Graves disease back again…what next?

[LoveItOrListIt]

I’ve had Graves’ disease twice in the past, both times treated successfully with carbimazole. I came off carbimazole just over a year ago and felt great. Blood tests at 3 and 6 months were both within limits. I had a horribly stressful time in autumn and winter which I think was the trigger for my latest bout. I’ve been feeling edgy and am struggling with my running so I took a medichecks kit and I’m through the floor in TSH with accompanying high t3 :(
I was told it would likely reoccur so not shocked but the last time, the consultant said next step was radioactive iodine or surgery, neither of which are appealing. I’m not sure why I just can’t take carbimazole constantly and why being hypo on thyroxine seems to be preferable to being hyper on carbimazole?
has anyone experienced radioactive iodine or removal surgery or indeed on a permanent maintenance dose of carbimazole? If you had the treatment are you now hypo and is that easier to deal with? Please share your experience

Wow @Thatsajokeright that is a lot! It's do ridiculous that we have to resort to private healthcare to get the meds to make us feel well.

Glad you've found something that works for you but so sorry it is so expensive.

I should have said, I have the Graves' Disease antibodies. It's definitely Graves'.

Hi I’ve got Graves and have been through the consultations about both radioactive therapy and surgery and decided against both! My endocrinologist has let me stay on PTU although this has been complicated by 2 pregnancies so I’ve been checked more thoroughly. I know lots of people with underactive thyroids and wouldn’t fancy their symptoms if I took the surgery routes! If your endocrinologist is good they should let you stay on the meds unless your levels are absolutely terrible.

I’ve been put on 30mg carbimazole while I’m waiting for the consultant appointment…which, even though it is private, is not until the end of the month. I’m on my last “funding” of private healthcare (fortunately I get it through my work as a benefit) as my healthcare provider said they wouldn’t fund any more treatment beyond this flare up as when it gets to three incidents, it’s counted as a recurring illness and isn’t covered 🙁 I also think that is a reason they push for definitive treatment…because they want to get the private funding for the pricy treatments…blood test and monitoring is oh so boring and not so lucrative as surgery or radioactive iodine treatment. (feeling super cynical today!)

I had Grave's starting just over 8 years ago. It would flare-up, carbimazole would bring it under control, I'd be able to wean back off the carbimazole and then it would flare up again. I had one sudden thyroid crisis that was very unpleasant.

As I understand it, carbimazole is not recommended for long term use due to the potential negative impact it can have on the immune system. I remember having a Get To The Front Of The Queue letter for a blood test if I experienced symptoms to check for this.

Grave's was pretty well known in the family, I'm at least the fourth member of the extended family to be diagnosed in living memory and all of us have been pretty unstable with it. Rarely going more than 9-18 months between relapses until choosing intervention. With me, it was so bad that colleagues could see a relapse coming on at the early stages before I could even feel it, and the constant retroactive changing dose of carbimazole to balance the on/off thyroid function had me drifting between zombie and manic.

I chose the RIT option over surgical removal. Things are a lot more stable on Levothyroxine. YMMV, but taking the intervention was definitely the right choice for me.

I have severe Graves Disease and had a life-threatening thyroid storm a few years ago which put me in ICU in a medically induced coma for 5 weeks. It is NOT to be messed with and needs strict control and monitoring by an endocrinologist.

Have you read about block and replace? It's where they give you meds to INCREASE your thyroid hormones AND meds to decrease them. Basically they give a dose of carbimazole or PTU (Propylthyouracil) as well as Thyroxine. One of the first two slows the thyroid output to 'block' it and the Thyroxine is given to 'replace' it. It's actually quite effective in a lot of people.

I had a hemithyroidectomy last year (I was meant to have the whole thyroid removed but there were worrying complications during surgery which meant they could only take half of it out). My thyroid levels are stable, within range (I take PTU) and actually it's better controlled than it ever has been.

Radioactive Iodine was described to me as being a bit like chemotherapy. I couldn't have RAI as I have a 2 year old (aged one when I had the surgery) and it would have meant I'd have to stay away from my child for a long period of time due to the radiation. It's extreme, but effective.

