My appointment at Addenbrookes

Dear all,

I have had a busy time at the hospital, on monday i managed to walk through the doors and had my neck ultrasound, guy was really good and was a consultant radiologist, he asked about bloods, medical history etc and confirmed that i have a 6mm things which looks like parathyroid problem. He was keen that all this information went to my GP and Endocrine as i had an appointment today, he went out of his way to help me and passed report on straight away. i thought progress at last.

Well, today at endocrine, spoke to get another different registrar, who informed that the bloods i had done recently, they missed of calcium so couldn't confirm anything, i said you should have called me and just got a shrug.

Then , i was told, we see you had a scan this week, we didn't ask for this, i said my GP ask and was told " well some GP are over zealous and don't know what they are doing, we are the experts!" i kid you not.

The Endocrine parathyroid clinic will only do scan if you have a high calcium of 2.80 regardless of how high your PTH is...

i was told my PTH is high again, they didn't want to tell me how high and oh yes i also was told i might have a natural high calcium level, blah, blah, blah.

I am so angry, i said i feel sick a lot of the time and get bone pain etc- not interested till calcium gets to 2.80 !

I had to have bloods done to check calcium, and than we wait and see, monitor approach, i asked " what condition are we monitoring, either i have something or not"

Told, " There is a grey area of pHPT were some people need to be monitored before they do anything and they can't tell whether we as a group do have pth or not and they won't have data for this group of people, as never been done before till another 20 years !

i have made another Appointment to discuss this with GP, ( i don't think she will be happy with this at all) I just wanted to update as hopefully some of this inform, might help us to understand why some of us are waiting longer than we should..

I intend to get all copies of the 5 blood test i have had over last year, which they won't give me results for and discuss with my GP and more importantly enjoy the bank holiday as i bet the endos are enjoying theres

best wishes

Loose

This is outrageous. How on earth can they be so ignorant of all the recent scientific evidence? I feel like writing a complaint to them myself. Seriously, let me know if you think it would be of any use. I can't believe their arrogance. 

I know collectively we're all super grumps because of our calcium levels but is it any wonder when you get treated like this.

Stay strong,

Love Dee

I can't believe any of this, I feel so dreadfully let down on your behalf by that supercilious idiot. Why are these donuts doing a job of looking after the health of people like you if they clearly don't care about their patients and can't take notice of scientific evidence it's been arranged by someone other than themselves?  I hope you don't have to wait too long for your GP appointment so that you can talk to someone with some sense. Is there any way you could perhaps be referred to a different Endo or even another hospital? I can't understand this wait and see policy whilst your health is going downhill. I would have been cast out with your Endo since my calcium only went up to 2.79 once! I feel quite guilty that everything is moving on for me and the rest of you seem to be having such a monumental fight of everything and getting nowhere fast   

Big hugs and take care of yourself. Have a lovely weekend.

Love
Brigitte xx

Hi dee and Brigitte,

Thanks for words of support. I think they really took the hump, with having a scan result that " they didn't order" as to the rest of it, you just can't believe it.

I have an Appointment with my GP for Thur 5th June, i don'yt think she will be too happy with the comments made.

I am also going to ask about going to see a different endo. I am quite near to London, so if anyone knows of any names that would be good.

I will be interest to see how high the PTH level has gone ( didn't want to tell me) i had. The registrar said she would send  letter once they know my new calcium level,they want to discharge me to GP and wait and see. They don't want to say what we are waiting and seeing for.

Again i will tell GP i am not happy to do this at 41 and this is al impacting my life. I will wait for their letter and also send in a letter of complaint - as they are totally ignoring what one of their own Consultant Radiology is saying. But of Course Endo clinic know better.

I think they are just using the wait and see approach as research in to how this disease progresses. ( Fine but as a patient they haven't told me and this isn't mine choice with any of this)

But at least i know where i am with them , hopefully GP will have some ideas about where to go.

