Does anyone have macrocytic anemia?

Posted by katya12 (Greg) @katya12, Dec 25, 2023

I have been diagnosed with macrocytic anemia not caused by a vitamin B12 or Folate deficiency. My RBC and platelets are low, and my MCH and MPV are high. I have had many tests, and my doctor still doesn't know what is causing the macrocytic anemia.

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Lori, Volunteer Mentor | @loribmt | Dec 28, 2023

Hi @katya12. There are a number of members in Connect who also have been diagnosed with Macrocytic Anemia in quite a few different discussions so I’m not sure what the conditions are behind their cause for having the blood disorder.
If you’d like to read through some of the conversations type Macrocytic Anemia in the search bar and you see the threads listed.

I’m also posting a helpful link to information about Macrocytic anemia:
https://www.healthline.com/health/macrocytic-anemia
You mentioned having several tests run. Did these include a liver and/or thyroid panel? Are you on any treatments for the anemia?

katya12 (Greg) | @katya12 | Dec 28, 2023

In reply to @loribmt "Hi @katya12. There are a number of members in Connect who also have been diagnosed with..." + (show)

Thank you, Lori, for the information. I will look at the threads and the link you provided. My doctor has run a myriad of tests, and she still cannot determine the cause of my macrocytic anemia.

Lori, Volunteer Mentor | @loribmt | Dec 28, 2023

In reply to @katya12 "Thank you, Lori, for the information. I will look at the threads and the link you..." + (show)

As I found out from my own medical odyssey, our bodies/blood are incredibly complex. Finding answers to some of our health issues can be equally complex. Hopefully you find an answer soon. Are you working with a hematologist?

ckscoville | @ckscoville | Jan 1 7:31am

I am in the same situation as Greg above. No B12 or Folate deficiency, and same blood panel results. A hematologist at Mayo ordered a bone marrow biopsy, but that too revealed no reason for the anemia. So I'm left without any apparent answers and considerable fatigue.

katanaguy | @katanaguy | Aug 31 11:23pm

A combo of Blood Test & a Bone Marrow Test from Aug 27, 2024 revealed I have "Macrocytic Anemia and Absolute Monocytosis"...I also have a Blood Clot in my bone marrow. ...that's quite interesting. Both...confirmed by St.Louis University Hospital Lab and then by Mayo Clinic Lab

My "CBC Blood Test with Differential" was way whacky ....Hemoglobin and RBC counts...way low....MCV...MCH....way high. My Folate count is low....B12 level ...is OK

I had been taking Prednisone 50mg 1x a day for approx 6 weeks..
...and just in June & July 2024... I was on 100mg...2x a day of Doxycycline....which is a big...NO - NO for Macrocytic Anemia of which I did not know of at time & before last week's Blood Test & last week's Bone Marrow Test ....in fact Doxycycline...CAN CAUSE IT!!...So, I was just yesterday diagnosed from the Bone Marrow results ...Do not know what my Hematologist will do about this diagnosis till next Thursday Sept, 4th.
Good Luck to Everyone who has this disease...and it is treatable...DO NOT...let your doctors get lazy with you......you can HELP YOURSELF--you MUST be PROACTIVE with your own health!!!....-especially with ALL the types of Doctors...today...some have developed an "8 to 5" mentality & I have seen their "less caring" in their attitudes, myself. ALWAYS have a logical list of solid questions for your appts. You must take control of your own health--READ!!

katya12 (Greg) | @katya12 | Sep 1 3:45am

In reply to @katanaguy "A combo of Blood Test & a Bone Marrow Test from Aug 27, 2024 revealed I..." + (show)

I have it, too, but my doctor isn't doing anything about it. They only know that it's not a vitamin deficiency. I was sent to a nephrologist because I have had blood in my urine for several years, but they still haven't found the cause.

screenwriter | @screenwriter | Dec 6 7:51pm

How is your energy level? Bone crushing exhaustion? That's what I had for 11 years - I was on the verge of going on disability with my macrocytic anemia. I too had been told it wasn't B12 deficiency - but they were wrong. My B12 levels were "normal" (right at 200). Mayo Clinic has a really low normal range which starts at 180 (which is WAY too low). In late June of this year (2024) I requested my B12 tested and it was still just at 200. I took sublingual B12 (both liquid and pill) for 3 months and was retested - still at 200. So my Heme/Onc ordered a B12 injection. I slept over 12 hours after the injection and I woke up to an entirely new world. I've been on the shots since September and my life has changed completely. I can walk up 5 flights of stairs now when it was a struggle to do just one. There is 5-10% of the population that can have normal B12 and Folate levels and still be deficient - due to the B12 not being bioavailable. In some people, as much as 90% of B12 can be unavailable for the body to use. That means if you have a B12 of 200 - only 20 is available for your body to use.
Take a B12 injection and see what happens for you - if it is what you need, you'll feel it and no harm if it isn't what you need. You can go through your doctor or you can go to a "B12 store" - they are popping up all over the place (easy to google). You can even order B12 online through the pernicious anemia dot org website and give yourself an injection. I hope this works for you as it did for me.

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