Seen endo on Monday

The appointment was just okay, he started with yes you have phpt and if I wanted to try Senipar to lower my calcium and try to alleviate some symptoms and try scanning in 6 months. Well I finely hit the roof, I said what happened to the venous sampling. He said well it is invasive and not always right either, he didn't feel that I wanted to go that route but if I was willing to he would order it. I did ask him if the interventional radiologist did a lot of para VS's he told me the whole team there is super great did quite a lot of para VS. He put the order in and told me I should hear in a week about a date. I see endo again on Feb 9 he feel's  he'll have the result of the VS by then. So I'm at the limboland café with Jasmine waiting for a date. This is truly the frist time I felt disappointment in my endo. I pray that the VS does find something or I might end up on Senipar [ not sure I spelled that right] I have no idea what I will do if the VS doesn't pan out. Hugs to all Kathi

Hi kathi, I understand your worries about cinacalcet... i am currently taking it to lower my calcium and supress my pt. It seems to be doing the trick at the moment and luckily I haven't had any side effects. However my case I different to yours I had negative scans not sure if you have had your scans? I am on cinacalcet as a trail too see what happens, I've heard it can make the parathyroids sticky and cause problems though.

I'm not even sure is allowed as a treatment for phpt in the uk I think it's for secondary but not too sure

Rachel xx

Kathi - just remind me - have you had negative scans, too?

Rachel - yes, I've read that about only being used in the UK for secondary, so do keep an eye on any side-effects. Sounds as though you're doing OK though - hope so.

Love from Tigerlily xxxx

Tigerlilly,
I had my latest clinic letter today.
I still have my diagnosis of phpt wasn't sure wether it had been taken away as they decided surgery wasn't an option yet! But phew it's still there. It clergy stated at the end of the letter from my endo if my symptoms are relieved and calcium comes down this is more reason for me to have surgery.

Kathi, it's interesting to see how different endos deal with diagnosis and treatment ect. ...xxx

Fantastic news, Rachel - so glad your phpt diagnosis still stands, and they are not messing you about

Look after yourself and keep us updated.

Love from Tigerlily xxxx

Yes I have had negative scans the only positive was the sestamibi that seen a possible adenoma in my chest. The ct and 2 MRI's could not confirm this so even the sestamibi is in question. I think he wants the adenoma to grow bigger and try the sestamibi again. I forgot to ask if UCSF had the 4D scan, endo always throws me off me game. It also could be possible that I have hyperplasia and that would not show on scans. Endo did say the the venous sampling works out better if a scan has shown a possible adenoma, I didn't ask why.
Rachel I have been following your post. What does that mean about making the parathyroid sticky is that a good thing or bad? xoxo Kathi

Thankyou Tigerlilly!

Kathi, yes hyperplasia wouldn't show on the scans. From reading pth in hyperplasia is all over the place as all parathyroids are overacting. Sorry I'm trying to find a post where I can have a look at your pth and calcium. .. I'm no expert like many on here but I'm trying to educate myself and keep up to date with eveyones case.

The calcium-sensing receptors on the surface of the chief cell of the parathyroid gland is the principal regulator of parathyroid hormone secretion (PTH). Cinacalcet directly lowers parathyroid hormone levels by increasing the sensitivity of the calcium sensing receptors to activation by extracellular calcium, resulting in the inhibition of PTH secretion. The reduction in PTH is associated with a concomitant decrease in serum calcium levels.
I copied and pasted this... haha its not from my knowledge completely.

Im not too sure what my endo meant by sticky, but it's a negative thing making surgery harder whilst on cinacalcet but I'm thinking once of cinacalcet the parathyroids would return to normal. All I know is that it supresses the parathyroid activity in turn lowering calcium, while increasing the calcium sensing receptors.
Complicated! ! all I know it that I don't want to be on it too long !

Xx

Kathi, I'm sorry you're having a hard time, but you are getting somewhere! Hope the venous sampling will be soon so you don't have to wait long. The thing is, if you definitely have pHPT as stated,  why all the messing around in the first place? Did you need all the MRI and CT scans, it just seems you're left suffering for longer. I suppose they are cautious because of the possibility it's in the chest, but all this hanging about isn't much fun for you. I really do sympathise with that. If nothing shows on the VS, I wonder what your next option is. I don't agree with waiting for an adenoma to grow bigger, what a horrible option! I would hope you would at least be offered an exploratory PTH surgery. Best of luck and loads of hugs to cheer you up. 

Rachel, I'm glad you haven't lost your pHPT diagnosis. I hope that the cinacalcet proves the point and you can move forward. I'm not a fan of that way of diagnosing and would not have been happy at going that route myself, but I can see that you weren't given many options. 

I really think some Endos need to learn what it's actually like to live day to day with pHPT! They need to be forced to endure it to understand how their patients cope with it. 

Love and hugs 

Brigitte xxxx

Thank Brigette . Rachel and Tigerlily,

I do feel I am moving forward so that is good. At times my calcium would be 10.3 and 40 pth then move up to 10.7 and pth 99 then last one 11.4 and pth 71 my ionized calcium is always high, but over the last few years my labs bounce around calcium always high pth  in and out of the normal range there for awhile it was stuck in the 40's making things complicated . Endo said if sestamibi is right the adenoma is deep in the chest so a neck incision may not be possible . So he would like to be sure of where it is before I  end up with 2 different surgeries. He said he sends a lot of people to the surgeon baste on labs even if scans are negative. I guess I am a little tricky.