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Old 03-18-2010, 01:09 AM   #1
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Very High Thyroid Antibodies

Hello,

I've had very bad thyroid problems. I had a goiter (the first endo didn't biopsy it). He loaded me up on T4 and T3 and I was a nutcase. It was diagnosed as Hashimoto's.

I went to two more endos. Neither was concerned about the "goiter". They adjusted my synthroid and took me off T3.

The "goiter" kept growing. The fourth endocrinologist I saw did a biopsy (eight fine needle samples) and called me the next day to say I had malignant carcinoma of the thyroid. Ten days later the thyroid was removed. The tumor was huge and the doc said I'd had it for eight years.

I've never felt good on synthroid (anybody surprised). AND my thyroid antibodies are off the charts.

I think that's making me feel sick. Is there anything that can be done to calm them down?

I had two treatments of radioactivve iodine and three body scans to insure no cancerous tissue remained in my body.

I had to go off thyroid hormone completely, TWICE, for the scans. It wasn't fun or pretty ....long time going off and long time building the levels up again.

Any comments or advice?

Thanks,

Jericroth

 
Old 03-18-2010, 11:15 AM   #2
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Re: Very High Thyroid Antibodies

Antibodies don't cause symptoms; the hormone deficit they create is what causes symptoms. Your problems very likely relate to Synthroid incompatibility, either the wrong dose or its lack of T3. To understand how it's helping or isn't helping, you need to have free T4 and free T3 tests run. If either of those is below 50% of their ranges, that would be the likely cause of remaining symptoms. Monitoring TSH alone is no way to dose thyroid med.

If you still want to attempt to decrease antibodies, TPO Abs can be reduced up to 40% by taking 100-200 mcgs of selenium every day. They can't be totally eliminated, just reduced. Check your multi-vitamin for content before supplementing Se, as overdose can be dangerous.
There is nothing at all you can do for Tg Abs.

 
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Old 03-19-2010, 12:19 PM   #3
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Re: Very High Thyroid Antibodies

Thanks Midwest 1.

My opinion is and I've been told by an endocrinologist that high thyroid antibody levels can make you feel sick ..... like when you are fighting an infection? A lot of the YUK symptoms are coming from that.

We have many different types of antibodies and when they are in retreat all would be well.

I just started on this board and learned there are different types of thyroid antibodies. I must look into that.

I've been researching thyroid issues for years. And I several medical conditions. Another theory I have is that one knows when something is wrong and not being addressed. It's happened too many times with me being dissatisfied with a diagnosis. And then two or three doctors later finding out I'd had a malignant tumor on my thyroid gland for eight years. And three doctors didn't biopsy the nodules on the huge lump they kept calling a goiter. One Dr. was trying to shrink it with high levels of T4 and T3. He diagnosed the Hashimoto's.

And the hormones in combination with an antidepressant made me borderline psychotic .... if there is such a term.

I left that Dr. and the endocrinologist I found, at a University Medical School told me you can't shrink a goiter. Go figure. And she didn't do a biopsy. And she left town without so much as sending me a letter.

Endocrinologist #3 played with the dose of T4 and took me off the T3. He said, "you are bouncing around the room". I agree. But it was too high. And he didn't do a biopsy.

He left town. I found an endocrinologist who's demeaner amongst his patients is close to being antagonistic. With an ego to match. But he did do the biopsy and ultrasound on my first visit and has treated me for the last eight years.

He "goes by the book" regarding T4 levels and insists on synthroid. And I think he makes assumptions that any low energy or moods are related to depression which I do suffer from. Question is, which came first.

There are medications with different ratios of T4/T3 that are synthetic. And I've researched that lower levels of T3 taken twice a day since it's short acting can work wonders for energy and mood, etc. Without causing any unwanted effects such as rapid heartbeat, hypertension, headache, etc.

I live in Sioux Falls, South Dakota and healthcare is the #1 industry. We have a 5,000 bed University of SD Medical Center with clinics all over the state. Another huge University Affiliated hospital and clinic system. And I can't find on doctor in town that will push the envelope. And we have 2,000 or more physicians in this town.

< edited >

It's nice to be amongst people who are being proactive and learning about their own medical condiions. I tell friends who are sick, not getting help, to find another doctor. It's amazing how hesitant peope are to do that.

Jericroth

Last edited by hb-mod; 03-20-2010 at 12:52 AM. Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!

 
Old 03-19-2010, 09:35 PM   #4
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Re: Very High Thyroid Antibodies

Quote:
My opinion is and I've been told by an endocrinologist that high thyroid antibody levels can make you feel sick ..... like when you are fighting an infection? A lot of the YUK symptoms are coming from that.
Yours isn't the first such report that I've read here. So I concede to your personal experience rather than what I've learned about them. Thyroid disease is such a unique personal adventure, after all. So unique, that some goiters actually have shrunk once the patient was supplied with the proper dose of thyroid hormone. Not every one, it's true, but some.

Ah yes ... endocrinologists! The biggest egos and smallest thinkers in the entire profession. I'm sorry you've run into such a sorry lot, but you know you aren't alone.

How long ago was your thyroidectomy? Theoretically, the antibodies should subside and resorb once they have no tissue left to attack.

 
Old 03-20-2010, 12:48 AM   #5
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Re: Very High Thyroid Antibodies

Thanks Midwest 1,

My cancerous thyroid was removed eight years ago. After that one must go off synthetic hormone completely so a full body scan can be completed after taking tracer iodine in order to see if any thyroid cells light up in the body. In my case and in most there was tissue remaining.

I was then given a dose of radioactive iodine, 50 micro curries I believe. Then one waits, (can't remember how long), goes on and off hormone again, has another scan to see if the radiation got evertything. In my case it didn't. So they doubled the dose of radiation, off hormone again, then another scan. This time they got it.

You probably know the protocal .... and that being without any hormone at all is hell. My endo said if you didn't have depression before all that you would after. I already had depression so it really hit me. And of course you have to taper off the hormone slowly and dose up the T4 slowly. He did give me some cytomel (T3) after the second cooking for some immediate clinical result. I'm being specific with things you probably know for other people's benefit.

The very high level of thyroid antibodies is an anomally to the endocrinologist. As you say, they should dissipate.

As long as you are interested ... his take on blood levels of hormone goes like this. He wasnts a certain level of TSH in the blood. So, clinically he keeps me in a lower than baseline (hypothyroid) state as far as the levels of T4. For some reason he wants the pituatary gland to keep calling for hormone.

And I don't know if he can measure T3 in my blood. Can one do that? I'd like to look at my records. This guy is freaky about that. And my internist wanted my file from him. And he didn't send it. He doesn't want other doctors to see it.

I know, I could find someone else. I just don't believe it's worth the effort. I'll get a complete copy of my chart but I'll have to pay for it.

Jericroth

 
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