Graves' disease

Hi everyone I am new to this post.

I was diagnosed with Graves disease in Jan 2017 after asking my GP to do a thyroid test as It was the one thing they had not checked despite telling him all my symptoms for quite some time.It has been a bit of a roller coaster ride with medications and allergies to them.I have discontinued my propanalol as it makes me feel terrible, but continue with the carbimazole now increased to 30mg was first put on 40mg then 20mg because of allergies and now 30mg.Has not made any differencr

Contemplating if I should have RAI

Has there been anyone out there that has had RAI and hasnot turned hypothyroid and does not need to take any more meds?

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  • Hi ,

    I also have graves disease , diagnosed in May 2015 . I respond well to carbimazole . I also found out prior to my diagnosis that I have a lot of allergies . I cannot comment regarding the rai as I intend to stay on carbimazole for as long as possible . I have been drinking kefir milk for the last four months and I definitely feel better . I wish I could help more and we are all different but I want to avoid the rai or total thyroidectomy route . My t4 on diagnosis was 86 ( 10-26 ) . I am now in range as last bloods t4 was 17.6 . I take 5mg every other day . I started on 40 mg and eventually dose got reduced . I stopped carbimazole last September as t4 went to 11.4 . I then got put back on carbimazole in February 2017 as t4 was getting high again and my endo didn't want me to go hyper again . It's certainly not easy and you have to do what will be right for you .

  • Hi, I had Graves' disease diagnosed back in 2010 and was placed on Carbimazole to suppress and didn't work. Made me V poorly, hair falling out. It was suggested I have RAI but I refused on basis that a) it may not work at all and b) the doctors may need to do twice to suppress but may from second time stop thyroid working altogether. Put that with the fact that my hospital had me on Carbimazol for longer than recommended (Read the packet and contraindications, it is not for long term use), I opted to have thyroid taken out. My decision. May not suit everyone. But sorts it once and for all. I didn't regret it at time and still don't. Just regular battles with NHS on monitoring and drugs and blood tests.

  • It is a very difficult choice what to do at times but I suspose you have to make that choice what is right for you.I also have thought about all of the options but still not quite sure what to do but I am getting fed up with the constant feeling like rubbish on the meds along with those allergies that may not eventually work as it seems that most people eventually have to think about another options anyway when the meds don't work.Are you on any medications now? Do you feel much better.Hiw often fo you get bloods taken now?Thanks for the reply.

  • I was diagnosed in April 17 have been on Carbimazole 30mg and now reduced to 15mg. If it were my decision I would persevere with the meds.

  • Well I am glad that the carbimazole is working for you.My one was at first but then I started to have reactions to the meds.Well it has only been 5 months so I am trying to stay optimistic and continue with meds.Some other oeople have been on it for a couple of years so i will see how it goes.Good luck

  • That's a shame. Have they changed your meds? Fingers crossed all will work out for you. Good luck 😊

  • I am now on 30mg carbimazole.Possiblynot worked because I have been starting and stopping meds on doctors advise because of reactions but now take antihistamines when I need them now as I need to get control over it.Doctors did try to put me on PTU medication but i refused as not good for your liver.Sometimes I feel a bit of a nuisance when I go to the clinic as there are people with alot worse thyroid cancer etc so really should be grateful that I have a choice.Good luck to.

  • I hope it all works out for you. It's a rubbish disease affects everything .

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