My Journey with Thyroid, Need Clever Opinions

I will ty to make my post organized and informative:

- Three years ago I started to wake up early morning feeling fresh for a short while then feel fatigued, breathless, foggy brain.

- I went to many doctors in the past year; one of them cardiology doctor for low heart rate and he found I have low TSH ( 0.015) but still strange as this should make me hyperthyroid and fast heart rate not slow!!

- T3 and T4 were ordered; they both normal (around mid-range, T4 slightly below mid-range and T3 slightly over mid range).

- Endo thinks I'm sub-clinical HyperThyoid!!

- GP doctor suggested to do iodine uptake scan which came back very low 0.1% (Normal is 0.4-4%).

- I believed GP doctor who says I'm hypothyroid based on my symptoms and iodine uptake results.

- I waited a month to see if TSH will be normalized before starting any medications, and still very low but normal T3/T4.

- Antibodies test came positive: Thyreoglobulin abs 233H (ref. up to 115).

- Doctor suggested to start 50 mcg of Levo as trial to see if symptoms improve. He said will not look at TSH, as it seems not reliable and pituitary abnormality might caused it.

- After a month on 50 mcg of Levo, T3/T4 went slightly below normal range and TSH went slightly over range.

- Increased Levo dose to 75 mcg, both TSH and T3,T4 went to normal range and still having symptoms but feel clear improvement.

- I was hoping for more improvements, I decided by my self to increase to 100 mcg then to 150 mcg. Still T3/T4 within normal but TSH is very low.

- My last result of T4 after a month on 150 mcg increased to 80% of range (24.2 normal is 10-28). TSH is still low. Doctor didn't do T3 and refused to do rT3. With this increase I didn't get extra improvements in symptoms.

- B12 Vitamin: 264 (ref. 239-931). The doctor gave my 6 shots of 500 mcg of B12 once every week.

- Vitamin D in normal range but low 22.7 (normal is 20-50).

- I did cortisol both in the morning and evening, both came back within normal range.

- Ferritin (239 Normal is 20-300) and Iron 61 (49-181) both look normal.

My observations:

- I might need to reduce my 150 mcg dose of levo so, my T4 will not keep increasing and go over range.

- My symptoms is defiantly is not as bad as before levo. but still wake up in the morning with adrenaline like rush then crash before I get from my bed and be fatigued till noon start to feel good and normal at night.

- The time o my symptoms correlates very will with normal cortisol rhythm. (cortisol start to rise early morning and decrease afternoon). I feel very well at night and go to sleep normally.

- My thinking is I might have conversion issue! The doctor agreed to try T3 but I need to buy it online!

Could the edno be right, I'm sub-clinical HyperThyoid?

What else could be wrong? What should I consider to test or try?

Please I need help!

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8 Replies

  • Looks like your thyroid is playing up. You could have had a period of hyperthyroidism prior to seeing the doctor which suppressed your TSH but your fT3, fT4 were OK due to the thyroid spontaenously producing hormone. In your case it would have been better for the doctors to hold off any treatment for a few months and then do another blood test, in order to find out what was going on, even though you would be a bit ill for a while.

    I wouldn't increase your levothyroxine if it doesn't produce better symptoms, stay on the lowest effective dose, so that hopefully the pituitary can recover. I'd hold off taking any T3 for a few months. If your fT4 is mid range and your TSH remains very low I think it would be a good idea to check out the pituitary, at least get them to check out the levels of the other pituitary hormones. If you take T3 now it will suppress the TSH, mess up any futher testing and not give the TSH time to pick up. You may have some minor pituitary problem, which might resolve by itself or it could be that you have always had a low TSH due to some congenital variation. Better to hold off taking too much T4 or any T3 for a while as this will be the only chance to investigate the pituitary.

  • Jimh, good points to test other pituitary hormones. I waited a month before starting any medication but tsh stayed suppressed then started supplement T4. I will reduce it now as proved there was no benefit having T4 elevated to this level. Could this be conversion issue?

  • Recent research suggests low TSH reduces conversion but I'm inclined to try and find out why the TSH is low rather than taking T3 just now. Of course if three or so down the line you haven't got anywhere with the pituitary then trying T3 would be a good idea.

    You probably know, but just to be clear, I'm a patient not a doctor.

  • Yes I'm expecting you to be a patient.

    If I knew it is the pituitary not functioning well, how that's going to help?

  • If the pituitary is not functioning well it could be a pituitary problem which an endocrinologist should investigate or it could be that it was suppressed for some time and will take a little while to recover.

  • You have Hashi's, so I would be inclined to think that Jim's first guess was more likely to be right. But time will tell. You'll have to wait and see if the TSH rises. If not, investigate the pituitary.

    Just because the FT4 and FT3 are in the 'normal' range, doesn't mean that you should feel well. It's a vaste range, and it's where the result lies in the range that is important. Most people need their FT3 to be up near the top of the range to feel well. Mid-range is probably too low for you.

    I doubt if you have rT3 issues because the FT3 - so you say - is higher than the FT4 in their respective ranges.

    However, your B12 is much too low. And 500 mcg once a week is not going to help much. You need more like 5000 every day for the next few months. And best to take a B complex with it. That low B12 will be giving you symptoms that are very much like hypo symptoms, and will mean that the body can't use the hormone you are giving it. Are you supplementing your low vit D?

    I Don't think it's subclinical hyper because the Frees would be up near the top of the range, not hanging round the middle. But doctors tend to get all hung-up and panic about low TSH's. They Don't think about more logical explanations. :)

  • Greygoose, As mentioned above TSH rose over range slightly after I introduce 50 mcg of T4 for the first time. T3 T4 went below range too.

    Yes, in most lab works I did FT3 is slightly hire in its range than FT4 but never been over range.

    I do supplement for Vit D and waiting to see how it is improving. Same with B12.

    The doctor says you shouldn't feel symptoms from B12 as it is in range. I don't know if I will be able to convince him to give me that high dose!

    But thanks for you insights!

  • Doctors Don't know anything about B12 - or any nutritional elements. Just buy your own. It's not expensive and you can't over-dose on it as it's water-soluble. If you wait for you doctor to do something, you could die of old age!

    If your TSH is faffing about, it's almost certainly down to your Hashi's. In which case, suppressed is where you want it. Forget the TSH, just concentrate on your Frees and getting them to where you feel well. :)

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