Back to square one

I have been on Thyroxin for 30 yrs, no problem, then when Eltroxin was changed the problems started. Doctor put my meds up to 225 mcg of Levo daily and I just kept feeling more tired which is why I went to doc in the first place.

To cut a long story short, I changed doctors, stopped taking the Levo and went to see Dr Petefield, who said I was probably suffering Adrenal fatigue and on too much medication. He took me off my meds and advised natural thyroid and adrenal supplements, which I took, at first I felt clearer but still very tired, I went back on 100 mcg of Levo with the natural supplements on Dr Petefields advice. I didn't feel much better. New GP tried me on T3, by this time my blood test results showed very low levels of T4 and T3 and my TSH was in the 50s. I thought I was going to die, pulse went down to 40 and I ended up in A&E being told I had angina. Its been a nightmare.

I am now under a nice Endo who has put me back on Levo and my bloods are looking better again, I do have more energy and am now on 200 mcg daily. The tiredness is creeping back in again though, so my plan is to ask for NDT Armour on my next visit although specialists cannot prescribe this under the NHS.

My Ferratin and B!@ are all fine but I am told that there isn't an accurate rest for rT3? Only in France. To be fair my new specialist does listen to me and wants to get my bloods back to almost normal and if I am still not any better he will recommend a specialist in Cardiff who apparent ly has worked with people on NDT.

Just don't know what is going on with my system and at times have wondered if I have ME. Any advice and help from you would be welcome, its been a long and arduous journey and I am feeling very down about it all. I am taking herbs for Adrenal support and having acupuncture to help me get through the day as well.

thanks for reading this

9 Replies

  • it does sound like it might be reverse T3 The tests may not be terribly reliable, but people seem to get by on them.

    Can you get a printout of your 'fine' ferritin and B12 - and other tests, and post them on here with the ranges? What the average UK doc regards as fine, and what some folks actually need are not the same at all!

  • thanks Ruth, I seem to have convinced specialist that this might be the case, just have to wait until next appointment on the 20th. then I can post most recent results. just never want to feel so ill ever again.

  • Maui, you can order a rT3 test from Genova via They have to send it off to America so it will take 2/3 weeks to get the results back.

    If you have recent TSH, FT4 and FT3 results can you post them with the lab ref ranges? If you have low FT3 on 200mcg it is likely a conversion problem and you will benefit from T3 added to a reduced dose of Levothyroxine.

  • thank you Clutter, I am seeing specialist on the 20th and will get results printed and let you know, thanks for the tip on rT3 testing

  • I think you need T3. It isn't necessary to have low measured T3 in order to go on a trial of T3. The tests are not that helpful for a lot of people.

  • Aurealis, do you mean I need T3 as well as T4 because I tried T3 on its own and it wasn't good, I had heart pain and it seemed to make my body up and down

  • I feel very poorly without thyroxine. So I wouldn't suggest T3 only although some people have to. We're all different. I feel like my brain's in trouble without it. I was just making the point that your symptoms and results suggest you need T3 and the advantage of combo is that you can adjust the T3/T4 ratio to what you need. I haven't tried NDT though. There are suggestions that conversion of T4 to T3 becomes impaired after many years of taking thyroxine, and with ageing, in which case you need T3. NDT consists mainly of thyroxine not T3 although there is some. I also experienced difficulties when supply of Eltroxin stopped as I'd taken it for many years. However with T3 I found Wockhardt ok.

  • Thank you Aurealis, this is very useful information, I will discuss with my Endo, it makes perfect sense to me. Wockhardt is certainly much better, thats what I am taking at the moment.

  • I have tried to reply but it's disappeared?

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