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Thread: How does one feel after total thyroidectomy?

  1. #1
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    How does one feel after total thyroidectomy?

    I'm 38. About a month ago during a physical my doctor felt a couple of lumps. Well, ultrasound, endocrinologist, biopsy and a phone call with those not-so-fun words later, I'm struggling to decide what to do. I have a heterogeneous thyroid with papillary differentiated carcinoma. Lots of little nodules with one being 1cm.

    I've read plenty online and talked to a surgeon who says I'm right on the edge of recommended treatment. Doctors say the standard of care is to get the thyroid out, no matter what the chances of it turning into something else. I read that roughly a third of people out there have some cancerous cells in their thyroids but for the vast majority it doesn't turn into anything. But naturally I don't want to take chances that this can metastasize.

    My concern with just having it done is how will I feel after? I imagine that thyroid hormone levels can fluctuate throughout a person's day, but that won't happen if I'm on simple replacement.

    I'm a software engineer but I lead a fairly active lifestyle. I work out three times a week, I bike, I have two young kids who demand a lot of attention, and I have an active libido. How will those things change?

    How long a period of time does it take for the doctor to figure out the correct dosage for you?

    Has anyone used Thyrogen as an alternative to "going hypo?" Are there any drugs that counter the effects of going hypo? How frequently does one have to go hypo anyway and for how long?

    I'd like to live a long, healthy and active life if possible.

    Is it possible?

  2. #2
    Newbie New User jenny05g's Avatar
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    I can only respond for myself. I had a total thyroidectomy and lymphectomy in 1999, yet to this very minute have been swinging on the tsh fluctuations. It's amazing how you can spend 12 years between 150 and 175 mcg and still have a tsh of 5.9. That being said, I am able to function despite this. I'm an RN on a busy heart floor working full time 12 hr shifts, I work out and I have 2 children 8 and 12 years. I have went hypo for scans and have taken Thyrogen the past 2. I will NEVER willingly go hypo ever, as you feel so bad it's undescribable. The bad thing about Thyrogen that I had ran into was that some insurances give you a hard time covering it. But we fought and it was worth the fight.
    Hope this helps

  3. #3
    Administrator Top User pbj11's Avatar
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    Hi Jenny,

    Glad to hear you got the bugger removed, but sorry you're having tsh issues. Out of curiosity, what is going hypo and what is it for? I'm lost on this one. I have your run of the mill thyroid conking out, so have no idea about a lot of the surgical, etc. aspects. One of my SIL's had surgery and the other one has Hashimoto's.

    Thanks
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  4. #4
    Newbie New User jenny05g's Avatar
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    Hi, going "hypo" is when you go off your thyroid hormone in order to have my scan to ensure you don't have any thyroid tissue left which can cause my cancer to recur. Having the synthroid in your system can mess up the scan and cause a false positive. Thyrogen injections are used more commonly now so you dont have to go hypo. If you can imagine not taking thyroid meds for 4-6 weeks, when you have no thyroid, it was bad. So the injections are nice!

  5. #5
    Administrator Top User pbj11's Avatar
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    Ahhhh, I see. So the medication offsets the bad side-effects of going off Synthroid. Do I have that right? I honestly don't think I'd know the difference, but I'm a lightweight and have no enlargement, etc. to worry about.

    Thank you very much for explaining!

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

 
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