One month ago my TSH was suppressed (below 0.1) and T4 was at 17 (ref. 10-28), I was at 100 mcg of T4. I increased to 150 mcg this month and my T4 increased to 27.6 (ref. 10-28). However, my TSH is also increased to 2.4!! I was not comfortable having my T4 at this high level, so I dropped back to 100 mcg and I feel fine now.
My TSH results were almost always inconsistent with T4 levels. For the most part of last year, it was suppressed regardless of my T4 was mid-range or below. My doctor thinks I have pituitary dysfunction. MRI shows I have normal pituitary structure.
By the way he refuses to test T3 anymore! but from last year tests, it tends to follow T4 trends.
T4 helped my improve but I still face fluctuations in my hypothyroid symptoms. My doctor don't know how to control these symptoms! Any advice?
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Ali1101
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Increasing your levo dose by 50mcg in one jump was too big a jump in my opinion. It should only be increased by 25mcg at a time.
Have you ever had your thyroid antibodies tested and got a positive result? Fluctuating thyroid function test results is a classic sign that you have Hashimoto's Thyroiditis (aka autoimmune hypothyroidism).
If you have never had positive antibodies, it isn't conclusive that you don't have Hashi's. It can sometimes be difficult to catch a positive result, but 90% of people with hypothyroidism in the UK and Europe have the Hashi's type.
However, my doctor says he is not sure I have Hashi's .. he says antibodies should be much higher than this. Plus, my TSH almost always suppressed making him thinks I have pituitary dysfunction!
You have Hashi's. It isn't necessary to have antibody counts in the 1000s to have Hashimoto's Thyroiditis. A healthy person with no autoimmune issues would have antibody counts which were zero or very, very close to it, and your thyroglobulin antibodies aren't close to zero, they are over the reference range.
If your antibody activity fluctuates often then your TSH may go up and down a lot. If antibody activity slows down then your TSH will start to rise, and if antibodies then start up a new assault then your TSH will start to drop again.
The way Hashi's works is (as far as I understand it) :
Antibodies attack the thyroid. In the process they kill the cells of the thyroid. Once this cell death occurs any thyroid hormone in the dead cells is released. This makes your T4 and T3 increase and the higher levels will show in a blood test. Your TSH will drop because of the higher levels of T4 and T3.
If the antibodies then go a bit quieter and less active, then fewer cells will die, less T4 and T3 is released, and TSH will start to rise.
To begin with the antibodies can make people feel hyperthyroid. As time moves on, and greater damage occurs, the person may suffer with swings from hyper to hypo and back again. Eventually so much of the thyroid is destroyed that the person becomes permanently hypo.
The destruction of the thyroid is a slow process - it can take many years or even decades.
The best tactic to deal with Hashi's is to damp down the number of antibodies to prolong the life of your thyroid.
For lots of good ideas on how to deal with Hashimoto's I would suggest reading Izabella Wentz websites and book :
Still strange, if antibody's were not active, so thyroid will not produce T4/T3, Will TSH rise while I'm taking overdose of Levothyroxine and my T4 level at the top of the range? Doesn't make sense!
Your thyroid still has healthy bits which function as a thyroid should. So your results are not completely dependent on what your antibodies are doing.
If you have pituitary dysfunction then perhaps you should be treating on the basis of Free T4 and Free T3 levels only, and ignore the TSH. It could be difficult though, if you have to rely on your doctor for Free T3 testing. It doesn't get done very often, and these days Free T4 testing is done less and less.
I don't know much about how pituitary dysfunction is diagnosed. Having a scan is obviously part of it. But there are hormones galore produced by the pituitary. Has anyone tested any of these?
The treatment of central hypothyroidism (by doctors) is the same as it is for primary hypothyroidism - levothyroxine. This may cause problems though. TSH level has an impact on how much T4 is converted to T3. More conversion takes place when TSH is high.
You might feel better if you incorporated some T3 into your treatment or took NDT. But if you did anything like that you would have to find a doctor who was willing to prescribe or would have to self-treat.
If you want to raise your levothyroxine dose from 100mcg, try taking 125mcg per day for a few weeks. If you feel overdosed on that then try alternating 100mcg and 125mcg. If you feel underdosed then try alternating 125mcg and 150mcg.
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Hashimotos/low tsh but low t4 and t3 help
How to deal with TSH obsessed doctors...?
Suppressed TSH
Pituitary gland not producing TSH
Where to go from here?
