Mayo Clinic Connect
I was just diagnosed with stage 3B kidney disease about two weeks ago. My GFR number is 28. Everything I’ve read has my numbers in the stage 4 category. Should I get a second opinion and should I be looking for a nutritionist to help with my diet?
@sheeb My gfr has been down in the 30s and 40s, but now has jumped back up into the 60s. This is not a good sign. Rather, it is evidence of progressing amyloidosis, and worsening of disease. I don’t know if a nutritionist will help, but they might. Have you had your SERUM FreeLightChain tested, and the 24-hr urinary protein measured? If your Serum (not your plasma) FreeLight Chain is above about 1.4 mg/dL, you have your culprit. Same with a urinary protein above 0.5 Gram per 24-hr. Read the Red Light Warnings on Amyloidosis on ALNYLAM.com, and view the videos on Amyloidosis on Mayoclinic.org, and Amyloidosis.org. There is only a small chance this is your problem, but because it is always fatal if not treated properly, it is worth checking it out.
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I met with a nephrologist and he took Blood samples. My creatinine level is at 2.05. Up from 1.86 last March. He took a urine sample at that time but I do not have results. The nephrologist never gave me a “stage” before. When I heard stage 3B I froze and heard nothing he said after that.
@sheeb. That Creatinine level growing that way is enough to check mis-folded protein in the serum and urine. If the nephrologist will not order the sFLC and 24-hr tests, find a hematologist with some experience with protein disorders, as with Mayo, Stanford, Mass General, Sloan-Kettering.
I can only imagine how worried you must be! We are so glad you’ve joined Mayo Clinic Connect – Welcome!
I’d like to start by introducing you to Mentors @rosemarya @predictable, and fellow members @fauneconner @lcamino @jjwest @ryman @lindaw @riveroaksfarm @deanna21239 @pkindron, who know quite a bit about bladder and kidney issues from their own experiences.
You may also be interested in reading or taking part in these past discussions:
– Stage 3 CKD https://connect.mayoclinic.org/discussion/stage-3-ckd/
– Possible low kidney function https://connect.mayoclinic.org/discussion/possible-low-kidney-function/
– Diminished kidney function http://mayocl.in/2l9m1P9
For your convenience, I’ve also copied this information from Mayo Clinic , specifically about GFR:
There are five stages of kidney disease. The glomerular filtration rate (GFR) measures how much blood the kidneys filter each minute, recorded as milliliters per minute (mL/min). As the GFR declines, so does your kidney function.
End-stage renal disease usually occurs when kidney function is less than 10 percent of normal. As a part of kidney disease staging, your doctor also may test whether protein is present in your urine.
Stage 1 GFR 90 or above = Normal or near-normal kidney function
Stage 2 GFR 60 to 89 = Mild loss of kidney function
Stage 3a GFR 45 to 59 = Mild to moderate loss of kidney function
Stage 3b GFR 30 to 44 = Moderate to severe loss of kidney function
Stage 4 GFR 15 to 29 = Severe loss of kidney function
Stage 5 GFR Less than 15 = Kidney failure
If you wish to get a second opinion from Mayo Clinic, please call one of our appointment offices. You can also request an appointment online.
The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
We look forward to getting to know you, @sheeb. What symptoms did you have? Do you have to make significant changes to your diet?
Yes. I am very worried. I don’t know all the terminology yet but I’m learning. I was on lithium for several years and my foctor believes
That’s what it’s from. He will be checking my urine again in March.
I see that my gfr is at 28 and 3B is supposed to be around 34. That makes me nervous as well. Does the gfr number ever go back up?
@sheeb Yes, the GFR can go back up, but that is not always a good sign. In fact, it can be a strong danger signal. It can show progression in certain diseases such as amyloidosis. And a high GFR is pointless if it only shows that the kidneys are removing urine, and not the protein pieces in the serum or plasma. So its a mixed bag.
@sheeb – I have PKD and my GFR fluctuates which is why it is technically called an eGFR (estimated GFR). Your GFR is calculated using your serum creatinine and it is my understanding that the rate at which your GFR fluctuates is related to the type of kidney diagnosis you have. With PKD a person’s GFR tends to decrease in a rather steady and predicable rate but that is not the case with other diseases. For me, my GFR can go up or down 2 points from month to month but that is mostly because the GFR measurement is not exact. Many medicines have the capability of harming kidneys since most medicines are processed through the kidneys but usually a doctor tests kidney function regularly if that is a risk with a medicine someone takes consistently. I have heard of kidney function recovering once a medicine is stopped but I don’t know how often that happens or how long it takes for the kidney to recover. I would encourage you to ask your doctor more questions as he/she knows the details of your health.
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Thank you for this information. I will talk to my dr.
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@sheeb, Welcome to Mayo Connect. I am happy to see that you have already received some good replies. I think that your decision to talk to your doctor is a good idea. Rosemary
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