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On we go.... FHH v pHPT

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On we go.... FHH v pHPT

Post by Jasmine2 on Fri Jun 13, 2014 10:11 am

I decided to start a new thread for my ongoing saga as it's not so much 'post op progress' any longer, more starting again on the next stage of this bloomin' HPT 'journey' - yep, there it is, the J word, but I don't know how else to describe it other than this rocky road to wellness, but that sounds too chocolatey and nice, and nice this ain't......!

So I saw FP again in London yesterday.  You will recall that his most recent suggestion is that maybe I don't have pHPT at all but FHH and we're going down the genetic CaSR testing route.  I was frustrated by having to wait for three months for the results of that, with the possibility that it will be ruled out and we've wasted three months where we could have been pursuing the search for the offending adenoma/s in the meantime. 

What I was hoping to achieve from yesterday's appointment was that we do just that.  So I made some extensive crib notes prior to the appointment outlining all my symptoms (FHH is described in the literature as benign and asymptomatic, which I'm most definitely not!), all my blood, urine and surgical results, how it's affecting me personally and my wider family life, referenced all the research papers I've read (including his own) and generally describing all the reasons why I think it can't be FHH, or if it is then I have pHPT as well (and I referenced a paper to show that this can happen, albeit very rare).  Although these notes were for my own benefit as an aide memoire, Mr P was extremely interested to read them himself and in fact asked to keep them.

I did lose my composure at one stage and the tears flowed, but he was just so attentive and compassionate, and affirmed everything I have gone through as 'so much', that he was taking a special interest in my case because it is so complex and unusual, and will leave no stone unturned until we have got to the bottom of it all. He said he isn't ruling out pHPT by testing for FHH, just that it is a process of differential diagnosis to make sure it is absolutely the correct diagnosis.  

He agreed that we could be making use of the three months wait by proactively looking at everything and doing more diagnostics, although he wasn't prepared to do more PT scans and venous sampling until he is convinced that there is something further to look for, but in the meantime he is referring me to one of his endocrine colleagues in London, under the same roof so to speak rather than refer me back to Miles Levy, to proceed with further tests to check for pituitary involvement, MEN, adrenal insufficiency etc, as well as repeating calcium, PTH, Vit D, phosphates, and UCCR to support the persistent pHPT theory.

He isn't too pleased with the fact that Dr Norman isn't following me up, having told me to chill for a year or two regardless of the fact that my levels haven't returned to normal following my surgery with him, and I think he will be contacting him to say so - yikes!  Don't want to start a domestic ......!

Jasmine x
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Re: On we go.... FHH v pHPT

Post by Amanda Lynne on Fri Jun 13, 2014 10:44 am

B***** Hell Jasmine, I know he has to do all these checks because of your complicated history but I really feel for you, as you say the J word is not something you want to use but that is exactly what it is.
I'm not surprised you lost composure I think I would have as well.
The only thing that can be said is he is definitely going to get to the bottom of it.
I should think he is a bit concerned about Dr Norman dismissing you like that !
Do you know which Endo he is referring you to and where ?
I can imagine you feel pretty fed up ATM but keep strong I seem to be in it for the long haul as well and I'm there beside you all the way.
Lots of love Amanda xxxx
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Re: On we go.... FHH v pHPT

Post by lozza on Fri Jun 13, 2014 11:17 am

Hi Jasmine,

I think you did really well and this Guy wants to cover the whole picture, there are so many endo glands to check out. I know he is waiting and seeing but he is also going to do further checks with other glands. This is better than the " wait and see and we do nothing approach " that I am going through.

I know all of this is frustrating, but I would say this guy wants to find out what is happening and as an expert he is saying your case is complex.

best wishes

Lozza cat

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Re: On we go.... FHH v pHPT

Post by Jasmine2 on Fri Jun 13, 2014 11:52 am

Thanks Lozza and Amanda.  Yes, although it wasn't quite as much as I'd hoped to achieve, he is at least sticking with me and filling the time proactively in the meantime, so you get the feeling that things are happening still, albeit very slowly, and he's keeping an open mind on the diagnosis.  I like him, I really do, just feel frustrated at the time it takes to get things done, but as you say Lozza, at least I'm not on the  wait and see list.

