Update from Tigerlily

Hi Everyone

I've been promising an update for so long now that you're probably not expecting one. I've been hiding in dark cupboards and corners for a while with pHPT can't-be-a-sed syndrome since the consult with an endo at my local hospital which I hoped would produce a diagnosis.

I'm seen in the thyroid clinic at Addenbrookes and have tried to start a conversation with the endo there, but she for some reason will not talk to me about pHPT. I also see Dr Flynn at the Lipid Clinic at Addenbrookes and although he has read everything I've put in front of him and even plotted my blood test results on Dr Norman's Vitamin D chart, he has come down on the side of Vitamin D deficiency pure and simple. I hope he is right. It's a win-win situation for me whichever way a diagnosis goes. If I haven't got it then I shall avoid an operation. If I have got it, I just want an op to sort it.

Needless to say, I'm getting a bit antsy about this now and would very much like pHPT to be ruled out by someone who knows what they are talking about, rather than someone who doesn't "want" me have it for whatever reason.

So I've written to my local endo in Bury St Edmunds the following letter, which will serve as a good enough update on my blood results, symptoms etc for anyone who is interested.

"   Dear Dr ....
 

You kindly saw me in November 2013 for low Vitamin D/high-normal calcium/high-normal PTH.

After taking 50,000 iu Vitamin D for 6 weeks at your suggestion, I was signed off by your registrar as “all blood tests in the normal range” and not to be seen again until January 2015.

A fasting blood test taken on 24 March 2014 in Sudbury and analysed at West Suffolk Hospital has given the following results:

Vitamin D            73.10 nmol/L (so I am hopefully not now deficient in Vitamin D)

Serum Calcium     2.49 mmol/L (range: 2.20 – 2.60)

Parathyroid H.      9.46 pmol/L   (range: 1.60 – 6.90)


Given my symptoms as reported to you in November 2013 of low mood/depression, cognitive slowness, impaired short-term memory, extreme irritability, osteopenia at left hip Dexa -2.5, bone pain in left knee, right elbow/forearm/both wrists, kidney cyst, ovarian cyst, gallbladder polyp, high cholesterol, low thyroid function, and strange bone growths on the top of both feet, I hope you don’t mind me asking if this raised PTH level something I should be concerned about ?  "

I've just read out this letter to my husband and we have had a good laugh about it. If you can't laugh occasionally in the shadow of this disease, then it's a poor show, is how I see it.

I will report back on what sort of response I get (or not).

Meantime, I hope everyone has been able to let go a bit over the Easter Holiday weekend. There will be a terrible clattering noise audible throughout the UK and US tomorrow, I'm sure, as we all get back on our horses and gallop on together!

With Love from Tigerlily xx

Well, Tigerlily, I am not a doctor, of course, but if your levels have been similar to this repeatedly, yes, I would say you do have HPT and need surgery to remove 1 or more parathyroid tumors. With a calcium of 2.49, your PTH should not be high, unless, of course, your normal calcium level is 10.0 or more, and your body is trying to get your calcium up that high. I converted your numbers, so it would be easier for me to relate. In US numbers your calcium would be 9.96 (or 10.0), and your PTH would be 89.2. When my PTH was tested for the first time, it was found to be 112.0, but my calcium was only 9.8. My endo also prescribed massive doses of vitamin D, thinking the problem was a D deficiency. I told her I was reluctant to take the vitamin D since my calcium was already at 9.8. I didn't want it any higher. My vitamin D rose to 98, but this didn't solve the problem. My calcium gradually rose. Vitamin D deficiency was NOT my problem! I'm not so sure it's your problem either! I think maybe your doctor is wrong.

Audrey

Is it my imagination or does Vitamin D deficiency seem to be the default diagnosis for endocrinologists who dither over parathyroid disease, probably because they just don't properly understand it?  Grrrrrr .......!

Jasmine x

Hi Tigerlilly
Good to hear from you, surely it must be obvious to your doctors that it's not vit d deficiency with PTH levels that high after taking supplements. They need to get their heads out of their a***s and sort you out.
How's things going re the ovarian/kidney cysts, what are they doing about those what explanation do they have for all these other symptoms you have !!!!
I think my post Easter canter is developing into a gallop. Roll on my Endo appt on Thursday   
Keep pushing Tigerlilly they must start believing you soon.
Amanda xxxx

Yes Tigerlily, so sorry, I got so incensed by the whole D deficiency thing I momentarily lost sight of the focus on your personal struggle; it's so infuriating and demoralising to be just left hanging ........!  Sincerely hope you get some positive outcomes soon, you've had such a tortuous process .....! I'm waiting to hear from Miles Levy this week so I'll let you know how I get on as I know you may be interested in seeing him at some stage.  You just need to hear someone say yay!

