Thyroid UK
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Hyperthyroidism caused by Graves

Hello, I'm only now getting round to introduce myself. I was diagnosed with Hyperthyroidism caused by Graves disease late 2015. I'm on Carbimazole and having frequent blood tests done to monitor my levels. My consultant would like to take me off the medication at the end of the year and has suggested the Iodine treatment if my levels don't stabilize on their own. He says because of my age he doesn't recommend long term Carbimazole useage. This isn't something I really want to do so I'm looking into alternatives and lifestyle changes that can control my thyroid levels with minimal or no medication. Anyone else been here or going through this?

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Hi Hannah, yes I am also on carb and avoiding anything else. You don't jave to answer if you don't want to but - what age are you? What age does the consultant consider inappropriate for carb use? I would imagine it's probably bullshit. They say all sorts of shite to get people to do the RAI or thyroid surgery. Did he tell you there is research happening right now to find a cure? There are ways to address the immune part and hopefully reduce the autoimmunity although i believe it's very individual and gradual. Check out elaine moore she has written about this a lot on her website and looks at immunomodulators that support the immune system while reducing autoimmunity.

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Thanks for replying.

I'm 35, my consultant basically said I was too young for long term use of Carb as they don't know the effects it can have on the body, he recommended RAI if my thyroid function didn't normalise once off the meds next January. It did feel at the time he was fobbing me off!

I suppose I was niave last year in thinking it would just get better but he never once explained what Graves is (I found out by doing my own research) . His focuses is on the thyroid, not on the cause of it not functioning properly!

I'm on a low dose of 10mg daily so not high compaired to a lot of people. I'm just at a point now where if I can make changes myself I want too :) x

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Yeah he's talking through his ass. He doesn't explain cos he probably doesn't know. None of my endocrinologists have ever had even a rudimentary understanding of the graves autoimmunity, they always treat it like a thyroiditis, which it is not.

RAI jas serious long term impacts including potential stomach/bowel cancer, which considering they are asking us to swallow radiation is unsurprising. But it's convenient for them cos then they just give you enough levo to get the numbers of ft4 up n then ignore you if you tell them its not treating your symptoms. It's criminal imho.

Honestly go to Elaine Moores website. She's a real expert and gives lots of options to try to treat the autoimmunity. I'm currently avoiding all excess iodine, taking extra vegetables and a supplement n mineral combination as well as practicing mindfulness to reduce the stress component.

Also check out apitope its just one of the places working on a cure

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Thank you, you've been a great help. I had to chase him for my last blood results as they didn't bother sending them too me. His secretary told me my bloods were 'normal' I took great pleasure in telling her normal would be great if I wasn't taking medication and asked her to read the results out to me so I can keep a record of them! It's ridiculous honestly!! There is no way in hell I'm taking the RAI or having my thyroid removed! It's just not an option!!

I'll check out Elaine Moores website :-) x

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Oh Wow !

A girl after my own heart !!

Nice little chat going on there and encouragement from Cat !😻

Hannah !

You are just sooo right !

RAI and SURGERY ARE

THE NO NOs At YOUR age

In fact , at any age !

Unless of course it's someone suffering from thyroid cancer in which case it's necessary.

I was diagnosed with Graves' disease almost 2 years ago now !

And believe me ... I don't think there was a symptom I DIDNT HAVE ...

....Anxiety

Fearfulness ( terror actually )

Emotional

Severe muscle pain in all limbs

Hand tremors

Throat vibrating .... hoarse voice

Diarrhea

Frequent urinating

Dreadful thirst

Unable to sleep !!

Twitching

Brain fog ( not being able to find words or finish sentences )

Hair falling out on head

No body hair

No eyebrows

Profusely sweating Day and night

Toenails falling out

Scaley skin on legs

Dry itchy skin

Itchy dry eyes

... and probably a few more ..

I guess you could say I was running at a hundred miles an hour .. and my poor body ( and mind ) was wrecked

My doctor knew NOTHING about The Thyroid Gland he told me for years ... I was fine

He was most embarrassed when I went privately to a lovely lady Dermatologist because of the effects that the awful sweats were having on my skin !

She was adorable .. and said

wow ! Your skin is so damp .. we need to find out why ?

She then asked what my GP had said it was ... I said he just said it was just ' my makeup '

She snorted .. and said .. Is that right ?

You have a Thyroid disease !!!!!

And I'm going to write to him now to tell him so ..

So , When I went back to GP he most reluctantly and with a snear

Said Huh ! Fine , I'll do you're bloods !

Next day he phoned for me to see him !

He told me I had Graves' disease

He said .. I can hardly believe it !

..... I could have decked him !

Then he said Oh don't worry .. we'll just give you RAI and it'll be fine ... if that doesn't work .. surgery !!

