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

Bless your hubby and a good cry on the GP obviously did do the trick. I bet you are nicely glowing from all those X-rays but if it's what is needed then worthwhile.
Let's hope you get US asap and they start to get you diagnosed. Nice to hear that a hospital visit was actually positive in getting stuff done and not a wasted journey.
A xxxx

Thanks, Amanda - yes, probably because it wasn't Addenbrookes!!

Love Tigerlily xx

Jasmine I am glad the goods have been delivered. I think the hospital is right  that you need blood work to go along with the wee. That is how my endo does it. It does have something to do with the calculation serum cal and creatinine times urine cal and creatinine something like that.

Tigerlily sorry about you arm, hope you get the US soon.

Thanks, Kathi - at least the X-ray of the arm will show up any bone changes, as it did with the same hand.

If you google "Imaging in Hyperparathyroidism" you will get the paper of the same name that did it for me, in terms of there being a symptom of bone changes in the hands (sub-periosteal bone erosion in the middle phalanges of certain fingers) that is absolutely indicative of primary HPT. I have this in an early form and Jasmine most definitely has these changes.

It's not good to be so pleased to have such symptoms, but they are a clincher, according to this paper, for a diagnosis of pHPT.

Love from Tigerlily xx

Heard back from FP today following my 24 - not happy! Seems he thinks FHH is indicated and he is recommending we go ahead with the CaSR genetic testing.  I'm just not getting it....my calcium output was 4.2, which is only just below mid range (2.5 - 7.5).... I've sent him a return email saying of course I will agree to the CaSR test (but actually for me it's to rule it OUT not in....), along the lines of:

"I'm quite surprised really that FHH is indicated, particularly as it is so rare. I understand about the calcium:creatinine clearance ratio, however my understanding is that urinary calcium is usually very low with FHH and I didn't think mine was that low?  It also leaves me quite confused as to how I had three positive Sestamibis (including the one done in the US), an adenoma removed, followed by a persistently elevated calcium and inappropriately elevated PTH, low Vitamin D (in the insufficient range) and still very symptomatic.  Is it possible to have FHH AND primary hyperparathyroidism?"

What is it with the current preoccupation with FHH? I did some research on prevalence in the UK and, based on an approximate population of 64 million, the prevalence is around 800 in the entire population - 1 in 78,000 as opposed to 1 in 1000 for PHPT! I mean, what are the chances, seriously ..... deep sigh!


So I guess I'll be in the dreaded 'limbo' for the next God knows how many months waiting for the results of the genetic testing while I slowly fall apart....Strewth, give me strength.  Fausto, I know you want to be thorough after all I've been through but give us a break for goodness sake.....


Jasmine x

Hi Jasmine,

Grrrrr- this paratyroid issues is so complicated. Your letter is good and explains how you feel. Good idea to say you will have the genetic test- i agree with your regarding the result, best to rule out,we do know are own bodies.

With all these really "rare" disease that we have, as you say the likelihood is so slim- i think we should all buy lottery tickets , as the chances of winner that are also too slim.

i completely understand the "limbo" feeling, had the same thing today with my medical consultation.

lots of hugs

best wishes

Lozza 

Hi Jasmine,
Am trying to do catch up on posts, been a bit of a roller coaster ride last week, just emotions up/down, nothing happening medical wise and like everyone else just feel in limbo.  It just seems to me that unless your urine calcium is sky high that FHH seems to be the first diagnosis rather than HPT.  I have read that genetic testing does not give a conclusive answer either, more the likely or unlikely scenario rather than a definite.  I will have to do another 24 hr at some point, it was suggested that I took a course of Vitamin D first.  I don't see the endo until mid July so will have to wait.  I have read that low D, oestrogen, low salt and low calcium diet can all lower urine calcium levels but am finding it hard to find any information on relationship of calcium to creatinine.  My urine calcium in February was incredibly low it seems and my bloods were not done at the same time, I wonder if that affects the CCCR calculation?  I may go and see my GP and ask if I can do another before my mid July appt and stuff myself full of antacids as recently my stomach is burning itself up, yet another new symptom that FHH patients don't get.  I do so hope they don't keep you waiting for ages for the testing and that you find you are not genetically modified! 
Hugs Sue

