Newly diagnosed: My doctor says I have... - dRTA (distal Rena...

dRTA (distal Renal Tubular Acidosis)

Newly diagnosed

BumbleBeeBumble
BumbleBeeBumble

My doctor says I have this but said a nephrologist would have to figure out what type. But based on everything I read says urine is alkaline with RTA. But my urine is always 5.0. So I am a bit confused.

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RTA is a complex disease and I know I was left with many questions as well initially upon receiving my diagnosis. A nephrologist will definitely be able to better explain the disease (including your urine PH questions), especially once they’ve confirmed the diagnosis & made a determination which type you have. There is a renal tubular acidosis Facebook group as well that may help offer you insight and support. Best wishes!

Hi, your urine is much too acidic. Has your serum bicarbonate been tested?

Does your potassium determination tend to be high normal or even high at times or often? Or is it the opposite (low)?

My potassium had been too low. The lowest was 2.5. Other times it hovering in the 3.0 to 3.4 range. Then they put me on potassium pills and my potassium went up to 4.7 and doc took me off potassium because he did not want it to get too high.

So oddly enough it seems to be quite variable. It's like sometimes I am not losing potassium and other times I can lose a lot of potassium in the matter of a few hours. I can usually tell when it happens quickly like that. I usually end up in the hospital.

Since making this post my doctor has clarified that I have Proximal RTA. He has been in contact with the local nephrologist and he agrees. Just can't get me in until April. I do not believe my serum bicarbonate has been tested yet.

Hi BumbleBeeBumble, thanks for the information. I also have RTA except my potassium is too high rather than too low, and my experience is only with that type (type 4, distal, or hyperkalemic RTA). I happen to know, however, from the professional literature that proximal RTA (aka type 2 RTA) is impairment in bicarbonate resorption in the proximal tubules and that it produces alkaline urine (pH > 7) if serum bicarbonate concentration is still normal, but if that concentration is already depleted (due to all the losses), then your urine pH is around 5. Your physician will most likely prescribe some alkaline agent, like good old sodium bicarbonate (aka baking soda :)).

I see that you are scared about the eGFR dropping 5 points – would you believe that mine has been seen to drop as many as 17 points and I am still kicking? :) (It did jump back up...)

Do you also have chronic kidney disease (CKD)? If you do, and if you have a record of all your serum creatinine levels and the date of each, then I can be of further help to which you are most welcome.

I don't know if I have Kidney disease. I have kidney pain off and on for years but the one doctor that did an ultrasound did not fibd anything. I had surgery a few months back and had terrible kidney in both kidneys shortly afterwards. And they could not determine what was causing it after doing an ultrasound.

My guess is I am in the very early stages of something involving my kidneys.

I suspect whatever it is is genetic. My mother can't keep her potassium up either. But she chooses not to investigate just keeps taking potassium.

The potassium pills make me nervous personally because I am not always wasting potassium. So I worry about hypokalemia.

Sorry about typos. Touch screen is touchy.

Ooops...Sorry about confusing you with someone else who was scared of their eGFR dropping 5 points. My apologies...

That makes the two of us: I, too, am worried about hyperkalemia.

Does your Mom know how dangerous hyperkalemia is and why?

You are so right about being concerned! BTW, my potassium is also dancing around, like yours, even though you and I have different types of RTA in that I have too much of it and you tend not to have enough..

As for finding out about CKD, you can ask for blood test for eGFR, and also urine test for protein, blood, and infection. In your stead I would ask my physician if you could get tested for CKD, since RTA can progress to CKD.

I will do that.

I am a little skeptical of my diagnosis. Maybe it's just denial. It just seems strange that my potassium dances around like it does. And I don't have kidney stones like others have.

Well, you can have one of three types of RTA: distal, proximal, or hyperkalemic. Your potassium tends to be low, hence you cannot have hyperkalemic RTA like me. Your urine pH is 5, hence you cannot have distal RTA because the pH of that is always greater than 5.5. Ergo your RTA imust be proximal – if you do have RTA. The dancing potassium does not exclude the diagnosis of RTA.

Has a physician diagnosed your kidney pain as being KIDNEY pain in fact?

Kidney pain can be caused by many things but RTA is not one of them,

unless kidney stones are a symptom of your RTA which they are not.

If you do have RTA, then the nephrologist is right: it must be proximal (Type 2).

Do you in fact have RTA, though? Only a nephrologist can tell by diagnosing it for you . We are not supposed to and are unable to diagnose here.:) I do know though that the procedure for diagnosing RTA is quite involved.

My internist actually worked with the nephrologist and confirmed with him based in all my tests. The nephrologist agreed that I have RTA. But he can't actually see me until April due to him being the only nephrologist in the area. He is having me do blood draws weekly and is monitoring my blood tests.

Great! Lucky you! You have access to a nephrologist. In my country here (Sweden) I have none. I can't even get to talk to a kidney nurse. I have to wait for stage 4 to see a nephrologist.

I wish you the best.

Omg really!?! Why do they make you wait so long?

It is most likely an economic decision. But I can ask Dr. Spry questions. You can, too: kidney.org/content/ask-doctor

I'd better retire, it is past 3 AM in Stockholm, Sweden! God natt! (Good night!)

Dr.Spry has already answered you! If he has not quite answered you completely, you can keep asking him specific questions. Good luck, BumbleBeeBumble!

Nice. Where do i see the response? I have not received an email as of yet.

Posted on March 5, 2020by National Kidney Foundation

Type 2 or proximal renal tubular acidosis (RTA) should be associated with a low serum bicarbonate level and may be associated with a low serum potassium. There are a number of other hypokalemic (low serum potassium) syndromes that include hypokalemic periodic paralysis, Liddle’s syndrome, Bartter’s syndrome, Gitelman’s syndrome and distal renal tubular acidosis (Type 1 RTA). The potassium should usually be in the form of potassium bicarbonate or potassium citrate for Proximal RTA. Further testing may be needed.

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