Kidney Crisis need help please

[chelsea49]

I had a serious health crisis two weeks ago that lasted for nine days, I was taking a tiny dose of potassium phosphate drops 4% of daily value only one drop a day, with a quarter of a lithium ortrate 5mg pill and I made a mistake by also taking my dads electrolyte supplement which had 100% of the recommended daily value for potassium in it (I only realised this after the crisis started). At first I noticed my bad brain fog/ dysautonomia from showers had gone since adding in the potassium supplements. I was taking the potassium as hair test showed low potassium and sodium, urine showed low sodium despite me having a high salt diet.


Then I started to wake up with kidney pain and the potassium drops would cause aching in the kidneys, intense inter cranial pressure, heart palpitations and irregular heartbeats, muscle spasms and cramps around kidneys and chest, dotted rashes on kidneys and chest (not hives), it felt like my body fluid and blood pressure kept switching from high to low, I kept having rashes on my feet and hot feet, pressure and soreness in abdomen (seemed unrelated to bowels), my heels of my feet were also sore to walk on at times, loss of appetite, feeling of pulse in stomach, coldness in arms. Rashes on feet were like bad livedo reticularis purple/reddish toes and rashes.


One drop of potassium phosphate just seemed to make my kidneys completely spaz out and send my whole body into overdrive.


All of this felt very serious and was so distressing I couldn’t carry out a simple activity such as writing a text, email or forum post or do anything at all for two weeks.


One night I ate a small red steak and I was in so much discomfort from the steak I couldn’t sleep (this never happens to me), I was considering going to the hospital but my symptoms didn’t match up to the ones you should go to the hospital for. I took a benfotiamine and it seemed to stop the discomfort that night and I woke up feeling better.


The kidney pain was never severe, it was more of an unsettling bad ache and the other symptoms that were unsettling me the most.


Meat seem to trigger all the symptoms off like the feet rashes one and sore heels, kidney discomfort, I also noticed my urine stream became very weak after consuming meat or protein and also less bubbles. When I cut out animal protein and the potassium my symptoms started to get better.


5 days later I have another night where I can’t sleep at all because my right calf starts hurting so much, lying down on my sides or front made it a lot worse but even lying on my back was bad. A thick vein had appeared on my right calf that I had never seen before attached pic bellow and my left calf had no veins like this. My right calf was never swollen and I woke up in the morning and the pain had gone.


So two nights now where I haven’t been able to sleep because of pain and discomfort which I’ve never had before.


I told the NHS GPs this all seemed like some electrolyte imbalance however the only test they wanted to do was a kidney function test.. So I had to get other tests done myself privately at great expense.

Both blood tests were done when I wasn’t in pain as it took a long time to get them done.

My GFR (kidney function) was 79 on wednesday when I got private testing done as NHS was useless, my BUN and albimum were normal.


Then I got the NHS test done on friday and my GFR was 74, The average GFR for my age group is 116, a GFR from 60-89 indicates kidney damage with mild loss of kidney function according to https://www.kidney.org/atoz/content/gfr. However the NHS normal ranges for GFR are 70< (higher than 70) all the NHS GP could say to me recently was we’ll test kidney function again in a months time but no suggestions to get Scans and further investigations done…. My GFR has steadily been dropping it was 89 a few months ago and 100 a year ago.


I eventually saw private GP to check for blood clots but they also said they thought I was fine, as I still had the pressure and soreness in my abdomen left over at that time and she didn’t want to do any scans or anything.


Urine strips at home showed my urine specific gravity was at highest value indicating electrolyte imbalance and dehydration, I told the NHS GP this he didn’t even know what urine gravity was even though its a measure on every standard urine analysis strip they use everyday…. I told the private GP this and she wasn’t interested as its “not something they look at”.


Aldosterone SERUM/PLASMA 632 pmol/l resting See below - At highest normal range

Reference range:
Resting < 640 pmol/l
Upright 61 - 970 pmol/l

HAEMATOLOGY

Haemoglobin 157 g/L (--*) (130 - 170)
Red blood cells 5.12 x 10^12/L (-*-) (4.5 - 5.5)
Haematocrit 0.453 L/L (-*-) (0.40 - 0.50)
MCV 88.6 fL (*--) (83 - 101)
MCH 30.6 pg (--*) (27 - 32)
MCHC 346 g/L (---)* (315 - 345)
RDW 10.7 % *(---) (10.9 - 15.7)

MCHC and RDW were just slightly outside the normal ranges unsure if it means anything or not, usually my Full blood count shows nothing but the standard NHS test also doesn’t include MCHC. Private GP said these results were fine when I showed her


Blood electrolytes were normal, although I wasn’t in distress at the time.