Thanks both for those insights. It feels like some kind of definite treatment will be required at some point although I will broach block and replace as an option with Endo.

Currently still on carbimazole…down to 20mg daily. Endo suggested that long term use wasn’t too problematic and suggested getting down to a maintenance dose of say 5mg and staying on it indefinitely so that was what we agreed but will probe on alternatives….in some ways though it feels like more medication when I’m after less!

Thought I'd join this thread as I'm in a similar situation. I've had 2 relapses and I've been on block and replace for 2 1/2 years this time. My situation is complicated by other endocrine issues which have taken a while to investigate. Although I'm totally stable on B&R I've decided to go for definitive treatment, mainly because there is a chance of serious side effects with carbimazole and also because AFAIK there is little data on the safety of staying on it for life.

I didn't want to have surgery because I've had previous surgery in that area, which would mean some scarring and increased risk of laryngeal nerve damage. Because of the job I do, any impact on my voice would probably be career-ending so I'm simply not prepared to risk it. Which leaves radioiodine.

I don't understand why B&R isn't more widely used. I've seen 2 colleagues struggle with tapering carbimazole doses to achieve the right balance, whereas I've found B&R really straightforward and I've never had periods of being seriously hypo. I think when you've been hyper, you get used to it to a certain extent and so being underactive feels particularly dreadful.

I hope we can all find the best solution for our circumstances!

Hi @Reallybadidea that’s so interesting about block and replace! It’s never been mentioned in any of my many endo consultations…I’m definitely going to ask about it.

also, what were you told about the long term effects of Carbimazole? I’d read online it was dangerous long term but when I spoke to my endo about it, she was quite dismissive of it being a problem and suggested it could be taken for years but critical to look out for any tell tale signs of a reaction.

id love to get a definitive evidence based evaluation of long term carbimazole use….has anyone see anything on this?

I have read through all the comments on this thread and found them really helpful, thanks to everyone for sharing their experiences.

I have had 2 x significant flare ups of graves. one in 2015 and The latest triggered by pregnancy in 2019, it took a while to get under control again. I had the radio iodine therapy last year which didn’t have any effect at all. I am loathe to go through it again as the effect it had on my toddler was horrendous, it took a long time for him to be comfortable with me even leaving the room after I came home as we had been apart for 3 weeks. I too feel really well on a low dose of carbimazole and don’t see why I need to come off it given nhs info online etc. i am exercising, working, sleeping etc. all the good stuff. My consultants are pushing for surgery (and even booked me in for it without my agreement…)

Feeling frustrated and at a bit of a loss! I don’t want to swap feeling well on a lose dose of carbimazole for surgery and potentially issues with an under active thyroid!

@user1488701379 hi! welcome to the boat 😁

you sound like you are in the same quandary although that’s amazing that RAI didn’t work….what a brave decision to do that with a little one too, I can’t imagine how difficult that would have been for you.

it’s really helpful getting perspective from those in the same boat. I dont know anyone in real life in a similar situation so swapping notes has been really helpful for me too. The power of mumsnet! 💪

Hi - I was diagnosed with Graves in 1998 and had several attempts to control it with Carbimazole. My understanding is that having an overactive thyroid is far more dangerous than an under active one, as an under active thyroid can be effectively controlled with Thyroxine, which is just a natural hormone replacement. My Great Aunt has Graves disease named on her death certificate - due to an over active, not under active thyroid...

Carbimazole couldn't control my Graves, so I had 2 x lots of RAI in 1999 - the first lot didn't work, so I had a far stronger dose (had to stay at home and away from pregnant women and children for 2 weeks - made me feel sick, but other than that was OK) and that did the trick.

Since then, I've been on thyroxine - the dose has altered over the years and I have annual blood tests to check my levels. I also get free prescriptions for life!

