supressed parathyroid hormone

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

Hi Rachel

I see what you are saying but I don't have any words of wisdom. I think you just have to let the docs work it out. Your Endo seems to be very good and we know Mr M is on the ball so they will no doubt do whatever needs doing to get you well again.
Try not to worry, it doesn't help and will only make you more miserable, I know its hard belive me. We are here to help where we can so don't be lonely 

Nelly

Hi Nelly
I really appreciate your response. 
It's a difficult one to look at I know. I think this is why they are pondering over it. 
It's the pt hormone that's causing the issues. This is what's making me think they will think surgery won't cure me because if the calcium sensing receptors are all faulty then leaving a half still maybe not regulate things properly. And still want to raise calcium to a higher set point.so I have no idea how they will know what to do, but I'm no doctor. 
Also another worry I have is that they will change my diagnosis too FHH if they don't know what to do (although that's probably not the case ) Because that requires no surgery that's my fear Although that's been ruled out again and again.
If the cinacalcet is improving my labs and making me feel better then surely I can't be left without treatment. Also of I am asked to come off it I am worried about feelling terrible again.
I have read if it is familial isolated hpt then it's could be a sub entity in itself.
trying not to worry but can't help feeling frustrated

Many thanks 
Rachel x

This is weird, Rachel. If you have several calcium and PTH levels, can you put a list of them here so we can have a look at the trend? Mark them up as "before Cinacalcet" and after, and let's see what sort of pattern emerges.

With a calcium of 2.5 the PTH should be in a range of, say, 0 - 2, if the system is working correctly.

Try not to worry (easier said, I know). You have a terrific endo on your side who is trying so hard to help you - that is so wonderful!

Let us have a list of your values to look at.

Love from Tigerlily xxxx

I know it's so confusing !!!
my calcium has always been high apart from the trial of cinacalcet and being on iv fluids twice. It then rose again after 2 days.

Last year heres a few

2.69
2.70 pth 2.2
2.65
2.69
2.71 
2.78 annoyingly the hospital failed to do my pth even though it was requested. 

2.61 pth 2.9
2.64 pth 4.9

Then the trail of cinacalcet november
2.53 pth 1.1
2.50 pth 0.9

Then I felt worse over X mas and into jan
calcium 2.63 pth 1.2
2.63 pth 1.3

Then 60mg of cinacalcet

After 4 days 2.53 pth 1.1

After 11 days 2.37 pth ? Haven't had it back yet but I know it was supressed. 

So I can now kind of predict what's going on but why?
Is it all skewiff because of the cinacalcet or it is possible that unless my pth is hardly produced then my calcium rises even with a tiny movement. 
It seems 60mg of cinacalcet twice a day is keeping it at bay at the moment.
This is what's making me think it something to do with the calcium sensing receptors. 
I think it most likely is 4 gland problem. 
Ahhhh how will they ever work this out :/ 

Rachel x

I'm going to try and squeeze in as many blood tests as possible too monitor it.
However I can't help being negative about all this its like no other labs I've seen I don't know if it's just because of the cinacalcet.  I know all cases present differently but I can't seem to feel positive that anyone will figure this out. 

Oh dear.... having doubts now that I even have this. 
Maybe something else is going on....

Just a late night thought, Rachel - can you copy and paste your readings in the last but one post above over onto the other forum and ask Simon to take a look at them?

And just remind me (and Simon) - have you had an adenoma seen on US or MIBI scan?

C U tomorrow - Love Tigerlily xxxx

Just an update on my latest blood tests. 
This seems to make more sense. This is on the 60mg of cinacalcet
calcium 2.37
pth 1.6

This seems more relative to each Other

Rachel

Well, I'm trying to catch up with you all today, and this thread has me stumped! It doesn't appear to me that the parathyroid glands are the issue here, since the PTH is so low with the high calcium levels. I agree that when the calcium is high, the PTH is supposed to be very low, and yours is, Rachel. Hyperparathyroidism is when the PTH is inappropriately high for the calcium level, and yours isn't. I am wondering if there is another cause for your high calcium. Please work closely with your doctors in trying to resolve the issue. I hope they can determine the cause and get you all patched up!

Audrey

Hi Audrey 
yes its a tricky one I think the cinacalcet is doing all sorts as my parathyroid hormone was never superseded before hand and before I was taking it.

Since doubling the cinacalcet both calcium and pt hormone are normal so it's working now. 
I feel much better. 

So I'm not sure if the cinacalcet is responsible for the low pt hormone. 

My endo still thinks I have a parathyroid problem and says it's not fhh because of the osteopenia and mostly in my forarm. I have had everything else ruled out. 

