On we go.... FHH v pHPT

First topic message reminder :

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

That has been a problem for some of his patients, he can act like a spoiled kid. Now some will bypass him and e mail Dr. P or Dr. Lopez for questions. I was praying in your case that he wouldn't come totally unglued. Fingers crossed that FP comes up trumps.

Oh Jasmine, it's not right that on top of all these symptoms you also have to deal with the egos of the specialists.

Come on FP, please can you sort this out?

Dee

Hi Jasmine,

I send lots of hugs, Mr.P is taking your case seriously and wants to cover the whole picture. He also needed all the info from Dr.Norman clinic, which he now has.

The one think i am learning about this illness is that the medical professional can't agree what to do with us, so how are we to understand. You have a very good team looking after you, which is the best you can do.

best wishes

Lozza

You know Jasmine you could very well have a chest adenoma that has not been found. Could be like mine in a location that would call for a different type of surgery not your typical neck surgery. After your results come back on the FHH maybe talk to FP about venous sampling to find the devil. I have heard that Dr N checks all the para glands in your neck but you can have more that 4.  I am sure you've thought of that already, My brain is on overdrive today.

Thanks Kathi, yes you're on fire today ......haha!  Dr Norman told me that because of the scar tissue from my previous surgeries they weren't able to locate and visualise any other of my PT glands so I could have at least one or more tumours remaining according to Dr Levy.  FP agrees that it could be an ectopic adenoma and he has said that if FHH is ruled out and he is convinced that I still have persistent pHPT then he will go on to do more localising studies including a 4D CT and selective venous sampling.  Just got to convince him then that this is still pHPT and not FHH!

Jasmine x

Hi Jasmine,

Wow! i can't believe Dr Norman's attitude, as far as he's concerned i removed a tumour from your neck, job done! even though you are still symptomatic of Parathyroid Disease!

FP is definitely on your case and i'm sure he will get to the bottom of it and i agree with Kathi an etopic parathyroid gland in the chest could be a possibility if FHH is ruled out.

You have had such a nightmare of a journey with this horrible illness and i hope you find answers soon.

Take Care

Diana x

Well, Jasmine, I am terribly disappointed to hear all of this! I cannot believe Dr. Norman would do this to you! I can't understand why he would not continue to try to cure you. I wonder if you lived in Tampa and could readily get in to see him, if that would make a difference. I mean, maybe he is thinking it would be rough for you to come back to Tampa to let him attempt another surgery, in case that surgery also might not be successful? Or maybe he is thinking if you did come all the way back to Tampa, and he would determine he can't further help you, you would have wasted a trip? But then I think, if you were willing to get back to Tampa, why would he not want to attempt another surgery? I guess it is possible that your laryngeal nerve really is at great risk here, but I can't imagine Dr. Norman would not be willing to at least TRY to help you! I am very disappointed!

Hopefully, FP will be able to help you. It sure seems like he wants to try, and right now that's what you need!

Ok, I really have to get back to work here. Love and hugs to you all!

Audrey

Oh Jasmine, what a shame that Dr Norman has brushed you aside in such a way. I'm sorry I haven't been around for several days to give you a virtual hug and lots of support. You do have other options with FP, so keep knocking on his door in every possible way you can!

I have read quite a few conflicting reports of Dr Norman and though I looked around the website when first diagnosed with HPT, I decided at the time not to take everything he said as gospel and concentrate on what was being offered to me here in the UK as I was never likely to go to Tampa for surgery. I like to see as much information as I possibly can, relevant to me and when that was disjointed or contradictory, I was so glad to find the forum to ask real people how they were coping or had coped. (I think it's probably because I'm more of a pessimist than an optimist and never believe everything I first hear, so want another opinion or ten   ) Perhaps Dr N can't cope with the fact that you didn't follow the statistics and that he wasn't perfect because you weren't cured for life. I'm really glad that you have FP on your case and that he's involved himself enough to get to the bottom of everything for you.

Love and hugs
Brigitte xx

Jasmine,
      Stay strong, I can see you are, and so glad to read that FP is taking such an interest in your case. 

