New to the group

[Guest guest]

Thank you Pierre for responding. The neph did not mention crescents. He

just told me that some of the latest studies he had seen had the best success

with prednisone and cytoxin together. Who am I to dispute this. He seems

knowledgeable but I'm still curious to see if anyone in the group is on this

combination at these doseages and if so what kind of luck they've had. I think

he

felt I could handle the high meds at my age, but strangely enough he told me to

keep my protein below 80g a day but then told me not to worry about sodium and

pottasium. But I'm watching my sodium anyway.

Thanks again, Mike.

[Guest guest]

Hi Mike

I just wanted to welcome you to the group, first of all.

There are many people here who have much experience taking the drugs you are

on. I'll let them answer, and if there are any remaining questions, maybe I

can tackle them.

One thing to realize about your treatment is that you have fairly good

kidney funciton, with your primary problem right now being the rather heavy

proteinuria. As I explain on www.igan.ca , there is no specific treatment

for IgAN, but there IS for heavy proteinuria. This is why you have been

prescribed the prednisone, primarily, I would think. The cytoxan I'm not

sure about, because it's kind of unusual (not dramatically unusual, just not

that common) to start that without giving just prednisone a chance first, to

see if you respond. Was there anything particular about your biopsy results,

beyond just saying you have IgAN. Any mention of " crescents " , for example?

One element about treating any disease for which there isn't a " specific "

treatment, and for which medical science is still not quite there, is that

treatment approaches can vary from one doctor to the next. Some are more

aggressive, others aren't. Some if this difference is the result of

different ideas about risks vs benefits of various drugs under various

circumstances. There are some doctors who are really into prescribing

things, and others who don't like to prescribe something unless there's a

clear benefit to doing so.

I'll try to address the shortness of breath issue in another messages.

The one thing we know for sure about IgAN is that, you never get enough time

with your nephrologist to have ALL of your questions answered. That's why

we're here (and www.igan.ca too)

Pierre

List-owner

New to the group

> Hi everyone, My name is Mike. I am a 35yo male just diagnosed this

> week with IGAN. My neph told me how variable the disease can be, and

> in reading your messages I have seen that, with some people not

> taking any medication at all or just a BP med and some currently or

> just completing prednisone and then some who are on dialysis or have

> had a transplant. Wherever I end up on the scale, the group seems

> like it will be an extremely valuable tool to gain information, so

> thank you to the organizers and all who post.

> My protein is 3.1 and my CCR is 73. My first question is to my meds,

> I have been on 5mg lisinopril for about a month since my BP first

> went up, now after the biopsy I have been moved up to 10mg daily. I

> was prescribed 80mg daily prednisone and 200mg cytoxan. Also 1 30mg

> prevacid daily. It seems like most of the messages I have read

> people are on much smaller doses than 80mg a day. As of yet also, I

> haven't encountered anyone who is on both pred. and cytoxan. Is that

> common?Also, I have started taking fish oil but I don't know how much

> I should be taking and was wondering what dosage most people are

> taking. My last question on meds is the pred. is 4 caps a day of 20

> mg. Do they make it in any bigger increments, do they make it at all

> in a coated form, and if not what's the best chaser to have after b/c

> it is got a nasty aftertaste.

> As to the side effects, so far after 4 days they have been mild. I

> teach tennis for a living and have had some calf soreness that I

> haven't had before. I had three small bouts of hiccups yesterday

> that went away quickly and I'm having slight trouble with shortness

> of breath while playing. Will these side effects keep ramping up or

> do you get them right off the bat? I am mainly worried about the

> shortness of breath in my profession and the neph told me I could

> potentially lose hair. My last question is the prednisone warnings

> state that I should avoid prolonged exposure to direct sunlight which

> is hard to do teaching tennis in Florida. Has anyone had any side

> effects from overexposure to the sun?

> Well I'm sorry to ask so many questions right away. It seems as

> though I asked my neph. about a hundred questions and yet more seem

> to pop up all the time. Thanks for taking the time to read my post!

> Mike

>

>

[Guest guest]

Hi Mike

I just wanted to welcome you to the group, first of all.

There are many people here who have much experience taking the drugs you are

on. I'll let them answer, and if there are any remaining questions, maybe I

can tackle them.

One thing to realize about your treatment is that you have fairly good

kidney funciton, with your primary problem right now being the rather heavy

proteinuria. As I explain on www.igan.ca , there is no specific treatment

for IgAN, but there IS for heavy proteinuria. This is why you have been

prescribed the prednisone, primarily, I would think. The cytoxan I'm not

sure about, because it's kind of unusual (not dramatically unusual, just not

that common) to start that without giving just prednisone a chance first, to

see if you respond. Was there anything particular about your biopsy results,

beyond just saying you have IgAN. Any mention of " crescents " , for example?

One element about treating any disease for which there isn't a " specific "

treatment, and for which medical science is still not quite there, is that

treatment approaches can vary from one doctor to the next. Some are more

aggressive, others aren't. Some if this difference is the result of

different ideas about risks vs benefits of various drugs under various

circumstances. There are some doctors who are really into prescribing

things, and others who don't like to prescribe something unless there's a

clear benefit to doing so.

