What type of doctor would know about low potassium & low phosphorous issues?

Mary

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I've been dealing with low potassium for several years and generally have it under control, now that I know what I'm dealing with. I take supplemental potassium gluconate several times a day and in the middle of the night.

In the last couple of years I've also become aware that low phosphorous is an issue for me, causing sometimes severe fatigue. I first stumbled across the issue of low phosphorous when I started taking thiamine a few years ago, and after an initial boost in energy for a few days, developed severe fatigue. This was similar to what happened when I started taking methylfolate, only the methylfolate caused my potassium to tank, whereas with the thiamine, it was my phosphorous which tanked. I determined this empirically. The fatigue felt different than low potassium, and it resolved when I increased my phosphorous intake.

I believe both the potassium and phosphorous issues were related, at least initially, to refeeding syndrome. But they are continual and ongoing, which I find a little puzzling, though I know persons with ME/CFS can have trouble keeping intracellular levels of potassium where they should be. Perhaps the same is true of phosphorous?

Anyways, low phosphorous is often difficult to manage - I'm often wondering, what is this type of fatigue - trying to identify it. It's hit and miss a lot. Low potassium is much easier for me to identify - my right foot starts twitching, getting little spasms. But with the phosphorous, it's just fatigue.

Does anyone know of any type of doctor who would know anything about these issues?
 

halcyon

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No idea, but if you find out let us know. I’ve consistently had problems with hypokalemia since day one of ME, and have also had low phosphate, though less consistently. I don’t think it has anything to do with those supplements, I don’t take them and I still have the same problem. I recently had a very severe exacerbation of my ME and ended up in the hospital for a week. I was hypokalemic the entire time I was there, even with the 60 mEq of potassium they had me on daily.

I’ve had 24 hour urine tests for potassium and phosphate, both normal. I think it’s not a true hypokalemia, there is a correct amount of potassium in the body, it’s just being driven into cells too much by some process I’ve yet to figure out.
 

Mary

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Hi @halcyon - right - I don't think the supplements are causing the problem, they alleviate symptoms and I definitely seem to need them, I'd be much worse off without them.
I’ve had 24 hour urine tests for potassium and phosphate, both normal. I think it’s not a true hypokalemia, there is a correct amount of potassium in the body, it’s just being driven into cells too much by some process I’ve yet to figure out.
Actually Richvank wrote about how people with ME/CFS often have the opposite problem - despite normal blood levels, they have low intracellular potassium. He explains why here.

If I find a doctor who can help with this, I'll post about it - I just have no idea whether to start with an endo or rheumy or whatever - they all scare me! :eek: I can just imagine trying to explain to a doctor about all the potassium I've been taking for years ….
 

halcyon

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Actually Richvank wrote about how people with ME/CFS often have the opposite problem - despite normal blood levels, they have low intracellular potassium
Ok, well I have had an EXAtest and my intracellular potassium was on the low side, but that’s looking at buccal cells. My point is that I consume K, I’m not peeing it out, so it’s going somewhere in my body outside the blood. My theory is that possibly activated immune cells like clonally expanding T cells are sucking it down, but I have no idea if that’s even plausible.
 

CFS_for_19_years

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Does anyone know of any type of doctor who would know anything about these issues?
Internist? (Not to be confused with an intern.) Someone who specializes in Internal Medicine.

https://www.acponline.org/about-acp/about-internal-medicine
General internists are equipped to handle the broad and comprehensive spectrum of illnesses that affect adults, and are recognized as experts in diagnosis, in treatment of chronic illness, and in health promotion and disease prevention—they are not limited to one type of medical problem or organ system. General internists are equipped to deal with whatever problem a patient brings—no matter how common or rare, or how simple or complex. They are specially trained to solve puzzling diagnostic problems and can handle severe chronic illnesses and situations where several different illnesses may strike at the same time.
 

Wonkmonk

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An endocrinologist is dealing with phosphate. It is affected by parathyroid hormone, so they know something about it.