     It is not easy not feeling well and having to keep asking for help.  I know.  I told my sister I felt like a person with a tin cup asking for help.  In my case I did not have high calcium's to signal a problem but yet I did have higher parathyroid hormone levels.   Glad you brought it to his attention that we need more understanding and more forthright  action from the medical community in regard to this d*** condition.
     We're behind you Jasmine.   ((hugs))

   Thinking of you,  
    Nancy

Had a really good appointment with Dr Miles Levy this afternoon.  He had received FPs letter and was in agreeance with the need to test for FHH and ultimately tighten up the diagnosis but said in his opinion I didn't fit the profile for FHH when he was going through the diagnostics with me and so had disregarded it. We went through everything again and I told him I was afraid that 'they' would pin the FHH badge on me and not consider anything further beyond that and he understood where I was coming from and agreed to check for everything else in the meantime.  He said I did fit the profile somewhat for pituitary adenoma with my symptoms, being post menopausal, peripheral vision is rubbish (he checked it today) etc etc etc and said he could see I was worried about something being missed, so today he did all the usual blood and urine tests, plus gonadotropin for pituitary function and next Wednesday I'm having an MRI to check for pituitary adenoma. So all in all a good afternoon's work.  I'm seeing him again on 8th August to go over the results, so at least by the time my CaSR genetics test report comes back all the results should be in and we can look at everything as a whole, which is what I was aiming to achieve, so I'm a happy-ish   today knowing that I've done all I possibly can to move things on a bit.

Jasmine x

Sounds great, Jasmine!! I know it is such a good feeling to know your doctor actually cares and wants to help, and it sounds like yours does. I still can't imagine why Dr. Norman wouldn't offer any of this advice to you. I am so disappointed in him at this time. So very sad. But it seems as though you have found the right people to help you there in the UK now, and that is wonderful!!

I too don't feel you have FHH, and I think Dr. Levy sounds like a very smart man to want to check EVERYTHING before making a diagnosis. I am very happy that you had such a good appointment today! YAY!!   

Onward!!

Audrey

Just so glad to hear this, Jasmine!! Cats all round          !

Did he test your visual fields formally or just with the pin? He dismissed a pituitary problem for me (using the pin) but I'm not so sure.

But enough of me - we celebrate - we celebrate!! You are using the waiting time so positively and trying to ensure that nothing is missed. Well done!

Crack open the Pinot G. tonight, m'Dear. I've already toasted you with the Rose-A - hic!

As Amanda once said - we can smell The Ritz scones from here - save some for us!

Lots of Love from Tigerlily xx

Just with the pin Tigerlily but the darn thing was virtually sitting on his nose each time before it came into my field of vision, in fact he asked if I was cheating!!! I wish ......! Yuppers, I can smell the brass polish on the Ritz concierge's coat buttons .......!

Jasmine x

Well done Jasmine you seem to have found the right caring people to make sure that everything is covered and you are diagnosed properly and cured. I'm happy for you too. Have a little celebration and look forward to getting that cure.
I'm sorting the dress out ready for The Ritz   
Lots of love Amanda xxxx

Wow Jasmine that good news. The more pieces of the puzzle they can put together the better.

Hi Jasmine,
That sounds like a really good common sense joined up appointment with some considered  thinking thrown in for good measure.  It must be some comfort to feel that every avenue is being explored to help in gaining an accurate diagnosis.  I do not believe you have FHH either!  I'm now looking to see if I can find any studies that mention Vitamin D levels in FHH, whether they tend to be normal or lowered as in PHPT.  Only finding snippets so far and nothing concrete either way.
Glad it went well,
Sue x

So pleased for you Jasmine   

I can't get my brain to keep up with me today but had to send you hugs and pats on the back for actually getting somewhere. 

Love and hugs 
Brigitte xx

Think I might be stuffed ....! I've been looking through my recent results before I see Miles Levy again on Thursday and if my calculation is correct my last urine calcium creatinine clearance ratio (done by Miles) is 0.005. The previous one done by FP, which is what set him off on the FHH pathway, was 0.0082, so the most recent one us even bleaker news given that to rule out FHH it should be above 0.01. We are looking at minuscule differences here so I'm hoping he'll consider it borderline and not rule out pHPT. I'm expecting my CaSR results sometime soon so if that comes back positive for FHH then I am truly stuffed and I think it's going to be a big struggle to convince him that I have pHPT as well given how extremely rare that is - not unheard of, just v v rare.

