Graves Disease, any experience

[mkz10]

Anyone with experience of Graves Disease? Was diagnosed 13months ago and really struggling to get it under control. Endocrinologist wants me to destroy or remove my thyroid but I am very reluctant to do that, having read some online accounts that it just replaces one problem with a different one.

Currently taking 30mg Carbimazole and 20mg Inderal. Did try to reduce Carbimazole to 15 mg and I went crazy hyperthyroid again.

Me!

I ended up in A+E two nights ago extremely tachycardic and with palpitations. I'm on PTU as I was pregnant when diagnosed last year and it's better than Carbimazole in pregnancy.

It's horrible isn't it? I'm here for a natter and support .

I've got hyperthyroidism, not sure if Graves (my mum has it so probably) we only picked it up recently by chance but GP started on 40mg carbimazole (and 40mg x2 propranolol as resting heart rate has doubled ) right away

recently had radionuclide scan thing and meeting endocrinologist for first time next week

the people I know who have nuked or surgically removed all or part of thyroid all seem to look and feel amazing on the replacement thyroxine which is encouraging (am not feeling amazing right now)

Its a lottery and if you have RAI or surgery, it is all going to depend on the after care.

Like all things, many, many people are absolutely fine afterwards, adequately replaced and living a perfectly normal life.

Others never regain their health, either because they are consistently under-replaced, or they are allergic to the fillers in standard levothyroxine, or the lactose in it, or they have a gene mutation that is not tested for as standard which means they cannot convert into the active hormone that the body needs. These people need medication that is available, but which GPs may not know about.

The chance you take is whether you will fall into the first group, or the second.

Also of course, Graves Disease is an auto immune disease, and removing or killing the organ it attacks, does not cure the condition. You will always have Graves Disease.

Consultants push for RAI or surgery because once youve had either of these, you are off their books. Its as simple as that.

You can take carbimazole for years and some people choose to do just that.

Make sure you have as much information as you can get before you make a decision.

Yes, me. Got my thyroid removed and have had no problems since, very happy with the decision. But obviously, that's not the solution for everybody.

My consultant didn't push it, by the way, she wanted to keep me on carbimazole and see how that works. I was diagnosed when I was 33 though and we were talking about starting a family. She suggested treatment of 1,5 years at least and then a period to see if I relapse. And I didn't like the relapse rates after carbimazole treatment.
So did some research and decided to get rid of the thyroid - as said, happy and healthy. (also, had a baby since the surgery and pregnant with second)

Properly managed you should be fine on thyroxine, there's just a few things worth knowing about it. A few other drugs/ vitamins / foods can interfere with its absorption, is the main thing.

I've recently been on too much due to a mix up with one such drug and I must say I think overactive is far worse day to day and painful.

am really sorry to hear that korma, do you think the surgery itself kicked off the other problems or possibly under treated hypothyroidism?

didn't know it was an option to stay on carbimazole longer term, thought it was just until remission or RAI if it didn't get things under control - what are the alternatives then?

Thank you all so much.

Last September I went Hypothyroid, as I had taken a little bit 'extra' carbimazole for a few weeks, in the hope I would feel better quicker, duh !! I absolutely hated being hypothyroid, seriously depressed for the first time in my life, had terrible thoughts. So the idea of removing my thyroid and feeling like that, scares me. I much prefer to be hyperT.

I feel okay'ish on the Carbimazole, the muscle and joint aches are pretty much under control. The palpitations are managed with the Inderal, Have gone back to the gym in the last few months, which did my morale loads of good, although can't seem to rebuild any of the muscle I lost. Although I have put on lots of weight since going on Carbimazole.

Endocrinologist is telling me that she doubts I will go into remission at this point as the minute we try to reduce the Carbimazole my levels begin shooting up. She says one can stay on Carbimazole long term if they are on a small dose, but not possible on the higher dose I am taking.

Korma, your experience is what worries me, I have heard so many incidents like you. I am sorry. I have excluded the possibility of having RAI, so if it comes to it, I will have a thyroidectomy.

Will try to reduce Carbimazole again, starting next week by 5mg and see what happens, Endo has said that by August I will need to get rid of Thyroid if I am unable to lower the dose. Ugh.

I will check out that thyroid UK website, thanks for the suggestion.

how much weight have you gained mkz10?

I'd lost a couple of kg of lean mass by the time I was diagnosed and replaced it with fat within just a few weeks of taking carbimazole - life is cruel

Korma, I do understand what you're saying, I'm sorry you've had this experience. I know the 'boards' well and also at one point considered requesting t3. However Levo is the successful treatment for the vast majority. For me, getting iron levels right and finding out I actually also have hypermobility syndrome has been the answer - I was tested for other conditions which are autoimmune in nature as they often co-exist. However it's 'just' this for me, and incorrect thyroid levels affect muscles either way- I get easily deconditioned. Bone density too, especially if hyper, is affected, so long term the OP is going to be at greater risk if her hyperthyroidism is not managed with the drugs she takes.

