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

Jasmine
My PTH has never been elevated since op and even before that it only went over twice. With a calcium level that high your PTH level would be classed as in appropriately raised, it should have dropped down so low it wasn't registering if your pth's were working properly. Very annoying you have to wait for Endo.
Keep strong.
Amanda xxxx

My thoughts exactly, Amanda ......

J

Yes, normally when the calcium is that high, the PTH should be extremely low. I was just hoping maybe there was a chance that things were still helter skelter in there from the disease and hadn't settled down yet. I know Dr. Norman says the PTH should drop immediately after surgery. I was praying there could be exceptions.

Geez, Lyn, if the tumor you had removed was producing close to 1000 units of hormone, and you still have another tumor that needs removed, no wonder you have been suffering so!! This is just too sad for me to accept. I guess God must know you are 1 #@!! of a strong woman, Lyn! He knows if anybody can get through this, YOU can!!! And you can!!!

Onward!!!!

Audrey

Hi Jasmine
##>%\* hell! What a pain endo is away. When can you see him again? I had one calcium reading of 2.9 last summer after I had managed to get my vitamin D levels up and I felt cr...! It's just unbelievable news. My only suggestion is if you need second opinion and you can't go to Tampa try Mr Palazzo as he's the man! The endocrine unit at Hammersmith is supposed to be fantastic and they deal with difficult cases.
My heart goes out to you and I send you my love and prayers hoping for some easy answer.
Lynn  xxxx

Oh, Jasmine, that is not what you need. Under the circumstances, can you get a quick appointment just with someone on Miles Levy's team this week? At least that would mean you get to talk to someone (i.e. another opinion) so you can express your concerns and then gather your thoughts again before you see Mr Levy?

Just a thought.

Lots of love and cyberhugs, from Tigerlily xx

PS Have also emailed and PM'd you.

Hi Jasmine,
I just wanted to say hello and say I am thinking of you,  I can't always get my thoughts straight especially when my half a brain is in mush mode.  With Easter fast approaching, too much to do and feeling tired does not help but anyway today at last my mouth is feeling less painful and I think I will manage roast lamb on Sunday.  I do so hope you get some answers soon, it is just such a blow after all you have been through.  I know I am not a doctor, but I just don't see how having a high calcium and PTH together is classed as secondary, I hope your endo contacts you soon with some kind of explanation and treatment options.  Have a lovely Easter and hope you have some answers soon.
Hugs for you, Sue

So I've just had a long phone conversation with Dr Miles Levy, my endocrinologist.  I really like and respect this doctor should anyone in the Leicester area (or further afield either privately or through Choose and Book) be looking for a good endocrinologist.  He has confirmed that I still DO have persistent primary hyperparathyroidism!  I don't know whether to laugh or cry... I'm relieved to be told definitely that I still have it, but devastated that I still do have it ......!  He was so sympathetic and offered me several options going forward and that he would go with whatever I wanted to do.  One is that I start the process again and be seen in the joint medical/surgical clinic at Leicester Royal on 21st May, so I can see both the endo physician and the surgeon  at the same appointment AND get an ultrasound on the same day; I can skip that and go for another MIBI and venous sampling to ascertain if I have an ectopic gland as he is in no doubt that I still have a diseased PT gland, or he will refer me to a surgeon of my choice in the UK and/or write to Dr Norman (who was certain that I was cured having removed a tumour producing almost 1000 units of PT hormone) for his opinion.  I have chosen a two pronged approach of attending the joint endo clinic in May, AND for Dr Levy to write to Dr Norman too.  Dr Levy was amazed that I would consider yet more surgery after all I've been through and he was expecting me to say I wanted a break from it all and let's just manage it medically for a while.  Yes .... I do want a break from it all - by getting bl**dy better! I've come this far and I don't intend to throw the towel in now.... if it means more surgery then so be it!  I honestly could not put myself and my family through me having this disease until I expire (most probably prematurely from PHPT!) if there is still something I can do to cure me once and for all!  Onward we march .....!

Jasmine x

PS in the meantime, whilst waiting for my Leicester Royal appointment, I might just pay to have a consultation with Mr Robert Hardy (surgeon) in Liverpool as I've been hearing some really good things about him.  I just feel like I want to explore every avenue open to me and get as many opinions as I can to try and be rid of this wretched disease!  Is that going over the top do you think?  Do I sound desperate?  Because I am - extremely desperate!

No, Jasmine, it is not at all going over the top. I don't think you can have too many opinions - I wish I could get a few decent ones myself!

Yours is not good news and you must be feeling devastated by it - but at least you know what Miles Levy thinks it is. A good idea for him to write to Dr Norman (I'm lovin' Dr Levy more each day!). It will help clarify your case, and get the US and UK experts talking to each other. It's also a good way forward to start the whole process again at your local hospital, especially as they had the skills to diagnose you the first time. They will go through it all step-by-step and find anything that might have been missed or wasn't visible the first time.

