Back from seeing Dr Levy in Leicester

Hi Everyone (and thanks to Jasmine for ghosting my last message) !

We got back from our long road trip at about 12 noon today and it's taken me all day till now to catch up on the forum. I don't know, you can't turn your back for a minute as there's so much going on!

Firstly wanted to thank Lozza for posting about her own journey around Addenbrookes, as I shall be there again this week seeing Dr Wood's registrar in the Thyroid Clinic. What a shabby way they have treated you, Lozza. I am so upset on your behalf. They will only take their own blood tests into consideration and their reference ranges are quite different to those elsewhere. I have had two high PTH levels (11 and 12+) from my local hospital, but Addenbrookes' lab measured PTH as around half of that 24 hrs later (and I always try to give blood fasting and early in the morning for consistency). And eyes glaze over there when I mention to anyone about Ca and PTH not being in an appropriate relationship - they don't seem to "get" that at all.

Which brings me to one worrying point about my (otherwise good) consult with Dr Levy at Spire Leicester Hospital (I paid for the first consult, but will be reverting to his NHS Clinic at Leicester Royal Infirmary) for any tests/treatment). He quite clearly stated that it's only the calcium level that counts, not the PTH. This worried me somewhat as both Jasmine and I were aware that a continued high PTH can be the cause of later cardiovascular problems.

I have only had one high serum calcium in the past - 2.73 - but this one high level seemed to be enough to convince Dr Levy that an ultrasound was indicated. Strange really, because it was this one high level that convinced 3 other experts that it was just a blip to do with taking 4000 iu of Vitamin D daily (I originally wouldn't take the 50,000 iu in case the Ca rose further) to get my previously low Vit D level of 16 back up to "acceptable" again.

I did have an hour with Dr Levy and I took my husband in with me as an extra "brain" to try and remember between us what was said. I spent most of the hour explaining my symptoms of pHPT, and possible pituitary disease as evidenced by various cranial nerve problems, as I thought that a pituitary adenoma might be pressing on various cranial nerves causing strange face/head/neck/jaw/teeth pain problems, but it looks as though I have the same headache as others have reported previously, so maybe that is the answer to those symptoms.

Additionally, however, to the headache business, the lymph nodes under my chin seem to be enlarged and the same side of my face is quite puffy, and my lip drooping down a bit that side. I don't feel ill, or as if I'm fighting any sort of infection. It seems just a physical thing. I expect I've given myself a stroke or something waiting for the time to pass and the date of this appointment to come - I wouldn't be surprised at anything now!

All in all, Dr Levy was quite sympathetic to the fact that there seemed to be so many symptoms and so much going on. I had to just splatter it all down for him (despite having written it all down, you still have to "present" the information somehow face-to-face, even though I had sent him all the written stuff beforehand) and ask him to make some sense of it. Anyway, he finally said that he thought an ultrasound would be in order and that he had a guy at his NHS clinic who was very skilled at finding HPT adenoma with US where no-one else could. He related a story about him (name something like Stromboli) putting some poor woman in a distinctly upside-down position on the couch one time, but he eventually found her adenoma, so at least there's hope.

What he didn't give, however, was hope for a resolution of symptoms, even with an adenoma found and taken out. But I suppose they have to say that to cover themselves.

It would appear that Dr Levy trained at the Hammersmith, and then moved north especially to be with another particular colleague and to establish the specialist endo/PTH NHS Clinic at the Leicester Royal Infirmary. He also knows (of) Fausto Palazzo and also seems to know my endo at Addenbrookes (nightmare!!   ).

So, that's about it , Folks! Mission accomplished. Money well spent. Ultrasound next, and then we'll see where it goes from there. It wasn't too terrible a journey from Suffolk to Leicester - just over 2 hrs, and well worth it in my view to get to see someone who knows what they are talking about.

Hope you are all getting a bit of a rest and some sun today - all thought and comments welcome, especially if anyone has any ideas about/an equally puffy face along with the aching and "tight" head/neck/jaw/teeth/etc.

Lots of Love from Tigerlily xx

Hi Tigerlily,

Thanks for the update, good to hear, strange how i was also told doesn't matter how high PTH level is , it is all down to calcium level ? are they changing the goal posts ?

I think it is good to have the ultrasound of neck done, it will help to say what is going on.

just to let you know, Addenbrookes last friday, every member of staff was really moody - no idea what was going on.
Mum came with me and said we should start doing the " can can" around the waiting room to cheer the place up !!

Did Mr Levy - have any view on Addenbrookes ? i would be interested to Know ????


i think you did really well and good to see a consultant for an hour, gives you time to go through everything.


best wishes


Lozza 

Hi Lozza

Thanks for the tip about the mood at Addenbrookes! I'll be there at the Thyroid Clinic at 11.30h on Thursday, so will let you know if they've cheered up any!

