Post op follow up

First topic message reminder :

Well, I'm now six weeks post op Tampa! As most of you know that was my second PT surgery, since which my calcium and PTH have still not returned to normal.  I'm seeing my endocrinologist - Dr Miles Levy in Leicester - tomorrow for a follow up appointment so I should know in a week or two, after more tests for him, where I'm actually at with all this.  I'm still having some HPT symptoms but I don't know yet if these are just lingering as part of the recovery process, or I do indeed still have a persistent primary hyperparathyroidism.  Time will tell, watch this space ......

Jasmine x

Only just got this news, Jasmine - that is so fantastic! Just the thing you needed to get you moving forward again. And what a coincidence that Mr Faustus and Dr Norman are on speaking terms, so to speak!

Sooo pleased for you - am really excited to know more - but will keep calm until we hear more from you!

Love Tigerlily xx

Well, you know how I feel about all of this, Jasmine. YIPPEEEEEEEEE!!!!!!!!!!!!!!!! So very happy for you! Can't wait to read that first post from you, telling us your surgery was a success, your levels are low, and you are feeling wonderful!! It WILL happen! I just know it will!

Also, very happy Dr. Norman sent you a decent reply. I think he just has some bad days sometimes, just like the rest of us.

Your new surgeon sounds like a real winner! Hopefully, he will agree to take on your case and be the one to cure you for GOOD!!

Audrey

Ha Jasmine
I've only just read your post but am not surprised at the response. I'm so pleased you are going to see him. He is brilliant. Hope it all goes well. Hammersminth is a bit close to Wormwood Scrubs but it was the hospital itself that caused us a few issues.... It's a veritable maize!!
Love Lynn x

Jasmine I am so sorry you still have phpt. but very happy that you have a good Doc, I was so sure that Dr N would cure you once and for all. You are one hell of a phpt warrior. wishing you the best.

How did the appt go jasmine ? It was yesterday wasn't it ? Or have I got it wrong   

Nelly

Thanks for thinking of me Nelly, and everyone else for your kind messages of support. I'll post fully tomorrow as I've been so tired today, exhausted in fact, after my excursion to London yesterday which turned out to be quite the day from hell, although my appointment with Mr Palazzo went well and I feel we have something to build on so feeling quite optimistic.  Will explain all tomorrow, but suffice to say all that has been said about Fausto is so true - a gentleman, kind and gentle and very caring and compassionate, and I'm so glad I went to see him.

Jasmine x

Have a good rest Jasmine and we will look forward to hearing how it went when you are up to posting.

Nelly

All sounds promising, Jasmine!! So happy for you!
It sounds like you've found a gem of a surgeon. I have a very good feeling about all of this. I think you're about to be cured for GOOD!!!

Audrey

Great news about FP, Jasmine, but have a good rest for a while.

Lots of Love, Tigerlily xx

Good to hear that you made some progress with Mr P. Looking forward to hearing about it when you feel ready to post.
Lots of love Amanda xxxx

Well, I won't go into the why's and wherefore's of events that led to my day being one from hell on Thursday, too long a story, but everything that could go wrong did go wrong and I ended the day, and most of Friday, feeling battered, bruised and exhausted!  The best part of the day was meeting Mr Fausto Palazzo!  
My appointment went quite well apart from long delays in the clinic starting, waiting for blood tests until gone 6.30pm having been speared six times by two different people to get my blood, persuading Mr Palazzo not to make me take a canister home, do a 24 hour urine collection and go back into London the next day carrying a gallon of wee on the train to drop it off, all of which led to me getting very stressed and muddled and missing my train home.  However - Mr P is such a nice man and so kind and compassionate.  He said that I've been through so much already and I can't keep going through this awful struggle time after time, so he wants to take his time to get it right, start from 'ground zero' as if from the very beginning and take it a step at a time until we find a solution, but firstly he needs to establish for himself that the diagnosis is correct, that I do definitely have persistent pHPT and that there is no other underlying cause for the hypercalcaemia which no-one has yet considered, particularly as I've now had two surgeries which have failed to cure me which makes things so much more complicated; presumably he will be wanting to rule out pituitary or kidney involvement etc, or hyperplasia I guess.  I was very touched when he said he would look after me as he would his sister or his mother! I feel comfortable with him and reasonably confident without being overly optimistic, as he is not yet prepared to speculate on whether or not he can offer a surgical cure, but it's a start! In terms of a response from Dr Norman, I guess he is not willing to accept that I might not be cured following my surgery with him as he has advised me to "chill out, relax and do nothing for a year or two as it's not 100% clear that I still have primary hyperparathyroidism" even though Mr Palazzo has pointed out that my calcium and PTH values are exactly the same as immediately following my surgery with Mac the Knife (who was unable to locate the adenoma) and so therefore nothing has changed apart from me being several thousand pounds poorer!

