Nephrology Testing - Is It Worth It?

[hholmes13]

I've been a little frustrated lately. My neuro doc put me on salt pills to try and increase my bp since it was getting way too low last week (75/35) and have had lots of tachycardia. I've been doing that and haven't noticed a difference. I finally talked to him again today and he wants me to take even more salt pills (6 a day), ibuprofen to help absorb salt, and drink V8 juice. Between those and my midodrine and iron pills, I'll be up to like 17 pills a day. It's getting a little ridiculous. I've still had a few near-syncope episodes in the past few days regardless of the changes. My bp has stabilized but hasn't increased all that much above normal. I've been hanging around 95/50 or so.

I work in a research lab, and my boss specializes in kidney physiology. He has been recommending I see someone in nephrology to check out the renin/angiotensin/aldosterone levels and possibly figure out my actual GFR. It makes sense because the RAS system in the kidneys is what controls blood volume/pressure. If something is off there, that could be causing or contributing to my symptoms. Have any of you had any kidney tests done and was it worth it? What did they check on you?

[Chaos]

I haven't had the testing but I know several people on the site have had it done. Seems like a logical place to look for problems, but I'm not sure most nephrologists would have a clue about POTS type stuff. Similarly, it seems endocrinologists would have a VERY logical spot in the work-up for this stuff, but trying to find one that will work with you on anything other than diabetes is a no-go, for me at least so far.

Are you also drinking lots with all the salt you're taking? At least 2 and a half to 3 liters a day?

[louloutinks]

Interesting about the kidneys.

I was having some general labs done and they found my gfr was 49 stage 3 CKD. I have since had 2 more tests and there is an improvement to stage 2.

I have had no explanation why my kidneys are having problems - could this be autonomic?

[kluesyk]

I saw a nephrologist recently and found I have a problems with wasting magnesium from my kidneys and my GFR is in the 50's. I already take 700mg magnesium and soak in a magnesium bath(epsom salts) every night and still tested really bad on the amount of magnesium I was wasting. He told me it would bring down my potassium and sodium too if magnesium was out of balance which will make the POTS worse.

My serum magnesium is usually at the bottom of normal and my RBC magnesium is low 3.2 when the low normal is 4.0. Might explain some problems if my magnesium is off.

I was impressed by how MUCH this nephrologist knew about POTS. He actually put me on Clonidine which so far is the only drug I have been able to tolerate that helps at all. He wants me to take Zoloft, but I am still thinking about that....don't like antideprresants.

So yes, in my case it was worth seein the nephrologist.

[firewatcher]

I have a Nephrologist too. I wobble between stage 2 and 3 CKD of unknown cause. My nephrologist had said that once there is kidney damage, it is permanent, but that is not the case with me. She now believes that my kidney function is directly related to my volume status and blood pressure control. I have improved from a GFR in the high 40's to 50-normal.

[Dizzysillyak]

Does anyone have any updates in this ? Since I just passed another stone, I thought it might help to

see one of these docs ... Also do any of you get kidney stones or have frequent utis ?

Does anyone have primary hyperoxaluria ?