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- I found some old lab results. There were not any TS3 or TS4

etc. The only lab result was TSH. On 1-14-06 TSH was 5.572H - Limits

are 0.350-5.500, so it was high. On 3-23-06 TSH was 1.125.

I feel like an idiot. Do you have any suggestions on where to

learn more on labs and what everyone with thyroid condition needs to

know. For example, do I have Graves disease Hashimoto? The only thing

one of my doctors told me early in treatment was that my eyes would

bulge after radio iodine, which hasn't happened. Is it my

imagination, or do doctors discourage their patients from learning

about their illness?

I know that it was suggested to me that " I spend too much time on

the internet looking up things about my illness. " As if to say,

whatever I read - I get. It just adds to my frustration and many

times I find myself saying " just leave it up to the doctors, that's

why they went to med school, " or telling myself " stop playing doctor

and just do what they tell you. "

However, after what has transpired, it seems obvious to me that

it's time to take the bull by the horns and get proactive in my

treatment program. Any suggestions from anyone would be welcome. Has

anyone else felt intimidated by physicians? Do you feel we shouldn't

get involved and just let the doctor's do their job? I'll be looking

forward to hearing from you. Thank you. Jeff

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You would need antibody testing to determine if you have Grave's

disease , but considering yo uhave been treated with RAI , the

question is really obsolete unless she develop eye sympoms.

Grave's is an autoimmune disorder, the anitbody responsible for

Grave's is called TSI or thyroid stimulating antibody.. it attaches

to the TSH receptor cells and stimulates the thyroid to produce

thyroid hormone..these hormones are known as T4 and T3. The thyroid

produces mainly T4 which is considered the storage hormone, T3 is

considered the active hormone and although the thyroid produces a

little, most T3 is produced in the body( mainly liver) from T4..

Sounds fancy..but very basic..T4 is (T)hyroid hormone with (4)iodine

molecules attached.. strip off a thyroid molecule and you get T3..

Now you had RAI..because the thyroid uses iodine to produce thyroid

hormone, they attach radioactive material to iodine with the

knowledge that it will be uptaken my the thyroid.

The radioactive material then kills off thyroid tissue..

This stops the hyperthyroidism..and casues hypothyroidism..

So to answer your question, you are hypothyroidism due to Grave's

treatment..next to Hashimoto's this group is the largest group of

hypothyroidism..

Now the medication you are taking...not to get into fancy details

here.. the hospital dropped the ball as thyroid status should never

be tested in someone with acute illness.. only FT4 and then treatment

if warranted..if not then retest in 4 weeks and see if status

changes..( the body has a fancy way of preserving thyroid hormones

for only needed functions etc during acute illness, hospitalization

etc) ..

Synthroid is a T4 medication..meaning at a minimum your doc should be

testing T4..now there is a few types of T4 tests but considering

different hormones etc effect T4 testing you want to make sure the

doc orders the free version..FT4..

What you need to do now is build your T4 levels back up in your body..

Increase T4, labs in 6 weeks, based on labs and symptoms

increase..labs in 6 weeks, continue until both labs and symptoms are

good and then lab again in 6 weeks to make sure you are holding..

Your T4 should be some where between mid to top end of the range..

Hope this makes sense to you, and helps you understand what happened

and what is happening to you..

Kats3boys

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Jeff,

You have every right to ask questions and to understand what is

happening with your body. By the way, the TSH from 1-14-06 was

slightly elevated which would make you slightly hypothyroid. The

next one was normal. Also, doctors do make mistakes in their

diagnosis.

There's no reason to listen to a condescending comment such as " you

are spending too much time on the internet " . Why shouldn't you

understand what is happening? Get angry and become proactive about

your health. The doctors aren't paying for your living expenses -

you are, and you can't do that if you aren't healthy.

Karin

The_Thyroid_Support_Group , " Jeff Wade "

wrote:

>

> - I found some old lab results. There were not any TS3 or TS4

> etc. The only lab result was TSH. On 1-14-06 TSH was 5.572H -

Limits

> are 0.350-5.500, so it was high. On 3-23-06 TSH was 1.125.

> I feel like an idiot. Do you have any suggestions on where to

> learn more on labs and what everyone with thyroid condition needs

to

> know. For example, do I have Graves disease Hashimoto? The only

thing

> one of my doctors told me early in treatment was that my eyes

would

> bulge after radio iodine, which hasn't happened. Is it my

> imagination, or do doctors discourage their patients from learning

> about their illness?

> I know that it was suggested to me that " I spend too much time

on

> the internet looking up things about my illness. " As if to say,

> whatever I read - I get. It just adds to my frustration and many

> times I find myself saying " just leave it up to the doctors,

that's

> why they went to med school, " or telling myself " stop playing

doctor

> and just do what they tell you. "

> However, after what has transpired, it seems obvious to me that

> it's time to take the bull by the horns and get proactive in my

> treatment program. Any suggestions from anyone would be welcome.

