My story so far, I was diagnosed with Graves disease 12 months ago because I was admitted to hospital with a high heart rate, heat, tremors, I also had high calcium in my blood. I was put on 20mg Carbimazole 2 tablets, twice daily. I then saw the endo, who told me to keep taking the tablets at the current dose, nothing else. At this point, I had absolutely no idea what Grave's disease was. In December I again saw the Endo again and he told me to stay on my dose as my thyroid was still not stable. In February, I started to feel really tired, lethargic and began to put on weight, not a lot but enough to worry me, I've always been about 9 stone and suddenly, I'd added 6lb.
I again saw the Endo, or his sidekick and he told me my bloods were now showing I was underactive and I would be put on a 'block and replace' regime. I was a little shocked by this and asked why? He tried to explain that this was normal procedure but I wasn't happy, however, I got the tablets and started taking them. Three days later, I had an allergic reaction, my face swelled up, spots etc. My Dr rang the Endo and he told me to stop the Levo and half my dose of Carbimazole.
I have done this and halved them again, in fact, I was taking 1 20mg tablet every 36hrs but started to feel like I was going hypo again.
Apologies, I'm not that knowledgeable on Graves. They look a little on the hypo side, I would want to increased my thyroid meds on this but I am hypo and it might not be considered too bad for graves??? Optimal levels are tsh near 1 and t4/t3 levels in the upper third of range. Your tsh is above 1 and your T4 and T3 levels a little low. However, it can take a while for changes to show up in blood test results so you should always test 6-8 weeks after changes to see how they are once settled.
It might have been an allergy to one of the fillers. Quite a few of us have had issues with a brand called TEVA but others sometimes don't quite get on well with others. Worth trying a different brand
The best suggestion I have is to read and read as much as possible about graves etc so you are better placed to discuss with docs and make the right decisions.
I took 20mcg carbimazole a day for four weeks with no change then 40mcg all at once for two months and by the time I got to the endo I was hypo my tosh had gone from below undetectable to 7.0
I was told to hold off the carbimazole for 'a few days' - I went for five days in the end, but to start levothyroxine that day, think I was given 25mxg a day. Very low dose becaus of my age - I was 64 at the time.
I found that the first time I needed an increase in my levothyroxine I got hyper symptoms, first time I wrote on here to say pretty much what you've said, that I thought I was becoming hyper again and someone said I was probably needing my levothyroxine increased and that turned out to be exactly the problem. I found the same the next time I needed an increase.
Eventually I was taking 40mcg carbimazole plus 100mcg levothyroxine then my bloods got to where they wanted them and after one hospital visit about a year after my treatment started, I stopped both carb and levo and I've been in remission ever since although my TSH has gradually crept up. It was TSH - 0.56 (0.35-5.5) FT4 - 17.4 (10 -19.8) when I stopped treatment and stopped the carb and levo, then it reached TSH. 1.5 (0.35-5.5) FT4 15.4. (10.00-19.8) a year later and now three years later it is TSH - 2.58 (0.27-4.20) FT4 13.73(12-22) different lab range because I use a private company now but it has gradually crept up.
Have to say I felt great when it was below 1 and would love to stay at that level but the NHS dot do 'fine tuning' so I am where I am.
As Saggyuk says, read up as much as you can about your condition - start with ThyroidUK - .org and take an active part in your treatment rather than it being something that is 'done to you'.
How much Levo were you started on? Maybe you needed to start more gradually like I was. Hopefully someone will come along with other suggestions. I have to say that I found block and replace to be a very good way of treating Graves, my endo said first time I met him that they use the 'fast way' and that it would take a year and indeed, a year later I was discharged. Good luck with it all.
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