Interpretation of latest report on abnormalities in thyroid bed after total thyroidectomy in 2019 🤔

[birkie]

Hi everyone ❤️Well I've now received a full report on my F18 pet scan and FNA (date.. Nov 29th 23.)

Full thyroidectomy in 2019 due to graves thyrotoxicosis (thyroid storm)

REPORT:

Cytology MDT 29.11.23 PET choline CT identified area on thyroid cartridge also seen on US (looks benign) FNB shows non neoplastic thyroid tissue... Plan is no definitive need to remove midline thyroid tissue.

abnormalities are seen in the right thyroid bed, some small normal / reactive nodes are seen in the cervical chains in levels ll/lll

Thyroid remnant in thyroid bed and in thyroglossal tract, please look at areas indicate by pet chlorine scan - if you find something like a parathyroid - please FNAC and send for PTH.. (my PTH on June 22nd was 7.4..range.. (1.6..6.90)...cal..(2.65 adj to 2.61) diagnosis PRIMARY HYPERPARATHYROIDISM.

There is a focal area of tissue to the right of the mid line above the thyroid bed, measuring (14 x 7 x 21mm) which corresponds to the area of increased activity on the recent PET scan.

No abnormalities are seen in the thyroid bed. 🤷‍♀️ Just said above.. Abnormalities seen in the right thyroid bed🤦‍♀️

OK this report appears to be very different form the one I received on Nov 15th 23.

REPORT:

hyperdense nodule of approx (13 x 12mm noted in the right thyroid bed (CT slice 54) which shows low grade uptake on early images which persists on delayed images.

This may represent thyroid tissue remnant/recurrent) in veiw of limited details available consider review of prior pathological and correlation with USS neck - FNA.

Low grader symmetrical uptake in tonsils and posterior nasopharynx is likely inflammatory in nature, low grade tracer uptake in subcentimeter bilateral cervical lymph nodes is likely reactive in nature.

Physiological tracer uptake in the pritruitry, saliva glands and liver.

OK members I'm due to see the endocrinologist (diabetes specialist🙄) on Dec 27th as many members will know I'm struggling tremendously with all thyroid medication I've been put on, mainly due to stomach and gut issues, I've got plenty of questions for the endo related to these F18 pet scan and US scan, mainly why didn't this mass of (14 x 7 x21) show up in Nov 22 when I had the US scan done privately at bambary 🤷‍♀️ pretty sure the surgeon would have found it, he found the 6/7node no problem 🤷‍♀️.

Is there anything else I should be asking the endo on the 27th.

Thank you to anyone who replies to me, because honestly I'm lost😔

[Gingernut44]

I’m so sorry you’re going through this nonsense. If the Endo you’re seeing on 27 December is a diabetes specialist will he know how to interpret your scan details? Can you send a copy of your scan report to the parathyroid specialist? You certainly need someone who knows what they’re doing to look at it.

[birkie in reply to Gingernut44]

Actually the report is from a parathyroid surgeon at Liverpool, I've been under her since June last year, she diagnosed phpt through my bloods, and symptoms.. Kidney stones, ostiopeania, kidney function (not good) calcification in most joints and heart, now had the second eye stroke in sep🤦‍♀️ she feels the mass of thyroid tissue doesn't require removal, eventho there could be a para gland hiding in there as both my calcium and parathyroid hormone are over range.I was supposed to have had FULL thyroidectomy as I had graves thyrotoxicosis 🤦‍♀️

the private appointment with the other parathyroid surgeon in bambary (who referd me to this nhs parathyroid surgeon in Liverpool ) only found the one nodule on the left, nothing on the right, which is interesting, I'm sure he'd have found it, with it being bigger than the nodule of 6/7..🤷‍♀️, I'm going to contact his secretary to ask for the US scan results I had in Nov 22 with him.

And pass on the F18 pet scan results.. See what he thinks, because I just know this endo I'm seeing will have no idea what I'm talking about, she as for the past 2 years denied I have a parathyroid problem 😠

Be interesting to see what she thinks about the mass of (14 x 7 x 21) could it be producing thyroid hormone? Could I have graves again? Because I'm sweating bad, irratated, insomnia much like I was when hyperthyroid 🤷‍♀️

[Gingernut44 in reply to birkie]

Good luck with your upcoming appointment, I hope you get some answers. Perhaps some additional graves antibody testing might shine a light, who knows.

[FallingInReverse]

Not an expert at all in any way, but just looking at the 2 reports above #1 on Nov 15th and one in Nov 29th 2023.

And then in your comment you talk about a private one done?

Is that a 3rd one? You refer to it as “Nov 22” but not sure if it’s NOV 2022 or Nov 22, 2023.

[birkie in reply to FallingInReverse]

Yeah my first appointment on Nov 20th 2022 was private, as this endo I'm seeing on Dec 27th as repeatedly said I don't have a parathyroid problem.This private surgeon found the 6/7mm nodule on the left side, as I said didn't mention the 12 x 7 x 21mm on the right side 🤷‍♀️ I'm pretty sure this mass could not have been there in 2022.

