Hi everyone ❤️

[birkie]

So I have now received my second report from my endo in Liverpool regarding my parathyroid /thyroid results :Parathyroid /calcium.. over range diagnosis (primary hyperparathyroidism)

Thyroid.. T3.. 11.9...over range

TSH.. 0.25.. Suppressed

I explained to her I'd taken my 10mg of thyroid meds at 5am so the test would be usless, but she noted the time laps in gestation of T3 at 5am and blood draw at 11.30..being 6 and a half hours, she wouldn't have expected the T3 level to be 11.9.

She then asked at what time would I take the next 10mg..12.30... So she tried explaining I'd still have a T3 over range when taking the next lot of meds.

OK she thinks I'm either pooling it or my absorbtion is bad, and it's not getting to where it should and is staying in the blood.

So on my report F18 pet chlorine scan this is noted.

Total thyroidectomy noted. Hyperdense nodule of approx 13mm x 12mm noted in right thyroid bed which looks low - grade, uptake on early images which persisted on delayed images.

This May represent thyroid tissue?? Remmnant/recurrent ) in the veiw of limited details available considered review of prior pathology and correlation with USS neck +/- FNH) - low grader symmetrical uptake in the tonsils and posterior nasopharynx is likely inflammatory.

Low grader tracer uptake in subcentimeter bilateral cervical lymph nodes is likely reactive in nature physiology tracer uptake in the pritruitry, saliva glands and liver.

No obvious abnormal focus of tracer uptake identified in the neck or mediastinum. Mild degenerative changes in the vertebrae. COMMENT : parathyroid adenoma cannot be localised on this study.

END.

The endo as said she as diagnosed primary hyperparathyroidism due to blood work and only wants a target of the offending gland so she can go straight to that area, as I have a lot of scar tissue due to full thyroidectomy, she is unsure if the nodule in the thyroid bed is a piece of left over thyroid or indeed a rouge parathyroid gland, futher scans are being sorted for her.

But I'm lost as to why the tracer took up in my tonsils and are marked as inflamation🤷‍♀️

I have no idea what the pritruitry and liver uptake mean 🤦‍♀️

As some members might know I was recently at the eye clinic for what turned out to be clots and inflammation on my optic nerve, could there be a link?

I've been saying to my gp for some time now I think I have an inflammatory problem, but he as ever as ignored me 😠

[SlowDragon Administrator]

Did they test vitamin D, folate, B12 and ferritin levels too?

Keep us posted on what happens next

[birkie in reply to SlowDragon]

Vit D still 43...that was done at Liverpool.. Parathyroid over, calcium over..no B12 or ferrtin or foliate (Liverpool)

But I had some blood done on wed in the eye clinic, I would suspect they would have done a full count, with vitamin /minerals, clotting ect probably did thyroid and parathyroids to🤞 the gentleman assisting the nurse said we are doing a full blood panle, so I'll be getting that printout ASAP.. I'll post when I get it👍

[SlowDragon Administrator in reply to birkie]

Vitamin D…..you’re probably not supposed to supplement with hyperthyroidism?

What did specialist say?

Are you taking and B12 or vitamin B complex?

[birkie in reply to SlowDragon]

Not taking B12.. Only vitamin D as instructed by an endo in Newcastle, but as I explained to him my calcium is to high for a large dose of vitamin D I'm on 1000.Vitamin D is taken in secondary primary hyperparathyroidism, meaning the calcium is at the lower end, they give vitamin D in that instance to increase the calcium, and lower the parathyroid.. again I've tried to take the vitamin D, but again my gut is being effected, I just can't seem to stay on it.. Also it raised my calcium on last bloods🤦‍♀️.. It's a catch 22 situation because the t3 is still giving me diarrhea so taking both gives me even more gut problems, Saturday I was on the toilet all day, and in really bad pain with cramping and inflammation, I honestly just want to stop taking the t3.

But hopefully I'll get some answers on the bloods done on wed in carslile, hopefully they have done B12 ect 🤞I just can't go on like this anymore.

[Hidden in reply to birkie]

Birkie

We’ve spoken before via PM. I’ve had a TT (follicular cancer 2cm x 1 cm) so I’m a fellow traveller.

A couple of questions. Do you have thyroglobulin tested every year as we should do?

How much T3 are you taking at the moment?

When my Parathyroid Hormone tests came back as high, I was told to stop all Vitamin D and Calcium until further notice. They did go down and I then resumed Vitamin D. Matters not resolved though because the whole purpose of the Parathyroid is to control calcium levels - we shouldn’t have to help it out!

In your case, Endo is looking for a Parathyroid Adenoma which would explain high PTH.

I take it you mean choline scan, not chlorine scan? This type of scanning is excellent for looking at parathyroids and finding adenomas which can be hard to diagnosis. As you probably know addnomas are benign and easily removed. Nothing like a TT!

mayoclinic.org/medical-prof...

[birkie in reply to Hidden]

Hi Everywhere 2❤️

Thanks for the reply 🤗 first do I need thyroglobulin tested if I've no thyroid?

When I was diagnosed with graves thyrotoxicosis my antibodies were really high, after thyroidectomy my surgeon told me the antibodies could take up to 2/3 months to leave my body.

I've not been very good since thyroidectomy and have been telling my gp this.

