Update ........

Advanced warning, this is a long one........ You might recall that FP wanted me to get one more expert endo opinion to be 100% certain of the diagnosis, and definitely ruling out FHH, before finally deciding on surgery, and he referred me to his colleague, Dr Jeremy Cox? Here is a summary of the outcome of what was an excellent appointment:

Well what a wonderful man and truly inspiring doctor and endo Jeremy Cox is. The outcome of the meeting (which lasted a marathon hour and a half just in consultation alone) wasn't as straight forward 'one way or another' as I expected, but I feel very cared for and heard -  in my humble opinion he and Fausto clearly are the dream team!

He's quite clear about the diagnosis, the science won the day, definitely persistent pHPT and he's ruled out FHH completely (thank God!) and what clinched that was the fact that at the time of my two 24 hour urine collections no-one had thought to tell me to stop my bendrofluomethiazide (until Miles Levy spotted it and immediately took me off it) and what I learned from JC is that thiazides actually inhibit urinary excretion of calcium which is why mine was so low, indicating FHH, but it's probably what has protected me from getting kidney stones, so in a way that's a good thing, just wasted three miserable months of my life waiting for a genetics test that was never going to be positive for FHH, if only someone had joined up the dots about the thiazide. No mud being flung at FP of course, why would he know the intricacies of that, being a surgeon, and why he has justified, in my eyes, a referral for JC's opinion.

So, the dilemma is in deciding if it is worth the huge risk to my one remaining functional laryngeal nerve, vocal chords and airway in doing the surgery. There's a possibility that I could have the surgery and not feel any better, as we know that some don't, so would it be worth taking that risk? The only way to find out if I will feel better with lower calcium is to lower it artificially and see if I feel better, if yes then we can say the benefit of surgery is worth the risk, if no then why put myself through the surgery with the associated risks if removing the adenoma and thereby reducing my calcium doesn't actually make me feel better.  I told him that I worry about the potentially life limiting complications of untreated pHPT, and that maybe even if surgery didn't make me feel any better surely it would be worth it just to eliminate those risks and protect my life expectancy, and he actually gave me some hope by saying that he can take me under his wing and treat all those complications on an individual basis 'under his one roof' so to speak, to help prevent them getting worse. Something new though - he detected a slight heart murmur in my aortic valve which has a correlation with prolonged elevation of PTH - boo, hiss! This is very new as I had a cardiac MIBI last summer and it wasn't detected then. Deep sigh ......!

So the plan is to have a full and complete work up with him to identify any complications of the disease and evaluate the level of damage already incurred, which will comprise a three point bone density scan, CT of kidneys for evidence of stones as I've had un-followed up renal colic, we know about the heart disease already so nothing to be done there, bloods including prolactin and gastrin to see if we need genetics for MEN, theeeeeeen........I'm going in for the day to have an IV infusion of a bisphosphonate drug called pamidronate; this brings the blood calcium down and the effect of this lasts for up to three months when, in long term treatment it would be repeated, but this is a short term measure for me to see if I feel better when my calcium is low, and help us to make an informed decision on the surgery, which JC tells me FP is willing to do as long as FHH is definitely ruled out - which it now is. We discussed Cinacalcet for the same effect but he's not a huge fan and prefers the IV pamidronate route as this slows down the leeching of calcium from the bones and therefore helps to protect them in the meantime, and reduces bone pain, whereas Cinacalcet simply acts on the calcium receptor on the parathyroid glands.

So yesterday I had a call from St Mary's radiology dept - who are being fabulous in trying to organise everything in one day at JC's request - I'm going back on Monday for a day of: urology CT, X-rays of thorax and lumbar spine, 3 point DEXA scan, US of neck and chest (I've already had positive MIBIs, 4D CT, and venous sampling, as you know), then when the timings for these are firmed up I will attend the day ward for a batch of bloods including prolactin and gastrin.

I think that's all - I learned so much from JC, he's a brilliant endo, a gentle and compassionate man, and what he doesn't know about parathyroid disease you could write on a postage stamp! Plus - he's an advocate of early surgery regardless of age, which is brilliant! He's a respecter of quality of life and is keen to ensure the right decision is made for me, and if surgery is ruled out he will keep me in his service and look after me and do all he can to manage all the individual factors of the disease individually to help me feel better and stay well, and if I do have surgery he is keen to still keep me in his service for followup. Couldn't ask for better .......

I feel blessed! This man has given me some hope for a brighter future and I don't feel quite so despairing of a bleak future should surgery be ruled out. I feel like he has thrown me a lifeline where others have cast me adrift......

Sorry for the marathon message but it seems I had a lot to say haha!  

Feeling exhausted today but happier than I've felt for a while - might just have a 'dressing gown in front of the telly' day.

Jasmine x

Jasmine

I am so thrilled for you.  When you posted earlier that FP had refered you I wrote to say that he was in my opinion sooooo excellent, a breath of fresh air in the hpth world if you ask me and a truly nice man and inspiring doctor.   I was so lucky to have him take over my care early last year.   I am now on 4 monthly appointments with him while he monitors my progress and he is also looking after my daughter now as well.

I can't speak, or sing his praises, too highly -and of his excellent team - no wonder you feel so much more confident going forward with him taking care of you - my experience would suggest that you will remain that way.  

Good luck with tests etc., (radiology also arranged most of my tests on the same day too as I am also 'out of area')  

Best wishes
Anna

Jasmine I seen where Sallie posted this for you on facebook. I am so happy for you that it does seem you have some very good doctors on your side . That is so interesting about the I.V infusion. Your calcium was getting to high. My last calcium in November was 11.4 and my endo  wants me to do the MRI thing one more time so I will have that done on the 30th. He told me I have been at this way to long and even if the MRI in negative he wants me to see a surgeon or go on Sesipar. My choice. I will see him on the 9th. I really like all the work there doing for you. Keep us posted.

Hi Jasmine
This is really good news, I'm so pleased you have been cleared of having the dreaded FHH, the IV infusion sounds a brilliant idea and will give you a chance to see exactly what improves when your calcium is lowered, let's hope it loads of things and now FP has ok'd you for surgery it might not be too long before you are sorted.
Loads of love n hugs Amanda xxxx

Hi Jasmine,
Wow what amazing news for you, I am so happy that finally you have been cleared of the FHH hat and that things are albeit slowly moving forward.  I know there are some tough decisions to be made regarding further surgery but I am convinced that you would not be in any better hands than FP if you decide another surgery is the way to go.  I am glad that they have managed to organise everything for Monday, you will be one tired puppy at the end of it!  Thinking of you and good luck with it all.
Hugs from Sue

So glad to hear all of this, Jasmine, and don't worry about long posts, we need to know all the details and are so grateful when people post them.

All fingers and paws crossed here for a really intensive (but not too tiring) day on Monday, that brings everything into high relief (relief being the operative word ...) so that you can proceed with F,P confident of the finding the blasted adenoma that is still causing you trouble.

OMG - I just can't wait to see your post very soon this year that you are feeling so much better!!

Lots of Love from Tigerlily xxxx

Well, you KNOW how I feel about this, Jasmine!!

I could not possibly be happier for you! It sounds like your prayers are FINALLY being answered. I too cannot wait to read your first post saying your surgery went well, and you are feeling much, much better!

It sounds like you have found an excellent, intelligent doctor, and a wonderful, talented surgeon all lined up and ready to go.

I'm very glad Dr. Cox is being cautious and not rushing into the surgery, even though I do feel surgery will eventually be scheduled for you. I like the way this man thinks.

I do wish I could be there in person to celebrate this great news with you! Hang in there! It won't be long now!!

Audrey