My Research into thyroid tissue growing back after TT🤔

[birkie]

I had full TT in 2019 due to graves thyrotoxicosis, as some members will know I had a US scan performed in 2022 for a Parathyroid adenoma, the surgeon noted a nodule of 6/7 on the left side, but nothing else.I went on to have the F18 pet scan to determine what the nodule was, but a mass of (14x7x21) up took on the right side, FNA showed it to be thyroid tissue.

I was first researching as to whether the mass could be producing thyroid hormones, I went on to a site where an Indian endocrinologist said "in cases of partial thyroidectomy the thyroid can regenerate, and if you had graves it could come back as graves, in that it could be auto immune again.

However if your had total TT the chances of your thyroid regenerating is extremely unlikely, in these cases it would be that the thyroidectomy had been performed incorrectly .

Mine as grown back on the right side, there were plenty of posted the same as mine saying after there TT thyroid tissue as grown back, one person in the US was told if you have full TT your symptoms of graves will go, and she found that to be the case... But for 15 years she as never took any thyroid medication 😲.. But her thyroid as grown back.

One post asked her if she was being honest, as if she had no thyroid, how was she feeling not taking any thyroid replacement? And if this were true she was very lucky, she said she felt OK, and was never told to take thyroid medication as the surgeon told her TT would cure her.. but recently she started to have hyper symptoms again and had a US scan which showed her thyroid had grown back 🤔

So she wondered if she'd been producing thyroid hormone again and that's why she felt ok🤷‍♀️

This is something I will be asking at my endocrinologist appointment 👍

The thyroid... Its a weird thing🤦‍♀️

[RedApple]

'The thyroid... Its a weird thing🤦‍♀️'

So very true. I hope your endo is knowledgeable enough to have a sensible discussion about it with you. Sadly, few are.

[birkie in reply to RedApple]

My gp is arranging the endocrinologist appointment because the one I saw on Dec 27th just told me to seek another endocrinologist, as she doesn't want to deal with it.I've told my gp I will vet the endocrinologist before I agree to the appointment, I also told her to avoid the diabetes ones as this endo I saw in Dec is a diabetes specialist 👍

[RedApple in reply to birkie]

🤞As many of us know, good thyroid endos are thin on the ground. Hope you get to see one of these rare creatures!

[birkie in reply to RedApple]

😂😂😂😂 Yes they are very rare indeed, I'm crossing everything she comes up with a competent one, but I'll look them up before I commit to seeing them👍Someone should do a skit of David Attenborough looking through a hospital, trying to locate a good endocrinologist, I can just hear his voice.

I'm here within a place called a hospital, looking for a competent endocrinologist.

"There very rare, no one can find them, they hide somewhere within these clinical walls" 😂😂😂😂😂😂

[RedApple in reply to birkie]

🤣

[Delgor in reply to birkie]

🤣🤣🤣

[Maztee]

Hi birkie. I would like to meet a good Endocrinologist. I wonder how we could get passes to a conference about the thyroid where things are fully discussed. Some papers are so interesting, particularly Indian ones I've noticed, but endos only seem to pick up a few key points with which to gaslight us and appear to have little in-depth knowledge. The researchers work on mice .... where are the communications between researchers and endocrinologists and, crucially, thyroid patients? If you find any good, interested endos please let me know as I have lots of questions!!!!

[birkie in reply to Maztee]

If I find one I'll let everyone know 😂But the one thing I've found since suffering from graves thyrotoxicosis is endocrinologist know very little about thyroid conditions.

Obviously I myself knew nothing, but then again I didn't go to a university to study to become an endocrinologist.

After over 6 months of suffering from awful symptoms I looked them up on the NHS Web site, it kept saying overactive thyroid, I relayed this to my gp several times to no effect, he just blamed the menupause.

8 months later I collapsed and were taken to the surgery where a new GP diagnosed me on the spot.. Hyperthyroidism.

Even the eventual diagnosis didn't go well, as I couldn't take the anti thyroid drugs, but also the gp who diagnosed me left the surgery having only lasted 3wks in it.

