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.

the eye disease? Luckily no, escaped that.

Poppy, smoking is really bad for TED.

I thought I had escaped it but, I have early signs, one eye bulging slightly. Constant dry and scratchy eyes, blurry vision with puffy eyelids and under eye swelling. I also get a strange snapping/ stinging sensation behind my eye, waiting for an appointment with Opthalmologist and terrified I will wake up one morning and see Marty Feldman staring back at me from the mirror.

I have to admit that I was very relieved no to have the eye symptoms. Vain I know but a mental heart rate and palpitations I can deal with.

Marty Feldman eyes, not so much .

I have Graves & was diagnosed at 8yrs old. Had a partial thyroidectomy at 10 & been on levo ever since. I recently saw an endocrinologist for first time in my adult life who will monitor me throughout pregnancy.

He recommended

www.british-thyroid-association.org/info-for-patients/

& said Thyroid UK is full of quacks. In my experience there's a lot of scare mongering on there which I don't think is helpful - particularly in relation to pregnancy.

Hyper long term can lead to heart problems & poor bone density.

I can honestly say being hypo & on levo has been fine for last twenty years.

I concur again with the below post.

The BTF is the charitable side of the BTA. I think there's been a few changes recently within their board etc - possibly swinging more towards recognising some need t3 too - but over all it's a good source of info as it's well monitored by several consultants.

Again - I believe - people do not realise how very long it can take to feel better in t4, as well as some gps might not think to look at other things like ferritin. Though mine did before an endo referral, and the endo commented that 55 was a "bit low" (most wouldn't be treated till it's about 10) so I do think it's just a simple current lack of awareness/ tying up loose ends.

I think my issues over many years from aged 20 were that my thyroid was swinging a bit and degrading slowly, thus i went through phases of not being right, as well as not having access to online info and knowing I should go to the gp. I struggled for a year with severe constipation; when I finally went the gp both commented she'd preferred a better previous thyroid level (so another gp hadn't a acted on it) and that I should come to ask for a check if I felt rubbish. I trusted them a bit too much but the really need to know how you feel as they can base their adjustments on how you feel.

thanks for that encouraging post ifyouwereariver

can anyone tell me what to expect at first endo appt., anything really important I might want to ask/tell her?

It's worth asking them to go over your blood results fully. Get them to explain the relationship between T4, T3 and TSH and the levels they'd like you to be at etc etc.

It's complicated & my GP openly admits she struggles to interpret my results sometimes in terms of whether to change anything & will be led by me at times. At least if you can get to grips with what it all means you can ask for your exact levels when GP takes bloods & make informed decisions about what to do.

Also worth noting how you feel when your bloods are a certain way. My T4 had crept up a few months ago & I felt agitated & like i couldn't switch off. I was under stress at the time so could have easily blamed that but I've reduced my thyroxine a tiny amount & feel much better. A good endocrinologist will go through it all with you.

I have TED.

I have found the change to my physical appearance difficult to come to terms with.

Internet research has led me to believe selenium supplements and acetyl l-cartinine could help along with accupuncture. My consultant says there is nothing I can but I am trying it anyway. Eating gluten free seems to ease the puffiness.

Still early days for me. My sympathies if you have it.

thanks ifyouwereariver we only ever checked t4 and TSH until now (just routine because of meds am on long term) all the other thyroid function tests are new to me, but at least we know my baseline for those (and picked it up within a few months)

that sounds very hard to live with Bostin, hope the diet and supplements help - are you doing the autoimmune protocol diet? Have cut out gluten but very rarely ate it anyway, my tummy is happier without it

T3 is important to check, as this is the active hormone the body actually uses - some people have trouble converting t4 into t4, so their T4 level can be normal, but they still feel massively hypo.

so much to learn!

My husband has it. His presentation was quite 'odd' as he didn't have the typical signs like weight loss etc, but his eyeball started protruding so that's how it was picked up. He's had steroid treatment and radiotherapy at Moorfields Hospital and the local hospital started him on carbimazole, which appears to have controlled it and he's now reduced it to 5mgs every other day.

My cat has an overactive thyroid too. I'm the only one in my house with a thyroid gland which functions normally.

As said below - the best advice I had was from a BTF meeting, a sheet of paper given to them by a local consultant. This is fir hypothyroidism.

It advised making sure tests were always done in morning, I try to get a similar time. Take the thyroxine after the test (if you take in morning).
And a table to track your tsh and if done t4 results, with comment boxes on muscle strength, fatigue/ sleep and cognitive ability. For example cognitively I know if I can clear all the kitchen tops with ease, tidy a room, Hoover etc while listening to things on the radio without distractions and without having to lie down or feel like weeping, I'm ok! I noted how my bowels were when I felt at my best too.

