew. Every morning, for about 8 months. Picture yourself driving on a freeway, in traffic, and eating nearly one candy bar a minute and downing a full 12 ounce can of pop every five minutes while you are eating those candy bars. I don't even know how I did it. AND imagine having eaten that many candy bars, with nuts, and going to the bathroom and having a normal bowel movement, I did not have any diarrhea, I did not have any undigested nuts. My body sucked everything that was food and passed only what little was left as undigestible fiber. As I got more and more hyper... that kind of eating became pretty much round the clock.. and I was starving. I ate a whole cheesecake and would panic about when I could eat next..... I kid you not. and I'm not exaggerating one little bit, either.

If you think that's bad enough.... Your mind is just as hyper, it doesn't shut off, you hear everything, you see everything and your imagination is in over drive.. I came up with some of my best inventions when I was hyper.. it was like I could do three things at one time while another section of my brain was working on an entirely different project....

Topper ()

On Thu, 31 Mar 2005 15:24:48 -0800 (PST) Sammie Baker writes:

Why is thyroid storm serious? The racing heart? Can't it just be treated with beta blockers? I'm beenfunctionally HypoT always, so I never experiencedthis.SAMMIE

[Guest guest]

How long did your storm last?

Topper ()

On Thu, 31 Mar 2005 15:32:15 -0800 (PST) Carolyn Aguila writes:

Dear Sammie,

The heart symptoms include racing heart--last September I was up to 156 beat per minute (on the night of the Storm). As I review the state of my life last summer, however, I was stressed out. Unusually so. And depressed. It frankly didn't surprise me that I wasn't feeling that well. Also, I was eating like a hippo in heat. I could not stay satiated. Since, I eat fairly well and I was working out, I was worried that maybe I was really sick.

I haven't really thought about the iodine issue. I don't usually salt my food--although I will season it when I cook--but I don't usually salt lots of what eat with any consistency. Should I beg off it or just in moderation?

Best,

Caroline

[Guest guest]

Hi Carolyn

Rapid heart, pounding heart, feeling like pressure in your chest and feeling like an elephant sitting your chest are all pretty normal for HyperT and Graves Disease. The antibodies that are attacking the thyroid are causing your entire body to work extra hard. Every organ, is working harder. You may also notice that you urinate more, have more frequent bowel movements, are hungrier than normal, your mind races with thoughts and you may feel like you are anxious but can't figure out why. You may have trouble sleeping at night. Waking often. Your legs may be busy during the night, in motion a lot more than you ever remember. Many folks suffer with shortness of breath or feeling winded when they exert themselves or climb stairs. You may be more irritable than ever and are behaving completely out of character. Hand tremors and leg pain is common as well. Any of these symptoms in any combination are common with Graves Disease.

Getting the antibodies under control gives almost instant relief from most of these symptoms. Nothing in Thyroid disease happens overnight, it can take several medicine adjustments to start feeling better.

My grandfather had Hashimoto's, my sister is HypoT, two aunts are HypoT and I'm Graves Disease. The point is that Autoimmune Disease can run in a family and each affected person may have a different Thyroid Disease.

Getting your labs, FT3, FT4, TSH, and antibody tests, TPO and TSI will better tell you where you actually are currently. Even though TPO is normally seen in Hashimoto's, it is also seen in 80% of Graves Disease, also.

Out of all the symptoms above, I've had them all at one time or another. I chart my labs with my symptoms. That helps me know where I need to be to feel my best. I take Tapazole 3 times a day.

I hope some of this helps you.

Donna J.

Re: Grave's, preparing for RAI, questions about after

Dear Topper, Sammie & ,

I went ahead a posted some questions on the Graves' site. Do you recommend that I contact my GP and tell him about the outdated testing? Also, should I try to postpone the RAI. I am supposed to go off my meds on April 6th to induce the hyperthyroidism. I have suspected that may be suffering from symptoms of both Hashimotos & Graves. In regards to the effect on my heart--any suggestions as to what is leaving it so vulnerable to racing heart syndrome? A dear friend of mine is a doctor and he is watching this situation from a distance, helping me to be a more effective advocate. That said, it would be great if I could share some of your insights with him, if that's ok. If so, then I would like to give him some possibilities as to why my heart races when it should be more in control.

Here are some other stats: I'm 39, my mother has Hashimotos, two of my cousins have Hashimotos, as well as an aunt. My mother swears that she completed menopause by early 40's, though I'm not sure that her time frame squares with my memories. I have had one full term pregnancy--he's now 13. Outside of the racing heart, my symptoms seem to lean more toward Hashimotos-such as, weight gain, swollen hands, digestive irritations, blah, blah, blah.

I can't tell you how wonderful it is to actually talk this through someone(s). I really appreciate it.

Best,

Carolinetopper2@... wrote:

Carolyn, Sammie has joined us with this and offered links to some Grave's specific groups.. but I'd like to comment on your labs.

Taken at first glance... the TSH range that the lab/doc is using is outdated, by nearly two years... so that kinda shows he/they are behind the times with thyroid info.

I look at your numbers, and, well.. you have to take into consideration that antibodies skew things a bit... but for MOST folks ideals for the frees tend to be having the Free T4 at mid range or slightly higher, and the Free T3 at the top end of the range, or slightly higher... so with your numbers;

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

Mid range would be about 1.34.. you're below that.....

T3, Total (reflex) 130 70-181 ng/dl

Mid range would be about 125, you're barely above that.

That, to me, tends to suggest that they have you suppressed too much (assuming that your body reacts like the majority of folks, and we do know that not everyone falls in that category). But, it's affecting your heart... so the question is why?

There may be other factors involved. We might have to pick at this some more.. but, first... check out the Grave's group and present your concerns to them.. they may have some insites specific for those with Grave's antibodies that would be more helpful.

Topper ()

On Thu, 31 Mar 2005 08:13:32 -0800 (PST) Carolyn Aguila writes:

Topper,

Thank you, again for your help! I've re-typed the patient report--which reflects my last set of bloodwork. I must admit that these numbers/interpretations have always caused me a bit of confusion--so I'm doubly grateful that you're willing to take a look.

Thyroid Tests

Taken on March 4, 2005

TSH Abnormal 0.135 Reference: 0.350-5.100 uIU/ml

TSH Normal Euthyroid

TSH Low plus:

Free T4 Raised Hyperthyroidism

Free T4 Raised, T3 Raised T3 Thyrotoxicosis

Free T4 Normal, T3 Normal Subclinical Hyperthyroidism

Free T4 Low Secondary Hypothyroidism

TSH High plus:

Free T4 Low Hypothyroidism

Free T4 Normal Subclinical Hypothyroidism

Recovery from severe illness

Free T4 Raised Secondary Hyperthyroidism

T4, Free (reflex) Normal 1.10 Reference: 0.89-1.80 ng/dl

T3, Total (reflex) 130 70-181 ng/dl

In about a week, I am scheduled to go off the Meth (which I've been taking for about ten years) and use the beta-blockers to protect my heart while we induce a more active hyperthyroid state. I will have blood tests on April 25th to make sure that I'm in this state. Then on the 27th, I'll have the RAI.

The clinic wants to see me 7 to 10 days after the RAI and no one has actually said anything about "take one a pill and feel fine." However, the clinic told me that this was outpatient and that I'd be able to resume my everyday activities. While I don't have an infant and do not plan on any future pregnancies, I do live with a five year old and a 13 year old, as well as three other adults. Am I putting anyone at risk by having the RAI? How do I avoid any risks?

Best,

Caroline

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.308 / Virus Database: 266.8.6 - Release Date: 3/30/2005