Another thing he did say, which didn't sit too well with me but I kept quiet, is that previously 'they' had always thought FHH to be asymptomatic, but it is becoming evident that actually it's not and that for a lot of people (a lot .....? How many have it for goodness sake ....?!) it can make them very unwell. The reason this didn't sit well with me is the thought that there is no surgical cure for FHH so how the heck do they treat the symptoms?  With the dreadful Cinacalcet I expect and referral for palliative management with the rheumies etc.

I plucked up the courage to say that I felt a large percentage of the endocrine community have no comprehension of just how ill this disease makes you feel, and how it wrecks lives, not just for the patients but families as well, and the professional mindset needs to change to accommodate this, and he agreed saying that more and more of them are developing a better understanding of this, which is why many are becoming more forward thinking and referring early for surgery now, but there is still work to be done on that front, which is why he was particularly pleased to have a copy of my extensive notes on the personal aspect of my process.  Hope I banged the drum for us all a bit there.....

Jasmine x
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Re: On we go.... FHH v pHPT

Post by Guest on Fri Jun 13, 2014 11:55 am

Hi Jasmine,

So sorry you are still on this PHPT Journey and what a hard time you have had!

Its like climbing up a huge mountain nearly reaching the top and then you slide back down, why do people with pPHPT have to fight so dam hard especially with the medical profession, its an edurance test in itself getting them to beleve your ill in the first place. Mad  


FP sounds like a lovely man and it must be beyond frustrating for you to wait further and have more tests, but he sounds like he wants to get to the bottom of this once and for all and its very encouraging that he has taken an interest in your case.  Smile 


All the best and hang in there! x

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Re: On we go.... FHH v pHPT

Post by Amanda Lynne on Fri Jun 13, 2014 12:25 pm

Jasmine you banged the drum the bongos and the whole percussion side of the orchestra for us, it is so difficult to cope with this horrible disease and still try to carry on with a normal life for our families sake.
Oh no FHH now considered symptomatic that's a nightmare. 
I don't think, if I've got it (fingers X'd none of us do) I could cope knowing I'd feel like this forever.
I think it was very brave of you to tell him that our Endos are lacking in the knowledge dept of this disease and it was good to hear that he agrees with you.
He sounds lovely and very caring and if I ever get to the stage of being diagnosed I will ask to be referred to him.
Amanda xxxx
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Re: On we go.... FHH v pHPT

Post by lozza on Fri Jun 13, 2014 12:44 pm

Hi Jasmine,

thanks for giving Mr P information regarding parathyroid patients and how we all feel. He honestly sounds a good guy , more importanly from what you say I would trust him and that is coming from someone who has a complete hospital phobia !

it is a lot of info to take in, I get totally confused with it all.

best wishes

Lozza

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Re: On we go.... FHH v pHPT

Post by Lucycatnaps on Fri Jun 13, 2014 3:00 pm

Hi Jasmine,
I too want to say thanks for championing our cause and raising how much it affects our every day lives.  I want my life back as we all do, I am tired of being walking wounded as I call it, running out of steam by lunchtime and dragging myself through the rest of the day.  I was also told by Mr P that generally FHH is symptom free but that now they are reconsidering and that it can cause debilitating symptoms just like HPT.  
It sounds like you had a good proactive appointment and that at least you are following up other leads to rule them out whilst the genetic testing takes place.  I so wish that you get some answers and get well sooner rather than later.
Hugs Sue
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Re: On we go.... FHH v pHPT

Post by Amanda Lynne on Fri Jun 13, 2014 3:13 pm

If there is a chance some of us have FHH and it is symptomatic, why is it only in fairly recent years that most of us have been in pain and had other PTH symptoms brain fog, dehydration, fatigue, lack of concentration etc.
Surely we would have had this all our lives ?
Just a thought !
A xxxx
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Re: On we go.... FHH v pHPT

Post by Lucycatnaps on Fri Jun 13, 2014 3:31 pm

Hi Jasmine,
That thought keeps popping into my head as well, trouble is, it pops right out again due to brain fog, so that when I have an appointment I forget to ask, forget to read my list and then get flummoxed and then sound stupid.  I did also read that it is usually diagnosed at a much younger age, what triggers a diagnosis at a young age I haven't fathomed yet, unless in females it is giving birth?  There are cases where a new born can have a severely low calcium due to the high serum calciums from the mother until its own parathyroids kick in.  However if the genetic condition is passed onto the baby then nothing is abnormal or detected.
Sue
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Re: On we go.... FHH v pHPT

Post by Brigitte0 on Fri Jun 13, 2014 6:13 pm

Oh Jasmine, you have achieved so much with your appointment with FP there! Don't lose sight of the positives you found there, both for yourself and for everyone else who is going through the wretched parathyroid mess. He sounds like a caring bloke who wants to explore every possible route out of the complex case that you are, so I hope you feel chuffed, uplifted and encouraged. Well Done you!