Oh Jasmine 
That's such a blow I understand exactly how you feel. It is too much of a coincidence that FHH is rearing it's ugly head over and over again. Do they think that they can just diagnose FHH and all our symptoms will just disappear. 
On this small forum there must be at least 4 of us who they are questioning FHH that doesn't match the 1 in 78,000 does it. It looks like I might be in the same batch as you if Endo pulls her finger out.
Your letter really says it all and I may steal a line or two when I get that dreaded news as I'm sure it will come.
I know the feeling of falling apart, I hurt from head to toe, still getting headaches every day and neck, shoulders and back are v painful. I've snapped at everyone today and just had a massive row with my other half. So I'm feeling horrid. I'm feeling bad for you now as well, it's just not fair how much crap you are dealing with. 
How much can a body and mind take, I can imagine you feel quite close to the edge at the moment and I don't blame you.
Sending you lots of love & hugs.
Amanda xxxx

Oh Jasmine, he really is dotting the 'i's and crossing the 't's carefully isn't he? I think your case has stumped him and he's clutching at straws now. What a merry-go-round you're on... that you can't get off.

There does seem to be a preoccupation with FHH. In fact my Endo alluded to it when I was there last. He said something along the lines of not following that line of thinking and implied he didn't follow that sort of guideline because he was an independent thinker.

I hate the thought of you being in that dreaded limbo. It will be interesting to hear what he has to say to your email, however.

Take care and big hugs.

Love
Brigitte xx

Jasmine  I am sorry you are going through so much. I know the test will take a couple of months to get the results so you will be in a limbo while that takes place. There a lady from  the UK named Fay on fb who just let us know she tested positive for Fhh she said if anyone had any questions about it she would be glad to answer them. I really don't think you could have a parathyroid adenoma and FHH at the same time. But Iam not totally sure. Have they mentioned anything about mens1. hell maybe they can throw that test in while there at it. Also maybe after the test they can do venous sampling to find the bad gland. because I am sure they will rule out FHH. I am not sure what a 4.2 urine ca is in U.S numbers. I need Audrey.  Best Wishes xxx Kathi

Thanks everyone for your support and kind words.  Having slept on it - well, I went to bed anyway - I'm formulating a new plan in my mind about sending another email to FP outlining very respectfully all the reasons why I personally have doubts about a diagnosis of FHH, and why it is so important to me to keep pursuing the possibility of PHPT whilst awaiting the results from genetic testing (yes, I'm going to play they 'end of my tether' card....).  I just can't hack the thought of having to wait for the CaSR results and several months down the line having it ruled out (fingers crossed), and then having to pick up the PHPT ball and run with it again, having wasted so much time playing the waiting game.  Does that make sense?  I just feel that all bases should be covered and in a timely fashion.  

Kathi, which Facebook group is it, I think there are a couple? I occasionally dip into the closed group affiliated to the Norman Parathyroid Centre FB page and there are quite a few UK members on there, most of whom seem to be having, or have had, their surgery with Robert Hardy in Liverpool and he seems to be highly rated.  One of the UK members seems to have had a particularly traumatic few years and she is launching an awareness campaign on the shambles around diagnosing and treating PHPT here in the UK, starting with an article in her local newspaper this week, having already made comprehensive complaints about the mismanagement of her illness to some high rankers (careful to check my spelling there ..... but if the cap fits ....!) in the NHS and DoH, and got nowhere.  Be interesting to see how it pans out.

On we go .....

