Graves Disease

[EmoIsntDead]

Ok was diagnosed with Graves a couple of weeks ago. An urgent referral to endocrinology is currently 8 - 10 weeks but they've put me in propranolol and carbimazole in the mean time.

My heart rate had come down and the tremors have stopped but I feel worse now than I did before I started the meds! I'm so tired I am sleeping much more and I can't stop crying. I feel so ill and like I'm losing my marbles. I've still got 6 weeks till I see a specialist and I can barely function.

I've been doing some reading online and I've found some online support forums but almost everyone in them is in the US. The general consensus is that having a throidectomy is the only way to feel better long term. I'm seriously considering going private and requesting this rather than faffing about with meds for months and months, can anyone relate or offer advice?

I was diagnosed with Graves Disease in 2011 aged 24 and had a thyroidectomy aged 30 in 2017 after I had my son.

I was on a mixture of carbimazole and PTU in that time. PTU when trying to conceive and pregnant.

I had a thyroidectomy as basically the long term effects of carbimazole aren’t good and because of my baby I couldn’t have the radiation treatment.

I had my surgery privately and all went well, and have been on a full replacement dose of thyroxine ever since. Other than ordering my repeat prescription I barely think about it.

When I was first diagnosed the routine treatment was two years of carbimazole and then see where I was but this may have changed. Surgery was only discussed when I was fairly unwell after giving birth.

if you’re anywhere near Oxford I can recommend a private surgeon, if he’s still working.

I've had graves disease for almost thirty years they have never told me any long term effects of carbimazole and I was offered a thyroid removal when I was a single parent to a toddler my mom refused to babysit my sister said "I have a life you know" and my dad wasn't confident looking after DD and changing nappies etc same happened when they offered me radioactive iodine so I never bothered 12 years ago the last consultant I spoke to said my thyroid was dying off its still not dead and he has retired, in 2020 my dr referred me again and I never heard back

Anyway the carbimazole takes up to 12 weeks to work it's not instant like thyroxine propranolol can make you feel like shit but it stops the racing heart which is great fortunately ive never had to be on it long term just the carbimazole

@beachsandseaicecream I'm in Glasgow, but thanks :) I can't have the radiation either as I have graves eye disease. I really don't want to waste years messing around with carbimazole, I lost a lot of my 30s to health issues and I want to enjoy my 40s not feel like an old knackered woman!

Having your thyroid removed does not cure your Graves’ disease unfortunately. What dose of carb are you on? It does take several weeks for it to work which is rubbish when you feel so unwell. Are you on Facebook? There is a good Graves’ disease page there where you will get lots of information and can ask lots of questions.

Sadly consultants knowledge of the disease is not great so don’t let them force you into having surgery and having your thyroid removed. They tried with me constantly during Covid as it was an easy way to get me back to the care of my gp. I had researched and told them never to ask me gain unless my life was in danger.

I am in graves remission at the moment and on carb long term. 5mg every other day. It’s taken a while to get into remission. If I didn’t use that facebook page I wouldn’t have learnt about the disease, been strong enough to say no to my consultant and stand up for myself. I still have my thyroid and I am well for now.

Good luck. It’s a shitty disease but you can get better. Edited to add, if you have your thyroid removed you will still be medicated.

Took 2 and a half years but my Graves is now in remission and I have been off the carbimizole for 2 years.

Have regular blood tests to check my levels but so far so good. My endo had no problem keeping me on carbimizole for as long as it took.

It does take time but you will start to feel better soon. Good luck.

27 years on carbimazole

And counting I've had ONE remission lasted 8 months that's it