Graves full thyroidectomy

[birkie]

Hi everyone ❤️

Could I reach out to members who suffered with graves disease

I had graves thyrotoxic in 2019, full thyroidectomy due to being thyrotoxic and high thyroid antibodies.

I was put on oral iodine for around 5wks before surgery could be performed , as my surgeon refused to go in while my thyroid was toxic...my T4 was 100, my T3 was 39.6 and my TSH was undetectable.

I had a fine needle biopsy done in Liverpool 2023 for a parathyroid Adenoma, but the cells came bk as thyroid cells, I then had a US scan 8/11/2023 which identified a hypoechoic nodule in the region of the right/ isthmic thyroid bed at approximately 20 x 8mm.

I had a second US done on June 20th 2024 which showed no change in the size of the thyroid remnant.

Surgeon as booked me in for another 4Dct scan next year to hopefully identify the parathyroid Adenoma 🙏.

But I want to ask our members

Could this bit of thyroid tissue still be graves?

I was told by my surgeon he would remove all thyroid remnants from my neck as I was graves thyrotoxic, what happens if some tissue is left behind?

[Regenallotment Ambassador]

Hey Birkie,

Sorry you haven’t had a reply, I’m tagging PurpleNails and pennyannie who are likely to know most on this 🤗

[pennyannie]

I don't know the answer -

but would guess if there were remnants left they would not cause issues -

though have read of some where the thyroid has regrown -

guess for peace of mind a scan might be useful though accessing this service likely another challenge you do not want !!

[birkie in reply to pennyannie]

My parathyroid surgeon as arranged for me to have a 4Dct with contrast next year, of course this is to detect an Adenoma, but wondered if it would show up the thyroid remnant to..🤷‍♀️

[pennyannie in reply to birkie]

Sorry - but I have no idea - is it worth dropping the parathyroid surgeon an email expressing your concerns ?

[birkie in reply to pennyannie]

I suppose I'm not to concerned about it effecting my levels , but I'm getting the same toothache/ pulsing / throbbing pain in that area, as I did when my thyroid was in my neck.🤔

I get shooting throbbing pain , that's why the parathyroid surgeon did the FNB she thought it may be a Adenoma , but turned out to be thyroid cells, confirming a thyroid nodule.

I just wanted some information on graves could it re-animate it?

But my levels don't show that, just the flipping throbbing/toothache and pulsing pain🤷‍♀️

[nightingale-56 in reply to pennyannie]

Hi pennyannie and birkie my thyroid has regrown after sub-total for Graves, but is not working. At the moment it is playing up a bit though and I have twice had to lower my dose of Roseway Labs NDT. Will do another test (from Lolahealth) in a couple of months time. Sorry can't be more helpful.

[birkie in reply to nightingale-56]

I'm getting throbbing/ toothache and pulsing pain in that area, just like I did when my thyroid was in my neck, feels much the same ,my voice as also gone again, but that could be the parathyroid problem as its supposed to be on my laryngeal nerve 🤷‍♀️

[nightingale-56 in reply to birkie]

Hope You soon improve birkie . Got an awful sore throat at the moment, so sucking Strepsils.

[pennyannie in reply to nightingale-56]

Thank you - more useful than me at any rate - let's hope the effects minimal.

[tattybogle]

i don't know , but just thinking out loud here :

IF the bit of thyroid (remnant / regrowth / whatever) was being acted on by any TRab ( if you currently have any TRab) and was still overproducing T4/T3 as a result ,

then you would see the excess T4/T3 in your blood results,

but as your T4/T3 levels have stayed low / comfortably within range , that suggests that if there are any TRab acting on it , it's simply not a big enough bit of thyroid tissue to be able to produce very much T4/T3 anyway, even if it is being stimulated by TRab

so if/ when TRab are present, their effect is not enough to give you 'too much' T4/T3

and if TRab not present (at the moment) .. then graves not active, so no effect (at the moment)

so maybe ...... if/when TRab still active , graves might cause you some relatively small ups and downs in T4/T3 levels , ie. not enough to send you properly hyper again , just enough to make your t4/T3 results a bit confusing sometimes and need to alter dose of NDT ?