Has anyone got Pagets disease

[jojomac23]

I have an underactive thyroid and for the last few years I have had high alkaline phosphatase in my blood. They always thought that was because I had low vitamin D

I was given vitamin D supplements but they never increased my vitamin d level,

I finally decided to take sublingual vit d plus vitamin k and my vitamin d levels finally became normal, but my alkaline phospahatase is still high

My liver blood test are normal so now they are thinking the raised levels of alkaline phosphatase might be caused by Pagets disease

I have also recently been dizzy and had spells of vertigo

Any advice would be appreciated

[1jay]

Hello,My father had Pagets disease for many years, as did an uncle so I think it might run in families. My brother has his levels checked regularly. Also, I seem to remember reading there may be a link to otosclerosis which I have in one ear (as well as tinnitus). Both conditions are about bones over growing so it makes some sense I guess. There are organisations online in UK and US which give more information but you’ve probably found those in your researches. My father died age 85 of osteosarcoma which apparently a very, very small percentage of people with Pagets can go on to develop. I don’t say this to worry you and I’m sorry if it does, but I do wish I had known of the possible connection before my dad died so his bone cancer could have been caught earlier. I stress he did live a long and active life even with Pagets. I hope my post has helped rather than stressed. Good luck with pursuing a definite diagnosis.