I just don't believe it!

Hello Everyone      (my cats, Tiger and Lily!!)

If you are wondering why I am in playful mood after today's earlier morose posts, it is because something has happened today that I thought would never happen - a diagnosis - in writing - at last - from a rheumatologist I haven't even seen!

I knew my GP was going to refer me to one because of the bone pain, but it would appear that they have corresponded between themselves in double quick time whilst I was away seeing Dr Levy, and the outcome is this letter from the rheumy back to my GP (extract) a copy of which I have received today:


" Thank you for your letter about this lady. Looking at her results, she has on a least one occasion had a serum calcium outside the normal range - 2.73 in June of last year. At that time her PTH was towards the top of the normal range which would be inappropriate.                                                                                   (my emoticons).


I think she falls in the category of so called normocalcaemic HPT where quite often the serum calcium does go into the abnormal range and the PTH levels are inappropriate for the serum calcium even if within the reference range.                                                                                                                                          (my emoticons)
                                                                     

This lady has got quite widespread musculoskeletal symptoms.


I have passed your letter on to .... in the first instance. I don't think that I am the right person to see this lady given that her problems are probably in the Endocrinology primarily.

I did look at the X-rays and to my untutored eye there perhaps is some evidence of sub-periosteal change.   "

            


I can hardly believe this!

This same diagnosis was first made on 18 March 2013 by a GP who has now left the local practice. She and I did not get on at all - but she did write to the endo at Addenbookes monitoring my low thyroid issues (yes, THAT endo) to say that she thought I had normocalcaemic HPT. When I next saw that endo, she shuffled the (clearly visible to me) letter from the GP under a pile of papers on her desk and would not discuss with me the matter of HPT. Neither would she agree to a 24-hr calcium test in view of the high-normal blood calcium - "absolutely not necessary".

So I went straight back to my GP and asked him for the 24-hr urine calcium test which came back at 8.14 units of Ca/24 hrs (around 5 is average for a woman). Not only was my serum calcium high-normal, but I was/am also excreting it in my urine - so there must be plenty of it being taken out of my bones into my bloodstream for this to be happening. As I have said, I think I have had this condition for much longer than has been thought. At least as far back as a serum calcium level of 2.56 in 2005 that I have a blood test record sheet for.

I shall be writing to the Rheumatologist to thank him for taking the time to seriously consider all my charts and information that had obviously been passed to him by my GP, and giving his opinion without even seeing me - and you can all guess to whom I shall be addressing other (more blistering ...) letters very soon, can't you?!!       

I am in total shock about this (I know, diva alert, etc. etc ...). I really never thought the day would come when someone would agree with my estimation of the situation - let alone put it all so clearly in writing about the inappropriateness of the Ca/PTH relationship within the blood tests. I had hung my hat on this peg right from the very beginning, and felt supported in clinging to this by Simon and everyone on the old forum, and now on the new one.

I feel so blessed to know so many people in one place who care. Thank you all for your support and affection. This is indeed a happy day for me!      


Just before I go off and have a weep of relief, I should say that I saw the locum Dr this afternoon about my head/jaw/face/teeth/neck aches, my swollen lymph nodes and my drooping face. He turned out to be an absolute star and - guess what - he ordered the very same face and neck ultrasound that I have been trying to get all this time!    

Would you believe it?!

Lots of Love, and may it all come right for us all soonest - from Tigerlily xx            (love these emoticons!)

                               
Congrats Tigerlily, fantastic news   and all the better because you weren't expecting it, love surprises   

Onwards and upwards my dear.

Nelly

Is wonderful to hear some good news, about time:-)

Oh Tigerlily, I have shed tears ......! Yay, yay and thrice YAAAAAAAAAY!

This just made my day, dear friend .......         

Will you send a copy of the letter to Dr Miles for his information, or how are you going to play it .....?

I've had a really rough few days - well, over a week of it really - but news like this lifts all our spirits     That's a little tear of joy, not sadness!

Keep us posted on your next move Tigerlily - big cuddles for Tiger and Lily!