No, Dr Levy didn't offer any comment about Addenbrookes generally but seemed to want to establish that it was Dr Diana Wood that I see there. I got the feeling that either he knew her, or remembered her name from the letters from her to my GP (saying there was no way I could have HPT).

I got a similar reaction about ordering ultrasounds from my local hospital. I saw the endo there who monitors my husband's type 2 diabetes (I know, wrong type of endo, but I thought I could at least talk to him about it) and he said his colleagues would give him hell if he put me forward for a neck ultrasound to investigate HPT because I had no symptoms of it. Seem to be in a world of their own, really.

I'll let you know how it goes on Thursday. I should be getting the results of recent Vit D, Ca and PTH tests, plus the result of the 24-hr urine calcium.

Love Tigerlily xx

Hi Tigerlily,
Think i meant doing the conga dance, not can, can , another PTH moment, where i get totally confused!!

I guess they probably do know each other as hospital are fairly close. I have just come to the conclusion this is all going to take time and they do like to rule everything else out first, till they approach PTH.

Good luck with all the tests, I think as patients we should be listen to, we shouldn't have to fight to have scans/ tests etc. It is our body.

The more we challenge this, over time they might wise up to what patients want. I don't think it occurs to them.

all the best and thanks for support,

Lozza

Cheers, Lozz! Conga or can-can, I don't mind - anything to jolt them up a bit!

Yes, that was a very interesting comment you posted about them not knowing enough about PTH yet, so that everyone presenting with symptoms of it over the next 20 years will find it hard to get diagnosed! (Or words to that effect - I know they didn't actually say that.)

When I write my letter of complaint about the treatment I have received at Addenbrookes to their Chief Executive I might have to ask you if I can quote that!! Just kidding - but it makes you think, doesn't it? They regard themselves as 'a centre of excellence' but they are just not getting things done.

I think you are right that they wish to rule out everything else before they even approach the idea of a parathyroid problem, and that we should continue to challenge them to prove that we have not got it, rather than exhausting ourselves doi8ng it the other way around.

Thanks again for the information and I'll let you know how I get on there this week!

Love Tigerlily xx

Hi Tigerlily and Lozza,
I too did not appreciate how difficult or prolonged it would be to have a diagnosis confirmed.  I am heartened to hear that your appointment with Dr L went pretty well and that he is prepared to find out the cause of all you symptoms.  I think that Lozza's treatment has been pretty shabby so far.
I've read a lot of guidelines, reviews etc of treatment plans for HPT and  best practise etc as I'm sure you all have too.  It seems what they are saying is that,
HPT is being picked up much earlier in blood tests than it used to be because of the ability to check PTH and calcium blood levels.
Therefore it is "asymptomatic" at presentation.  Definition of asymptomatic seems to be defined as no kidney stones or osteoporosis.  All our other symptoms can be caused by other illnesses.  Age of 50 seems to be mentioned a lot if asymptomatic and studies show that some people do not progress to develop kidney stones or osteo and can be monitored long term.  The debate of whether this is cost effective is still out on this.  Progress in minimally invasive surgery is progressing and could be the better option as gosh what???? The patient could be cured!  It does seem to depend on surgical skill as to the outcome percentages, like anything, the more you do it, the better you get at it.  I agree with Tigerlily that getting them to prove we have not got it, may be the way to go, however this all appears to take a long time especially when endo appointments are few and far between.  
As regards FHH I am sure it does exist and needs to be ruled out as quite rightly surgery will not cure the symptoms.  I did read that if it is FHH that your blood calcium has been elevated all your life.  I have an oral follow up tomorrow and I know I had a lot of bloods done back in 2006 when the auto immune stuff for RP reared it's head ( me attacking my own cartilage). I will try and get him to look if my calcium was raised back then as GP cannot access hospital bloods.  I have read that low Vitamin D can cause low urine calcium output as can a low sodium intake.  My Vit D has not been tested yet but my 24 was done the beginning of Feb and may explain my borderline low on urine calcium.  It seems when I go in July the next step will be a course of high D intake then redo the 24.  I am loathe to do the D but one paper says it does not impact on raising blood calcium significantly, I would much rather do it naturally with sunlight.  I just do not see why it has to take so long and we all end up suffering long term.
Hugs to you both, 
Sue

Hi,

Just to say I have sent an email to Mr Wishart as his name is on Addenbrookes  website regarding being the surgeon and as I am aware he isn't. I will be seeing my GP about what to do next. I have kept a list of everything, I don't expect to get a letter from them about what is happening next and will no doubt have to chase this up.