Thanks once again, you have both cheered me up.

out of interest how high has people calcium been ? with relation with PTH ?

best wishes

Lozza

ps-lets hope for a sunny bank holiday 

Oh dear that is so disappointing for you, what an idiot Dr.

My calcium has only ever reached 2.81 on one occasion yet my surgeon said i should have surgery asap, never any doubt in his mind. As i have said before he gets really annoyed with the "wait and see" approach that many Endos seem to take, absolutely no point in waiting or further testing.

I would consider going elsewhere if you can.

Nelly

Ps i haven't had calcium or pth checked for a few months but it's usually around 2.71 cal and 7.5 pth so neither very high.

What a shame!  This brings to mind the internist who laughed in my face when I tried to discuss HPT with her.   She pushed away the material I had printed for her from Dr. Norman's site.   She told me she didn't need to look at it, and she laughed.    As you all know,  I went on to have 2 parathyroid tumors removed! I honestly don't know what makes doctors think they are Gods and above learning anything new, but I know a lot of them who need their butts kicked REALLY hard!!!    

So sorry for your experience, Lozza!   Don't let it get you down.    Some doctors are simply idiots!   It's just a shame that it is we who continue to suffer because they are so dense!    Yes, I think Dr. Norman stated it perfectly.   They're a bunch of goats and monkeys!!    I can think of a few other names for them, but we will just keep it at goats and monkeys here.      

Hang in there!    I proved my doctors all wrong.   You can too.

Audrey

Oh Lozza I'm so sorry you've had this experience I know exactly how you feel.
I've had two Endos so far and neither have had the knowledge to diagnose PTH and don't have the interest either. At least the first one when presented with positive scans etc gave in and referred me for surgery but did say don't expect to feel much better afterwards!!!!
So I didn't go back to her when my calcium increased but I don't seem to have had any better luck with this one.
Love Amanda xxxx

Thanks everyone,

I have sent of request to get blood test results, my PTH has been 11.7. 9.5, 8.5 and 7.5 for test that i know results, so only the 7.5 was just in Addenbrookes reference ranges.

I have another 3 blood test results from the, which i don't know results, just told " you have had another high PTH" so keen to find out if this is higher than 11.7

I think my GP will be angry to be told she is an amateur and hopefully will suggest somewhere else- to dismiss my neck ultrasound scan , by saying " it doesn't matter what you scan says, your calcium needs to be , 2.80 upwards", oh yes this also had to be corrected calcium.

Does anyone have  a name of a good endo ?

Well thanks to everyone for picking me off the floor, the fight continues, in a way it is good that i know they are unable to deal with parathyroid. i intend to also find out how many parathyroid operations they did last year etc, for all i know it might have been none!

Well it is pouring down with rain here, typical bank holiday!!

best wishes to all and thanks again

Lozza

Hi Lozza,
I am so sorry to read how your appointment went, it just beggars belief that they have such condescending attitudes.  There appears to be a culture of punch in the numbers and if they tick the right boxes at the right time then we will action them.  There is no actual evaluation of symptoms a patient talks about, just signs that they take any note of and then only if it suits them as they can explain many away as "something else". I know exactly how you feel this morning, it is hard picking yourself up but at least the scan did show something.  I just want to give you a big hug and say sorry you had such a rough experience.
Pouring down here too, off to Peterborough as dh needs a new study chair, at least that is easily fixed, not like us
Hugs Sue xx

.....and it's tipping it down in Peterborougn too, Sue - stair rods in fact! We could have met for a coffee but only a fool would go out in this hehe.......  

Jasmine x

Lozza, I'm just curious; could you tell us what your calcium levels were with those PTH levels? The PTH levels alone are not helpful with a diagnosis. I'm sure you are aware of this. I was just wondering what the calcium levels were with each particular PTH level.

Audrey

Hi,
 
I have sent of for copies of my blood test done at Addenbrookes and this will include another  5 results.
 
