Totally new plan

Hi Everyone

Just thought I'd tell you about my new plan. The letter came back from Dr Levy (after private consult at Spire Leicester £150) saying possibly "mild" HPT and he'd be pleased to see me at his Leicester Royal Infirmary Clinic for tests on the NHS. This was the previous plan. (Jasmine pointed out that he probably means "HPT with a mildly increased calcium level".)

Now that the side of my face is swollen, however, and since Dr Levy could not see it, but my hairdresser commented on it this morning, I'm thinking I may need to move a bit faster in case the jaw thing is something sinister, like HPT Jaw-Tumour Syndrome (usually affects much younger people, so I hope not). Symptoms are HPT, one or more kidney cysts, and one or more uterine fibroid tumours, plus the jaw problem. I have the full set. Would be me, wouldn't it?

So, instead of going back to Dr Levy for a barrage of tests, after which he would have to refer me to a surgeon at a later date who would only want to do all his own tests again prior to any treatment, I've decided to opt for going straight to Fausto Palazzo in London.

For info: it's currently an 8-week wait for an NHS consult with him, which isn't too bad, and the current wait for NHS surgery on the NHS at the Hammersmith Hospital is 18 weeks.

I've decided to invest £250 (London rates...) in a private consult with him and have booked it for 19 June. In the meantime, I'm waiting for the results of the arm X-rays done locally, in case I have HPT-related bone changes in the elbow/forearm/wrist (see paper Imaging in Hyperparathyroidism in the Reference Section) to match the ones already confirmed in my hands (and I'll be hopping mad if I do   ), and I've finally got an urgent US of throat/jaw area appointment for next Wednesday at my local hospital   . Yay!

I feel better already now that I've got a new plan and am better organised!

Hope things are moving forward for everyone this week.

Love from Tigerlily xx

Good plan Tigerlily!  Makes you feel so much better to have a plan in place doesn't it, instead of just floating around in limbo waiting for the next test/appointment/opinion.  I think you might be surprised and the wait for surgery at the Hammersmith may be shorter; 18 weeks is the NHS directive that treatment must begin within 18 weeks from initial assessment, so I think they all quote that as a matter of course, but the reality is that it is often a much shorter wait.  My elderly dad was put on the waiting list for a hip replacement last week and told it would be 18 weeks; I took a call for him from the hospital yesterday with a surgery date of 4th July!

One step closer Tigerlily!  Nearly there ..... I do think it's diabolical though that we should have to pay for private consults just to make some progress!  I'm fortunate enough to have BUPA for my treatment, however I don't have the all singing, all dancing policy and I do have to pay for consultations myself, but all tests and surgeries are covered, so I'm very fortunate, as I know this isn't an option for some.

Jasmine x

Bless you, Jasmine - thanks for sharing my elation at taking a positive step forward and feeling as though I'm getting somewhere.

That would be the icing on the cake if NHS surgery could be sometime this year! I had BUPA all my working life and feel a right nit now that I've let it lapse when I really need it. Hindsight is a wonderful thing.

Soooo glad the NHS have come up trumps for you, Dad! That is a real result, Jasmine. I bet you are pleased about that. Elderly people haven't the time to wait around for the NHS wheels to move so slowly in their grooves. That is just great news!

Yes, one step closer- thanks for your good wishes. Let us know what your next steps are when you get the results of your 24-hr test.

Love Tigerlily xx

hi Tigerlily,

good for you, thanks for including cost of this as I would also have to pay direct. I think the trouble is, there is no clear pathway for us or time limit and this comes across as confusing
 for us.

I happen to watch "Holby" last night on bbc1 and they had a lady that was really angry and they did blood shown high calcium, she than had a scan9 not told what type) and told she had primary hyperparathyroidism and need surgery which she had straight away- if only our journeys was as quick and less complicated.

At no point in programme was an endocrine mentioned !

wishing you all the best

Lozza  
 ps I see my GP for catch up tomorrow .

Hi Lozza

You're right about there being no clear pathway, and if don't have an endo on side (as I don't) no-one is directing the show but yourself. Luckily my GP is supportive, but didn't know much about HPT to start with.

Great that HPT appeared on Holby last night! It will at least get it over to people that it is a serious disorder that needs dealing with. Bet you were surprised to see it getting air time!

Let us know how it goes with your GP tomorrow. We'll save seat for you in the lounge at Fausto Palazzo's place!

