Reducing PPI's and increase in urine calcium output.

Hi All
As you know my 24 hr urine calcium output is low hence Endo being obsessed with FHH. I have stated in the past that I'm on a high dose of Nexium PPI 2 x 20 mg (god knows what damage this is doing but because of dodgy stomach valve it's the only way ATM to stop any damage being done by acid) I have also read that PPI's can reduce urine calcium output !!!!!!!
Since March I have been trying to take only one x 20mg a day, it's not easy as my reflux keeps flaring up.
Well I've just looked up my 24 hr urine calcium output and this is what I've found.!!!! Is this a coincidence ? Tell me what you think.
11/2/14 - 1 mmol 24hrs

12/5/14 - 2.8 mmol 24hrs

16/5/14 - 2.8 mmol 24hrs

29/5/14 - 2.9 mmol 24hrs

Amanda xxxx

Hmmmm...........very interesting, Amanda! You might be onto something here. I wonder maybe if this is why my urine calcium was always in the normal range when I was trying to get diagnosed. It probably had something to do with it. It is amazing how many different things affect our calcium levels, whether it be serum or urine.

Audrey

Well that's really good, Amanda - not a coincidence, I'm sure.
 
Maybe you'd like to try the potato juice remedy from my Polish friend - see today's additional posts and Audrey's and my discussion later on in the post Proton Pump Inhibitors.

Hope you're having a restful weekend - but I can see you are researching as well!

Love from Tigerlily xxxx

Hey, maybe when we all get together at the Ritz, we can toast our renewed health with a nice, hefty glass of potato juice!!   

Audrey

Hi Amanda
I did read where ppi's can reduce urine calcium. What is the UK reference range for the 24 hour urine test. I would hate to tell you to go off of it, for the next urine test because you will have to stay off of it for awhile to get it out of your system and would be miserable. I hope the doc take's note of the fact your on a ppi.   Kathi

Hi Amanda,
I was just wondering do you know what your Vitamin D levels are?  I have read/been told that a low vitamin D has an impact on low urinary calcium output as well.  Looking at your numbers it does seem to be increasing as the year goes on, i.e. more sunlight.  My Vit D was 42 in June so heaven knows what it was back in February when I did my 24hr collection.  I hope you get your results back as soon as possible.  
I've not been posting much recently as have been in a pretty dark place, am finding  each day hard to get through at the moment, but then I know it is the same for all of us here.  I type stuff and then delete it as it sounds so sorry for myself and normally and outwardly  I was always a happy go lucky, hey am up for it but sensible kinda gal, I don't recognise me anymore.
Hugs Sue

Hi Sue
So sorry to hear you are going through it a bit at the moment - although that sounds like putting it lightly.

Don't delete the sorry-for-myself-stuff. Post it on here. Someone else is bound to have felt the same way and will give you their take on how you feel, as well as suggestions for things you may not have thought of.
And believe it or not, hearing your "dark" stuff makes a lot of us glad that we are not alone in feeling the same way.

Are things running a bit too slowly for you at the moment in your area? Or are you feeling really unwell?

A lot of us here don't recognise ourselves anymore - it seems to be part of the HPT process, so you are not alone.

Let us help if we can - Brigitte is a great cyber-hugger, I can do GBH too (great big hugs), Amanda and Jasmine have been through most of what HPT can do to the human frame, and Dr Aud and Everyone else will be glad to chip in, too.

You're amongst friends, Sue - on the dark as well as the sunny days.