Amanda, you've had to wait so long for your endo appointment, and now it's almost upon you ..... I so admire your patience, tolerance and resilience with all that you've had to deal with - you're one strong lady! I've got everything crossed for a good outcome!  You so deserve some positive news!

Jasmine x

Hi Jasmine
Thank you, I think we've both been through the mill and you really deserve to get this sorted out once and for all. 
I seem to have everything on hold at the moment and I'm suffering a bit because of it.
My appointment will be exactly one year almost to the minute when had my first opp. When I think back I was so optimistic it would be over and I would cured after probably 5-8 years of being unwell fighting for a diagnosis. 
Still here I am still fighting like you Jasmine and I won't give up until I get well, whatever that entails.
Good luck with Miles Levy I'm keeping everything crossed for you, it's making driving quite difficult   But I'll manage. Onwards and upwards PTH warriors there is light at the end of the tunnel, even if they haven't finished digging that bit !!!
Amanda xxxx

Amanda, good luck with your appointment on Thursday. Hopefully, this will be the last before you're on your way to surgery again to cure you of this hellish disease! So hard to believe those little parathyroid buggers can cause so much trouble and make us so sick!

Jasmine, you and Amanda both, along with many others dealing with this disease, are all very strong people! It is bad enough going through this crap once, but to have to deal with it repeatedly???!!! That just isn't right at all!! I do hope some day doctors and surgeons learn enough about this disease to diagnose much quicker and also learn how to perform the surgery so it only has to be done once!! There is way too much suffering going on here!

Audrey

Hi Everyone

Thanks all for your caring support and I hope the appointments go well this week, Jasmine and Amanda.
Amanda - are you going back to M da K's place for your appointment this week?

Just to reply to your questions:

The kidney cyst is being left alone, as is the gallbladder polyp (which could disappear of its own accord apparently).

The 4" ovarian cyst has not grown in 4 months, so I'm opting for conservative watchful waiting there, as it doesn't cause me any great problem. It will be re-scanned in 6 months' time.

I'm seeing the foot-and-ankle clinic at Ipswich Hospital next week for the bone lumps on the top of each foot. I hope these are PTH related and will disappear (as osteoporosis can reverse) if I ever get the pHPT op. I don't fancy having them removed (aaargh!) just yet, although the flat, open shoes I have to wear so as not to aggravate the lumps are affecting my street cred somewhat.

I'm close now to asking my GP to refer me to the Endocrine Clinic at Hammersmith Hospital to see Fausto Palazzo. I've spoken with FP's secretary this morning and she's told me to get myself referred to him by my GP and that the Clinic will take care of any further endocrinology input that is required. So I'm feeling a bit better today now that I've made some sort of decision. (Jasmine: it seemed more logical to get it all done at the same place, rather than go to Leicester, and then have to go to Hammersmith anyway at a later date for an op, maybe. The jury's still out on whether I'll go to Tampa or not - just taking it one step at a time.)

What pushed me in that direction was that I stumbled across this site which I think was developed by Fausto Palazzo himself and contains a lot of very useful information on the pathways doctors should be taking for diagnosis (as FP is on the UK panel that devises the guidelines):

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

I'll put the address in the reference section as well.

As I think I have said before, it's a win-win situation for me whether I'm diagnosed or not. If I'm not, then I'll avoid an o;, if I am then I would hope the op would free me from some of these symptoms (especially the cognitive slowness, ones) - but I want the person who decides to actually know what they are talking about, instead of just tinkering with my Vitamin D levels (ye gods ....!) or trying to tell me that my low Vitamin D level over a year ago is responsible for my high-normal calcium and high PTH levels now.

Rant over - thanks for listening, all - and I look forward to hearing Jasmine's and Amanda's feedback after their appointments.

Love from Tigerlily xx

Oops - got the site wrong:

Seems to be a "us." at the front, that I missed:

http://us.bestpractice.bmj.com/best-practice/monograph/133.html

Tigerlily x

Hi Tigerlily,
Thanks for the info regarding Addenbrookes, i can honestly say they are totally obsessed with vit d . my first bloods showed pth of 11.7 and normal vit d, but still the registrar went on about vit d def, i told him " i didn't have a vit d problem" it has only been more recently.