My lymphocytes dropped from 1.6 a few months ago to the lowest range value at 1.0 in this test, this makes me think this is all some immunological reaction happening with my blood vessels. They dropped the same like this when I had swollen arteries on my head too a few years ago. I also had high Anti nuclear antibodies in a test five years ago but never diagnosed with anything by rheumatologist , one of my phospholipid antibodies is slightly higher than the normal ranges.


A few days ago using nebula genomics I was in the 100th percentile meaning very high genetic deposition for Primary biliary cirrhosis, Venous thromboembolism (blood clots), Primary open-angle glaucoma, Apolipoprotein B level, Mosaic loss of chromosome Y.

“To determine whether your score is high or low, we compared it to the scores of 5,000 other Nebula Genomics users.We found that your polygenic score for venous thromboembolism is in the 100th percentile. This means that it is higher than the polygenic scores 100% of people”


There are two rare kidney syndromes I’ve seen online called Bartter syndrome and Gitelman syndrome. These syndromes impair the kidney's ability to reabsorb salt and cause imbalances in various electrolyte and fluid concentrations in the body. Not saying I have either of these but maybe something similar happened.

Here is a case showing a person with sjorjens developing Bartter syndrome

https://www.sjkdt.org/article.asp?i...=31;issue=5;spage=1144;epage=1147;aulast=Fraj
All of this persons kidneys tests and electrolytes were all normal until they did a Electromyography.


If my potassium and sodium is low in hair and sodium low in urine and my reactions to showers seemed to disappear when using potassium for the first few days but now potassium causes severe symptoms. This all makes me think there is some kind of Channelopathy.


Not sure what I should do now as all the serious symptoms have stopped, however I am getting discomfort/pain in upper right abdomen when eating meat, I am also now getting spasms in my whole abdomen frequently, when I have a shower now my whole abdomen bloats up which I never had before.

If anyone has any suggestions I would appreciate it, someone suggested to me it could be decreased blood flow to the kidney, I also got the impression there may have been a blockage or blood clot somewhere. I guess there is a possibility of kidney stones but I never had severe pain or pain when urinating. A scan four years ago said I had gallstones.

I am not sure where to go from here, all investigations will have to be done myself as the GPs seem incapable of helping me and investigating properly. I've attached of the full blood tests and pic of vein below. Vein is now normal now.

Thanks

 

[wabi-sabi]

1) Don't assume that pain in the area of your kidneys is your kidneys, especially in the context of normal test results.
2) A low GFR could just mean you're not taking in enough water and your kidneys are just fine.
3) Be very, very careful when messing around with potassium.

 

[chelsea49]

1) Don't assume that pain in the area of your kidneys is your kidneys, especially in the context of normal test results.
2) A low GFR could just mean you're not taking in enough water and your kidneys are just fine.
3) Be very, very careful when messing around with potassium.

Pain was on both sides under rib cages, the ache also moved to my flanks and back, kidneys deal with protein and potassium and both were triggering symptoms. I was drinking plenty of water and symptoms weren't improving. I also had weak urine flow after consuming protein and GFR wasn't this low in the past.

Kidneys are also responsible for body fluids and electrolyte balance, both seemed off so I'm pretty sure it was my kidneys.

I haven't taken potassium since the symptoms have ended.

74 GFR is not a normal result for my age group, this result was only shown in my NHS tests which I didn't attach.

 

[wabi-sabi]

If you have OI, like may of us do, then this could account for your fluids being off even if your kidneys are fine. If you supplement the wrong amounts of potassium or other electrolytes you can mess this up, even if your kidneys are fine.

I haven't taken potassium since the symptoms have ended.

Do you mean you started supplementing potassium, got symptoms and then stopped with the potassium and your symptoms went away? Of am I misunderstanding this?

 

[chelsea49]

Yeah I agree I didn't think its an organic problem in my kidneys like CKD, however I do think there was some electrolyte imbalance going on and my kidneys were involved, or maybe a blockage somewhere in the body affecting the kidneys.

Yes thats correct but after getting back my blood electrolytes , my potassium was at the low end of normal so I thought it would be ok to try a tiny dose of the potassium drops again but I found it definitely wasn't ok after that.

