Fluctuating Creatinine Level:

[LindaJoy]

Hi. I've noticed a lot of you have experience with kidney problems / creatinine levels. I'd like to ask a question, if I may?

I've had pretty normal creatinine levels for years, but since last winter, my creatine levels have been fluctuating greatly. They'll go as high as 1.6, then come down to a normal level of 0.8. Since being put on gastrocrom and other meds for my eos. disease, they've rarely been normal. I see a kidney doctor whose main concern is my sodium level. As long as it's normal, he's happy. He also says I have Diabetes Insipidus, but has not done a fluid deprivation test. And, from what I've gathered from DI patients at a support group I joined, high creatinine levels aren't really a part of DI, unless you are severely dehydrated, of which I'm not.

Do any of you know what could cause a fluctuating creatinine level? My doctor says he's not concerned with it since it's fluctuating and not going progressively high and staying there, yet he says I do have chronic kidney failure, of which we're not addressing other than just keeping me hydrated (and maybe there is no other treatment right now).

Thanks.

Lindajoy

[flop]

Do you know what the units of your creatinine level are measured in? Also do you know the normal reference range for results from the lab that does your bloods? That would help you know how significant the fluctuation is.

Flop

[LindaJoy]

Hi, Flop, good to hear from you.

Yes, I've seen the lab results (they always printed them for me in the hospital), and the ranges are right beside my levels, so I can see where I fall, and they would print all of my tests, day to day, side by side, so they were easily comparable.

They found that as long as I was on an IV, my creatinine level would be normal. After coming off of an IV, it would go high again. They deduced that hydration had something to do with it, so they started to monitor my input / output a lot more closely. I kept my own tabs on this, and found that my output was seven times as much as my input. But, yet, even now, as my input and output are more close (I have to keep tabs on it all day long, every day, so I know that the numbers are a lot closer), some days the input even being higher, and I know my hydration is good (as I have to weigh myself morning and night, too--like is a bunch of numbers right now, but it's helping), my creatinine still fluctuates a great deal. I was having to have blood work done every other day for weeks, so I know it was fluctuating quite a bit.

I see a new kidney doctor in my area soon, so I'm hoping he'll be more patient to explain things to me. The kidney doctor I was seeing is an hour and a half away, so...

Linda

[flop]

Hi Linda,

good to hear that you are getting a more local doc to help you with all this. What are your input and output volumes (both the "bad" numbers before and now after altering how much you are drinking)?

I drink about 3-4 litres per day (rough estimate, I don't really count input any more). I know from when I do 24 hour urine collections for sodium levels that my output is more than 2.5litres as I have to ask for 2 urine containers not just one (very embarrassing!).

Have you had 24 hour urine collections done to measure protein in the urine? Normally kidneys shouldn't leak protein into the urine but in kidney failure there is often protein in the urine - it is another test the docs can do to keep an eye on your kidney function.

Flop

[LindaJoy]

Hi, again,

Yes, I've had 24 hour urine collects, and the latests showed some protein in the urine, but not a lot. My spot checks never show protein.

At my worst, my input was 1500 and my output was 7500. I can actually give you some good data here, as I've had to keep an input / output journal every day since February 21st.

Here's what I average:

In-put: 2532.5 per day.

Out-put: 2712.3 per day.

I average urinating 8.7 times per day.

I've found the stress (getting upset and arguing with my husband) makes my symptoms worse, as do new meds and my period.

My former kidney doctor said he didn't think I had kidney failure since my creatinine level was fluctuating and not progressively getting high. My neurologist verified this. I've not been able to find anything on the internet about fluctuating versus steadily increasing creatinine levels, except one article that said that one kind of cholesterol medication was found to do this in patients during a study taken.

Thanks.

Linda

[LindaJoy]

Sorry, all of my measurements are in mL. Sorry about that. Or, cc's. That's how they started me at the hospital, so I stuck with that measurement.

Linda

[flop]

Wow, 7500ml output - that's a lot! The average figures of about 2.5 litres in and out sound much better, you will also loose some fluid through breathing and sweating but then you also take in about a litre worth of water through food so it is probably all balancing for you at the moment. It does sound more like a fluid balance and dehydration problem rather than purely a kidney problem. I hope your new doc gets it all figured out, they may want you to see an endocrinologist too as there is a lot of hormone involvement in fluid balance control.

Flop

[mrsdavidson8605]

Hi,

My only insight with kidney problems was that I had a LARGE AV malformation in my left kidney, which was causing my left renal vein to be dialated. They thought for sure this was what was causing my POTS symptoms, but it's been almost 3 months since my surgery and i've had no change. There is a theory of a connection between problems with the left renal vein and POTS (look on this website under what causes POTS), but not sure if this applies to you. The only reason I even found this problem in the first place was that I was gonig throught he list of things on the website that could be the cause of POTS and the renal vein was on there, so I had a sonogram done, and sure enough my renal vein was messed up. Sorry I can't offer anymore help than that. Hope you're doing ok.

[LindaJoy]

Thanks, again, for the replies. I really appreciate the input!!

I've had an ultrasound done on my kidneys, which showed them to be a bit small for my age, body size, etc., but the docs weren't too concerned about that discovery.

Would an ultrasound show this renal vein you mentioned, Kansasgirl?

Thanks, again.

Lindajoy

[flop]

Hi,

a sonogram is another name for an ultrasound scan.