Stuck with what to do?

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Hello ive had overactive thyroid for a year now i was fine for 8 months on my carbimazole but then despite having normal blood tests all my symptoms have come back. Ive lost half a stone and eat quite a lot so know theres something wrong. Ive just had my second specialist apt were he redone all my blood tests incl T3 and hes taken me off medication. Im experiencing all the symptoms and even he said I was a mystery, isit worth me going private? Im having more tests in 2 weeks to see of any changes to normal TSH levels. Anyone else experiences this? Im so lost and stressed out.

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  • Posted

    To become an empowered patient, always ask for and keep your own file on any tests done on you and learn what they mean.  Then when you post on Boards like this, you can post your test results along with the dose of meds you are on and that helps in getting good advice.  In Canada and most of the States, you are entitled to this information.  I was diagnosed with Graves in 2007 and am currently in remission.  I have been doing this since I was first diagnosed and it made all the difference in my recovery.  The tests routinely done to diagnose, monitor and follow this disease are TSH (Thyroid Stimulating Hormone), Free T3 and Free T4.  In addition, at diagnosis, you should be checked for antibodies for Graves disease TSI and TBII (sometimes they do TRAb instead of TBII) and Hashimoto’s TGAb and anti-TPO.  This will help you get a more definitive diagnosis as a cause of your hyperthyroidism.  You may have either one or the other of these autoimmune problems or both together OR you may only have nodules and not an autoimmune disease.   You will want to know this information.  Some doctors mistakenly treat this problem by TSH result alone and that is not correct.  It is the Free T3 and Free T4 that matters when calculating and administering medication to treat this problem.  In Graves disease, sometimes the TSH takes quite a while to normalize.  So in order to respond to you properly and be helpful, I would need more information from you as outlined above.
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    • Posted

      Hi linda. Ive had the tests for tsh t3 t4 and theyve all been normal for a year now but ive been kept on 5mg of carbimazole. My specialist has taken me off of it yesterday as he did antibody tests etc and they are all normal as well. Ive been suffering with the symptoms since october but all tests normal so know one understands why I am getting the symptoms still. Thanks for your reply.
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    • Posted

      If it were me, I would not accept from a doc “your tests are normal”.  I would want to know what my values are and where they fall within that normal range.  When mine were at the bottom of the normal range, I felt “hypo” and had the same symptoms as “hyper”, i.e. palpitations etc.  Also for me I found I had to decrease Methimazole slowly  by 2.5 mg at a time.  If I dropped it faster than that, I had rebound symptoms.  I could not go from 5 mg to nothing.  I have been on 2.5 mg for quite a while, am currently on 2.5 mg every other day and hopefully will be fully off when next I see my Endo. I know of other patients who are taking 1.25 mg a day. One other possibility would be it is an adrenal problem.  A cortisol test might help to show if this is true. 
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    • Posted

      My gp and my specialist endo have said there in the normal range im a bit lower than I should be but still in range. I was on 2.5mg of carbimazole from july to october as 5mg was too much. Then when my symptoms returned they told me to go back up to 5mg but hasnt helped me.
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  • Posted

    Hi Chloe, I don't know if this helps, but a similar thing happened to me. I was diagnosed with graves disease (june 2013) stabilised with block and replace regime, and then took carbimazole 5mg only. My blood results were very stable and I slowly came off carbimazole july/august 2015. In september a lot of symptoms returned; dramatic weight loss, hand tremour, rapid pulse, sweating, hair loss, not sleeping, my Gp took emergency bloods, but results were normal. It was very strange as I was convinced my symptoms were thyroid related.

    However, I took 3 weeks off work, relaxed, continued a gluten and dairy free diet and my symptoms resolved. I did take supplements, including vitamin d and iron, as they've previously been low, and touch wood, i'm still ok. Maybe it will stabilise for you. This forum (especially Linda) has been a really useful resource, so i would recommend reading through some other posts.

    But most importantly, don't stress, it makes it worse.

    Good luck x

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    • Posted

      Hi thank you, im currently not working at the moment anyway and ive been on medication until yesterday. I had blood tests for everything else as well and everything is normal. Its very frustrating as it seems know one knows what to do for me and the most stressfull thing for me is the weight loss.
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  • Posted

    Poor you. Hope you can find out the cause. Have you been tested for coeliac disease? My endo said to look out for symptoms. There may be a reason you are not metabolising your food rather than your thyroid affecting you. However, I'm not an expert at all.
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    • Posted

      No i havent. Il bring it up after my next blood test in 2 weeks. Its all thyroid symptoms as well not just the weight loss. Think hes taken me off the medication to see if it comes back, however the symptoms are all still there. Very confusing
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