Graves Disease!! Anyone else?

[Chocpot1986]

Hello all,

Just wondering if there are many other members on here who have Graves Disease and whether we could discuss our life/experiences. Usually I don’t think about it but the last few days I am stewing on it and it’s making me feel so so low that I have it 🧡

I was diagnosed at 24, 37 now and I had my thyroid removed in 2017 so on a full dose of thyroxine now. I barely think about it other than when I need a repeat prescription.

Even before I had my thyroid out it wasn't an issue, I need to consider it when trying to conceive and being pregnant as you can't take carbimazole but other than that no issue.

Is there something particularly worrying you?

Thank you for replying!

Main concern is fertility. I was on Carb, now on PTU as trying to conceive, been in range several months.

I think being a lifelong thing and some of the horrible symptoms and issues it can cause I feel a bit uneasy. Due to overactivity I got terrible anxiety and panic so am now on antidepressants aswell. Gone from being healthy never taking meds to all this, I am 36 only diagnosed last September after being blue lighted to hospital with tachycardia. I think because it has affected my life quite a bit I feel sad.

Do you have kids? How were you diagnosed?

🤗🤗

I was diagnosed as I lost 2 stone in about 4 months, had heart palpitations, I was shaky and hungry all the time. I also kept fainting and it was picked up on blood tests after a GP visit. Felt better quickly on carbimazole.

I have one child who is 7, conceived when I was 28 so 4 years after diagnosis with no issue and took PTU and was looked after very well in pregnancy. The dose of PTU needed to be increased once I was pregnant. I had regular blood tests after he was born and after 6 months symptoms came back very quickly, it was expected, and I felt awful but I was soon back on carbimazole.

I was advised to have thyroid removed as there are serious but uncommon long term side effects of carbimazole, as well as being 'overactive' your body is just working harder all the time so I was better to have surgery and be a full replacement dose of thyroxine for the rest of my life. My son was 13 months when I had it removed, he was too young for me to consider radioactive treatment. The surgery was very straightforward surgery and recovered well. I have almost no scar and like I said said other than a blood test once a year and repeat prescriptions it not something that affects my life.

It's easy for me to say as I was diagnosed nearly 14 years ago but it's very common, especially in women. The physical symptoms did effect me but fine once the carbimazole was working.

I had it about 6 years ago. I took Neomercazole for 18 months and that resolved it. I've not had a recurrence since. I did work with a naturopath and worked to reduce stress (the Graves disease started after an intense stressful event).

Same for me, I was stressed at work for a long period of time and then it started. It’s unbelievable really isn’t it!

This is all sounds positive!

As I have only been on treatment for just over a year I have a few months to go before they think about taking me off of it. Think I have an endo appointment in April. Yes the radioactive isn’t really an option for me either as I have a little one at home. The disease upsets me but fascinates me too, I knew so little about the thyroid before. So glad you’re well 🤗

Hi, I was diagnosed almost 12 months ago, currently on low dose carbimazole which seems to work well for me. Overall I'm feeling really well right now, fingers crossed it continues.
We'd finished our family when I was diagnosed (I'm 45), so I haven't needed PTU. I did have two miscarriages between my two children and I do wonder if thyroid issues were related to those.
In hindsight I'd been feeling symptoms for ages but had assumed it was perimenopause!
I hope TTC goes well for you OP x

Thank you for your reply!

Funny you say that I thought the same, maybe I was having early menopause or something but at 35 I was quite frightened by that thought!

The symptoms are awful arn’t they! I feel well now too but before I was diagnosed I was a mess lol. Sweating like a bucket had been chucked over me, shaking and angry all the time. Had almost every symptom apart from weight loss!

aw thank you I hope it goes smoothly would love to experience pregnancy again 😃😃

I was diagnosed during Covid. First lockdown. Shite consultant who took me off carbimazole without testing my TRabs after 18 months. 9 months later back to square 1.

Getting there again now but new consultant is equally shite and wants me to have RAI or surgery. He’s been told in the strongest terms not to suggest either again!

There is a brilliant Graves Facebook page that’s given me the tools to deal with consultants who don’t understand the disease.

Ah yes the rage! I was so angry all the time for about 2 years, I don't know how my family coped with me. It got worse and worse until finally being diagnosed and suddenly it all made sense. It was pretty awful.

