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.

oh why does it take so long to sort out thyroid problems

watching marathon, having a cry :(

It's a *ucker poppy.

I found pintrest a very good way to collect all the ideas of what I was going to do when better. Imo there's a very certain type of cbt style thinking needed which bridges cfs approaches and basic anxiety to deal with thyroid stuff. It is also quite an invisible disease, which I personally found quite traumatic to experience as a young student - part of the trauma was dealing with drs and being heard.

Thanks marmite. Is it a 'named patient' thing? How does gp support it?

My understanding was the dessicated stuff had a higher ratio of t3? (Than what we need) is it slow release?

Yes my GP prescribes it on a named patient basis.

I have read that the proportion of T3 is higher but my blood test results look good (apart from TSH which is suppressed / thankfully endo ok with this). I think my ft4 is usually low in range at 16 (12-22) and ft3 is 5 (3.1-6.8). I feel really well with these levels

I love that Pinterest idea Clarella, I might make a short, medium and long term board - more helpful than my self pity.

how are things mkz?

can anyone explain in really idiot proof terms what the different antibodies mean?

I found pintrest helpful when at my most exhausted/ frustrated.

Antibodies - I'm not sure from hyper pov. Basically autoimmune indicator so body is attacking it's self. I think autoimmune diseases fox even the experts.

There's a lot in that Toft book, including "choosing which treatment is right for you". It seems there's different courses the disease can go. Too much info really to post here.

ok, I finally got the kindle edition and will actually read it

am definitely feeling better but is impossible to know whether you're someone who will do better without their thyroid or someone who can feel ok on meds/enjoy remission or whatever

Glancing at the toft book - there's a graph showing different courses of the disease. I can't comment on your situation and am less knowledgeable about hyper / graves but it looks like it can be unpredictable?

The "choosing which treatment is right" bit might help you decide a little/ feel more confident about a path forward.

I think the hardest thing is there's a weird thing with hyper and hypo where you can't imagine feeling better and therefore planning future things is difficult as you only know how you feel right then- does that make sense?!

yeah endo said impossible to predict (hasn't confirmed it is Graves tho) and this book seems to say the same - might as well get my head round that and take it day by day

am desperately hopeful last lot of bloods show that carbimazole is working, I can log on to view most of my test results but they are slow to update

yes that makes total sense, just have to make best of the here and now I think and be flexible about any future plans or goals

Wow that's good! The logging on bit.

I'm actually writing myself a kind of personal CBT plan regarding hypo symptoms along side my hypermobility issues which have come to light post pregnancy. When well I like to forget I was ever ill and it creeps up without me realising.

A bipolar friend said it was like a kind of document she has for herself to focus on various symptoms.

Within it im listing flare plan s for physical and also the emotional side - quick fixes for both while the long term things can be waited for/ addressed. Technically I shouldn't really ever have hypo symptoms again now I know so much about the wider picture but It's still worth being mindful of my well parameters.

You might find the chart I got ages ago helpful for right now - I'll post later, toddler waking

I'm going to call it "the hitchhikers guide to hypothyroidism" and the first line will be "don't panic!"

that sounds cool! Does put me in mind of relapse signatures for bipolar a bit too

it's a therapeutic drug monitoring system so unfortunately I can only see stuff relevant to lithium (so mainly kidney and thyroid function tests, serum lithium levels) although we have been checking loads of other things lately - cholesterol and various stuff - which might be useful to know about

but it does mean we have over a decade of results of what is normal TSH and T4 for me and what to aim for now I guess?

I 'probably' have Graves. Which is hilarious, given that my hyper started 3 years ago! No goitre or TED. Initially thought to be postnatal related, but never calmed down.
The trouble with thyroid issues is that they almost always cause mental health issues, which is generally denied by GPs and Endos.
My throid came out a month ago. Feel like crap - could sleep all day. I was better when I was hyper, because I had learned to live with it (along with carbimazole, propranolol and Prozac).
I guess things may improve when my dosage of levothyroxine is managed better. I have spent £200 on supplements, and am a member of many of the FB support groups. That is very helpful.
Oh, and the 'probably' Graves thing is actually on an official letter from my Endo. They found no antibodies, but can't think of another reason.
It's infuriating. The only reason my throid came out was because 'I could die otherwise' as carbimazole is very hard on the liver.
Crappy disease.

I concur mrsjuice. We get told 'you can get depressed, anxious, low mood etc' but as it's assumed 'you'll be ok soon' There's no specific coping advice and ime the mh effects/ experiences can linger. Esp if hashi or graves wavers a lot. Since I've had a diagnosis of hypermobility too ive had access to physios who've pointed me in the direction of CFS style types of approaches in CBT which I've found really helpful. There's quite a cross over.

the mh type symptoms were so similar to some bipolar stuff that we just put my lithium up and nobody suspected anything else - it was only routine thyroid function tests that alerted us

I still wouldn't know there was anything physically wrong, which makes it harder to accept

have to say endo, psych and GP all brilliant so far at acknowledging how destabilising mentally and emotionally the whole thing has been - am sorry if other people haven't had that validation or support. I guess it's because long history of pre-existing problems in my case?

I guess so poppy - though imo the opinion that hyper is more impacting on mh seems prevalent in literature but less so for hypo - oddly!!! I think I can explain it through the fact that if hypo and leading the life of luxury with no responsibilities you'd 'just' be tired and not up to much. And rather dopey. Having to function with lots of pressure from work and home is not only physically impossible but needs mental facilities which don't exist when hypo. It's a mild dementia. So you get very anxious, stressed and down.

I've a friend on lithium who's just started looking at if its triggering the hypo - but finding it much harder to get both dx and the help. Hypo is more of a grey area.

am still v scared of hypothyroidism but endo says is not inevitable even after RAI or surgery

isn't diagnosis confirmed through the same tests but with elevated TSH instead of none and low T4 instead of high? lithium is well known for doing things to the thyroid (it possibly stopped my uptake scan from working grrrr) so they should be checking it at least once a year? Hope she gets some answers soon

Yes - she's in that grey area of hovering below borderline, but with clear symptoms, though it goes back down again. The main issue is she had a missed miscarriage and had almost hypo test results (v low t4 too) two weeks after.

From research it seems lithium can both do something to the way t3 and t4 are produced as well as triggering hashimotos. In the first the patient would be fine off lithium in the second not. Also pregnancy can trigger thyroid issues, and thyroid issues can cause miscarriage. It's a bit of a muddle - though solved if gps are helpful to try to work out what's going on. Probably checking antibodies is right way forward.

Technically the process is the same as any patient, but as brief glance at mn boards shows this is difficult too! Many spend a long time being monitored or getting nowhere trying to persuade GPs to test for antibodies.