Doctor says I have Renal Tubular Acidosis

[Callmestar]

I've been away from the forum for a while but I can't say my health has improved much. I've posted previously about my ongoing issue of thirst, frequent clear urination and dehydration which I won't bore everyone with again but if interested I posted about it here: Chronic health problem (Dehydration) - Faint hope somebody here might have some ideas

Anyway, I recently saw a consultant who currently specialises in M.E./CFS but used to work with renal patients and he seems to think based on my symptoms I have Renal Tubular Acidosis. I'm unsure if he's right or not. It seems possible but the specifics of the symptoms seem somewhat vague.

My eGFR and my electrolyte bloods are normal but my creatinine and uric acid have often been slightly elevated and above normal range. I also had an anion gap blood test once and that was also slightly high which can indicate acidosis.

Pretty much all other obvious causes for my ongoing frequent urination and thirst have been excluded so perhaps it could be this Renal Tubular Acidosis? I do wonder how/why I would have suddenly developed such an issue literally overnight. Also wondering what I can do about it if does end up being the correct diagnosis. I am waiting for the consultant to come back to me re renal testing for this condition.

Outside of this, I've been on Thyroid T3 for about 6 months and B12 injections for about 4 months. These seem to have taken me up a level to where I'm not feeling like I'm literally dying and practically bed bound but they haven't touched the dehydration issue. I expect whatever has been going on with the dehydration has caused hypothyroid, b12 deficiency and various other issues I'm patching up, but I am yet to find a solution for the underpinning issue of this unbearable thirst and constant fluid loss.

If anyone knows anything about Renal Tubular Acidosis or perhaps acidosis in general, I'd appreciate your thoughts.

 

[redsun]

I've been away from the forum for a while but I can't say my health has improved much. I've posted previously about my ongoing issue of thirst, frequent clear urination and dehydration which I won't bore everyone with again but if interested I posted about it here: Chronic health problem (Dehydration) - Faint hope somebody here might have some ideas

Anyway, I recently saw a consultant who currently specialises in M.E./CFS but used to work with renal patients and he seems to think based on my symptoms I have Renal Tubular Acidosis. I'm unsure if he's right or not. It seems possible but the specifics of the symptoms seem somewhat vague.

My eGFR and my electrolyte bloods are normal but my creatinine and uric acid have often been slightly elevated and above normal range. I also had an anion gap blood test once and that was also slightly high which can indicate acidosis.

Pretty much all other obvious causes for my ongoing frequent urination and thirst have been excluded so perhaps it could be this Renal Tubular Acidosis? I do wonder how/why I would have suddenly developed such an issue literally overnight. Also wondering what I can do about it if does end up being the correct diagnosis. I am waiting for the consultant to come back to me re renal testing for this condition.

Outside of this, I've been on Thyroid T3 for about 6 months and B12 injections for about 4 months. These seem to have taken me up a level to where I'm not feeling like I'm literally dying and practically bed bound but they haven't touched the dehydration issue. I expect whatever has been going on with the dehydration has caused hypothyroid, b12 deficiency and various other issues I'm patching up, but I am yet to find a solution for the underpinning issue of this unbearable thirst and constant fluid loss.

If anyone knows anything about Renal Tubular Acidosis or perhaps acidosis in general, I'd appreciate your thoughts.

I assume you don't consume caffeine at all or anything else that is a diuretic and you are getting plenty of sodium?

Don't know if you ever tried zinc for this but it may improve your ability to retain sodium and water and thus improve hydration. The ACE enzyme is a zinc metalloenzyme which converts angiotensin I to angiotensin II which then increases catecholamine, aldosterone, and vasopressin release.

The enzyme, carbonic anhydrase, is also a zinc dependent enzyme which converts CO2 to bicarbonate. Renal tubular acidosis would show low potassium and bicarbonate in the blood. Zinc deficiency reduces activity of carbonic anhydrase.

I saw your blood tests from your other thread, did you ever get tested for zinc deficiency?

