Hello, I am coeliac and now have grave's ! my nhs endo told me there is nothing I can do apart from following his advice so continue to take carbimazole as he says... I have read so much information about the body been inflamed, and that diet and supplements can really help, does anyone here has a good experience seeing a naturopathic endocrinologist you can recommend? or any doctor who has successfully cured people with grave's? I would really appreciate your help as I am lost and scared of losing my thyroid.
Thanks very much.
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Chinasky
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The first thing to ascertain is: how were you diagnosed with Grave's. Did they test any antibodies? Specifically Grave's antibodies, TRAB or TSI? Doctors often make mistakes on that point.
Unfortunately, you can’t ‘cure’ Graves’, you can only encourage it into remission.
A hyperactive thyroid causes many of your body’s systems to speed up, which really isn’t healthy, and as things stand, the carbimazole is your best chance of achieving remission and not having to lose your thyroid.
Some people say a gluten-free diet helps, but so far as I’m aware, there has never been a proper controlled study of this. Graves’ naturally relapses and remits anyway, so someone who claims they cured their Graves’ may simply have been lucky enough to achieve remission, or possibly may never have had Graves’ in the first place. I’m not saying don’t try it (as you are coeliac, you are presumably GF anyway) but I wouldn’t abandon the carbimazole.
If you have active Graves’, one of the systems working overtime will be your digestion, so the best thing to aim for is a normally balanced and healthy diet - quite honestly, if you feel anything like I did when first diagnosed, this will be enough of a struggle.
I would be wary of ‘miracle’ supplements (some of which appear to be aiming to ‘cure’ both hypo and hyper conditions with the same pill !) Anyone with Graves’ develops a pretty good idea of the effect a haywire thyroid has throughout the body - do you really want to be throwing something not geared to your particular condition and status into the mix ?
Yes, I do have Graves'. I've been on carbimazole for around 18 months - initially my thyroid levels came down well, but then I had a relapse, so needed to go back onto a higher dose. I'm now down to 10mg/day.
The way the medics try to help you achieve remission is to get your thyroid levels back into normal range, and then keep them there using anti-thyroid treatment (usually carbimazole). Treatment typically lasts 12-18 months.
Elaine Moore's site suggests some things that may help (many of which are good for general health anyway, including getting more exercise and sunshine, avoiding aspartame...) - however, she isn't suggesting ditching carbimazole (and I'm not sure how much hard evidence there is for some of her ideas). That said, some of the things she says fit with my own experience, and that of others on this site - for example, many of us find that when we have active Graves', stress makes us feel much worse, as does being over-tired, so finding better ways of dealing with or avoiding these things is a good idea.
If you have Graves’ disease like I have .. you’ve probably suffered several different but common symptoms..the list is endless in my case ..
sweating 24/7 ,
heart palpitations , pain in joints shoulders to feet, brain fog, inability to say the words you want to .. change in voice and difficulty swallowing , breathlessness, dry skin, exhaust losing hair and toe and fingernails ..
. I think, apart from the sweating .. that fear and anxiety were the worst .
I explained it as
Going downhill in a car at 100 miles an hour and discovering that you have... no brakes 😱
My Dr said it was likely the menopause and it was “ just the way YOU are “ ..I.e... my makeup
In desperation, an appt. with a dermatologist for a sweat rash , when I was at the end of my tether, proved to be my
saving !!!
This lovely lady met me and
we ‘ clicked ‘ immediately .. after showing her my rash ... she became very interested in my situation and like a TRUE dermatologist .. started putting two and two together .. to get the whole picture .
she seemed to become annoyed when I told her my GP thought it was all down to Menopause .
She then announced ..
menopause ? ... You have a Thyroid Disease .. and I’m writing to your Doctor now to tell him that !!
I was aghast ! I could have kissed her feet , as my GP had taken bloods for Thyroid and told me I was “ normal “
I will never forget that lady Doctor ... she was brilliant 🌸
However my GP didn’t think so much of her ....he sneered at her diagnosis and said ... SHES A DERMATOLOGIST !!!
Yes ! .. a great one.
After more bloods being taken at GP surgery and them coming back positive for Graves Disease
HE then told me that I shouldn’t
Worry ...
“ You can have RAI ....RADIO ACTIVE IODINE to burn the Thyroid away ... or Thyroid surgery .. to remove it altogether
And then become simply, HYPOthyroid ...take a pill every day and you’ll be FINE !! “
THAT was enough to get me enraged and I told him that I would be keeping my Thyroid !
My Thytoud Gland has looked after my body in so many ways for all of my life but for some reason had become ‘ out of kilter ‘ ... I certainly was not going to KILL IT !!
It was my Immune System thst had gone haywire NOT My Thyroid Gland .....
I reckoned that I was running at 100miles an hour and most likely using up many vitamins , minerals and nutrients because of it .
So in my mind, I felt I had to start to replace all of the things I’d lost along my very scary journey with Graces Disease .
And do THAT by feeding my Immune System all that it needed in order to calm it down and for it to leave my precious Thyroid alone and in peace again.
I went to see an Endocrinologist at a private Hospital ...
And After taking Carbimazole for a few months .. then reducing slowly so as not to dive into HYPOthyroidism .. I managed to get to a level where everything at last , DID seem normal .. my DREADFUL symptoms began to disappear .. except the Pain 😱
But ... after a great deal of research and help on here and on one other site I managed to find the links that helped me crack that too.
That was in 2014 .. I have been in a state of Euthyroid since then ... I feel so good to get my life back again , as I was so bad before diagnosis I simply wanted to lie down and not get back up !
My Graves’ disease , I’m told will not go away and leave me cured .. but I can promise you this .. being Euthyroid most definately
Feels EXACTLY like being cured.
I keep up s strict regime if geTubg great healthy natural food which IS NOT A DIET .. simply eating the best foods I can get into me !
I take several Vital supplements every day to feed my Immune System and my Thyroid Gland seems to love me for doing so .. as it never gives me one bit of bother ..and that’s been 4 1/2 years now !
Do take it from me ... and others here too .. it CAN be done fo nit listen to negative opinions
It’s your body ! Only yours !
Be brave , learn everything about your disease, your
Thyroid Gland🦋 ....AND your immune system and GO for IT !!
Brilliant ! This is the kind of stories I am looking for to copy! I congratulate you for overcoming your symptoms and take ownership of your health ! Now, what type of food do you refer to? And what supplements are you on? Just to compare with other cases I have read. Thanks 🙏 big hug!
As you have two autoimmune conditions already, addressing diet would be sensible, to try to stop you getting more. I needed to be grain free not just gluten free (and dairy free). Have a look at 'Autoimmune Fix' by Tom O'Bryan - ideally we would have read it (and so would our doctors!) before we actually developed diagnosable conditions, but there is still plenty that we can do to help ourselves (along with the medication where appropriate). Good luck.
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