Results of my scan

[birkie]

Hi everyone 💓

As many on here may be aware I've been having a lot of health problems with both thyroid and parathyroid.

I had a full thyroidectomy in 2019 and are struggling tremendously with the thyroid drugs, in that they are giving me bad gut and stomach issues, this is ongoing hopefully I will be speaking to a gp in September when she returns from leave.

I had the chlorine pet scan on Aug 8th 2023 at Liverpool for my parathyroid glands, I have just had the call back from the endocrinologist (a lovely lady, makes a change to find a good endo today❤️)

She as confirmed 2 parathyroid glands have lit up, and one anomaly behind my neck bone (doesn't know what that is yet!, She needs to contact the specialist who performed the scan to acitain what this could be he is on leave at the moment so she is contacting me in 2 weeks time.

She also confirmed my blood test she performed showed primary hyperparathyroidism 👍 along with 2 in 2020 which showed normocalcemic hyperparathyroidism.

But she also mentioned my T3.. I didn't know she would be doing a full thyroid count.. So I just took my 10mg that morning at 5am (train out to Liverpool was 5.30am) as I was having nothing to eat I wasn't bothered about running to the toilet with diarrhea, and I only took the 10mg.

She noted I had the bloods done at 11.15am, T3 showed over range (11.4) range.. 3.10..6.80) my TSH was 0.05..range.. 0.30...4.50) she immediately said I was over medicating myself, I explained that I'd taken my T3 meds that morning 5am because I was unaware she was doing a thyroid panel.

I told her my last thyroid bloods done in July 2023 were TSH.. 1.77....T3...5.4).

She noted that was very interesting, and she knows I'm having gut/stomach issues with the drug!

But told me to decrease the T3 and increase the T4.. 😂 Forgive me for laughing) I explained I was not on T4 only T3, as I had gut/stomach issues and the endo put me on T3 only because my T3 level was dire.

She was alarmed I was not taking any T4😯

She then went on to say "10mg taken at 5am you had blood taken at 11.15 and your T3 was 11.4 TSH 0.05 I think you may be hypersensitive to the drug"

I explained I'm splitting it, I was on 25mg which gave the July reading, but I have to either come of it or decrease it, I came of for 5 days and all gut/stomach issues resolved, went back on at 20mg split and all issues have returned.

She is now going to look into maby my system being to sensitive to both T4, T3🤷‍♀️

So I'll look forward to her interpretation of this.

But good news on the parathyroid issue, looks like another neck op, if it's safe enough for her to rummage around after full thyroidectomy 👍

[Brightness14]

I had two parathyroid placed back into the top of my shoulders and the other two place into the two of my arm. I don't have problems with these they started working about one week after my thyroidectomy. Your lady seems to be slightly out of touch.

[birkie in reply to Brightness14]

Mine show over active.. , blood tests confirm it.. PTH over range calcium over range, they have lit up on the pet scan showing over activity, hyperplasia, meaning more than one as gone rouge.If yours give you no problems then you don't have a parathyroid problem all the parathyroids do is regulate calcium, that's there only job.

[Brightness14 in reply to birkie]

I know what they do and sorry yours have gone wrong, I wonder why they would do that is that what they are trying to find out which one so they can remove it?

[birkie in reply to Brightness14]

Here's a shock, I was actually diagnosed with primary hyperparathyroidism in march 2004, but put on watch n wait... Beats me what they were waiting for.. Gone on to develop kidney stones, ostiopeania which by now is probably ostioporosis🤦‍♀️ calcification in most joints and the LAD in my heart, lost most of my teeth all because my body was leaching calcium into my blood stream from my bones.😠Then specialist said in 2005 "ho you have chronic fatigue syndrome, fibro and ME.. This illness is often mistaken for primary hyperparathyroidism, the parathyroid surgeon in Oxford said I've probably had this parathyroid condition since 2004...and I know what you mean about gps... My gp nearly killed me in 2019 when I went into thyroid storm, I was in a short coma.. I honestly thought I'd died😯 I had no recollection of how I got to the hospital and I eventually came out of it a day later, the hospital doc saying I'd never be as lucky again.. My t4 was 100 TSH undetectable... I wanted to punch my ussles gp🥊

[Brightness14 in reply to birkie]

You have my permission punch ahead. Talk about neglect it's horrific. When my gallbladder was removed back in 2006 it was chock full of calcium stones but a different reason to you. Mine was very low Vitamin D which I have corrected. You were lucky to survive. My mothers eldest sister died with it but that was back in the 1930's. I was adopted and never knew anything about my birth family until the 90's when I discovered many had thyroid problems. Mine never started until 2014. What you need for Christmas is a Punchbag.

[Regenallotment Ambassador]

well done you finding all that out 👏

do I remember right that you funded this investigation privately? Hopefully the NHS can pick this up now for you.

explains why the standard treatment doesn’t suit you doesn’t it.

🌱

[birkie in reply to Regenallotment]

Hi

The only thing that was privately funded was the trip to bambary just outside Oxford to see Mr khan my lovely son paid.

Mr khan did the ultrasound scan which picked up the parathyroid on the left side, he recommended I have the chlorine pet scan in Liverpool, but I couldn't fund that so he sent the report to my gp who totally ignored it.

Mr khan sent it in Nov last year, I waited for his response but it never came so I inquired at reception about the report only to be fobbed of the receptionist saying no report as come here.

I fought right through Dec then went back in January after the Christmas holidays.

Again receptionist saying no such report exsists😠

I contacted Mr khan's secretary who assured me the report had be sent on Nov 25th 2022.

Back I go to gps, only to be met by an utterly empty surgery apparently my gp was retiring and we were being moved into another surgery😠 love the fact we were never informed of this🤷‍♀️ so with the move I got fobbed off again.

I eventually got an appointment in the new surgery, with guess who... My gp that retired, apparently he was doing a couple of days in this surgery, he eventually saw the report and smuggly said "ho it's probably a peice of thyroid left over from your thyroidectomy 😠

Belive me it's been a fight as he refused to refer me, I had to go over his head to another gp who looked over all the blood work and report from Mr khan and referred me herself.

Also between 2020 when my pth and calcium went over range the NHS would do nothing about it, saying we'll just keep an eye on you, which they never did, I had to fight to get blood work done and when they did it they always missed either the PTH out or the calcium... You can't test for primary or normocalcemic hyperparathyroidism by missing out key blood work.

I feel I've gone 10 rounds with Mike tyson😂 but at least I'm there now and it's only taken 3 years, probably normal for the nhs at this point in time😂

[Brightness14]

I have just read your journey and just to say good for you, like me you keep on going, what a struggle. I lost the sight in one eye because of my GP also nearly lost a kidney. Anyway I hope things will improve for you now without a thyroid it's bad enough. Good Luck

[birkie in reply to Brightness14]

I hope your OK, 💗goodness what are gps like, I went blind in my right eye saw the eye specialist at my local town he sent me right up to my surgery, first gp was great got me to hospital it was a large clot at the back of my eye, second gp was usless he treated me like I'd been poked in the eye🙄I hope your recovering 💓 we have to look after ourselves today because gps dont🙄