[Changes in the activity of plasma renin and aldosterone induced by a pattern of increasing administration of zinc sulphate in normotensive individuals] - PubMed

The behavior of the renin-angiotensin-aldosterone system was evaluated in response to an increasing zinc intake. This oligoelement can modify the activity of the angiotensin I converting enzyme (ACE). Six healthy normotensive volunteers received 30 mg of zinc sulphate orally for 4 days and 600...

pubmed.ncbi.nlm.nih.gov

"The behavior of the renin-angiotensin-aldosterone system was evaluated in response to an increasing zinc intake. This oligoelement can modify the activity of the angiotensin I converting enzyme (ACE). Six healthy normotensive volunteers received 30 mg of zinc sulphate orally for 4 days and 600 mg for 4 additional days. On the first, fifth and ninth days plasma renin activity (PRA) and serum aldosterone were measured, and the possible changes in blood pressure were evaluated. PRA and aldosterone showed significant increases, with a stepwise distribution throughout the zinc overload. On the first day, PRA was 0.40 +/- 0.08 ng/ml/h; on the fifth day it was 0.80 +/- 0.21 ng/ml/h, and on the ninth day 1.39 +/- 0.34 ng/ml/h (1st-5th day; p less than 0.05; 1st-9th day: p less than 0.02). On the first day, the aldosterone levels were 81 +/- 17 pg/ml, on the fifth day they were 119 +/- 26 pg/ml, and on the ninth day 164 +/- 30 pg/ml (1st-5th day: nonsignificant difference; 1st-9th day: p less than 0.02). The values of arterial pressure did not change significantly after zinc overload. It is concluded that zinc overload can modify PRA and aldosterone levels, and that these changes are dose-related."

 

[VitoScaletta]

I think it would be very useful to get a variety of opinions by going to as many doctors as you can if this is possible.

I think it's common for people to underestimate how common misdiagnoses are, and if doctors consistently don't help them or dismiss their symptoms, people who go through this start to dismiss all doctors. By don't help, I mean you go in ( in hindsight )clueless and go with the diagnosis you received, and start a useless treatment which doesn't help you even after potentially a long term period of time, and you end up just wasting time, and in certain specific medical conditions where there's potential ongoing damage people sometime go years without getting the treatment they need to start because they were misdiagnosed and all this time they werent getting the treatment for their degenerative problem there's some damage happening, as an example. This is unbelievably common.

It's more useful to go to an actual consult with a doctor who actually encounters a lot of patients frequently, and has a lot of experience in the exact field you need to be consulted in then just some doctor in the field who has relatively little experience and hasn't worked as long in the field you need his opinion on. People often think all doctors are the same but this is very far from true. Often those more experienced who see a lot of patients, AND well-reputable (best way to know who is reputable is not by online reviews or if they're a Professor in a hospital, but by what other doctors and sometimes what other previous patients of theirs think) doctors who work in the particular field you need to get a consultation or his opinion with they have a higher change of figuring out a vague problem due to their previous experience and more likely of figuring out the problem and giving you the correct diagnosis. And after that you get another opinion, and another. Until hopefully you get a solid picture or ideally the diagnosis makes as much sense as it possibly can

I think you should see who people recommend and go get a variety of opinions from consultations with doctors who are considered reputable.
Also, maybe ask in any consultations with anyone you talk with if the individual symptoms you notice can be considered relevant or not, so you can be as concise as possible when talking with doctors about it, doctors dont like when someone talks too much to put in bluntly at some point they stop listening well

 

[Callmestar]

I assume you don't consume caffeine at all or anything else that is a diuretic and you are getting plenty of sodium?

Don't know if you ever tried zinc for this but it may improve your ability to retain sodium and water and thus improve hydration. The ACE enzyme is a zinc metalloenzyme which converts angiotensin I to angiotensin II which then increases catecholamine, aldosterone, and vasopressin release.

The enzyme, carbonic anhydrase, is also a zinc dependent enzyme which converts CO2 to bicarbonate. Renal tubular acidosis would show low potassium and bicarbonate in the blood. Zinc deficiency reduces activity of carbonic anhydrase.

I saw your blood tests from your other thread, did you ever get tested for zinc deficiency?

[Changes in the activity of plasma renin and aldosterone induced by a pattern of increasing administration of zinc sulphate in normotensive individuals] - PubMed

The behavior of the renin-angiotensin-aldosterone system was evaluated in response to an increasing zinc intake. This oligoelement can modify the activity of the angiotensin I converting enzyme (ACE). Six healthy normotensive volunteers received 30 mg of zinc sulphate orally for 4 days and 600...

