Re: Frustrated and need advice

[Guest guest]

Hi Debby,

Of course I remember you, and I recall that you felt hyper symptoms with a

TSH lower than about 1.5-2.0.

Several years after RAI, hypothyroidism often worsens as people begin

producing more blocking TSH receptor antibodies. So besides having

RAI-induced hypothryoidism, total thyroid failure or primary myxedema occurs.

Is your doctor also running FT4 and FT3 levels? This would really help as it

would show exactly how much thyroid hormone is in your blood. TSH can be very

misleading because it's a pituitary hormone. You may be secreting TSH because

of other reasons that aren't thyroid related. You also could have antibodies

to TSH. These are rare, but people do develop these. Since they react in the

test, your TSH level would look falsely elevated. I'm not sure TSH is a

reliable indicator for you. Besides being affected by antibodies, it has a 6

week lag, meaning that it takes that long to catch up and reflect what your

thyroid hormone levels are. If your TSH is an accurate indicator, your FT4

and FT3 would be very low.

If you have recent FT4 and FT3 levels please post them here. If not, ask your

doctor to run them. If you had labs in less than a week, the lab can run the

tests on the blood sample it has. Take care, Elaine

[Guest guest]

Hi Debby,

Of course I remember you, and I recall that you felt hyper symptoms with a

TSH lower than about 1.5-2.0.

Several years after RAI, hypothyroidism often worsens as people begin

producing more blocking TSH receptor antibodies. So besides having

RAI-induced hypothryoidism, total thyroid failure or primary myxedema occurs.

Is your doctor also running FT4 and FT3 levels? This would really help as it

would show exactly how much thyroid hormone is in your blood. TSH can be very

misleading because it's a pituitary hormone. You may be secreting TSH because

of other reasons that aren't thyroid related. You also could have antibodies

to TSH. These are rare, but people do develop these. Since they react in the

test, your TSH level would look falsely elevated. I'm not sure TSH is a

reliable indicator for you. Besides being affected by antibodies, it has a 6

week lag, meaning that it takes that long to catch up and reflect what your

thyroid hormone levels are. If your TSH is an accurate indicator, your FT4

and FT3 would be very low.

If you have recent FT4 and FT3 levels please post them here. If not, ask your

doctor to run them. If you had labs in less than a week, the lab can run the

tests on the blood sample it has. Take care, Elaine

[Guest guest]

Hi Debby. I'm sure someone with more experience will chime in soon but it

is the weekend so I'll ask a few questions to get the ball rolling:

- Does your dr. test FreeT3 (and FreeT4 for that matter) and is he open

to T3 supplementation?

- Is surgery at all an option?

I hope you're able to achieve long-lasting stability soon. Your

experiences are bound to help a number of people here.

Take care, Fay

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[Guest guest]

Hi Debby. I'm sure someone with more experience will chime in soon but it

is the weekend so I'll ask a few questions to get the ball rolling:

- Does your dr. test FreeT3 (and FreeT4 for that matter) and is he open

to T3 supplementation?

- Is surgery at all an option?

I hope you're able to achieve long-lasting stability soon. Your

experiences are bound to help a number of people here.

Take care, Fay

________________________________________________________________

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[Guest guest]

Deb, I have no clue what is really going on, but I did find that soy in any

form makes me very hypo, although I don't know how it may have affected my

TSH in actual value numbers. Soy protein is added to many items, even soups

if restaurants. What kind of foods are you eating. I too had RAI, so my

diet might be different than those on antithyroid drugs.

Jen M.

Frustrated and need advice

> Hi everyone,

>

> I've been a member for a few years but was having trouble accessing

> the group for a long time...elaine you will probably remember me.

>

> Anyway, here is a short version of my story. I was diagnosed in

> February of 99, had RAI in April. By July of 99 I had a TSH of

> 416.99..it took well over a year to get me into normal range, but

> that only lasted a few weeks and then went into hyper and stayed

> there for quite some time.

>

> Not knowing if this is related but I ended up developing two heart

> valve problems and we then found that even within the " normal " limits

> I was experiencing hyper symptoms and they decided to try to get me a

> little into the hypo range to control my heart rate. I couldn't take

> the beta blockers because I run unusually low with my blood pressure

> to begin with and I was fainting all the time when I took them.

> Well, we got me to a level of 8 for about two months and I felt

> great...no symptoms either way. Well, since August of 02 my TSH has

> been all over the place again, but staying hypo no matter what we

> do. It was 56 in August and it took 6 months to get it down to

> 6..which was fine with me. However, my endo had a change of heart

> about his " theories " and decided that he didn't want me over

> the " normal " range even though I felt better, because he was worried

> about the heart problems you can develop being in hypo and because I

> already have the valve problems. So, we INCREASED my meds from

> 138mcg of synthyroid to 188...Here I am 8 weeks later with a TSH of

> 105. It went up from 6 to 105?? Needless to say I am not functioning

> too well, nor am I feeling that great. This has been happening for

> years. I have never been on a consistent dose for more than 2 months

> in 3-1/2 years. With the extreme changes in my level and what that

> has done to my body, I had to stop working and am now on disability.