I'll try to address the shortness of breath issue in another messages.

The one thing we know for sure about IgAN is that, you never get enough time

with your nephrologist to have ALL of your questions answered. That's why

we're here (and www.igan.ca too)

Pierre

List-owner

New to the group

> Hi everyone, My name is Mike. I am a 35yo male just diagnosed this

> week with IGAN. My neph told me how variable the disease can be, and

> in reading your messages I have seen that, with some people not

> taking any medication at all or just a BP med and some currently or

> just completing prednisone and then some who are on dialysis or have

> had a transplant. Wherever I end up on the scale, the group seems

> like it will be an extremely valuable tool to gain information, so

> thank you to the organizers and all who post.

> My protein is 3.1 and my CCR is 73. My first question is to my meds,

> I have been on 5mg lisinopril for about a month since my BP first

> went up, now after the biopsy I have been moved up to 10mg daily. I

> was prescribed 80mg daily prednisone and 200mg cytoxan. Also 1 30mg

> prevacid daily. It seems like most of the messages I have read

> people are on much smaller doses than 80mg a day. As of yet also, I

> haven't encountered anyone who is on both pred. and cytoxan. Is that

> common?Also, I have started taking fish oil but I don't know how much

> I should be taking and was wondering what dosage most people are

> taking. My last question on meds is the pred. is 4 caps a day of 20

> mg. Do they make it in any bigger increments, do they make it at all

> in a coated form, and if not what's the best chaser to have after b/c

> it is got a nasty aftertaste.

> As to the side effects, so far after 4 days they have been mild. I

> teach tennis for a living and have had some calf soreness that I

> haven't had before. I had three small bouts of hiccups yesterday

> that went away quickly and I'm having slight trouble with shortness

> of breath while playing. Will these side effects keep ramping up or

> do you get them right off the bat? I am mainly worried about the

> shortness of breath in my profession and the neph told me I could

> potentially lose hair. My last question is the prednisone warnings

> state that I should avoid prolonged exposure to direct sunlight which

> is hard to do teaching tennis in Florida. Has anyone had any side

> effects from overexposure to the sun?

> Well I'm sorry to ask so many questions right away. It seems as

> though I asked my neph. about a hundred questions and yet more seem

> to pop up all the time. Thanks for taking the time to read my post!

> Mike

>

>

[Guest guest]

Hi Mike,

First off welcome to the group, I'm glad you found us. You are so right

about the range of people we have here, it makes this place wonderful for asking

questions.

Your lisinopril dose may actually have to be increased further as the

prednisone works into your system. Don't sweat it, it's normal. Prednisone

causes your b/p to rise so you have to go on higher doses of lisinopril or other

meds to counter it. As your prednisone dose drops you should be able to lower

your doses of b/p meds again. I started on 80mg of prednisone back in Oct '03

(I have never been on the combo with cytoxan though) as time went on I went from

5mg of lisinopril all the way up to 40mg and then had to add a second b/p med

(Cardizem LA 180mg) on top of it to keep my b/p down. Now that I've been weaned

down to 5mg daily on the pred my lisinopril dose is down to 7.5mg daily and I no

longer have to take the Cardizem. The thing to remember is take what you need

to to keep your b/p down within the range your neph wants to see it. The higher

your b/p runs the more damage it will be doing to your kidneys. The one thing

we can control is our b/p. If you haven't already please consider a home b/p

machine to monitor your blood pressure, it's important to keep up with it during

med changes.

As for the fish oil I would give your neph a call and ask how much he wants

you taking. I'm on 6g daily others here are on 12g or anywhere in-between.

The prednisone only comes in 20mg tablets. You can purchase empty capsule

cases at many health food stores or pharmacies. Put your 4 tablets into an

empty capsule casing and viola no aftertaste in your mouth. I can't take credit

for that idea I think it was Cy who brought this trick up. It works wonders as

the stuff does taste nasty.

The side effects from the prednisone can sneak up on you over time. I had

quite a few annoying side effects but nothing that was more than an

annoyance...like shaking a lot, or hair falling out, or acne, or severe knee

cramping. I would concern yourself with the sun exposure. If you can wear a

hat and very good sunscreen...or even a lightweight long-sleeved shirt something

in lightweight gauze or linen. I avoided the sun when I was on high doses, now

I try to go out late in the afternoon or very early morning to avoid the

10am-2pm strong sunlight.

Please feel free to ask away with questions, that's what we are here for. )

And welcome again!

Amy

New to the group

Hi everyone, My name is Mike. I am a 35yo male just diagnosed this

week with IGAN. My neph told me how variable the disease can be, and

in reading your messages I have seen that, with some people not

taking any medication at all or just a BP med and some currently or

just completing prednisone and then some who are on dialysis or have

had a transplant. Wherever I end up on the scale, the group seems

like it will be an extremely valuable tool to gain information, so

thank you to the organizers and all who post.

