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

[Guest guest]

Using outdated ranges is very very very common.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 Do you recommend that I contact my GP and tell him about the outdated testing?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: 3/30/2005

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

[Guest guest]

I HAD NO IDEA!!!!!!!!

Wow, at 1200 calories and exercising with weights and

cardio, I can't lose weight. I'm at the opposite end

of the spectrum with thyroid surrounding resistance.

Starving is the only way I can lose weight (under 1000

calories). And I've tried it all, low fat diets, low

carb, intense cardio, intense weights.... In fact, a

month after I first tried Atkins, I got thyroid eye

disease. I always wondered if there was a connection.

SAMMIE

--- topper2@... wrote:

> 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

> been

> functionally HypoT always, so I never experienced

> this.

>

>

> SAMMIE

__________________________________

Yahoo! Messenger

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

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

[Guest guest]

I went to the ER that night, thinking that I was having a heart attack, knowing it was inspired by my thyroid. They took really good care of me and I was able to leave the next morning. I took two weeks off from work and felt better until the increased thyroid meds started to bring me down. That said, I would say that the storm lasted for probably for 12 hours. Please note that this was also when they did the tests on my heart, checking for a heart attack. I did not have one and my heart tests came back in good shape. I know that anxiety plays a role in all of this. It's almost like a post-traumatic stress disorder. Also, they gave me a extended-hour Inderol (spelling?) to bring down the heart rate. That through me over the edge emotionally. I could not believe how awful I felt after taking this. They changed that right away, but the effects of it left me bruised. I didn't know that Inderol could exacerbate

depression, which I didn't realize I was suffering from until the thyroid storm. Very Catch-22.

, I also appreciate you taking the time to explain the digestive problems. I am going to call my doc tomorrow and see if I can go back on Prilosec, which worked well two weeks ago. I've been eating plain yogurt in the morning--per the suggestion of a local Greek pharmacist. I also wonder if I should be checked for an ulcer.

Lastly, feel free to contact me about the book. I'll be happy to discuss it.

Caroline

topper2@... wrote:

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]

I really don't understand much about these particular labs. Do you have any former labs, from when they originally said that you were hyper? What I'm seeing here is not hyperthyroid. Also, a good solution would be to go stay in a hotel room where you are using all paper plates, cups, etc...Some have said that you would dispose of these in a very careful way, but I can't remember exactly what was said about this. You can't be around either other adults or children for a few days. This is firm.

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

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 signed up too

Feisty

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

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]

You have to use disposables for anything that you eat or drink from... and even throw away your toothbrush... everything needs to be put in a plastic bag and tied shut, then in another plastic bag and tied shut, then taken outside and disposed of.

A drinking glass can be used once, then must be thrown away NOT refilled, a fresh one must be used.

I'm not real fond of the hotel/motel idea. They are not taking proper precautions with the linens in the bathroom or on the bed, the staff is handling these items unprotected and unaware. And they are being laundered with items that will be used by other folks.. that puts them all at risk for low level contamination.... I would feel really guilty about that. These items should be laundered separate from others, and washed twice..

I guess my solution would be to send the family on a short vacation and set up one room and the bathroom for use during quarantine. Set up disposable eating utensils and prepare single serve meals in advance so that they can just be reheated. Dispose of everything after the meal and disinfect everything touched in the kitchen.

I used an air bed that could be washed after, I put my remote control in a baggy so that I could just dispose of the baggy. I replaced toothbrush, hair brush. I strongly suggest that anyone that does have to go the RAI route that you try your best to schedule things so that you are not having your period during quarantine.. and the items involved with that will also be contaminated and require safe handling and disposal.

sigh.. now I'm thinking back to my quarantine... not a happy time for me... see, on top of everything else the doc said that because I chose to wait so long I could still drop dead from heart attack...

Topper ()

On Thu, 31 Mar 2005 19:52:56 -0600 " " writes:

I really don't understand much about these particular labs. Do you have any former labs, from when they originally said that you were hyper? What I'm seeing here is not hyperthyroid. Also, a good solution would be to go stay in a hotel room where you are using all paper plates, cups, etc...Some have said that you would dispose of these in a very careful way, but I can't remember exactly what was said about this. You can't be around either other adults or children for a few days. This is firm.

[Guest guest]

Very rare, but thyroid eye disease can also be in hypothyroidism....

FeistyWEndy

Re: Grave's, preparing for RAI,

questions about after

>

> 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]

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: 3/30/2005

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

[Guest guest]

You know, Sammie, at a caloric intake that low, you're suppressing your metabolic rate and setting yourself up to gain weight. It has to do with the starvation/survival set points that our bodies have.. when caloric intake is too low the body's number one priority is to turn ALL food taken in to fat...

