Should i get a kidney biopsy ? - Early CKD Support

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Should i get a kidney biopsy ?

boon1 profile image
11 Replies

One year ago, My egfr was 72 and 24 hrs urine protein was 395mg. I had difficulty breathing (Electrolytes normal ,kidney US,thyroid,abdomen US,LFT,heart and lung tests were normal).I am in my 20s. I do have hypertension and I was told I have CKD .Now my egfr is 99 and 24hrs protein is 25 mg. But my hands and face edema is still increasing .My hands edema is increasing almost everyday. My hand looks really weird now.I still have difficulty breathing. My doctor says eat less salt and no further testing is required. What should I do ? Should I ask for a biopsy? Anyone here been in same situation as me?

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boon1
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11 Replies
BarronS profile image
BarronS

What heart tests did they run on you?

boon1 profile image
boon1 in reply toBarronS

ECG, lipid profile , ultrasound

Woven profile image
Woven

Why do you think your symptoms is from kidney disease or issues? I don’t see any labs or xrays that point to that as the cause..

boon1 profile image
boon1 in reply toWoven

The doctors say so and my symptoms seem consistent with kidney disease. Urine protein was 400 mg and I have edema. I also have a white band running longitudinally across my nails. Though my serum albumin is 3.8

RickHow profile image
RickHow

I have read your original post and your replies to others and must say I find it confusing. Your latest egfr and 24 hour urine numbers are normal. Your doctor says you are fine and no further testing is necessary. However you point out certain things (for example edema) that concern you, even the color of your nails. And these things have you convinced there is something wrong with your kidney. However you further say they did 24 hour urine, lipid, ecg, ultrasound, and find nothing. I am sure you have pointed out to your doctor the things that still concern you, such as your nails. Apparently he/she finds nothing to be concerned about. Approach your doctor and ask him more specifically to explain to you why you have these things that concern you, yet he says nothing is wrong. If you do not get a clear understanding, they try for a 2nd opinion. However, your main question is should you have a biopsy. Well this is not just something that you as a patient can schedule and get. You would have to request it from your doctor. And it seems your doctor finds nothing wrong so is unlikely to order such an extreme measure without justification. Here is a link explaining edema. As you read it you will see that it can be caused by many, many, many different things. NOT just a kidney problem. Such as medications, too much salt, heart problems, pulmonary problems, lack of any exercise, etc.

boon1 profile image
boon1 in reply toRickHow

Thanks for taking the time to reply. Sorry I should have been clearer. I am having my urine and blood samples tested after every few months. I should have written 395 instead of 400 for protein. Serum creatinine was 1.35 (=72 egfr). I had bunch of other symptoms too. Nausea,puffy eyes,but no hand edema. This was all during my second round of testing. My first round of testing was only spot urine and it was normal. My third and latest round of tests has egfr 99 and 24hrs protein 25mg. My nausea has stopped completely ,I don't feel tired, but my breathing difficulty persists and I have developed hand and facial edema. This is already my 3rd opinion .I don't know what to do now. I now control my high bp using nebivlol and ARB+water pill. I have also done thyroid test and abdomen ultrasound last year both were normal. I cannot see the link you have provided .Could you repost it again?

Bassetmommer profile image
Bassetmommer

HI Boon,

You say you are in your 20'a and have hypertension. I would focus on what is causing that, especially since your kidney tests are all normal. Edema can be many things and the fact that your say you have high blood pressure would indicate something other than kidney issues is causing it.

What do you think is high BP? Do you have edema in your legs as wells as your hands? Did they check your circulation? What type of medications are you on? Could your BP meds be causing the edema?

Kidney tests are pretty factually. If the GFR and creatinine are off, then I would be concerned but your tests are not.

boon1 profile image
boon1

Thank you for taking time to reply. My abpm last year had mean of 140/90 . Now my abpm has mean of 121/80. I use 5mg nebivlol and a 40mg combination ARB +water pill. My legs donot have edema but I am afraid at this rate it is only a matter of months before legs are affected too. My doc says it is not the pills that's causing edema. Which tests need to be done to check my circulation?

Zazzel profile image
Zazzel

To specifically answer your question as to should you have a kidney biopsy, you would need to look into the risks vs the outcome. Although it is relatively safe, there is always a risk of internal bleeding with a biopsy, so no respected doctor would order one nor would insurance pay for one unless all symptoms pointed to needing it which in your case it doesn’t at this time. For this procedure, you are put to sleep then an incision is made and a scope goes in and takes a small piece of your kidney to examine. I did have it done, as I had 4 times the amount of protein you did with much lower GFR. I would not do it again unless absolutely necessary.

You said you have spoken to 3 doctors. Have you ever seen a holistic or integrative doctor? Sounds like it could possibly be an allergic or histamine reaction. You may have autoimmune issues. Did they test ANA for autoimmune? I get similar symptoms as well as many others when I eat foods I’m intolerant to. But, Bassetmommer thought on BP medication sound like a really good possibility as well. Keep pushing until you get it figured out. It took many years and lots of doctors and tests until I found out food intolerances were causing many of my issues. I still get concerned when I have breathing issues, swelling and nausea because I’m still learning that certain combinations of foods or time of year while eating certain foods cause reactions.

boon1 profile image
boon1 in reply toZazzel

Thanks for taking the time to reply. I have done ANA blot for 17 antigens . All were negative. My current doctor too believes that my breathing difficulty is because of allergy in food. I have not been to a hollistic doctor I will keep that in mind now and pay him a visit. Thanks

Zazzel profile image
Zazzel in reply toboon1

Something that a lot of doctors are unaware of are oral food allergy syndrome. So, if you happen to have a grass, tree, pollen, ragweed allergy or intolerance (intolerances won't show up on an allergy test) then the times of the year when they are most prevalent, you might have a reaction to certain foods that would normally not give you any issues. The foods are in the same family as the offending factor. If you google oral food allergy syndrome you can see charts for all the cross food reactors. For instance, I have a very slight ragweed allergy. During ragweed season, zucchini and cucumbers give me reactions. The rest of the year I have not problems eating them. This year was particularly bad for me as I started eating more vegetables. The combination of eating multiple foods within the same family gave me lots of breathing and stomach issues. It's confusing because I forget since 9 months go by with no problems and sometimes I can eat one of the foods alone or cooked and no problems, but when I eat multiple or raw I have issues. A complicated equation to say the least. And, no doctors pointed this out, but after figuring it out on my own, I found a DO who confirms my findings as his wife has similar issues.

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