Blood results so far
 
Serum calcium ref range (2.20-2.60)
Serum corrected (2.20- 2.60)
PTH ref range (
 
2012
serum calcium – 2.64 (hi)
corrected calcium -2.54
No Pth
 
2013-jan
Serum calcium – 2.61(hi)
Corrected 2.58
No PTH
 
2013- march
serum calcium – 2.66 (hi)
corrected – 2.61 (hi)
PTH-11.7 (Hi)
Vit D- 78
 
2013-April
serum calcium- 2.57
corrected -2.54
PTH-9.5
 
2013-july
addenbrookes test Slightly different ref ranges
 
serum calium – 2.54
corrected 2.38 (ref range-2.1-2.5)
PTH-8.5 (hi) (REF Range 1.48-7.63)
Vit D  -64
 
I have another 5 test I don’t have level
 
Told 23^rd may
Vit D is now 88 and my PTH is now high, no levels given to me and they had forgotten to do Calcium test, so I had another blood test done, look like when I have good levels of VIT D, This is certainly pushing up the pth and the calcium seems to be just over or just under reference ranges.
 
I do have 2 ultrasound reports which say I have a 6mm parathyroid “thing”, last radiologist said they wouldn’t be able to do a fine needle biopsy as there is too much thyroid tissue to go through, looks like my parathyroid “thing “ is within my thyroid.
 
I am very interested to know what the high PTH level is now doing.
 
Thought most welcome
 
 I am due to see my GP on June 5th and will see what she says.


best wishes


Lozza

What arrogant berks, I'm sorry you had to deal with that Lozza:-(

Well, Lozza, after looking at your calcium and PTH levels which were acquired from the same blood draw, I would say you VERY likely do have HPT! I am officially diagnosing you too!    Don't you wish I was your doctor?   

I still don't know why this is so difficult for these doctors and surgeons to diagnose. I just don't get it.

Audrey

lozza wrote:last radiologist said they wouldn’t be able to do a fine needle biopsy as there is too much thyroid tissue to go through
...
Thought most welcome
 

hi Lozza

as I said to Sue a couple of days ago... Dr Norman says it's not a good idea to do needle biopsies on parathyroid glands, because it will damage the gland and potentially spread cell debris around which will then start growing independently.  So you don't want that anyway even if you could. 

so that is my thought :-)

good luck with it!

Dora

Thanks to all for support, 

I am interested to get print out of my other bloods at addenbrookes, especially now PTH is again high. ( sorry i don't have levels, till paperwork comes back)

I will see my GP on Thursday 5th june, i have been prescribed Prochlorperazine Maleate for the sickness that i have, does anyone else have to takes these ?

I have been putting of taking these,

I am going to explain everything to GP and see what see thinks, I will also write to Consultant and i saw registrar and how know what information has actually been passed on.

i am going to complain about not informing me that they had forgotten to do calcium bloods and that they had PTH as a higher level, which again they didn't inform me off and also to say, i was told that it doesn't a matter what a scan says, it is all based on high calcium level.

The scan was done by a consultant and he went out of his way to give them these results.

I get the impression, for some reason they just don't want to tell me what is going on. A previous letter to my GP states, " we expect her PTH and calcium levels to slowly return to normal, once her Vit D is at a normal level " from what they told me on friday, my VIT D is now at a good level and the PTH has risen .... clearly not what they thought was going to happen.  

I am to wait till they send me a letter, bet i have to contact them and follow this up.

Well this PTH certainly takes up too much energy.

thanks to all
have a good bank holiday- well what is left of it,

best wishes

Lozza 

Hi Lozza
I've only just caught up with this email string - and your situation is even worse than I had thought!

We have very similar blood tests results though: my serum calcium (not corrected) is now around 2.49 with a PTH of 12.something.

I will show these to the registrar in the Thyroid Clinic on Thursday and see what her reaction is - and also see what my latest blood results from Addenbrookes are, and whether or not they are in the right relationship (i.e. a relatively high-normal calcium with a high PTH - not in the right relationship at all, as far as I can see).