 

[wabi-sabi]

Urine strips at home showed my urine specific gravity was at highest value indicating electrolyte imbalance and dehydration,

This is consistent with a low GFR being due to dehydration too.

 

[chelsea49]

I do remember drinking more water seemed to worsen symptoms at times, I also tried salt water to try and rebalance electrolytes which was a bad idea and I felt even worse with pinching all over the body. Magnesium and calcium supplements seemed to not help the symptoms at all either.

 

[wabi-sabi]

I didn't think its an organic problem in my kidneys like CKD

I would agree with this too.

I would interpret all of this as your kidneys are fine, and you've messed up fluids and electrolytes with your supplementation regimen, combined with the OI issues of ME/CFS. It also sounds like you are in the midst of a horrible crash due to all of this.

electrolyte imbalance going on and my kidneys were involved

Well, yes, because your kidneys are trying to fix the problem, but as you said, they are not the problem.

my potassium was at the low end of normal so I thought it would be ok to try a tiny dose of the potassium drops again but I found it definitely wasn't ok after that.

Exactly! The low end of normal is still normal.
So maybe go for an ME/CFS doc's recommendation on fluids/electrolytes, like DR Cheney's homebrew and don't try to make up your own potassium regimen.

link here:https://www.healthrising.org/forums/resources/dr-cheneys-home-brew-to-increase-blood-volume.444/

 

[chelsea49]

I was on a recommended routine, I just made the mistake of adding my dads electrolyte powder on top of that which had way too much potassium that I didn't know about.

I've also had bad kidney pain with speech problems when trying Sam E before.

It seems now I am getting tons of spasms in my stomach even though the crisis ended a week ago, I'm also waking up with sore abdomen and I still can't tolerate protein. But yes now this new pain and symptoms doesn't seem to be near my kidneys.

 

[wabi-sabi]

It seems now I am getting tons of spasms in my stomach even though the crisis ended a week ago

Well, GI problems are sadly common in ME/CFS.

Any chance you can see a dietician?

 

[wabi-sabi]

I still can't tolerate protein

Do you mean you can't tolerate all protein or can't tolerate the red meat that you tried before?

 

[lenora]

Hello chelsea49.....At least you're staying off many of the things you were on....it's far easier to throw the body out of balance than we think.

Do you have a GP who could readily see you? I realize it's the NHS, but exceptions have to be made, don't they? At the very most right now, I would definitely keep yourself hydrated (but don't overdo it, please), and stop looking things up on the Internet. Sometimes too much knowledge is far worse than too little.

Try to get your mind under control. Soft music, engage in a TV show or movie if you can, preferably something like a light comedy...whatever calms you, use it. Forget about your body for a time....

How do I know? Because I've been in "that" place. Are you having regular BM's? If you are, then the likelihood of something like a blockage is a lot less and nothing you have to worry about. If, however, the abdominal pains are really bad and you aren't having regular BM's, then you have a decision to make.....the reason for a visit to your GP.

Are you living at home? If so, ask your mother or father to boil up some beef or chicken bones as a good broth for you. It's best as it contains protein and while it doesn't make much, it's much healthier than canned soups. If you're hungry, have soft veggies that are worth eating...not peas. Sweet potatoes would be good, things like that to build yourself back up.

Let me stress this, though: Make certain that you're seeing your doctor.

Leg cramps are common, especially if we spend a lot of time in bed. If the area isn't red and swollen then chances are it has nothing to do with a blood clot but something benign like Restless Leg Syndrome...which is hard to describe. I've had it for years, but it's under better control now.

If your GP can't find anything obvious and has checked your vital signs, I doubt that doctors at the ER will find anything either. Wishing you better times. Yours, Lenora.

 

[wabi-sabi]

@lenora
this is such wonderful advice. BOth logical and compassionate.

 

[chelsea49]

Do you mean you can't tolerate all protein or can't tolerate the red meat that you tried before?

Its all meat and fish but red meat is probably the worst I guess, UAA a month ago showed I have high levels of carnosine implying meat isn't getting digested properly.

 

[wabi-sabi]

implying meat isn't getting digested properly.

Well, no wonder you're having stomach pain!

This is really something that needs a healthcare person that specializes in GI stuff and a dietician to help you find out what to eat. Not something that the internet can help too much unfortunately. You'll just find loads of fad diets online.

 

[chelsea49]

Hello chelsea49.....At least you're staying off many of the things you were on....it's far easier to throw the body out of balance than we think.

