Parathyroid experts?

[Mishka4]

Hi all

I've had recent fluctuating parathyroid results - 10.5, 5.3 and today 6.3 pmol/L (range 1.6-7.5 pmol/L) along with below range vitamin D, calcium and phosphate levels and a Dexa scan showing below average whatever they call the measurement in my hip.

My metabolic bone disease 'expert' says it's nothing to worry about and he's discharged me. My endo doesn't know what to do and I was just wondering if anyone can recommend any parathyroid doctors by PM please (if there are such a thing?!)

I have insurance so going privately is, thankfully, an option. The PTH forums are't working for me at the minute so I'm struggling to find info!

I'm 44 but feeling like I'm about 450, what with all these aches and pains! Thyroid wise I'm feeling pretty good, thyroid S is really working its magic for me and I am very grateful that it seems to suit me.

Thanks in advance

[Mishka4]

Forgot to mention I'm in the Midlands but am very willing to travel!

[bantam12]

If you have high PTH but low calcium it indicates secondary hyperparathyroidism so is caused by something other than parathyroid adenoma.

Could be raising your vitd and calcium intake will be enough but if caused by something like kidney disease then you need further testing.

Our forum is working hyperparathyroid.org.uk

[Mishka4 in reply to bantam12]

Thank you for the reply, I can get onto the forum using your link so that's much appreciated! My kidneys are all fine, I've queried my vitamin D dose with my doc but he is adamant I'm in range so no adjustment is needed. Although my vit D levels are dropping month on month..!!

Thanks again

[bantam12 in reply to Mishka4]

Do you know your calcium, vitd and phosphate levels ?

If your PTH is high there is a reason and there a few possibilities.

There are no parathyroid doctors as such, it comes under endocrinology but many endos will not be experienced with testing methods, reading the results or treating it.

I'm afraid parathyroid problems are even more difficult than thyroid for diagnosis, most of us have had a long battle.

Although I'm not a fan of this American website it does give some useful info, parathyroid.com

Don't give up until you know what is going on.