I will google the auto immune diet you mention Poppy. I haven't heard of it.

endocrinologist didn't seem very enthusiastic about it, he said some people find it helpful but is not really something he believes in

the whole thyroid thing just seems so incredibly slow or vague, like the antibodies might mean Graves or they might not, meds sometimes help and sometimes don't

he said the only cure is RAI or surgery but we don't have to think about that for at least a year and people can stay on carbimazole if they want and it works but gave me leaflets about it anyway

I know someone who's trying the diet, I don't know her enough to quiz her, buts she's extremely into chiropractors, kinesiology(?) etc.

I do know that there's been a discovery regarding a diet for the autoimmune arthritis condition called ankylosing spondylitis, backed by consultant research. They found eating a no or low starch diet reduced a certain overgrowth of bacteria in the gut which triggered flares of the autoimmune condition. So while I've never looked at anything diet related myself regarding hashimotos (I doubt I have any thyroid left so not sure what it achieves?) I guess there could be some sort of possibility. I don't think it's been a proven thing like the AS diet.

I have Graves as well as the dreaded thyroid eye disease. I refused to have my thyroid out. I had a young DS at the time and didn't want to be radioactive for a week and then saw carbimazole managed things perfectly well with no side effects. The specialist kept on tutting over my refusal but conceded that the eye specialist thought it wasn't wise to have the thyroid out as it might exacerbate the eye condition. I was seen by both specialists for several years but was discharged to GP care as it's all completely stable. (my GP emails my results to the specialist for an opinion, might that be an option for others on this board? He's happy to concede it's difficult to interpret them).

Yes, I look a bit Feldmanish, but I've got used it and a thick fringe helps . I keep on meaning to book myself into a professional makeup session to see if I can improve the way I look, but I'm afraid of coming out looking like a drag queen. Oh well. I've been through (unrelated) first stage Paget's breast cancer in the meantime, so it puts things in perspective somewhat. All in all I feel fine a good 8 years later on 10mg a day.

so you CAN stay on carbimazole for years? Did you gain lots of weight with it?

it was pretty much the first thing he talked about, RAI and surgery, not that he was saying Do It Now but why even mention it when have barely been on meds for two months (if that)

and I don't understand the point of testing for antibodies if they don't even tell you very much

No, I didn't put on any weight to speak of. I'm maybe 3 kilos above my optimum weight, but that's more to do with liking to snack . Yes, the doctors suck their teeth about being on carbimazole for years, but they have conceded that there are no contraindications to taking it for a long time (and I suspect it helps I'm on what I believe to be a low dose, so don't take my experience as gospel), but have me have blood tests every year to make sure everything's fine (to my shame I can't remember exactly what they test for )

that is v reassuring

hopefully the carbimazole will do its thing and they won't bang on about the drastic options

Glad to hear that the BTA are finally realising that some people with hypothyroidism don't do well on thyroxine (T4) alone and might need some T3 as well. I am one of these and found the advise from Thyroid UK so helpful.

My endo was great and respected the research I did when very unwell on T4 alone. I am now on a combination of T3 and T4 and am feeling really well.

Unfortunately people who feel well on T4 alone often don't get the fact that our thyroid hormone levels are totally individual and what suits one, doesn't necessarily suit everyone.

Good luck with whatever you decide mkz10.

My overactive Thyroid was sub-totally removed . I was treated with Carbimazole initially then taken off it being in "remission". It did return, was put back on the Carbimazole and had the op 6 months later, 4 years after being diagnosed
I wish I'd had the op straight away . I now have heart problems.

After the op I needed no Thyroxine - at least I was not given any- and after the initial getting back to my normal weight my Thyroid and I had no more problems until 22 years later when I became slightly under-active but had no symptoms.

I would urge hypo patients wondering about t3/t4 therapy to get the thyroid disorders book by the BMA by Antony Toft. In two sections it points out that if you are not well at a low Tsh high t4 that t4/t3 therapy should be considered under an endo.

I recommend the book for hyper patients too and any other thyroid related thing.

Where I do think there's a missing gap though (but an endo should really look at this I think) is the checking ferritin b12, vit d and folate, which doesn't seem to be linked anywhere other than on mn and thyroid uk. I'd check and correct this before embarking on combo treatment. I met a lady at a BTF meeting who was on just t3 too. It's not as easily controlled as t4 due to the short half life.

How much / what ratio do you take marmite? I'd dithered about pushing for it it but need to address ferritin and spd/hms first. And I know I've been well on t4 before if at optimal levels.

Hi Clarella - I take 2.25 grains of Erfa a day - all in one morning dose. It took me about 18 months to get the dose right through trial and error, but I've now been on this steady dose for about 18 months. I think 2.25 grains equates to about 20mcg of T3 and 85mcg of T4.