Do you have a GP who could readily see you? I realize it's the NHS, but exceptions have to be made, don't they? At the very most right now, I would definitely keep yourself hydrated (but don't overdo it, please), and stop looking things up on the Internet. Sometimes too much knowledge is far worse than too little.

Try to get your mind under control. Soft music, engage in a TV show or movie if you can, preferably something like a light comedy...whatever calms you, use it. Forget about your body for a time....

How do I know? Because I've been in "that" place. Are you having regular BM's? If you are, then the likelihood of something like a blockage is a lot less and nothing you have to worry about. If, however, the abdominal pains are really bad and you aren't having regular BM's, then you have a decision to make.....the reason for a visit to your GP.

Are you living at home? If so, ask your mother or father to boil up some beef or chicken bones as a good broth for you. It's best as it contains protein and while it doesn't make much, it's much healthier than canned soups. If you're hungry, have soft veggies that are worth eating...not peas. Sweet potatoes would be good, things like that to build yourself back up.

Let me stress this, though: Make certain that you're seeing your doctor.

Leg cramps are common, especially if we spend a lot of time in bed. If the area isn't red and swollen then chances are it has nothing to do with a blood clot but something benign like Restless Leg Syndrome...which is hard to describe. I've had it for years, but it's under better control now.

If your GP can't find anything obvious and has checked your vital signs, I doubt that doctors at the ER will find anything either. Wishing you better times. Yours, Lenora.

Yes this was a week and a half ago so I'm mostly back to normal now, I spoke to NHS GPs on the phone they don't take me seriously and just try and rush you off the phone as quick as possible. They haven't really done any thorough testing, only thing they asked for was kidney function tests.

I told an NHS doctor I had taken recreational drugs a few times like weed, lsd, ketamine, mdma etc when they asked me, like most people in this country have. Well guess what they put on my file as key events : Drug Abuse.... So having drug abuse and medically unexplained symptoms as the main things on my medical record I can never get taken seriously by these doctors on the NHS which makes it impossible to make any progress. That was also six year ago when I had tried those drugs so completely irrelevant to anything thats happening now...

Both times I spoke to the GPs it was also when the kidney pain and symptoms had settled down. I saw a private GP in person but they didn't ask for any tests, I showed her the results of the tests I did myself privately but she had nothing to say however the private GP was much nicer than the NHS ones.

In the crisis period my bowel movements were regular and didn't seem to be effected, however the last few days I've been constipated which is very unusual for me.

I think I chose the wrong word I wasn't having cramps, I did have the calf pain but that seemed to be link to my veins and not muscles. Feet were hot, purple and rashy, when my heel hurt it seemed like there was too much fluid in my foot.

I was also just playing chess to try keep my mind off things but it wasn't helping the symptoms.

Personally I don't think the NHS GPs I've seen are qualified enough to diagnose anything even slightly unusual.

 

[lenora]

Hello @ chelsea49.....Have you been eating properly? Perhaps you're constipated b/c you haven't. I don't know, just making an educated guess here.

You were taking quite a few drugs. Unfortunately doing so can work against all of us. Even ones that aren't illegal, not that we should lie, but lsd for example can really mess with your mind (to say the least). I know it's being used for psychiatrist reasons today, but they're done under strict medical supervision in the presence of doctors.

I, myself, have been on opioids (fentanyl patch for years), and was fortunate enough to walk away without addiction problems. I've known others who aren't so fortunate, and others yet again who have horrid pain and can't get any proper relief b/c of govt. regulations. It's a difficult matter, but I wouldn't mess around with things like that are unnecessary. Consider yourself fortunate and perhaps you can eventually talk to a Dr. about having that event expunged from your medical history. I haven't dealt with this matter before, so have no knowledge of when enough time has passed.

Do you have a TV in your room? Somewhere you can play soft music? Look at youtube and find out about proper breathing. I suffer from severe chronic pain, have for years and these things have all helped at one time or another. I'm a reader, but I didn't suggest books to you because you didn't sound like you could get lost in one at this time. If I'm wrong, I apologize...read away.

Chess is good if it keeps your mind occupied. These are the things we look for and for each of us it seems to be something different. Do what you can to be happy....in a good, normal way. Even go for a walk if you can, visit with others....it's different for all of us and at different times in our lives.

