Consult at Addenbrookes

Hi Everyone

I had my routine consult with the Thyroid endo's (yes, that endo) registrar today, and I have to say this registrar is a star and will go far. She listens to what I have to say, even if I have to interrupt her to keep going and not lose my thread in the conversation) and graciously accepted all the charts, print-outs etc that I left with her.

She does however have to refer to the Honorary Consultant Endo before she can agree to anything, but today (probably just to get rid of me) I got most of what I wanted: 

1. Due to the increasing pain in my left hip, lower back and right arm/wrist/hand, they agreed to a DEXA scan at Addenbrookes because "it would be a good idea to have a baseline scan here" (translation: we don't believe the results of the one you've already had at BMI Bury St Edmunds that show osteopenia of -2.0 at left hip).

2. Due to the fact that I now have a degree of fluid accumulating under the right side of my jaw and some bone pain on that side of my face, they will now agree to an US of that side of the face and include the neck/thyroid area to check for a PTH adenoma (that they are sure I have not got). I also asked that their Consultant Rediologise Nick Carroll should do the US (thanks, Lozza, getting picky now ..) but the reply came back from the endo that their Dr Bremmer would be the best person to do it. Hey ho, foiled again, but at least I'm getting the US.

So it's see the registrar again in 3 months' time, by which time the DEXA and US should have been done.

I did mention however that due to all the bone manifestations I'm still favouring primary HPT as a diagnosis, and I was told - wait for it - yes, we agree that you have HPT, but it's secondary HPT due to the Vitamin D deficiency that you had in February 2013. Your calcium is now low (corrected calcium, that is - they never take serum Ca into account), but your PTH may be a little high. This sometimes happens with Vit D deficiency, and we are sure you don't have primary HPT and your PTH will now get back into line. Translation: we are humouring you with the US scan and we are absolutely sure that Dr Bremmer will not find anything untoward (is he the student, or what??).

I should add that my calcium of 2.49 and PTH of 12.7 are the results of blood tests at our local hospital - where the experienced ladies can get blood out of a stone and there is no problem with my veins which don't want to give up any of the blood I've got.

When I have blood taken at Addenbookes however, they have to try all 3 arms     and really struggle to get the blood out. In addition to this, Addebrookes' results (taken in the fasting state and only marginally later in the morning than at the local hospital, i.e. 9-10-ish in the morning) came back as serum Ca 2.43 (no range given) and PTH 5.94 (range: 1.48 - 7.63).

But look at the disparity between the results, even within their respective ranges! And Addenbrookes won't take account of any other lab results but their own. Their explanation is that other hospitals might use a different type of assay, and their's is the only correct one.

I do recall that someone posted on the forum recently that there had been a change in assay technique nationally that might point to a doubling of some PTH levels, so this might be where the discrepancy lies. But even despite that, the Addenbrookes' results still show a moderately high serum Ca with a high-in-the-range PTH.

And  - they are still telling me that I have secondary HPT due to a former Vit D deficiency 12 months ago. And Uncle Jim Norman (www.parathyroid.com) is at pains to teach that there is no such thing. That Vit D is usually low when Ca and PTH are high so as to prevent absorption of further Ca from the gut when the serum Ca is high enough already.

So there we are. Still struggling to get a knowledgeable and definitive diagnosis from our local "centre of excellence" but at least I have their DEXA and neck US in prospect.

Oh, and the 24h urine calcium result? Totally within range, Mrs C, at 4.60 mmol/24h (at the local hospital it was 8mmol - excessive for a female when the average is 5) !!   !!

Any comments or thoughts will be most welcome, whilst I go off and find a large glass of red Chilean!!

Lots of Love and P-e-a-c-e (do you remember having that? we really need it!) from Tigerlily xxx

Congrats !!
 they do drive me mad, i haven't heard of Dr Bremmar - will have to find out who he is. I know they do have an ultrasound machine in dept as the do the FNA test.

