Undiagnosed kidney struggles: Hi! I’m 2... - Kidney Disease

Kidney Disease

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Undiagnosed kidney struggles

20 Replies

Hi! I’m 25/ female and I have a few doctors right now putting their heads together to figure out what’s going on with my body. I have a few more tests to take and waiting on some results. Summary: I’m having protein and blood show up in my urine (with the dipstick test) at every dr appt. sometimes ketones too although I’m not diabetic/doing “Keto”/OR starving.... I was told from a recent blood draw that my bun/creatinine ratio was elevated. Kidney ultrasound came back normal. They’re send me for 24 hr urine and more labs. I have chest pain, blood pressure spikes (normally low-ish blood pressure), puffy face/abdomen, short of breath, frequent urination at night, severe dry eye, freezing hands and feet, muscle twitching and pain, major fatigue, and headaches every day. They keep checking me for lupus it comes back neg every time.

Anyway getting to my question, now I’m noticing this pattern where if I have chicken, peanut butter, salty food, or protein shakes I have PAIN in my kidneys. It is almost immediate after I eat the food. I recognize the pain since I have had issues with kidney infections and stones in the past (I have been told now that I’m not showing any signs of stones or infection). So my question is, does anyone else with kidney difficulties feel actual pain with certain foods or beverages?

Thank you for reading and sharing experiences!

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20 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

HI em,

Pain in the kidneys can be many things. Can it be a reaction to food? Absolutely. Certain foods might trigger inflammation and hence the pain. The pain might not be actually in the kidney though, as it might be elsewhere such as the gallbladder. So do tell your doctor about it.

Bottom line...stop eating those foods. You do not tolerate them. Salty food is not good for CKD for anyone. Making lifestyle changes is hard but so worth it.

medicalnewstoday.com/articl...

kidneyfund.org/kidney-disea...

in reply to Bassetmommer

Thank you for the reply! All helpful info :)

steve680 profile image
steve680

I've never had food cause pain in my kidneys, but sometimes I have pain in my kidneys after sleeping all night (perhaps the kidneys do extra work at night). And sometimes long walks causes pain in my kidneys. Perhaps the increased circulation does this. I'm stage 5, BTW. I would ask your doctor if perhaps you have food allergies. A food allergy doesn't necessarily send one to the ER, as an allergy could just be a mild sensitivity to a certain food. Until you get things figured out better, I would stop eating those foods which are causing you a negative reaction. An allergy could cause your kidneys to be inflamed too; kidneys are very sensitive to the food and beverages you put in your body since the metabolic wastes in your blood are filtered out by them (or should be). Hope you feel better.

Momofson profile image
Momofson

While they are doing a 24 hour urine, have them check for iodine to make sure you have enough. The 24 hour urine is the best way to check that.

With the severe dry eye, they should be checking you for Sjögrens, but dry eye could be hypothyroidism too. Because of the very cold hands and feet, the dry skin, and low blood pressure, they definitely should be checking you for hypothyroidism, and that includes checking your antibodies (TPO and TG) against the thyroid for Hashimotos thyroid. Also, many people ( but not all) with hypothyroidism have very little eyebrow hair or almost no eyebrow hair on the outer 3rd of their brows. Both problems can involve the kidneys. The kidneys and thyroid often react to each other when one is giving you trouble and one autoimmune disease often leads to another so have the doctor check for both of those. The puffy face probably has to do with losing protein but could also be caused by the low thyroid because it can cause fluid retention.

You really have to advocate for yourself and ask for different tests, because many doctors only look at the one area you are complaining about and they go for the obvious. They also many times do not keep up with the latest studies and new things are being learned every day! Let us know how you are doing.

dreamwalker1016 profile image
dreamwalker1016 in reply to Momofson

you get the same thing with hyperactive thyroid or graves disease but want to eat constantly and unbearable abdominal pains, weight loss, swelling, and your hair falling out.

horsie63 profile image
horsie63 in reply to dreamwalker1016

Yes, that is how I found out I had Graves. I dropped too much weight that I couldn't afford to in a month. Doc suggested hyperthyroidism and a TSH test confirmed so off to a rheumatologist who diagnosed Graves Disease. That was 2014 and that's when I found I had CKD also. My Graves is in remission but my eGFR keeps dropping and is now at 22%

itzmich profile image
itzmich

So sorry you are going through all that. Hope they find a solution soon. Thinking of you and sending prayers your way.

