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 🧡

when you say moves the problem, i assume you mean in the sense you get other autoimmune conditions? Treating Graves won’t impact that though - most people with autoimmune conditions have more than one. Of all autoimmune conditions I would say Graves is one of the most easily treated.

My 17 year old daughter has just been diagnosed with graves - well they're 95% sure they're just waiting for the antibody tests. She has been seriously unwell and despite being on medication for 3 weeks now she still feels bad. She was initially on propylthiouracil but this made her ALT levels go really high so she's now been changed to carbimazole. She's been told they will gradually wean off the meds over the next year or so and she should expect flare ups at some stage in her life. Is that your experiences? It all sounds quite scary to her as she's been so unwell.

Also any similar experiences and how long it will be until she feels more like herself?

Thanks so much

@Mamadoes I'm sorry to hear she's been feeling so unwell. Is she taking beta blockers? They helped me a lot with symptoms. Unfortunately it can be a slow process. It took me maybe a year to feel normal again but everyone is different. It depends how severe the illness is (for me, very severe) and how responsive she is to the meds (for me, extremely responsive which led to a lot of swinging between hyper and hypo).

After I recovered and came off meds I never relapsed, but I did develop Hashimotos disease instead which is easily managed with daily medication.

I have it. Diagnosed in 2005 with a T4 level of 84.

I spent a couple of years on carbimazole to bring it under control and then stopped taking that to see if it remained in remission. It didn't and recurred in little over six months so I was given radioactive iodine treatment. That got rid of my thyroid without the need for invasive surgery. I have taken a good dose of levothyroxine ever since and my T4 levels have been settled within normal range for many years.

I have, however, found it a constant battle to get control of my weight and I now have type 2 diabetes, which may be loosely linked.

@Anabella321 it's really reassuring it's hasn't reoccurred for you. I think it's quite severe - here thyroid hormones were over 100 the TSH was undetectable as the thyroid was working so hard. She didn't really realise how unwell she was, just that she kept feeling faint and not well. Looking back to just before Christmas it was if she was working on double speed - she was even speaking really fast and her emotions were swinging all over the place. We've had fantastic care so far (maybe helped by her age) but there are some symptoms she's finding difficult to manage - she's suddenly got double vision (it's been checked and they see no sign of thyroid eye disease) but it seems to have only come on since meds and it's making school really tricky. She seems to have one better day and then a really bad day. Even a simple walk to an appointment from a car park will see the colour drain out of her face. She so wants to get back to sports. Will she be able to do everything she could before once the medication is working?

@Topseyt123 did you feel awful until the iodine treatment? It is reassuring that people can find solutions and then almost forget about this disease - thank you 🙏🏻

She will be able to go back to normal it just might take a while. I found I lost a lot of muscle so even walking up and down the stairs was hard and I couldn't open jars or heavy doors but it all came back and I don't have any lasting effects. Some symptoms (palpitations in particular) stuck around for a long time but eventually went away. I took beta blockers to control them.

Your poor daughter it sounds like she's quite severely hyperthyroid at the moment. It will improve now that she's on meds and it sounds as though she's receiving good care.

Hi @Mamadoes - I had similar levels to your daughter when I was first diagnosed. I was put on a high dose of carbimazole and beta blockers. This was for about 6 months then I weaned myself off the beta blockers and my Endo gradually reduced my anti thyroids.

I began to feel better within a couple of months and remained pretty much so. Your daughter will get to know her symptoms and when they're out of wack. A couple of times I had to have my dose increased temporarily as I could tell my TSH was low.

It's took 2.5 years but I am now completely off the meds and my thyroid is so far behaving itself 🤞 I have regular bloods to check to make sure.

And yes, I was able to go back to my running after not being able to walk up the stairs.

@Anabella321 she is on beta blockers but they think they're maybe contributing to making her feel faint as she has very low blood pressure. This is all so new for us it's really great to hear stories like yours.

@Swanhilde that's great to hear! I think she's kind of relieved to have a diagnosis and justification for how awful she's been feeling - it's crazy really that she had a heart rate of over 140 on standing, palpitations and feeling faint and she'd just carried on with all her lessons and sports!

It wasn't until I fell over at work and couldn't get back up that I did something about it, @Mamadoes . Looking back that was madness, I was shaking so much I couldn't hold a cup of tea! Amazing what we put up with but the good news is it's usually very controllable.

@Swanhilde wow you must have been shaky! I think it's hard when something isn't blatantly obviously to realise there's an issue, or indeed for others to sympathise

I remember the hand tremors (more like an earthquake really). I couldn't hold drinks without slopping them, or flip things over on the grill without a disaster.

The weakened leg muscles were also a thing.

All improved slowly but surely as it came back under control with the treatment.

Hello. I have this. I was then diagnosed with premature ovarian insufficiency. So I am now having ivf using an egg donor.

If you are worried about your fertility make sure they are doing appropriate tests or go private for them if you can.

I could feel rough, but it crept on so gradually and insidiously that it still took me a while to clock that things weren't right. For me the worst things were the tremors, muscle weakness and having the most irritable bowel in the district (sorry for too much information). I could hardly dare walk down the road after a meal as I couldn't be more than 30 seconds from the toilet.That is because of how much the high thyroxine levels speed up the metabolism.

I found the radioactive iodine a good permanent treatment which avoided the need for surgery. I still have IBS flare-ups many years on, but I take Loperamide for those and am otherwise OK.

I remember being told that the meds to take control of the Graves Disease would appear to be quite slow acting because of the way the body stores the thyroxine it has already made and so levels will drop only slowly.

I was diagnosed with it when I was 21.

I was on carbimazole for a few months, then had a partial thyroidectomy.

My thyroid has functioned normally since then.

I've just had my 60th birthday. Get regular blood tests (annually) but no need for thyroxine yet.

Oh, and I've had 2 children who are now adults.

You have my utmost sympathies - My DH had / has Graves' disease - but found it very difficult to control with carbimazole. He ended up having surgery to remove thyroid about 3 years after diagnosis.

It took him about 5 years to feel well after the surgery. For 90% of people it is fairly immediately successful and the eltroxin works fine - he was just unlucky. Exceptions like him are not well served by the endocrinology profession where if your numbers are in range but you still feel like shit they all just shrugged and said it was more likely a mental health issue which it definitely wasn't!

The endocrine system is so complex with so many different hormones etc that it can be difficult to get the balance right with meds.

We ended up seeing a GP trained in functional medicine and A different medication regime (armour thyrpid plus eltroxin) and a bit of patience and he is back to full health and work.

we found healthunlocked a very good resource - they have a graves disease, thyroid and hashimotos board there.

Hopefully your symptoms will be really well managed with the medication but if you go for surgery / radiation then don't accept the standard medical regime if it doesn't work for you.

I don't I have hashimotos but my 13 year old dd has it. Diagnosed at 10. It has been a living hell.

Hi @Chocpot1986
how are you doing now?

Hi!

I am doing well thank you levels are still in range and it looks like I will come off my meds next month!

Been TTC for most of this year though and suffered a miscarriage in May. Hoping my time will come soon.

How are you? Sorry I don't remember if we spoke on the original thread.

DO NOT come off carb unless your Trabs have been tested and you are in remission. If you are not fully in remission, you’ll be back to square one within months.