I would get the PHPT in writing !!
" the centre of excellence " bit did made me laugh.

well done, you have done it.  I don't think they have a range for the serum calcium,not mentioned on my bloods test, just the corrected calcium , top of this range is 2.50.I can't remember bottom range.

I am still awaiting my letter confirming my calcium test they forgot to do and what is  happening next !! I a have also requested copies of all my bloods, as i want to see what is happening.

best wishes

Lozza 

Hi Tigerlily,

That person posting about the change in PTH assay was probably me. I have become somewhat obsessed with working out how reliable my local hospital results are. 

Thing with PTH is that it breaks down very quickly once your blood is out of your body. So the way they measure it is by working out how many broken bits are there and estimating it. Different assays count different types of broken bits and it all needs to be calibrated for that particular machine on that particular day and upshot is that different labs have different ranges.

There was a report done last year which has a nice table of the different assays and the handling instructions for each.
http://edqas.org/download/Preanalytical_PTH.pdf

Here's something I learnt recently, when they take your bloods, the PTH container has a lilac top. This means it has EDTA, an acid inside the tube which helps preserve the sample. 

However, when I last had bloods at my GP they told me they don't chill the samples. So on a warm day they could easily spend a few hours in temps of 25deg plus before reaching the lab and returning a lower PTH result as a consequence. Which gives me little confidence really in the current system. Also, PTH varies massively throughout the day and tends to be lowest mid afternoon, but I've yet to meet an endo who takes the time bloods were taken into account.

I suspect that this is adding to the massive under diagnosis of pHPT in this country.

That and the fact I was told today at endo clinic that you can't have pHPT unless your calcium is over 2.6mmol/L. So I showed them Dr Norman's graph of 20,000 pHPT patients calcium levels and pointed out about a third of them have calcium levels under 2.6. The endo still insisted there was nothing they can do for me and they have discharged me, so I'm feeling pretty fed up.

But I am pleased you guys are making progress! We will get there and if we have to re-educate the entire NHS along the way then that's what we're going to do.

Love 
Dee

Oh Tigerlily
With one hand they give but with the other they take away. At least you are getting the Dexa & US 
What a pain they are getting obsessed with vit d. They just don't make the right connections do they. Have that large glass of Red and take a deep breath and carry on !!!!!!!! 
I do remember peace although it is a dim and distant memory, it will come again and when we have that tea at The Ritz we will reminisce about the bad old days.
Lots of love Amanda xxxx

Tigerlily I posted on another thread that we were finely getting there and really I feel we will. Glad your getting some scans done. Peace out and huggs

Tigerlily, this is Dr. Audrey here. After reading your post, I have diagnosed you, and that's all that matters!    If your calcium is at 2.5, your PTH should not be over 4.0 or so! Your PTH is way too high for your calcium level. Why, oh why, can't these doctors grasp this?!!!

I would like to remind you that my two 24-hour urine calcium tests were both normal, and for anyone new reading this thread, I had 2 parathyroid tumors removed in November! You don't need elevated urine calcium to have HPT!

And, yes, your vitamin D is as low as it is because your calcium is as high as it is. I too was diagnosed with secondary HPT the first time my PTH was found to be elevated at 112.0, my calcium was 9.8, and my vitamin D was 23 (all US numbers). I told my doctors that that diagnosis was incorrect. They wouldn't pay any attention to me. I guess they believe me now.

I still can't imagine why this is all so difficult for the doctors to learn!!!! If I was a parathyroid surgeon, you would all be cured by now!!! If I wasn't 61 years old, and my body wasn't shaking so badly, I just might consider it!

Dr. Audrey

Gee, thanks, Doc!! So glad to have your diagnosis - 'cos I've had trouble getting a decent one over here!

Bless you, Audrey - you are a trail-blazer for us all !

I've just re-read all the Vitamin D pages on www.parathyroid.com to re-convince myself that I can't have secondary HPT with a high normal calcium - the calcium would be low and I would probably have kidney failure and be on dialysis, according to Dr Norman.

But you do get to doubt your own knowledge and research, as we were saying somewhere else.

THANKS TO EVERYONE who contributed here and for your good wishes.

