Graves disease

[EchidnaWombat]

Hi, I was diagnosed with Graves disease in july. Lost nearly 5 stone off fat and muscle in just a few months. Got treatment, carbimasole, and felt much better after a few weeks. But still struggling with tiredness, muscle weakness and insomnia. Hoping someone could tell me their stories of graves disease? I've put on 5kg in less than a month and I'm not eating any more than before. Will I put all 5 stone back on. Dreading Christmas and its food temptations.

Sounds like your thyroid is starting to slow down again, have you had your levels checked recently? You may need a change in dosage.
As for all the other symptoms, that will be down to the Graves. It's going to be trial and error to find what works best for you to manage it.
I'd ask your dr to do a full blood check, iron, vitamin levels even celiacs (if they'll agree) and then look into managing your diet.
Some people have found success with removing gluten and dairy, others have taken supplements.
Lots of research needed, there's quite a few fb groups with lots of different diet ideas.
Can't tell you what's worked for us, we're still battling thyroid levels

Hi, thanks for replying. I had my levels checked two weeks ago. My levels had gone up from 16 to18. But still in normal range. Struggling with my mood. Feeling angry and snappy, anxious and sad. Hot all the time, high heart rate. Cant take propanolol as got Raynauds. Endo reduced my carbimasole last week from 20 to 10. Was on 40 initially as very hyper. Vit D and B12 were low but now they are normal. Folate low so now on supplement. Will try cutting out gluten and see if that helps my weight. Thank you.

Which levels did they check?
You really need TSH, T3 and T4, plus the scales they use for "normal range" to be able to compare where they're all at. This gives you the chance to find your optimum levels to work towards in the future.
Your normal may not be the same as someone else's.
The moods etc are a complete nightmare (I'm partner of a Graves suffer) and if you notice a change in them it's time to get some bloods done again, especially with you reducing meds to more of a maintenance dose, it may well be too low or you may have swapped sides and are now in the hypo camp (weight gain might coincide with this).

Forgot to add, when you have bloods done it's best to do it as early in the day as possible, your TSH levels are higher then than afternoon/evening. I think they peak around 5am ish so the closer you can get to that the more accurate a figure you'll get. I also think they advise to try and do it before you take meds too (you'd need to double check that)

Thank you

I had Graves disease for 2 years and was on Carbimizole too. My thyroid level has been ok for the last year and hoping to be signed off at my next consultation next year. I suffered with heart palpitations, itchy skin, weight loss and tiredness. Any questions feel free to ask :-)

Thanks for the reply. Did you put your weight back on makingyourmindup123? My endo said I'd probably put it all back on and it's depressing. He said I could level out again and never get another episode or that I'd need surgery or radioactive iodine treatment. I don't like the not knowing which way it will go and the constant to and fro to the doctors and endo. Hard to juggle all the appointments around work and child care.

I feel so much better than when I was first diagnosed. I was breathless and itchy and had bad tremors. My heart was really high and i had lots of muscle weakness. After feeling great for a couple of months i've just started to feel a crap again and I'm so tired. Will try the new dose and see how it's going at my next check in Feb.

Yes I did put it back on as soon as my thyroid level normalised. It took two years for it to come under control but now my levels have been ok for a year. I was last chance saloon and facing the iodine / radioactive treatment which I didn't want. Surgery was last resort it seemed. Like you, the blood tests and appointment were really regular but tablets do seems to work well, you just need patience

I had it when I was 21. I'm now 52!

Same treatment as you, but I ended up having surgery and been fine ever since.

Weight did go back up when I was on the carbimazole but stabilised at normal levels after surgery; starting to creep up again now but I am menopausal - and thyroid has functioned perfectly since I had the partial thyroidectomy 30 years ago. Still get my levels tested annually just for checking.

Thank you for your reply. My friend just had the radioactive iodine treatment and was really ill for a week after so that's put me off it. I have a baby too so I couldn't go near her for a few weeks if I had it. The thyroid surgery feels like the best option but I will have to get through 18 months of carbinasole first.

It's annoying how vague it all is isn't it! Thyroids also take AGES, even when it comes into range there is a lag of a few months for your body to catch up. Radioactive iodine didn't work for me so I'll probably have surgery eventually but as for weight I lost some lean mass (2kg) before diagnosis which I was hysterical about then gained a stone of pretty much pure fat with treatment horribly quickly but then it all levelled out. Especially when I was up to walking and running again (was too ill for a while, out of breath etc it was horrible).

Do you have the eye involvement too? (I don't)

Hi I was diagnosed with Graves' disease about 4 years ago at the age of 24 and was on carbimazole for 18 months. I did put on weight and thought that was me at my 'normal' weight but when I came off the carbimazole I found it much easier to lose weight.

My thyroid was normal for a year and then went overactive again this year. I was off work for months and felt terrible, the worst symptoms for me were anxiety, insomnia and fatigue.

I had a choice between surgery and radioactive iodine. Even the surgeon advised against surgery so I had the rai 3 months ago. I am now off work again as my thyroid is now underactive so ive been ill for a full year now! I also have thyroid eye disease which made my eyes slightly bulgy.

If you have any questions I'm happy to answer them.

Thank you for your replies. Lexatin glad you are back running. My eyes are OK just dry and itchy. Hmu05452 sorry to hear you've been ill so long. Im just at the beginning of my thyroid journey I guess.
I rarely caught as much as a cold before I was 33. Then got one thing after another. First i got ideopathic intracranial hypertension (IIH) that acts like a brain tumour and took me 3 years to feel normal again. Then connective tissue auto immune disease. Then I got pregnant my IIH came back and now I've got graves disease. Just fed up of hospital's and feeling poo.

What a miserable time of it you've had. Hopefully you'll be feeling much better before too long. Endocrinologist told me almost all his Graves patients are 'cured' by RAI or surgery but lots of us go into remission anyway, they just can't tell who yet.

Not sure I could say I'm 100% the same as before, have to pace myself and need more rest (I found resources for ME/CFS online helpful) but I finally managed a marathon last month (was training for one when my thyroid first went hyper a couple of years ago) and for a while there I couldn't walk from one room to the next without getting out of breath. Lots of strange things happened on carbimazole, I started having periods every other week (post menopausal!) it seemed like there was nothing the thyroid didn't interfere with!

I've had graves for almost 19 years one remission for almost a year before relapse I'm now on 5mg carbimazole a day my lowest ever dose I'm usually on 20mg a day they think my thyroid might be dying off naturally I was offered other treatment but as a single parent it was unworkable

Thanks for all your replies. Let's hope we all to into remission soon.