@DottyDotAgain gosh it’s hard to contemplate that it can be so serious as to be a cause of death…such a sobering thought. I’ve been really lucky never to have experienced a thyroid storm. I do wonder if even 30 years ago it would have been diagnosed before things got really out of hand…

I’m a bit confused - I have Graves Disease, much to the surprise of my endo, as I didn’t present typically. Anyway, I was put on carbimazole as part of the ‘block and replace’ treatment. Carbimazole completely stops the thyroid from working and thyroxine replaces the hormone to the correct amount. I was told the thyroid needs to rest for 12 months and may then recover itself and be kick started back to working normally.

In my case I teetered borderline for a while then went slightly under active so am now on a low dose thyroxine.

For info, both overactive and underactive thyroid can be life threatening. What I don’t understand is why prescriptions are only free for under active thyroid 🤷🏻‍♀️

the prescription thing is very odd @frazzledbutcalm. I wonder if thyroxin could send you hyper again? Are you testing levels quite frequently?

I think the free prescriptions thing is because if you have an under active thyroid, you will have to take thyroxine for the rest of your life - nothing else can be done to fix it. But if it's over active, you can have treatment, e.g. RI. I think the only things that get free prescriptions for life are things where no other options are available for something you will need for the rest of your life.

I do dip into being over active with thyroxine every now and then - I was on a mammoth daily dose of 225mcg for years - it's been reduced to 175mcg at the moment, which coincided with the menopause starting and seems to be fairly level now!

Oh very interesting….I surely have the menopause on the way soon (I’m 45) so am fascinated to see what if any impact this will have in the old thyroid hormones!

I've been on carbimazole for 25/6 years I've had three pregnancies on ptu two remissions lasting 12/18 months my thyroid is dying off naturally but very slowly I'm still on 35mg of carbimazole so it runs hot as anything my previous consultant said its burnt so high for so long it won't last much longer that was 9 years ago so who knows

loveit …. My levels are tested annually. They were 6 weekly, then 3 monthly, then 6 monthly, now yearly.

Ah yes dotty, good point. Although, I don’t yet qualify for free prescriptions 🤔 … there’s only certain other conditions that qualify too, not even all where treatment is needed life long. My daughter has to take medication for her liver for a minimum of 10 years then they will reassess - that doesn’t qualify for free prescriptions bizarrely. It’s a very odd system.

Well…more than two years on…I’ve just gone into my 4th episode 😔
Ive been off Carbimazole since August 2023 but over the last couple of months ive been losing hair, exhausted, shaky and started with the heart palpitations last weekend. Medichecks confirmed T3 and 4 way above range and TSH non-existent. I managed to get GP to prescribe carbimazole and refer to endo but I no longer have private health insurance so expecting a long wait on NHS.
Anyone discovered any new treatments over the last 2 years or had any success? I have no doubt I will be encouraged down the RAI or surgery to remove and 2 years on I am no keener to do either but am clearly a chronic relapser.

Before you’ve been taken off medication OP, have your Trabs been tested to prove you are in graves remission? Lots of consultants don’t do this. If you’re not in graves remission you will go overactive again. This may still happen if you are in proven graves remission but at least if you are you’ve got a fighting chance. Do you know if your consultant tested you?

Thanks @DJrocks I don’t believe my TRAbs were tested before I came off. I will make sure to ask for it this time though…I’ve been reading up and feel a bit more informed this time around.
Endo pushed for definitive treatment…says that increased risk of thyroid storm (I’ve never had one). I’m not convinced on that…

If you’re on Facebook there is a really good Graves’ disease page where you will get a lot of help. You’ll learn how to read your blood results and know more about the disease than your consultant. You’ll also learn about true graves remission and how to get your antibodies/trabs tested before there is any talk of taking you off carbimazole.

Consultants always push for a definitive treatment. It’s the cheapest option and it will get you off their books and back to the care of your GP. Your thyroid is overactive because of your Graves’ disease. Your thyroid is the victim of your condition. If you remove your thyroid, it won’t cure your graves. Your graves can therefore target something else like your eyes. Don’t let them push you into making a decision. You might need to make yourself heard. I know I have had to and it pisses my consultant off when I tell him surgery or RAI is not up for discussion.