best of OR near total Thyroidectomy????

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after 15 months of awful Graves' disease symptoms, my thyroid just won't respond to anything, supplements, medicine's a goner

so my Endocrinologist says it's time to consider treatment surgically, and recommended me for a Near total thyroidectomy, ie , leaving the Parathyroid glands .

having met the Surgeon , I now hear from his secretary that I'm down for a TOTAL thyroidectomy, with no explanation .

i don't want more cut out than necessary.

any advice please??????

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12 Replies

  • Posted

    It is your right to know why. Call back and ask for an explanation. Tell them that you were to only have the thyroid removed and you want to know why it was changed.
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    • Posted

      I called his secretary and asked, as he wasn't there. She said very sternly that if the surgeon feels it's necessary then it's right to do!!!???

      not impressed

      he only squeezed my neck to check it for one minute, I'm unhappy and wish I d known when I was there , so I could ask personally .

      do I ask for another referral , or stand firm and get him to respect my he says its necessary as I think it's easier to remove the whole thing.??

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    • Posted

      Is he going to do surgery based on just feeling your neck? No other tests or anything? I would insist on speaking to him either on the phone or via email. Email is written proof, but I've never had a Dr do email so not sure how that works. When I've had surgery, the consent forms are signed while in the hospital. One time I had the nurse ask what my surgery would be. When I explained it, (she was checking against her paperwork) I had a different view of what was going on. She checked with the Dr and he said, "Oh, well we can do it that way" Not at all sure what his new plans had been.

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    • Posted

      Lol, hi again Victoria !

       my endocrinologist has been treating and testing me , don't worry, and he referred me for the surgery based on the tests. The surgeon checked my thyroid. The only change was to total rather than near total. So I'm going to chase it up.

      if he won't, I will ask for a referral to a different surgeon. Fingers crossed this won't be necessary.

      i need to get the surgery , I've been so ill and need to get well xx

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  • Posted

    Hi Jan,

    I wonder what it says on the consent form you signed at your appointment with the surgeon?

    If the form says 'partial thyroidectomy' then legally he cannot do a full thyroidectomy without asking you to sign another consent form. If that's the case you can ring his secretary and say you don't consent to a full thyroidectomy without further discussion with the surgeon.

    If you have signed a consent form for either partial thyroidectomy OR total thyroidectomy depending upon what the surgeon finds when he begins the operation then you need to contact the surgeon by email (NOT his secretary) and tell him that you feel uncertain about tthe full op and please could he either reply to your email, OR ask him to telephone you with the intention of providing more infofmation.

    It's always best to WRITE to a surgeon by EMAIL and bypass the doting secretary who's thnks her consultant is a god and can't make mistakes. You can get his email address by phoning the hospital dept and asking for it.

    Please let us all know how you get on.

    Best wishes Eleanor

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    • Posted

      Excellent advice, thanks.

      But, i didn't sign anything yet, I queried his decision as my Specialist referred me for a partial , not total. And I don't know why he's decided differently, especially as my specialist is sure my parathyroid glands are ok.

      i will ask his secretary for his email and ask him directly. 

      I know he will try to back it up with the words necessary in his opinion , but I don't see how he can dissent from my specialist who's known me for 15 months, and he only met me for five minutes?!!!

      thanks, I will update xx

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  • Posted

    A total thyroidectomy does not take your parathyroid glands, it just removes all thyroid tissue.  

    I had a TT and also a parathyroid adenoma (tumour) removed in one op.  The only way they would remove one of your parathyroids would be if they found an adenoma when they removed your thyroid.

    Once you have had your thyroid out, you will need to be on thyroxine or another hormone replacement for the rest of your life, but that is quite cheap and is manageable.


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  • Posted

    If you have raised blood calcium and raised PTH (parathyroid hormone) with low Vit D, that would indicate to the surgeon that you do have an adenoma.  The only way to be cured in that case would be surgery.  

    I think it may be quite normal for the surgeon to get your permission to remove an adenoma if he happens to find one when removing your thyroid.  I already knew I had the adenoma, so it was different for me.

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    • Posted

      Hi Anne

      i have Graves' disease, and T3 thyrotoxicosis 

      my adrenal system was determined as OK by my specialist so I've no idea why the surgeon has put me down for a total, when I was referred for a near total.....??

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    • Posted

      In graves disease, the whole thyroid is inflamed, so it seems logical to me that they would remove all of it.  That does NOT mean they remove parathyroids though.

      Parathyroids are not part of the thyroid, they are only behind it.  If they went in and found an adenoma on one of your parathyroids, then they would also remove that, since it can kill you and the only cure for it is surgery, but if the parathyroids are normal, they will definitely not remove it.

      I can't work out why they said you would only have a near total thyroidectomy for graves disease....why leave a bit of inflamed thyroid?

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