Hi was diagnosed with Graves disease last week ... - Thyroid UK

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Hi was diagnosed with Graves disease last week and was wondering if anyone knows over what sort of time period this usually takes to develop

9 Replies

Thanks in advance. Any tips for explaining to family and friends what Graves is because as soon as I mention autoimmune they tend to shut off! Why bother asking whats that then ig they dont want to listen to my reply

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9 Replies
LouiseRoberts profile image
LouiseRoberts

Hi

Can you confirm your latest thyroid blood results with the ranges please.

Also, what treatment have been put on?

Everyone is very different, I'm afraid, so I don't think anyone will be able to give you time-scales.

Are you under an Endo? What info have you been given so far?

Info here which might help...

thyroiduk.org.uk/tuk/about_...

L

x

Joyia profile image
Joyia

Sadly that can be a typical response from family and friends which is why this website is so valuable, you are never alone here.

As for Graves, I developed the condition after I gave birth to my daughter, although this was 48 years ago! There was much ignorance about in those days including myself, personally I blame my condition on taking the birth pill which was very high in estrogen and progesterone when it first came onto the market, my baby was 3 months old, that moment on I went downhill but was not given a firm diagnosis until over a year later by which time I felt very ill but struggled on with little understanding from those around me. More recently I have learned from this site that Graves can occur after the birth of a child and somebody more knowledgeable here will be able to explain why. Of course this is only one reason, there are many others including severe stress affecting the OAT axis (ovaries/adrenals/thyroid).

As for family and friends, all these years later not a lot has changed in my experience, it can be ignored, trivialised or treated with sighs of boredom unless you are very fortunate to have a good support network, once again I reiterate why this website is so valuable, it makes a huge difference when folk here say ah hah I know what you mean.....

Best wishes

in reply to Joyia

Thanks for your reply joyia yes this site is a great help.I am 56 so wondering if mine could have been brought on by the menopause.I started with symptoms about 2 years ago but put it all down to that, No sadly I dont have a good support network I am the one who looks after everyone else! Sometimes it id difficult though I am feeling bit better now I have started treatment and my levels are balancing out.Can I ask if you are taking medication or had other treatments? Take care......kim

Joyia profile image
Joyia in reply to

Hi Kim, I had a partial thyroidectomy in 1967 and had no treatment whatsoever for my thyroid after that until 1995 when it was discovered I was hypo and placed on T4 thyroxine. Quite shocking when you realise that none of my Doctors in that time made any relation to other complaints I had with my thyroid and as said before my own ignorance. I am ok on T4 only but do suffer from joint pains and fibromyalgia. After a lot of hoo ha I managed to see an Endo this year, my first visit to one since 1967, I asked for a trial of T3 along with my T4 as it has been said on this website by others to help with joint pains, sadly it was not to be for me as I didn't feel very well when on the trial and also developed suspected angina like pains. But we are all different.

You suspect the menopause has caused your thyroid condition and you are probably right, there are strong links with our hormone health. An interesting read is Dr Campbell McBride's Gut and Psychology, she is an expert on gut health and the ongoing effects on our well-being, one thing leading to another. There is much we can do to help ourselves, healing the gut is one of them.

Best wishes

Joyia

Midwinter profile image
Midwinter

I agree about people shutting off! People don't understand autoimmune disease, and there's less awareness of Graves than, say, RA. Hard to explain to employers, too. Not much help, but now I just opt for, "it's really quite complicated. Even the doctors don't really understand how it works" - and point them to the Wikipedia article, which is really quite good.

I think Louise is right, some people develop Graves quite suddenly; others more gradually. I was diagnosed when I developed overt eye disease in my early 40s. Interestingly this followed on from a diagnosis of a mental & physical breakdown after 18 months of intense personal upset (I think there's another recent post on mental health ...) The GP didn't do thyroid tests at that point, and it seems likely to me that this "breakdown" with panic attacks was the start of overt Graves - the symptoms were so very similar, it's impossible for me to say when one stopped and the other began.

Having said that, I'm convinced I've had Graves since late teens/early adulthood: all the classic symptoms of shaking, weakness, nerves, heat intolerance, which would become much worse on a monthly basis (to the extent that I'd know to expect two weeks in the month when I'd be losing weight rapidly); plus there are photos from my early 20s that show changes to my right eye, 2 decades prior to getting a diagnosis of TED. So I think it's very possible that for some people the onset can be gradual, or with a remitting pattern that's more recognized in other types of autoimmune disease, eg, RA.

Midwinter profile image
Midwinter in reply to Midwinter

... I've just realized that that might not have been what you meant by "time taken to develop"! What I should have also said, is that carbimazole worked very quickly for me, and I did actually achieve remission the first time around.

in reply to Midwinter

Hi midwinter thanks for replying.I did mean how it comes on.I have startef on 40mg of carbimazole and 100 thyroxine daily.How long have you been in remission? I certainly felt as if I was loosing the plot before treatment and was put on antidepressants was the Graves all along.I became anxious , couldn't sleep, palpitations etc.My personality changed and I have had eye problems. The sweating was uncontrollable and I just felt I wanted to run away.Nobody noticed any of this unbelievably. I then did go I bookedmmyself into a barn in the middle of nowhere and spent a week alone and did lots of thinking I came back and saw my GP and he got the lot.Tests were done which showed I was severely hyperthyroid and further tests diagnosed Graves.I feel I was dismissed as a menopausal hypochondriac up till that point.My daughter was diagnosed with autoimmune arthritis agin her early twenties so think could be a family connection. Well hopefully I will go into remission too! Best wishes......kim

Joyia profile image
Joyia

Having been to fibromyalgia support groups, (some believe there is a strong connection with the thyroid) and listening to peoples stories, it is not surprising how many have had serious issues in their lives creating a good deal of stress. Learning how to cope with what life throws at us is an important part of well-being, trouble is we often do not know what to do in certain situations and our minds become troubled, this has a knock on effect and our bodies react with ill-health.

Mindfulness is consistently of late coming into the public eye, although it is an ancient practice. The House of Lords/NHS/Oxford Uni are offering courses and many of our schools are taking a great deal of interest in the subject as it helps pupils for be calm and focused. After following many different paths, personally I have found the practice of Mindfulness meditation to be the most helpful for dealing with stress. We have to find answers from different angles but never undermining the importance of our mental wellbeing.

I love the idea of taking oneself off to a barn for a week, what a splendid idea and very "Mindful" !

in reply to Joyia

Hi joyia thankyou for your reply.Its good to learn of and from other sufferers experiences. I will have to look into mindfulness and I am going to make my holiday to the barn an annual treat! It has been suggested in the past by a GP that fibromyalgia could explain some of my symptoms but now I am starting to feel better with treatment for overactive thyroid I am now wondering if its been the problem all along.I will have to wait and see.Thankyou again for taking the time to rep6 and best wishes .....kim

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