Told To Have Rai But Dont Want To - Personal Stories - Living with Graves Disease

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Told To Have Rai But Dont Want To


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#1 chrisharry

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Posted 08 January 2012 - 12:30 PM

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I am a 44 year old male diagnosed with graves disease 19 months ago.
I have never been ill before and live a fairly active lifestyle, however 3 years ago whilst on holiday in spain the overactive thyroid started playing its hand.
Buying two pints at the poolside bar, my hands started shaking that much the glasses where half empty by the time I got to the table, to much sun I thought!
It got that bad I had to send my partner to the bar , even thinking about going to the bar made me feel shaky.

 

Back home and back to work as an electrician my fellow workers would comment on my shaky hands, then people would start saying your losing weight.
I went from 12 to 9 stone and forever felt nervous, time to visit the doctor.

 

The doctor diagnosed overactive thyroid and referred me to the local thyroid clinic.

 

They started me on 40mg Carbimazole and after 2 months went back to normal, then I began feeling tired and sluggish and my weight went up to 13 stone, I had gone underactive,after getting my bloods done every 6 weeks I eventually settled on 20mg.
The clinic asked if I would like surgery or RAI, I dont fancy surgery so I said RAI.

 

After looking on the internet and learning how the thyroid works and what it does and learning about how RAI works I dont want either of these.

 


At my last appointment at the clinic in early December they stopped my Carbimazole treatment as I had been on it 18 months, then they started pushing for the RAI treatment.Whilst I had been looking on the internet I found a list of top reasons not to have RAI, so I printed this off.I gave this to my consultant and she basically dismissed it and said RAI is safe and that its easier me being underactive and using thyroxine.

 

At the present day I feel great, now been off carbimazole for 4 weeks and due back at the clinic on the 7th February, no doubt if I show signs of overactivity they will push RAI at which point I will say NO , But will they strike me off all treatment rather then put me on carbimazole?

 

At the moment I think slowly killing your thyroid cells with RAI is not the answer because I will feel a lot worse underactive and replacing your thyroid with thyroxine a synthetic drug which does not produce all the stuff your thyroid does will never make you feel well.

 

The fact is I always think I have always been on the overactive side of things because I've never been able to sit down and do nothing.I would hate to be underactive and feel sluggish, without my thyroid I would loose my health rapidly.

 

In the mean time I have started taking vitamin tablets because I know I have a strong immune system never get colds etc but may need to boost it up and maybe the immune system will return back to normal and stop over stimulating my thyroid, wishful thinking.

 

I will repost after my next visit to the clinic, thanks to all the others posting it makes interesting reading from Chris




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#2 mmztcass

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Posted 08 January 2012 - 06:59 PM

Hi:

 

You might want to repost under the forum topics at the Graves' Disease and Thyroid Discussion. This section is for people sharing successful thyroid stories on how they overcame or managed their Graves' Disease.

 

{{{hugs}}} ;)



#3 mmztcass

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Posted 08 January 2012 - 08:19 PM

I am sorry you were diagnosed with GD, but you are in the right place here.

 

I am 8+ years on a tiny dose of ATD. I take Methimazole (MMI).

 

Your doctor(s) cannot refuse your request if you don't want an RAI. I would find another one who will continue prescribing the CBZ (Carbimazole) for you so you can continue taking these in low doses to keep you stabled. Thyroid antibodies will be active for awhile or perhaps forever.

 

Make sure the vitamins you take do not contain any Iodine as it will rev up the thyroid and keep the Graves' Disease active.

 

Check out the Thyroid 101 to what you can safely eat/drink as well as the 'safe' vitamins/supplements to take.

 

{{{hugs}}} :)



#4 Christine

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Posted 08 January 2012 - 09:13 PM

Hi Chris -

 

See my post under Graves' Discussion about the longterm antithyroid drugs. Take those to your doctor and watch him try to dismiss those! You have the right to refuse any treatment you do not want. If he's impossible to work with, then as Linda said, find another one who will work WITH you not AGAINST you.

 

As you can see by my signature/profile, I've been on Tapazole, an antithyroid drug here in the States, for almost 33 years now, and things are going fine -

 

Chris



#5 Misty

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Posted 11 January 2012 - 06:40 AM

Hi Chris,

 

Another reason you may want to refuse RAI is that even here in the US, where it was the treatment of choice until recently, it's understood (according to our medical expert Elaine Moore) that men have such dense neck tissue that the radiation doesn't penetrate properly and results in a relapse, having simply made the antibody production worse without destroying the thyroid.

 

Remission with an intact thyroid gland is possible for most of us. Ive been in remission for six years now...

 

Best wishes,
Yvonne,
PTU 2002-2005, remission since then, antibody-free since 2009



#6 chrisharry

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Posted 12 January 2012 - 04:25 PM

Hello,

 

Thanks for the advice, I tried to repost but dont know how to.

 

Anyway been off 20mg of carbimazole since 9th december 2011 (end of 18 months trial) had my bloods done 20th december and received a letter
from thyroid clinic today saying I must go back on the medication as they say I'm back overactive although I dont feel it yet.

 

Results TSH 0.11
T4 15
T3 6.2

 

Thanks again.

 

PS - Let me know how to re-post



#7 Christine

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Posted 12 January 2012 - 06:08 PM

Hi Chris -

 

I will copy and paste your last post to the Graves' Disease and Thyroid Discussion section which can be reached here:

 

http://www.livingwit...oid-discussion/

 

Drop down to the second section and you will find the discussion board, located below the "pinned" topics. A lot of people have trouble finding it. Hopefully we can get the format changed to make it easier to find.

 

I will post your name in the subject line.

 

Chris







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