Just spoke to my parathyroid /thyroid surgeon 😁

[birkie]

Morning all💗

Well just got off the phone with the surgeon in Liverpool, who I'm under for primary hyperparathyroidism, I had the 4D CT scan done last Wed as I mentioned in a few posts recently 🤦

She as the scan photos but not the written report yet, but she as said 2 things have shown up one on the right side and one on the left, the one on the left is buried deep in the tissue hence it not showing up on the F18 pet scan.

Although she as not fully committed on these being parathyroid glands, I would have thought her being a parathyroid /thyroid surgeon she may have an idea what they are🤞so just waiting on the written report now.

But interestingly she noted the (14 x 7 x 21) mass of thyroid tissue found on the F18 pet scan,( identified as thyroid tissue from the FNB) she noted its vascular 🤔 and indicate it may be producing thyroid hormones, but asked me again if I was hypo or hyper thyroid, I again told her I was graves thyrotoxicosis full TT in 2019.

She as requested I get full thyroid and thyroid antibodies blood tests done.... 🤣🤣🤣🤣 Yeah I told her I'd been trying to get my surgery to do that 🤦seeing as I've not taken any thyroid medication since January 31st, 😡 to say the least she was appalled, and she works for the nhs😂.

She is sending me a form to be sent for full thyroid blood work along with thyroid antibodies, I can present it to either my gps surgery 😂😂😂 or my hospital.. Guess where I'm going... 🏥 My hospital which is nearer 👍

But I'm very pleased someone is taking note of my dilemma, she as also asked me to try to get the endocrinologist appointment for June to be brought forward, or for the gp to try me on the vencamil ASAP until june👍

[helvella Administrator]

Thank goodness there has been some movement.

You are so right to make sure this parathyroid surgeon is made as aware as possible of how you have been treated, or rather, not treated. She may be unable to change anything regarding your GP surgery but at least she can be aware and better understand what you might need.

[birkie in reply to helvella]

Thanks helvella ❤️

I am hoping that the 2 anomalies are indeed parathyroid adenomas and hope she is willing to go in and have a look around, she did say if nothing showed up on this scan she would not be willing to go in and rummage around because I've had invasive surgery already (full thyroidectomy) although she as done parathyroidectmys on people who've had full thyroidectomys.

But 2 anomalies have shown up🤞

But I'm also interested in the thyroid tissue being vascular 🤔 and maby producing thyroid hormone, but also bothered if it would present as graves again 😭

Blimey its a flipping minefield this thyroid illness, I had full thyroidectomy in 2019 evicted the bugger.... Its like it's taunting me...... I'M BACK!!... 😂😂😂😂😂😂

[helvella Administrator in reply to birkie]

The general view is that thyroid cannot regrow and be functional. But there seem to have been a number of cases where exactly that happened.

There have certainly been a number of cases where tissue has regrown but has ended up being non-functional, or only very slightly functional. In the context of someone post-thyroidectomy, and taking a decent dose of thyroid hormones, even modest functionality might have no significant effect as TSH will likely be fairly low. If it functions, even partly, but is out of control - whether due to excess stimulation by Graves antibodies (TRab/TSI) or being autonomous - who knows what will happen?

[birkie in reply to helvella]

Yes she did say regrowth usually does not produce hormones but in some rare cases it can re grow and produce thyroid hormones and in some cases can come back as graves🫣.There was a case of a lady in America who had full thyroidectomy for graves disease, after around 18 months she developed what she said were hyper symptoms, but her endo just said she was probably taking to much T3, and her dose was dropped but she still felt hyper on some occasions she likened them to when she was attacking her thyroid in graves.

But unfortunately again like many, many endocrinologists he dismissed it as over medicating🙄

Her husband insisted she go to another endocrinologist and insist on blood work, she discontinued her T3 for 6wks and saw the endo, to her amazement she was producing high T3 and her TSH was 0.01, after a scan it was found she had vascular thyroid tissue out side the thyroid bed which had grown producing thyroid hormones, hence making her graves again and she had high thyroid antibodies which sealed it.

They went in and removed the tissue and she went back to hypo then went back on T4 🤷.... Weird 😱