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Next 24 hr urine collection

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Next 24 hr urine collection

Post by Lucycatnaps on Tue Aug 19, 2014 2:00 pm

Hi again,
I saw my endo mid July and because my Vitamin D was low in June he wants me to take a low dose supplement of 1000iu for 3 months and then repeat the Vit D blood test  and do another 24 hour urine collection to rule out FHH that Mr Palazzo mentioned as he felt my urine calcium was very low.
He asked that I get my blood calcium checked after 4 weeks to make sure my calcium does not
go too high and if it is ok to continue on the D and then do tests ready for my next appointment which he said he would request for 4 months time.  He gave me the appt request form saying he has put 3 months as then I might get one for 4 months when he actually wants to see me as he knows his appts are few and far between, so I duly handed it in after my visit and after a month my letter arrived last week with an appointment for mid September, which is only 2 months after I have seen him and so far I have been on D for just a month.  I rang his secretary to get my 4 week calcium results and said that the appointment sent was for 2 months time, so she said he is away in October  and not doing clinics and then got confused when I said he said 4 months,and  to ring the appointment number.  So I ring the appointments number and explained I need an appt for 4 months, so she could not tell  me if I would get an appt in November and that his appts were like gold dust and if I cancelled it I would go to the end of the queue again.  So I have left it for mid Sept and hope he isn't going to be cross with me, I will have to get the 24 hr urine done beginning of Sept which means I will have only been supplementing for 6 weeks.  I really want this FHH ruled out so that he can forward me to Mr Palazzo, what would you do?
Thanks in advance!
Sue x
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Re: Next 24 hr urine collection

Post by Brigitte0 on Tue Aug 19, 2014 2:24 pm

Well that dilemma certainly swirls the brain fog, Sue! I think you've done the right thing though because otherwise you won't see him for a long while. They normally wait 3 months to see how the Vit D supplement goes, but I can't see why he'd be cross with you, especially since he's got time off. The way my poor brain sees it is that you're better off with the appointment you have rather than one in the way distant future. He can advise you further then. 

Love and lots of hugs 
Brigitte xxx
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Re: Next 24 hr urine collection

Post by Amanda Lynne on Tue Aug 19, 2014 2:36 pm

Hi Sue it's not your fault the Hospital can't fit you in, if he queries why you are seeing him so soon say the only other appointment they could offer you for months was while he was away so you thought it better to keep this one as you were told his appointments were like gold dust. Put the ball back in their court, you have no control over their appointment system.
The FHH problem we have is such a pain, do you know what your urine calcium was ? And what their range is. Mine started at 1 and has now gone up to 2.9, I'm wondering if the first one was even done properly !!!
If he can see your calcium is rising it might be a good indication anyway that it's not FHH is he going to do genetic test ?
I don't think he will be cross, it's out of your hands.
Lots of love Amanda xxxx
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Re: Next 24 hr urine collection

Post by Lucycatnaps on Tue Aug 19, 2014 2:52 pm

Thanks ladies,
I do not think the appointment clerk understood what I was explaining and thought I was cancelling it because it wasn't convenient and so could wait their pleasure on reissuing an appointment.  I just don't want it to be low again due to not being Vitamin D replete as the dose I am on is very low.
My first 24 hr result was Feb 13th 2014
Volume 2,884 mls.                    Was incredibly thirsty at the time
Urine creatinine 2.76 mmol/L
Urine calcium level 0.91 mmol/L

Endo here says that is fine and not FHH
Mr Palazzo did his CCCR thing and said it may be and needs ruling out
Hugs Sue x
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Re: Next 24 hr urine collection

Post by Amanda Lynne on Tue Aug 19, 2014 3:15 pm

Just  looked up my last test result.
Volume 2.20 litres
Urine creatinine 3.9 mmol/L
Urine calcium 2.9 mmol/L urine calcium concentration 1.3 mmol/L
Previous results.
Volume 2.32 L
Urine creatinine 3.1
Urine calcium 2.8 urine calcium concentration 1.2
Febs results
Volume 2.24 L
Urine creatinine didn't test !!!
Urine calcium 2.2 urine calcium concentration 1.0 
Mine do seem to be rising slightly and I think that's because I have reduced PPI's but they are still very similar to yours, it would be highly, highly, highly unlikely that within a small amount of people there are on this forum that even one of us would have FHH let alone at least 3 and if you look at the charts on parathyroid.com it shows that loads of his patients  have had low urine calcium levels. In a way it's a relief that so many of us are having this problem (if you know what I mean) if it was just one of us and nobody else had even had it mentioned then it would be more scary. We will get through this and we will get surgery and cured.
Love Amanda xxxx
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Re: Next 24 hr urine collection

Post by Amanda Lynne on Tue Aug 19, 2014 3:29 pm

Hi Sue 
I've tried doing the CCCR calculation and mine seem to come out as 0.0086 0.0091 & 0.01 I know Jasmine has posted hers on here but I can't find it did they tell you what yours was.
Amanda xxxx
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Re: Next 24 hr urine collection

Post by Lucycatnaps on Tue Aug 19, 2014 7:51 pm

Hi Amanda,
FHH does seem to be flavour of the month with Mr P, I cannot remember exactly what he said my CCCR was when I went to see him but he did say it was low and if my endo had called him it would have saved me a journey until it was ruled out.  I suspect when I did mine that my D was low, I had just started PPI's and also some estrogen pessaries every day all of which lower calcium.  I stopped the PPI's as I find they make my tummy burn as if they are too strong and dry up the acid too much, I am now on just one estrogen a week and hopefully with all the sun my Vit D has risen a little.  I will go and order the container next week as she said it can take a week to get to the surgery.  I need to have the test done and results back by the 16th Sept and hope  it has made a difference to my urine calcium.
I agree with you that it seems so improbable that we all could have FHH but surely if it is that rare then it is better to offer surgery and maybe there are the odd one or two who get operated on for whom it is not successful, rather than denying many surgery just in case it might be FHH.  Even the genetic testing is not foolproof.
I really hope both you and Jasmine get good news soon.
Hugs Sue x
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