Graves and Confused what to do?

[Jillanne-64]

Hi all, very interesting and informative site. I was diagnosed with graves in October 15 my worst symptom was the racing heart which left me unable to sleep. I was started on carb and then put on thyroxine after 6 weeks. I absolutely hated taking the carb as I am so anxious about the side effects. I was so worried when I went abroad for my honeymoon I stopped taking them. I restarted when I came back and have been taking them for 6 weeks. I see the endo on 1st of March but the nurse has already suggested that I should be considered for RAI. I'm feeling really flat still have the racing heart and sweats even after taking the carb for all this time. I take medication for blood pressure anyway so they would not give me anything to help with this although before the graves on blood pressure Meds it was 120/80 it now ranges 160/90. Can anyone give me any advice. Thanks

[Alexkjones]

I'm 2 years into graves. The thyroid takes months rather than days to change how it's working. I was on beta blockers which you need to settle the heart rate with the carbo for about 2 months. The side effects with carbo are very rare so try not to worry about them. After 2 months I went onto the block and replace regime carbo and Levo for 18 months and finally stopped all meds in October last year. Now in remission. Yes the thyroid can get better but it's a journey and of course it may relapse again. I'd try for remission first before rai as rai can be bad for graves due to ted. Rai can Cause Thyroid eye disease. specialists are keen to rai people. But Do some reading before you make a decision and do what's right for you. once you rai there is no going back. It's okay to say no to rai. I think of it as an option at the end of my journey if I relapse but I would push for thyroid ectomy ahead of rai. Hope this helps. Alex

[duster]

Hi

I've been on the block and replace for over 5 years, at first I was a bit worried about the side effects but now I'm ok.

I have refused to have the rai due to my thyroid eye disease. Luckily I was treated for it and am back to normal now but would never risk the rai incase it affected my eyes again.

It took about 3 months for my symptoms to disappear completely after starting the carbimazole.

I've not had many problems.

Hope you're feeling better soon.

[Silver_Fairy]

It's way too soon for anyone to be talking about RAI! Seriously, do not let anyone rush you into anything permanent, you've only been diagnosed for four months!!

What dose of Levo are you on? And what dose of Carbimazole?

Do you have your last test results (with ranges) ? Would be worth posting them in a new post to see what members think, personally I think you sound hyper still.

It's not necessarily the amount of time on Carbimazole but the dose that's important. Also a racing heart is far more dangerous than Carbimazole.

[mothsballs]

Hello Jillanne I have Graves and have had it for over 20 years. I was on and off Carb for many years on different doses and was ok even when I had to have 40mg of it. Also had block and replace. It does take quite awhile for the racing heart to calm down. It is more like months not weeks. A racing heart is more dangerous than the carb. The only reason I came off it was it was no longer working and the racing heart, and risk of brittle bones, was I was told dangerous, I then very reluctantly had RAI. If the carb was still being effective for me I would have stayed on it, rather than rush down the RAI line of treatment. I am now underactive since having RAI which is very common. If you are worried about the toxicicy of it which it states in the leaflet you could always have something like milk thistle which is a good liver cleanse. Carb is an expensive drug at over £100 compared to the cost of levo, so this might also be a factor as to why you are being pushed into having RAI so early.

[Jillanne-64]

Thank you all for the advice. My bloods results are now Free T3 7.2 Free T4 19.1 THS <0.01 I am on 20mg of carb and was taking 75 Levothyroxine but not taking that again yet as still not blocked enough. I don't know what these readings really mean as I have not studied enough about it to interpretate. Any advice on this is very much appreciated. I totally agree that RAI is a bit early to consider having read a lot of the posts on this site I need to persevere a bit more before making any decisions.

Thanks again.

[Jillanne-64]

Hi would you be able to look at my results and give me any feedback?

[misky]

Hi Jillanne,

I my case it took over a year to get a normal heart rate again, even though the carbimazole was very effective and I was euthyroid. My whole body had to be "recalibrated" so to speak. I think it was more like two years, so even after I stopped the medication and went into remission (still am), that my heart started to behave normal again. You really need to give your body some time to recover. Please take your medication as directed, don't stop without consulting your endo. Beta blockers helped really well with the high heart rate at the start. I had a resting heart rate of 196, so I basically felt like dying and couldn't speak or walk anymore. The beta blockers kicked in straightaway. You can adjust the dosage according to how you feel.

It will get better! I have been so terribly ill, but now, exactly 4 years later, I am in remission (for 3 years now) and feeling well. I remember at the start feeling so desperate and scared, but it all got better. Hang in there!