Need help talking to doctors and getting treatment

I had Tyroid gland removed in 2011 and have since been on levothyroxine. In the last 3 years my health has got worse and I have many symptoms of an underactive thyroid. Hair loss, eczema, puffy hands and feet and low mood. My GP and endocrinologist have said nothing to do with thyroid as levels are all ok. The symptoms are getting worse. I am really at a loss and don't know what to do next. Any suggestions on how to get some help would be most welcome thanks

7 Replies

  • Leanneeast, if you post your thyroid results and ranges (figures in brackets after results) members will be able to advise whether you are optimally medicated on your current dose and medication.

  • Thanks Clutter, will see if I can get copy from GP

  • Many people who have undergone total thyroidectomy find that they need T3 as well as levothyroxine to feel better. I wonder if your GP and endocrinologist would consider a trial of T3 on the basis that, whilst they claim your thyroid levels are OK, you don't feel well. Even Mr Toft writes that some patients need the addition of T3 and a TSH in the suppressed range.

  • I will ask at GP appointment and see if they will, when I have asked if there any any alternative treatment to levothyroxine they have both said no though.

  • Hi, I had a TT in 2013 thyca, I've always been on a suppressing dose & have been on thyroxine only from Jan 15 to Jan 16 ,recently I've been changed from 150 mg thyroxine to 100 mg thyroxine plus 20 liothyronine,I still felt bad after 6 weeks so it was upped to 30 mg liothyronine,now after 3 weeks of the new dose I'm feeling better,I wouldn't say top notch but nearly. The thing that might be of interest to you is that my blood result have always been textbook perfect & my consultant said any doctor reading your results would think they were correct but I know from experience that some people need t3 & do better on it,don't bother with blood tests until you come to the hospital next time,it's not good to get too many blood tests( now he tells me I thought) .hope this helps you X

  • I've also had a TT, in 2013, and the experience of having textbook perfect blood, but still so fatigued I could barely walk or get out of bed.

    I tried T4 and T3 combination, then treated my adrenals, and have now started self medicating with NDT. It's taken a while, and I've seen several private doctors as I wasn't brave enough (or well enough to research) to do it on my own.

    The NDT is very promising. I'm not yet up to my full dose, but brain fog is enormously reduced, and I can do much more in a day.

  • I too had thyroidectomy in 2011 and have been unwell since. MY blood results were textbook on Levothyroxine yet I could not walk, swallow, lift my arms or get out of bed, was so dizzy I just fell over, it was like being on a fairground ride, to name but a few symptoms. I was told also there was nothing else they could do but fortunately have a good GP who has been willing to explore all avenues and am now seeing a more open minded endocrinologist (though he is sadly retiring). I take NDT which is not perfect but at least I can function. It took a great deal of fighting and insistence though and that can be hard. People on this site were very helpful with their knowledge and experience. While I tried different combinations of replacement I kept a diary with dose, blood results and symptoms. My TSH has been supressed most of the time. As I told one Dr ' I hardly ever saw a Dr until this and I will keep coming until I am well then you won't see me again'. It is hard when you are feeling so unwell but as had been said post your results and people will help. Good luck.

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