If I was you, I wouldn't worry about FP having any sort of contact with Dr Norman. I think the parathyroid world would be a better place if the surgeons and endos had more contact with each other. In my dim and foggy brain, I seem to have read somewhere recently that said surgeons and endos actually do get together, at least in the UK, to discuss, compare and unify parathyroid treatments... All I can say is that it's not working. Or I dreamed it, more like! There is nothing unified in treatment that I can see: everyone on this forum has a different story to tell. 

Keep your spirits up, you're a heroine!

Love
Brigitte xx
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Re: On we go.... FHH v pHPT

Post by lozza on Fri Jun 13, 2014 6:23 pm

Yes, they have a big conference in America, that is UK and international societies.

https://www.endocrine.org/endo-2014
 lots of talks about parathyroid, and other endo glands.

 progress I hope.

regards

Loz

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Re: On we go.... FHH v pHPT

Post by Tigerlily on Fri Jun 13, 2014 9:24 pm

Just seen this thread, Jasmine - so pleased you were able to express yourself well, including tears, and that he wanted all the info you had prepared. The more stuff he gets from patients, the better informed the PTH world will be. I'll take him another truckload on Thursday!

There is a Quality of Life Questionnaire on his hospital pages (for assessing Growth Hormone Deficiency actually, but very useful generally). I filled it in honestly and it makes me seem in quite a state. Might be an idea to fill it in yourself and send it to him in the interests of furthering his knowledge of how this illness affects us emotionally:

Google: Qol-AGHDA or Quality of Life Assesssment of GH Deficiency in Adults and it should come up, let me know if not.

It's a pain all this waiting, but he's got to be thorough and you would want him to be after what you've been through, I'm sure. So good that he's a nice sympathetic guy. Sounds the sort to be nice to his mother, too!

Have a rest from the travelling this weekend and try to hang on in there, girl.
Pat all available dogs, sons, etc., and yes, we are all here behind you.

Lots of Love Tigerlily xx

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Re: On we go.... FHH v pHPT

Post by Kathi209 on Sat Jun 14, 2014 8:45 pm

Hi Jasmine just letting you know the lady from the UK on fb with fhh name is Fay Spooner I did a search and found her name. She mentioned that she also had phpt symptoms. I read where it can cause problems with the gallbladder and pancreatic [ sp] When I talked to my pcp about the fact my endo mentioned fhh to me, my pcp was kind of upset and said so is he just going to let you run around with a ca level of 11.3. So I did ask my endo  he said sometimes they will try to lower the calcium with meds, but most people with fhh that is there normal , the 2 biggies with phpt are osteo and kidney stones which is not suppose to happen with fhh. Keep track of your dexa scans maybe you could have another dexa to see if your bones are in worse shape.
What a pain in the you know what. But once you get that ruled out, its onward and upward. My endo has finally dropped the fhh for God knows why but if he bring it up again, I will blow my top, because I wanted to test for it and get that test out of the way so we don't play the guessing game. Grrrrrr why can't this be simple.  xxxxxx Kathi

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Re: On we go.... FHH v pHPT

Post by Jasmine2 on Sun Jun 15, 2014 9:22 am

Thanks Kathi, yes it is a real pain in the derrière, you're right and what can we do but keep plodding on!  That's good advice about keeping on top of the bone scans - I'm due for another DEXA in a couple of months time as the advice is to have one yearly with hypercalcaemia, so I'll make sure my GP doesn't forget.

Jasmine x
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Re: On we go.... FHH v pHPT

Post by Tigerlily on Sun Jun 15, 2014 9:40 am

Hi Jasmine
If it's only a couple of months away, in your position with questions needing answering, I would be tempted to get it brought forward, booked in and done asap - but then I am becoming the most pushy patient now!

Writing my these for FP today.

Love from Tigerlily xx

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Re: On we go.... FHH v pHPT

Post by Tigerlily on Sun Jun 15, 2014 9:11 pm

Oops, I mean "thesis" - sorry!