My protein is 3.1 and my CCR is 73. My first question is to my meds,

I have been on 5mg lisinopril for about a month since my BP first

went up, now after the biopsy I have been moved up to 10mg daily. I

was prescribed 80mg daily prednisone and 200mg cytoxan. Also 1 30mg

prevacid daily. It seems like most of the messages I have read

people are on much smaller doses than 80mg a day. As of yet also, I

haven't encountered anyone who is on both pred. and cytoxan. Is that

common?Also, I have started taking fish oil but I don't know how much

I should be taking and was wondering what dosage most people are

taking. My last question on meds is the pred. is 4 caps a day of 20

mg. Do they make it in any bigger increments, do they make it at all

in a coated form, and if not what's the best chaser to have after b/c

it is got a nasty aftertaste.

As to the side effects, so far after 4 days they have been mild. I

teach tennis for a living and have had some calf soreness that I

haven't had before. I had three small bouts of hiccups yesterday

that went away quickly and I'm having slight trouble with shortness

of breath while playing. Will these side effects keep ramping up or

do you get them right off the bat? I am mainly worried about the

shortness of breath in my profession and the neph told me I could

potentially lose hair. My last question is the prednisone warnings

state that I should avoid prolonged exposure to direct sunlight which

is hard to do teaching tennis in Florida. Has anyone had any side

effects from overexposure to the sun?

Well I'm sorry to ask so many questions right away. It seems as

though I asked my neph. about a hundred questions and yet more seem

to pop up all the time. Thanks for taking the time to read my post!

Mike

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Thank you

[Guest guest]

My son was on Cytoxan and prednisone for an IgAN flare-up after

transplant. He got an IV infusion of Cytoxan once a month and 60 mg.

prednisone daily at the beginning, which was tapered down to 20 mg./day

as I recall. The combination was very effective for him. It

dramatically reduced proteinuria and brought his creatinine down as

well.

Betsy

> Thank you Pierre for responding.  The neph did not mention crescents. 

> He

> just told me that some of the latest studies he had seen had the best

> success

> with prednisone and cytoxin together.  Who am I to dispute this.  He

> seems

> knowledgeable but I'm still curious to see if anyone in the group is

> on this

> combination at these doseages and if so what kind of luck they've

> had.  I think he

> felt I could handle the high meds at my age, but strangely enough he

> told me to

> keep my protein below 80g a day but then told me not to worry about

> sodium and

> pottasium.  But I'm watching my sodium anyway.

> Thanks again, Mike.

>

>

>

[Guest guest]

My son was on Cytoxan and prednisone for an IgAN flare-up after

transplant. He got an IV infusion of Cytoxan once a month and 60 mg.

prednisone daily at the beginning, which was tapered down to 20 mg./day

as I recall. The combination was very effective for him. It

dramatically reduced proteinuria and brought his creatinine down as

well.

Betsy

> Thank you Pierre for responding.  The neph did not mention crescents. 

> He

> just told me that some of the latest studies he had seen had the best

> success

> with prednisone and cytoxin together.  Who am I to dispute this.  He

> seems

> knowledgeable but I'm still curious to see if anyone in the group is

> on this

> combination at these doseages and if so what kind of luck they've

> had.  I think he

> felt I could handle the high meds at my age, but strangely enough he

> told me to

> keep my protein below 80g a day but then told me not to worry about

> sodium and

> pottasium.  But I'm watching my sodium anyway.

> Thanks again, Mike.

>

>

>

[Guest guest]

Thanks everyone for writing me back with so much info, I really appreciate

it. Thank you Amy and Cy for recommending the capsule casings, I am definetly

going to try that. Does that affect the time in which I should eat? I would

think they would break down in about 1/2 and hour.

Thanks also to you , the O.J. I have already tried and it was much

more tolerable with the pred. I don't know what it is with water and pred, but

it's nasty together. And and Pierre thank you for your responses, I am

currently at 1.6 creatin, which because I am a big guy my neph says is a little

over where I should be. He said the normal is up to 1.5 but I have also seen

it stated to 1.2. And both of you mentioned " crescents " . I had never heard

of this before. I called my neph's office because the office manager is an

old client of mine. She didn't seem to know what it was, and asked me how to

spell it. Should I be worried about that? She said she would look it up on the

biopsy for me. I also asked for copies of all my blood tests, biopsy work,

etc. I can see that everyone in this room is very good about knowing all their

numbers so I need to get with it! I also did check out the igan.ca site and

the fish oil info was most helpful.

Also, thank you Betsy you are the only one so far who has told me about the

combination of pred. and cytoxan being used. I'm glad it was effective for

your son. It gives me hope.

Pierre, you said you were going to also bring up the shortness of breath

situation a little later. If you have time I would love to know what happens

with

this and if you keep exercising if it goes away. Playing tennis after

teaching has really helped me keep my BP low and my weight in check so I hate to

have to slow down at all.

Thanks to all.

Mike

[Guest guest]

Thanks everyone for writing me back with so much info, I really appreciate

it. Thank you Amy and Cy for recommending the capsule casings, I am definetly

going to try that. Does that affect the time in which I should eat? I would

think they would break down in about 1/2 and hour.

