Been ill for so long that I don't now know if I... - Thyroid UK

Thyroid UK
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Been ill for so long that I don't now know if I am well


I was diagnosed with hypothyroidism 18 years ago and type1 diabetes 44years ago. I am now 48. For the past 4 years I have been struggling with overwhelming fatigue and other ill affects of undertreated hypothyroidism. About 4 and half years ago I was admitted to hospital with accelerated heart rate of 200 bmp. Was then told my levothyroxine needed reducing at the time I was taking 300mg daily. It was cut to 150mg. My depression worsened, brain fog,blurry vision, overwhelming fatigue aching joints hair fall out and more. My insulin needs increased. I barely left the house. My anti depressants were topped up and maximised. About 2 years ago i started taking massive doses of biotin. But then last year my GP said my thyroid had got better and knocked my thyroxine down by 25mg to 125 mg. Then the symptoms came back stronger swollen tongue and more. I became aware of the biotin impact on my blood test results in April this year. I contacted my Endocrinologist at the hospital and explained I was taking Biotin. A difficult discussion but she then agreed for my thyroxine to be increased back to 150mg and more bloods. Obviously I stopped taking the biotin.

After 5 weeks my results

TSH 0.22

FT4 13.10

I have since spoken to my Endocrinologist and told her that although I am better I still had fatigue. She increased my dose by 25mg for Friday Saturday and Sunday only. I then took it upon myself to just take the increased dose so 175mg 7 days a week. Things have started improving my eye colour is back. My energy levels are much better in that I can actually stay awake and think.

I am not due for another blood test until September.

I just need to know if I'm doing the right thing and if there is anything else I need to be doing.

Some of my blood test results for May were shocking to me and others just bewildering.

Sorry about my rambling message I just feel I have nowhere else to turn to .

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Thank you for your reply. I have requested a T3 TEST from my Endocrinologist.

Good I was going to say get FT3 tested- but best if it was from same blood draw with TSH, FT4 as we all fluctuate results day to day, and otherwise difficult to compare/ work out what happening with all thyroid hormones. Do you know why you are hypothyroid eg are you Hashimoto's with thyroid autoimmune antibodies? Have you had vital Vit D, B12, folate and ferritin levels tested recently - need to be in upper half of range...worth doing as they too can be responsible for some of your symptoms. I presume you are only insulin dependent- don't take metformin/ gliclazide etc - only ask as metformin depletes B12.


If after 18 years of being diagnosed you are still not symptom-free it is good you are now taking things into your own hands and with the help of members who know more than any endocrinologists or doctors you should become symptom-free.

All blood tests for thyroid hormones have always to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps keep the TSH at its highest as that seems to be all that doctors look at. Being mindful that the TSH is actually from the Pituitary Gland and means Thyroid Stimulating Hormone as it tries to flag the thyroid gland to produce more hormones.

You need a TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. (If gp wont do all, you can get them privately through one of our labs and make sure you are well-hydrated a couple of days before blood draw).

Your GP should test B12, Vit D, iron, ferritin and folate and all should be optimal. If deficient we also have unpleasant symptoms.

Always get a print-out from the surgery for your own records (we are entitled by the Law to have them) of the results with the ranges. Ranges are most important as labs differ and it makes it easier to comment.

One step at a time and reading and asking questions, step by step you should improve and sometimes that means either adding T3 (liothyronine) to T4 (levothyroxine) or trying NDT (NDT is the very original thyroid hormone replacement which has been removed from the NHS as has T3 which means members have to source their own). We do not put information on the Forum only by private messages.

The TSH is meaningless if patient has clinical symptoms. The aim is a TSH of 1 or lower not somewhere in the range as doctors/endos believe.

p.s. if you can copy and paste some of the above info onto your Profile, so that members can look at it if they need some background info of your thyroid history.

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