Just had my endo phone me to say my calcium level was high she said my parathyroid glands were probably the cause. She was surprised I was in hospital with kidney stones in June last year and also having osteoporosis. I've never had a bone density scan I'm 58 and in the menupause. She wants to see me and is trying to organise an appointment for me for more bloods and urine tests... I'm wondering if anyone on here would know if I had antibodies left in my body after my graves diagnosis (I have no thyroid now taken out in May last year) could I be attacking my parathyroid glands....??????
Thanks ❤️❤️❤️
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birkie
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Parathyroids are not connected to thyroid issues, the usual reason for high calcium is a parathyroid adenoma, you need calcium and pararthyroid tested at the same time and if they are both high then a sestamibi scan to locate the adenoma which will then need to be removed.
I had hyperparathiyroidism in 2004 my doctor took a blood test after 7 weeks of saying I had a kidney infection that's when he came to see me to say I had hyperparathiyroidism he sent me to a endo who did a six wait n watch approach they did bloods again and just said my levels had returned to normal and that was that... My surgeon who took my thiyroid out said my parathyroid glands looked OK... 🤔
Drs often take a watch and wait approach which is totally ridiculous as levels will go up and down so if they catch them when they are better they assume there isn't a problem, this is why it typically takes many years to get a diagnosis and surgery to correct the problem.
If you have high calcium and high parathyroid you have hyperparathyroidism and need surgery.
No I did purchase some vitamin D but unfortunately it fell in to my waist basket and I must have thrown it out because I've not been able to find it for over a month.. I had hyperparathiyroidism in 2004 my gp mistook it for a kidney infection after 7 weeks he took blood my calcium levels were high I was sent to an endo who did a six week watch n wait took more bloods they came back as normal levels n that was that... 🤔
I have hypoparathyroidism and although my knowledge is limited (or rather my brain function is) i did read that in some cases your body can produce pth antibodies which can affect production.... sorry don't have the studies i read 😖 or can't find them.
Sorry for the late reply but I've been felling very unwell for the last 2 days tremors, shaking feeling a bit sick had sharp pains in the left side of my kneck raging thirst and peeing a lot.. 😢 No energy whatsoever. I thought perhaps I was attacking my parathyroid glands intermittently because I've had bouts of not feeling right for 8/9 months now as I said my thyroid was removed in May last year.. Surgeon said my parathyroid glands looked OK.... I had kidney stones in June last year and was admitted to hospital where my calcium was high again but my surgeon didn't seem bothered about the calcium being high.. Then it went back to normal and now it's high again... I'm hoping my endo gets me my app soon I'm in bed at the moment as I feel totally exhausted and nauseated also I've been checking my pee it's looks like a snowglobe all kinda white flakes floating about in their.... 🤔🤔
How do you feel having this? I was diagnosed as hyperparathiyroidism in 2004 but as I said nothing came of it just wait n see approach... 🤔🤔
I had TT last year and only then was my low PTH mentioned, however it had been low for a year prior to surgery (private testing) it has taken me a year and a half to get this investigated (had consultation on friday with calcium and thyca specialist)
Been fobbed off by oncologist and 2 other endocrinologists for 2 years so its such a relief to have soneone that asked all the right questions (ask being the operative word, they usually talk at!)
He wants to check and see if perhaps its an auto immune issue causing my parathyroids to function intermittently.
(Been asking for that for a long time)
Sorry can't rememeber whole thread and whats already been said.... and i just forgot what i was about to write grrrrr.
Sorry for butting in but just had to comment. I had a TT 9 years ago lost 3 of my 4 parathyroid glands, Ive been left with permanent hypoparathyroidism. I had to learn the hard way, with repeated episodes of tetany, low calcium makes you feel dreadful and must be taken very seriously.
A thyroid specialist is no good for this, thyroid and parathyroid are entirely different things. You need a calcium disorder specialist, the hypopara website can help you find one.
After been passed from one thyroid doctor to the next and remaining ill, the final straw was the day I was told, to “ have a glass of milk” when symptoms came on.
I found an excellent calcium disorder doctor, who keeps me in much better health as far as this goes.
