ITP, High MCV, High B12 and High on binding

Hi all,

I guess i would catagorize myself as having more acute ITP because my platelets decrease when i have a cold/flu or something like that. I have had 2 bouts of ITP in the past 8 months which is rare for me but it was due to 2 very bad colds. What is concerning me now is that my hematologist wants to perform a bone marrow test and i was diagnosed with ITP in 2001 and nobody has ever thought it to be necessary. So the reason for this now is because since 2006 (since becoming a vegetarian) my MCV has fluctuated b/w 100 and 104. My B12 counts are high and it also looks like I may not be binding B12 well because that test was high too. I am being told that i am not anemic however i question this. I am very scared because i go online and there seems to be a lot of links to leukemia. I defintiely have a tendency to feel tired, some occasional dizziness and GI issues at times however I am 31 yrs old and extremely active. I do have occasional shortness of breath and on and off depression/anxiety. i am driving myself crazy because I keep going online and its scaring me even more. I am getting other opinions about my condition but i really would appreciate some feedback on this. Thank you so much for the support.

Ok I just wrote you a book and deleted it by accident! OOPSS!! but here is my advice in a nutshell: Have the biopsy so you can move on.
I too am a nervous type and a bit of a hyperchondriac at times (I drive my family and husband nuts!). My hema suggested a bone marrow biopsy as well, which sent me into a complete spiral. I convinced myself that I had leukemia(thanks internet!)- although in the back of my mind I knew I didn't. I didn't want to go through with the biopsy, but knew that was the only way I would get peace of mind and be able to go back to living my normal life without being crippled by worry. I just got my results which were completely fine!! The sense of relief you will get is incredible. The procedure itself is no picnic, I won't lie to you...but it is very quick-I was in and out in under an hour with the actual procedure lasting about 5-10 minutes. I was sore for about 2 days after but nothing alittle tylenol couldnt fix.
Make sure you keep us posted....stay positive! Trust me, I know it's tough and it consumes your every thought, but everything will work out...sooooooo many benign things can effect your levels/counts!! don't let the "what ifs" drive you nuts

haha! i am such a hypochondriac but i guess thats what an autoimmune disease does to you! Thanks so much for your words of encouragment. I was on this group a long time ago and it really helps to know youre not the only one dealing with these things. Right now I have it scheduled for April 22nd but I might actually get another doc to do it, going for another opinion in the next couple of weeks. Did you get anesthesia during the procedure? I heard its really painful. im so happy to hear that all is ok with you!!!

Staci

He did mine right in the office with just local anesthesia @ the site. Apparently, I have bones of steel because he didn't get a sample the first time and had to do it again. Just have somewhere there with you to hold your hand and it will be over before you know it! I actually took xanax before my appt because I was an absolute basketcase and I think that helped to calm my nerves considerably so you might want to look into asking your doctor for something like that. Trust me, the peace of mind you will get afterward will far outweight anything you endure during the procedure. You will do just fine and don't be afraid to speak up. I felt some pain when he started the procedure and once I told him- he stopped and numbed me alittle more. :lol:

Hi Staci - I agree, just do the BMB so you can stop worrying. If there are odd things showing up in blood work, it is probably justified.

It's not that bad. Twenty minutes, over and done. I didn't have any anesthesia, just a few numbing shots. Waiting for the results is worse than the procedure.

I know. I will do the BMB. Im just scared i have leukemia.

You're talking yourself into that. Fear is feeding you. Even if you did, it's possible it could be treated successfully. If you are extremely active as you say, you don't seem like a person who has leukemia!

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

(Frank Herbert, Dune)

I actually find this a bit helpful even though it's from a science fiction novel.
Erica

Hi,

Just wanted to give you some potential insight into the MCV and B12 issues. Things you can look up and study that might make you feel better. My DS ran high MCV with his ITP when his counts were very low. Even has his body healed it took quite some time for his MCV to come back into normal ranges. When one blood count is off (ie platlets), it really does affect others as well. Some people find their white cell counts go up, some people they go down, etc. My DS had his red cell count go up as his bone marrow started kicking out more platelets because it was also kicking out more reds and whites. Eventually he leveled out. It's possible that as your bone marrow is trying to right itself that this is just a blip.

Second, one of the biggest health issues with being vegetarian is B12 absorbability AND/OR not having enough B12. You might find that just adding some meat to your diet will fix your ability to absorb. It's possible to have enough of any vitamin/mineral but the body not be able to absorb it. Do some research on B12 and vegetarianism and see what you come up with. It's a VERY common problem. And usually fixable with some diet changes (in your case that seems likely since meat/B12 are closely related). That's not true of all absorption issues, but it can be with the B's. It would also explain why you're tired. With not enough absorption you would be tired. Our bodies need it for cellular function and energy.

Hopefully, the BMB will give you peace of mind instead.

I use nutritional yeast as a B12 supplement and I also think it is delicious. I top salads and pasta with it and make a non-dairy cheesy sauce from it.
Erica

Thank you to all of you for the encouragement and support!! I did eat a sirloin steak lastnight so i am hoping adding meat will help this too!!!!

Thank you so much for this information. This makes a lot of sense.

eklein wrote: I use nutritional yeast as a B12 supplement and I also think it is delicious. I top salads and pasta with it and make a non-dairy cheesy sauce from it.
Erica

Someone just told me about this for a cheese sauce. I'm thinking I may have to try homemade mac and cheese with it!!

I had a bone marrow biopsy and my procedure took 45 mins, had two doses of Demeral and ativan. It was the most painful thing I remember. I cried during the wholt thing and will never have one again unless I am knocked out. Not meaning to scare anyone but that was my experience.