I would really give the kidney problem a rest for now....just let it go. You have to in order to give your mind the chance to take over once again. Do what the doctor suggested...it's the same here. Go back in another month for a repeat test....if there's a problem it will show up then. Elevate you leg and see if the swelling decreases....perhaps it's a sprain of some sort or a medication you're on. I've had similar problems, and elevation will help. I don't know the cause of the rash....have you been scratching it? You're urinating, that's good, and perhaps this evening you'll have an even bigger flow. You may have too much salt in your system...too many fish and chips or something. There are so many hidden place for salt....things like ketchup, ice cream even, so don't worry and see what occurs.

Do you like jigsaw puzzles? You just want something to help you pass the time of day. Write a letter (or e-mail) to a friend, mess around with your computer...shop on the Internet....anything. Yours, Lenora.

 

[Zebra]

Personally I don't think the NHS GPs I've seen are qualified enough to diagnose anything even slightly unusual.

Hi, @chelsea49

First of all, I'm sorry this is happening to you.

I am currently working with my mom to get to the bottom of her kidney issues, and we keep getting tossed back and forth between her primary care physician and her cardiologist.

Neither seem to have any knowledge of kidney function beyond the GFR test and a urinalysis. It is frustrating to see my mom suffer due to their gap in knowledge, so what you said above resonated with me.

I'm trying to learn and understand the integral function of the kidneys and what tests we can order out of pocket. With that said, I don't have much to offer you in the way of help, but I did have one thought.

Have you had a simple, but thorough, urinalysis performed at a lab?

I ask because I wonder if your urine might contain elevated levels of protein. I know that this is just ONE of many potential indicators of primary kidney dysfunction, as opposed to secondary kidney dysfunction, but your reaction to animal protein made me wonder if there was a connection here.

Also, when my mom's kidney function is low/poor, she usually has either extremely low BP or very high BP and feels very, very unwell and exhausted. I wonder if you happened to check your BP during your rough patch?

I hope you are feeling somewhat better. I think it's difficult to "push back" on medical professionals when one isn't feeling well.

 

[chelsea49]

Hi, @chelsea49

First of all, I'm sorry this is happening to you.

I am currently working with my mom to get to the bottom of her kidney issues, and we keep getting tossed back and forth between her primary care physician and her cardiologist.

Neither seem to have any knowledge of kidney function beyond the GFR test and a urinalysis. It is frustrating to see my mom suffer due to their gap in knowledge, so what you said above resonated with me.

I'm trying to learn and understand the integral function of the kidneys and what tests we can order out of pocket. With that said, I don't have much to offer you in the way of help, but I did have one thought.

Have you had a simple, but thorough, urinalysis performed at a lab?

I ask because I wonder if your urine might contain elevated levels of protein. I know that this is just ONE of many potential indicators of primary kidney dysfunction, as opposed to secondary kidney dysfunction, but your reaction to animal protein made me wonder if there was a connection here.

Also, when my mom's kidney function is low/poor, she usually has either extremely low BP or very high BP and feels very, very unwell and exhausted. I wonder if you happened to check your BP during your rough patch?

I hope you are feeling somewhat better. I think it's difficult to "push back" on medical professionals when one isn't feeling well.

I think if you are able to you should maybe see a Nephrologist for your mum as they specialise in kidney issues, rather than those other doctors who don't know anything much about kidneys.

I haven't had a urinalysis performed at a lab, the doctors didn't offer one. I've only done the standard urinalysis dipsticks at home. Kidney or gallstones may be possible as I have had cloudy urine a few times but I haven't had any severe pain.

I had a steak with salt today for lunch and it caused me a lot of issues like feeling bad, unable to speak properly, red hands and feet, thicker veins on hands and feet. I will not eat meat again now... Even after taking a break from it I am still getting issues. However I am getting no kidney pain from the meat now.

I am getting tons of harmless spasms in my abdomen since the rough patch which I never had before that, I'm also waking up every morning now with a sore abdomen which I didn't have before either. Maybe this is a result of the body trauma from the rough patch.

I haven't been able to check my blood pressure but was thinking of buying a BP reader.

 

[lenora]

Hello.....Yes seeing your GP and getting a referral to a nephrologist sounds like a very good idea.

A lukewarm heating pad on your abdomen may help out with the pain. Just keep it lightly warmed and move it around....please don't burn yourself.

Why aren't you keeping a lighter diet these days? You can get good nourishment without something as heavy to digest as a steak. At least give it a try. Don't you at least like homemade custards, that type of thing? Scrambled eggs or am omelette w/o toast for a bit?

Sorry you aren't doing any better. Yours, Lenora.