Thanks also to Dee for the PTH paper - very interesting - the labs seem to be doing their own thing and as you say there is very little standardisation with PTH assays, and I agree it must be contributing to widespread underdiagnosis of HPT. What a shambles!!

Keep on truckin', All - Love from Tigerlily xx

Hi Tigerlilly,
sorry i got a bit confused, are they now say you have secondary HPT ? due to past vit d being low ? as this has happened to me and i was put on vit d- all that happened was that my vit d became normal and raised my PTH, who knows what calcium is doing as they forgot the blood test ?

i think they should do the scans and look at the whole picture, They do like to get the Question regarding vit d and relationship to the parathyroid over with.

Looking at your posts, i tend to be seen in small rooms, by waiting area, they should off look at your face in a room with better light- clearly we need to purchase some lamps and printer ( for us to get some results) 

i hope you get some answers soon.

good idea about writing to Dr C, you can always do this for clarification on your condition in the future. i know he does alot of research in thyroid . 

best wishes

Lozza

Oh Lozza - no - that is exactly what is happening to me now!

They say my calcium is now low (at 2.45) and I have had secondary HPT for some months due to having had a severe Vit D deficiency in Feb 2013. My PTH is now 12.something according to my local hospital's lab results (but not to Addenbrooke's ....), but they dismiss all other lab results in favour of their own, and on their scale my PTH is 5.94 (Range: 1.48-7.63) so "perfectly within range". (Which takes no account of the fact that shouldn't both be even vaguely high in their respective ranges together from the same blood draw.)

I can't believe they think my calcium is now low at 2.45! It's lower than it has been, but still high enough for HPT
 - probably just one of those times when it drops back into the normal range.

Yes, I thought the same about the small consulting rooms off the waiting area - the lights are very bright in there - I've asked two trusted friends since then if they can see the jaw lump and they both said they could.

Yes, put me down for a contribution to the printer - but they can pay for their own bloomin' lights!!

Thanks for the encouragement about writing to Dr C. In the end I didn't ask for all my notes to be shown to him, but when I get myself organised I'll collate all my findings and write to him myself.

I did see a locum GP last week - and he couldn't see/feel anything there in my jaw either, but he did seem convinced that I myself could feel something from the inside, so he has ordered an ultrasound at the local hospital (to include the throat area - hurrah!!) which I shall put some heat under tomorrow if I can to get an US somewhere sooner rather than later.

Other wise I shall have to wait for Addenbrookes' to give me a US appointment or hope that I can see Dr Levy at the end of this month, rather than the end of July and get it included when I meet his expert US man, Strom Boli (I love that - sometimes a good laugh keeps me sane!).

Where are you at the moment with your HPT issues, Lozza?

Love from Tigerlily xx

Hi Tigerlily,

As far as i remember Addenbrookes corrected calcium is up to 2.50. So don't know why they say your level at 2.45 is low ? I had 1 calcium level at 2.38 ( their levels) and pth was at 7.5 ( lowest i have had ) they just wrote to GP and said" her calcium is normal at the moment " - now it has risen.

I would see if they have written to Your GP about their consultation and wait for scan appointment.

I am due to see my GP this week, i haven't heard from hospital regarding what they want to do next.... or what my calcium level is doing. I only know vit d is normal and high PTH , so i have requested copies of all blood tests and notes through data protection.

Out of interest, do they send you a letter after each appointment ? or just send to GP? 
Just trying to understand the system. I have also sent a letter to parathyroid consultant - as i would like some clarification on what we are doing next.

