Graves’ disease / hyperthyroidism

[blossom27]

Hi everyone, I suffer with Graves’ disease and hyperthyroidism and are currently on meds (carbimazole 20mg) and I feel so crap. I keep having headaches, feeling dizzy and sick. Can feel my heart beating through my chest and like I can’t breathe- like I just NEED some air! I keep sweating like mad and have the shakes, my hair is falling out like no tomorrow, I’ve lost 3 and a half stone in 3 months without trying to, I just feel absolutely rubbish. I have an ache in my left boob which I don’t know if it’s related. I’m due an endo appointment at the hospital Monday and I’m thinking to ask them for some beta blockers. Does anyone have any experience?

Please, if you can, get Radioactive Iodine.

I LOVED being thin. It was the best. But this is literally the only plus with Graves.

@Sdpbody thank you for replying:)

honestly I’m not mad about being thin😂

i feel really drained on top though which isn’t great. I feel like I could sleep for England! I’m also not sure if it’s related and it may sound stupid but my memory loss is so bad at the moment, I keep forgetting literally everything multiple times a day and it’s getting to a point I’m actually quite worried!

I don’t think I can have the iodine as I have 2 young children at home😢 but I definitely need to explore treatments with the endocrinology doctor as I’ve been on 2 different medications at various doses and my thyroid levels just aren’t coming down!

OP I hear you! I'm on 20mg and beta blockers, feel like I'm losing my mind but GP won't refer me to endocrinologist as I'm not 'hypo enough' 🤪

If you can take 2 weeks away from them, or try and stay far away from them in the same house, then you will be fine.

Taking RAI will benefit you and their lives way more than the radiation will be harmful to them.

Please do look in to this.

Or you can have your thyroid removed.

Oh poor you, I had it twice. First time felt a bit crappy but was diagnosed incidentally- I was referred to an endocrinologist and GP prescribed propanol straight away and endo prescribed carbimazole. It was important to be seen by a doc as I ended up with a slightly complex regime of 'carbimazole to block plus thyroxine to replace, after a while - then a titration down until after about 2 years I stopped it all and was fine until 5 years later and boom, it was back and this time I felt awful!! Hair loss, super hungry, weak, diarrhea, emotionally wrecked, very weak legs... I really feel for you. This time I was seen by an endocrinologist again and he arranged radio active iodine - I was thankful to be under an expert for all this as it was quite a journey both times. Push for referral to an endocrinologist- they are the experts, plus they can check for eye. Disease. I must add that I was seen both times in different hospitals and first time I was actually on a rotation in the diabetes centre so I was in the next office to the consultant but I think I would have been referred anyway! Also, this was 15 plus years ago so and I don't work in the NHS anyway so perhaps things have really changed?

You know what they say though, be a squeaky wheel!! Good luck

I had this. Apparently carbimazole (and any other azole) is not good if taken for long periods. GP had me on it for a year and the endocrinologist was horrified.

I had radio iodine, had to stay 2m away from anyone for a few days, now I'm under active and on thyroxine.

My eye has reduced in size back to normal too (one had swelled due to the Graves).

Hi everyone thanks for your replies!

@Nameychango so sorry you’ve been through the same! It’s horrible isn’t it! im under the endocrinology specialists at the hospital, I used to see them every 3 weeks as I was pregnant at the time and was in thyrotoxicosis (I was diagnosed with graves and hyperthyroid 22 weeks pregnant) so I’m lucky I was fast tracked referral wise. I see them every 6 weeks now, which I can’t complain about. They’re very good I’ve found!

@Sdpbody I will look into the radioactive iodine, and look at my options on what would be manageable as preferably that would be the next step:)

@HappiestSleeping I also had no idea carbimazole wasn’t good for long periods! Fingers crossed they can help me treatment wise looking at other options

@mentalbandwidth ahhh that’s so frustrating! I hope they do refer you as I know they will help you massively!

Don't worry @blossom27 I was on carbimazole for 2.5 years and my endo told me he had patients on it for much longer than me! RAI is not for everyone.

But you do need some beta blockers - I was on propranolol which helped enormously in the beginning.

How long have you been on the carbimazole? It does take time to kick in, which is why you need the beta blockers to calm everything down. I think you need another chat with your GP.

@Swanhilde thank you! I am due to have another blood test with my GP although they haven’t had much involvement with my condition other than referring me to endo, I think they’ve sort of taken a step back and just followed up from letters sent from endo regarding repeat medication etc, as endocrinology have been my main point of management of my graves / hyperthyroid so far but I’ll have my blood test done and see if the gp can help further :)

I’ve been on medication for about a year now, I’ll definitely ask about the beta blockers!

The endo will get you sorted out. Beta blockers will help. 💐

*Sdpbody, I thought taking RAI mean that you are then hypo for life? And have to take thyroxine forever?

Sorry to post on a thread that's a few months old - how are you doing OP?

I'm on propanol and been diagnosed with hyperthyroidism and B12 deficiency - so likely Graves (from my googling anyway!). Had bloods again yesterday for endochrine and am starting injections in a week or so. I'm struggling with feeling hugely anxious still, despite the beta blockers (only on 10mg 3x daily) and am just wondering whether this really goes away? I actually think I have had this for a few years, if not decades and not had it picked up - cycles of anemia and anxiety since 20's, was burning keytones when pregnant years ago and anemic and anxious straight after birth with huge weight loss when breast feeding...

Does anyone else have a rash? I've got one on my shoulder and no dermatologist can diagnose it, which I am now wondering is part of the dermatalogy of Hyperthyroidism?

The brain fuzz is terrible but I have to say I was pretty convinced I had dementia, so I suppose it's more treatable. Eyes very dry and grainy, slight double vision. Not nice at all! How long after taking meds or whatever treatment did you all feel better?