So, onward I march - well, stroll I guess, but at least it's moving in hopefully the right direction.  I don't feel quite so despairing now, so thank you Mr Fausto Palazzo for being so kind and giving me a glimmer of hope.

Jasmine x

Oh, Jasmine - sorry to hear of all the stress, but great to hear about FP - hopefully considering you as his sister and not his mother!!

They all seem to want to do their own tests in their own labs at their own hospitals which can be frustrating, but in your case I think you need someone who is going to go through everything again to see if anything has been missed in the past, and rule out all the other possibilities to drill down to the cause. God forbid that something has been missed, but he sounds like just the guy to find it for you!

I've made the appointment to see Dr Levy now as well. I think I got the appointment he offered you for 22nd May! So we'll see how things go. My GP was happy to refer me and get faxed over the reams of information I've provided (his secretary won't be so keen ...) and Spire Leicester were anxious that I should get the appointment booked, so I did. I didn't realise it would be so easy and should have thought to pay the £150 for an initial consult sooner, just like you said, as I've checked about being referred back into the NHS system for any tests needed, and that appears to be OK as well.

Chin up, girl - enjoy your weekend, and it will be onward again next week.

Lots of Love and Hugs from Tigerlily xx

Jasmine
 So glad you have a good doc, Sorry you had the day from hell. I don't know if the UK does this, but my US doc which is about 200 miles away from my home town, he will give me a lab slip and that way I can go to my local lab close by   and they send him the results. I would hate to do a 24 hour urine and drive 200 miles just to turn it in, or carry it on a train. You dissever some answers, I pray that you get them. and it sounds like Mr Palazzo will be the one that will get down to the bottom of it. xoxoxo   Kathi

Hi Jasmine,
It sounds as if FP is really going to give this his full attention and try to get to the bottom of what is going on and I applaud him for that.  It makes the most logical of sense to start from the beginning and go through all the tests etc to make the right judgements on the next step forward, it should be a process of elimination and I get the feeling that this is exactly what he says he will do, no flannel, dilly dallying, fobbing off, wait and see, but someone who will do his best and this is how it should be but sadly many are lacking.  To have some confidence in the people treating us is half the battle too and with all the tests they can perform today it should make decision making so much easier if they all pulled their fingers out.  I sincerely hope that this time they will not give up until they find the problem and offer a solution.
I hope you feeling a bit more rested today, at least the sun showed itself here this afternoon.  You will get there!
Sue

Jasmine I'm so glad you had a promising meeting with FP after the crappy day you had leading up to it.
It's good he is going to check everything from the start, it means you will at last get to the point of a cure which ever road that takes. I'm disappointed that JN took that attitude how can you chill out for a couple of years feeling as unwell as you do ?
I presume he didn't make any comment re M the K !!
It helps so much if you feel comfortable with him as well, he sounds as though he understands what you've been through and is very keen not to add to that.
Hope you can get a bit of rest, enjoy the sunshine and spend some time with your family and lots of hugs for your Son. That's if he still let's you.
Mine is now 6 ft 4 and 25 but still loves me to give him a hug even if he is a ft taller than me as does my daughter, If we go out I try if I'm not too uncomfortable to wear heels otherwise I'm the midget in the family.
Amanda xxxx

A midget at 5'4"? How does 5'1" sound? Well, actually 5 feet 1-1/2". Can't forget the 1/2"!! I was the shorty in our family until my son, who is 6'1", married a girl who is 4'11". My son was not too affectionate in his teen years or in his 20s, but now at 41, he gladly accepts my hugs and smooches. I think he finally realized just how nice it is to get hugs from mom.

Audrey

   Xxxxxx

Strewth, give me strength.....! Save me please someone from incompetent GPs! 

When I saw Fausto Palazzo on 1st May he requested a whole rake of blood tests and a 24 hour urine test, which he reluctantly agreed to allow me to do via the GP to spare me having to go back into London to deliver the finished product.  My doctor advised me he had sent the results of my '24' to FP last Friday.  I can now understand his reluctance as he's very probably aware of the ineptitude of some GPs, mine being counted in that number! Today I had an email from FP's secretary with a copy of the letter he had sent to my GP politely asking for the rest of the results as he had only received the calcium clearance, and he also needed the creatinine clearance to do the calculation for the calcium:creatinine ratio.  I rang my GP to say "what's occurring here then ....?" And he said "oh, did he want creatinine clearance as well, I only requested calcium" $€>^~<#% hell!  So now I have to do it again, as we HAVE to rule out FHH before we go any further in spite of my latest biochemistry quite clearly indicating that my persistent pHPT is still persisting:

Total calcium 2.74
Corrected calcium 2.64 (ref range 2.10-2.55)
PTH 7.6
Vit D 44 (25-50=insufficient)
Gamma GT (liver enzymes) 101 (ref range 5-36)
eGFR 75(indicates decrease in kidney function, above 90 is normal)
Uric acid 368 (ref range 143-339) precursor to kidney stones

I'm furious with my GP!  I actually sat in front of him and said that the '24' was for my calcium:creatinine clearance ratio to rule out FHH - I suppose the alarm bell should have rung when he said "what's that? ...." Grrrrrrrrrr.......!

