Thyroidectomy

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Hi I just wanted to know if anyone has had a thyroidectomy?

I have been told by my Endo that this is the best possible way of resolving my Graves as I have had allergic reaction to Carbimazole and PTU is making me feel very depressed. Because I have the Thyroid eye disease I'm not eligible for the Radiation.

My T4 Levels are currently at 46.6 (they have come down from (60)

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  • Posted

    I've had a partial thyroidectomy 20 years ago and recently diagnosed with Graves.  I wouldn't go for the RAI (lots of further health problems reported following treatment).  If you do go for the thyroidectomy.  Keep an eye on your symptoms because many people are reporting problems whilst using levothyroxine which is currently prescribed on the NHS.  Others are turning to a natural form of thyroxine which can be ordered on the internet and is more freely available in other countries.  If you have a Facebook account, there is a page 'Thyroid Group UK' which is great for advice and support.  I'm a member of that page too, it's a very good source of information from the patients point of view.
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    • Posted

      Hi Nisee,

      Thank you - I'm concerend about the Scaring? I have also been told that you have to be on mediaction indefinitely after that?

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    • Posted

      Hi Lauren

      Agree with Ann, definitely worth investigating natural solutions.  I'm waiting for a book to be delivered in the UK (just published).  I'm going to try that but am prepared if it doesn't work to go for the thyroidectomy.  We are all different and some might respond to natural methods where others might not.  I recommend joining the 'Thyroid Group UK' page on Facebook, lots of good info and support.

      Regarding the scar, it depends upon your own body.  Unfortunately, I've got a keyloid scar which sticks out like a ridge - in childhood it never happened any other times, again we all heal differently.  At first I used to use make up but only for a year or so, for the last 19 years it hasn't bothered me.  Sometimes people look at it but it doesn't bother me any more.

      If you have the full thyroid removed you will definitely need medication for the rest of your life.  Again, current thinking in patients I've met through Facebook is that it's best to go down the natural medicine route.  Unfortunately, this is not available in the UK and people in the UK are ordering on the internet, with some very promising results.  Some doctors support this and others do not.  Read up before you make any decisions.

      Where abouts in the UK are you?  I'm in Swindon, Wiltshire.

      Best wishes,

      Nisee

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  • Posted

    Hi Laurren

     

    I too bad reactions to both carbimazole & PTU & was a week away from having surgery when I discovered a lot of information all at once which lead me to believe it is possible to heal naturally - not that Endos agree!

    I don't know what your doses of meds have been but for me, looking back, I was given too much too soon & my body could not deal with it. When I was on high dose of carbimazole I ended up in A&E and was told I had effectively overdosed on medication! The Endo switched me to PTU & I had horrible side effects, swollen joints, massive weight gain, itching, heartburn etc - Endo said they were nothing to to with the drugs & told me to go to a physio! needless to say once I stopped taking meds all the issues went away. 

    However, I then made the mistake of leaving myself untreated for 5 or 6 years, which was a really stupid thing to do. I then became very ill & developed rheumatoid arthritis 2 years ago.  I started back on carbimazole but on a low dose which was then gradually increased & I was fine doing that & able to tolerate it.

    I recommend you do as much research as you can, basically the thyroid is not the problem it is you immune system which is out of balance.  Even if you remove the thyroid you don't fix what is actually wroing with you & it could mean you may develop another auto immune disease in the future because you have not got to the root of the problem.

    It is not an easy path to go down, it requires massive diet and lifestyle change but it's up to you to take charge of your own health

    There are some websites which may help you.

    Also consider seeing a naturopath, they will help get to the root of your health issues.

    By the way I have read that people with TED have had good results by supplementing with selenium - perhaps you could research this some more.

    Don't be pushed into making an irreversible decision. 

    Good luck in your journey back to health.

    Ann

     

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  • Posted

    I had a partial thyroidectomy in 1995 when I was in my 20's and the operation was fine, sore for bit afterwards (understandably) but was back at work in 2 weeks. The scar was never an issue, it's a very thin line in crease of neck and no one ever noticed it.

    just make sure full thyroidectomy as I got graves in 2013 and as not recommended to have a further op have had RAI this time to treat and am now on levothyroxine, which seems to be working.

    good luck with your treatment 

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  • Posted

    hi lauren, i had a total thyroidectomy 2 years ago and its the best thing ever.the actual operation was sooo easy to deal with, the scar is minimal and i feel great. i was the same as you with graves and thyroid eye disease, i have neither now.
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  • Posted

    Hi Lauren.  I was diagnosed 2 and half years ago  and after 12 months on medication to get my levels down i had a total thyroidectomy.  It was instant relief. anxiety attacks stopped immediately and i could actually sleep at night.  i felt calmer and less depressed.  i am on thyroxine for the rest of my life but not too worried about that.  I have needed to take anti depressants as well as still suffering depression but put a lot of that down to a messy divorce and losing my mother among many other things.  I was put on a drug called prestiq which was wonderful but made me gain weight so have recently swapped to valdoxin but finding my moods up and down a lot.  The whole graves thing has been a rollercoaster ride and really i think we will all suffer from it for our whole lives.  I did speek to a lady who tried the natural way and she said it took her a good 12 months to get it under control but was happy she had chosen that way.  i chose surgery as I knew i could not stick to the natural way as I love my chocolate and soft drink too much. I found the scar terrible to start with but it calmed down after a while and now i dont even try and hide it.  nobody mentions it and i forget it is even there and I used to model when i was younger and to me it is more important to be happy.  It is your body and your choice what you do.  Good luck with what ever you decide and i wish everyone good health and happiness.....
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  • Posted

    Hi, I had a partial thryoidectomy 40 years ago and had a keloid scar but over the years it has shrunk and is now barely noticeable.  I was fine for a few years and needed no medication until my thyroid became underactive and I had to go on levothyroxine. I have had no side effects from the medication but It took a long time to find the correct dose. I am fine now, really well and have no regrets. 
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