# cant take any thyroid



## Brucergoldberg (May 23, 2011)

I would like to post a simple question without complicating things. My iron is okay, my adrenals are fine. lets just assume for a minute that all of my other body parts function good except my thyroid.

are there any other folks that take thyroid and then start buzzing off the hook four hours later, with horrible anxiety and worse ringing in the ears than without thyroid?

thank you hugs2


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## Andros (Aug 26, 2009)

Brucergoldberg said:


> I would like to post a simple question without complicating things. My iron is okay, my adrenals are fine. lets just assume for a minute that all of my other body parts function good except my thyroid.
> 
> are there any other folks that take thyroid and then start buzzing off the hook four hours later, with horrible anxiety and worse ringing in the ears than without thyroid?
> 
> thank you hugs2


What do you mean by iron? Have you had a ferritin test?

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)

3 things come to mind that can cause one to buzz off the hook if they take thyroxine replacement; cancer or low ferritin or both.

4th. possibility is incorrect dose for the patient causing overdose.

I am sure others will have other comments.


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## lainey (Aug 26, 2010)

Which thyroid medication are you taking?

T4 medications (Synthroid, Levoxyl) must build up in the body before they have any affect. That usually takes weeks.

The effects of T3 medications (Armour, Thyrolar, Cytomel) may be felt in several hours, and some people are very sensitive to them--including "buzzing" off. People who have these reactions usually do better on T4 only medications.

What does your lab work say?

Certain people with borderline lab work or with several sets of antibodies may also have difficulty tolerating thyroid medications. Generally, in this case medication may not be appropriate because their thyroid has not failed and is still producing hormone on it's own, or competing antibodies cause a patient's status to swing between hypo and hyper.


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## Brucergoldberg (May 23, 2011)

I do not have cancer, my iron is fine.

When i take synthroid of any sort of dosage i get electrostatic hypotension which is extreme dizzyness, my heart rate goes through the roof, I cannot think, function or survive when this is going on. If you look through sweetgirl44 post in another thread, she describes the same thing when she decided to put 1/4 pill under her tongue.

My iron is fine, my ferritin is fine

my tsh is 13.78
t4 always 1.0
the t3 free is 2.8 ranges 2.3 to 3.0
the t3 total is 107 76-181

I tried naturethroid as well, it completely exhausted me and made my thyroid hurt. I like this theory:

*Generally, in this case medication may not be appropriate because their thyroid has not failed and is still producing hormone on it's own, or competing antibodies cause a patient's status to swing between hypo and hyper.

*

So i am considering removal. unless you have any other suggestions for me?


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## lainey (Aug 26, 2010)

What are the ranges on the T4? Yours is not horribly low, if the ranges were in the vicinity that is common for many labs--0.7-1.7 or 0.8-1.8 (or something similar) are often ranges for this.

Your free T3, surprisingly, is in range even with the TSH that high.

Anecdotally, I have encountered people in the forums who do have a TSH such as yours, who discovered it as a "surprise" on a blood test for something else. Often these people have few symptoms, and are unsuccessful at lowering their TSH with medication--the normal curve for TSH does extend quite a ways into the upper ranges, so it is not a mathematical impossibility to have a "high" TSH yet not need medication. There are a rare few.

Have the thyroid antibodies been run? Do you have nodules?

Competing antibodies, or blood work that moves quickly from hyper to hypo would be good cause for removal. Multiple large nodules, or suspicious nodules also would give a good case for removal.

However, if you can't take thyroid meds now because of some other physiological reason, what if you can't take them after a thyroidectomy?

Has anyone looked at your pituitary gland to see if it is functioning properly?


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## Brucergoldberg (May 23, 2011)

I do have the TPO antibodies. Mine are in the 600 range. My t3 is low but in range. the tsh is out of hand. Usually my ears ring all the time, i make it until about 3 pm and then i crash hard. My pituatary in my brain is OK. I have been around the block a few times. Here are my tests (hope you are sitting down for this)

MRI with without contrast brain x 2 
MRI with without contrast spinal cord 
MRI kidneys, liver
Kidney sonogram
spinal tap/ Blood patch 
2 sonograms thyroid no nodules 
stomache scan 
stomache MRI 
Colonoscopy 
MRI pituary gland 
heart work up, stress test, Sonogram of heart
4 neurology work ups - head of neuro mayo clinic
full parkinsons work up/ ms work up - head of department ut southwestern medical 
full lymes work up (twice) 
sonogram of arteries in neck 
vestibular work up 
cancer work up including bone marrow biopsy
Full body cancer scan (peda scan) 
MRI ears drums 
Opthomology work up 
ENT work up twice/ one by head of department ut southwestern medical 
Pituary consultation head of pituary clinic, Harvard university Phone consult MRI reading
6 different endos in Dallas/ 1 in mayo flordia 
3 neurologists 
Infectious disease consultation 
Celiac test 
Full allergy work up for food 
Rhizotomoy cold water kill back nerves t6-t10
Rhizotomy cold water kill neck nerves 6-9
Hidascan x 2
and the most recent one: MRI of brain with / without to look for hashimotos encepholopothy
thyroid uptake scan


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## lainey (Aug 26, 2010)

That is quite a list. Either you have good insurance or deep pockets.

What about TSI?

By competing antibodies, you would be thyrotoxic if you had both the TPO and TSI.

Results of the uptake were normal?

Have you tried a T3 only medication in very low doses, such as cytomel?


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## Brucergoldberg (May 23, 2011)

The first group of tests were dine before any of the doctors realized it was the thyroid. The balance of them was done to rule out other stuff.

My tsi was negative.

Uptake showed 1% function and blocked results.

My thyroid hurts, my ears ring, and I'm exhausted all the time. When I take thyroid I feel worse.

I was considering removal. Now I'm considering rai. Maybe this will help with balancing?

We are blessed with good insurance. I lost my job when this started 2 years ago due to poor performance. I have 2 children and cannot provide for them.


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## lainey (Aug 26, 2010)

When you say negative, do you mean "none" or the result was negative because you were below the range?

Hashitoxicosis occurs when the patient has both the stimulating and blocking antibodies. These work in concert, often alternately stimulating and blocking the thyroid, resulting in variable results. It does not sound at the moment like that is what is going on, unless you do in fact have some TSI.

Uptake is consistent with hypothyroid, yes.

Removal/RAI are essentially similar in that it kills/remove sthe thyroid tissue. Physically removing the thyroid generally causes the TPOab to drop over time, but does not always affect TSI, if you have it.

Have you tried T3 alone, in very small (say 2.5mcg) doses?


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## Brucergoldberg (May 23, 2011)

TSI was negative. they figured out why my thyroid uptake was blocked. They are saying the contrast die did not make it in to the gland right stating the gland was blocked or full of iodine. Nice of them to tell me to stop taking iodine a week before my test. kind of important?

I took t3, sent me up too fast too quick, irritating and ears ringing.


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## lainey (Aug 26, 2010)

I am assuming they checked the other hormones--cortisol, testosterone, estrogen?

The low iodine diet is supposed to be for scans to detect cancer.

Actually, in an uptake scan for thyroid function, supposedly you are to eat a normal diet, just discontinue any supplements such as vitamins that contain extra iodine.

If you have to eat in a special way before the test, how does that measure what's going on a daily basis if you don't eat that way all of the time?

Unless of course you have a very high iodine diet. In that case, it can be a source of the problem, as too much iodine generally is counter productive to the thyroid.


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