Stuck with what to do?

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.

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

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.