Has

> anyone else felt intimidated by physicians? Do you feel we

shouldn't

> get involved and just let the doctor's do their job? I'll be

looking

> forward to hearing from you. Thank you. Jeff

>

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>

> You would need antibody testing to determine if you have Grave's

> disease , but considering yo uhave been treated with RAI , the

> question is really obsolete unless she develop eye sympoms.

>

> Grave's is an autoimmune disorder, the anitbody responsible for

> Grave's is called TSI or thyroid stimulating antibody.. it attaches

> to the TSH receptor cells and stimulates the thyroid to produce

> thyroid hormone..these hormones are known as T4 and T3. The thyroid

> produces mainly T4 which is considered the storage hormone, T3 is

> considered the active hormone and although the thyroid produces a

> little, most T3 is produced in the body( mainly liver) from T4..

>

> Sounds fancy..but very basic..T4 is (T)hyroid hormone with (4)

iodine

> molecules attached.. strip off a thyroid molecule and you get T3..

>

> Now you had RAI..because the thyroid uses iodine to produce thyroid

> hormone, they attach radioactive material to iodine with the

> knowledge that it will be uptaken my the thyroid.

> The radioactive material then kills off thyroid tissue..

> This stops the hyperthyroidism..and casues hypothyroidism..

>

> So to answer your question, you are hypothyroidism due to Grave's

> treatment..next to Hashimoto's this group is the largest group of

> hypothyroidism..

>

> Now the medication you are taking...not to get into fancy details

> here.. the hospital dropped the ball as thyroid status should never

> be tested in someone with acute illness.. only FT4 and then

treatment

> if warranted..if not then retest in 4 weeks and see if status

> changes..( the body has a fancy way of preserving thyroid hormones

> for only needed functions etc during acute illness, hospitalization

> etc) ..

>

> Synthroid is a T4 medication..meaning at a minimum your doc should

be

> testing T4..now there is a few types of T4 tests but considering

> different hormones etc effect T4 testing you want to make sure the

> doc orders the free version..FT4..

>

> What you need to do now is build your T4 levels back up in your

body..

> Increase T4, labs in 6 weeks, based on labs and symptoms

> increase..labs in 6 weeks, continue until both labs and symptoms

are

> good and then lab again in 6 weeks to make sure you are holding..

> Your T4 should be some where between mid to top end of the range..

>

> Hope this makes sense to you, and helps you understand what

happened

> and what is happening to you..

>

> Kats3boys

>I may not have explained myself . It was about 8 weeks after being

diagnosed with kidney infection that the doctor from E.R. tested my

thyroid. I guess my urine showed neg. for infection. One thing that

sticks out in my mind is that when the doctor examined me she pressed

on my shins and it really hurt. Is that the muscle weakness or bone

density? Maybe you could help me with one other problem that has

become very annoying lately. It feels like scitica and the pain goes

from butt all the way to foot. Some days it's extermely difficult to

walk. Do you think there's any relation to thyroid? Thankls for your

help. Jeff

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Hi Jeff,

So sorry to hear you’ve been having such a bad time, I know what it’s like…

Yes, dry mouth, swollen tongue, and the sciatica-like pain are all hypo

related. Sorry I haven’t any links to give you to confirm that statement,

it’s just snippets of information one picks up as one reads here and there,

and goes from forum to forum hearing everyone saying the same thing. And I

too suffer with those things. Tongue swollen to the extent that I tend to

bite it in my sleep and wake myself up ! lol

One of the things you have to realise, in your long struggle towards good

health, is that the majority of doctors know very little about the thyroid.

This is an international problem. If you talk to people form all over

Europe, and Australia, as I do, you will realise that we thyroid sufferers

are all in the same boat. Most of us have been told from time to time that

it is all in our heads, there’s nothing wrong with us, we should see a

psychiatrist – and here, have these nice antidepressants, and go away ! I

have been told to stop making a fuss about nothing, to stop being so

negative, that hypo is really not a problem, you just take this little white

pill every day and you’ll be fine ! – and here, have these nice

antidepressants and go away ! None of this is true, your symptoms are all

real, and so is your suffering. The thyroid hormone is essential for the

correct functioning of every single cell in your body. So if you have too

little of it – or too much – it’s hardly surprising if you have problems in

every part of your body. Anything, from in growing toenails to breaking

teeth to irritable leg to snoring, can be – and probably is – thyroid

related.

Hang on in there, read as much as you can, talk to as many people as

possible and you will learn to understand your body and how it works. You

can be well again on the right dose of hormone, and I’m sure you will. Stick

to your guns with your doctors, and tell them what YOU want. Stand up for

what you know is right. They are not gods and they don’t know everything.

And besides, it’s your body, and YOU are paying THEM !