I asked ....if it's auto immune ... wouldn't I be better addressing and treating my immune

system ???

He said ... Oh No ! That's much too complicated

....that was the day I decided to Self Medicate !

I did however take Carbimazole

( 20mg per day ... down to 10mg after a month or so ... then down to 5 MG ) For a few months .. to bring the Whole thing down ..

And once I got to where Endo was pleased with my numbers I still felt 'high ' but he insisted I stop the Carb !

However I didn't feel I was Euthyroid or Normal yet

As it takes a while to calm Down I now know .

Anyway the long and the short of it is ...

I started on a regime of feeding and calming my Immune System down by giving it back what my ravaged body had been robbed of by my I. S. attacking my Poor Thyroid and making it overwork to Extreme !

Individual Supplements

NOT A COMBINED MULTIVITAMIN !

It took a while for my symptoms

To stop altogether ...A few months ... the muscle pain was the last to go !

And Thank God .. I'm now Euthyroid .. in remission and I'm planning on staying that way

By continuing with my regime ..

Obviously using less over time .

ELAINE Moore is a great woman and on her website you will find great help ..

if you are interested in the

Route I took , of

Vitamins

Minerals

And nutrients

Just ask !

Best of luck Luvvie x🌹

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Thank you too for replying to my message.

I'd love to know which vitamin/minerals/Nutrients you are taking. I'm taking a few supplements but am pretty sure not as many as I could benefit from! 😊

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Hi Luvvie

First , tell me what you're taking

And I can tell if I think they'd be of benefit

My Endo

Put me on 20mg in the beginning

Saying it was much easier this way as it would have a quick result ..

And he was correct

I've noticed people who start at 5mg or 10mg Don't seem to get

A good result as quickly as I and others have achieved

Mx🌹

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I have decreased to 10mg Carb from 20mg and have staying like this since April.

I take Selenium, B vitamin complex and vitamin C with Rose hips x

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Of Carbimazole ..

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Ok ...

I am not a doctor It must be said

...But I now , definately know more about minerals vitamins and nutrients in the treatment if Graves Disease .. than my own and some Doctirs .

It took me a long time to research all of this ..

I have a Canadian friend who is lucky enough to have worked in a medical environment and has access to lots of scientific minded and skilled doctors ..

She questioned them on something Called ..

Regular L . Carnitine

There has been much research in this ..

I would like you to Google it !

There is another Carnitine .. which has a more intense effect on Graves' disease It called

ACETYL L Carnitine

Google that too Hannah ..

You can then decide if one of them might suit you

I asked my dr about it .. he said he didn't know what it was

" never heard of it ! " he said

Apparently it's in all of our bodies

But when running at a hundred miles an hour it gets used up

And is necesaary for muscle function to replace it !

So that's no 1

But equally important is ..

vitamin B12

( must be sublingual ) is taken and melted under the tongue ) ...... high dose

MAGNESIUM ( high dose Magnesium Glycinate I take

B6 For energy

B1

B Complex ( Best quality )

Vitamin C High dose

Vitamin D3 High dose softgels

Must be taken with K2 mk7

Zinc and copper

SELENIUM HIGH DOSE Capsules

For Thyroid health

COQ 10 Quality

ACIDOPHILUS I take 40 BILLION / Day

80% of iur immune system is in our Gut so that's where the work should be started to make it well

Again ...

I get all my things online in one place

I'll pm you if you like , to say where

What do you think of it all then ?

Mx🌹

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It would be a great idea .. if you could Google each of the above supplements one by one

In this way

to get the correct info ..

I.e. google

Magnesium / Thyroid disease

Or

Magnesium / Graves' disease

Mx🌹

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... also

Get a print out of your last Blood results ... they belong to you and they are obliged to give them to you !!

And print the numbers on this

Board ... including those in brackets as those are the ranges of your Lab

...maybe under a different heading to get others interested in replying ..

And you will get great help in

What you should do next !

Mx🌹

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That's a lot of supplements but if it makes a difference it's all worth it :)

I'll certainly look up each one and go from there.

I have got copies of my bloods so will put those under a new thread xx

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I know it's a lot ...

But those are the things that make up OUR Immune Systems

And THAT IS WHY it's sooo good at fighting infections within your body !

Because all of those things HEAL the body .

It does seem a lot and financially too .. but for the price of a good night out with dinner

You can stock your medicine cabinet with GOOD HEALTH

... and that's much better than a night out !

I did not KNOW if I could do this at the

End of 2015

I didn't know if it was possible !

But it WORKED

And it worked quickly and well

You might want to discuss it with your dr .

likely won't know what your aim is never mind what it's all about

But if you feel more secure

You should absolutely discuss self medicating with supplements

With him

Best luck

Mx🌹

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