Fathers calcium and parathyroid labs

First topic message reminder :

I decided to ask my parents to have their calcium and parathyroid checked as I was concerned about my dad as he complain of the same symptoms and has done for years.  He is on blood pressure meds and has bad joints fatigue and all of the symptoms. 

I found this very interesting
these are my mum's results

Calcium 2.34 
parathyroid 2.6

These are my dad's

Calcium 2.65
parathyroid 3.2 

He has been asked to go back to his gp to discuss this and his gp is aware of my situation.  
His parathyroid hormone seems innapropriately high for the cacalcium level just like mine.

Now I'm worried what to do and if to inform my endo. .. or will this put a spanner in the works with my case or will this info help my case.

I'm thinking about an isolated famillial hyperparathyroidism problem.  

I'm stuck on what to do for the best. ... and if this will stop my process for surgery as I have an appointment with the surgeon on the 27th of Jan.

Have I opened a whole can of worms or will this help my case for surgery better.

In the mean time my dad isn't keen on persuing hpt problem as he brushes things under the carpet but I think this may have been his problem for a long time.


Any recommendations or advice in what to do would be great.

Happy new year to everyone
lots of love Rachel xx

Rachel did you go to your appt today ? If so how did it go ? 

Nelly

Hi Nelly
that's so nice of you to remember thank you

Had a few things going on and my appointment with Mr m was cancelled. I presented my dad's labs to my endo via the phone and also his vitamin d levels of 27.

She has pretty much confirmed a problem with him so I think I can see where this is all heading. So I'm off to see my endo again to discuss this a week today on the 3rd.
I had my suspicions that this info would delay things but I know it's for the best.

I'm a little confused because I'm desperate to see Mr m  ow they have all confirmed my case. But I guess my dad's case is the missing puzzle piece they were pondering over maybe. 
In the mean time my dose on cinacalcet has been doubled as other hormone is rising and so is calcium. 

I'm not sure what this all means for me now and I'm petrified of being stuck like this.... of they decide this is hereditary or familial and decide it's a 4 gland case potentially I'm worried they won't operate.... surely this can't happen!! 

I really appreciate you asking 

Rachel xxx

Whoops *pt hormone. 

I know my endo will do what's best and she said there is no use going to Mr m again until they have every piece of supporting info to help my case and decide what to do.

What if they do nothing !!!! I'm worrying so much.

Xx

Oh dear, more hanging about for you. Maybe they will suggest genetic testing next to confirm fhh, but as you are so symptomatic it would seem likely that surgery will have to happen at some point.

I know how difficult it is just bumbling along from one appt to the next and not getting much further but you have to stay positive, you will get it sorted.

I'm off to jolly old Southmead tomorrow, oh joy !

Nelly

I askedo my endo about FFH in my dad and she said she didn't think so as his calcium was 2.5 in 2012 and now it's 2.58 then 2.63

I've had FFH ruled out and the diagnosis of Phpt so maybe they would change it to familial Phpt or isolated hpt? ?

I was assuming that if it's a hereditary issue then knowing this before surgery could indicate removing 3 and a half?

Yes it seems to take ages for every appointment to come around.  So much waiting 

Hope your trip to southmead isn't to stressful tomorrow aside from the parking !!! 

Rachel

It seems your endo is doing her job and she sounds interested in your case so fingers crossed she will do what's best.

Trips to Southmead are usually quite stressful, we have over an hours drive to get there then the battle to park begins although it hasn't been too bad the last few times, I'm there tomorrow for my kidney stones to be blasted and apparently will be there for about 4 hours so we will be heading home in the rush hour  not looking forward to it.

Nelly

Thanks Nelly
luckily I get the bus so no worries about parking but have taken the car before and it was a disaster. Some people choose to park in the residential area or south mead to avoid the problems. 

I'm very greatfull of my endo she's done alot for me. I'm a little puzzled at what this means for me if my dad has a pt problem too if it's a Coincidence or related.  

Im hoping after my next clinic and we have discussed this then she may put me forward to Mr. M again.  
I'm guessing if there is a link then it will help decide what to do with regards to surgery.

I remember her saying on the phone phpt can run in families and they have been questioning if I was born with this. She also said when I asked about surgery it was more likely to be a 4 gland problem

Rachel

When I first saw Mr M he went through the 4 gland scenario which was a possibility if my scans had been negative. I think you are in safe hands with him when you finally get round to it.

I wouldn't worry too much about the how's and why's, it is what it is and you have to concentrate on yourself and getting fixed asap. As always we are here to lend an ear whenever needed.

Nelly

good luck for today Nelly, 

I hope it's not too stressful for you! Rush hour in Bristol is horrendous on top of parking issues 

Take care 
Rachel

Good luck with your endo appt tomorrow Rachel, let us know how it goes 

Nelly

Hi Nelly,  

That's really kind of you thank you! I know I won't sleep much tonight, I always get in a bit of a bother the night before and end up worrying.
I have written a list down of the main things I want to ask.  But I have too many questions.  

Rachel x

And good luck from me as well tomorrow, hope you get some answers, thinking of you
Take care, Sue

Many thanks Sue, 

I've been following your posts and hope you gets your answers soon too. I am also worrying that I will have to have genetic tests and the wait will seem like forever. It ma mot be necessary but the thought of having to wait horrifies me !

Xx

Yes, Rachel - good luck tomorrow. It must have felt like ages waiting for this appointment, and now it's here.

Keep us posted - Love from Tigerlily xxxx

How did it go Rachel?

J x

Hi jasmine thanks for asking.  I posted another post under latest endo appointment and wrote a little on there.
my endo is still going with this she thinks when my calcium is more stable my oestrogen has risen enough so that I've had a period for the first time in over a year. She re checked my levels and has upped my dose of cinacalcet to 60mg as 30 wasn't holding it down. 

If her theory is correct it's more evidence to take to the surgeon. 
However I'm worried about not really getting anywhere
also my thyroid function is normal again off thyroxine when my calcium is stable. 

It's all so complicated and not straight forward. 

Thanks for your post xxx