Love from Tigerlily xxxx

Hi Sue, I'm sorry you're having a rotten time at the minute, we always feel we have to put on a smile even if we feel awful which is why this forum is so wonderful as you can be yourself and know you'll just find sympathy, understanding and virtual hugs xx

Hi Ladies
Kathi the UK reference range is 2.5-2.75. I don't think I could actually function at all if I stopped taking them and I have tried telling Endo but she doesn't seem to register most things, except FHH !!!!
Hi Sue I'm so sorry you are having an awful time, it's so unfair but please don't delete how you are feeling on the forum, we are all here to listen and help, I would hate to think that you felt that down and couldn't share it with us. I'm the biggest moaner around but I know you guys understand that it's not just me feeling sorry for myself and you always pull me back from the edge  It's not just the feeling unwell that gets us it's the feeling of the blackest cloud descending and not being able to fight your way out. Unfortunately this goes with PTH disease and if you go to the GP all you will get offered is antidepressants !!
I can tell you are a lovely person and I know the feeling of not recognising yourself any more, let us help when you feel down, nothing you can say will make us feel anything other than wanting to get you through the tough patch.    
My vit d is normally around 55 but last time after some supplements (endo thought all symptoms were due to low vit d !!!!!) it went to 74 and I feel worse not better.
Love n hugs to all Amanda xxxx

Thanks so much to you all, Tigerlily, Meggy and Amanda,
You all have written such kind words and here I go again, tissue in hand, seems to be the norm for me at the moment, slightest thing will set me off and then I feel better for a while and try and put my normal head back on and carry on as we all do.  I don't want to hijack your thread so will start a new one and see what you think I should do.  I know you all understand as you are all suffering this horrible disease and probably more than I am, I do have days where I wonder if it is all in my head and not my neck  but then it hits again and I ache all over.  If I could get some answers as to what this lump/swelling in my neck actually is then I would probably be able to stop worrying and panicking which is at the root of all this anxiety.  It just seems to take far longer than I ever imagined and the more consultants involved, the more they point towards my endo ( who is lovely) and say he can manage me.  You all are a really great bunch and all your lovely words really do help and are much appreciated.  
Big hugs back to you all,
Sue x

Sue, definitely don't delete how you are feeling because you'll feel so much better just writing it down and sharing with people who understand exactly how you're feeling. I don't think I could have coped going through this alone without being boosted by everyone here with support, ideas and genuine sympathy and encouragement. We are all here for you. Massive cyber hugs to cheer you up. 

My opinion on Vit D varies but I was told that was why the urine calcium output was low. I don't have a choice in taking it because my anti epileptic med lowers Vit D levels so I have to take it. 

This damned disease takes you through the wringer in so many different ways. I just thought I'd mention that I'm heartily sick of it   

Love and loads of hugs 
Brigitte xxxx

Oh, no, sorry to hear you're having such a rough time, Sue! Never fear, we're always here to toss you a rope if you're feeling lost at sea. We've all been there, and we've all saved each other in time of need. Yes, this disease is HELL, but there is always hope of feeling better and being well again. I know it's hard to see sometimes, but there really is a light at the end of this long, depressing, painful, miserable tunnel! We are always here to listen when you need to share your feelings and experiences. We've all been there. We do understand.

Look up in the sky. Is it a bird? Is it a plane? No, it's Super Surgeon coming to save you all from this horrid disease! Never fear!

Audrey

Super Surgeon    I'm hoping he'll go into Red Alert mode when I see him on 1st September! 

There you go, Sue, always someone around to make you smile   

Love and hugs 
Brigitte xxxx

Thanks Brigitte and Audrey,
You guys are the best, thanks for throwing me a rope, I'm hanging on and not letting go, I think half of it is not knowing what I am dealing with as regards this swelling on my neck, but maybe I will get an answer a week on Friday.  I too have been having major problems with my ears and I know it is all connected with my neck, off with my head as the Queen of Hearts would say, that will cure me lol
Hugs Sue x

Sue there's many times I would just like to remove my head and put a new one on and it's not for a younger one, just one that hasn't got any PTH problems and doesn't hurt constantly  
Has anyone given you any indication of what they think the swelling might be ? When will you be given answers, if it's the Endo give that as another reason you are glad you had earlier appointment and tell him it's stressing you out so much that it's making you even more ill and you can't carry on like that.
Hope you get those answers you need very soon.
Love n hugs    
Amanda xxxx

Thanks for the UK range on the 24 hour. You only had one low the rest seems to be above range. That is if I am reading this right. Hugs to you   Kathi