I intend to wait for the ultrasound that Dr Levy has promised me and see what result that brings. If an adenoma shows up, I plan to get my GP to refer me straight to endo-surgeon Fausto Palazzo at the Hammersmith Hospital (on the NHS). I hope to have in one hand a letter from Dr Levy referring me there, and in the other an ultrasound report showing an adenoma lit up like a Christmas tree!

Fausto Palazzo is an endo-surgeon at the Hammersmith Hospital (NHS) but at a different London hospital if you are going to go privately (someone will give the details, I'm sure). I think I can safely say that he is one of our our favoured men-of-the-moment for this complicated type of surgery if you can reach the London area, and the endo unit at the Hammersmith has a very good reputation.

Your case is different to mine in that you already have ultrasound evidence of an adenoma. Perhaps you don't need to be bothering with any more endo's ? You could end up seeing more and more of them who don't "get" parathyroid disease and are waiting for the research on us guinea-pigs to be published in 20 years' time!! I'll be 82 by then .....

In your position - and I hope Jasmine and others with experience of the NHS pathways to treatment will chip in here - I would get together the copies of both of your positive ultrasound reports and email them straight to Fausto Palazzo's secretary asking her to show them to him for his comments. If your GP is on your side, then it might be better if she were to send them to him, as she will be the one who will have to refer you to FP if you choose to have him do your surgery, if it comes to that.

I expect you will want to do some more research on this, and (disclaimer alert ...) I am not medically qualified so this is just my view on our similar situations, but you asked if anyone knew any endo's, and in your case I feel you might be able to dispense with these bug...s now!!

Another solution might be to call FP's secretary and ask for the name of an endo with whom FP works, and then ask your doctor to refer you to that endo. If things don't pan out with Dr Levy, I may take my own advice and do that myself.

Keep us posted, Lozza - Love from Tigerlily xx

Hi Lozza

I think Tigerlily is right about maybe not bothering with seeing another Endo, I was going to suggest the same.

If you have all the test results and an ultrasound then your GP can refer you straight to the surgeon.

My Endo recommended my surgeon but my GP had to refer me to him.

If you fancy trips to Bristol Justin Morgan comes highly recommended and he is not in favour of the wait and see approach.

Nelly

Hi,
Thanks for info, yes I was wondering the same thing as surely with the high PTH and 2 scan reports, plus I am now having to take prochlorerazine maleate for sickness, clearly this is affecting me. My last Ultrasound scan was done by a consultant radiologist , and was very keen that this got sent straight away to my GP

I will chat with GP and also get all my test results from Addenbrookes and certainly contacting a surgeon seems like the next approach, don't mind where I go, just want to get it over with.

I am not waiting 20 years, after all it is the surgeon who will make the decision whether they can operate not an endo. This is affecting my life and I am 41, I want to get on with things, rather than being part of the furniture at Addenbrookes.

I will be very interest to hear what Thyroid Registrar says to you Tigerlily on Thursday, please update, thanks Nelly, you are right, I realise I need a bit of time to help myself and also to take all of this in and I think I would feel more at ease having a chat with a surgeon, who understands this condition. after all we know ther is a delay in patients being sent for treatment, in a way endo have no right to decide this for us, it should also been our decision.

I should never of left a consultation feeling so upset these people are suppose to be helping us.

thanks once again

best wishes

Lozza 

Cheers, Lozza - sounds like a good plan.

Love Tigerlily xx

Dear all,
I had a reply from Mr.Wishart secretary

Good to know we is still do Parathyroid surgery and Addenbrookes should really update their website. Hope this is useful info









Prof Wishart is no longer at Addenbrooke’s. He left in 2011. I wonder why they are not telling you this? very strange.

He does parathyroid surgery privately, usually at the Spire in Cambridge."





Might also explore this as an avenue, 
best wishes


Lozza