Endo appointment tomorrow afternoon

Hi All
I have my long awaited Endo appointment tomorrow and have this grey cloud hanging over my head that I will come away from it in the same position as I am at the moment, Limbo Land, that is unless she has the dreaded FHH results (I doubt it as Jasmine had hers done before me and she hasn't heard yet)
Does anyone have any suggestions of points I should raise with her that I haven't already been over, by letter, email and speaking with her useless Registrar.
I'm sitting here with brain fog trying to come up with some new points, apart from confirming Pituitary results.
Thanks everyone.
Amanda xxxx

Hi Amanda,
First of all I am wishing you all the luck in the world that tomorrows appointment goes well.  I will cross fingers, toes and everything!  I totally understand how you must be feeling and I hope you get your FHH results soon, but even then it is not a definitive diagnostic tool.  I know how frustrating it is, especially when there seems to be no end in sight and the symptoms continue to make our lives miserable, they just do not seem to be able to understand that.  I think I would ask what the plan of action is?  Is it more watch and wait and if so for how long and for what reasons?  See what the answers are and that would give you an idea of what is going on in their heads and see if their ideas are set in stone.  Have you had your bloods done recently?  I would also ask that they be tested more frequently.  I handed my 24 hr in yesterday so am hoping and praying too that the urine calcium has gone up a bit from last time.  I see endo on the 16th and I guess will be feeling just like you now and anxious to get off this silly FHH chair.
Good Luck and hugs Sue x

Forgive me, Amanda, if I don't recall correctly what is going on for you, but did this endo take it upon themselves to check for FHH with you? And were they checking all pit hormones to rule out acromegaly as your Growth Hormone level was deemed a bit high?

And was this the "last chance saloon" for them to come up with something intelligible as a diagnosis and explanation for your continued high calcium since having an adenoma removed by MdaK - before you take yourself off to FP?

I expect they have checked Ca and PTH recently, so you will get those results back at the appointment, I assume?

And was it this endo that you on board originally when you were referred to MdaK in the first place?

One word replies will be OK, my Dear, just to put my fogged up brain in the picture! And then hopefully I might come up with some suggestions as to what to ask.

I know what you mean about sitting there wondering what to ask this time. You tend to get a bit "stuck" with all of this. I know I do.

Love and hugs meantime from Tigerlily xxxx

Hi Sue thanks for your thoughts, yes I think I need to see if she has any plan for me (I have a feeling it's wait to see FHH results as I'm sure she is pinning everything on that and the kudos it will give her!!)
Bloods done 13/8/14 range 2.1-2.55 calcium 2.68 corrected 2.60 PTH 3.9 very similar to what they were before op.
Previous bloods 2.73 corrected 2.65 PTH 3.8 and 2.70 corrected 2.62 PTH 4.4.
Good luck with your 24hr urine I hope it's nice and high. Also good luck  with your Endo appt and you get the all clear from FHH.
Love Amanda xxxx

Hi Tigerlily
Yes to FHH she liked the idea right from the start !!!
Yes to Pit checking I have to confirm if what results she sent me were giving all clear as I think it seems to show.
Yes last chance she has said she will refer to Hammersmith if FHH negative.
I've put latest bloods on message above.
Different Endo to first op as she was never convinced I had one until I had it removed !!!!
Thanks soooooo much.
Love Amanda xxxx

Hi Amanda - thanks for the reminders!

Your Ca and PTH levels are in the right (i.e. incorrect) relationship, methinks, to point to another adenoma. Am I right in thinking that, if the system is working normally and you are adenoma-free, then with Ca levels that high in their range the PTH should be around 1-2 max?

Have either you or Jasmine come up with any information as to what the PTH level would be in FHH?
I'm thinking, that it's OK to say your urine Ca is low and your blood Ca is high, therefore it's FHH - but that doesn't seem to take into account the PTH level.

So what I would be looking at is  (a) confirmation that it's not a pituitary problem, (b) the latest Ca and PTH levels if you've had more done since 13.08, (c) possibly asking for another 24-hr urine Ca test to see if the previous low urine Ca was just a blip (or have you already checked that out by doing another 24-hr urine test?) (d) the FHH result to come back, which might be the case, and (e) I would be asking her the awkward question of what the PTH level does when it actually is FHH (I'm thinking it would be low low low, because of the high Calcium - and yours is not low).

Phew, brain hurts - but tell me what you think, Amanda.

Love from Tigerlily xxxx

http://www.parathyroid.com/FHH.htm

I expect you've seen these pages from www.parathyroid.com, Amanda, but they make interesting reading.

Love Tigerlily xxxx

Hi Tigerlily
Yes I've looked at those pages many times !!! X
I would have thought my PTH would be lower it has been in the 4's several times since op and 5.87 as well.
I can't find any info on what PTH levels are in FHH.
THOSE POINTS ARE BRILLIANT I'd got a few of them but I'm glad you also have thought of them and more.
Thank you so much I really appreciate your help.
Love Amanda xxxx

My pleasure, Amanda - on the parathyroid.com pages, there is an interesting comparison chart for FHH and HPT and it looks as if FHH doesn't have any of the the nasty symptoms that HPT has - and it also says that you would have had high Calcium all your life, as would your siblings, and this is not the case with you, is it?

I would have thought your PTH would have been lower - 1-2 max.

I would take those FHH pages with me, keep them in my bag, and then present her with them at the end of your consult - I usually say they are for "bedtime reading" and "might be of interest".

I expect you've already done this once, Amanda, but I would do it again! If I think of anything else, I'll post again.

Love from Tigerlily xxxx

Thanks Tigerlily
My Sister has had her calcium tested and was told it was well within normal range, alas she didn't find out number and despite me asking several times she hasn't got actual results.
I will print them off and take them with me to present to her. I'll let you know how she responds !!!!  
Love Amanda xxxx

I read a paper recently which described PTH levels as within normal range or mildly elevated in FHH and I remember it making me feel very gloomy. I'll dig it out and post the link. Apart from that I concur with Tigerlily's points which are very well made.

Good luck Amanda, I can understand you feeling a bit jittery and wanting to make sure all bases are covered as there's a lot riding on this appointment and you've been kept hanging for far too long, bless you! You never know, she may have your CaSR results as other labs may be turning them round quicker. Been 10 weeks waiting now for mine (Oxford lab) and it's driving me nuts....! 

Got everything crossed for you kiddo ......

Jasmine x

Here it is:    http://www.clinmedres.org/content/11/4/219.full


Have cut and paste this bit from the paper: Patients with FHH typically present with hypercalcemia, normal to mildly elevated PTH, and hypocalciuria.

J x

Thanks Jasmine 
I've got everything X'd
Love Amanda xxxx

Amanda good luck tomorrow.  What I understood from my endo when he was thinking I may have fhh was my pth was mostly normal or just slightly out of range. I did have one in the beginning of all this mess that was 101 and he kept saying well on a old lab you showed me had that 101pth, the rest are normal or just above. My last pth was 99. so that seemed to make him happy. Sometimes the numbers game makes one a little crazy. I have had low normal 24 hour urine tests also. Also cal/cr  <00.5 which is half of <00.1  I was a challenge for this poor endo. Keep your chin up. we will get there.

That Kathi
I'll let you all know how it goes.
Love Amanda xxxx

Best of luck Amanda. I hope you're fired up with all your questions and facts and that your Endo has useful information for you. 

Massive hugs and lots of love 
Brigitte xxxx

Thanks Brigitte 
GBH to you.
Love Amanda xxxx

Hope it goes well xx