Experience of parathyroid problems ?

[Junep]

Is there anyone out there who had experience of hyperparathyroidism at all ? If so I’d be very grateful of any information you have .

[bantam12]

Yes I had hyperparathyroidism and surgery to cure it.

[Junep in reply to bantam12]

Thank you . Could I ask where you had it done and which surgeon performed the operation ?

[bantam12 in reply to Junep]

I had my surgery in Bristol, I see you haven't been diagnosed yet so you have a long road ahead before thinking about surgery. You need to have VitD, Calcium and parathyroid all tested at the same time and it's a time critical test so has to be got to the lab within a very short time. If those results indicate a problem then you need an ultrasound and sestamibi scan. It's vital if you need to see an Endo that you choose one who has experience with pth disease as many don't ! and then if you need surgery again you must find a surgeon who does regular parathyroid surgery. But your first step is to get the bloods done.

[Junep in reply to bantam12]

Yes bloods being done soon , however there’s a hold up with blood tests in my area as there’s something they’ve run out of something so have to wait , which is very frustrating .

Maybe I could get them done privately if need be . I do find it strange that 20 years ago I had another hair mineral test done with the same results of excessively high calcium levels . So after that amount of time would I not have noticed something , though I’ve struggled from then onwards with exhaustion / tiredness , but had to live with it as docs all said there was nothing wrong with me .

I have to say I can remember feeling ‘ normal ‘ , but it does seem a lifetime ago .

[bantam12 in reply to Junep]

I wouldn't go much on results of hair test, you need bloods and 24 hour urine calcium tests. It's not unusual for diagnosis to take many years if ever, levels fluctuate anyway so tests are repeated over time to see the trend. If you've had it 20 years and you only have tiredness/ exhaustion (which could be many things) your body is coping, possibly your levels are only mildly raised. Do you know your calcium level ?

The current issue with blood tests is a warehouse problem at Roche so there is a temporary holdup, probably won't make any difference going private as the issue is affecting all tests.

[helvella Administrator in reply to bantam12]

At least some shampoos and hair conditioners contain calcium in various forms - sometimes significant amounts as in calcium compounds being listed ingredients.

Obviously we don't know the products Junep has been using but worth a thought.

This paper is slightly interesting - especially as it says that is cannot explain some of the relatively elevated calcium levels found.

ncbi.nlm.nih.gov/pmc/articl...

[bantam12 in reply to Junep]

Just had a quick look at hair testing and apparently results can be misleading as they can show levels 10 times higher than they actually are, so what looks like a high calcium in hair analysis can indicate a low calcium level in blood !

[Junep in reply to bantam12]

I had the analysis done through a homeopath , she is a Doctor also practices naturopathic medicine . She thinks they were high but said I would need blood tests . So hopefully the situation with Roche get sorted soon . Forgot to say I’m having awful headaches too , my go reckons that’s a parathyroid symptom . I’m just plain confused .

[bantam12 in reply to Junep]

Headache isn't a symptom of hpth but doesn't mean it can't ever be. As hair analysis is unreliable I wouldn't read anything into the results yet, if you'd had hpth for 20 years you would have more severe symptoms by now especially if your calcium is as high as you suspect, anything much over 3 and you would be suffering badly and heading to hospital !

[Junep in reply to bantam12]

Right , well there’s no way I can interpret the results , they don’t seem to relate to any charts I’ve seen . So whether the ranges differ from the blood ones I have no idea .

[bantam12 in reply to Junep]

The range I found is 200-2800 mcg per gram of hair and various things can effect the result such as previous hair treatments, periodontal disease, drinking hard water. Personally I think it's all a bit iffy !

[Junep in reply to bantam12]

My results which have no ranges , are

Normal. 42.

My result. 155

So I can’t see any ranges to compare them to ?

[bantam12 in reply to Junep]

Without the range it's meaningless, no point in worrying about this, wait and see what proper testing shows.

[Junep in reply to bantam12]

Yes that’s the only thing I can do .

[t3rr in reply to Junep]

I had hyperparathyroidism, and like Bantam had adenoma removed and felt fine after. Bantams advice is spot on, wait until you get your blood tests done and go from there.

[Vps1980 in reply to bantam12]

Sorry to butt in but do you know if calcium channel blockers will mess with my blood test results? I’m seeing Endo tomorrow, have all the symptoms of Hyperparathyroidism and struggling to function xx

[bantam12 in reply to Vps1980]

This may help

pubmed.ncbi.nlm.nih.gov/224...

[Vps1980 in reply to bantam12]

Thank you xx