The Parathyroid Forum

[NancyMI]

Well to borrow one of your words, I feel that I have been "fobbed off" to some extent by a friend. After making the comment that I feel as though time is running out she just said I shouldn't be thinking like that. I do feel that time is running out. I am feeling sicker and sicker. I don't see it turning around unless I have surgery.
With me, my calcium levels haven't been extremely high but the PTH levels just keep going up and up. It started out at 49 12 mths ago and then it went to 62, 72 and then 100.
A scan has not revealed anything yet. I have read that if there is multi gland disease, or a cyst it may not show up on a scan.
I just don't think that discounting someone's concerns is a good thing. I will have to remember in the future not to do this to someone,

Nancy

[kathy]

Nancy - I'm so sorry you are experiencing all of this and wish you could get a firm diagnosis. Too bad you can't come to UTSW!

Friends and family truly did not understand what I was going through.

[NancyMI]

Kathy,
Thank you. I do understand that unless someone has looked at parathyroid disease and read about it then they probably won't understand.
I don't like having a chronic problem. I don't want to be a complainer.

Did you see Shelby Holt? I think I remember that.

Thanks for responding and for understanding.

Nancy

[NancyMI]

Kathy,
I can understand why or that your daughter is a resident in psychiatry. Like mother like daugher. You took the time and effort to respond to me with understanding and I appreciate it.

Nancy, Mi

[LoriO]

Oh Nancy, that is horrible that things just seem to be going no where with a diagnosis for you. This damn disease is so debilitating yet people just don't get how crappy you feel when you look so normal.

Have you thought about switching to a different Dr? The fact that your PTH numbers keep going up just screams something is wrong!

[NancyMI]

Lori,
I have thought about seeing someone else but I may give him one more try. i believe he has said that he makes a diagnosis based on scans but not all adenoma's will show on a scan and if it's a cyst it does not show on a scan. I was diagnosed with osteoporosis 2 years ago and it is getting worse according to the dexa that I had 2 mths ago. No one has commented on this. Maybe if I were 80 it would be believable but I am not and do not smoke and work 40 hours a week.
I have read how some with very high calciums don't have any symptoms. I would like to be like that but I feel sick everyday and it's not a good feeling.

Thanks for responding Lori.

Nancy

[kathy]

Thanks, Nancy

I hope you can find relief soon.