Good luck and keep us informed,

Lili

> >I may not have explained myself . It was about 8 weeks after being

>diagnosed with kidney infection that the doctor from E.R. tested my

>thyroid. I guess my urine showed neg. for infection. One thing that

>sticks out in my mind is that when the doctor examined me she pressed

>on my shins and it really hurt. Is that the muscle weakness or bone

>density? Maybe you could help me with one other problem that has

>become very annoying lately. It feels like scitica and the pain goes

>from butt all the way to foot. Some days it's extermely difficult to

>walk. Do you think there's any relation to thyroid? Thankls for your

>help. Jeff

>

>

_________________________________________________________________

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http://www.windowslive.fr/livecom/

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Jeff,

I've got some basic info up on our website that will get you more

familiar with the hormones, labs and meds so that it's easier to

understand what you're looking at and what folks are talking about..

you're more than welcome to swing by and do some reading when you have

time.

www.thyrophoenix.com

As far as what is causing your thyroid to be wonky, Grave's Hashi's or

something else.. there are tests that can be done.... thyroid

antibodies... Your docs should have already checked these... sigh..

Eyes bulging after RAI? Not exactly correct there.... The eyes bulging,

in relation to thyroid, tends to be an antibody thing linked to Grave's

disease. When they nuke the thyroid gland (RAI) the antibodies decided to

go attack something else.. they seem to like eyes. Not everyone with

Grave's gets TED, but there is a risk.

What happens is the antibodies attack tissues behind the eye causing

swelling, the swelling pushes the eyes, causing them to bulge.....

My docs had me so scared about it that I spent five years starting at my

eyes in the mirror every morning when I got up but they never bulged.

If you know who the actor Marty Feldman is, his prominent eyes were from

TED, he had Grave's.

Too much time on the internet? Well? I'd say that's a doc that has an ego

problem... he doesn't want you to be learning enough to show how dumb he

is... IMHO, of course.....

I didnt' know anything when this all happened to me...thanks to my

lovely, caring and knowledgeable docs I ended up needing crutches to

walk, lost my home, my car, and can no longer do the work that I used to

do (I was a truck driver and weight lifter). Since learning more about

thyroid (I've been running this group for over four years now and also

have several others and the website, I 'talk' to hundreds of folks

annually about this fun stuff we deal with), proper maintenance and care,

I'm not on crutches anymore.... I'm doing TONS better....

I had a set back this last year, I'm a self treater (no insurance, no

money to see a doc) and had difficulty getting meds and ended up not only

dropping my dose, but running out... so I'm doing my 'comeback' now....

Topper ()

www.thyrophoenix.com/donations.htm

On Sun, 25 Feb 2007 01:36:07 -0000 " Jeff Wade " bennydabum2003@...>

writes:

> - I found some old lab results. There were not any TS3 or TS4

> etc. The only lab result was TSH. On 1-14-06 TSH was 5.572H - Limits

>

> are 0.350-5.500, so it was high. On 3-23-06 TSH was 1.125.

> I feel like an idiot. Do you have any suggestions on where to

> learn more on labs and what everyone with thyroid condition needs to

> know. For example, do I have Graves disease Hashimoto? The only

> thing

> one of my doctors told me early in treatment was that my eyes would

> bulge after radio iodine, which hasn't happened. Is it my

> imagination, or do doctors discourage their patients from learning

> about their illness?

> I know that it was suggested to me that " I spend too much time on

> the internet looking up things about my illness. " As if to say,

> whatever I read - I get. It just adds to my frustration and many

> times I find myself saying " just leave it up to the doctors, that's

> why they went to med school, " or telling myself " stop playing doctor

> and just do what they tell you. "

> However, after what has transpired, it seems obvious to me that

> it's time to take the bull by the horns and get proactive in my

> treatment program. Any suggestions from anyone would be welcome. Has

> anyone else felt intimidated by physicians? Do you feel we shouldn't

> get involved and just let the doctor's do their job? I'll be looking

> forward to hearing from you. Thank you. Jeff

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pressed

> on my shins and it really hurt. Is that the muscle weakness or bone

> density? Maybe you could help me with one other problem that has

> become very annoying lately. It feels like scitica and the pain

goes

> from butt all the way to foot. Some days it's extermely difficult

to

> walk. Do you think there's any relation to thyroid? Thankls for

your

> help. Jeff

It sounds like muscle weakness, it could have a few causes, I get the

scitica in my hip but it is from a car accident in which I have very

little bursa in that hip.. most of the time I do not notice it as I

have spent lots of effort in building up the muscles around it to

compensate.. so I know that pain..but mine is not thyroid related..

Weak muscles...for me it is low protien..a few ways to tell if it is

weak muscles is to try a few basic tasks that involve the larger

muscles masses..

