I had my hema appt. today, but saw my nurse practioner instead of my hema. I asked her about the updated B12 accepted values, and she said she didn't know, but that she would find out. She did say, though, that she personally sees lots of patients who are very symptomatic in the 400's to 600's. She said it really varies from person to person.

Next time I go in, they're going to test my B12 levels. She said they haven't been checking them, because they just know I need them and continue to give them to me. Which is good that they will continue them, but still it will be good to know.

My counts were down today - my hemoglobin went from 12.8 to 11.7 in a month, and my RBC was 3.79. 11.7 is fine if that's where it stays - it's just with me, I have hemolytic anemia, so any downtrend is concerning. For the past three months my hemoglobin has been around 12.8 to 13, which is really great. I'm hoping it's not the beginning of my hemolytic anemia rearing its ugly head.

I got a B12 shot today, though, and that should help things.

I'll let you guys know what I find out about the new levels.

Jill

Thank you so much, Jill. I will be waiting for the next post on the numbers. I am taking sublingual B12 myself as my number was 324 (211-911) and as much as I try to insist that this must be contributing to my symptoms, my doctor this week again has said that the number looks good! I am still researching but have not found anything yet! Hoppy:confused:

I would love to know if they change the b12 #'s My b12 was 286 and I feel awful. My Dr. feels I am fine and I know I am not .../I started my own b12 sublingual and hope it will make a difference. I am not anemic just feel terrible. I went to a rheumy today for aches in joints and he feels I am ok. No RA. He did order more blood work. I asked about and b12 and he said I was fine and that didn't cause my aches and pains and I am not too sure about that.:) I think it is a low b12. If all ok at rhuemy I am going to demand b12 shots.

Well, I can tell you both that when my number was 300's, I had tons of symptoms. I had the aching joints, the tingling, the muscle jerks. Until you can keep a count over 800, you still need to be doing sublingual and shots. From what I've researched, you need a higher level when you've been deficient because your body needs alot to do the repairs it needs. And you need to stay at a higher level so your stores build up as well.

I also had tons of tests for RA. They were so certain that was it. But my tests keep coming back negative. So we're just continuing with the shots and supplements and hoping that helps. It has helped, but I still think I'm low.

I think many drs don't realize that once you're symptomatic, it takes a long time to recover. You can't just get to some magic number, because it's different for everyone. You have to manage to the symptoms. I get frustrated with drs, too, because B12 is such a simple treatment! It's not like you're begging for antibiotics constantly to cure something. It can't hurt you, it can only help you.



Jill