From a postnatal pov - I think it makes bf difficult / impossible with the hyper drugs, whereas Levo is fine.

My gp said 'we're not very good at managing hypothyroidism' and this is because of the range of different types and the ranges they rely on. Many are becoming better educated however, though the optimum b12, folate, ferritin and vit d hasn't quite got into mainstream yet.

It's difficult as Levo has varying half lives according to your state so you really do need to wait 2-3 months when titrating. Sadly a few years ago (2011-12) it was found that some brands are different strengths too, though this is supposed to be better controlled now.

On thyroxine, You do have to educate yourself about the right thyroid range levels for you by noting your energy, muscle strength and sleep. But for most people it's Tsh in the lower range (for me 1-0.5) and t4 in upper. My t3 is good, I do convert well. A very few don't and need t3. But t3 has a short half life and so can be chaotic.

Op- the British thyroid foundation are a good source of info and support and the BMA thyoid book by Dr Antony toft is very helpful for showing gps regarding ranges.

Poppy the fat/ lean muscle ratio will balance out. It just takes a while.

Anything thyroid takes time. It's hard to be patient. I think there's a real lack of support for the emotional side of hypothyroidism when going through a 'flare' (usually a med issue) including practical CBT style stuff similar to CFS clinic practice. Apart from anything, either way creates actual mood changes and anxiety.

I'm slowly getting better after a bad do with sertaline (lovely drug, really messed up my thyroid levels. And interesting that with boosted iron I feel the same lift that sertaline initially gave me, and I think this was my original issue) and it's just amazing how you suddenly start to feel so very well and balanced when it's just right. It's about getting the medication and your levels 'just right' for you.

The only other thing is I do wonder if stress affects levothyroxine absorption, a consultant thought it could if you're very tense / affect the digestion. So taking the pill correctly is key.

am so scared of hypothyroidism

maybe it's a devil you know type thing

I'm the same Poppy.

I'd much rather be hyper than hypo. I've reduced my dose of PTU myself due to fear of developing Hypo symptoms. Not advisable I know but I feel like I can live with my Hyper symptoms.

I know what you're saying. I've got the fear too - but I've learnt to my cost neither way is good.

With the right education and management it's good.

I just learnt that the t4 we take actually lasts a bit longer in the body than the t4 in normal people. So then I think - just get it right.

It's like a diabetic has to manage their hormones daily. Our just is a slower process - so in a way harder to detect at times but with awareness fine.

I'm too skinny and I have hypothyroidism. I get skinnier either way. The fat I do carry is indicative of me not being able to work out properly at that time. When I get going again I'm very fit.

Plus now I've got the iron thing via gp I think I'll be able to keep on top of that too.

In fact being fit really helps the thyroxine work well. It's a bit chicken an egg but with correct careful pacing doing exercise helps when levels become right. This is where the CBT side of things with many hypo patients comes in. Pacing and setting goals, very like CFS treatment.

Being hypo is not fun, but careful - the first time I was hyper, was no big deal either. Just heart rate up, losing weight and shaky hands. didn't bother me much. Second time I thought I was going to die, and it happened pretty much in the matter of days. I take hypo over that any time.

There is an alternative to carbimazole that is OK for BF

mrstweedie it's PTU (Propylthyouracil). That's what I am on. Haven't had any issues in the 8 months I've been bfing DS.

When he was born he was really small and all spotty and had a very mild case of the boogly eyes associated with Graves though . He's absolutely fine now and all big and perfect .

That's good to know and glad he's well :)

I concur with Hazel - I don't have graves but have been hyper - first time I felt like super woman and at worse had some palpitations and sweating. This time I've felt horrendous and been quite disabled.

Unfortunately there's no best treatment option for Graves. Surgery, on the one hand, means that you won't go hyper (well, unless you overdose) and for most people, the replacement therapy works fine. But as you have also seen, you could be one of the unlucky ones, for whom it doesn't.

What I've read, this is often also due to GP's, who won't listen, but only take a look at your TSH and declare that you should be feeling fine. If normal levothytox is not working, there are other options to try, but can sometimes be difficult to get them prescribed.

As for medication - sure, you will still keep the thyroid. But that also means keeping the problem. For some people, the treatment doesn't work, and even in case of successful treatment, relapse rates are about 20-40% in a year, based on different studies, 60% in 5 years and one study found relapse of 84% after pregnancy.

I would go get a second opinion, if you feel that your consultant is pushing you for a solution you're not entirely happy with.

Poppy, same here with losing lean muscle. I had been quite toned and worked out regularly, the PT did my stats (on those machines) and I had lost 4kgs of lean muscle and put on 5kgs in total, so basically I have an extra 9kgs of fat. So depressing.

:( I'm encouraged that nobody I know in real with hyper or hypothyroidism (which is often the way it ends however you get there isn't it?) is fat or miserable - not to detract from how difficult other people have found it but I have to remind myself that everyone I know is living their lives as healthily and actively as they want

Does anyone have TED?

not me but I smoke so it's a possibility- do you?