pubmed.ncbi.nlm.nih.gov

"The behavior of the renin-angiotensin-aldosterone system was evaluated in response to an increasing zinc intake. This oligoelement can modify the activity of the angiotensin I converting enzyme (ACE). Six healthy normotensive volunteers received 30 mg of zinc sulphate orally for 4 days and 600 mg for 4 additional days. On the first, fifth and ninth days plasma renin activity (PRA) and serum aldosterone were measured, and the possible changes in blood pressure were evaluated. PRA and aldosterone showed significant increases, with a stepwise distribution throughout the zinc overload. On the first day, PRA was 0.40 +/- 0.08 ng/ml/h; on the fifth day it was 0.80 +/- 0.21 ng/ml/h, and on the ninth day 1.39 +/- 0.34 ng/ml/h (1st-5th day; p less than 0.05; 1st-9th day: p less than 0.02). On the first day, the aldosterone levels were 81 +/- 17 pg/ml, on the fifth day they were 119 +/- 26 pg/ml, and on the ninth day 164 +/- 30 pg/ml (1st-5th day: nonsignificant difference; 1st-9th day: p less than 0.02). The values of arterial pressure did not change significantly after zinc overload. It is concluded that zinc overload can modify PRA and aldosterone levels, and that these changes are dose-related."

Thanks. Yes, I don't touch coffee or anythig that might have a diuretic effect now. If I drink coffee my urination gets even worse, every 20 mins, a clear full bladders worth of urine to wee out. I've gone through various phases of tons of sodium and then not so much, I can't say I notice any benefit in fluid retention from more sodium.

I've never had a zinc blood test no. Maybe that's something to explore. I was supplementing with zinc up until a couple of months back. I've had this issue for 6 years. Very interesting what it does for atecholamine, aldosterone, and vasopressin though so I will look into it. Right now i'm trying to conclude or exclude if I have this renal tubular acidosis.

 

[Callmestar]

I think it would be very useful to get a variety of opinions by going to as many doctors as you can if this is possible.

I think it's common for people to underestimate how common misdiagnoses are, and if doctors consistently don't help them or dismiss their symptoms, people who go through this start to dismiss all doctors. By don't help, I mean you go in ( in hindsight )clueless and go with the diagnosis you received, and start a useless treatment which doesn't help you even after potentially a long term period of time, and you end up just wasting time, and in certain specific medical conditions where there's potential ongoing damage people sometime go years without getting the treatment they need to start because they were misdiagnosed and all this time they werent getting the treatment for their degenerative problem there's some damage happening, as an example. This is unbelievably common.

It's more useful to go to an actual consult with a doctor who actually encounters a lot of patients frequently, and has a lot of experience in the exact field you need to be consulted in then just some doctor in the field who has relatively little experience and hasn't worked as long in the field you need his opinion on. People often think all doctors are the same but this is very far from true. Often those more experienced who see a lot of patients, AND well-reputable (best way to know who is reputable is not by online reviews or if they're a Professor in a hospital, but by what other doctors and sometimes what other previous patients of theirs think) doctors who work in the particular field you need to get a consultation or his opinion with they have a higher change of figuring out a vague problem due to their previous experience and more likely of figuring out the problem and giving you the correct diagnosis. And after that you get another opinion, and another. Until hopefully you get a solid picture or ideally the diagnosis makes as much sense as it possibly can

I think you should see who people recommend and go get a variety of opinions from consultations with doctors who are considered reputable.
Also, maybe ask in any consultations with anyone you talk with if the individual symptoms you notice can be considered relevant or not, so you can be as concise as possible when talking with doctors about it, doctors dont like when someone talks too much to put in bluntly at some point they stop listening well

I've seen probably 10 hospital consultants from different specialties and another 10 or so other types of doctors, functional medicine docs etc. None have really come up with anything particularly useful so yes, you do get to a point where you start to dismiss most doctors.

The chap I saw recently who suggested this condition is supposedly one of the top M.E. specialists her in the UK but has also worked in various areas as a hospital consultant I believe and with Renal patients, hence maybe he recognized these symptoms and is correct or perhaps was simply biased towards this conclusion as it's a condition he's come across before. Either way I need to follow it up. One of the few consultants I haven't seen is a nephrologist/kidney/renal specialist.

 

[redsun]

Thanks. Yes, I don't touch coffee or anythig that might have a diuretic effect now. If I drink coffee my urination gets even worse, every 20 mins, a clear full bladders worth of urine to wee out. I've gone through various phases of tons of sodium and then not so much, I can't say I notice any benefit in fluid retention from more sodium.

I've never had a zinc blood test no. Maybe that's something to explore. I was supplementing with zinc up until a couple of months back. I've had this issue for 6 years. Very interesting what it does for atecholamine, aldosterone, and vasopressin though so I will look into it. Right now i'm trying to conclude or exclude if I have this renal tubular acidosis.

