High calcium and hyperparathyroidism

[ScaredButUnavoidable]

Has anyone suffered with this?

After recent treatment for a Vitamin D deficiency it’s actually come to light that it’s likely I have hyperparathyroidism, which has been detected via blood tests picking up high calcium levels.

I’ve got an upcoming phone consultation with
my GP and it’s likely I will need to be referred to an Endocrinologist but I’m just interested to hear from anyone else who may have been through the same?

Thank you.

Yes I had this. If you do have hyperparathyroidism then the only cure is surgery to remove the offending parathyroid gland.
I had no idea until I was referred to endocrinology and I went to the appointment expecting to be told to change my diet or take some supplements but no, the first thing I was told was I would need surgery.
This was before any scans or anything to actually confirm the adenoma.
There’s a great Facebook group where you can find loads of info and support
Hyperparathyroid UK Action4Change
so many others have struggled to get diagnosis or surgery. Despite my relatively quick diagnosis I then waited a year for surgery

Yes, I also had hyperparathyroidism (primary), and had a parathyroidectomy to remove an enlarged gland/adenoma last September. The symptoms came on as a slow creep, and I have no idea how long I actually had it for, but for me the majority of symptoms resolved almost immediately following the operation. Do not accept a ‘watch and wait’ approach from the endo, and if they say your calcium levels aren’t high enough to warrant an op, it’s rubbish. Even if you are apparently symptomless, there will be damage going on to your bones and kidneys amongst other things, all the while that you do not have the operation. I second the website mentioned above, and the related FB page, I found them invaluable and there is so much medically sound information and advice on there from others who have experienced it too. It’s a horrible condition, and the best thing to do is get it sorted asap - go privately if possible, if it looks like you will have long delays on the NHS.

A high calcium level was first documented when I was in A&E last July for an unrelated incident but it wasn’t followed up and I wasn’t even aware of it until about a month ago.

It was last October I contacted my GP as I just didn’t feel right. My symptoms including:

Sleeping difficulties
Extreme fatigue / lack of energy
Aching muscles / joint pains
Lack of motivation
Nausea
Extreme anxiety / low in mood
Tingling sensations in my feet / muscle twitching
Inability to focus / concentrate

I haven’t been able to work for 6 months now because of how unwell and run down I constantly feel.

I had to wait over 6 weeks for blood tests which highlighted the low vitamin D and it was assumed the cause of all my symptoms. I had so many blood tests and everything came back normal except the Vitamin D. My calcium level was also normal but I have since been told that low Vitamin D levels can make calcium levels drop too and mask underlying problems. I was put on a course of high dose supplementations.

I did feel better after the supplementation course and when my follow up bloods were done (calcium check only) the GP suspected the hypercalcaemia was just an acute reaction to my body suddenly having been flooded with vitamin D. She did mention hyperparathyroidosm and said she’d check my Calcium again in another two weeks to see if the levels had normalised.

Those bloods were done at the start of the week and again, I had a full MOT where everything was checked, and again everything came back normal except the high calcium.

My Parathyroid hormone level came back as at the very high end of normal but from what I’ve read, this is an abnormal level as with hypercalceamia my PTH level should be very low/borderline below normal levels in order to try and correct the hypercacaemia. So tje fact that it’s very high indicates that my body is overproducing the hormone.

Exactly - Calcium and PTH should exist in a suppressive relationship, when one is higher the other should be lower - like a see-saw. When both are raised, even within their ‘normal’ ranges, it’s indicative of a problem. Your symptoms are very typical unfortunately, but the good news is that they should lift following successful surgery. When they do, you’ll likely realise that you were feeling ill in many other ways that hadn’t even registered!