Hyperparathyroidism

[swedishblue11]

Have just had my first Endocrinologist appointment regarding high calcium levels found in my blood. She's referred me on for ultrasounds on parathyroids and kidneys, to see a surgeon, and to see a specialist for more tests regarding bone thinning (not that I've ever been told that I have). I was so taken aback by the prognosis - that I probably need surgery to remove a parathyroid - that when she asked had I any questions, I said NO. I can't believe I forgot to ask her IF this also was causing my chronic fatigue too. I had an subarachnoid haemorrhage several years ago so obviously I suffer fatigue from this. Would be pleased to hear from anyone who has undergone this and did you suffer cfs beforehand? How is it you feel now? I have a brain injury so cfs is common, but it would be great to hear if some degree of it could be relieved by surgery.

[Clutter]

Swedishblue11,

High calcium and high parathyroid hormone indicate primary hyperparathyroidism which is usually caused by a benign tumour on one or more of the four parathyroid glands. Surgery is the usual treatment for primary hyperparathyroidism.

Secondary hyperparathyroidism usually presents with normal to high calcium and high parathyroid hormone and is usually secondary to kidney disease.

You'll get more support and help from hyperparathyroid.org.uk/

[bantam12 in reply to Clutter]

Thanks for the mention Clutter 😀

[Clutter in reply to bantam12]

Bantam12,

My pleasure

[swedishblue11 in reply to Clutter]

thank you so much Clutter, will check the link now.

[bantam12]

Hi, we have all the info and members with experience on hyperparathyroid.org.uk

Happy to answer any questions.

[swedishblue11 in reply to bantam12]

Hi, this is extraordinary to have two replies in minutes. Thanks so much. I'm really concerned about my chronic fatigue at the moment as well as I'm really feeling unwell. Have had a busy couple of days with not resting, but now can't get off the sofa. Bantam, have you had this condition? Does it cause massive fatigue do you know? I have fatigue issues from my brain injury but this feels unrelated to that.

[bantam12]

Yes I have, had surgery about 3 years ago and now run the parathyroid forum. Do you have your calcium and PTH results ? It's the high calcium that makes you feel unwell and fatigue is one of the worst of many possible symptoms and they do run along the same lines as thyroid symptoms.

You must see an Endo who is experienced in parathyroid disease, many aren't, and should you need surgery then a very experienced surgeon is vital to the success of the op, again many have not done enough hpth ops to gain the expertise.

Your next step is to find out if it's primary or secondary hpth, if it's primary there is the option of medication if surgery is not appropriate but for now you must have the further tests done then go from there, as I say loads to read on the forum, happy to help if you need advice.

[swedishblue11 in reply to bantam12]

Hi, no results to hand but I will phone the surgery tomorrow, and then post. My Endo Consultant was a fairly young woman...not sure I trust, who works out of Basingstoke/Winchester. How do I go about finding a top Endo and Surgeon, would you suggest? Do you know anyone in Southampton? The Consultant I saw was referring me. She mentioned I would probably need surgery. What tests show whether its primary or secondary? I'm having ultrasounds on parathyroid and kidneys, will this reveal type? I'm going back to the website to read up more. Thanks very much for the information.

[bantam12 in reply to swedishblue11]

Finding an Endo is tricky, you need one with an interest in parathyroid but that's no guarantee, I went privately, chose carefully but my Endo was still a challenge ! We have a list of surgeons on the forum but again it's a bit pot luck unless there is a personal recommendation. One of our members had surgery at Southampton hospital and it wasn't a good experience !

Blood tests and scans will show which you have, if renal disease is present then secondary hpth is likely but if an adenoma shows in scans it's likely primary. There is also a gentic form but that's a whole different ball game and quite complicated.

Ideally you would have a sestamibi scan along with the ultrasound but adenomas don't always show up on both, the kidney scan is to look for stones, a problem caused by the high calcium, a dexa scan will show if your bones are affected.

I wouldn't get to far ahead of yourself yet, it typically takes a while for a definite diagnosis so you have time to do your research, first thing is to find out if it is hpth and if so what is causing it.

Happy reading !

[swedishblue11 in reply to bantam12]

O'h dear, thanks Bantam. I think its time to make an appointment to see my gp again, or perhaps a different one at the surgery. I wonder if its possible to request surgery in a London Hospital.

I wouldn't want to go anywhere near Southampton Hospital. Having worked and been a patient there before, I wasn't impressed with the level of service! I've got a feeling it would be best to go to a London specialist hospital, or Bristol. I'll wait to have all the tests performed and then inform my Endo.

[bantam12]

As you are already seeing an Endo wait and see how it goes with her, she may be absolutely fine, she's ordered the tests so take it one step at a time. No point in changing unless it's really necessary. If/when you get to the stage of needing surgery then you can decide where you want to go but you have a way to go before you get to that stage, you need that diagnosis first !

[bossbird]

hi i think i have parathyroid problems i feel unwell my calcium level is raised, i get all of the symptoms listed plus awful pain either side (more on one side of my neck) plus soar throat going to endo on Saturday but my PTH level is ok?

[bantam12]

What is your adjusted calcium level ? and are you taking vitd ?

You can have hpth with a normal pth but it will be more difficult getting a diagnosis, you need to see an Endo who has lots of experience in parathyroid disease, most do not.

hyperparathyroid.org.uk

[ITYFIALMCTT in reply to bantam12]

bantam12 - I'm a little confused about hyperparathyroidism test results - is it serum calcium that people need to look at with their PTH, vitamin D level etc. (as per the NPC) or is it the adjusted calcium level, please? (Interested for a sibling.)

[bantam12]

Adjusted calcium is the one to look at.