Walk around your living room for a minute..now walk up stairs, back

down and up the stairs again.. if your legs are fine on flat surface

but just do not want to do stairs..not so much pain but heavy feeling

on the stairs then that is the large muscles in the upper thigh..

Lift your arms above your head and hold them there..do they hurt or

are they just heavy..hard to lift up..this is the large muscles

across the shoulders..

For me , these things let me know I have slipped on the protien and

need more protien in my diet..the large muscle weakness is usually a

sign of hyper..as the body uses things more quickly , protien being

on of them and will take protien starting at the large muscles..

Now I have never been hypo..for me I can only tell the hyper

symptoms, having to get up and walk around, hard to sit, needing to

stretch the muscles, sort of an electric charge going through them..

have not found much pain, just some muscles do not work..similair to

having wieghts attached to both arms and legs... I was lucky though

and found the protien connection and try to add protien to every

meal..it helps big time.

Now as far as hypo goes, pain is associated with hypo..it is one of

the symptoms. The body slows down everything..things like removing

the Lactaid acid( ??can not remember the exact name??) that the

muscles produce during muscle movement..this casues an inflammation

around the muscles and inflammation can cause pain, and causes the

muscles to be weak.. Fibro is considered by most to be a result of

long term under treated hypothyroidism.

This said, long term hyperthyroidism can cause a lower bone density,

but this would show in easier breaks etc. not sure how much if any

pain a lower bone density would cause with out an actual break etc.

Kats3boys

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>

> pressed

> > on my shins and it really hurt. Is that the muscle weakness or

bone

> > density? Maybe you could help me with one other problem that has

> > become very annoying lately. It feels like scitica and the pain

> goes

> > from butt all the way to foot. Some days it's extermely difficult

> to

> > walk. Do you think there's any relation to thyroid? Thankls for

> your

> > help. Jeff

>

> It sounds like muscle weakness, it could have a few causes, I get

the

> scitica in my hip but it is from a car accident in which I have

very

> little bursa in that hip.. most of the time I do not notice it as I

> have spent lots of effort in building up the muscles around it to

> compensate.. so I know that pain..but mine is not thyroid related..

>

> Weak muscles...for me it is low protien..a few ways to tell if it

is

> weak muscles is to try a few basic tasks that involve the larger

> muscles masses..

>

> Walk around your living room for a minute..now walk up stairs, back

> down and up the stairs again.. if your legs are fine on flat

surface

> but just do not want to do stairs..not so much pain but heavy

feeling

> on the stairs then that is the large muscles in the upper thigh..

>

> Lift your arms above your head and hold them there..do they hurt or

> are they just heavy..hard to lift up..this is the large muscles

> across the shoulders..

>

> For me , these things let me know I have slipped on the protien and

> need more protien in my diet..the large muscle weakness is usually

a

> sign of hyper..as the body uses things more quickly , protien being

> on of them and will take protien starting at the large muscles..

>

> Now I have never been hypo..for me I can only tell the hyper

> symptoms, having to get up and walk around, hard to sit, needing to

> stretch the muscles, sort of an electric charge going through

them..

> have not found much pain, just some muscles do not work..similair

to

> having wieghts attached to both arms and legs... I was lucky though

> and found the protien connection and try to add protien to every

> meal..it helps big time.

>

> Now as far as hypo goes, pain is associated with hypo..it is one of

> the symptoms. The body slows down everything..things like removing

> the Lactaid acid( ??can not remember the exact name??) that the

> muscles produce during muscle movement..this casues an inflammation

> around the muscles and inflammation can cause pain, and causes the

> muscles to be weak.. Fibro is considered by most to be a result of

> long term under treated hypothyroidism.

>

> This said, long term hyperthyroidism can cause a lower bone

density,

> but this would show in easier breaks etc. not sure how much if any

> pain a lower bone density would cause with out an actual break etc.

>

> Kats3boys

>

Youy sat that you're hyoeractive? Has your doctor told you that

you'll need radio iodine or are the meds keeping it under control?

Things are starting to come together a bit for me. Thanks for your

help. Jeff

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You say that you're hyperactive? Has your doctor told you that

> you'll need radio iodine or are the meds keeping it under control?

> Things are starting to come together a bit for me. Thanks for your

> help. Jeff

I am subclinical, I basically bounce at the top end of range and back

just below it so I am not on any meds.. I have been doing this bounce

for two years now..

The docs will not do meds as the first med they tried I reacted to

huge time, I can not do RAI becasue of allergies either. I do have

the option of a partial thyroidectomy but my doc is worried I would

be allergic to the meds ..I am doing actually really good..found a fe

tihngs that work well for me..although I have noticed the allergies

tend to be a big trigger or the thyroid tends to be a big allergy

trigger or??

My mom had RAI at the same time the docs noticed something about my

thyroid..unfortunately for me they have not decided what that

something is yet.

Kats3boys

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