Viewing 6 posts - 1 through 6 (of 6 total)
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  • djl
    Participant
    July 27, 2014 at 2:05 pm
    Post count: 3
    #1060478

    Hello. Diagnosed with Graves about 2.5 years ago. Quite surprised as i had no symptoms and it was really an incidental finding by my doctor. Had a TT about 2 years ago. Have been hypo since and have been taking 125 mg medicine every morning at the same time. At my most recent lab and doc visit, tsh is within normal range but ft3 and ft4 showing hyper again. Doc said slight possibility of thyroid regrowth. He decreased my med and we are checking labs in about 6 weeks. Has anyone with graves had this happen? I don’t think it is very common but would be my luck. If tsh is normal and ft3 and ft4 is not, I am just wondering if I may have misunderstood the doc. If anyone has any input I would greatly appreciate it!

    snelsen
    Participant
    July 28, 2014 at 9:07 am
    Post count: 1909
    #1182853

    HI, NEWBIE!!
    Well, that IS interesting!

    From now on, in the future forever, I suggest getting copy of your labs,just so you can refer to them any time you want. Maybe you already do that.

    In answer to your question, I have no idea of thyroid regrowth, but I sure have not heard of it ever. And I have been dealing with this whole Graves’ thing since 1959!

    Perhaps it would be very helpful for you AND your doc, to get the original path report from your TT, as well as the operative report. It would tell you and your doc more information Perhaps he did leave a little piece, who the heck knows?]

    I am very happy for you that you did not experience the hellish time most of us had with Graves!!!!

    Last thought. How do you feel? Any different? Sometimes it’s hard to know.
    Do write again.
    Shirley

    djl
    Participant
    July 28, 2014 at 9:57 am
    Post count: 3
    #1182854

    Hello Shirley,
    Thank you so much for your prompt response. Until I heard it from my doctor, I had never heard of it either. He said it is very, very, very uncommon after a TT. But in doing research, if a small piece is left behind, it could definitely happen. With the TSH is normal range but the FT3 and FT4 being abnormal, he is hoping that by decreasing the levothyroxine dosage, I will get out of the hyper range with my next set of labs in a few weeks. He just wanted me to know of the possibility so I wasn’t blindsided if after ultrasound it was coming back.
    I have never felt bad with the Graves although from what I understand, it was pretty bad. The only symptom I have now is a rapid heart rate which ranges from 105-120 every day. Other then that issue, i am a very fortunate one for sure and feel so sorry for everyone who has this disease. I will keep you posted after my next set of labs and doctor visit. Thank you again for responding so quickly!

    Kimberly
    Keymaster
    July 28, 2014 at 10:34 am
    Post count: 4294
    #1182855

    Hello – The studies I’ve seen put the recurrence rate for partial/subtotal thyroidectomy at around 6-7% and close to 0% for total thyroidectomy.

    The most likely scenario is that your body just needs a tweak in the dosage of replacement hormone, but that’s good that you and your doctor are staying on top of this!

    djl
    Participant
    February 17, 2015 at 12:44 pm
    Post count: 3
    #1182856

    Hello all..
    Several months ago, I had asked about if anyone heard about thyroid regrowth after total thyroidectomy (no RAI) for Graves disease. Since that time, I am still having Hyper symptoms and labs are reflecting hyperthyroidism. An ultrasound was performed and the results said that left side surgically removed but right lobe is measuring .75 x 1.2 x 1.20 cm with no nodules. That confuses me since that side was removed at the same time as the left. Has anyone ever had this happen to them and if so, was another surgery performed or RAI or just wait and watch? I don’t think it’s too common but was wondering if it has happened to anyone else or is it just my luck?

    Kimberly
    Keymaster
    February 17, 2015 at 3:02 pm
    Post count: 4294
    #1182857

    Hello – That would certainly be unusual for a total/near total thyroidectomy, although in theory if any living tissue is left behind, the thyroid could potentially regenerate.

    If you are currently hyper, the first step would be to work with your doctor to taper down and/or discontinue replacement hormone, with periodic lab checks.

    If you are already off all replacement hormone and still hyper, you will want to talk to your doctor about all three treatment options (surgery, RAI, anti-thyroid meds) for hyperthyroidism. The issue with surgery is that it is riskier when you are doing a thyroidectomy for a second time, and RAI might be a challenge in terms of the small section of thyroid tissue not taking up enough of the radioactive iodine.

    Take care – and keep us posted!

    Kimberly

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