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Well that went well (not)

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Well that went well (not)

Post by Lucycatnaps on Wed Sep 17, 2014 4:41 pm

Well a short synopsis leading up to yesterday, first endo appt back in May for investigation of raised calcium and PTH.  Had done a 24 hr urine in Feb which showed low calcium but my nice endo felt it was ok.  I paid privately to see Mr Palazzo at the end of May re my neck lump and he picked up on low urine calcium and said go get D tested and if low take D, redo 24 urine and then get your endo to refer.  So I saw my nice endo in July, sure enough my D was low so he wanted me to take D for 3 months ands then repeat the 24 hr urine and he would see me in November.  This was to rule out the FHH condition.  However I was sent an appt for yesterday which only gave me 6 weeks to replete my D and redo the 24hr urine.  

So yesterday I arrive for my appt, am shown in by nurse and told to sit down, ( my dh was with me)
The doctor behind the desk was not my endo, just sat there going through my notes and looking at screen and then finally said "How are you?"  So I told him I felt rubbish, had been getting a lot of reflux and acid the last month.  I am looking at my dh saying with eyes who is this man?  Then he asked me about meds I am on, tell him Thyroxine, any OTC meds like Rennies??  I asked what?, never had gastric probs like this in my life until this all started and have just started some gaviscon from GP just at night to stop silent reflux.   Then he said my urine calcium was within normal limits and only patientswho have high urine calciums above normal have PHPT. So I countered a third do but 2/3rds do not have high urine calciums.  He did not like that.  Then he read my notes and said you have FHH.  I countered so what is my CCCR ratio??   He could not answer that, told me my urine calcium  mid range for 24 hrs.  Again I asked so what is my urine ratio?? Is it less than 0.01?  Again he ignored me and would not give me my blood results or urine calcium results.  I then stated that I was not yet Vitamin D replete and that my urine calcium had in fact increased from my last test and maybe I needed to be on it for longer to make a difference.  My D is now 67 which he felt was fine, however ideally it should be over 75.  So he basically said that a serum calcium of 2.74 adjusted was fine to walk around with as my PTH was just back into normal at 54 and he thinks I should be discharged and go back to my GP and request referral to a haematologist for the raised calciums and a gastroenterology to sort out my GERD.  He told me there is nothing they can do for FHH, no mention of genetic testing and surgery will not help.  Then told me had 20 years of experience I do not have PHPT.  I was getting really upset by this point and  he basically said I have patients waiting, we will see you in 6 months, no mention of getting my bloods done or continuing on the D, so we left.
I asked his name and he said he was another consultant and that my endo was away.  I have asked him to refer me back to Mr Palazzo and he has told me he will do that but feels it is futile as I have already seen him in May.  I was finding it hard to stay calm but explained again that Mr P felt that my local endo could manage to arrange the 24 hr urine.  We got outside and the tears flowed and we came home.  
In the afternoon I went to my GP's and the other receptionist printed all my bloods out plus my 24 hr urine. I got home and used the Hammersmith CCCR formula and it came out as 0.012.  That to my mind is greater than 0.01 and therefore rules out FHH.  I read a paper recently that said many proven PHPT patients had urine calciums between 0.01 and 0.02.  I also suspect that if I had been given an appt for November as requested my D would be higher and the calcium likewise increased in my output.
I think I will ring my normal endo secretary next week and express my surprise that my endo did not follow up on his treatment plan by reviewing me as he stated he would.  I was very surprised at this other endo's reaction who basically said go back to our GP, your problems are not my area.
So if I do not hear anything from Hammersmith then I will commence a formal complaint at his attitude, incompetence and lack of knowledge.  I am glad my husband came with me to listen to his attitude which was rude and dismissive. The first consultant was totally different and caring and seemed to think I had PHPT.
Hope you are all having better today!
Hugs Sue x
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Re: Well that went well (not)