Right well I would go for those tests as soon as convenient. They'll test bicarbonate, potassium, acidity, that sort of thing to diagnose. Zinc is needed to make bicarbonate in the blood from the CO2 you produce. If you can also get plasma zinc test that would be a good idea to rule it out.

 

[OliviaD]

I've been away from the forum for a while but I can't say my health has improved much. I've posted previously about my ongoing issue of thirst, frequent clear urination and dehydration which I won't bore everyone with again but if interested I posted about it here: Chronic health problem (Dehydration) - Faint hope somebody here might have some ideas

Anyway, I recently saw a consultant who currently specialises in M.E./CFS but used to work with renal patients and he seems to think based on my symptoms I have Renal Tubular Acidosis. I'm unsure if he's right or not. It seems possible but the specifics of the symptoms seem somewhat vague.

My eGFR and my electrolyte bloods are normal but my creatinine and uric acid have often been slightly elevated and above normal range. I also had an anion gap blood test once and that was also slightly high which can indicate acidosis.

Pretty much all other obvious causes for my ongoing frequent urination and thirst have been excluded so perhaps it could be this Renal Tubular Acidosis? I do wonder how/why I would have suddenly developed such an issue literally overnight. Also wondering what I can do about it if does end up being the correct diagnosis. I am waiting for the consultant to come back to me re renal testing for this condition.

Outside of this, I've been on Thyroid T3 for about 6 months and B12 injections for about 4 months. These seem to have taken me up a level to where I'm not feeling like I'm literally dying and practically bed bound but they haven't touched the dehydration issue. I expect whatever has been going on with the dehydration has caused hypothyroid, b12 deficiency and various other issues I'm patching up, but I am yet to find a solution for the underpinning issue of this unbearable thirst and constant fluid loss.

If anyone knows anything about Renal Tubular Acidosis or perhaps acidosis in general, I'd appreciate your thoughts.

I think you are wise to question this diagnosis, but if your practitioner suspects it, you best go see a nephrologist, as this is very complicated.and not something that anyone could diagnose based on "symptoms", nor from any of the test results you have. First - Renal Tubular Acidosis is considered a rare disease, so you would want to make sure other causes for your symptoms are ruled out. There are also 3 or 4 kinds (depending on who you talk to) - based on where in the renal tubules the problem is, and the mechanism of each is slightly different. All involved the kidney not being able to acidify the urine, or probably excrete H ions, but the mechanism will be different depending on the type. Usual lab signs are decreased blood bicarbonate and potassium, and anion gap is usually normal. This problem usually is associated with other diseases , or can be the result of toxic medications (i.e HIV drugs) and often presents in childhood. Frequent urination is not usually a main symptom.

I assume your practitioner is thinking this b/c of your fatigue? Fatigue is a symptom, but you would but there are usually significant electrolyte abnormalities - so I would expect those would be out of wack in your blood and urine. One type involves an issue with aldosterone, so that should be checked.

Treatment is 'alkaline therapy" - basically drinking baking soda - something you could easily try in the meantime, and see if it helps, as there would be little downside.

Have you had a full urine and blood panel? I assume your blood sugar is normal?
What kind of practitioner are you seeing - b/c I assume he referred you to a nephrologist if this is what he suspects?

Remember - blood tests are just statistical averages, so a test slightly above or below 'normal' one time is not necessarily meaningful. And - on the contrary - 'normal' lab values don't always mean there isn't a problem. However - in your case - high creatinine and high uric acid could be present as a result of being dehydrated - and as I understand, you say that you have been chronically dehydrated; so in your case they might not be indicating any kidney disease - and as mentioned, these aren't the issues one sees with tubular acidosis.

I guess the ? is why are you dehydrated? Does your urinary output exceed your input greatly - i.e. do you urinate excessively - always, not just with caffeine? I assume you've have relevant hormones checked - ADH, aldosterone - because that seems like a good place to start. Hi creatinine, uric acid and frequent urination can also be seen with diabetes, but I assume you've been screened for that.

I think you've gotten some good advice from others re: getting some more opinions. When you say you are 'dehydrated' how is this measured? Are your mucous membranes dry, etc.? (you have some blood levels that support this, but just wondering how you or your practitioner determined this). Someone above also mentioned a low salt intake as a problem - and it could be as simple as that. Many people who are dehydrated are told to drink a lot of water, which they do, but they don't take in an equal amount of electrolytes, so they end up being salt deficient and that it what is driving the dehydration.