Love from Tigerlily xx

Hi Tigerlily
Good for you as you know no one else is going to get their act together and get you cured. I'm so pleased for you that you have managed to get an appointment for 19th June. Get that US done next week and then you should have a quick result from that.
I would be following you down to FP's if only my Endo would decide if I'm poss FHH or not. If I am then I will get the genetic test done and take it from there. Simon had it done because of low urine calcium and he was proven not to have it through the test, so if there is a doubt it will at least prove it one way or the other.
She's even got me doubting myself now even though I have loads of symptoms, consistently high calcium and osteopenia but hey what do I know !!!!
I would like to know what is causing symptoms if it's not PTH and also what are the chances of having an adenoma removed plus FHH ?????
Amazing that even Holby can diagnose PHPT wonder if any of our combined Endos were watching perhaps we should take our cue from Holby and get really angry and then we'd get diagnosed.  
Good luck with everything, sending you lots of love,
Amanda xxxx

Tigerlily wrote:We'll save seat for you in the lounge at Fausto Palazzo's place!

Ha! With my blurred vision and dodgy cognitive processing, on the first read I thought you said Fausto Palazzo's palace - then it dawned on me that Palazzo actually does mean palace! I thought that was highly amusing, but then I do laugh at my own jokes sometimes - sad, I know!  Not so much a Freudian slip as an unconscious desire to be cured of disease by a touch from the king, as per the belief in olden times methinks.

Jasmine x

Oh, yay, Jasmine - and us princesses are all lining up to see him!

Love Tigerlily xx

Thanks, Amanda - there's a seat with us in the waiting room for you, too!

You could always go and see Fausto on the NHS to get his take on your situation. 8 weeks' waiting time for an NHS appointment is quite good. How long will it take to get the genetic test done? Is it one of those where it takes ages because they collect all the specimens from all around the country and then do them altogether? I think I remember Simon mentioning that, but not sure if it was MEN1 or FHH that was for.

It does get to the stage that you doubt yourself, I know.

Have a look at the paper Imaging in Hyperparathyroidism that I posted in the reference section. Resorption of the bone of the middle phalangeal area is a classic symptom of HPT. If you feel that area on those fingers, do you have to "go in" a way before you can feel the long bone? If so, you might have it, too. You could ask for a simple hand X-ray to check for it (as long as you make sure they know what they are looking for: sub-periosteal bone resorption typical of hyperparathyroidism, should do it).

When I mentioned this to Jasmine, she said she thought it was just the finger joints getting bigger, like in arthritis. But she thinks she has this bone resorption, too, and it's not the joints getting bigger but the central long bone between them getting thinner!!

It's worth a try, just for your own satisfaction. More X-rays, I know, but what the heck, it's cheap, simple and quick on the hands.

Yes, absolutely - what exactly ARE the chances of already having had an adenoma removed AND having FHH?
Brilliant question to put to your endo.
Very slim indeed, I should think - just like my middle phalanges!!

Good luck with it, Amanda, but don't wait too long. With all the musculo-skeletal stuff I've got going on, plus the rising PTH (12.7 now ...) and the jaw swelling, I think I might just be showing some really late chronic HPT symptoms of having had only a slightly raised calcium, but for a long time (my estimate would be since 2005).

Keep us posted and thanks for your valuable support - makes me feel a whole lot better.

Love and hugs from Tigerlily xx

Dear all,

I watched " holby" to help me get over my fear of hospital. I was very interested to see the parathyroid  patients, she went into hospital will heart problems- not sure if this was due to parathyroid problem as well.

When dr realised it was parathyroid they kept saying " she is really ill and can't help what she is saying" and was a completely different person ( I guess we all recogonize the emotion side)

they had support numbers advertised during end credits for diseases on show, of course nothing for parathyroid. but I guess we are the only support group for this.

perhaps we should send a copy to all our endos.

I think the thing that really hit home, was how this is classed as a serious disease- shame we are not getting support. make you wonder why ?

best wishes

Lozza 

Tigerlily, you're on a roll with the New Plan, so well done for thinking positively and taking control and I hope it all goes well for you. You must have been blessed with a phase of clearness for the brain as I really don't think I could order my brain into such clarity and make it connect the dots! It is a pity that you have to do all the work yourself and pay for it out of your own pocket of course, but it seems you have no choice. I'm floating around in Jasmine's limbo but at least I know things are moving forward, which doesn't seem to happen for so many of you. It's vastly unfair.

You've got me feeling for my middle phalanges on my fingers now! I've got fat fingers and big joints and can't really tell, though it's all quite fascinating. I think I'll ask my Physio about that next time I go since he's Head Bod of hand,wrist and arm. Perhaps I should also ask about whatever bone it is where your hand joins your wrist, (whatever it's called I can't remember, but it's basically tracking down from the little finger to where your wrist starts), because one of mine suddenly sticks out like it's growing extra bone on it or something. Whereas the other one is barely noticeable. Hey ho, something else is on the change.