He and the dodos have been chopping and changing my thyroid medication hoping to get a different out come (I have colitis /lactose intolerant and no amount of thyroid medication is helping me😭.

I spoke to my gp about auto immune illness as I felt maby some of my symptoms could be contributing to it,(I feel like I have a low grade fever and sweat constantly with body pain) he totally ignored me and I'm sure I've not had any antibody tests done since my graves diagnosis.

I was on 25mg T3 split 10, 10, 5...but Im honestly struggling with gut issues, the endo I saw in Liverpool recently for primary hyperparathyroidism she done my thyroid bloods and thinks I may be pooling or not absorbing the t3, thus it not getting to where it should then pooling in the blood stream giving a high T3 level

The example was 5am T3 taken 10mg...11.30 blood draw which showed a T3 level of 11.9...range (3.10..6.80) then I'd take my next 10mg at 12.30 thus putting more T3 into my system, it's all gobbledygook to me this pooling ect, she as now taken me down to 20mg and asked me to see my gp about the t3 issue, but it's been impossible to get an appointment 🤷‍♀️

Whats more puzzling is the inflammatory factor that's shown up on the F18 pet scan🤷‍♀️ my gp as this report, I had a call from them yesterday in relation to a query from the endo in Liverpool, she wants my last thyroid bloods sent to her, as I told the receptionist I can't get an appointment to get this done!! So she's just going to send her my July results 🤦‍♀️.. So far my gp as not asked to see me in relation to this report 😠

[Hidden in reply to birkie]

Given everything else which is going on, you should consider the possibility that gut issues are not caused by T3.

[Hidden]

Sorry birkie. My bad. You only need annual thyroglobulin tests if thyroid removed because of cancer.

I’ve had blood tests done at 6/7 hours (unexpected) in an endo clinic. I’d taken 20 mcg T3 and had a bit of a tantrum because I said they’d come out as false highs. Result was T3 of 7 (3 - 6.8) so your result does indicate that T3 is not getting into cells for some reason. This could be connected with high PTH.

Inflammation and gut issues aren’t always related to thyroid. Don’t get too side tracked. Have you had ANA test or any other tests for autoimmune or immunology?

GP sounds typically useless !

Inflammation (on F18 PET scan): infection, autoimmune or malignancy

This link should help:

nature.com/articles/s41598-...

[birkie in reply to Hidden]

The gut issues are that I'm having constant diarrhea and inflammation due to the fillers even the lactose free T3 is giving me problems ( both Roma and teva) it's aggravating my colitis.What's ANA?.. I'm sure I've had no futher auto immune or immunology tests done, as I said I mentioned this to my gp but he just said "you don't have a thyroid now so you won't have auto immune antibodies (nice of him to remember I don't have a thyroid when he treats me with thyroid blood results like I do have one😠)

The inflammatory showed up in my tonsils, posterior nasopharynx, low grade uptake in cervical lymph nodes, physiological tracer uptake in the pritruitry, saliver glands and liver🤷‍♀️... No idea what this means..

[Hidden in reply to birkie]

I despair of GPs. No, of course you won’t have thyroid antibodies but you can have an autoimmune disease.

In my opinion, this needs investigation. You have colitis which is AI and AI diseases do tend to come in pairs.

I think you’re Endo is on correct track but it sounds like it could be a long haul - given that you have a numpty GP

As I’ve said already, inflammation can indicate infection, autoimmune or malignancy. Lots of detective work needed

[birkie in reply to Hidden]

Really all the gps at my surgery are numptys.. In my first report the endo in Liverpool requested a vocal cord test as I've lost my voice again, got it back to normal after thyroidectomy, then parathyroid glands went over active and that's when I started talking like I'd smoked 100 cigs a day😬.. But gp put NO FUTHER ACTION on the letter🤦‍♀️ this second report with all the stuff I've posted, they haven't even contacted me about, I'd really like to know why it says inflammation, and lymph nodes likely reactive in nature 🤷‍♀️ I'm in the dark as usual 👀

[Hidden in reply to birkie]

To be blunt, they’re querying possible malignancy. You need to discuss this with your endo.

[birkie in reply to Hidden]

Not surprised Everywhere2🤷‍♀️ they have been lapse with my health for a long time now... But thank you for telling me that❤️ as no one at my surgery as bothered to contact me.I do know the pet scan can pick up malignancies, I was told that 🤷‍♀️ would you know, if this is a bit of thyroid left over from my thyroidectomy (12x 13 mm) would it pump out any thyroid hormones? Just something I've been wondering about it, as it lit up on the scan🤔

Ps... Endo is calling me on Nov 15th👍

[Hidden in reply to birkie]

It isn’t my place to make such suggestions and I don’t feel comfortable with it - but inflammation indicates one of the three things I’ve mentioned. I’ve really just ‘jigsawed’ all the information you’ve given - but I’m not a doctor

Medics have to keep working on a process of elimination and looking at the big picture.

😍

[birkie in reply to Hidden]

Thank you for the input you have given me❤️, obviously I'll need to get the armour on again and do battle to get my answers of the medical professionals 🤷‍♀️

[Hidden in reply to birkie]

To get the answers you need to ask the questions - very specific questions. Make a list of them all and don’t allow them to sidetrack.

Please let me know how things go 🥰