So it was back to the gp who couldn't diagnose me, and he never took any thyroid bloods while I was on anti thyroid drugs.. Diagnosis sep 2018.. Thyroid storm Feb 2019 first bloods taken in hospital when in thyroid storm😡

No one took responsibility for it, and then I see the elusive endocrinologist... Don't get me started on him.... It was a nightmare from the being and still is😡😡

[Maztee]

Whatever is going on in the NHS is having a devastating effect on our health. I wonder if we could collate our 'stories' (accounts may be a better word) and publish them or send them to someone, anyone? It used to be journalists but I'm not sure they often make the effort any more. ITV did well with the post office fiasco maybe the same journalistic team would investigate how appallingly we are treated with a relatively straightforward condition to treat. It's the same with the hyperparathyroidism I have too - gaslighting, years of poor health which affects ones ability to earn money, look after your family etc. All the guidance is there for these conditions to be treated but somehow doctors seem unable to follow it but what is constraining them?

[birkie in reply to Maztee]

First diagnosis of primary hyperparathyroidism was 2004 for me, endo was reluctant to actually put it to paper, I was left with the watch n wait, I developed kidney stones, ostiopeania, the lot.Second diagnosis 2020 and again they just wanted to do the watch n wait 😡 but my son said no way, he got me to a parathyroid surgeon in Oxford he saw all the blood work, he took my symptoms seriously, got me to a specialist in Liverpool and I got the diagnosis confirmed.

No endocrinologist up here in Cumbria would give me the diagnosis, keep saying "ho your calcium as gone back to normal" ... It was very top end 2.54 2.59 with over range PTH, then in Liverpool both calcium and parathyroid were over range.

I don't know how they get away with it, let alone sleep at night😡

[Maztee]

We seem to be in a similar situation! I know I spoke to you previously on here. Maybe we should continue our chat. I'm having an eye jab tomorrow (it's neverending) so may be a day or two 🙂

[birkie in reply to Maztee]

Good luck for tomorrow 👍I've just had a herimetical vein occlusion, with optic swelling, dot a blot clotting,, been seeing eye specialist since sep/oct... Think your right we are in a similar situation 😂

[Maztee]

Poor you. Is it treatable?

[birkie in reply to Maztee]

Waiting on a 4D Ct scan in Liverpool, the surgeon is looking for a target (the over active para gland) 🤞

[Maztee]

Is it AW? Not that I'm in that area but heard good things.

[birkie in reply to Maztee]

Yes it's her, she as been amazing in getting me diagnosed, when no one here in Cumbria would, but she wants that target so she can go right to the gland, so as not to cause futher damage to my neck as I've had TT already.But she as stressed if she doesn't see a target she won't operate, which seems cruel to me as my blood tests done by her confirm the diagnosis of phph, and I've had, and passed kidney stones have ostiopeania, calcification in most joints and the LAD in my heart, I can only see me getting worse if no surgery is done to find the offending gland 😔

[Maztee in reply to birkie]

That is so stressful for you🤗I have also had a TT and it's the first thing the endo said to me - surgeon may be reluctant to go in as it'll be a mess in there with scar tissue etc. Talk about putting you at ease! I just want my sestamibi done as nothing showed on US. I'm guessing if we have no thyroid to hold them in place they could have migrated😱 that makes me think I'll get a loan and go to Oxford and think about how to pay it back later! The most experienced surgeon is there and seems not to give up! The logistics are tricky but it's what I'd do for my kids if need be, so I deserve it too (I keep vacillating though)!

[birkie in reply to Maztee]

Bet that surgeon is SK... I've seen him, it was he who got me to AW.. He found a nodule on my left side, on US scan, probable parathyroid gland or enlarged lymph node, then AW did F18 pet scan.To both our amazement the scan found a mass of 14 x 7 x 21 but on the right above the thyroid bed and in the thyroglossal tract, FNA found it to be thyroid tissue 😲 but it's grown in a year because SK didn't find it in 2022 on US scan.

I really wish I could afford to go private for the surgery, I wouldn't even be accepted for a loan😔

[RedApple in reply to birkie]

birkie, have you seen this website? hyperparathyroiduk.com

[birkie in reply to RedApple]

I'm on Hyperparathyroid UK Action4change.It's a great site, I got introduced to SK from the site, he looked over my blood work and requested an appointment with him in Oxford saw him in 2022

Wouldn't have got my diagnosis if not for him, and the specialist at Liverpool 👏

[RedApple in reply to birkie]

Thought you would know about it, but thought it better to ask than to assume