Graves' disease

[Louisehamblin]

Have come off Carbimazole after a year. Have felt well for about 3 month on 5mg, then for a month on 5mg every other day. After 2 weeks off them started to feel tired, headaches due to resting heart rate of 80+. Now 2 months and I am so tired and struggling with concentration, pins and needles, headaches and anxiety.

I also take 20mg of propananol for migraines, which before thyroid issues gave me resting pulse of 60 but now is 80+.

Results 5mg every other day

June: T4-13.9, T3-4.36, TSH-2.51

No meds

August: T4-13.9, T3-4.42, TSH-1.63

Sept: T4-13.6, T3-4.34, TSH-1.19

Has anyone else had similar results and felt awful? Or is it just my bodies reaction to stopping Carbimazole?

[Fruitandnutcase]

Hi, I can't remember my exact figures but I know it took a while for my body to get used to my 'new normal'.

My TSH has gradually crept up whereas yours seems to be gong down although your T3 and T4 are still around the same.

I wouldn't feel comfortable with my resting heart rate in the 80s although for some people that is normal. I've had a couple of times when My pulse has startedraving and I've felt ill, last time I was thoroughly checked out ECG, chest x ray, blood tests etc but nothing unusual was found and it disappeared on its own and the doctor thought it must just have been done sort of bug. I find it very unpleasant when my pulse races, it's peculiar because it's ok when I'm exercising because it goes back to normal after a spurt of exercise but when I'm not dong anything and it's just raised - that doesn't feel good.

My pharmacist told me to take vitamin C when I started carbimazole so I always took 1000mcg slow release vitamin C plus zinc with it and just carried on taking it afterwards. I tried to eat healthily too, lots of fruit and veg plus fish and chicken and tried to cut out junk food. Make sure you get enough rest too, I think that's important for us hyper people.

I'd get blood tests to find out what your vitamins B12 and D, folate and ferritin are like - you want them well up in their lab ranges to support your thyroid. I gave up trying to get my doctors to do them so I just do them myself with Blue Horizons. I use their Thyroid 11 test

I also went totally glutenfree about two years ago to try and reduce my thyroid antibodies - it worked! So I am on a gluten free diet now.

Good luck with it all and I hope you feel better soon.

[Louisehamblin in reply to Fruitandnutcase]

Many thanks for this. I try to eat healthy but know any sugar even artificial sweeteners, caffeine and alcohol spike my pulse rate so have cut back. From the sound of it I may have to start excercising to see if that helps. Time, hopefully will help too.

[Fruitandnutcase in reply to Louisehamblin]

Exercise is good but don't go mad. I don't think too much exercise will do you much good either. I kept going to the gym and dong Pilates throughout the period when I was really ill. I went because I enjoyed both things before I was ill and it made me feel I was still human. I modified everything I did and my Pilates teacher is a physiotherapist so she saw to it that I didn't do too much. If you enjoy swimming (unfortunately I don't really) that's supposed to be good all round exercise.