I've done a lot of research this morning on Fausto Palazzo at Hammersmith Hospital. Someone else on the original forum spoke highly of him. His biog on the hospital site states that he has a particular interest in pHPT and is experienced in re-do's, so it might be worth including him in your research as well. His secretary told me to ask my GP to refer me direct to him, and the endo back-up tests etc would be taken care of by his clinic (all on the NHS). This is why I'm thinking of going to see him, as I've no endo back-up for my case (not having asked the right people yet!)

Hang on in there, Jasmine. We are all here for you, and your case and the information you provide helps many of us to have the confidence to ask questions and move things forward. Your input here is invaluable, m'Dear.

As I'm still struggling to include attachments here, I'll send you an email with some of the stuff I've found this morning on Fausto Palazzo on:

www.us.bestpractice.bmj.com/best-practice/monograph/133/highlights

Love from Tigerlily xx

Thanks Tigerlily.  Glad you seem to be making some progress, albeit by your own decision making processes and taking the initiative! 

Yes, I must admit that the two surgeons on my radar are Mr's Hardy and Palazzo, I think it was Linny who recommended Fausto Palazzo having had surgery with him, and she speaks very highly of him, as do many others. The reason I've plumped for Robert Hardy is because of recommendations on the closed Facebook group.  The members are mostly from the US but there are a number of Brits, most of whom seem to have been seen by him, or are about to be, with really positive outcomes.  I was particularly struck by the story of one chap who'd had three surgical opinions from M the K, Fausto and Mr H.  Mack and Fausto turned him down for surgery as they weren't convinced he had PHPT due to inconsistent levels, in spite of the fact that he was highly symptomatic, but negative US and MIBIs.  He finally went to see Robert Hardy by recommendation, who confirmed his diagnosis, agreed to do the surgery, subsequently removed the offending adenoma, and the guy is now cured.  I guess I like the cut of his gib if he's prepared to fly in the face of peer opinion to give people hope and get them well!  But Fausto is definitely on my reserve list.

Leicester's not exactly local for me being a three hour round trip drive, but they have a decent endocrine service (Miles Levy has his day job there) and I wouldn't trust my local hospital as far as I could throw it......! True, my local GP first made the diagnosis and he referred me to Miles Levy for confirmation.

Thanks for your support Tigerlily; forward then, continuing to prop each other up through the process....!

Jasmine x

Hi Jasmine,
I can fully understand how you must be feeling, you have been through so much and still having to fight on to find a cure.  I know it must feel very daunting to contemplate what to do next but I know you have the strength to become cured.  I am also grateful for all the information you have posted, if I don't get any positive answers when I eventually see the local endo in 3 weeks time then I will ask for a second opinion from Mr Levy.  I have been waiting since the end of January and have rung a couple of times to see if any cancellations either here or in Lincoln but am told there is nothing available sooner.
I KNOW you will see light at the end of the tunnel, maybe not today but sometime soon, you have a plan of action and it is very sensible to explore all available options.  I wonder when you had your partial thyroidectomy if your paras were relocated or divided during the surgery?  I just wish there was an easier way of testing where all the little dears were hiding.
Thinking of you and hugs
Sue

Thanks Sue.  Yes, that's the general feeling from the surgeons, including Dr Norman, that it's sometimes impossible to locate all four glands after thyroidectomy as they may have been unintentionally removed or displaced during that procedure.  I agree, it's very frustrating that there isn't a simpler way of trying to locate the ectopic ones.  I'm obviously not a doctor but I'm wondering why they can't use something like the PECT scan which they use to locate cancer hotspots throughout the body?  Same principle surely ...... ? I might ask that question when I have my next clinic appointment.

Jasmine x

Sorry, Jasmine - misunderstood - thought Leicester Royal was your local.

Sounds as though you have a really good plan in place, despite the shock of all this - and yes, I can see how things might get moved around a bit after a thyroidectomy. It will be interesting to hear of Dr Norm's response, too.

I hope you can get to see Robert Hardy soon - I agree that anyone who will go against peer opinion sounds like a good guy! He must have confidence in his own abilities - always a good sign!

Good luck with the next step - we're all behind you (especially me!)

Love from Tigerlily xx

Well, I do have to say I am very impressed with all of you on this forum! You are all going through so much, but nobody is giving up! Great attitudes!!

Jasmine, I am so happy that this Dr. Miles Levy has agreed that you do still have HPT! Yes, I feel terrible that you are still dealing with the disease, and you still have to go through more to be well, but at last now you can move forward and have a chance to reach that final goal........AGAIN! YAY!! I can't wait to hear what Dr. Norman says when he is contacted again. Surely he will not continue to insist you are cured! If all of my symptoms don't resolve, and my calcium stays in the 10s, I will be contacting Dr. Toro for his opinion on my case. I figured I would give it all another month, when I hit the 6-month post-op mark. I am thinking my fight might not be over yet either, but I feel like Jasmine regarding this. If more surgery is what it will take to cure me, I'm more than ready. I still think we should just call this disease HELL!

