He said yes .......sort of .......

Well, we all know that FP is a very cautious and methodical man, but it seems that he dots i's and crosses t's to the nth degree to be confident in making a decision in complex cases such as mine! So I have a kind of result, not quite the one I was hoping for but not the one I was dreading either so ........

It seems to me that he can't quite climb down off the FHH horse! Even though my genetic test was negative it's irking him that my urine calcium:creatinine excretion ratio was extremely low and, even though the results of the CT and venous sampling are highly suggestive of persistent pHPT and another adenoma, he wants me to get  a final expert opinion from his endocrinologist colleague, Dr Jeremy Cox who is based at St Mary's Hospital, and who is purportedly a top drawer endo and expert in parathyroid disease, so that he (Fausto) can be 100% certain of the diagnosis before considering surgery (but he did say he would do the surgery!)  He said if I do have FHH (oh dear God Fausto, get OVER it......) and he operated on me it would be devastating for me, and if he failed to cure me it would be devastating for him, he said. Plus, my surgery would carry a much higher risk of permanent voice damage (or complete loss of....) so he wants to put this extra, final expert opinion in place so he is uber confident in considering the surgery.

So it's a result of sorts, he didn't say no to the surgery, he's willing to do it but needs a bit more convincing from another expert opinion that I don't have FHH - bl**dy hell, this flamin' FHH is still hanging over me like the sword of Damacles! Move over Amanda, seems I might need a seat on the bench...... Strewth! Give me strength.

So on we go ....... deep sigh! Just got to wait for an appointment to see this Dr Jeremy Cox now. If he insists on repeating the FHH test with another three month wait I will lose the plot for sure!

Jasmine x

Sounds like you may be getting somewhere now, just taking the scenic route 

Hopefully this Dr Cox knows his stuff and won't dilly dally around with his decision.

Hang in there Jasmine 

Nelly

Ohhh Jasmine,
I really really can feel your frustration, it just seems to be two steps forward and one step back all the time which I guess is some sort of progress.  I know he is very thorough but the people in the grey area or twilight zone with normal urine calciums seems to cause major potholes on the way.  I know he has to be sure but surely a negative genetic test should clinch it??   Why do all the venous sampling unless he felt it would come back as normal and therefore not warrant further surgery or does a highly likely result for another adenoma then cause another dilemma on how to proceed??  It does not help when you feel so sick all the time and eqch day is a struggle.  At least as you say surgery isn't ruled out but I cannot see what another endo opinion is going to add to the pot.  I hope they don't keep you waiting too long for the endo opinion.  I just want to give you a great big hug and understand what torment and grief this causes.  I can cope with the physical side better than the awful mush of brain I seem to have but the misery of it all is what I find so debilitating.  Some days are better than others but I get so low some days.
Just wishing that things will improve soon for you,
Take care and hugs, Sue x

Oh, my gosh, Jasmine, come back to the US, and I'LL do your surgery myself! Why the heck do they keep harping on FHH when at least 1 more adenoma had been identified?! Let's get this show on the road already!! I'm glad they are being thorough, but holy cow! You poor thing. How much longer do you have to suffer and wait?! It sounds like you're getting closer and closer, it's just taking forever. I keep telling everybody to march on. Heck, I think you must need new combat boots by now!

Audrey

Jeez, what does he want to happen: your recalcitrant adenoma to climb up your vocal chords out of your throat, waving a white flag and clutching a placard saying NO FHH? There's cautious and reluctance to believe the genetic test! I hope Dr Jeremy Cox believes in facts and makes his mind up without dotting more i's and crossing more bleeping t's! This is some scenic route, Jasmine! I'm also feeling the need to give you a big hug and try to relieve your frustration. I heartily wish your *Journey* could quit the windy route and go straight down the hill to the finish line! Take a deep breath and keep going. Wishing you all the luck in the world for a successful visit to Dr Cox in the very near future. 

Much love and LOADS of GBH 

Brigitte xxxx

Hi Jasmine I'm sorry you didn't get the clear cut answer you so needed. FHH is indeed a curse but I don't feel you will be needing the nice warm spot I seem to have left on the FHH bench, I feel that this is a singular spot and I seem to have drawn the short straw.
I can understand him being cautious but b****y hell you have a genetic report saying you are clear surely that is conclusive. 
I'm sending you massive hugs and much love I hope you get that all clear very soon.
Love Amanda xxxx

Oh good grief I do understand the frustration. I do try to understand these doc's position and" the do no harm" is taken seriously, I do like that. No money grabbing. But come on you had the genetic test for crying out loud. My urine calcium came up when I started taking 2000iu of vit D and gave up on the low calcium diet. Not out of range, more mid range of normal. Did he say where he felt the bad boy was located?  Well the best news is our doc's have not given up on us so that is a blessing. Maybe still at the limbo land  café but still moving forward. Love to you Kathi.

Oh my gosh,  I know you have had many symptoms and it doesn't seem like FHH.  I guess he's got to explore everything. 

I hope you don't have to wait too long for an opinion by this endo. 

Keep us posted and keeping our fingers crossed.

 xxx,  Nancy

Hi Jasmine

As frustrating as it is, I think being referred to Dr C is good news for you.  He is MY doctor!   And I think he is pretty fantastic, I am sure you will like him.   He certainly sorted me out and he is definitely one of a very small elite band of expert para Endos in this country.   He is heading the team looking after me and arranged all my recent tests - which have all come back negative for now.  He is very approachable and understanding, easy to talk to and will allow you to take your time with him.

The clinic at St Mary's is like stepping back in time - its in a pretty awful building (Mint Wing) so I wanted to give you a heads up about that as it was a shock when I first visited.   However, as I said to my husband at the time, it could be a grass hut in the jungle for all I cared as long as the medical staff knew what they were doing.   Its chaotic and they usually run about an hour late.   Forget trying to park there, Paddington Station is directly outside.

Dr C is very tall (he just passes under the door jamb) and explained to me that my wrists are as thin as he is tall - an excellent illustration in my view.

Anyway, just to say that you will be in excellent hands.   A special lady indeed with both Mr P and Dr C looking out for you.

Best wishes

Anna

Hi Jasmine,

Dr C sounds nice but I totally share your frustration - how many appts and tests does a lady need to get surgery round here? It wouldn't be so bad if these things took a matter of days but we all know the NHS takes months. 

As Kathi indicated there are things that influence Ca excretion in the urine. Salt and animal protein both greatly increase it and whilst I'd be very cautious to not do anything long-term that would increase my serum Ca or weaken my bones further y'know if I had another (unnecessary) urine test I probably would eat some crisps and steak 6-12hrs beforehand as an experiment. Just saying.

Supposedly they do the ratio thing to counteract dietary stuff like that but so many doctors have been influenced by my overall Ca level that it leads me to believe they don't have the scientific understanding necessary and so I'll totally take advantage of that.

Another genetic test is definitely unnecessary - I'd defintely put my foot down if they start going down that road.

Here's hoping Dr C has a free appt sharpish and can give FP the kick he needs.

Lots of love,
Dee
xxx