M x

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Re: On we go.... FHH v pHPT

Post by Little Audrey on Mon Jun 16, 2014 1:04 pm

Well, I have not been on here for a couple of days due to LOTS going on here at our house. We've got a big family reunion coming up in a couple of weeks, and we've been very busy preparing our house for the occasion.

Jasmine, I'm very sorry I have not been here for you. It is so hard to imagine you are still suffering so badly and still having to fight for a cure and your health! It sounds like FP is trying his darnedest to figure out your case, but I don't see why you have to wait for ANY type of test! Have you not waited long enough already?!

I do not think you have FHH. I know the doctors have to be thorough, but I wonder if they would be wasting so much time if it were they who were suffering. No, I don't think they have any idea how badly this disease destroys our lives and the lives of those who love us. If they did, they would hurry things along for us and not leave us in limbo.

As far as falling apart at your appointment and shedding some tears, I think that must be another symptom of this $%#$%& disease, because I sure do my share of that myself. I am still not well, and I still can't seem to keep from bawling at my appointments. I think we're just so drained and so frustrated, it just can't be helped. I have been especially emotional since I got sick a few years ago. I just can't seem to control my tear ducts anymore.

I am very happy FP will be contacting Dr. Norman. IMO Dr. Norman should not have told you to sit tight for a year or 2!! He states on his site that your PTH should drop immediately after surgery and your calcium should follow. Yours have not. Why would he think that is normal? I am very anxious to hear his reply to FP. I'm sure it won't be pretty, but I'd like to hear his explanation of it all. If he is a true professional, he should be willing to help FP get this all sorted out for you! I hope he will, as I have had the greatest respect for the man, and it would greatly disappoint me if he would not be willing to help such a beautiful person as you in such need of his help! I am already very disappointed that he told you to just sit and wait.

You are 1 very strong woman to have been fighting for as long as you have and to still be able to keep your head on straight and continue the fight! I am totally impressed!! Hang in there, friend. There is still light at the end of the tunnel, even if it has faded a bit at the moment!

Audrey


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Re: On we go.... FHH v pHPT

Post by MaryM on Wed Jun 18, 2014 11:06 am

Hi Jasmine

I feel really sorry for you and no wonder you got upset.
If only things were simple when it comes to our health matters and finding out whats wrong with us but as we all know its all very complitcated.
On one hand you want the correct diagnose and on the other you just want to feel better.

Mary x

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Re: On we go.... FHH v pHPT

Post by Jasmine2 on Wed Jun 18, 2014 11:27 am

Thanks ladies.  Yes Tigerlily, no doubt the three months will fly by especially now that Mr P has agreed to get other tests done in the meantime.  Audrey, thank you but I don't think I'm any stronger than anyone else to be honest, especially you my friend, from whom I get my strength, along with every other strong HPT warrior on here!  We have to be strong or we'd go under ......!  Mary, you've hit the nail on the head - yes we do want the correct diagnosis but the priority is to get well again so ultimately the diagnosis is secondary to that.  We just have to do whatever it takes and be proactive ourselves to achieve the right treatment for the right diagnosis.

Interestingly, the Norman Parathyroid Centre are actually taking a bit of interest now, having been told to chill out for a year or two by Dr Norman.  I had to write to the head nurse there (Kelly, Audrey ....) to request another copy of my post op histology report for Mr P.  On emailing back with the report she asked how I was doing; I replied that actually not so good, and listed all my lab results since surgery. She replied saying that doesn't look so good, to send her all my lab reports and she'll get the doctor to comment.  In the process now of scanning them all to send to her.  Watch this space, as they say......although I'm not going to hold my breathe after being summarily dismissed as "cured for life" by Dr Norman.

Jasmine x
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Re: On we go.... FHH v pHPT

Post by Little Audrey on Wed Jun 18, 2014 11:58 am

Jasmine, this is great news!!! The fact that Kelly admitted your post-op levels do not sound good, makes me think she might also relay her thoughts to Dr. Norman, causing him to think twice about it all now! I mean, I can't imagine Dr. Norman would want to be shown up by another surgeon. Would he really want another surgeon curing you when HE couldn't? I am very happy to hear of this!