But who knows anymore I give up... but I'm feeling better.


Rachel xxx

My calcium dropped from 2.63 to 2.37 in 11 days after doubling the medication. 

My whole world has become vibrant and feels new and shiny. My aches and sick feeling have subsided. 

I feel a lot better

Xx

I've also had sarcoidosis ruled out and had X rays. 
Sorry for all the posts I forgot to put some info in

Rachel

Maybe my problems lie elsewhere or it will never be revealed. I guess I was just looking for answers and a quick fix. But perhaps it's not the simple. 

Thanks for all your help take care
Rachel xx

Well, Rachel, at least you are feeling better while the doctors try to figure it all out for you. That's a real plus!

I would think if your parathyroid glands were working normally, your PTH would increase as your calcium decreased, so now I'm even more stumped, since both of your levels decreased with the medication.

Hopefully, before long, they will be able to determine what the problem is and take care of it for you. Good luck!

Audrey

Thanks Audrey.
Now I'm on the higher dose my calcium has come down and pt risen back into the normal range.

Cinacalcet works by making the calcium sensing receptors more sensitive to calcium in the blood. Now I may have got the right dose. My results are now finally normal.

X

Oh, ok, Rachel. I must have gotten things twisted up there. I'm sorry. I'm very glad your levels are both normal now. And since the PTH increased when the calcium decreased, it would appear that the glands are functioning normally. Before you took the medication, your calcium was high, and your PTH was low, right? I'm having trouble keeping up with all of these cases since I've been gone for so long.

Audrey

It's so confusing and I struggle keeping up with things! !

Before I started taking the medication my calcium was high and pt hormone inappropriately high.
2.71 2.78 2.64 2.69
and my parathyroid was never really high but inappropriate. Say 2.9 4.9
I W's then started on the medication which worked for a month then my calcium rose again now it's been doubled and for the first time my calcium is 2.37
in my case it's made things more complicated by having this cinacalcet trial as they had to get the doseage right.
I'm guessing if I didn't have a prathyroid problem taking 60mg if cinacalcet would send my calcium too low.
But at the moment it's stable.
I'm waiting to hear back from my endo now but things take so long xxx

Hi Rachel,
I hope you feel a little better today, I wish things would move faster for you too and I know how hard the waiting is.  Just wanted to say don't ever feel you are on your own, I may not be much use knowledge wise but I know everyone here will always listen.
Take care, Sue
X

Thank you sue

That's so very kind of you
I guess I'm just impatient and like us all want to get it sorted.

I feel much better recently and I have some more blood tests tomorrow. I can tell my Calcium is stable as many things have changed for me over the last few Weeks. I've been more social, slept better, had more energy, not been as grumpy, no aches and pains, feeling sick, weird and woozy, dehydrated ect.
Everything is much brighter.
My dad has has some more blood tests but they didn't do his pth annoyingly
His latest calcium is normal but I can't help thinking a normal working system should stay in a tight range and shouldn't move about too much. Maybe I'm wrong. ... not sure
December his was 2.58
January 2.63
Feb 2.49

Maybe that's normal I'm not sure.

Rachel x

Hi Rachel

Your dad's readings look OK from the fluctuation point of view as serum calcium doesn't normally fluctuate by more than 0.2 units.

But they are still high-in-the-range calcium readings, and if his Vit D level is low and his PTH is more than 1 or 2 then parathyroid disease might be indicated.

See if you can get his GP to order blood tests for calcium, PTH and Vit D from the same blood draw "to rule out a parathyroid disorder as the reason for the high calcium" .

Love from Tigerlily xxxx

Hi Rachel

Long time no hear, how goes things ? have you made any progress ?

Nelly

Hi nelly great to here from you!
Okay well I'm still waiting on my next appointment. My last clinic date was the 3rd of feb. And I recieved my clinic letter a week ago.
I'm not sure what's happening as it said next appointment pending....... at the end of the letter my endo said she would be updating Mr m With regards to surgery. Everything seems to take so long! But I understand that. I think my last clinic letter needs to be read by him etc. ...
I'm a bit confused??
In the mean time since starting the double dose of cinacalcet. I have felt so much better. My calcium was 2.37 then 2.45
I'm not too sure what I'm waiting for or when but I have been phoning the secretary trying to keep on top of thingS.
I had my biochemistry repeated. And my phosphates have risen into more of a mid range and calcium is in mid range. So I hope this is what they are looking for.
I can't help Worrying about my next appointment and when it is!

Thanks for asking
Rachel xxxx

Weren't you going to see Andrew McLaren ? Or did you abandon that ?

I abandoned that for the moment. ... thought it would be best to hang in there a little x