Hope someone can help please, Been on Thyroxine for 20+ years Hashimotos. Just over 2 years ago had total thyroidectomy due to large goitre. Up to this point on 175 mcg after op doc dropped me down to 100 mcg blood test then was free T4 23.6 TSH 0.03 I did not feel well on this and doc increased to 125 tests after this were 15.8 / 0.03, 12.7 / 0.31, 13.7 / 1.41, which was towards end of last year. Last couple months been feeling terrible ache all over terribly hair still coming out and getting breathless. Had another blood test this time 16.8 / 0.19 doctor put my dose up to 150 mcg and a new blood test in 6 weeks. Can anyone tell me if this is right direction or should we be looking at something else I did mention T3 and maybe I was not converting to my GP but went straight over his head. Would I be better off seeing an Endo?

9 Replies

  • You may not be converting T4 to T3 well. However, before you assume it's just the thyroxine, please get your ferritin, B12, folate, and vitamin d3 and A tested. You may need your selenium tested as well since this is required to convert T4 to T3 and is usually stored in the thyroid gland. If everything is optimal, the definitely you need a T4/T3 combo for your thyroid replacement.

  • How will you ever know if you are converting unless your T3 is tested? It would be the most obvious next step, before anything else.

  • I had TT eight years ago and have found by trial and error that I definitely need some T3 added to T4. There seems to be a huge resistance to this approach, however, and I doubt if you will get much help from an endo, unless he is one from Louise Warvill's list. Many people buy their own. It seems to me that TT patients need it more, because a proportion of conversion from T4 to T3 should happen in our non existent thyroids.

    It is worth pressing your GP to refer you to an endo and you may be lucky. For instance I know that the Endo department of my local hospital (Berkshire) gives both T3 and NDT. I saw an Endo privately and my GP practice now prescribes it but I am

    not sure how long this will continue given the state of bankruptcy in the NHS.

  • the most vital thing that needs checking is FERRITIN if that is below 70 you will not be able to convert the T4 in thyroxine into the T3 your body cells are screaming for

    Its the most likely cause of breathlessness etc and will need treating fast with iron plus at least 500mg Vit C taken 4 hours away hrom thyroxine and since it will take months you would also be much better on T3 ( liothyronone ) meanwhile

    Go back to your GP get Ferritin tested ............the above info is verifiable in research papers

  • To answer your question, yes you would be better off seeing a GOOD endo. (Good luck with that). You should have been referred anyway after a TT. Your GP is unlikely to have sufficient understanding of your needs and is probably embarking on a course of well-intentioned 'tweaking' of your medication, hoping to hit upon what suits you. The symptoms you describe indicate to me that you are not converting T4 to T3 properly, and I fully endorse the comments of the other responders above. It is a frequently recurring theme on this site that T4 works fine for some years, and gradually becomes less effective, particularly for us TT people. I had years and years going back and forth to my GP with ever-worsening symptoms like yours, only to be told that all my bloods were fine - I only started to feel well again once I found an endo willing to try T3, which has transformed my life. Your current medication is making you ill, and you should insist that your GP refers you to a specialist to sort it out - try pointing out that in the long term this will be far cheaper for them as you will be well and won't need to see them every six weeks!

  • Just another thing to add to the mix of good advice above - lots of the T4 is converted into T3 in the gut and so it is important to have healthy ones. I think many people struggle with gut health which could account for so many having low vits and minerals. However the other side of the coin could be that if the T3 is low then the integrity of the gut cells are compromised. Receptor cells in the gut are the second highest after the brain - I have read....

    Hope you soon feel well....

  • I had TT 3 years ago never felt quite right but gradually felt worse and worse. I had frequent visits to doctor with them suggesting every dose of thyroxine possible and having to give up work because I felt so ill. I tried to enquire about t3 and some doctors ignored me and others said it doesn't work I finally came to the end of my tether and lost my temper and insisted to be referred to endo the doctor gave me antidepressants and said I probably would not get any joy from them. But the endo was great and did prescribe t3 & thyroxine. I started to feel better the first day the brain fog cleared the first afternoon and I have been getting better and better in just a few weeks!! It has been a long battle but for me it was the answer I finally have my life back. I think you should give it a try be firm if it doesn't work at least you've tried, good luck.

  • Dr. Skinner found that most patients who had had a total thyroidectomy did best on Natural Dessicated Thyroid.

    You must get your T3 tested. Oh and always have your blood tests as early in the day as possible.

  • Many thanks to all for your very helpful advice and guidance, it all helps thank you again.

    On looking over the printed list my doctor gave me on requesting my blood results, I notice that out of all the many occasions I have had a blood test my T3 results are actually there for 4 tests, my last test a couple of weeks ago my T3 was 4.1

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