I will let you know how next appointment goes as have now been on vit d for 3 months.

regarding your blood test, your PTH is high, they need to take this seriously also if this blood was taken early in morning than your pth would be way high by early afternoon.

Why are they waiting till 2015 ? is this another "wait and see approach" like i am having, if so what are they waiting for...

as you say either we need surgery or not, all i want and i know you feel the same is the truth, i feel i haven't been able to accept any of this, i think your letter is great, maybe also go back to GP and see what they say.

The registrar at Cambridge did say they have to investigate if you have a high pth level. Have you had anymore Bloods done with PTH, Bone profile etc done ? or a neck ultrasound ?

out of interest Mac the knife has written a kindle book available on amazon about patient with pth. i don't have a kindle so haven't been able to get.

thanks for the links regarding best practice, clearly need to do some more reading on this and prepare myself for next appointment.

Good luck to all with Hospital appointments coming up.

regards

Lozza 

Eh? Mack the Knife has written a book about Parathyroid disease?   

I've got a Kindle so I'm off to Amazon now to take a look......

Jasmine x

Hi Tigerlilly
I'm glad you are being monitored for your various !!!!! Problems I hope they are keeping a close eye on you.
No I'm not going back to M the K after his apathy following the op I had with him I have severed all ties with him and (if I get diagnosis) I think I will ask to be referred to F Polazzo at Hammersmith. I don't want to jump the gun so it's a big if ATM.
I'm going to look up the book MTK has written !!!!!    
Amanda xxxx

This is the description of the book:

"Product Description
A patient's guide to parathyroid disease is designed to inform and educate about the parathyroid glands. The mini-book describes how they work and how they go wrong. Patients will learn what the key symptoms are and how to recognise and diagnose the disease which is often poorly understood and diagnosed after many delays. Treatment options are also discussed in detail."

Mini book indeed at just 38 pages long but it's only £1.84 so I've downloaded it to my Kindle.  Book review to follow in due course.....

Jasmine x

Jasmine I'd be interested to see what he says before I give him my £1.84 !!!!!
I've had a squint at the sample on my iPad but just description of what glands do so I couldn't judge.
I'll download if worthwhile I'm looking forward to your review.
A xxxx

P.S
I wonder if he used us as examples. 

Have downloaded his book onto my PC (perhaps you could do the same, Lozza? you don't actually have to have a Kindle apparently).
It's written very simply (a bit dumbed down actually ..) and makes a great play about being symptom-free on days when your calcium is "not that high" - as if we had the wits or the wherewithal to get that checked out on the day!
Back soon when I've finished it.

Love from Tigerlily xx

PS Amanda - glad you're not going back to him. Please keep us posted on your consult with Mr Palazzo as I might be following you there! All the best xx

Hi Tigerlily and everyone,

i did wonder if the book was any good. I tried to down load the computer app- but my wifi connection is a bit slow, so did give up. I was also thinking of hammersmith - imperial college endocrine clinic seems to be one of the oldest in the country. not sure how much surgery is ? perhaps we could get a discount as being a "group" ! ( soory this is just my sense of humour, which help keep me going )

i would be interested to hear  book review,  might also let the endocrine consultant team know about it, if it was any good, especially if it says not to rely on the vit d issue.

bit tired tonight as my next b12 injection is due and i can't get this done, till i have my bloods done on thursday- as they want to test b12 as well,but before me next injection. bad timing i guess.

best wishes

Lozza 

Now that must be some interesting book from what I've heard about this man from so many on this forum!   

Yes, I wonder if any of you are in the book! Can't wait to hear all about it!

Audrey

Night, night, Lozza - have a good rest so you're on form to give blood on Thursday.

I know what you mean about the Vitamin D issue - most GP's seem to have been "on the Vitamin D course" recently and are proud to be able to put you on the 50,000 iu per day regime. I've done it twice now!

Yes, I take your point about the PTH being that high early in the day, so it would be higher as the day goes on. I try to make sure I have all my blood tests in the fasting state and as soon as the clinic opens around 08.30h to try and get a consistent picture. I'm also one of those who has a high albumin for my serum calcium gets adjusted downwards each time - still trying to get my head around that one.

Goodnight all, and sorry to leave you alone, Audrey - we'll be back soon.

Love from Tigerlily xx

Thank you or thinking of me, Tigerlily. That was funny when I read that, because as I was reading your message, I was feeling sad that everybody is leaving me.    If anybody is still awake there in the UK, Goodnight!

Audrey