Couldn't hurt to increase the salt, drink some bicarb and water.. and just see how that works while you are waiting to make appointments or hear from docs. Those things will either 1. do nothing 2. help 3. make things worse (in which case you would stop immediately). #3 is highly unlikely. The salt should help you hold on to your water and you might feel a lot better. Keep us posted.

 

[Cow]

Hi, just saw your post and noticed in your bloodwork in your other thread that your ferritin is pretty high above the optimal range. I mention this because my nephew had an issue for a couple years where he was rabidly thirsty and was drinking 2 gallons of water a day because he could not help himself as the thirst would drive him mad. On his bloodwork he had elevated ferritin, and that turned out to be the issue. I should also mention that he is transitioning and is given testosterone which doctors said contributed to the high ferritin. Anyway, they now have him give blood regularly which has brought his levels way down, and the situation resolved.

 

[redsun]

@Callmestar any update on a confirmed diagnosis?

 

[Callmestar]

@Callmestar any update on a confirmed diagnosis?

Hey, sorry just seen this. No, i'm still awaiting testing. I've noticed my urine is always alkaline though which can be a sign of tubular acidosis.

 

[Deadpool]

Dude, Ive been having the exact same symptoms with CFS, clear alkaline urine constantly etc and Ive also read about renal tubular acidosis and how it might apply to my problem.

Ive noticed that ever seen Ive been applying topical magnesium over night, my breathing gets heavy and I feel overall acidic. Same goes for potasium chloride.

I was thinking maybe the chloride has aggravated any existing acidiosis problems.

Also, I was trying vitamin b1 in multiple forms. It acts as a carbonic anhydrase inhibitor so even further aggravating acidosis in some cases I guess. I even found a post about it and he fixed it with baking soda but I am not sure if that is the solution, taking b1 and then baking soda.

Please do the tests and see whats going on. I have no doctor that is listening to me or even wants to do any tests. 24 years old with extreme fatigue .

Even tiny doses of b1 literally make me feel like I am dying and feeling like I cant breathe at all. Everything feels off.

 

[Callmestar]

Dude, Ive been having the exact same symptoms with CFS, clear alkaline urine constantly etc and Ive also read about renal tubular acidosis and how it might apply to my problem.

Ive noticed that ever seen Ive been applying topical magnesium over night, my breathing gets heavy and I feel overall acidic. Same goes for potasium chloride.

I was thinking maybe the chloride has aggravated any existing acidiosis problems.

Also, I was trying vitamin b1 in multiple forms. It acts as a carbonic anhydrase inhibitor so even further aggravating acidosis in some cases I guess. I even found a post about it and he fixed it with baking soda but I am not sure if that is the solution, taking b1 and then baking soda.

Please do the tests and see whats going on. I have no doctor that is listening to me or even wants to do any tests. 24 years old with extreme fatigue .

Even tiny doses of b1 literally make me feel like I am dying and feeling like I cant breathe at all. Everything feels off.

I went to the emergency room and told them i've been told I have renal tubular acidosis and can't manage the symptoms anymore. They ran these bloods which include, PH, bicarbonate and chloride all of which were normal. These are usually off in acidosis so perhaps it's another thing that I don't have crossed off. Although i'm not sure this is the complete testing I need to exclude the diagnosis but from these bloods it doesn't look likely to be RTA.

 

[Vins7]

I went to the emergency room and told them i've been told I have renal tubular acidosis and can't manage the symptoms anymore. They ran these bloods which include, PH, bicarbonate and chloride all of which were normal. These are usually off in acidosis so perhaps it's another thing that I don't have crossed off. Although i'm not sure this is the complete testing I need to exclude the diagnosis but from these bloods it doesn't look likely to be RTA.

I have posts citing the same issues of dehydration and frequent clear urination. I haven't seen a normal yellow urine color in several years. I drink and drink and it's like I'm not hydrated, I get cold and I pee constantly. Many tests done and all is correct.
Once, I read the case of someone who had the same thing happening to him and who fixed it by treating his problem of intestinal dysbiosis caused by fungi. This could be my case since these problems began when I had appendicitis surgery and they gave me several courses of antibiotics during one year.

 

[Ras]

I have posts citing the same issues of dehydration and frequent clear urination. I haven't seen a normal yellow urine color in several years. I drink and drink and it's like I'm not hydrated, I get cold and I pee constantly. Many tests done and all is correct.
Once, I read the case of someone who had the same thing happening to him and who fixed it by treating his problem of intestinal dysbiosis caused by fungi. This could be my case since these problems began when I had appendicitis surgery and they gave me several courses of antibiotics during one year.

That sounds a bit like diabetes insipidus.