Regarding potassium, I don't know exactly, but I think cardiologists deal with it a lot, because an imbalance can cause arrhythmias. Maybe a hematologist would also know something about it.
 

pattismith

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@halcyon

what about your thyroid panel?

my low blood potassium and sodium was probably related to my low T3 syndrome (with fT3 at the minimum of the normal range), so I just wonder...
 

pattismith

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Normal TSH and slightly elevated free T3 and T4.
I think that about all ME patients have disturbed intracellular ion fluxes (mainly calcium, potassium), but it is interesting noticing that different pathways can lead to these abnormalities.
 

Mary

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It’s phosphate diabetes I’m guessing
I've thought of this but I don't know what type of doctor would diagnose this - I'm guessing the vast majority have never heard of it. Now I'm thinking maybe a nephrologist because of the kidney involvement. But my kidneys seem to be okay … or an endocrinologist as suggested above
 
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Mary

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Last weekends NY times magazine medical mystery column might be if interest. Google it
Wow - what an interesting article! Here's a link for anyone who's curious: https://www.nytimes.com/2018/07/11/...vid-runner-now-she-could-barely-walk-why.html
The medical mystery was:
osteomalacia, a bone disorder linked to an overproduction of FGF23. Insogna, who had spent decades trying to better understand diseases of the bone, had seen a handful of patients who developed osteomalacia from FGF23 excess in adulthood. Those patients had benign tumors that secreted FGF23.
And the doctor who diagnose her was a bone specialist.

Thanks so much @aquariusgirl!
 

Wonkmonk

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Normal TSH and slightly elevated free T3 and T4.
That's strange, with fT3/4 above the norm, your TSH should actually be zero or at least below the norm. Is it always that way or just that one test?

It may be normal fluctuations (most likely), but it shouldn't be that way permanently (or you're the 1 in 100 who has abnormal values that are normal for you).

Do you have Hashimoto? This could be a Hashimoto push during which fTs go up temporarily, but TSH is normal because it takes several weeks of permanent fT elevation to react.

Or there may be a problem with the pituitary adenoma that leads to higher TSH than there should actually be (this is extremely unlikely, but not impossible).

It may be good to keep monitoring the TSH and fTs.
 

Neunistiva

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@Wonkmonk My GP only tested for TSH for years, which was always normal, until I insisted to have rest of the hormones checked. I too have normal TSH and slightly elevated fT3

@Mary I have been constantly hypokalemic for years now.. Doctors think it might be due to increased urination.

But I read on wikipedia that leaving the blood sample at room temperature for a few hours can cause pseudohypokalemia. I am bedridden and nurse comes take my blood. It definitely takes it a few hours to get to the lab. Now I'm not even aure if I have low serum potassium or if it's just an artefact.
 

halcyon

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That's strange, with fT3/4 above the norm, your TSH should actually be zero or at least below the norm. Is it always that way or just that one test?
My thyroid labs are usually all normal. The elevated T3/T4 was when I was in the hospital, in a fair bit of physical distress. I’ll be redoing those labs soon to make sure they’re not still elevated.
 

kangaSue

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I've thought of this but I don't know what type of doctor would diagnose this - I'm guessing the vast majority have never heard of it. Now I'm thinking maybe a nephrologist because of the kidney involvement. But my kidneys seem to be okay … or an endocrinologist as suggested above
I've come across a few people with similar symptoms where it was eventually found that they had renal artery stenosis, often fibromuscular dysplasia in a younger population (as opposed to atherosclerosis as the other main cause of this). Using a stethoscope, a murmur can sometimes be heard as an indication of the restricted kidney blood flow.
 

Mary

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I've come across a few people with similar symptoms where it was eventually found that they had renal artery stenosis, often fibromuscular dysplasia in a younger population (as opposed to atherosclerosis as the other main cause of this). Using a stethoscope, a murmur can sometimes be heard as an indication of the restricted kidney blood flow.
Thanks for the info (I think! :nervous:) No, really, thank you. What sort of doctor would do this? a nephrologist?