Jasmine x

Hi Tigerlily,

I am in tears also, you have been through so much,once again Addenbrookes need to pull their socks up, you need a bit of time to take all of this in. They are medical people, it shouldn't be such a task to be told what we know we have.

You can go forward with this, by the way, Mr Wishart does private parathyroid surgery at Spires in Cambridge and left Addenbrookes in 2011 !!!

congrats, i wish i was there to see the endo reaction when you tell her.  

best wishes

Lozza

Yay! This is great news and so encouraging for all of us that there is light at the end of the tunnel.

I hope that things move quickly from now on...

Love
Dee

Thank you, Nelly and Meggy, I'm still taking it in!!       

Bless you, Jasmine - so sorry to hear you're in a low period - but thanks for the Yays - I think I heard them all the way from Peterborough to Sudbury!! And Tiger and Lily have been cyber-cuddled from you. Big little rough-tongued licks back.        

Yes, I'll send a copy to Dr Levy when I get my appointment for the Stromboli ultrasound. For the moment I'll be keeping my powder dry.    
There are several people who will be getting a letter, and I think I'll be writing the book as well!

My fear is that I've had pHPT since at least 2005 (Ca then 2.56 - just a stray reading amongst others, but no PTH or Vit D). My god, how long is that - nearly 10 years? And I think the bone manifestations have kicked in during the past 3 years, and I don't know what damage has been done there. Luckily I have read that a lot of the bone damage is reversible once the PTH adenoma(s) is/are out, so I'm hanging my hat on that peg at the moment in connection with my head/face/jaw/teeth/etc pain, which Nancy and I believe is pHPT related (possible HPT-Jaw-Tumour Syndrome, but OMG I do hope not).

Peter tells me I have his wholehearted support in taking on the medical establishment on this matter - although this is from a man who managed to get himself banned from the local Specsavers for telling it like it was! He says I haven't to get myself banned from NICE in the same way, because I WILL be "going to the top" on this.

 I know there are others on the forum who could write the book too (straight to video, might be a useful learning tool for the medical experts, as well) and so if enough of us can manage to do this in our own individual way at some point we may just get all the goalposts changed for those who follow. It could just be our respective lives' work!

For the moment, I'll gird up my loins to deal with Addenbrookes on Thursday this week. I feel so much better now that I'm even ready for that! Can you hear me, LOZZA?!
I have so many letters now from various endo's and saddo's all shooting themselves in the foot telling me that there is no way I can have primary hyperparathyroidism, and several telling me that I probably DO have secondary HPT (due to Vitamin D deficiency - do look it up - Calcium is always low, not high, in Vit D deficiency, and anyway you only get secondary HPT if you are already on dialysis ...) that I shall have an absolute field day collating all this for publication. I know, I shall take care, but I have to have a bit of a non-pity party here for a change, it is such a result!!

I also have blood Ca/PTH/VitD results to come back at Addenbrookes as well as pituitary hormones Growth Hormone and IGF-1 (which together give a better indication of Growth Hormone levels than a spot-test of GH alone, apparently). So we shall have a lot to talk about. I will also politely ask for an ultrasound of the neck area. It will be refused, so there's no worry there. If it isn't, I'll just go and have it. The more the merrier. You treatment-tart, Tigerlily!!

I have no beef with the lady registrar at Addenbrookes who ordered a repeat of my 24-hr urine test (after the consultant endo - yes, THAT endo - said such a test was not necessary and when I did it via my GP it came back as 8.something, where the average for a woman is about 5). I'm sure the results will be as high again, and she was quite clear that if they are as high again I will be in danger of getting kidney stones, as she wrote back to my GP to that effect. Addenbrookes can mess up my blood tests all they like (and they always seem to!) but even they surely can't c..k up a urine test? Not so sure. We shall see.

Right .. must calm myself down now with a glass of wine. Please do chip in with all your suggestions/cautions/advice. I have been so grateful for this in the past and I continue to deem it a privilege to be able to contact you generous forum members with your knowledge and experience.