Thanks also to you , the O.J. I have already tried and it was much

more tolerable with the pred. I don't know what it is with water and pred, but

it's nasty together. And and Pierre thank you for your responses, I am

currently at 1.6 creatin, which because I am a big guy my neph says is a little

over where I should be. He said the normal is up to 1.5 but I have also seen

it stated to 1.2. And both of you mentioned " crescents " . I had never heard

of this before. I called my neph's office because the office manager is an

old client of mine. She didn't seem to know what it was, and asked me how to

spell it. Should I be worried about that? She said she would look it up on the

biopsy for me. I also asked for copies of all my blood tests, biopsy work,

etc. I can see that everyone in this room is very good about knowing all their

numbers so I need to get with it! I also did check out the igan.ca site and

the fish oil info was most helpful.

Also, thank you Betsy you are the only one so far who has told me about the

combination of pred. and cytoxan being used. I'm glad it was effective for

your son. It gives me hope.

Pierre, you said you were going to also bring up the shortness of breath

situation a little later. If you have time I would love to know what happens

with

this and if you keep exercising if it goes away. Playing tennis after

teaching has really helped me keep my BP low and my weight in check so I hate to

have to slow down at all.

Thanks to all.

Mike

[Guest guest]

Thanks everyone for writing me back with so much info, I really appreciate

it. Thank you Amy and Cy for recommending the capsule casings, I am definetly

going to try that. Does that affect the time in which I should eat? I would

think they would break down in about 1/2 and hour.

Thanks also to you , the O.J. I have already tried and it was much

more tolerable with the pred. I don't know what it is with water and pred, but

it's nasty together. And and Pierre thank you for your responses, I am

currently at 1.6 creatin, which because I am a big guy my neph says is a little

over where I should be. He said the normal is up to 1.5 but I have also seen

it stated to 1.2. And both of you mentioned " crescents " . I had never heard

of this before. I called my neph's office because the office manager is an

old client of mine. She didn't seem to know what it was, and asked me how to

spell it. Should I be worried about that? She said she would look it up on the

biopsy for me. I also asked for copies of all my blood tests, biopsy work,

etc. I can see that everyone in this room is very good about knowing all their

numbers so I need to get with it! I also did check out the igan.ca site and

the fish oil info was most helpful.

Also, thank you Betsy you are the only one so far who has told me about the

combination of pred. and cytoxan being used. I'm glad it was effective for

your son. It gives me hope.

Pierre, you said you were going to also bring up the shortness of breath

situation a little later. If you have time I would love to know what happens

with

this and if you keep exercising if it goes away. Playing tennis after

teaching has really helped me keep my BP low and my weight in check so I hate to

have to slow down at all.

Thanks to all.

Mike

[Guest guest]

Hi Mike,

First, and most importantly, a creatinine of 1.6 is extremely good,

especially since you are a large male. That is great news.

The crescents we were referring to would have showed up on the tissue slides

from your biopsy is there were any. The presence of crescents indicates a

worse outcome than if there is scarring without them. If you have them, it will

be noted on your biopsy report when you get that. I thought perhaps you might

because Cytoxan is usually reserved for treating someone with an aggressive

case of IgAN. More commonly, high protein is treated with Prednisone first.

As for shortness of breath, I am a jogger, and I feel it when I am more

anemic. With your kidney function, I would very seriously doubt you are anemic.

That usually does not happen until you are around 30% kidney function if at all,

and some like Pierre make it all the way to dialysis before needing treatment

for anemia. I am not sure if shortness of breath is recognized as a side

effect of Prednisone or Cytoxan. You should mention it to your Nephrologist

just

to make sure he is aware of it though.

[Guest guest]

Hi Mike,

First, and most importantly, a creatinine of 1.6 is extremely good,

especially since you are a large male. That is great news.

The crescents we were referring to would have showed up on the tissue slides

from your biopsy is there were any. The presence of crescents indicates a

worse outcome than if there is scarring without them. If you have them, it will

be noted on your biopsy report when you get that. I thought perhaps you might

because Cytoxan is usually reserved for treating someone with an aggressive

case of IgAN. More commonly, high protein is treated with Prednisone first.

As for shortness of breath, I am a jogger, and I feel it when I am more

anemic. With your kidney function, I would very seriously doubt you are anemic.

That usually does not happen until you are around 30% kidney function if at all,

and some like Pierre make it all the way to dialysis before needing treatment

for anemia. I am not sure if shortness of breath is recognized as a side

effect of Prednisone or Cytoxan. You should mention it to your Nephrologist

just

to make sure he is aware of it though.

[Guest guest]

Hi Mike,

First, and most importantly, a creatinine of 1.6 is extremely good,

especially since you are a large male. That is great news.

The crescents we were referring to would have showed up on the tissue slides

from your biopsy is there were any. The presence of crescents indicates a

worse outcome than if there is scarring without them. If you have them, it will

be noted on your biopsy report when you get that. I thought perhaps you might

because Cytoxan is usually reserved for treating someone with an aggressive

case of IgAN. More commonly, high protein is treated with Prednisone first.

As for shortness of breath, I am a jogger, and I feel it when I am more

anemic. With your kidney function, I would very seriously doubt you are anemic.

That usually does not happen until you are around 30% kidney function if at all,

and some like Pierre make it all the way to dialysis before needing treatment

for anemia. I am not sure if shortness of breath is recognized as a side

effect of Prednisone or Cytoxan. You should mention it to your Nephrologist

just

to make sure he is aware of it though.