Post by Jasmine2 on Wed Sep 17, 2014 5:57 pm

Oh Sue, I could cry for you, in fact I'm welling up as I write. What a pompous, uneducated, arrogant ar*se of a man. It sounds to me, with his evasive attitude that he was probably a locum consultant and way out of his depth with regard to parathyroid disease. As for twenty years experience in pHPT, that may be the case but he's clearly been WRONG about it for twenty years! For a start he had no right to withhold information pertaining to your test results from you; high urine calcium is the only output indicator for pHPT? Is he having a laugh? My calcium:creatinine ratio was TWICE below 0.01, I tested negative for FHH and as Mr P put it, pHPT is indicated in spite of a low urine calcium. And how the heck can he arbitrarily diagnose you with FHH when you haven't been tested for it? Sue, I would take this up with PALS without delay and ask them to make an intervention to ensure that you get a referral to Hammersmith without further delay and make it quite clear that you won't hesitate to make a formal complaint as you have all the evidence you need to prove that this idiot is talking nonsense (and we can all help you to make the case). In my opinion this idiot hasn't just been dismissive of you, he has been negligent!

Chin up Sue, I know you're feeling raw at the moment but as soon as you feel up to it come out of your corner fighting! Don't let that fool and his nonsense prevail!

Love and hugs

Jasmine x
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Re: Well that went well (not)

Post by Tigerlily on Wed Sep 17, 2014 6:13 pm

So sorry to hear of this, Sue. There are just too many of these people about - and my endo is just the same - she has just written to my GP to say my blood Ca and PTH have "stabilised" at 2.64 and 5.83 and ridiculing me for wanting a parathyroidectomy with these "normal values" - when the bloomin' adenoma (17 x 6 x 4 mm) was seen on the US at her own hospital!!

I support everything that Jasmine says. I shall be doing the same about my endo when I have the strength to do it.

He is another endo who doesn't "get" the fact that a high-in-the-range calcium should not show up with a similarly high-in-the-range PTH from the same blood draw. This is so simple and it is stated in so many papers etc that such a PTH level is "inappropriate" and indicates primary PTH.

Sending you strength and hugs - Love from Tigerlily xxxx

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Re: Well that went well (not)

Post by Brigitte0 on Wed Sep 17, 2014 7:12 pm

This is just so heartbreaking Sue and I'm so sorry you've come up against such an ignoramus. I also agree with everything Jasmine says and when you've picked yourself up and dusted yourself off a bit, I really hope you'll come up fighting and complain about your treatment. It really is negligent and appalling.

My Endo is fortunately very forward thinking and modern in his approach but the surgeon is closed off and doesn't recognise symptoms or even test results, because after all, if you don't have a calcium level over 3 you can't have any symptoms. I can't believe that you can waltz from an up-to-date opinion to a Neolithic one within the same hospital, especially since the buck stops with the surgeon who has the knife and doesn't want to check all glands! My other disease means that I am missing tumour suppressors in my genes for crying out loud  Mad

I hope that after some positive thinking, you can raise your spirits and go after getting this complete prat of a consultant a hard slap on the wrist and a large dent to his egotistical pride.

Many hugs and much love

Brigitte xxxx
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Re: Well that went well (not)

Post by Kathi209 on Wed Sep 17, 2014 11:56 pm

Oh Sue dump this guy he is one big idiot. Lots and lots of people with phpt have normal urine calcium. Grrrrrrrr this makes me so mad. Chin up Sue and find a endo that is not that stupid. Hugs to you.

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Re: Well that went well (not)

Post by Tigerlily on Thu Sep 18, 2014 12:19 am

Sue - me again - despite a goodly dose of Sainsbury's best herbal sleeping tablets, I'm still awake here, so I wanted to send you a thought before it escapes me:

Are you not close enough to Leicester to get yourself referred to Jasmine's star endo, Dr Miles Levy, for the endo input? I have consulted him myself and he really seems to "get" everything to do with hyperparathyroidism. And also, Fausto Palazzo and Miles Levy seem to know each other, because Miles Levy mentioned FP's name to me.

