24hr Calcium/creatine test anyone?

[Moggie]

Hi all,

My endo has ordered a 24hr calcium/creatine urine test to be done, after I asked for one due to high parathyroid/low vitD levels. Has anyone else had this done? is it reliable? and what am I looking for regarding results?

Thanks

Moggie x

[Jackie]

Yes, It is good as it shows, what is being excreted so a better guide than what is in the blood Did you have PTH, Corrected calcium and vit D taken together AM. ? If so, usually the next step ,if high, is a parathyroid nuclear scan, large teaching hospital and CT scan , also Ultra sound of thyroid..All 24 hour urine collections are very good.

Best wishes,

Jackie

[Moggie in reply to Jackie]

Hi Jackie,

My endo wont do a thyroid scan as, and I quote "whatever the outcome I would not act". Quite a broad statement to make!!!!! I pushed for the urine test but have now found out that it is also used to detect Paget's disease, which can be traced three generations back in the female member of my family. Paget's disease can also cause a high parathyroid level as the bones are always calling for more calcium plus high ALP levels - both of which I have - so am just trying to do some research.

Thanks for your input.

Moggie x

[Jackie in reply to Moggie]

Hi Well that is something.My PTH etc is very high but I am not allowed biopsies or treatment ie they would kill me. However, my PTH ( blood about double it should be) was OK., after the scans etc Thyroid needed biopsies but have to hope all OK, nodules and enlargement.If it was me ,I would see what she finds, and if nothing then press hard for the correct PTH scans etc. The GP could arrange it, if independent minded!Also if I disagree with a consultant I tell them, we are all human,the best ones, even make mistakes, I insist if I think wise. I am sure they love me!! My calcium etc did suddenly go up and it can just be cancer but lots of other possibilites , but if it is cancer of the PTH is totally curable with surgery as not connected to other things. It probably is all OK, but for your self, I think essential to know,, I would just see what is found first, then if needed go in with all guns blazing!!,

Best wishes,

Jackie

[Moggie in reply to Jackie]

Really have got a feeling its Paget's Jackie and nothing to do with my parathyroid. Other wonky bloods are also markets for Paget's and with my mothers family history I'm not holding out much hope that it isn't Paget's.

I will wait for the test results and when I see endo next I will mention the Paget's family history and see what happens. He is normal very good and, although a bit abrupt, does know his stuff and my calcium levels not being out of range seem to be convincing him its not a parathyroid problem.

If it is Paget's I will be down my GP's asking for an explanation as I pointed out the Paget's connection to her over two years ago when one of my results came back with a comment of "probably bone in origin" on it.

Bloody NHS - you just cant trust them can you.

Moggie x

[Jackie in reply to Moggie]

Hi Moggie, Thanks that is nice!

I do think you are right, as my PT,H calcium suddenly went over range,and the d went high, although under range. Fist we reduced ( Endo) the d, but eventually had to stop, I was on huge doses for Osteomalacia, but stlll went up, She did say the only test as, the 3 done together AM, the GPs did not seem to understand!not surprisingly! My D was still under range but went very high for me. All still bad but PTH Ok on investigation. I actually have suspect lumps lots of places, but cannot have biopsies treatment or anything. Not very nice. Why I say if you think there is a problem then do something.

It certainly sounds like Pagets, full marks to Endo ,especially not knowing family history.Diagnosis half the battle.

It is not just NHS, I now have brilliant docs, but had some terrible ones, privately or NHS. large famous teaching hosptal, made lethal mistakes.. That is why I never let them say anything important about treatment without questions!. Actually seeing my Cardio today, later, I know it will be a battle, Cardio`s are the worst, even the good ones ( he is). You know the joke, what is the difference between God and a cardio,, ? God does not think he is a Cardio. I am religious but so typical!

Best wishes,

Jackie

[Moggie in reply to Jackie]

Thanks for that Jackie and my endo knows nothing of my thoughts - this is all down to me.

I asked for the calcium/creatine ratio test to try and prove my parathyroid was playing up and on doing my research (as you do) found that it is also used to diagnose Paget's. I am now trying to find evidence that Paget's can/does cause a high parathyroid level to try and convince him to refer me to a ? (don't know what type of consultant Paget's comes under). How silly of you to think that this was all down to a good doctor, you should know better than that by now.lol.

How did the appt with the cardio go?

Moggie x

[Jackie in reply to Moggie]

Hi Moggie,

I see ,well done you. Mostly marked by showing on scans, Xrays and DEXA, high alkaline phosphate, bone profile bloods. Mayo clinic USA is the best site for looking up any thing as it is the one the consultants use, ( not sure if that is good or bad!)

As far as specialists, well the world is your oyster, as you know covers so much, but to start with Endo or Rheumatologist. A good one would know all about this.Mine is wonderful, has all sorts of good ideas, trouble is I keep having to say "too dangerous for me"Actually my Endo is too., and the same.look for a rheumy with a special interest, hospital sites then WEB for CV`s.

Cardio, mixed, he has changed my diuretics, which I needed, but he has put me on one of the ones, I was told would lower my potassium and give me a huge cardiac arrest if I went on it. He has been wrong a few times, once put me in a Coma, that was the worst! I had warned him against his dangerous treatment too. To be fair I am a nightmare for docs as so many co morbities., He always says I know more than cardio`s, and that I need to ,but of course, that does not include him! So, I will have a dicey few weeks, again!

Let me know ( PM ?) how you get on, I am really interested.

Best wishes,

Jackie

[Moggie in reply to Jackie]

Will do Jackie - also found a healthunlocked for Paget's (although it looks like they only have 3 or 4 members at the moment). Will certainly be looking at the Mayo clinic, so thanks for that.

Isn't if awful how we have to check and double check what these, so called, specialist are doing all the time, just in case they kill us!!!!!

Moggie x

[Moggie in reply to Jackie]

Sorry Jackie - forgot to say thank you for your help.

Moggie x