I think my GP will hopefully be able to look at the bigger picture,

i think we are both making progress- honest !

best wishes

Lozza

Tigerlily & Lozza you two are having fun NOT ! 
Why is it that the blasted doctors can't see what is staring them in the face, literally for you Tigerlily are they stupid !
I hope you both get some answers and Mr Levy and his "Stromboli" can find the stupid thing.
Lozza how do you get copies of bloods through data protection is that from the GP or the hospital ? 
As my Endo still has me sitting in the FHH chair atm (delivered latest 24 hr wee and bloods on Friday along with an email !!!!!!!)
I would like to see if anyone has a record of bloods done when I had my appendectomy in 1997/8 as I was a query for autoimmune disease vasculitis/lupus so I'm thinking I mat have had calcium checked then.
Thanks Amanda xxxx

Amanda, just remember if your calcium was checked in a panel of tests, ie., CMP or BMP, it may be lower than if it was run as a separate test. I noticed this has happened to me several times. For instance the last time I had blood drawn, my PA ordered a BMP and a separate calcium tests. My results revealed a calcium of 9.9 with the separate calcium test, but a calcium of 9.2 in the BMP!! I brought that to the attention of my PA the last time I was her. She had no idea why that happened. I talked to the woman at the hospital lab about this. She had a very snotty attitude and said, "Well, there's really no difference between a calcium of 9.9 and one of 9.2!" ????? I told her there most certainly is, and when you're trying to diagnose hyperparathyroidism, that difference is HUGE!! I am aware the separate calcium was sent out to a different lab, and their normal range is a bit higher, so the calcium levels might not really be that much different in that respect, but when you are trying to diagnose hyperparathyroidism, it is the separate calcium your doctor is using, and that 1 is usually higher.

Audrey

Hi Audrey that's very strange that results vary so much. The only bloods I had done were vit d PTH calcium & creatinine and that is all tested at the hospital lab but their range is up to 2.5 for calcium so it's always lower that at my local hospital which goes up to 2.6.
Amanda xxxx

Hi Amanda,

I looked at hospital website under access to medical records and they normally have a from for patient to fill out - you need to than wait for them to send a letter saying they have information that you have requested. You can also get copies of your scans, blood test results , Consultant / GP letters.

you do have to pay for this, can be £10 admin fee, plus cost of photcopies and up to £50 i requests scans on CD's etc. 

The catch is that a medical person, has to approve the request ! i think this is probably your own consultant, not quite sure on that, just a quess.

I think it can take up to a month, will keep you all posted if i get information.
I think for GP's you can also request to see your medical file, but i have always gone through the hospital, as it is their tests i want info.
Personally clinics should give us the info on tests when they have results, but this seems to be too much for medical people to cope with !

hope info helps

Best wishes

Lozza

Thanks Lozza that's very interesting and it would be historical hospital tests that I would need. I'll wait to see how you get on.
Thanks Amanda xxxx

Hi Lozza and Amanda - very useful info - thank you.

Amanda - the medical secretary to the GP I try to see each time has been very helpful in my case. I usually bypass the girls on reception if I can and just ask to speak to Dr B's secretary.

I asked her to ferret out the letters sent back to my GP after my BUPA back operation which took place in 1997, and she was able to locate them whereas the secretary to the guy who actually did the operation wasn't able to locate them at the private hospital!!

Yes, Lozza, the endo/registrar whom I see at the Addenbrookes clnics (Thyroid and Lipids) always writes back to my GP after the consult and I make sure I have copies of all those letters.

I can see what you mean about hospital blood tests, though. They might be more difficult to get hold of, and so I think Lozza has outlined the correct pathway for that in all her researches.

Best of Luck and Hugs from Tigerlily xx

Oops, Lozza, forgot to say that no I don't automatically get a copy of the clinic endo/registrar's letters, I request them from my GP.

Love Tigerlily xx

Hi Tigerlily,
Thanks for info, i have an Appointment with GP on thursday, so she might know what is going on. This is the first time i have been a regular at an outpatient clinic- 3 endo appointment so far. so am trying to understand the system! 
I get annoyed when they say we will write to you and than don't.
I am supposed to be a "mind reader" as well as my other talents in life ! 

best wishes

Lozza

Here in the US, at least here where I am, I just sign a release form when I have a test performed or blood drawn, and they will mail the results to me free of charge. My doctors usually have the results within a couple of days, but they never call me. I have to wait 6-12 days to receive the results in the mail, but at least I have them then!

Audrey