Graves Disease problems: Hi...I am new on here... - Thyroid UK

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Graves Disease problems

Candus58
Candus58
7 Replies

Hi...I am new on here. I was diagnosed with Graves Disease about 10 years ago. They believed I had actually had it for about 4 to 5 years prior to being diagnosed because my symptoms were severe. I had radioactive iodine treatment done which my endocrinologist was confident my thyroid was destroyed. Six months later my body was still full of thyroid hormone but I was starting to develop the emotional symptoms again like anger, paranoia, etc.. My doctor decided to start me on levothyroxine anyway. A couple months later my thyroid my doctor noticed she could feel my thyroid again. It had started to grow back. Testing showed it was producing hormone but it has been erratic every since. Also, the Graves Disease threw me into menopause. I have been suffering from severe depression, anxiety, ever since the Graves Disease and nothing has stopped it. I don't want to have my thyroid surgically removed nor do I want to do the radioactive iodine again. I was wondering if there is anyone else that has dealt with something similar?

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Valarian

Hi Candus58, and welcome !

Did I get this right... your thyroid tests we’re still showing high thyroid levels (do you have access to the test results), but a doctor (an endo or your GP?) prescribed levo anyway ?

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Fruitandnutcase

I thought that was pretty weird too.

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FixHealthNow

Hi. Do you have silver fillings, have you had vaccinations like flue jab etc or any other vaccinations. If so list them here. Please also show us results for thyroid test someone can have a look.

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pennyannie

Hello Candus

Graves is an autoimmune disease and as such it is for life, it is in your blood, your DNA.

There is probably some genetic predisposition, probable a generation away, and it can be triggered by a sudden shock, like a death or maybe a car accident.

I too have Graves Disease diagnosed in 2003 and had RAI thyroid ablation in 2005.

I became very unwell about five years ago, but, now, thanks to this site and reading up about my condition, I'm now getting my life back.

In the first instance please post on here your thyroid blood tests results so people better able than me can give a considered, unemotional opinion.

It is important to include the ranges that your results were in, plus the medication you were taking at the time.

You are entitled to all of your blood test results and it is also very important that you also find your original results confirming the diagnosis of Graves Disease showing the positive blood test for the TSI / TRab antibodies.

I know this must be a very difficult time for you, what medication are you on now ?

If production was said to be erratic, were you put on any medication to control this ?

I think I was started on Levothyroxine almost immediately after my thyroid ablation - becoming hypothyroid quite quickly.

There are a couple of books that helped me understand my situation better, I found absolutely no help or advice within the National Health system.

Elaine Moore - Graves Disease a Practical Guide - this lady has the disease and also had RAI - there is also a very comprehensive website - USA based - which is open to all Graves Disease patients -

Barbara S Lougheed - Tired Thyroid - from hyper to hypo to healing - another American author detailing her journey with Graves and through RAI treatment -

The third book is by a doctor with hypothyroidism - it is an easier read and makes common sense :

Dr Barry Durrant Peatfield - Your Thyroid and How To Keep It Healthy -

Our thyroids have been burnt out, we need to make up for having lost this major gland which was responsible for our whole body's smooth running and synchronicity.

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PGirl12

Thank you pennyannie for the info. I too was diagnosed with Graves about a year ago. On Tapazol since, now T4 and T3 are normal, but TSH remains very low close to undetectable. Still trying to correct TSH, any suggestions anyone?

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Valarian
Valarian
in reply to PGirl12

It can take a long time for TSH to bounce back from Graves’ - and apparently sometimes it never does. How much Tapazole are you on currently, and what are your current FT3/FT4 levels and ranges ?

I assume from the ref to tapazole that you aren’t in the U.K. (so rules about access to records may not apply to you ). Do you know what your thyroid levels were on first diagnosis (also reference ranges), and did you have TRAb or TSI antibody tests ?

Sorry for all the questions - but the more info you give us, the more likely it is we will be able to give you info in return :)

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pennyannie
pennyannie
in reply to PGirl12

Hello PGirl

To have a diagnosis of Graves disease you will be positive for the TSI / TRab antibodies.

The uniqueness of the TSI antibody is that it "sits on " the TSH thereby controlling and continually stimulating the thyroid to over produce T4. This is the reason why you went overactive in the first place as these antibodies are attacking your thyroid.

Your TSH may stay low or undetectable for ever - you have Graves Disease.

Your thyroid is the victim in all this and not the cause.

The cause of your illness is your body attacking itself - and since the thyroid is such an important, major gland, when it's goes a bit " haywire " and is being attacked the symptoms caused can be seen as life threatening.

Imagine a water boiler that doesn't cut out when it reaches the required temperature.

Your body clock has probably been running very fast, and may now even have been slowed down too much - as your metabolism has been unstable.

it is essential that you keep as strong and as well as possible during this time, andit would be wise to get your vitamins and minerals tested as detailed on this website.

As to how to control the antibodies that are causing the problem

There maybe some diet and life style changes to be considered.

Graves thrives on stress and anxiety - work / life / " your time " ?

Hopefully you will be able to continue with the anti thyroid medication options.

The removal of the thyroid comes with it's own set of problems, and it is quite simplistic to suggest it's easier to manage hypothyroidism rather than manage hyperthyroidism.

Either way, you still have an autoimmune disease called Graves Disease, that can wax and wane, with no two people showing the same set of symptoms which does, therefore, I suppose, makes it a challenge to understand, identify and treat in mainstream medical practise.

I read Graves Disease is poorly understood, affecting approximately a quarter of 1% of the population, so would suggest you read up and educate yourself, as you will probably be your own best advocate and need to take an active roll in understanding your body.

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