OK, rant over....on we go!

Jasmine x

OMG Jasmine I would be mad as hell to.

Oh, my goodness, Jasmine, what a shame!!! And this would be just 1 more reason I will call my book "HELL!" Maybe I should call it "WHAT The HELL?!" I am so sorry you are having to go through so darned much!! I think we should get all of our doctors together, sit them down in 1 room and TEACH them about this $%#&%$ disease!!! You poor thing. When do you get a break?! Hang in there!

Audrey

Oh Jasmine! Bleepity bleep to your GP   Perhaps you should get him to refer to this forum since he might learn how things are done! I'm so sorry that this is all such a difficult journey for you. I wish I could help, but feel free to continue your rant if need be.

Big hugs and take care of yourself.

Love
Brigitte xx

Jasmine this is exactly what happened with my first 24 collection and this was the Endo not requesting the creatinine.
Bunch of idiots, I wish I could be this incompetent and earn the amount they do!!!!!!
Grrrrrrr
Love Amanda xxxx

Hi Jasmine,
Ohhh I do wonder and despair at times,  ditto to Brigitte's bleep the bleep is up with them????  I would have been angry too.  You would think they would really check everything when you have been through so much already.  Sorry dh now ready, got to go
Take care
Sue xx

It's official!  My GP is a lazy, incompetent idiot who shouldn't be practising as a GP in my opinion !!!!!

So I've been waiting to receive the request forms from him to repeat my 24 after he cocked up the first one! I still hadn't heard from him by yesterday so phoned him.  His excuse?  I don't know what more I can do as there isn't a button to press on my system to request calcium AND creatinine in the same 24 hour collection.  Un-bl**dy-believable ......!  He said "it might be best to get Mr Palazzo to do it" "Yes" said I, "that would have been Mr P's preference too but to spare me another trip into London carrying a gallon of wee on the train he agreed to let you organise it". I was so dumbfounded that I emailed FP to explain and ask for the most precise instructions he could provide to pass on to my GP.  To say his reply was in an exasperated tone is an understatement! So this morning I phoned my local hospital pathology department to ask what part of this test is my GP just not getting?  I could almost hear his eyes rolling and he said ask your GP to phone us and we will explain what he needs to do.  Two points here: why didn't my GP do this in the first place if he didn't understand the requirement and why oh why do we patients continuously have to fight to get things done, to the point of having to do it ourselves to get anywhere??!! 

OK rant over...... Mr Palazzo was absolutely lovely to me in his email and said not to despair, that it was imperative that we get things right this time by doing things correctly, and that I've been through too much to cut corners now.

Jasmine x

Oh Jasmine
That GP is unbelievable you are right he really shouldn't be a doctor. He should have got off his A**e and done exactly what you did and ask someone who did know, it's pathetic I feel like screaming on your behalf so I can imagine how you feel.
We are doing their blasted jobs for them whilst they sit back and just rake in the money.
I'm so glad FP is understanding and I bet your GP ears were burning. I think if we could actually do these things ourselves we would do a much better job !!!
Talking about unbelievable GP's .................
I had to pick up a prescription from my surgery re headaches/neck pain, I had spoken to the GP in question that morning and he was getting it sorted for me (this GP owns the practice and I have had meetings with him re my pth and how they have handled the situation)
Well receptionist couldn't find the prescription so called him and he came out and beckoned me into his room. Just as I sat down the receptionist found it and brought it in. I was just about to get up and go and he said.... wait a minute I want to talk to you so I sat down, thinking he was going to ask me how I was what was the current news re pth etc !!!!!!
How wrong I was...... He took out two pairs of new spectacles and said give me your honest opinion which one of these suit me best !!!!!!!!! he then proceeded to try them on   I'm not kidding, I was so shocked I actually said the 1st ones and said I have to go now and walked out the door!!!!!!
I can't believe it happened, I can't believe I didn't tell him to @%$£ off (I don't use that word but I wish I had)
It is totally unbelievable, this shows how arrogant and self obsessed he is and as for giving a damn about me as a patient its a joke. I will at some point have to change GP's but the one I want to go to is not taking in new patients atm and the other in my area is worse than the one I'm at if you can believe that.
Amanda xxxx