I think I may already be in the Facebook group @Oppositioblue , as my levels are now in range I'm prepping myself for the inevitable fight for the TRAB test before I agree to stop the carbimazole. I don't ever want to go back to how I was.

I find it hard to get my head around that this disease can come out of nowhere? Xx

I was diagnosed about 20 years ago and took carbimazole for a few years. I had radioactive iodine treatment about 16 years ago and the symptoms vanished after that. I had a few thyroid function tests after the treatment and all were normal. Haven't had a thyroid function test in years but feel absolutely fine. Had honestly forgotten about Graves disease until I saw this thread!

Do you have any other autoimmune conditions or have you had your gallbladder taken out?

I had it before Covid and was on medication for about 18 months and was gradually weaned off it just as Covid struck. I never actually went back to consultant at that stage. Things have been fine…. It’s a shame I whacked on all the weight that I lost that’s for sure.

I am currently off my carbimazole (after 2.5 years) to see what my Graves is up to. Feeling a bit wired but that could be Christmas!

Bloods to check in the new year.

Did your consultant test your graves to see if you were in remission before taking you off carb? They need to check your TRabs to be sure. If they haven’t you could find yourself unwell again, very quickly.

No, but I have the blood form for the tests and that includes antibodies. I've only been off it 6 weeks but already feeling a bit shaky. Test first week in Jan.

Not that I know of. Yep still have gallbladder. I was diagnosed after a prolonged period of stress. Perhaps I always had it and was just never symptomatic until then? Never had trabs tested until then?

I was diagnosed in 2015 when I was 27 after a very stressful time. I was extremely unwell with it but after being on neomercazole for 18 months I was fine. I've been in remission since then.

Then in 2020 I had another stressful event and developed Hashimotos. I'd take Hashimotos 100 times over Graves though. I'm fine now on eltroxin. I get bloods done every 3 months and have to see the endocrinologist every 6 to 12 months until after I've finished my family.

I have PCOS too. My mother and brother also have autoimmune diseases but not thyroid-related.

Oh really! It’s strange I have heard some people
say they would prefer overactive over under active. It’s so interesting you have experienced both so can really say how you feel about it!

My overactive thyroid was extremely severe so that might be why. My T4 was 70 when I was diagnosed and I was swinging from over to under like mad for the first year on meds because I was very sensitive to them. My underactive wasn't as severe as I was getting regular bloods done and it was caught early and I found eltroxin sorted me out within a few months so I can't complain.

I had Graves in the late 20s and thought I was dying. I had tremors and palpitations and my resting heart rate was 130, and I crashed my car twice (something I never did before or after treatment). I had 18 months of carbimazole and was fine until my late thirties when I got hashimotos. I am infertile, I presumed it was thyroid related. My sister also has hashimotos and she needed years of IVF and steroids. There were no stressful life events to trigger ours, although several of our older generation family have thyroid problems, so I presume a hereditary aspect. I was the only one to have Grave's, though. I blame some of my weight gain on Hashi's. I exercise a lot, don't drink or smoke, and eat home made food but my weight has gone up significantly since diagnosis four years ago, although that might also be perimenopause as it seems to be gathering around my middle, which was never an issue before.

Overall I think it's one of the better chronic life conditions to have so I mostly just ignore it and have my regular blood tests.

Can confirm as per last post it’s one of the better ones to have! I’ve had Graves for 17 years, first episode after having DD1 and have had multiple episodes since. Have had more children since DD1 so avoided the radioiodine and hospitals/surgery terrify me. So I just live with it and take carbimazole when it flares. More recently I’ve developed Sjogrens and Lupus which are horrible conditions, and have affected my heart, so Grave’s seems almost harmless in comparison! I think it’s a very well researched and understood condition with tried and tested treatments, so try not to worry, just keep up with the blood tests and try and avoid stress (I know this is easier said than done!) and you’ll likely go into/stay in remission for years. If it does return, you can explore the treatment options that are right for you.

@Amber245 - ah I'm having tests for Sjorgens at the moment as I've had a horrible dry mouth for a couple of months. How did you get diagnosed with it? What were your symptoms?

I agree with some of what you’ve aid until you say s a well researched and understood condition. It isn’t. Consultants/endos don’t know the condition. They just throw more medication at your problem and then when that doesn’t work tell you to have RAI or surgery. Surgery doesn’t cure Graves’ disease. It just moves the condition to another part of your body and that can mean you become a patient of another consultant.