High parathyroid levels - any connection with Paget's

[Moggie]

High All,

I'm new to this site so please be gentle with me.lol.

My family has a history of Paget's Disease going back four generations and it now looks possible that I am the next generation.

I have high parathyroid levels and am due to calcium/creatine ratio test to determine how much calcium I am/am not loosing. On researching how the tests works and why they do it I came across the Paget's connection. The Paget's connection has been popping up for a while now due to high ALP levels and now, possible, high parathyroid levels plus putting my family history into the equation.

I have done some research and there does seem to be a slim connection with high parathyroid levels and Paget's.

I must just add that I also have an underactive thyroid.

Any thought would be appreciated.

Thanks

Moggie x

[superdog843]

I am not sure of the calcium levels, but ALP can mean many things. Have you had a complete blood count test or "CBC" ? It would list many results. But, ALP is an indicator. What is your #? Over 120? Over 5 years of testing, I was never over 120. However, in the USA, we do a "BSAP" test called Bone specific alkaline phosphatase." The only time they ever did that and I was 2.5x over the high end of the normal range. If that is high our out or range, a bone scan is done to determine what is causing the rise...which is almost always pagets.

[Moggie in reply to superdog843]

Thanks for your reply.

Maybe I should have given you a bit more history about tests etc.

Over the last 6 months I have had almost every test under the sun. I am hypothyroid and my heart was palping/skipping beats due to the medication so my endocrinologist sent me for heart scans, bone scan (only the hip and lower spine is scanned), coeliac tests, adrenal tests plus so many blood tests that I thought I would need a transfusion. Lol.

As I have said, my parathyroid level was high at 9.8 (range 0.95 - 5.7) and my ALP levels were 316 (range 80 - 260), this wasn't the first high result I had had with my ALP as it has slowly been creeping up over the last year. I asked for a calcium/creatine ratio test to try and determine what was happening, as I thought it was all thyroid related, but on researching what the test was I found it was also used to diagnose Paget's.

My mum has Paget's, her sister has Paget's, my nan had Paget's and my great nan had Paget's (and bone deformity can be traced back even further) so, as you can see, there is a long family history.

I wont see my endocrinologist until August and will then be asking for a referral to a specialist (don't know which type of consultant deals with Paget's) for any further tests that may be needed but I want to find a link between Paget's and high parathyroid levels to convince my endo that this is the course to take. I have found several papers/studies on this and it seems inconclusive as some say it is linked and some say it isn't but what I do know is that my body is repeatedly calling for calcium even though my calcium levels are mid range and no matter how much high powered VitD (I have had two courses of 50,000iu daily supplemented in the last year) I am prescribed within months my VitD levels are low again.

Sorry but I cant understand your question - What is your #?

Thanks again for your help.

Moggie x

[Hidden]

Hello Moggie

Just reading your question and I am sorry that I am not qualified to answer your medical questions being just another ordinary Paget Sufferer myself. I am sure that PA has or will be able to answer the questions for you in a professinal manner. If not they will find someone who can! However, I found your email really interesting and it is nice to speak to yet another person who has Pagets disease of bone. I did have a problem with my thyroid levels at one point in time which seems to have levelled out now thank goodness without having treatment for it. So whether there was connection with the Paget's disease of bone is a mystery. All the best and take care, Mary (Hythe)

[Moggie in reply to Hidden]

Hi Mary,

Thanks so much for the feedback - its only sharing with other sufferers that the whole picture starts to become clearer isn't it. The more I research and ask questions on another healthunlocked site for thyroid sufferers the more I am beginning to realise that this well be Paget's. What is the standard treatment, if you don't mind me asking.

Moggie x

[Hidden]

Hi Moggie,

The treatment I am at present receiving to bring down my AP levels is Risedronate in tablet form. I have had APD intravenous drip in previous years too. Have you looked on the website of Paget.org.uk. There is a very comprehensive explanation there of treatment options and it is a very helpful and professional site. As you say - it is good to share information with other Paget sufferers as there are more of us than you would at first imagine.

All the best and take care,

Mary

[Moggie in reply to Hidden]

Thanks Mary for the info - will certainly be looking at the site.

Best wishes

Moggie x

[Moggie in reply to Hidden]

H Mary,

Jut thought you would like to know that I visited paget.org.uk and phoned the nurses number who answered a lot of my questions for me, the main one being that yes there is a link to high parathyroid levels and Paget's, so thank you very much for the link.

Moggie x

[lotsoissues]

I also have high parathyroid levels

[TSanders02251960]

I have Pagets Disease and Hyperparathyroidism, I have read that there is a slight relationship with Pagets Disease.