You might want to do some more thinking on that....

.... just a suggestion....

Topper ()

On Thu, 31 Mar 2005 17:43:35 -0800 (PST) Sammie Baker writes:

I HAD NO IDEA!!!!!!!!Wow, at 1200 calories and exercising with weights andcardio, I can't lose weight. I'm at the opposite endof the spectrum with thyroid surrounding resistance. Starving is the only way I can lose weight (under 1000calories). And I've tried it all, low fat diets, lowcarb, intense cardio, intense weights.... In fact, amonth after I first tried Atkins, I got thyroid eyedisease. I always wondered if there was a connection.SAMMIE

[Guest guest]

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.

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

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.

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

[Guest guest]

I had a major attack one night during a period of time that I had no meds (no insurance) I ended up in emergency.. I couldn't even stand up to walk... I had to crawl to my room mates room to wake them to get him to drive me to the ER.. I had to crawl down the stairs... he helped me inside.... they did all their tests and said nothing was wrong.. my insurance had just kicked in and I was going to be going in for labs and a new prescription the following week.. the jerky ER doc gave me ONE 200 mcg tab of Synthroid that night to get me through until I got my prescription filled..

pretty smart, huh??

Your storm hit harder, faster than mine.. mine built up over several weeks, first sign was a rapid drop in weight that my boss noticed before I did. 40 pounds in 30 days.... I just didn't notice. New job, tons of free food to eat (vending company, we had carte Blanche to chow down) and all I knew was I got to eat all this stuff for free... didn't notice that I was not only NOT gaining but I was losing. But mine lasted about a year, from the time symptoms started until I started to slow after the RAI. I gained back the weight I'd lost plus another hundred pounds in the first year after RAI...

Topper ()

On Thu, 31 Mar 2005 17:47:31 -0800 (PST) Carolyn Aguila writes:

I went to the ER that night, thinking that I was having a heart attack, knowing it was inspired by my thyroid. They took really good care of me and I was able to leave the next morning. I took two weeks off from work and felt better until the increased thyroid meds started to bring me down. That said, I would say that the storm lasted for probably for 12 hours. Please note that this was also when they did the tests on my heart, checking for a heart attack. I did not have one and my heart tests came back in good shape. I know that anxiety plays a role in all of this. It's almost like a post-traumatic stress disorder. Also, they gave me a extended-hour Inderol (spelling?) to bring down the heart rate. That through me over the edge emotionally. I could not believe how awful I felt after taking this. They changed that right away, but the effects of it left me bruised. I didn't know that Inderol could exacerbate depression, which I didn't realize I was suffering from until the thyroid storm. Very Catch-22.

, I also appreciate you taking the time to explain the digestive problems. I am going to call my doc tomorrow and see if I can go back on Prilosec, which worked well two weeks ago. I've been eating plain yogurt in the morning--per the suggestion of a local Greek pharmacist. I also wonder if I should be checked for an ulcer.

Lastly, feel free to contact me about the book. I'll be happy to discuss it.

Caroline

[Guest guest]

>>Very rare, but thyroid eye disease can also be in hypothyroidism....<<

HMMM this really makes me wonder! I can go back through family pictures and see the thyroid disease in my family. The staring eyes, but they all ended up hypo, and none ever had any antithyroid meds and only one surgery. I have the bulging eyes, but not bad, and then after they became prominent I got hypo, so I wonder if the antibodies didnt; attack my eyes during a hyper stage of Hashi's.

*Artistic Grooming * Hurricane, WVFat cat? Diabetes? Listowner for overweight or hypothyroid catshttp://groups.yahoo.com/group/hypokitties/

[Guest guest]

copy cat!!! hehehehhehehee

Topper ()

On Thu, 31 Mar 2005 20:11:50 -0600 "Feisty\(ThyroFeisty\)" writes:

I signed up too

Feisty

[Guest guest]

Congratulations on your book. Just remember to get rest, eat properly, take your meds as required and remember, you will need energy to write the next book, so don't sweat the little things...don't try to manage the whole world, just your little speck of it. Find the joy in your success and sharing your talent.

Try to maintain an upbeat attitude. Remember, that you are not the sum total of Thyroid Disease.

You have gotten some really good advice today. I hope you feel better informed of your choices and empowered to take charge of your treatment.

Be sure and let us know the title of your book, so we can have a read.

Donna J.

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

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

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

[Guest guest]

Yes, I've heard that. And frankly that's the only

thing that makes sense in my case.

SAMMIE

--- " Feisty(ThyroFeisty) "

wrote:

> Very rare, but thyroid eye disease can also be in

> hypothyroidism....