Just a hazy tired thought - back to bed now - Night Night - Love from Tigerlily xxxx

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Re: Well that went well (not)

Post by Lucycatnaps on Thu Sep 18, 2014 12:27 am

Thank you all for your hugs, I just don't know what to believe any more, what is left of my mind goes round in circles wondering if it could be something else, each ache and cramp makes me wonder is it due to the calcium levels or what??  I mentioned my feet ache a lot and wake me in the night, especially my big toe joints so he said gout and again go see your GP.  I have started feeling very nauseous in the mornings and I wonder if it related to a higher calcium, Monday evening I was actually sick.  It was 2.79 corrected to 2.74, the highest I have had and again I think taking the D is raising it.  
I had a lovely day today, we have just got home from London where my daughter lives, she wanted some DIY doing and took us out for lunch at the Criterion in Picadilly so I feel very spoilt.  I have gained several pounds and another year but I don't count any more!   I agree about making a formal complaint but I will wait and see if I am referred to Mr P.  I just do not understand how they think this does not impact on everyday life.  Mr Lucy is very well versed in excellent compositions.  
Tigerlily, I just don't understand their rationale for depriving patients of  at least the chance of a cure.  I think we need to have more home grown doctors  instead of relying on overseas support.  
Brigitte, I am so glad you finally have a date for your surgery.  I had the same response from the ENT consultant here, that if I had a tumour it would be too small to locate and my raised calciums were only a little high above normal so not a problem. I can imagine that with your other health worries it can muddy the waters and this is what concerns me as well.   I wonder how many people are being strung along with this " it's not a problem".   
I thank you all for helping me feel a lot better, all chins are up again and just need to plod on.
Hugs back to you all, Sue
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Re: Well that went well (not)

Post by Tigerlily on Thu Sep 18, 2014 12:43 am

So glad you've had a lovely day to take your mind off the consult, Sue.

I've had a poor result with several GP's, endo's, registrars, and even one endocrine surgeon who didn't "get it" that calcium levels he described as "all over the place" were due to PTH being produced in an uncontrolled manner because of an adenoma and influencing my calcium in a similar erratic way. Also, many medics don't like the patient to take any sort of lead whatsoever (despite all the NICE and government calls to be an active participant in our own healthcare) as it dents their professional ego - I'm up against this with my current thyroid endo at the moment and you seem to have come across the same thing with your twerp.

As you say, all chins up (love that one!), and onward - so glad that FP has you under his wing already and hope you get back to see him soon so maybe he can do all the tests he needs.

Love from Tigerlily xxxx

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Re: Well that went well (not)

Post by Lucycatnaps on Thu Sep 18, 2014 12:58 am

Tigerlily, I had thought about that, going to see Miles Levy and I may follow that up if this man does not refer me to Mr P.  I did not have a problem at all with the endo consultant I have seen the last two times, he seemed very knowledgable and switched on and I fully expected to see him again yesterday.  This replacement might have been a cleaner for all I know, he looked scruffy and he never introduced himself and just had us sat there whilst he went through my notes before speaking.  
I knew FHH was on the cards, but there is no history in our family, I grilled my mother on all her side and nothing.  I also felt I am a bit old for it to show up now but for him to just say you have FHH with no proof and go away was a lot to stomach.  I am so glad I got the first endo to put copy results to my GP as it would have been really hard to get them from the hospital and I would have been really stressed.  I also do not understand why GP practises here cannot access the hospital path lab results on their patients.  I must away to my bed as well, just cannot stop burping tonight.
Nighters and hope you get back to sleep,
Sue
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Re: Well that went well (not)

Post by Tigerlily on Thu Sep 18, 2014 11:56 am

Thanks, Sue - eventually got some sleep.

That's odd what you say about that chap poswsibly being a cleaner - stranger things have happened, I'm sure!

A second opinion on the FHH front is something I would look for. I think I shall have to ask Miles Levy to take me on as well because I have no endo support in this area. It's handy that he knows Fausto Palazzo as well. We could get ourselves a nice production line going with those two!

Love from Tigerlily xxxx

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Re: Well that went well (not)

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