Thank you for your kind words. You are such a dear, sweet friend. I may have been through quite a bit so far, but I can't even imagine dealing with all you have! You are one VERY special person!! It is you who gives me the strength to continue on my journey, along with everyone else on this forum. I honestly don't think I could have gotten this far without you all! I am so blessed to have found the old forum last year and have found so many friends and so much support, and I am so happy I got to meet so many new people on this new forum. Yes, onward we all go! We CAN do this!!

Audrey

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Re: On we go.... FHH v pHPT

Post by Guest on Wed Jun 18, 2014 2:56 pm

Hi Jasmine,

Keep fighting Jasmine, you deserve to find out whats going on with your own body, it must be so frustrating for you to still be symptomatic pHPT after actually having a parathyroid tumour removed by the world famous Norman Parathyroid Centre and then being told to CHILL OUT, still on a positive note its good that FP is reviewing all your medical history and getting you tested for FHH, (primarily to rule this out!)

FP sounds like he will get to the bottom of this, while being compassionate and caring while he does so.

I am still waiting to hear at the moment if i have been referred to Hammersmith Hospital, i have made a few calls to my previous hospital and Hammersmith but i am in limbo land at the moment!

Take Care

Diana x

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Re: On we go.... FHH v pHPT

Post by Jasmine2 on Wed Jun 18, 2014 9:32 pm

Ooooh Diana, not the dreaded limbo land ..... grrrr!  Hope you hear something soon.  Keep making those calls! Make a nuisance of yourself until you get answers!

I've now sent my post op lab reports to Tampa at Nurse Kelly's request.  She's emailed me back to say that she's added them to my chart which she will give to Dr Norman for review and comment, but I'm not holding my breathe having been told already by Dr Norman that I can't possibly still have parathyroid disease, that I'm "cured for life" so chill out and relax for a year or two. Relax?  Mmmmm, let me see ..... bone pain, crappy joints, weak and achy muscles, brain fog, headache, nausea, belly ache and gastric reflux, extreme fatigue, insomnia, pee-ing for England, depression, anxiety, irritability, double vision and dry eyes, palpitations, paranoia....... RELAX?  see if you can relax and chill Dr Norman with all this going on!!!!!!! Even if the Norman Centre accept me for more surgery there's no way we could afford to do it all again anyway, unless they do it pro bono, which I seriously doubt as they do have a business to run and a living to earn and they're probably poor, starving surgeons just trying to keep the wolf from the door!  Sorry for the cynicism but it did knock me sideways a bit when I was summarily dismissed by Dr Norman as "cured for life".

Jasmine x
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Re: On we go.... FHH v pHPT

Post by Lucycatnaps on Wed Jun 18, 2014 10:15 pm

Hi Jasmine,
I will keep fingers and toes crossed that something positive and proactive will be the result, it can only be beneficial and to my mind he has a duty of care to all his patients to follow up if they are still symptomatic as you definitely are.  I know how hard some days can be to get through and find it all so frustrating that my energy levels just peter out by lunchtime.  I think I would feel as cynical too.
Good luck,
Sue x
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Re: On we go.... FHH v pHPT

Post by Jasmine2 on Thu Jun 19, 2014 8:08 pm

Well now I know where I stand with Dr Norman!  I didn't actually solicit any further comment from him after his previous announcement that I couldn't possibly still have parathyroid disease and I am "cured for life", but when I wrote to Nurse Kelly to ask for my histology report, she asked how I was doing, I said not so well, she asked me to send in all my post op lab reports for Dr Norman to review and this is the reply:

"Dr. Norman has reviewed the lab results you recently sent in.  He acknowledges they are not where he hoped they would be after removing such a large tumor.  It is unfortunate that you are not a candidate for anymore surgery since you have already had now a total of 3 neck operations.  Any further surgery would put your right recurrent laryngeal nerve at risk. We encourage you to work with your doctor for medical management of your symptoms"

 Pfffttt!  So much for the great and wonderful Dr Norman!  He told me after my surgery that because of the technique they use they didn't have to go anywhere near the laryngeal nerve and were directed directly to the tumour by the probe without having to dissect through scar tissues from previous surgeries.  Methinks I've just been told to bu**er off! He clearly doesn't accept failure very graciously!

Just hope FP eventually comes up trumps for me; he hasn't ruled out another surgery should FHH be ruled out and therefore pHPT definitely confirmed, as he wrote about it in his letter to Dr Levy.  Hey ho .....

Jasmine x
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