Thank you all so much wow this is all so helpful. It can be really confusing trying to make heads or tails of all of this.... I really appreciate everyone’s insight.

And Momofson that’s so interesting that you said that, they are checking me for hashimotos as well! My cousin has it. I guess I’ll have a clearer picture when my labs come back

Momofson profile image
Momofson in reply to

Very important to remember that on the thyroid labs...TSH should never be above a 2.5 if you have thyroid symptoms or first degree relatives with thyroid problems. The lab reference ranges and most doctors dont know that. They will let you go to a 5.5 and call you healthy. Years ago, the American Endocrinologist Society lowered the values and for some reason, many doctors are still not aware of it. So look it up and take a copy with you. I've had to do that many times.

A very good information site online is called "Stop the Thyroid Madness" Tons of the newest info on that site and it's been around for years.

thescull profile image
thescull in reply to Momofson

Awesome insight!

I found this forum by searching " "kidney pain" despite negative urine test -women

-woman"

In reading the question of this 25 year old, I starting to think that maybe she too has hashimotos.

Along with my back paid/kidney pain and other, an additional symptom of swollen lower calves showed up after running. but once again, they do their blood test and find nothing. There are other of course like some signs of arthritis in the knees. However, there is still head scratching as to what all of these small seemingly unconnected symptoms add to. what are they the beginning signs of? can be frustrating, especially in the land of waiting 3 months to see specialist.

Where did you come by this information; what's you education level; do you have thyroid problems?

Thank you,

CodaD profile image
CodaD

Make sure your meeting with a nephrologist specifically! You may be, just want to make sure. ;) I didn’t have any symptoms... just found protein in urine. Because I had no known cause (I’ve been tested for everything) I was sent for a kidney biopsy, which immediately explained what was going on. May be worth the ask. I’ve also heard that some thyroid issues can contribute to the symptoms you’ve mentioned. There are tests for that too. I do remember something about T3 for that. Some docs apparently do certain testing for thryroid, but not the T3 thing. I can’t recall exactly what that was.

Best of luck figuring out your mystery!! And, wishing you better health.

Momofson profile image
Momofson in reply to CodaD

What did the biopsy show to explain the protein loss?

CodaD profile image
CodaD in reply to Momofson

Membranous nephritis was the diagnosis. It falls under the nephrotic "umbrella" of kidney diseases.

WYOAnne profile image
WYOAnneNKF Ambassador

Just one person's opinion.....I have always been told by my nephrologist that the kidneys by themselves do not cause pain. Pain in the kidney area can be flank pain, sore muscles, or you can have a blockage in your kidney, or even a narrowing in a blood vessel in kidney or you have an infection. you my also be having an issue with your gallbladder if having problems after eating certain foods

Please realize that we are not medical professionals and can only speak from our own experiences. You really should be going through all of this with your doctor so he can put it all together. Your doctor is there for you and should be helping you to understand what is going on.

Best of luck

I am 19 years post transplant!

thescull profile image
thescull in reply to WYOAnne

awesome information. thank you.

Lianelady profile image
Lianelady

I have pain in kidneys after eating food high in protein. Alot of your symptoms are similar to mine. I have hashimotos . Ask Dr to test for a thyroid antibodies blood test. Ask Dr for kidney biopsy. My biopsy showed Fibrillary glomerulonephritis. Which is auto immune kidney disease.

in reply to Lianelady

It seemed like protein was doing it... only certain types of protein like meat and nuts. I try not to speculate too much but it’s a pretty predictable outcome when I eat those foods. Thank you! They are checking for hashimotos, my cousin has it. Best of luck to you.

AusTex77 profile image
AusTex77

I agree with the others that say you need a kidney biopsy. And agree About changing diet.

dreamwalker1016 profile image
dreamwalker1016

Get an abdominal CT scan to have them check for horseshoe kidney or one of the other types of malformations, it can cause all of the problems you listed and you will feel like you are having appendicitis at random times that will suddenly clear up, look 8 months pregnant for no reason, spikes in BP, etc. . .

dreamwalker1016 profile image
dreamwalker1016

I don't know about anyone else but my kidney does not feel pain, but when it gets severe I get back pain. Possibly have them check your gallbladder. Mine had died and when I ate certain foods it was extremely painful for a year or two before they diagnosed and removed it.

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