I recently had a FNB(fine needle biopsy) on a mass (13x12mm) in my right thyroid bed, the surgeon in Liverpool gave me the results, which at this present time is confusing me🤔Firstly my blood work shows primary hyperparathyroidism.
Bloods taken June 22nd 2023.
Calcium... 2.65..adju to 2.61)..range 2.10.. 2.60)..... (Primary hyperparathyroidism)
2 Previous bloods in 2020 showed normocalcemic) calcium top end) PTH 8.1. And 9.5)
Surgeon in Liverpool agrees I have a parathyroid problem 👍
So now to the report on the FNB.
Surgeon states the mass looks like thyroid tissue, this mass had a low grade uptake on the F18 pet scan
I explained I'd had my first US scan with a private surgeon in Nov 2022 and no 13x12 mass was detected on that scan, only a nodule of around 6x7mm was noted.
She had no idea why this was🤷♀️ given the mass in my right thyroid bed is 13x12mm much larger than the node on the left of 6x7mm.
Would the parathyroid surgeon not have picked this mass up? , as Liverpool did on doing the FNB found immediately on the US scan 🤷♀️
Still, she had no real answer for me, she as now agreed to the 4Dct scan but this will be in feb next year, she is trying to get a target directly to the rouge gland, although in some cases glands don't always show up.
So my questions to members is, was this 13x12 mass there in 2020?
Why didn't the parathyroid surgeon mention it?
Why did I have a low grade uptake in that area?
(could a rouge para gland be hiding in the mass?
I had graves thyrotoxicosis in 2019 and had my whole thyroid removed, I do known that full removal doesn't always mean all thyroid tissue gets taken out, some residual tissue can remain.
But would this tissue produced thyroid hormones?
Only asking because my blood work as been all over the place since 2019, some showing hypo, then some showing over medicated, I'm not taking enough to be over medicated on 20mg T3.
Also bad absorbtion isn't helping (runny stools, cramping, inflammation, since going on synthetic thyroid medication 😞)
As I mentioned I'm seeing an endocrinologist on Dec 27th.. Not a very good one I'm afraid she is a diabetic specialist.. It says on the appointment letter🤦♀️ although I have seen her before and that was a disaster 😞 so not holding out much hope she will be of any help 🤷♀️
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birkie
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Surgeon in Liverpool agrees I have a parathyroid problem 👍
So now to the report on the FNB.
Surgeon states the mass looks like thyroid tissue, this mass had a low grade uptake on the F18 pet scan
I explained I'd had my first US scan with a private surgeon in Nov 2022 and no 13x12 mass was detected on that scan, only a nodule of around 6x7mm was noted.
She had no idea why this was🤷♀️ given the mass in my right thyroid bed is 13x12mm much larger than the node on the left of 6x7mm.
These findings should help to show endocrinologist “you’re not making any of this up”
I'm wondering if this mass of 13x12 that showed low grade uptake could be effecting me? and why did it show low grade uptake in the first place? 🤷♀️,the parathyroid /thyroid surgeon in Liverpool said she doesn't want to operate on the mass and feels it better left in situ😞 but what if there is the little para gremlin hiding in that mass?I'm afraid she is consentrating on finding the target, but plenty don't show up on scans🤦♀️.
Pretty miffed she is taking this route, knowing my bloods state primary hyperparathyroidism, which in its self means there is a problem with a parathyroid gland🤷♀️
What can one say - I should imagine that a lot of people on this forum feel that they haven't had the best advice and support that they should have had from the medical profession. I'm sure that many would say that it's unforgivable the way they have been treated (me included) but life is what it is and we can only fight for fairness and justice which is what you have been doing. Without you realising it you will have been growing stronger and learning more and more - then look out crappy endos as birkie will not settle for second best! Keep Strong😉
parathyroid and thyroid are separate glands. If you have Hyperparathyroidism can only be cured by removing the tiny gland/s involved. Most people have 4 but some have more and they can migrate in to different areas of the neck and even upper back. The glands left behind will take over the removed ones job which is to regulate calcium in the body.
You need a good surgeon as sometimes the enlarged glands can only be seen during the operation and not on scans etc. They are tiny, like a grain of rice.
Yeah I've become an expert on all that is thyroid and parathyroid,I was first diagnosed with primary hyperparathyroidism back in 2004 but knew little of the condition then, I was left with the watch and wait 🤦♀️ I thought at the time that was what endos do.
Unfortunately over the years my calcium has been high.. (only found these high calciums in my records in 2020, when on my thyroid bloods, calcium showed as high again, gp never bothered 🤷♀️ so I insisted he do something because I felt awful.
Upshot... Endo said again primary hyperparathyroidism 🤦♀️ but again wanted to do watch and wait.