Jasmine x

Hi Jasmine
That make perfect sense to me, he must realise that you have been through so much you cannot just be set to one side to await the genetic results. There is so much he could do in the mean time.
There are an awful lot of "high rankers" we have to deal with going through this disease and good luck to that lady for launching a campaign about the diagnosis shambles.
Keep going I know how hard it is for you and your family but you will get there as I hope to myself one day.
Love n hugs Amanda xxxx

Oh, Jasmine - just read all this - nooooooooo!

But it sounds as though you have a plan - as you said to me, get on with it, girl. Get all the ducks in a row for your own satisfaction - and heck - go and have a consult with Robert Hardy for a 2nd opinion, if it helps.

I've had the arm X-ray results today - all "normal, no action" and specifically no bone resorption typical of HPT, like in the hands. I wonder if they also had the wit to look for osteitis fibrosa cystica - prob not - back to the drawing board on that one.

Hang on in there, girl, we're all behind you (me more than most - in the queue for FP).

Let us know what his reply is.

Lots of Love and Hugs, Tigerlily xx

Hi Tigerlily, there's an update on my FP situation in Amanda's FHH Clarification thread which I've tried to cut and paste into this one but it seems beyond my cognitive abilities this evening .... Grrr .... Anyway, update on the update - he was very accommodating and I'm going to see him again next Wednesday at the Princess Grace to talk it all through.

Jasmine x

Great news, Jasmine and bless himself. Saw the update. Don't forget, if you get stuck anywhere at any time near Colchester/Chelmsford we are only a few miles away. Cats would be happy for your company any time on the lounge sofa!!

Have a look at www.thewaytostay.co.uk, it should come up with a hotel in Hammersmith quite near the Princess Grace. They might not have a bar - but we can always walk out and get in some PG!

Love from Tigerlily xx

Jasmine it is the one that has the pinned post that Caryn pinned to the top of the page.

Oh, my goodness, Jasmine, what the heck is going on with your case here?!!!! I just now spotted all of this. Don't know how I missed it all until now, but I sure have. I guess I've been working too many hours at my clinic!   

I too am a bit baffled how all the doctors now seem to be looking at FHH, when, in fact, they know people have already been diagnosed with pHPT! What is going on?! You poor thing. I'm so sorry you have been added to that list.

Yes, if you need to play the "end of the tether" card, play it, and play it well! I have an extra deck here if you need any help! This is just horrible what these doctors are putting you all through! I am so very sorry about this. You have been through so darned much! I wish I had it in my power to take away all of this pain and misery from you all!!

Tigerlily, I'm happy the arm is ok. Well, I know it's not actually OK, but happy the x-ray was negative. Before my surgery, my forearms and shins ached badly. The forearms actually stopped hurting shortly before surgery. I know that makes no sense, but my body never does! The shins have not hurt now for about a month, so I'm hoping the bone pain is now gone for good! I never get my hopes up anymore, because I'm tired of being disappointed and crushed.

Kathi, as far as the urine calcium test here, my lab uses a normal range of 100-300 mg. I can only seem to locate 1 of my results at the moment, and it shows a urine calcium of 257. Don't know it that helps. Not sure how to convert your UK urine calcium numbers, but I will try to check that out on the internet. If I find the answer, I'll post it on here.

Audrey

Thanks, Audrey - it's just the one arm really, so maybe it's a touch of arthritis - or repetitive strain injury typing out all these charts and stuff!

So glad that your pains have gone - that's a good result.

Urine calcium: mine was reported as follows in case it's of any use to anyone:

Urine volume: 1313 mL
Urine Calcium: 6.2 mmol/L
U/Ca per 24 h: 8.14 mmol/24 hr (Range: 2.50-7.50 mmol/24 hr

I think I read that normal per 24 hr for a woman is around 5 mmol.
This reading of 8.14 was flagged up by the lab with an exclamation mark.

Love from Tigerlily xx

Jasmine
 You might have done this already, but did you request from Tampa your surgery report that also included the path lab report on the adenoma they took out. They should send that all to you.  Good news on seeing doc again.