My last Ca done with Miles was 2.82 corrected (no PTH done then) and my results from the idiot GP last week are corrected Ca 2.62, PTH 6.8 so continuing to be consistently inconsistent, and just above the reference range and I have a feeling FP might be able to build a good case for FHH from that. But I have lots of supporting evidence to counter with and if push comes to shove I'll just bawl again and plead with him to continue looking for another adenoma/s. A lot will depend upon what Dr Levy says on Thursday.

Jasmine x

Well, Jasmine, don't forget my labs never made much sense at all when I was trying to get diagnosed with pHPT, so maybe yours just don't either! Hopefully, your doctors will understand this and continue trying to search for another adenoma. I know you well enough to know if you feel there is another one in there, there more than likely is!! Your calcium and PTH levels are still too high. I'm with you on this. I do think there is at least 1 more adenoma hiding in there! Don't give up. You've got us all here behind you!

Good luck on Thursday! I'll be praying for a very good outcome!    

Hi Jasmine

I'm not clear on why Miles didn't test for PTH with the last corrected Ca of 2.82. Surely he needs to know what the PTH is if he is still talking about HPT? And that corrected calcium is very very high. Don't let him test just calcium, I wouldn't. (Perhaps it just got forgotten.)

Last week's corrected Ca could just be lower, because sometimes it's lower, but the PTH is inappropriately high for that high calcium, so HPT must still figure in there somewhere. If it were just high calcium from whatever causes high calcium, the PTH would not be so high, unless HPT were implicated, is how I see it.

Carry on with the research, girl, and bawl at them when you have to. I can't walk into a doctor's office without getting all emotional these days. I calm down eventually, but it's tears all the way when I get through the door.
So worry not about that!

Love from Tigerlily xxxx

Thanks Dr Aud n Tigerlily for your wisdom. For some reason Miles Levy, and I recall him saying this to me, doesn't take much account of PTH numbers, just calcium. Tigerlily did I dream it or do I recall him saying the same to you? Weird..... I didn't think to ask him why at the time but I certainly will be asking that question on Thursday.  Does he have some progressive new theory about diagnosing HPT disease I wonder.....? Anyway, I need to get him onside and receptive to the persistent pHPT theory so that he writes to FP saying just that.

Jasmine x

Jasmine I do understand completely how you feel I too have this hanging over me. The only thing that's keeping me positive is that I did have virtually the same test levels before I had the adenoma removed, my calcium was lower at some points than it is now so surely if it was natural for my calcium to be higher than most peoples it would drop to a steady level and not bounce around like it is now and yours is doing the same thing. That is what I've read FHH means higher than normal levels but steady levels. Also Dr Norman states that some people have naturally low urine calcium output but still have pHPT.
Keep positive I'm sure you don't have FHH.
Sending you much love and hugs.
Amanda xxxx

Hi Jasmine
That was some of my hang up for so long was my urine calcium was mot below normal but at time would show up as just a little over normal. The last two 24 hour urine test has come up to the middle of normal and the high end of normal. I have another one to do in Oct so it better not set me back to well it could be FHH. grrr  that would undo me. Endo told me to that a couple of times mine cal/cre calculation was below 00.1. Now the last couple of times I seen him he said yeah you have phpt and we need to find the bad gland. So I said is FHH off the table, he said its always in the back of his mind. Okay I'm confused enough without say that. Good luck hugs    Kathi

Please forgive all the mistakes in my post above my brain is fried. My good friend had a birthday party on Sunday and I showed up on Saturday we where so embarrassed . They are wonderful people and we ended up going to a Indian  casino about 40 minutes from there house and had the best time. Of course we went back the next day for her party. I am still in shock that I did that.     

Believe me when I tell you, I have done more than my share of bawling at doctors' appointments during the past 4 years!    It seemed for a while I couldn't walk into a doctor's office without somebody turning the faucets on!!    When you are so exhausted, frustrated, depressed, and in so much pain and so sick, it is VERY hard not to!    I don't try to hold back.   I just let the tears flow.   I don't care anymore.

Kathi, that is actually very funny! It might not have been when it happened, but I can certainly understand how that could easily happen. My memory is shot too.

I have something funny to add to this. I think it's normal that we all have at one time or another looked for our eyeglasses when they were hanging on our shirts or even on our faces. Well, the other day I tried putting a pair of glasses on when I already had a pair on!!!! It actually took me a couple of seconds to figure out why my glasses just weren't going on my face! Now, how bad is THAT?!

Audrey