> FeistyWEndy

> Re: Grave's,

> preparing for RAI,

> questions about after

>

>

> >

> > 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]

Graves Disease and Graves Eye Disease are two separate diseases. They just coincide at the same time. The common link is the antibodies. The antibodies attack the thyroid and attack the eyes. The antibodies don't migrate to the eyes from the thyroid. They can be in the eyes first before you ever notice anything going on with the Thyroid. There is a bad gene that causes a person to form the Autoantibody that attacks self. These antibodies are just directed at these two locations.

In my personal case. I had double vision that was my first diagnosis of TED. After labs diagnosed with Graves. The ATD prescribed to get my thyroid function back to normal or into remission has the added side effect of helping to slow the antibodies attacking my eyes. Having said if I stopped the ATD's or go into HypoT, the antibodies will increase and thus my eyes would worsen again. It's much easier to get the thyroid under control than it is the eyes. Once muscle damage is done to the eyes, it takes a lot to correct that. Sometimes even surgery.

Donna J.

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

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

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

[Guest guest]

Yes, I was doing this years ago when I was HypoT (and

not diagnosed). When your thyroid is that low, it

really is impossible to lose weight. And I was surely

making it worse. But, you wont believe this, I was

going to a doc under these diet guidelines!! It's

amazing what we'll buy into when a person in a white

coat speaks to us. But I had tried every diet and it

didn't work. My friend has seen this doc and lost a

ton of weight (obviously), so I ran to his office.

I got thyroid eye disease in July of 2003, one month

after I started the Atkins diet. I was eating

1200-1500 calories, doing cardio and weights and

didn't lose weight. With the TED, we assume I was

HyperT or at least in the normal ranges, so I want to

know why I didn't lose weight. And I counted

calories, carbs, protein and fat and weighed my food.

I wasn't over-eating.

It's an awful mystery. However, my holistic doc says

that though my case is unusual, he's seen it before.

If I knew what to do to fix it, I would. But I feel

like I've tried everything.

SAMMIE

--- topper2@... wrote:

> You know, Sammie, at a caloric intake that low,

> you're suppressing your

> metabolic rate and setting yourself up to gain

> weight. It has to do with

> the starvation/survival set points that our bodies

> have.. when caloric

> intake is too low the body's number one priority is

> to turn ALL food

> taken in to fat...

>

> You might want to do some more thinking on that....

>

> ... just a suggestion....

>

> Topper ()

>

> On Thu, 31 Mar 2005 17:43:35 -0800 (PST) Sammie

> Baker

> writes:

> I HAD NO IDEA!!!!!!!!

>

> Wow, at 1200 calories and exercising with weights

> and

> cardio, I can't lose weight. I'm at the opposite

> end

> of the spectrum with thyroid surrounding resistance.

>

> Starving is the only way I can lose weight (under

> 1000

> calories). And I've tried it all, low fat diets,

> low

> carb, intense cardio, intense weights.... In fact,

> a

> month after I first tried Atkins, I got thyroid eye

> disease. I always wondered if there was a

> connection.

>

>

> SAMMIE

__________________________________

Yahoo! Messenger

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

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

[Guest guest]

I may have signed up before you did, Pard!

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

copy cat!!! hehehehhehehee

Topper ()

On Thu, 31 Mar 2005 20:11:50 -0600 "Feisty\(ThyroFeisty\)" writes:

I signed up too

Feisty

[Guest guest]

But can regular soap and water actually get rid of radiation? This question has passed in and out of my mind on occasion, so now I'm asking it. My understanding about radiation is that really nothing actually "kills" it, except for time, and noone tells anyone this. The deal to me, the way I see it, is that we're taking all these precautions, even for ourselves (by not using anything more than once), yet the stuff was and is actually already inside our bodies, so protecting ourSELVES from it is sort of a moot point, isn't it? I know that the nuking of the thyroid is sometimes a necessary evil, but I've never seen anything safe about it, period. The alternative, however, is sudden death for some folks, so they have to have it. Protecting OTHER people from it, though, is another matter. Why expose them to what we're going to be exposed to? Thing of it is, though, sometimes a person has no choice of where they go when they leave the hospital because there's either home or a motel, nowhere to go. I do see the point, however, of the motel people being unaware of things. I would have no problem, as noone lives with me at this point, but I have a big question about whether that radiation is EVER actually gone from one's home OR person.

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

You have to use disposables for anything that you eat or drink from... and even throw away your toothbrush... everything needs to be put in a plastic bag and tied shut, then in another plastic bag and tied shut, then taken outside and disposed of.

A drinking glass can be used once, then must be thrown away NOT refilled, a fresh one must be used.

I'm not real fond of the hotel/motel idea. They are not taking proper precautions with the linens in the bathroom or on the bed, the staff is handling these items unprotected and unaware. And they are being laundered with items that will be used by other folks.. that puts them all at risk for low level contamination.... I would feel really guilty about that. These items should be laundered separate from others, and washed twice..

