Consultant has me worried... ckd ..low calcium

[Debz1990]

Hi,

I'm 25, had a nephrectomy at 16, was told as a result I have mild ckd.... creatnine usually normal enough.. latest one 111 (Should be 60-90).

Went for annual check up and consultant looked worried, said my calcium and phosphate were altered, calcium 1.6 didnt say what phosphate was but said he'd expect to see those bloods in someone with much more advanced kidney disease. Was booking me in for ultrasound that day but had had a CT KUB done after rib pain two months ago which was fine so he said he'd put me on Calcholiferol (Vitamin D) and see me in 2 months, but that if there was no change we'd have to be having a big conversation.

Now I'm worried and was so taken back that didnt ask questions and I'm not sure what any of it means,

Can someone explain any of it?
I'm guessing the calcium loss is a sign that somethings going on in the kidney but just dont understand the mechanics of it to be honest.

Any advice, ideas?

Thanks

[wagolynn]

Hi Debbz1990,

The kidneys are involved in the control of Calcium levels and Phosphate, and the two are to a certain extent interrelated.

However, there can be other reasons as to why your Calcium is low.

Wait and see what the vitamin D does, and whatever the outcome, try not to worry. If, and at this stage it is IF, you have a kidney problem at is being caught early, and there may well be a good chance of correcting the situation.
Worry, in my experience never changes the situation.

How is your blood pressure, it should be kept low (about 130/80) to help to preserve kidney function

Go to your next appointment armed with a list of questions, most medical people I have met have been perfectly happy to answer questions for patients. They say, it's a welcome change to find patients showing interest.
I suggest you go with a written list of questions because once you are in there you tend to be overwhelmed by everything, well I did...

Best wishes...

[Debz1990]

Hi

Thanks for the reply. Consultant said it was more than likely kidney related cause my GFR is low even with my creatinine just at 110s. He told me to take vitamin D till Jan, but when I went to the chemist I had a 12 month supply on the prescription, bp is normally low but was 120s at the appointment but that's still normal enough.

Trying not to worry but I'm a nurse and have seen patients coming in and out with worsening renal disease, I just don't understand the mechanisms as have done no renal training myself. Knowing what can happen but not knowing what my hypocalcaemia is is driving me nuts!

If the calcium returns to normal does that mean I can come off the vitamin D?
Sorry for all the questions, I haven't told anyone in work about the cold so don't feel able to ask questions and the appointment isn't till jan 21st

Thanks

[wagolynn]

Hi Debz1990,

Re vitamin D - low vitamin D, in simple terms, (because I am simple ) makes the Calcium we take in in food available to our body to use. Some foods contain vitamin D, and when our skin is exposed to sunlight vitamin D is produced. It is not uncommon in the UK for people to be low on vitamin D due to insufficient exposure to the sun, and of course people with dark skins are in trouble in the UK. Some doctors think everyone should be taking vitamin D from about 40 years old onwards, they are assuming their kidneys are working.

It is not quite that simple though, if your kidneys stop regulating calcium levels then surplus calcium will be deposited in muscles, blood vessels, lungs, and joints, which is not good.

On questions, if you are 'in the trade', ask the doctors, if they don't know they should know some one who does.

I hope that helps a bit, you can always try your questions on here, I am sure contributors will try to help where they think they can.