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B12 deficiency mimicking MDS
4-months ago I went for a full blood workup, 1st one in 7-years. To my surprise my WBC was 1.6, Platelets 75, Hemoglobin level of 14.2 and neutrophils .8. Also, my B12 level was 153. I felt and still feel perfectly fine, no symptoms whatsoever.
My doctor sent me to a Hematologist who sent me for a BMB. Normal amount blast cells. As he put it funky looking white blood cells. He felt my B12 deficiency and chronic drinking could produce these levels and mimic MDS.
He put me on 8-weeks of weekly B12 injections which raised my B12 level to 560 and my WBC level up to 2.0. He then switched me to 6-weeks of B12 injections every other week. After 6-weeks my B12 level was back down to 289 and my WBC back down to 1.6.
Upon another BMB after 3-months little has changed. He decided to put me back on a weekly B12 injection schedule and will check my levels again in mid January 2026.
I've had two MMA tests both showing a normal reading of .24.
He says that depending on how long I've had my B12 deficiency along with alcohol abuse, could take up to a year to repair my bone marrow. But to also realize it might be MDS.
I stopped drinking alcohol on 07/07/25.
I'm 61 year old male. From what I've read MDS affects about 5 in 100,000 people, average age of 73. Out of this group roughly 90-95 percent are anemic with a low Hemoglobin level.
Can anyone relate to what I'm going through of give any insight as to what might be happening. Obviously, I am very concerned and upset.
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Hi how did you get on? I am in a very similar position awaiting more bone marrow results but B12 injections have improved my Haemoglobin levels a lot
Hi @chrissy2310 Welcome to Connect. Waiting for test results can be a cause for anxiety, right? I know the feeling. So to combat that, I generally look to distraction to keep my brain occupied. ☺️
While you’re waiting for a reply to your question, I gathered a list of other conversations with members who have also have Vitamin B-12 deficiency. Here is the link to those chats:
Search for Vitamin B-12 deficiency
https://connect.mayoclinic.org/search/
Since you had a bone marrow biopsy, is your doctor considering that you have a blood disorder?
Hi yes she said some results are consistent to those in MDS. I’m 53 and just feel so sad. Iv had some loading b12 injections and these have cleared most of my symptoms. My haemoglobin has risen to 128 ( I’m having another blood test today as that was last weeks reading) and numbness and cold in my extremities is more or less gone. I feel normal after being so unwell. I just don’t know if it was true MDS would I feel such rapid improvement. I get the rest of the results next week and I just wanted to know if anyone else had been misdiagnosed. Thank you so much for your reply xx
@chrissy2310
Hello, I recently was told from a genetic test from biopsy and after wbc and rbc lowered one month that it appears a 5% MDS problem! Oncologist told me just go live my life, it could be years. Of course , that disturb me. But then blood work went back to almost normal and another Oncologist told me I did not have MDS b/c my numbers would not rise back if so. I’m living a mystery about that.
Your post made me wonder if that was related just to a B12 deficiency. I have to give blood every 2 weeks b/c of hemochromatosis so maybe B12 was really the source of MDS diagnosis. My understanding to have MDS your numbers all will be low, white blood count, red blood count, hemoglobin etc. Hopefully all is well for you now! Wish you a healthy year. Thank you for post.
@blessedgrandma1 Hi thank you for your reply. My haemoglobin levels are now 132. I see my consultant next week for the last of the results of the bone marrow. My GP told me yesterday that there was a result on my medical records done on April 10th, I think it was called a intrinsic factor antibody test that had a comment on that said they need to do further test into pernicious anemia but don’t know anything about that it must have been done in hospital on the emergency same day ward. I am back to normal in every way, although I do get tired quickly but iv done nothing for nearly 3 months as ice cold extremities which stop me from walking properly, eating and I struggled to talk at times. My energy levels were on the floor. Iv had 2 blood transfusions in 3 month that were 3 weeks apart and didn’t help that much as only one bag each time but then I had loading doses of b12 and I’m now on them twice a week for a month whilst waiting for end results of bmb. I can walk drive, eat go up stairs I’m near normal apart from I have slight pins and needles in my hands and feet but that will be nerve damage. I hope all this is positive news but I still am worried about the results. Iv read that b12 wouldn’t raise my haemoglobin levels to the extent they have without me having a deficiency. I could possibly have both but don’t think I’d feel this well after being so unwell. Great news that you didn’t have MDS, how are you doing now x
Glad to hear your health has improved! I am doing great now! I’ve been in remission fr DbCL almost 2 years ..I had extremely high ferritin also (iron overload) and going every 2 weeks now to give blood. It’s getting down closer to normal . Life is good now. God got me through the storm ! I too am a blessed grandma !😊Grandchildren are the best medicine.
You mentioned anemia , during my lymphoma flare up I experienced anemia, also had to get blood infusions. My oncologist gave me steroids and heavy meds trying to bring up hemoglobin. Nothing really worked until I became ill and got so weak admitted to hospital. Long story short they found out lymphoma was driving the anemia and other problems. Had chemo for 6 months, did very well and cancer free. Praise God! Hang in there..rest on days need and enjoy those grandchildren.