Calcium:creatinine ratio

Not sure if I've done this right, and maths is definitely not my strong point even without a foggy HPT brain but, using the calculation in the reference section, I've worked out that my calcium:creatinine ratio is 12.71, which is way higher than the examples given on the page, but I checked that I was using the correct levels and measurements etc; does this sound right to you or have I made some fundamental errors in the calculation? If it is correct, then that definitely rules out FHH, right?   

Jasmine x

Hi Jasmine,

If you give us your levels - we can do a "group session" and work this out and see what different people get.

regards
Lozza

Thanks Lozza.  My levels are:

urine calcium 5.6 mmols
Serum creatinine 88 umols
total serum calcium 2.92
Urine creatinine 13.27 mmols

Jasmine x

Hi Jasmine,

I calculated this as 0.0127 using following link


www.imperialendo.co.uk/HammersmithCaCr-Calculator.xls

give this another go and see if you agree or hopefully someone with better maths will come along !

best wishes

Lozza

I did actually send a reply to your post Lozza saying my maths is rubbish and that I was on the right path but looked like I was a few decimal places out, but my post disappeared into the ether!

Anyway, I did it again and got the same as you - I'd forgotten to divide the serum creatinine by 1000!

So ..... For FHH you'd expect it to be below 0.01 is that right?  Not sure how tight the parameters are so I don't really know if 0.0127 is borderline or definitely rules it out?

Jasmine x

Hi Jasmine,
I don't know whether level above 0.01 are def not FHH , I certainly haven't found any articles which say that there can be " a grey area" but than again with this illness who knows.

Hopefully you will get this confirm, I think my own calculations for this were also just above 0.01 - I will check and get back to you. I have been told I don't have FHH. ( But they certainly went on about this to start with, till ruled out, now I have the vit d is to blame ...)

As far as I understand for FHH needs to be below 0.01- hopefully medical world will clarify this point. I will certainly ask my GP when I see her next.

I think as patient we could really do with some patient information ....

best wishes

Lozza 

Thanks for your help with this Lozza.  I want to be as well informed as possible before Mr Palazzo rings me next week to discuss all my latest results to see where we go from here.  The letter he wrote to my GP suggested he felt it might be FHH having had two unsuccessful PT surgeries now and that put the wind up me a bit as I'm SO symptomatic still, and my Ca is high, PTH inappropriately high, and I'm afraid I'll be fobbed off with FHH and left to get on with things untreated and possibly misdiagnosed, although I'm sure Mr P will leave no stone unturned and I have every confidence in him, just my anxiety and paranoia getting the better of me....   

Jasmine x

Hi Jasmine,

I think you are in very good hands with Mr. P,  I am sure he will go through everything, he will probably want more bloods, They seem to want to do a lot of blood tests, when they are not sure. I have had 5 blood tests this year alone !

Try not to worry, easier said than done I know and keep us posted on how things go.

I think we need a cute picture corner . I remember some one had a good picture of pandas.

best wishes

Lozza 

Hi Jasmine good luck for next week, like someone else said you don't just suddenly develop FHH it genetic and you would have had high calcium all your life. Can you find any pre PTH calcium blood results with your GP that would show normal calcium. That is the path I will follow if they say they think I have it, also genetic testing can be done to rule it out (I'm sure Simon said that's what he had done)
I'm sure none of us has this but isn't it strange how everyone seems to be coming across this now. Is it a new directive for Endos and PTH Surgeons ?
Amanda xxxx

This is 1 thing I have not considered YET.   If I don't eventually fully recover from surgery, I will be checking this out too.     Sometimes I get so tired of trying to solve my stupid body's problems!   I'd just like it to work the way it's supposed to!     How about you all?    Sometimes I wish I could take a vacation and be able to just free my brain totally of health crap!!    My brain needs a break!

Audrey

I totally agree Audrey, I've said it before that sometimes I feel like I just want to say "stop the world I want to get off".  When you've been battling for years to get diagnosed having to do all your own research just so you can fight your corner, then have to continue on after seemingly unsuccessful surgery, it sometimes all gets too much and you have to hibernate for a while to get your emotional and physical strength back to carry on with the fight.  It's wearisome Audrey..... but we'll keep on keeping on until we get there!

Jasmine x

I completely understand the medical people should be saying us what is going on , we are after all just the patient.

When my endo finally tells me what is wrong I will say " I know what has taken you so long "

I look after lots of animals this is for life, I am not keen to take on an "endo for life"

ok, going round the bend, hope my sense of humour helps,

best wishes

Lozza 

Great, lozza - "an endo is just for Christmas (or whenever,) not for life!!

Tigerlily xx

Well it feels like I have also taken on " an endo" in my life - wonder what they eat!

best wishes

Lozza  

ps- if we are both at addenbrookes on same day, they will never be able to deal with our sense of humour in their waiting room...

there will be far to much laughter.

Laughter.....? Humour .....? We'll have none of that on here thank you very much .....  

  

Jasmine x

And this is especially why I LOVE this forum!!! I joined over a year ago for tips on getting diagnosed. Everyone on here was great with helping me accomplish that. When I needed support, everybody was ready to jump in and hold me up. When I needed a laugh to keep me going, everybody was here to put a smile back on my face. Love you all!

As far as fighting the doctors, I'm sure by now the entire US knows me as BULLDOG!! Good thing I'm not in the UK. I don't think 1 country could handle us all! Grrrrrrrrr.................

Thank you all for the laughs!

Audrey

Great lozza!

How about a rousing chorus, everyone, of:

"Keep right on to the end-o the road, keep right on to the end - o !!"

I'm smiling here, but then I do tend to laugh at my own jokes - must be another HPT symptom?!!

Love Tigerlily xx

No, i am also laughing    

I think we should also set up a national " take an endo to work day " - so they can see what it is like with this condition.

Personally i think" my endo" is very shy, as i haven't meet her and only see "mini endo"- sorry this good go on for a while, please feel free to add any " endo ideas" i guess they all have their own personalities....

best wishes

Lozza 

Hi All 
I think mine should be called Endon'thaveab****yclueaboutparathyroiddisease.
Amanda xxxx

Hi Jasmine If my labs still look iffy  when I see my endo. I am going to ask to be tested for Fhh he mentioned it once then changed his mind. But there is not to much online about Fhh, I did read about high cal and normal or slightly  elevated pth  and the <0.001 as being possible for Fhh and Dr N said urine cal under 100mg another med website said under 200mg so  thats why the cal/creatinine ratio comes into play maybe a better indicator. Hang in there Jasmine hope we all get some answers soon.