You need well controlled calcium and vitamin D, you need vit D to absorb calcium and it needs to be prescription meds. Supplementing yourself is not a good idea. Check ups at the least every six months or earlier dependent on how you feel.
I found a doctor via hypopara site went to my gp told him thats who I wanted to see.
From being very ill with this to its barely noticable most days, and not had a calcium crash in years, life changing
Hi were you replying to me? I said i now have a calcium specialist, its taken me 1.5yrs to get him though.
I am on supplements, alfacalcidol and calcichews and have been since TT last jan, i am aware of the parathyroids and difference to thyroids!
My concerns are that they did not monitor my levels properly, nor were they interested in my historic low pth... almost as if having thyca and surgery was the only possible reason. I've waited 7months for this referal and had to be very strong in my letters to them, eventually mentioning medical negligence... that did the trick.. they choose to look at things with blinkers and pass off most of my issues as 'cancer anxiety' ... no dr, its my lack of confidence in you!
They managed to overlook my anaemia for last 7months aswell so i rest my case.
Mine is actually hyperparathiyroidism to much calcium endo noted 2 last blood test 3 months apart as having raised calcium levels and my PTH is raised to I'm doing a 24hour urine test tomorrow for calcium in the urine.. I already had hyperparathiyroidism in 2004 I told my endo this but nothing much as come of it.. I've also put a request in to see my medical records so I can see for myself what happened at that time because then I knew nothing of thyroid stuff and just did what the endo suggested which was a wait and see approach.. 😠
Well at the moment I'm in bed with a sore throat and total fatigue I've been having weird pains in my throat the last couple of days like sharp aching pains.. I spoke to my endos secretary on Friday and she has noted my PTH is raised at the moment my endos waiting on my 24hour urine test which I'm doing tomorrow... Like u i mentioned the auto immune thing as having graves is also auto immune but she's not responded to that question Typical!!
I also have colitis, ostio and rhumertoid arthritis😠
It's such a tragedy that this goes on, meanwhile our lives are disappearing before our very eyes.
My biggest fear is becoming so far gone i can no longer advocate for myself.... my cognitive abilities have been declining rapidly the last 2 years, i had to give up my business as i just couldn't cope... i don't really trust myself with any responsibility for fear of making silly mistakes (brain is mashed potato)
I have made sure i have directly emailed/written to both endocrinologists and kept a paper trail of my repeated requests for comprehensive testing, even specifying which tests etc... for the most part i have seemingly been ignored... their correspondence which i am cc'd into usually says something like.."she feels we are missing something" then they fail to investigate.
If possible you should ask for a referal to someone specialising in calcium disorders.... record your requests aswell. I'm not proud to say it but I am considering legal action for a catalogue of errors, it's gross medical negligence to allow a patient to suffer when you are begging for help.
I told my last endocrinologist he should be ashamed of himself, failing to treat me properly and impacting my life negatively! Allowing me to leave his office in a state and telling me he will see me in a few months. Anyway you get the picture.... i wish you all the power in the world, don't give up.
Thanks for your reply in this last few months it has been hell to try to get anywhere with GPS and endos.. I know we are fighting a virus and its been awful but their are also people out their with other conditions to that need treating we can't just be brushed aside because of a virus but that's what's happend the last gp I saw noted my tremors and was conserned as this should not be happening, I'm only on 20mg of T3 and nothing else, he request a emergency app with an endo I received the app through the post only to have it cancelled a week later. so I had to have a phone consultation instead a lot of good that was I'm still not much further ahead in seeing a professional I'm doing the 24hour urine test today see what comes of that but I'm really a bit annoyed as my endo knows my PTH is raised so something is going on.. I've requested to look at my medical records for myself and like you I have had a catalogue of errors in diagnosing me and as for a wait and see approach well that's irresponsible.. And like you my endo said I will see you in clinic in 6 months.. Well no you won't because if I do not receive any further investigation in to my rased calcium and PTH levels then I will be speaking to my solicitor for advice.. If I felt well I wouldn't complain but I feel awful and have no real quality of life at the moment. I can guarantee if a gp or endo felt as bad as we do they would do everything to feel better no stone would go unturned.. Its disgraceful the way we as thyroid sufferes are treated its about time this was changed.. 😠😠😠
I hope you get somewhere in this thyroid jungle ❤️
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