[Guest guest]

Hi, , Welcome to our little family....

You have labs coming up so it will be a good opportunity to get the right tests done....

Most docs seem to think that testing TSH alone is just fine and dandy... but, unfortunately for us it's not.

TSH is a pituitary hormone, not a thyroid hormone. The Pituitary releases TSH to signal the thyroid gland to produce more hormone. The higher the TSH the more hormone your body needs.

Once you are on replacement, and especially when you don't have much left for thyroid function, this number doesn't really tell you what you need to know.

What you need to know are the Free T4 and the Free T3 levels in your blood.

Free T4 is the amount of T4 (thyroid storage hormone) that is in your blood and available for your body to store. It's stored throughout your body in your tissues where it waits until you need it to be converted.

Free T3 is the amount of T3 (active thyroid hormone) that is in your blood and available for your body to use.

T3 is made during a conversion process that occurs at the cellular level from T4.

T4 contains 4 iodine molecules. During conversion one of the iodine molecules is pulled away leaving a T3. T3 is the hormone that is used the most throughout your body.

There are two other thyroid hormones that are also made through this same conversion process. An iodine molecule is removed from a T3 to produce a T2.... and another iodine molecule can be removed from a T2 to produce a T1.

If your body is unable to convert hormone you will continue to have symptoms of low thyroid, hypothyroid. If you don't get enough replacement to begin with (the amount of Synthroid that you are taking) you won't have enough available for conversion and you will have symptoms of low thyroid.

You are taking a synthetic thyroid hormone, Levoxyl, that contains only synthetic T4 hormone. So not only do you need to take enough of it.... you need to be sure that your body is converting it efficiently enough for you to be well.

So... the tests that you need are:

TSH, Thyroid Stimulating Hormone, to see how panicked your body may or may not be about your thyroid hormone levels.

Free T4, Thyroid Storage Hormone, to see if your dosage is high enough to give you the hormone that your body needs to work with to produce the hormones that it needs to function.

Free T3, Active Thyroid Hormone, to see how well your body is able to convert hormone. This will also let you know if you have enough active hormone available to be converted to T2 (which is linked to metabolism) and T1 (which is linked to Brain Function).

You want to make sure that you doc is, at the VERY least, checking TSH, Free T4, and Free T3.

Yep... I know I just said the same thing more than once, three I think... but I did that because it's that important.

What diagnosis did they give you as the reason to remove your thyroid gland?

Synthetic thyroid, like the Levoxyl that you are taking as well as Synthroid and several others, are synthetic hormone. During the manufacturing process they have a sodium molecule added to the T4 (the make it more shelf stable). Your body must remove that sodium molecule for the T4 to be available to you body. So you need to take it on an empty stomach. That means 4 hours after eating or 1 hour before. How you take the med affects how it will, or will not work for you.

Armour thyroid is a natural thyroid product, there are also generics of it. It is basically freeze dried thyroid gland from a pig. (whole fancy process involved there, I just put it in simple terms). It's already in a natural form and ready to be used by your body. It contains not only the storage hormone, T4, but also contains T3, T2, and T1 as well as another hormone that your body can't make at all, Calcitonin, which is used by your body to pull Calcium from your blood and put it back into your bones, keeping them strong and healthy.

Some folks do well on synthetics, many do not. For those that aren't able to convert adequately they find that by taking either a synthetic T4/T3 combo or by switching to a natural thyroid that contains all the hormones that they do better.

The body still has to convert hormone, even when taking natural, but with the extra hormones that are in the natural we get a jump start.

Since you have had your thyroid removed. It's especially important that you have a source of Calcitonin. That would mean that you may find that natural would be better for you. Although, to be fair, there is now a nasal spray that is available that will give you Calcitonin.

It would be wise to have a bone scan, now, to give you a base line to use in the future so that if there should be an issue with your bones you will have something to compare to.

Most docs don't want to do bone scans.

Most docs don't want to test Free T3 and Free T4.

Most docs don't understand that 'in normal range' for your levels is not good enough .... it's where your levels are in the range for TSH, Free T3, and Free T4 AND how you feel ... that tells if your are getting a sufficient amount of replacement hormone.

I probably hit you with a lot of stuff that hasn't sunk in yet, made sense yet... it does get confusing... so ask about anything that you would like someone to run over again, or from a different angle so that it makes sense to you.

You are your best resource for both information and determination when it comes to your health, so the more you ask, the more you learn, the better job you will do.

We have a web page set up that runs through the hormones, the tests and the meds so that you can review them any time you want... swing by when you have some time. www.thyrophoenix.com/thyroid_101.htm

We also have a page that explains a bit about what you can do to tell, in between labs, how your body is doing... www.thyrophoenix.com/self_monitor.htm

It's a good, very good, idea to take notes with you to the doc. Write down your questions and leave space after them to write the doc's response. Don't worry too much about spelling, just scribble it down as best you can, we'll help you to decipher your notes afterwards and explain it better.

Take notes about anything else the doc talks about... we can help you understand that too.

It's hard, with some docs, to get them to test the Frees but it's very very important that they be tested... be firm, be prepared, if needed, to find a doc that understands PROPER thyroid care and will test you....