Sorry I haven't been posting as much as usual. I've got several little projects going on here, and I'm racing to get them all completed. I do check in to see what's going on every day. I just don't have time to reply as much as I'd like.    Please know I'm thinking about you all and praying that all will go well for everyone!

Keep on truckin,' friends. We will all get there eventually!!

Audrey

Jasmine I know you will understand when I say I'm pleased that you have been diagnosed at last and Miles Levy seems to know exactly what to do to get you on that road to a cure. No one wants to hear that they have ppth but if that's what it takes to get this b****y thing out of you then so be it.
No you are not going over the top you are desperate and I know how you feel even though I've not had to suffer like you have.
I've actually got a lump in my throat thinking that you might actually get well and I'm so pleased that it's moving in the right direction.
I'm sending you all my love and strength for you to keep going and get this sorted once and for all.
Big hugs to you Amanda xxxx

So I am now in pursuit of a surgical opinion to see where I go from here. 

As I posted in Amanda's thread, I had a reply back from Robert Hardy; he was very nice but he said, given my complex surgical history, whether he could help me or not depended on the answers to a few questions about my surgery in Tampa, which I couldn't answer so I've had to email Dr Norman a bit sooner than I wanted to really, now waiting on a reply from him.  I just hope I don't get a smoking email from him insisting I'm cured and that my doctors are goats and monkeys.......

Adopting a belt and braces approach, I also emailed Fausto Palazzo for his opinion. Boy, am I impressed with him so far ..... I sent my email just before 9am this morning - at just after 10am I had a call from his secretary (who is amazing by the way even though she only started the job three days ago ....) to say he had read my email, wants to see me in clinic next Thursday, KNOWS Dr Norman personally and will ring him to discuss my case.  He has asked me to send all info relevant to my surgeries and test results etc beforehand so he can get a handle on what's going on before he sees me.  I feel blessed ..... Needless to say, I have cancelled my appointment with Robert Hardy - I'm sure he's brilliant but I've been bowled over by this immediate response from Mr Palazzo!

Jasmine x

That is impressive Jasmine and to be seen so quickly, is that at Hammersmith or The London Endo Centre ?

Nelly

At the London Endocrine Centre, Nelly.  Much easier for me, just one stop on the Underground from Kings Cross.  I HATE the London Underground - I have to traverse the dreaded Northern Line once a month for staff meetings at our head office in Kennington and it drives me nuts!  Hopefully, this will be much less traumatic!

Jasmine x

Sounds good, bet you are so excited   

Nelly

That's brilliant Jasmine I'm so pleased you have got such a quick response from him. I hope he gets the info he needs from Jim Norman and can operate ASAP you so deserve this and I know Lynn was very impressed with him. As soon as I get the blasted answer from the Endos dept I will start to get the ball rolling. Not sure if he will be quite so keen to reply on NHS but who knows.
Amanda xxxx

Well, I'm not going to get my hopes too high Nelly, having previously been turned down for re-operative surgery here in the UK by M the K, who said no other surgeon here would attempt it as it is too risky, which is what necessitated my trip to Tampa.  Just have to wait and see what Mr P has to say, but at least he's agreed to see me knowing my story.....

Thanks Amanda.  Like I said, I'm just grateful he's agreed to see me knowing all the facts, and that he will discuss things with Dr N, but whether or not he will agree to operate remains to be seen.  But it's a step in the right direction ..... I feel sure that he would have the same compassion for all patients regardless of private or NHS; it's just that 'private' gets the ball rolling that bit quicker and I've had this cr*p for so long now I'm at the end of my tether and would re-mortgage my house if it would guarantee a cure......!

Jasmine x

Jasmine I know exactly how you feel and fingers X'd with the correct info from Dr Norman he will agree to operate.
If only Dr Norman had been able to check them all then it would have been sorted. Have you had any reply from him re your email. I hope he  and Mr Palazzo have a good discussion and between them they get you sorted.
Amanda xxxx

Nope, nothing yet from Dr Jim, but I did send him another email this morning as a courtesy, advising him of Mr. P's involvement so perhaps he will wait to have that discussion first before replying to me. I wonder if he thinks Fausto is a goat or a monkey ......?  

Oh dear I'm sure you will find out soon  
A xxxx

Hi Jasmine, That is such good news for you, I really really hope and pray that he can get you sorted once and for all.  I used to work at the Hammersmith many moons ago, it is the hospital I would think about going to, as my daughter lives in London.  
Just make sure you don't end up next door in error as it is Wormwood Scrubs!  Have a safe journey next week and good luck!
Sue

Thanks Sue.  I'll walk past the Scrubs in cognito in case they recognise me and haul me in lol!  (For our non UK friends Wormwood Scrubs is a very famous London prison   )

Just as an update, I received a lovely email back from Dr Norman who said he will review my case notes and get back to me later today, and told me not to worry!  

Jasmine x

PS Sue, lovely picture of your kitty!