Finding out whats wrong with me - Early CKD Support

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Finding out whats wrong with me

Kat421 profile image
13 Replies

Elevated anion Gap, GFR low 56, B12 elevated 1701, hemoglobin high, haematocrit high and MCH High. My doctor doesn't seem to think any of this is abnormal

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Kat421 profile image
Kat421
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13 Replies
orangecity41 profile image
orangecity41

I had similar situation and Doctor did not see anything abnormal. Good you are being pro-active on your blood work. (I got a new Doctor due to moving who diagnosed CKD.) Maybe get a second opinion?

Kat421 profile image
Kat421 in reply to orangecity41

Thank you for your reply yes I do have kidney cancer a 3 mil tumor. I am now doctoring at Mayo Clinic in Rochester Minnesota

orangecity41 profile image
orangecity41 in reply to Kat421

So sorry to hear that. Great you are getting good care.

RickHow profile image
RickHow

Well if the doctor seems it is not unusual, and you are still worried, then 2nd opinion is not a bad idea. My concern would be the gfr. Some of the things you describe can be affected by diet. But some certainly point to renal problems. Anion Gap, gfr especially. Although these too are changed by hydration and diet. If it were me I would wait for my next set of blood tests (if they were in the next 3 to 4 months). If the numbers get worse or even stay the same I would definitely see a doctor who at the minimum would do some additional testing (perhaps ultrasound, urine testing, more intense blood work). For example, they say "normal" gfr is above 60. But depending on age it certainly should be not even close to the 60. Yours is below. I am a little surprised the doctor does not find this to require further tests. If it is not important then why do they say normal is above 60? Perhaps 56 is normal for you. We do not see your previous blood tests, know your medications, age, other medical conditions. But your doctor does. So maybe this is why he is not concerned. But my theory always is this. They do blood test. They tell us what the normal ranges are. If something is not in the normal range, consistently, then how in the world can it be ignored. If we ignore bad result, then why test in the first place?

Kat421 profile image
Kat421 in reply to RickHow

New lab results Anion Gap it was 17 now its 5, GFR was 56 now it's 72, chloride it was 102 now it's 112, B12 was 1700 now it's 1,212... haematocrit was 48 now it's 46, hemoglobin was 15.5 now its 15.1

RickHow profile image
RickHow in reply to Kat421

You must be pleased with your numbers.

Kat421 profile image
Kat421 in reply to RickHow

Again the vitamin B12 is high the Anion Gap was high now it's real low I will find out on Monday when I see the doctor

RickHow profile image
RickHow in reply to Kat421

I think the gap is still within the normal range. I am not too familiar with high b12 levels. But from what I understand higher levels are not harmful. It is low levels that are. But again, I'm not sure what causes this.

Kat421 profile image
Kat421 in reply to RickHow

In November I had the flu and I was pretty sick. Kept getting sicker and by the time March came I was dehydrated vomiting constantly with diarrhea called an ambulance ER did a CAT scan of my abdomen I have a 3 cm kidney tumor. I am doctoring at Mayo clinic in Minnesota and I'm having my tumor Frozen. I just knew for the past several months that I was sick and no one would listen to me.

Kat421 profile image
Kat421 in reply to Kat421

I still have a high vitamin B12 level 1500

RickHow profile image
RickHow in reply to Kat421

Well I can relate to the tumor. In mid 2017 a tumor the same size as yours (just slightly smaller) was found on my kidney. Due to its location (center of kidney) a partial removal of the kidney was not possible. It had to be totally removed. I think it is great that you are taking the approach of freezing the tumor. The results compared to kidney removal seem to be almost identical regarding if the cancer will come back, etc. But the procedure is far, far, less invasive that removal without the long recovery period. I was told that with the removal there was only a 3% chance the cancer would return. Well it has and I am now stage 4 with kidney cancer in the bones. The thought is that during the kidney removal the cancer/tumor is disturbed, moved, and drops cells into the blood stream. Whereas freezing is "just" needle insertion and "kills" the tumor without the major disturbance. Best of luck always.

Kat421 profile image
Kat421 in reply to RickHow

I am so terribly sorry to hear about your cancer. That is exactly why I wanted Frozen because I've always had this theory that when you cut into cancer it's like the spores explode and settle someplace else

RickHow profile image
RickHow in reply to Kat421

You are exactly correct in your theory. The cancer ate two huge holes in my spine. It was about to collapse when it was discovered. All the months it had eaten away the bone, I felt no pain at all. They rushed me to surgery to where braces were installed where the bone was about to collapse. At that time they did a biopsy on the remaining bone where the cancer was. To prove it was kidney cancer that spread and not another type. Then I had to do radiation on that area for 10 days. Why? Exactly what your theory is. I questioned why radiation to the radiation oncologist. Since this cancer has no cure, radiation can't "kill" my other tumors, why do it? He said that any time an existing area/tumor of cancer is "disturbed" (the biopsy, touching that area with the braces) it "awakens" the cancer cells. It is like touching a cut or scab on your skin, and the body bleeds or forms new skin. So they want to immediately get these cells with radiation to keep them from spreading and before they start to grow. Once they start to grow radiation won't do much, but to catch them as they form, it works. So you are correct. Touching or disturbing the existing cancer doe increase the likelihood of it spreading.

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