Graves' disease relapse

[Justme77]

I was first diagnosed with Graves' disease in December 2014 after having health problems during my pregnancy. I started block and replace treatment soon after and finished in August 2016, after that I went into remission until 2 weeks ago when I found myself in a&e . This time around I feel horrendous, I'm waiting for a scan to see what's going on again ....... just wanting to say hi !

[silverfox7]

Sorryyou have had a relapse. I don't know much about it but I have read many posts saying whatreallyfedup123 has said so just wanted to put some weight to that really. Hope you soon feel better and they put you back on medication.

[twinkleyt]

I was told years ago that I would be on Carbimazole at first and then I would be taken off it to see if I was cured but odds were that it would return within 2 years and then I would have surgery which is 100% a cure. I was too young to insist on having the surgery first but it did return and I was diagnosed as dangerously ill. I was put back on the Carbimazole for 6 months, then 3 weeks in hospital taking iodine in milk to quieten my Thyroid right down before the partial Throidectomy. True to forecast I was cured permanently after that.

I had unnecessarily been ill for 4 years in my 20s when I could have had the op at the beginning as I had really bad side effects on being overdosed on the carbimazole. and an allergic reaction to the staples they used instead of stitches for the operation.

Don't think they use staples now.

That was 40 years ago.

Is block and replace the use of carbimazole and Thyroxin?

[Justme77 in reply to twinkleyt]

Sorry to hear you had such a rubbish time , yes , and the endo told me the block and replace ' resets ' your thyroid and I think around 50% fall into remission. This time around my FT4 is 107 ( 9.0 - 25.0 ) and it was my heart rate that took me to hospital. I'm on Carbimazole and Propronalol and I'm just starting to feel a difference .

I'm thinking that surgery would be my better option now. I have a nodule that's appeared, my thyroid feels like it's increased in size , I'm waiting for a scan to check what's going

[Bablu1]

I’m so sorry to see you are feeling poorly. Please avoid RAI and even surgery if you can. I had a sub total thyroidectomy in 2001 and it took years and NDT to feel anything like normal again.

I am sending you lots of healing energy

[Justme77 in reply to Bablu1]

Thank you for your advice, its so lovely to have found a place for advice and support .

[437jd]

I’ve just stopped block and replace and I’m dreading being in your position! It sounds like you responded well to previous meds - is it an option to repeat carb then block and replace again? X

[Justme77 in reply to 437jd]

Fingers crossed you that you don't relapse ! I felt great after block and replace , yet was advised of a more permanent option if I relapsed

[summer1308]

Wish I had never had RAI it took me firing DRS and educating myself I am finally on WP Thyroid and doing better but insomnia is the biggest problem some days I go on 3 hrs of sleep.

GOOD LUCK — summer1308

[Justme77]

I've never really wanted RAI , it was more about being in quarantine but I'm glad I've now got more info , thanks

I've learnt a lot more from here already !

[Cat4health]

Check out ElaineMoore.com. She's an expert and has lots of really helpful info. I found just informing myself more lead to a greater sense of control which is something that gets kinda stolen when we relapse I think. Sending lots of well wishes

[Justme77 in reply to Cat4health]

Thanks Cat4health , I'm certainly not feeling in control this time around !

[summer1308]

Thank you will have to give that a try

Summer1308