I couldn't afford to go private so he referred me bk to gp and after a fight I got an appointment at Liverpool, as I said the F18 scan flagged up the mass in the right thyroid bed, uptake in that area, had FNA that identified it as thyroid tissue (full thyroidectomy, graves thyrotoxicosis 🤷‍♀️) so surprised to find out I have thyroid tissue in the right thyroid bed.. Especially as my surgeon told me I needed the whole thyroid removed for thyrotoxicosis 🤷‍♀️

[FallingInReverse]

Just based on the reports at face value (ie, me not deeply understanding their meaning but just comparing the words/terms) - don’t both the Nov 2023 ones indicate issues in the right side of the thyroid area? So that’s consistent ? The 13 x 12 mass and the 14 x 7 x 21 size difference is not insignificant but still small. Are they definitely distinct and different?

Also - abnormalities noted “above” the thyroid bed, appears indeed none IN the thyroid bed?

And if the private scan was a year ago, (again logically, not contextually) then there are certainly masses that can grow from nothing to the size of a blueberry/grape in a year’s time.

I’m asking questions vs giving answers - just dissecting the question and reports you’ve shared as a logic experiment. Looking at it like one of those “spot the difference” logic puzzles even if I don’t know what the words mean. I know you’re puzzling through it too.

Also, I feel for you! Wishing you all the clarity and wisdom you need for your next appointment.

[birkie in reply to FallingInReverse]

they got the 13x 12 mass from the F18 pet scan on Aug 8th 2023 , it changed after the FNA when the specialist measured the mass during the scan on 8th Nov 2023Yes both 2023 US scan/ F18 pet)both indicate thyroid remnant in thyroid bed and in thyroglossal tract, please look at areas indicated by pet chlorine scan if you find something like a parathyroid - please FNAC and send for PTH levels.. (my level is raised at (7.4).

There is a focal area of tissue to the right of mid line above the thyroid bed measuring (14 x 7 x21) sorry I put 12 it's 14🤦‍♀️which corresponds to the area of increased activity on the recent pet scan.

Correction.. It actually says NO abnormalities in the right thyroid bed.. The NO is on another page 🤦‍♀️.

But on the 8th Aug 2023 report it clearly says hyperdense nodule of approx 13 x 12mm noted in the right thyroid bed 🤷‍♀️(ct slice 54) which shows low grade uptake on early images and delayed images, this may represent thyroid??

Obviously the size of the mass as been assessed by US scan on 8th Nov by specialist who did the FNA and ammended it to the (14 x 7 x 21) but again this mass never showed up in nov 2022.

So I can't work out why it says in Aug 2023 hyperdense nodule in right thyroid bed, then on the nov 8th report it says, to the mid line ABOVE the right thyroid bed.. Now this Nov 8th report could be an ammended report although it doesn't state that, if I'm reading both Aug 8th,nov 8th..one says in right thyroid bed, and the other says mid line above the right thyroid bed🤯 my brain is well and truly broken 😂🧠 but I will seek input from the private parathyroid surgeon on these scans and the masses..

I'm due to have the 4D CT scan in Feb so I can only hope something comes of that👍

But thank you for trying to help me, it's much appreciated believe me❤️

[FallingInReverse]

Also - did the end Nov scanner have the mid Nov scan as reference?

The end Nov report feels like a follows on the findings of the mid Nov one?

[birkie]

The Nov 2022 report by the private surgeon found the 6/7mm nodule on the left by US scan, he did a thorough examination, nothing about the (12 x7 x21) mass on the left, although did say the 6/7mm nodule could be a parathyroid gland.

This mass (12 x 7 x21) showed a low grade uptake on the F18 pet chlorine scan, in turn I had to have the FNA on Nov 8th 2023 with US scan to determine what the mass was, thyroid /parathyroid, it also said "looks benign" The specialist had no problem locating it, found almost immediately.

You make a good point about the US scan done on Nov 20th 2022, and the one done Nov 2023) if this mass didn't show up on the Nov 2022 US scan presumably it wasn't there, so as it grown within the year? 🤷‍♀️.

Something I want to ask the private surgeon who did the 2022 scan, it's obviously popped up from somewhere 🤔

[Stills]

I don’t grasp any of this as I’m at the sub clinical stage but I’m sending love and support xxx

[birkie in reply to Stills]

Are u subclinical thyroid or parathyroid if you don't mind me asking 🤔 because endocrinologist know little of thyroid conditions but even less of parathyroid conditions 🤦‍♀️

[Stills in reply to birkie]

Sub clinical hypothyroidism.

I have a chronic auto inflammatory rheumatoid disease.

I’m undergoing cancer elimination tests .

I’m unwell.

I fight on.

[FallingInReverse]

The 4D certainly holds out hope!

And one must leave open the possibility that things can pop up and change in a year.

As for all those other left/right midline/above line inconsistencies… oh, good luck!

When I got a scan I was frustrated because the person doing the scanning (I’m in the US) was allowed to explain anything to me. They weren’t “qualified” to interpret, only to scan.

As they were doing it, I was trying to imagine what was where, and if I could see anything from the outside. She wouldn’t tell me anything though and I’m stuck with those report words on a page vs a helpful picture.

Good luck keep us posted!

[birkie in reply to FallingInReverse]

Im in the UK, and the specialist doing the FNA US just said ho there it is now let's get the needle in.. 😲 I nearly had a fit when I saw it😂 but it wasn't that bad, but he came bk for a second go, and I just thought ho god let this be over🙏