If SIMON is looking in, he must take a lot of the credit for this turn of events. Without his desire to make the way simpler for others, and his care and encouragement, I would never have started on this journey towards a cure for all that ails me - and believe me, rather a lot does!!

Love to you all - if I can get anywhere near the end of the tunnel, everyone can - and we will all continue to help everyone who finds us just as much as we humanly can.

Love and grateful thanks to you All, from Tigerlily xx

Hi Tigerlily,
Ohh what good news for you, definite progress!!  I really do hope and pray that you find some answers soon as to what is going on.
Good luck with all the letters, Sue

Hi Sue and Dee

Thanks so much - I will keep you informed "of my thinking, going forward" as they used to say in the NHS when I worked there (mental health section - couldn't have been more apt at the time!)

Lozza - thanks for the info on Mr Wishart - gone from Addenbrookes in 2011 - time they updated their website really - typical, eh?!

I'll certainly report on the meeting with the endo! Just biding my time at the moment,
but y'All will be the first(s?) to know how it goest.

Let us know what your plans are, Lozza. Both Nelly and I think you don't need endo#s any more!

Love from Tigerlily xx

Hi Tigerlily,

 Glass of wine, sounds good, you deserve it. If you are going to ask Addenbrookes for neck ultrasound, i saw Mr Nick Carroll- consultant radiologist, he is really good and allowed me to see pictures.

You go for it, in regards of your next appointment, take all the paperwork along, just be prepared for the " well, we didn't order this test, it has nothing to do with us..."  mind you i saw a junior, who was out of her depth. 

Out of interest, one of them said Dr Simpson is away for half term, ( i am just trying to think of likely excuses from them, just so you are prepared).in case she is the only consultant who deals with parathyroid.

You have a lot of info, they just need to listen, they won't like being wrong, especially as this will be the second patient who has provided evidence that they have primary hyperparathyroidism.

We have strength in numbers, i am seeing my GP next week and will see what she says, hopefully she will also complain.

There is no direction with this clinic, they tend to talk about case studies eg Vit D, Fhh and effects of monitoring- lack of data,  and also meeting Surgery guidelines.

Ask for the follow up tests/ scans etc. If they say " They don't do scans, till calcium is really high" point out the new tv in waiting room that is asking for donations for scanners. Eg =Why ask patients for money, if you don't want to do scans !

thanks everyone, you have given me options to take, which is what we all need, after all it will be a surgeon who will advise me whether surgery is suitable not an endocrine.

Tigerlily, if they won't do a neck ultrasound, go back to the GP. They do need to start investigating parathyroid, rather than leaving us in the wilderness. 

lots of hugs of support, 

best wishes

Lozza 

Oh Tigerlily you are such a star, I shall just condense my message to hip hip hooray and send you as much love as I can. Fantastic news and keep girding those loins it seems to work ans who cares if being a treatment tart does the job.
Lots of love Amanda xxxx

Oh Tigerlily, I'm so pleased for you     The news has certainly boosted your batteries and armed you with more information!

It's great to hear some good news for you and has really cheered me up as I'm in a bad place with this horrible disease at the moment. You really deserve some recognition and support from the medical department somewhere and as this has come like a bolt out of the blue it must be especially cheering! Go you!!

Love
Brigitte x

HOLY COW, I just fell off of my couch!!!!! YIPPEEE!!!!!            This is FANTASTIC news, Tigerlily!! Oh, yes, I do remember that feeling! The day I opened Dr. Norman's email, telling me I did indeed have HPT, after him dismissing me 2 years earlier, and after fighting and arguing with 3 different doctors for 3 long years, I just sat here and cried and cried!!! Oh, how I wish we could all be together at this time to celebrate with you!!! I am so VERY happy for you!!! Can you tell?!! I knew that someday a doctor with some common sense would diagnose you. I knew there was a good goat or monkey out there somewhere who would have enough intelligence to get you to the next rung of the HPT ladder! CONGRATULATIONS!!!!!

Audrey

Wow Tigerlily such great news you are getting there girl.

Hi Amanda, Brigitte and Kathi

Thanks for your comments and good wishes - I've been sitting here re-reading the letters this morning and planning my next move!

