supressed parathyroid hormone

First topic message reminder :

Hi everyone I'm looking for some info and knowledge and as always this is the best place for help.

Okay so from the trail of cinacalcet it has been revealed that my calcium will not stay in the normal range unless my parathyroid hormone is below 1.0
I think this expalins why my parathyroid hormone has always been in the normal range. 

So for example calcium 2.50 (2.20 - 2.60)
Parathyroid 0.8 (1.6 - 6.9)

Unfortunately the 30mg of cinacalcet stopped keeping my pt hormone below 1.0 and it rose slowly to 1.2 and 1.3
my calcium went up again to 2.63

I was then started on 60mg and calcium came down to 2.53 and then 2.37

I think this is why doctors are struggling to get to the bottom of what's going on. 
In my opinion if I do have famiial isolated hpt then it could be 4 faulty calcium sensing receptors that are always trying to increase my calcium.
This would make sense if it is a 4 gland problem because of my age and potential hereditary issues. 
Ahhhh my brain hurts !!!!
What's puzzling me is the low pt hormone even a tiny increase raises my calcium. 
Unfortunately I'm worried my doctors haven't thought of this and are off down the FHH route. .. which has been ruled out time and time again and even a chemist has double checked the calcium creatinne ratio. ... which was borderline high at 0.49 surely that shows too my calcium being excreted. 
I guess I'm on  bit of a downer at the moment and if I do have familial isolated hpt or familial phpt then I'm worried as it's quite unusual. 
I feel very frustrated lonely and isolated and worried that I will be stuck on cinacalcet indefinitely. 
Thankyou for reading what's ticking over in my brain

Rachel xxx

I agree, no point in burning your bridges then jumping into an unknown situation. I read Simon's opinion of Mr Morgan ( who he has no knowledge of  ) and disagree entirely, he is a very experienced endo surgeon, he did an excellent job with my very complicated neck anatomy !

Things may be taking time because all hospitals have been struggling with too many patients, I know lots of surgical dates have been cancelled so there is bound to be a backlog with appts. I can't even get an outpatients urology appt let alone a date for the procedure .

Hopefully you will hear something soon but good job you are feeling better 

Do keep us posted,

Nelly

Gosh !! Yes I have heard that too.I really don't mind waiting when I feel okay. The cinacalcet has changed my life ! I know it sounds odd. But I can tell where my calcium is without a blood test most of the time haha. I think I was most comfortable at 2.38 but it's on the way back up I think. In 2 weeks it was 2.45. Cinacalcet only seems to work for about a month then the dosage needs altering.
my endo wrote in my clinic letter about my dad. And she said she wanted to make a firm point in her letter that it is not fhh! !! I think because of my age some other endo's almost assumed it was that.
So we shall see. I keep waiting for a phone call or a letter with another date! . I wonder what mr m would make of all this new info he probably thinks what have I got on my hands here. I'm worried no surgeon will want to touch me because I'm a difficult case.

I hope your well xx

Hi Rach, I am glad to hear the cinacalcet is making you feel better. I have been on it for only a week and I think I am the only one taking a lose dose of a half a pill a day. I know doc did this because I have nausea issue's anyway, but so far I can't see a difference. Some days seem ok but that would happen even without cinacalcet. I feel he has me on to low of dose. So maybe it will take longer then a week to feel a difference. I know a lot of peeps say they feel good on the meds but often know when its time to up the dose.

Hi kathi great to hear from You. how come you are taking it too? Sorry as I can't remember if you have already had surgery or waiting for it. I'm worried as it's not supposed to be a long term Soulution.
I have my bloods check every fee weeks To see where everything is. The lowest dose only worked for a month for me but the double dose seems to be keeping things at bay

Xx

I am a complicated mess. To make a long story short I am pre op and the sestamibi scan showed a adenoma deep in the chest area so my endo feels that a surgeon would not be able to do the normal neck type of surgery and that a possible open chest or a robot type of surgery would be indicated he has tried his best to confirm this chest adenoma with other scans and even venous sampling which did hit high on the azygos vein which is in the chest area but the level of pth was not as high as they would like it to be when you have venous sampling. So he put me on cinacalcet for awhile and then more scans to try and confirm the location so I don't have a failed surgery. Hey if the cinacalcet will help me feel better bring it on. I hope you get some answers soon.      Kathi