Lozza, I didn't see Holby, but how interesting that they should have included HPT! And not included any support. Typical.

Love
Brigitte xx

Tigerlily,
     Your plan sounds very logical to me and I certainly understand why you don't want to waste too much more time in view of the symptoms you are having.  I think we are the only ones who can determine how badly we feel and if we need help soon instead of waiting.  I definitely see your line of reasoning as far as the length of time you have had suspicious labs and what could be going on with your bones.  I think I could be in the same position.  (I have the crunching sensation somewhere in the central maxilla area and full blown osteoporosis)
       Keep us posted. 

xoxo  Nancy

Hi Tigerlily
Yes the genetic testing takes ages 6 mths + I think   I'm going to wait and see what Endo comes back to me with, when she eventually gets all the info, scans, surgery & path reports. 
I'm not sure about fingers they do seem to go in a lot and knuckles are quite big but I think they may have always been like it I don't seem to have a lot of meat on them but if push comes to shove I'm happy to get an X-ray to see if it proves anything.
Good luck with everything.
Love Amanda xxxx

Thanks, Amanda - and good luck and hugs to you, as well.
Love Tigerlily xx

Hi Tigerlily,
I really hope and pray that you find some answers soon, it sounds like a good plan and will help to find out what exactly is going on, I really understand that one way or another you need some answers.
Take care
Sue x

Thanks, Sue - husg to you too.

Arm X-rays showed no bone resorption, so expect it's repetitive strain syndrome due to all this typing out stuff for medics I'm seeing!!

I've got an urgent US on Wednesday to investigate lump on side of my face and also do thyroid/PTH area - hurrah! It's only taken 15 months to get an US of the area!

Will report back on what they find.

Love Tigerlily xx

So no luck with the x-ray   I hope you have more luck with the US next week! If they can't find anything, they must be blind or looking in the wrong place! It's such a shame that you have to fight so hard to get anywhere, Tigerlily. I do admire your get up and go. Mine has got up and gone missing!

Take care.

Love
Brigitte xx

Thanks, Brigitte, bless You!

At least my GP could see the jaw swelling this morning, so that's a bonus.
Even Dr Levy said he couldn't see it, which upset me a bit, as it seems so obvious to me.
Even my husband can see it now - phew!!

We'll see what the US brings. Thanks for caring.

Love from Tigerlily xx

Hi Tigerlily,
I am so happy that you have your US booked, I know how all this stuff feels especially when no-one seems interested and you start to doubt what you can clearly see in the mirror.  I think they can get a pretty good idea from a US of what is going on so I truly hope they can give you some answers.  Have you investigated salivary gland problems at all?
Thinking of you,
Sue

Thanks, Sue - it's the incredulous look on some medics' faces that gets me. I'm grateful that they don't "want" me to have anything wrong with me, but I do want some of this stuff actually ruled out with some proof!

That's good that a skilful US can give a good idea - I intend to make the best use of her time!!

Well, the lump doesn't seem to me to be in the salivary gland area, but that's a good thought. My husband had a benign lump removed from his, but it looked a bit more "in his neck" rather than on the side of his jaw. It's a good thought though, Sue, thanks, I'll cling to that!

Love from Tigerlily xx

Tigerlily 
Good luck with US I'm glad GP and Hubby can see it now, I'm sure it will show up well on US. 
I know the docs don't want you to have anything but that is not the b****y same as you not having anything wrong with you! and you so clearly do have something.
Hang on to that US person until they identify what is going on in there and don't leave the room until they find it, obviously if they call for security you may have to give in   
Keep strong, love Amanda xxxx

..... and it would be great if you could persuade/push/cajole them into having the report available ready for your appointment with FP the following week in the event that it may be significant.

Chins up girl, nearly there! 

Jasmine x

Chins !!!!! Jasmine xxxxx

Thanks, Ladies - that's so funny Amanda - if something shows up, I shall plaster the negs to my forehead when we go for tea at the Ritz!

Yes, Jasmine - our local hospital is coming up trumps lately - I've arranged to have all my scans over the last 12 months or so put onto a disc by the lovely Emily in the PACS Radiology department - £10 for however many discs are needed (and you can have 10 if you need them) and £1 for postage!

Suffolk is in the 21st century for data recording, it seems!
Shame they couldn't get their act together in the same way for a diagnosis.
But I've got it now, which is what matters at the moment.

I've just read a couple of reporst on HPT-Jaw-Tumour syndrome - frightening reading, actually, but if the HPT is caught early enough then these jaw tumours often regress of their own accord. I'm clinging to that thought, too.

Yep, chins up and hey ho, Silver!  Will keep you posted.

Lots of Love from Tigerlily