Honestly don't know what they were waiting for because I've passed kidney stones, have ostiopeania, calcification in most joints and LAD of my heart, lost around teeth, because as the dentist told me they are worn from the inside, never seen that kind of wear, if only he looked into primary hyperparathyroidism 🤷♀️.
That's all the parathyroids do.. Regulate our calcium.
Unfortunately because I've had full thyroidectomy I have a lot of scar tissue, and now apparently some mass of thyroid tissue in the right thyroid bed which had a low grade uptake recently (could the little para gremlin be hiding in that mass?.
This surgeon is reluctant to operate on it and as said its best left in situ🤦♀️which I feel is the wrong decision, she is however doing the 4Dct scan next year hoping to get a target, but as we both know these little gremlins don't always show up on scans🤦♀️and going in, is the only option for a cure 👍
I think the Dr is wrong too. It’s so little understood but you have seen the damage for yourself. How old are you? If you don’t mind me asking .
I can recommend a surgeon in Oxfordshire . He removed my husbands enlarged one in 2021. We had to go private but he does work at John Radcliffe NHS in Oxford. You should be able to chose your hospital now Covid is over. He is the best and such a caring man too. It was 5K privately.
I'm 61, but we're in my early 40s when I was first diagnosed with primary hyperparathyroidism.The consensus seems to be.. amongst endocrinologist that your calcium must reach 2.85 ( guidelines) before any intervention can occur.
Obviously we now know that to be poppycock, as plenty of patients never reach a level of 2.85 (calcium) but still have all the horrid symptoms of this condition.
In contrast a very good friend of mine started with similar symptoms to myself, I recognised them right away and advised her to see her GP, with the intent of getting PTH and calcium bloods done, she did and her calcium was over 2.85 on 2 separate occasions with over range PTH (diagnosis, phpt)
She was seen immediately by a surgeon who removed her gremlins (2) she returned to work and the gym, all in all, she was symptomatic for around 6 months before her op.
I myself don't fall into this goldilocks category as my calcium fluctuates from over range to top end with the same being for the PTH.
But my gp and this surgeon in Liverpool have caught both calcium and parathyroid hormone out of range on more than 4 consecutive occasions, but because it's sporadic, they waited up to 6 months between bloods🤦♀️ they felt the watch and wait would be appropriate.
I myself this time said no I'm not waiting and went to see a private surgeon in bambary who works in Oxford nhs🤔.
He found the nodule on the left side and sent me to this surgeon in Liverpool, who confirmed by bloods I do have a parathyroid problem, but she seems uwilling to do any surgery until she as a target🎯🤦♀️.
I don't have the money to go private for the operation, if I did I would go to the surgeon in bambary, his clinic in Oxford nhs is now only taking patients from that catchment area, I live in Cumbria, his waiting list is very long, but privately I could be seen within 3 months😢
I'm sending Mr k... (Yes I reckon it's the same person, he was lovely 💞) the F18 pet scan report because it showed a low grade uptake in the thyroid bed of a mass 13x12 on the right side.He did a US scan at his private clinic on Nov 20th 2022 and only found the 6x7mm nodule on the left side, no 13x12 mass in the thyroid bed on the right🤷♀️ I'm pretty sure he would have mentioned it if he'd seen it, even if he thought it was only a peice of thyroid.
So I'm asking myself... Why did it not show up on his US scan? And believe me he was very thorough, the US scan I had in Liverpool on Nov 8th found it immediately.
All very confusing.. So I'm sending him all bloods done and the F18 pet scan results, I also want to know if he saw this mass of 13x12mm when he did his US scan in Nov 2022👍
The images are stored. They can take a second look to see if there was something there at the time. You are entitled to a second opinion about the radiology. I find US images to be rather impressionistic and MRI is better.
Also, to me this sounds like negligence. Your quality of life is adversely affected and they must take it seriously. You may need to introduce this 'n' word the next time you are in the presence of any specialist who is supposed to be dealing with your situation. Sometimes we have to shoot from the hip.
I've only known one person who had hyperparathyroid tumour. She developed psychosis. After the surgery she went back to her normal. Which I'm not really sure what it was because she also had bipolar which I'm sure complicated the situation. Or perhaps the bipolar was a misdiagnosis due to the effect of the hyperparathyroid situation.
At least the tests for calcium and parathyroid hormone were clearly out of range so that part of the situation was dealt with.
Yeah 2 US scans showed quite different results, or perhaps the 13x12 mass was not there in 2022🤔 which begs the question.. As this thyroid mass grew?. The FNB showed thyroid tissue (surgeon reported this to me) as I say, she's reluctant to just go in to see if she can locate the offending gland😢 wants the target 🤦♀️.Also seeing as the private surgeon I saw in 2022 was looking for any abnormalities in my neck, I'm pretty sure he'd have seen a mass of 13x12mm in the right thyroid bed🤷♀️.. Its all confusing me🤯
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