Find out what your diagnosis was/is.... what determined that they had to remove your gland.

Find out when he/she wants you to come back for follow up labs.

I feel that a doc that will ONLY prescribe synthetic probably doesnt' understand much about thyroid care and may not be willing to help you to feel better. This isn't specifically a bash against synthetic, although I do that a lot (my own opinion here) but that a doc that will stick with only one hormone source may not be as educated in proper thyroid care as needed to make you feel well.

Well... I'll stop here with just one request of you, for now.... can you post your last labs, with lab ranges, for us to see?

..... now you get to form more questions and have at us!!!! hehehehehe

Topper ()

On Wed, 06 Jul 2005 17:07:05 -0000 "Tell ya later" writes:

Hi I found your group last night and am so glad I did. I had my thryoid taken out a year ago last Feb. I have felt much worse after having it out than I did before. I went to the doctor because I was gaining alot of weight and didn't know why. One week later I was having my thyroid taken out. I don't understand all the things you guys are talking about with T3 and T4 and all. Noone has ever explained all this to me. I moved to a new town a few months ago and have a new docter now. He uped my med. to 150 Levoxyl from 125. I have to go back this Tuesday to have bloodwork done again. What are some questions that I need to be asking? What is the Armour medicine I keep reading about. I have gained about 70 pounds in the last year and a half. I am tired all the time and get depressed at times. My joints hurt all the time now. I was never like this before. Help!!! Thanks for any information you guys can gice me.

[Guest guest]

Hi, , Welcome to our little family....

You have labs coming up so it will be a good opportunity to get the right tests done....

Most docs seem to think that testing TSH alone is just fine and dandy... but, unfortunately for us it's not.

TSH is a pituitary hormone, not a thyroid hormone. The Pituitary releases TSH to signal the thyroid gland to produce more hormone. The higher the TSH the more hormone your body needs.

Once you are on replacement, and especially when you don't have much left for thyroid function, this number doesn't really tell you what you need to know.

What you need to know are the Free T4 and the Free T3 levels in your blood.

Free T4 is the amount of T4 (thyroid storage hormone) that is in your blood and available for your body to store. It's stored throughout your body in your tissues where it waits until you need it to be converted.

Free T3 is the amount of T3 (active thyroid hormone) that is in your blood and available for your body to use.

T3 is made during a conversion process that occurs at the cellular level from T4.

T4 contains 4 iodine molecules. During conversion one of the iodine molecules is pulled away leaving a T3. T3 is the hormone that is used the most throughout your body.

There are two other thyroid hormones that are also made through this same conversion process. An iodine molecule is removed from a T3 to produce a T2.... and another iodine molecule can be removed from a T2 to produce a T1.

If your body is unable to convert hormone you will continue to have symptoms of low thyroid, hypothyroid. If you don't get enough replacement to begin with (the amount of Synthroid that you are taking) you won't have enough available for conversion and you will have symptoms of low thyroid.

You are taking a synthetic thyroid hormone, Levoxyl, that contains only synthetic T4 hormone. So not only do you need to take enough of it.... you need to be sure that your body is converting it efficiently enough for you to be well.

So... the tests that you need are:

TSH, Thyroid Stimulating Hormone, to see how panicked your body may or may not be about your thyroid hormone levels.

Free T4, Thyroid Storage Hormone, to see if your dosage is high enough to give you the hormone that your body needs to work with to produce the hormones that it needs to function.

Free T3, Active Thyroid Hormone, to see how well your body is able to convert hormone. This will also let you know if you have enough active hormone available to be converted to T2 (which is linked to metabolism) and T1 (which is linked to Brain Function).

You want to make sure that you doc is, at the VERY least, checking TSH, Free T4, and Free T3.

Yep... I know I just said the same thing more than once, three I think... but I did that because it's that important.

What diagnosis did they give you as the reason to remove your thyroid gland?

Synthetic thyroid, like the Levoxyl that you are taking as well as Synthroid and several others, are synthetic hormone. During the manufacturing process they have a sodium molecule added to the T4 (the make it more shelf stable). Your body must remove that sodium molecule for the T4 to be available to you body. So you need to take it on an empty stomach. That means 4 hours after eating or 1 hour before. How you take the med affects how it will, or will not work for you.

Armour thyroid is a natural thyroid product, there are also generics of it. It is basically freeze dried thyroid gland from a pig. (whole fancy process involved there, I just put it in simple terms). It's already in a natural form and ready to be used by your body. It contains not only the storage hormone, T4, but also contains T3, T2, and T1 as well as another hormone that your body can't make at all, Calcitonin, which is used by your body to pull Calcium from your blood and put it back into your bones, keeping them strong and healthy.

Some folks do well on synthetics, many do not. For those that aren't able to convert adequately they find that by taking either a synthetic T4/T3 combo or by switching to a natural thyroid that contains all the hormones that they do better.

The body still has to convert hormone, even when taking natural, but with the extra hormones that are in the natural we get a jump start.

Since you have had your thyroid removed. It's especially important that you have a source of Calcitonin. That would mean that you may find that natural would be better for you. Although, to be fair, there is now a nasal spray that is available that will give you Calcitonin.

