Autoimmune and off to endocrinologist

Hello everyone, this is my first post so here's a brief history, around 2 years ago my doctor prescribed levo thyroxine for autoimmune hypothyroid problems at the same time he checked for HLA B27 antibodies and these were positive also and explained a lot of my joint health issues. Back to thyroid.. Over the time I was taking levo I'd pretty much say there was little to no improvement in energy levels, brain fog, muscle aches etc etc - doses were increased, from memory to max 150mg. I got fed up with feeling no better and decided to cease levo , waited six weeks and asked for bloods, was told to get back on levo to then be told to drop the dose and after another test was rang immediately and told to stop levo altogether and to start beta blockers as my pulse was racing. After a week or so and more bloods I was put on carbimazole 20mg antithyroid and this was increased to 40mg soon after more bloods that indicated a drop in thyroid levels but still sky high. I can't give any figures as I don't have them but from what I've seen I think one read that had a range of 3-30, I was 67 and now 47 ?? All very vague, sorry. So I'm off to the endo next week and also the cardio unit to check for damage to my heart. I'm feeling a little bit lost in my diagnosis to say the least, especially as my GP has said he now knows he shouldn't have put me on levo in the first place. I'm probably expecting too much to find someone with the same issue ?? But any tips for my endo appointment would be great. Thank you

4 Replies

  • Have you been tested for Hashimotos ?

  • Welcome to the forum, AIHelen.

    It's fairly common to start off hyperthyroid and for thyroid to burn out and become hypothyroid but I've never heard it happen the other way around.

    I would ask your receptionist or practice manager for a copy of ALL your thyroid results and ranges, including antibodies, and a list of the thyroid prescriptions you were given, to show your endo so the endo can work out what was happening. If you have them in time you can post them in a new question for comment.

  • Popped into GPs today and got print out of nearly all results, I'm missing my original TPOab antibodies result but have the second after diagnosis and some levo treatment.

    TPOab 207 April 2013

    TSH is almost always below range and since last November at less than 0.01mu/L but took till July to consider dropping levo

    Free T4 has always been above range anywhere from 19 to 67 pool/L on a scale of 11-24 and has always climbed... it is now in decline with the carbimazole meds

    Just seeing these on paper has educated me a bit, but any more input ahead of my endo next (my first endo) week would be great. Thanks

  • An update: saw the endo today for first time and have a new label... Graves' disease and they're going to start block and replace therapy until Dec16 with a 50/50 chance of recurrence after that. The response to my claims of feeling the best I've felt in YEARS was that "yes that's due to your toxicity" I've been toxic for almost a year looking at the figures alone and I'm more in favour of it being a benefit of a course of regular naproxen/omeprazole for a back pain flare a few weeks back ???

    Going to try gluten free with the family and really push to keep this newfound positive mental attitude! Also saw the cardiac team today and results pending but I'm hopeful no lasting damage but at least good markers gained going forward. I'm still quite overweight 5'7"/15st+ so have enjoyed the weight loss side effects of Graves, be nice if this could safely continue (with minimum effort!) ever the lazybones x

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