• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Doctor says he thinks I have renal tubular acidosis?

R

Replenished

Senior Member
Messages
247
Hi all, a specialist M.E. doctor who I paid to see today, listened to my symptoms and thinks I have renal tubular acidosis and that's likely leading my symptoms rather then M.E.

This condition has rarely if ever been mentioned to be by any specialist or anywhere I've posted about my symptoms. It seems very hard to get clear information on what the specific symptoms are of the condition.

I've posted many times here about my symptoms but just to remind people. Aside from fatigue and what appears to be POTS/Dysautonomia type symptoms, my main symptoms are extreme thirst, frequent urination, dehydration and what seems to be an inability to concentrate urinate. Diabetes insipidus has been ruled out.

Does this sound like renal tubular acidosis? If so is there anything I can do about it?

Obviously I will look into this more thoroughly now but I wondered what you guys think?
 
Last edited:
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,389
I"d try a good chinese herbalist and see if they could help. I typically try that route first, since I have access to a good herbalist here in town I've worked with for a long time.
 
R

Replenished

Senior Member
Messages
247
Rufous McKinney said:
I"d try a good chinese herbalist and see if they could help. I typically try that route first, since I have access to a good herbalist here in town I've worked with for a long time.
Click to expand...

But do you think it even sounds like renal tubular acidosis?

I actually got some herbs from the local chinese medicine chap last week who has good reviews. I haven't taken the herbs yet as they smelt exactly like damp/mould which is a trigger for me it seems. I looked at the herbs and they don't look damp or mouldy but the smell is so strong for now i've put off taking them. I wonder if/when they go out of date.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,389
Replenished said:
I wonder if/when they go out of date.
Click to expand...

the herbs I get are obtained from wholesalers who do testing. So they would not be moldy.

Chinese herbs smell amazing, since very single herb had some property or another. For me, fresh dehydrated herbs are the best but I ended up using granular because is FAR easier for me in my low energy state.

I currently use granular herbs, dehydrated teas, and I sometimes use a bottle I"ve had for four years and it still works, I can tell. Those are actually more expensive than raw herbs you cook yourself. But since it's all imports stuff, (unfortunately) prices have gone up considerably due to "supply chain".

I had a jar of goldenseal for fifty years. It always worked.
 
wabi-sabi

wabi-sabi

Senior Member
Messages
1,488
Location
small town midwest
My first thought is that if a doc that knows something about ME thinks that is not the main problem, listen!

Can you see a kidney specialist?

Can you GP order tests for renal tubular acidosis? It sure sounds like there should be some abnormal results not to be missed there.

Are you taking any medications or supplements that could cause renal tubular acidosis?
 
R

Replenished

Senior Member
Messages
247
wabi-sabi said:
Are there lab results that support this diagnosis? What testing did your doc do?
Click to expand...

I'm fine with it not being M.E. I do seem to match more of a dysautonomia condition now on top of the dehydration stuff.

He didn't run any tests himself, it was just a consultation but I advised him of my previous testing and symptoms. That I know of there aren't really any lab results to support that diagnosis of yet. My electrolytes are normal, my eGFR is normal, my creatinine has been high here and there which perhaps just indicates my dehydration. renal tubular acidosis seems a complicated condition and the symptoms listed seem to vary. I will look into it and i've already emailed a nephrologist with the suggestion but I spoke to this nephrologist about my symptoms a couple of years ago and he never mentioned renal tubular acidosis being a possibility.
 
Judee

Judee

Psalm 46:1-3
Messages
4,500
Location
Great Lakes
This seems like a good site for medical info on this and other kidney issues: https://www.merckmanuals.com/en-ca/professional/genitourinary-disorders/renal-transport-abnormalities/renal-tubular-acidosis?query=renal tubular acidosis
(There is a consumer view as well. I just glanced over both so I'm not sure of the differences.)

Edit: This seems like a good site as well and mentions in one place Fanconi Syndrome which has child onset but also mentions adult onset and sounds similar to what you have if you look it up. https://www.niddk.nih.gov/health-information/kidney-disease/renal-tubular-acidosis#treatment
 
Last edited:
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
Replenished said:
It definitely mimics the symptoms of Diabetes Insipidus and I don't concentrate urine normally but I had extensive testing for that and it's been excluded.
Click to expand...
Good to know. I assume the treatments have also been tried just in case?
 
R

Replenished

Senior Member
Messages
247
kangaSue said:
The solution to renal tubular acidosis is simple enough, just drinking some sodium bicarbonate.
https://www.niddk.nih.gov/health-information/kidney-disease/renal-tubular-acidosis
Click to expand...

Thanks. Yes, I've been drinking bicarbonate of soda in water since this was mentioned as a possible diagnosis. I don't feel any better for it. So either I don't have this issue or perhaps the dosage of bicarb isn't enough. Struggling to find details on how much one should be taking if they have renal tubular acidosis.
 
You must log in or register to reply here.