It would be wise to have a bone scan, now, to give you a base line to use in the future so that if there should be an issue with your bones you will have something to compare to.

Most docs don't want to do bone scans.

Most docs don't want to test Free T3 and Free T4.

Most docs don't understand that 'in normal range' for your levels is not good enough .... it's where your levels are in the range for TSH, Free T3, and Free T4 AND how you feel ... that tells if your are getting a sufficient amount of replacement hormone.

I probably hit you with a lot of stuff that hasn't sunk in yet, made sense yet... it does get confusing... so ask about anything that you would like someone to run over again, or from a different angle so that it makes sense to you.

You are your best resource for both information and determination when it comes to your health, so the more you ask, the more you learn, the better job you will do.

We have a web page set up that runs through the hormones, the tests and the meds so that you can review them any time you want... swing by when you have some time. www.thyrophoenix.com/thyroid_101.htm

We also have a page that explains a bit about what you can do to tell, in between labs, how your body is doing... www.thyrophoenix.com/self_monitor.htm

It's a good, very good, idea to take notes with you to the doc. Write down your questions and leave space after them to write the doc's response. Don't worry too much about spelling, just scribble it down as best you can, we'll help you to decipher your notes afterwards and explain it better.

Take notes about anything else the doc talks about... we can help you understand that too.

It's hard, with some docs, to get them to test the Frees but it's very very important that they be tested... be firm, be prepared, if needed, to find a doc that understands PROPER thyroid care and will test you....

Find out what your diagnosis was/is.... what determined that they had to remove your gland.

Find out when he/she wants you to come back for follow up labs.

I feel that a doc that will ONLY prescribe synthetic probably doesnt' understand much about thyroid care and may not be willing to help you to feel better. This isn't specifically a bash against synthetic, although I do that a lot (my own opinion here) but that a doc that will stick with only one hormone source may not be as educated in proper thyroid care as needed to make you feel well.

Well... I'll stop here with just one request of you, for now.... can you post your last labs, with lab ranges, for us to see?

..... now you get to form more questions and have at us!!!! hehehehehe

Topper ()

On Wed, 06 Jul 2005 17:07:05 -0000 "Tell ya later" writes:

Hi I found your group last night and am so glad I did. I had my thryoid taken out a year ago last Feb. I have felt much worse after having it out than I did before. I went to the doctor because I was gaining alot of weight and didn't know why. One week later I was having my thyroid taken out. I don't understand all the things you guys are talking about with T3 and T4 and all. Noone has ever explained all this to me. I moved to a new town a few months ago and have a new docter now. He uped my med. to 150 Levoxyl from 125. I have to go back this Tuesday to have bloodwork done again. What are some questions that I need to be asking? What is the Armour medicine I keep reading about. I have gained about 70 pounds in the last year and a half. I am tired all the time and get depressed at times. My joints hurt all the time now. I was never like this before. Help!!! Thanks for any information you guys can gice me.

[Guest guest]

Hi, , Welcome to our little family....

You have labs coming up so it will be a good opportunity to get the right tests done....

Most docs seem to think that testing TSH alone is just fine and dandy... but, unfortunately for us it's not.

TSH is a pituitary hormone, not a thyroid hormone. The Pituitary releases TSH to signal the thyroid gland to produce more hormone. The higher the TSH the more hormone your body needs.

Once you are on replacement, and especially when you don't have much left for thyroid function, this number doesn't really tell you what you need to know.

What you need to know are the Free T4 and the Free T3 levels in your blood.

Free T4 is the amount of T4 (thyroid storage hormone) that is in your blood and available for your body to store. It's stored throughout your body in your tissues where it waits until you need it to be converted.

Free T3 is the amount of T3 (active thyroid hormone) that is in your blood and available for your body to use.

T3 is made during a conversion process that occurs at the cellular level from T4.

T4 contains 4 iodine molecules. During conversion one of the iodine molecules is pulled away leaving a T3. T3 is the hormone that is used the most throughout your body.

There are two other thyroid hormones that are also made through this same conversion process. An iodine molecule is removed from a T3 to produce a T2.... and another iodine molecule can be removed from a T2 to produce a T1.

If your body is unable to convert hormone you will continue to have symptoms of low thyroid, hypothyroid. If you don't get enough replacement to begin with (the amount of Synthroid that you are taking) you won't have enough available for conversion and you will have symptoms of low thyroid.

You are taking a synthetic thyroid hormone, Levoxyl, that contains only synthetic T4 hormone. So not only do you need to take enough of it.... you need to be sure that your body is converting it efficiently enough for you to be well.

So... the tests that you need are:

TSH, Thyroid Stimulating Hormone, to see how panicked your body may or may not be about your thyroid hormone levels.

Free T4, Thyroid Storage Hormone, to see if your dosage is high enough to give you the hormone that your body needs to work with to produce the hormones that it needs to function.

Free T3, Active Thyroid Hormone, to see how well your body is able to convert hormone. This will also let you know if you have enough active hormone available to be converted to T2 (which is linked to metabolism) and T1 (which is linked to Brain Function).