I guess my solution would be to send the family on a short vacation and set up one room and the bathroom for use during quarantine. Set up disposable eating utensils and prepare single serve meals in advance so that they can just be reheated. Dispose of everything after the meal and disinfect everything touched in the kitchen.

I used an air bed that could be washed after, I put my remote control in a baggy so that I could just dispose of the baggy. I replaced toothbrush, hair brush. I strongly suggest that anyone that does have to go the RAI route that you try your best to schedule things so that you are not having your period during quarantine.. and the items involved with that will also be contaminated and require safe handling and disposal.

sigh.. now I'm thinking back to my quarantine... not a happy time for me... see, on top of everything else the doc said that because I chose to wait so long I could still drop dead from heart attack...

Topper ()

On Thu, 31 Mar 2005 19:52:56 -0600 " " writes:

I really don't understand much about these particular labs. Do you have any former labs, from when they originally said that you were hyper? What I'm seeing here is not hyperthyroid. Also, a good solution would be to go stay in a hotel room where you are using all paper plates, cups, etc...Some have said that you would dispose of these in a very careful way, but I can't remember exactly what was said about this. You can't be around either other adults or children for a few days. This is firm.

[Guest guest]

It's my understanding that the cleaning of the skin and clothing, double washing everything and not letting it sit is 'supposed' to dilute it with water and move it from the skin, clothing, toilet, shower, whatever and down the drain, at that points it's supposedly diluted to a point where it is no longer harmful.

If you don't keep yourself washed and clothing changed and cleaned you reabsorb it into your own body, increasing the amount of exposure that you already had from the treatment.

I'm not saying it's right.. I think it's totally dependant on the individual circumstance.

Having lived the last 15 years with NO gland function I can honestly say it SUCKS. You are totally dependant on the medication you are taking, there is absolutely no fall back, no buffer. I have NO gland function that will kick in during high stress/increased physical activity... lack of meds... there's nothing there to help out.

On the one hand it makes dosing easier, there is no fluctuating gland to deal with (which is why most docs opt for removing or destroying the gland, it's easier for them) but it's scary knowing that I'm dependant on what I take and that what I take won't show it's full effect (of too much or too little for weeks, or more, after I've messed up a dose, got a bad batch of pills, or had a life style change that was significant enough to alter my bodies demand for thyroid)

Even significant increases or decreases in weight affect how much hormone you need, part of the reason we need to be tested each year to adjust dose. The sad part is that most docs don't understand how to interpret labs and never adjust the dose... that's what happened to me... I kept gaining weight and no one ever increased my dose. (I'm talking over a hundred pounds, not just 10 or 15 here or there). It has to do with the volume of blood and the density of hormone in the blood that determines it's concentration at the cellular level and how it's distributed to the cells. Your body organs and active tissues are the same but the blood volume increases, diluting the hormone. Don't you just LOVE chemistry???? that's why you can't simply say that a woman gets this much and a man gets this much... it depends on too many factors, blood volume, organ efficiency, regional variations in diet and climate, even activity levels and the basic genetics of your metabolism and how your body processes things.

There has to be a better way to do this, I think they should start with determining why the percentage of the population affected by thyroid disorder is increasing and do something with that cause/source. I mean, how many mom's with thyroid disorder are informed of the potential risks to their unborn babies and how they many, or may not, be affected as the grow? Very, very few.... but at least they are now screening new borns for obviously whacked hormone levels, it's a small start.

Sigh... now I'm back to fifteen years ago... getting forced to do something that I had no choices or options for......

Topper ()

On Sat, 2 Apr 2005 16:17:39 -0600 " " writes:

But can regular soap and water actually get rid of radiation? This question has passed in and out of my mind on occasion, so now I'm asking it. My understanding about radiation is that really nothing actually "kills" it, except for time, and noone tells anyone this. The deal to me, the way I see it, is that we're taking all these precautions, even for ourselves (by not using anything more than once), yet the stuff was and is actually already inside our bodies, so protecting ourSELVES from it is sort of a moot point, isn't it? I know that the nuking of the thyroid is sometimes a necessary evil, but I've never seen anything safe about it, period. The alternative, however, is sudden death for some folks, so they have to have it. Protecting OTHER people from it, though, is another matter. Why expose them to what we're going to be exposed to? Thing of it is, though, sometimes a person has no choice of where they go when they leave the hospital because there's either home or a motel, nowhere to go. I do see the point, however, of the motel people being unaware of things. I would have no problem, as noone lives with me at this point, but I have a big question about whether that radiation is EVER actually gone from one's home OR person.