Is it possible I should never have been medicated? Sorry this is a long one!

4 and 1/2 years ago I was diagnosed hypothyroid with a TSH of 16 but with a normal free T4 (not sure of exact figure and I don't know the ranges as am only now becoming aware of how little vital info GPs and specialists have shared with me over the years.) The test was taken as I was suffering with anxiety and severe insomnia. I was immediately medicated with 50mcg Thyroxine. After taking it for 6mths noticed no difference in my health at all, good or bad. I was retested and increased to 75. In just a few months I dropped about half a stone. This is not good news for me as I am naturally very slim. On returning to my GP with this complaint my dose was lowered to 62.5. I maintained this dose for about a year; my only symptom the weight loss which did not resolve.

About two years ago I began suffering what I thought to be allergic reactions where my body broke out in very itchy hives. It happened about 3 times in the space of a year. I paid for allergy tests and tried diff diets to no avail. In the meantime my thyroxine dose had been increased again to 75. About one year ago I began breaking out every day in random intermittent hives on my face and torso. A very embarassing and uncomfortable problem. My GP increased my thyroxine to 100mcg in Dec 2011 due to a very high TSH reading. After a few months on this dose I began to suspect it was too high; I lost more weight and now my BMI is too low. I currently have very sensitive dry itchy skin that breaks out regularly in hives, my weight is too low, my hair is thinning, dry and brittle. I am exhausted and still do not sleep well. After badgering my GP I reduced my dose to 50 in summer last year and was referred to an endo. The endo, on the basis of TSH tests, has now increased me to intermittent 50/ 75.

I feel like I am going around in circles. Is it possible that I do not need medication with a normal free T4 but an elevated TSH as I am more ill now than ever before and just so frustrated and sick of this merry go round? My most recent TSH was 4.2, range 0.2-4. Any help gratefully received (sorry for the life story).

6 Replies

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  • Can you post the details of the so-called 'normal' T4? Difficult to comment really without knowing how much T4 your thyroid was managing to output.

  • Sorry, just realised you said you don't know. This is relevant though. TSH rises because the thyroid is having to work harder to output the hormones. Eventually, your normal T4 may have fallen below range, and TSH risen yet further.

  • Thank you for the quick reply- after seeing yet another endo tonight, he drew my attention to the original 'normal' T4 level and has asked my to retest my blood for TSH and current FT4 so I will have an updated figure in about a week. Last April, I was at the end of my tether with the hives and quit my thyroxine entirely for a week (mainly to test if I was allergic to the tablets themselves) I then began taking intermittent 100mcg every other day. I dropped to 50 after seeing my GP and my next TSH tested very high yet my FT4 again was 'normal'. Although I don't remember the figure, I distinctly remember being told that FT4 was in the normal range. I'm just very confused and very fed up! I will update with my specific TSH and FT4 figures asap. Thanks again for replying.

  • It's a complicated subject at the best of times, so your confusion is totally understandable. It could simply be that your problem is with the thyroxine itself, and you need a different thyroid medication (like many here have discovered). But there is always a possibility that it's a pituitary problem and not a thyroid problem. Post the number details when you get them and then maybe we can help you figure things out. :)

  • Your adrenal glands are closely related to thyroid function, do you think the problem may lie there. Have you ever had a saliva test? Or maybe your pituitary as Red Apple suggested.

  • Hi- thanks again for replying. I have the thyroid uk info pack and just read the adrenal info which sounds interesting but docs have never mentioned this to me. I think I had a cortisol blood test once but was told the usual 'normal' response. I wouldn't even know where to start to be tested for pituitary/ adrenal function. Can I request it through my GP or would I have to see the endo?