I hope my GP was suggestions, I will be also putting in a formal complaint as they are not helping parathyroid patients at all.

I think comments like " GP are over zelous, don't know anything and we are the experts" needs clarification.
also " we do too many scans, blood tests" and then to have information screen on donation money for scanners needs clarification....

As far as I could tell, she also switched on her dictaphone and recorded the whole thing, without asking for my permission...

I can't wait for copies of all my clinic notes, test results etc.

regards

Lozza

best wishes

Lozza

Hi Tigerlily, Lozza & Sue.
I'm glad it went well with Mr Levy Tigerlilly lets hope Mr Stromboli (I seem to remember there was a Stromboli in Pinnocchio and there's a rolled pizza called Stromboli) maybe its named after his techniques at getting a positive US scan, watch out !!!
Lets hope ML gets you sorted and confirmed and doesn't mess around like everyone else seems to concerning this disease. I'm still no nearer to discovering what is causing this permanent neck/headache but as my lower back is agony after bending to pick up something from the floor, it popped and a severe pain ensued !!!! I presume its all to do with spine/neck problems.
If low vit d contributes to low urine calcium then I need to boost mine before my next 24 urine I have just got forms in post to collect the bottle. along with blood test forms and a letter from endo.
This says up until the low/borderline urine/creatine ratio she was going to refer me to Hammersmith. She has said however if this 24 still shows up low she would then put me forward for genetic testing which is fair enough.
She is requesting all scans/histological reports from all Hospitals concerned. this was meant to be done at the beginning of December, I have a letter stating this from Registrar.
She gives the normal guff about only high calcium causing symptoms blah blah, low vit d causes symptoms etc and low ferritin as well causes tiredness (ferritin is 94 which is good for me so that's not relevant)
I will contact her once I've done 24hr and tell her about ferritin level and remind her Registrar was going to get everything requested early Dec 2013 so we would have been so much further down the line by now !!!
Then she has said she will review everything and will be in a better position to make a further PLAN !!!!
Lozza you definitely should make a complaint, we are made to feel as though we are a drain on resources, when all we want is to get better and not to have to keep having these appointments/scans etc.
Amanda xxxx

...Hi Sue - I've replied after the dots in between paragraphs below, so I don't forget what I wanted to say:

I too did not appreciate how difficult or prolonged it would be to have a diagnosis confirmed.  I am heartened to hear that your appointment with Dr L went pretty well and that he is prepared to find out the cause of all you symptoms.  I think that Lozza's treatment has been pretty shabby so far.

... Thanks for that, Sue - and I agree about Lozza's treatment.

I've read a lot of guidelines, reviews etc of treatment plans for HPT and  best practise etc as I'm sure you all have too.  It seems what they are saying is that,
HPT is being picked up much earlier in blood tests than it used to be because of the ability to check PTH and calcium blood levels.

... Yes, I've read this, too. The first symptoms often used to be the bone problems, then kidney stones.

Therefore it is "asymptomatic" at presentation.  Definition of asymptomatic seems to be defined as no kidney stones or osteoporosis.

... This is what I was told - basically, you don't have the right symptoms (even though I was never offered a DEXA scan), so you can't have pHPT!
Neat, circular thinking, that doesn't take any account of people presenting differently!!

  All our other symptoms can be caused by other illnesses.  Age of 50 seems to be mentioned a lot if asymptomatic and studies show that some people do not progress to develop kidney stones or osteo and can be monitored long term.

... Forgive my jaundiced view here, but I thought I'd read that 50-55 was a watershed age within pHPT diagnosis circles as the NICE guidelines seem to imply that people over 55 should not be offered surgery.

 The debate of whether this is cost effective is still out on this.  Progress in minimally invasive surgery is progressing and could be the better option as gosh what???? The patient could be cured!  It does seem to depend on surgical skill as to the outcome percentages, like anything, the more you do it, the better you get at it.

... That's a good thought, but I'll be hard pushed to spend the next 20 years ploughing a deep furrow in the road between here and the GP's surgery looking for alleviation of the whole crowd of pHPT symptoms I believe I do have. That is certainly not going to be cost-effective!

  I agree with Tigerlily that getting them to prove we have not got it, may be the way to go, however this all appears to take a long time especially when endo appointments are few and far between.

... Yes, and it takes up a lot of energy that we simply have not got. And I always think, if I (who can be my own advocate) am pushed to extremes with all of this, how about the poor old lady down the road who has no fight left in her to improve her situation? That saddens me.
 