> There has to be someone out there who knows how to help me. My endo

> said to me this week " I don't know what the hell to do with you " Then

> of course he tried to blame me by saying that I couldn't possibly be

> taking my meds properly and that since I'm extremely hypo my mind

> isn't functioning the right way and maybe I'm forgetting to take

> it...ugh! We now increased the meds to 300 mcg. He also told me to

> have someone " watch me " in case I start slurring my words or if I'm

> not thinking clearly and to watch my heart rate. He talked to me

> about going into a coma or developing congestive heart failure...so

> that added more stress to me and panic.

>

> So, does anyone have any idea what is keeping me in hypo range and

> why with an increase my level went up? I take my meds at the same

> time every day, on an empty stomach and I don't take anything else

> into my body except for food and water. Also, other than when it

> went up to 56, it has pretty much stayed on the lower end of hypo, so

> this was a huge " jump " (it shouldn't have gone up at all with the

> increase in meds) Is there something medically that could be going on

> that would take it up? This is not normal! I need advice.

>

> Well, that's it for now. I said I would give you the short version

> of my story, and believe me, I did...lol Thanks in advance for any

> help someone can give me

>

> Debby

>

>

>

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[Guest guest]

Hi Elaine,

Yes, you were correct in remembering that I felt hyper when I went

below 2.0...sometimes even below 4. I called on Monday to see if

they ran anything other than TSH...He did T3uptake which was 23.7 T4

9.0 T7 2.1 When I asked if he could run FT4 and T3 he said it

wasn't necessary. Now what? He said that he didn't know what to do

with me and if I found out to let him know (unbelievable)I'm trying

to tell him what to do and he's not listening. I have an appt with

my internist next week I think I will ask him to run everything

again. If the TSH is accurate...what do I need him to do then? They

have to find out what's going on...why I'm staying hypo with an

increase in meds. Will you let me know what I need to approach him

with? Thanks, Deb

> Hi Debby,

> Of course I remember you, and I recall that you felt hyper symptoms

with a

> TSH lower than about 1.5-2.0.

> Several years after RAI, hypothyroidism often worsens as people

begin

> producing more blocking TSH receptor antibodies. So besides having

> RAI-induced hypothryoidism, total thyroid failure or primary

myxedema occurs.

>

> Is your doctor also running FT4 and FT3 levels? This would really

help as it

> would show exactly how much thyroid hormone is in your blood. TSH

can be very

> misleading because it's a pituitary hormone. You may be secreting

TSH because

> of other reasons that aren't thyroid related. You also could have

antibodies

> to TSH. These are rare, but people do develop these. Since they

react in the

> test, your TSH level would look falsely elevated. I'm not sure TSH

is a

> reliable indicator for you. Besides being affected by antibodies,

it has a 6

> week lag, meaning that it takes that long to catch up and reflect

what your

> thyroid hormone levels are. If your TSH is an accurate indicator,

your FT4

> and FT3 would be very low.

>

> If you have recent FT4 and FT3 levels please post them here. If

not, ask your

> doctor to run them. If you had labs in less than a week, the lab

can run the

> tests on the blood sample it has. Take care, Elaine

>

>

>

[Guest guest]

Hi Deb,

T7 is an obsolete test and so is the T3 uptake, which measures binding proteins

not thyroid hormone. Your total T4 of 9 looks fine but total T4 may be falsely

high or low. You really do need a free T4 and free T3. You most likely have

antibodies to TSH or are secreting TSH for other reasons and can no longer rely

on this test to monitor thyroid function. The only way to tell what your thyroid

function is, and it may be fine right now, is with an FT4 and FT3 test. Please

tell him, that although this is rare, we see several patients a year who have

false positive TSH levels, either due to antibodies or tumors. TSH is not

exclusively related to thryoid function.

Your doctor should also be looking for a reason for your falsely elevated TSH.

Besides the TSH receptor antibodies, TSH can be secreted as a result of certain

tumors. If he doesn't follow up on this, you really do need to find another

doctor. Take care, Elaine

[Guest guest]

Hi Deb. I wish you success in finding competent medical care and strength

to insist on the testing you need.

I hope you don't mind but I'd like to clarify something for the benefit

of new hypers: You'll often hear us say that TSH is basically irrelevant.

It basically is in the treatment of hyperT. It can stay suppressed well

into treatment with ATDs. That's why the FreeT4 and symptoms are the best

indicators for dosage changes.

With hypOthyroidism, though, the TSH does often move in concert with the

thyroid hormones. Deb is hypO and unfortunately it seems that she's been

mismanaged almost to the point of malpractice. While TSH is more helpful

with hypoT (and IIRC Vliet says that TSH is the most

significant test in managing hypoT which is somewhat disappointing)

a. As Elaine said, there can be false readings

b. Many hypo people would benefit from thyroid hormone replacement

therapy that doesn't just affect the T4 hormone; this seems especially

true with people who've had RAI. (I base this on the experiences of

people on this list.)

Take care, Fay

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