Audrey - thanks for sharing the good feelings and I agree, it's at moments like this that we should be all together, dancing about with our hands in the air and hugging each other and muttering "goats and monkeys" ! 

You are right: it just needed someone with some common sense to read what I had written about my symptoms/blood results, rather than allowing their eyes to glaze over as soon as they saw my charts and info sheets. I had to write it all down to keep track of it all myself, but no-one else (except my GP more recently and his Rheumy colleague, after I asked to be referred to a bone specialist for the bone pains/growing osteophytes on the top of both feet, etc.) would look at it. They all wanted me to tell them what was the matter verbally, and we all know how difficult that can be with a pHPT brain.

Lozza - that is such a good suggestion about asking for scans! If they are asking for donations for the equipment why don't they wish to use them! Brilliant!!

THE PLAN (BUT ALL COMMENTS WELCOME - PLEASE!)

I think I'm going to ask tomorrow at Addenbrookes for a DEXA scan of my right arm, which is the most painful, but they refused to scan it at my local hospital when I had the first DEXA because "we only scan the non-dominant arm". If they say that again, Peter tells me I should say I'm left-handed! And I will.

My left hip is playing up today (where the first DEXA did show osteopenia) so I will be mentioning that, as well as the bad wear and tear that I have now in my lumbar spine.

Also, I have this strange accumulation of fluid under my right jaw area and (I have only just realised this) I expect it is the weight of the fluid that is making that side of my face look as if it's drooping down to that side.
So I plan to ask for Nick Carroll to do a jaw/neck ultrasound. (Thank you, Lozza.)

If they refuse or waver in any way, it is at that point that I shall produce the Reumy letter diagnosing pHPT.

The letter dated 18 March 2013 (yes, 2013) sent to the Addenbrookes' endo (yes, that endo) from my GP who has now left the practice saying that I may have normo-calcaemic pHPT and asking her for a referral letter to my local hospital for the GP to be able to arrange an ultrasound/sestamibi I shall be keeping in reserve for the moment. That is the letter that proves that errors have been made. And if I find I have developed bone problems in the 12 months since the date of that letter because it was not acted upon (it was ignored by said endo), then heads will roll (but I'm not quite sure how, just yet).

PLEASE CHIP IN HERE EVERYONE WITH SUGGESTIONS AND COMMENTS AND ALTERNATIVE VIEWS ON HOW TO HANDLE THE SITUATION TOMORROW - THEY WILL BE MOST WELCOME.

Off now to shuffle a few papers and get my head in gear for tomorrow.

Love and thanks to you all for your support - from Tigerlily xx

Mr Carroll is great and I have nominated him for one of there " making the difference award"-

Make sure you have info regarding your Vit D level as this is their main point.

All the best with Addenbrookes, you have the info to go forward with this.

best wishes

Lozza

Thanks for this, Lozza - it makes such a difference to have someone make suggestions who is "on the inside", so to speak!!

I'm sure that with our joint experiences of the place we will be able to effect some changes there - whether they like it or not.

Yes, got the Vit D info - my level is good at the moment, so they can't blame the rising PTH on that.

Have you made any plans yet, yourself? Or are you still considering what to do next?

Will report back on the consult tomorrow - thanks again for your help.

Love Tigerlily xx

Good luck with Addenbrookes.

Best wishes

Lozza  ( i was trying to find an emotion that was doing a dance, closes i got was this one)

Thanks Lozza!!

I've decided to go to the top today and ask the registrar that I see to pass my blood chart and symptoms list to Professor Chatterjee, as I think he is the top man there in Endocrinology. Someone there has got to be able to take an overview of my case instead of trying to get me to take one medication for this symptom and another for that one.

Thanks for your good wishes - back later today!

Love Tigerlily xx

Tirgerlily I am glad that both of us are getter further ahead. Best wishes for you.

Just to let you know I bottled out of asking for my charts to be shown to Prof. Chatterjee, but he'll also be on my list of letter-recipients if it does turn out that I have pHPT!!

Love Tigerlily xx