As regards FHH I am sure it does exist and needs to be ruled out as quite rightly surgery will not cure the symptoms.  I did read that if it is FHH that your blood calcium has been elevated all your life.  I have an oral follow up tomorrow and I know I had a lot of bloods done back in 2006 when the auto immune stuff for RP reared it's head ( me attacking my own cartilage). I will try and get him to look if my calcium was raised back then as GP cannot access hospital bloods.  I have read that low Vitamin D can cause low urine calcium output as can a low sodium intake.  My Vit D has not been tested yet but my 24 was done the beginning of Feb and may explain my borderline low on urine calcium.  It seems when I go in July the next step will be a course of high D intake then redo the 24.  I am loathe to do the D but one paper says it does not impact on raising blood calcium significantly, I would much rather do it naturally with sunlight.  I just do not see why it has to take so long and we all end up suffering long term.

... I wouldn't do the 50,000 iu Vit D pantomime originally. I managed to convince my GP that my calcium would go up and so I preferred to take 4,000 iu Vit D3 per day and monitor it with regular blood tests. Sure enough, the calcium went up to 2.73. And the Vitamin D went up to 130 which I was OK with, but I was told not to take any more Vit D by the same endo who would have nothing to do with my having pHPT. No logic to this at all, is there?

... Thanks for all this information though, Sue. It's really helpful.

Love from Tigerlily xx

Hi Amanda - I've replied after the dots in between below:

I'm glad it went well with Mr Levy Tigerlilly lets hope Mr Stromboli (I seem to remember there was a Stromboli in Pinnocchio and there's a rolled pizza called Stromboli) maybe its named after his techniques at getting a positive US scan, watch out !!!

...Nice one, Amanda!! That gave me a good laugh!

Lets hope ML gets you sorted and confirmed and doesn't mess around like everyone else seems to concerning this disease.

... Thanks. I've just looked up the dates and it's nearly 8 months since my (different) GP reluctantly referred me to the local endo - the one I've just had a letter from saying that Ca at 2.49 and a PTH of 12.something is fine and dandy.

 I'm still no nearer to discovering what is causing this permanent neck/headache but as my lower back is agony after bending to pick up something from the floor, it popped and a severe pain ensued !!!! I presume its all to do with spine/neck problems.

... Yes, my back "went" last week for the first time in ages. A different pain to take out mind of things a bit, heh!
... This permanent neck/head/jaw/face/roof of mouth/eye socket/bridge of nose pain is getting me down now too. We seem to have the same thing. I'm living on Co-codamol to try and keep it at bay, but I've had it for 3 weeks now so I'm seeing a GP this afternoon. In addition,I woke up last week to find the right side of my face and mouth drooping down somewhat and the glands under my chin on the same side are quite large, making it difficult to sleep comfortably on that side. I don't actually feel ill from an infection - just the headache and droopy look. I'll let you know if the locum doctor has any ideas.

If low vit d contributes to low urine calcium then I need to boost mine before my next 24 urine I have just got forms in post to collect the bottle. along with blood test forms and a letter from endo.
This says up until the low/borderline urine/creatine ratio she was going to refer me to Hammersmith. She has said however if this 24 still shows up low she would then put me forward for genetic testing which is fair enough.

... I think I would ask her to save her money and refer me to Hammersmith straight away and let FP pay for the genetic testing. I think it takes ages, Amanda, as they have to collect all the test specimens from all around the country and do them all together. I seem to recall Simon mentioned that on the old forum.

She is requesting all scans/histological reports from all Hospitals concerned. this was meant to be done at the beginning of December, I have a letter stating this from Registrar.
She gives the normal guff about only high calcium causing symptoms blah blah, low vit d causes symptoms etc and low ferritin as well causes tiredness (ferritin is 94 which is good for me so that's not relevant)

... Oh yeah - the old one about "only calcium causes symptoms; you don't have high calcium and so - ta da! - you can't have any symptoms, and so you don't have pHPT". I do love that one!! Must be on a crib sheet somewhere for them all to learn it from!

I will contact her once I've done 24hr and tell her about ferritin level and remind her Registrar was going to get everything requested early Dec 2013 so we would have been so much further down the line by now !!!

... Absolutely ...!

Then she has said she will review everything and will be in a better position to make a further PLAN !!!!

... Make sure it's your own plan, Amanda.

Lozza you definitely should make a complaint, we are made to feel as though we are a drain on resources, when all we want is to get better and not to have to keep having these appointments/scans etc.
Amanda xxxx

Back soon from seeing GP about headache - Love Tigerlily xx

Hi Tigerlily,

Yes I will write a letter, just need to calm down!! need to put my evidence together, such as blood test not done , not informing me etc and not writing back to me, there is so much to put down.

Good luck to all with all the test,

best wishes

Lozza 

I know, Lozza - does nothing for the blood pressure, all this, does it?!!

Talk again soon.

Love Tigerlily xx