New to the group :-) Graves Disease sufferer - Thyroid UK

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New to the group :-) Graves Disease sufferer

Granitecitygirl profile image
5 Replies

Hi folks, I've been reading through the group and picking up bits & pieces of information as I have found my endocrinologists to be lacking in conversation :-) You all seem to know your stuff! I was more pleased to find out that thyroid patients can't be pigeonholed, no matter how much the Docs try to do it. One GP told me to stop eating as I was fat. Erm, yes I have come to you because I have put on weight when trying to shift it. You are supposed to find out why I am putting on weight. DUH!

To get to my question: How long can Graves reasonably go under the radar? I and my medical records can testify to muscle & joint pain from puberty, various degrees of severity. Put down to rheumatic etc. Since being on Carbimazole for 9 months, no pain. No discomfort. I have been in discomfort for so many years that I forgot what it was like not to be in discomfort. My only discomfort these days is due to being a little portly.

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Granitecitygirl
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5 Replies
joprince profile image
joprince

My Graves went under the radar since 2005 when I had a half my thyroid removed. When I got double vision 18 months ago they said oh yes we knew you had antibodies in 2005. I then eventually had second half thyroid removed last June. Still have double vision though. And to think the endo I was sent to said there was nothing wrong with my thyroid and that I was just an anxious depressive before I had hardly sat down. Going now by symptoms I think I had Graves since 1972. Of course I was labelled everything else.

Granitecitygirl profile image
Granitecitygirl

Hi, sorry for all the trouble you have gone through, but I am glad not to be alone. One of the Endos told me that I had only had the condition for 1 year, no longer. He would not listen that I have had symptoms of something being badly "off" since puberty, and even before (almost 20 years). I ate like a horse, was a reed until I got boobs, periods that were horrific and gave no warning when they would strike me down (could go 6 months without then BANG, period for weeks). And mood swings, don't get me started. But I know that I and my family had an awful lot of stress going on at the time, medical issues were the least of our worries.

Having read through a few other peoples questions and blog posts, I feel as though I have had an easy run of it :-s

hotfeet profile image
hotfeet

i was diagnosed with graves in feb 2012 and prior to that did nt think i d had any problems

looking back after my girls were born i lost eyebrow hair gained weight felt knackered put it down to having small children

i ve prog had problems for a while before a virus sent me spiralling into hyper mode

i too gained weight after the initial loss and am struggling now to lose a lb a week!

not every hyper is stick thin quite the opposite since being on meds i ve gained all the 9lb i lost and added another 5 to it!

slowly losing it with strict diet and exercise but its a long slog

good luck

hope you feel better soon

hotfeet

greenginger profile image
greenginger

I was diagnosed in 2011 with Graves but had been having problems for years before. The bloods always came back as borderline. I had my children in 2003 2008 and 2009 and had miscarriages between and preclampsia ( all which can be indicative of thyroid problems)with all 3 kids.

I thought I was going mad in 2007 and finished my career as I could not cope and had hot sweats all that year. My endo now thinks that I have been hyper on and off for up to 10 years.

Plus I have always been a horrible sleeper and had very limited reserves of energy plus other issues which in hindsight could be linked. Plus nobody got as many colds as I did.

Plus Hashis runs in the family.

Granitecitygirl profile image
Granitecitygirl

Hi folks, thank you all for sharing. The more I think about it the more I can trace Graves back through my whole life. My mum has said it too.

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