You want to make sure that you doc is, at the VERY least, checking TSH, Free T4, and Free T3.

Yep... I know I just said the same thing more than once, three I think... but I did that because it's that important.

What diagnosis did they give you as the reason to remove your thyroid gland?

Synthetic thyroid, like the Levoxyl that you are taking as well as Synthroid and several others, are synthetic hormone. During the manufacturing process they have a sodium molecule added to the T4 (the make it more shelf stable). Your body must remove that sodium molecule for the T4 to be available to you body. So you need to take it on an empty stomach. That means 4 hours after eating or 1 hour before. How you take the med affects how it will, or will not work for you.

Armour thyroid is a natural thyroid product, there are also generics of it. It is basically freeze dried thyroid gland from a pig. (whole fancy process involved there, I just put it in simple terms). It's already in a natural form and ready to be used by your body. It contains not only the storage hormone, T4, but also contains T3, T2, and T1 as well as another hormone that your body can't make at all, Calcitonin, which is used by your body to pull Calcium from your blood and put it back into your bones, keeping them strong and healthy.

Some folks do well on synthetics, many do not. For those that aren't able to convert adequately they find that by taking either a synthetic T4/T3 combo or by switching to a natural thyroid that contains all the hormones that they do better.

The body still has to convert hormone, even when taking natural, but with the extra hormones that are in the natural we get a jump start.

Since you have had your thyroid removed. It's especially important that you have a source of Calcitonin. That would mean that you may find that natural would be better for you. Although, to be fair, there is now a nasal spray that is available that will give you Calcitonin.

It would be wise to have a bone scan, now, to give you a base line to use in the future so that if there should be an issue with your bones you will have something to compare to.

Most docs don't want to do bone scans.

Most docs don't want to test Free T3 and Free T4.

Most docs don't understand that 'in normal range' for your levels is not good enough .... it's where your levels are in the range for TSH, Free T3, and Free T4 AND how you feel ... that tells if your are getting a sufficient amount of replacement hormone.

I probably hit you with a lot of stuff that hasn't sunk in yet, made sense yet... it does get confusing... so ask about anything that you would like someone to run over again, or from a different angle so that it makes sense to you.

You are your best resource for both information and determination when it comes to your health, so the more you ask, the more you learn, the better job you will do.

We have a web page set up that runs through the hormones, the tests and the meds so that you can review them any time you want... swing by when you have some time. www.thyrophoenix.com/thyroid_101.htm

We also have a page that explains a bit about what you can do to tell, in between labs, how your body is doing... www.thyrophoenix.com/self_monitor.htm

It's a good, very good, idea to take notes with you to the doc. Write down your questions and leave space after them to write the doc's response. Don't worry too much about spelling, just scribble it down as best you can, we'll help you to decipher your notes afterwards and explain it better.

Take notes about anything else the doc talks about... we can help you understand that too.

It's hard, with some docs, to get them to test the Frees but it's very very important that they be tested... be firm, be prepared, if needed, to find a doc that understands PROPER thyroid care and will test you....

Find out what your diagnosis was/is.... what determined that they had to remove your gland.

Find out when he/she wants you to come back for follow up labs.

I feel that a doc that will ONLY prescribe synthetic probably doesnt' understand much about thyroid care and may not be willing to help you to feel better. This isn't specifically a bash against synthetic, although I do that a lot (my own opinion here) but that a doc that will stick with only one hormone source may not be as educated in proper thyroid care as needed to make you feel well.

Well... I'll stop here with just one request of you, for now.... can you post your last labs, with lab ranges, for us to see?

..... now you get to form more questions and have at us!!!! hehehehehe

Topper ()

On Wed, 06 Jul 2005 17:07:05 -0000 "Tell ya later" writes:

Hi I found your group last night and am so glad I did. I had my thryoid taken out a year ago last Feb. I have felt much worse after having it out than I did before. I went to the doctor because I was gaining alot of weight and didn't know why. One week later I was having my thyroid taken out. I don't understand all the things you guys are talking about with T3 and T4 and all. Noone has ever explained all this to me. I moved to a new town a few months ago and have a new docter now. He uped my med. to 150 Levoxyl from 125. I have to go back this Tuesday to have bloodwork done again. What are some questions that I need to be asking? What is the Armour medicine I keep reading about. I have gained about 70 pounds in the last year and a half. I am tired all the time and get depressed at times. My joints hurt all the time now. I was never like this before. Help!!! Thanks for any information you guys can gice me.

[Guest guest]

Hi my name is Donna, I live in Michigan. I have breast cancer her-2

positive. I had surgery Dec 16 of 2003 a total mass.I had 7m nodes

taken and of those 7 3 were bad I am stage 3. In March of 2004 I

started a clinical trial for herceptin. I did 4 rounds of chemo the

started 12 weeks every week of Taxol and Herceptin, the started 40

weeks of just Herceptin every week also in there I did 7 weeks every

day of rads. I finished my treatment April 27 of 2005. So far

everything is looking good, I have my 9 month check=up the end of next

month and praying that all is still fine. I have been married for 31

years and have three children and two beautiful grangchildren. I f

anyone would mlike to IM me ot email me please feel free.

Blessings to all

Doona