I have severe anemia and...

SteveSierra · January 4, 2002

Hey all,

I'm getting to wits end here. Back on December 6th, I had some blood work done because I was feeling abnormally tired all the time. Turns out, my hemaglobin level was 6.6 and RBC's were 2.4. Normally, hemaglobin is around 14.5 for me. I've been seeing a hematologist for the last 3 1/2 weeks, had a hip bone biopsy done, multiple blood tests(everything from B12 to HIV), CT scan, etc.

No one knows why my RBC and hemaglobin is down and staying down(last test yesterday, still 6.6 before I was given 2 pints of blood).

So far, all the tests I've had done have come back negative(which is good) but no doctor is able to figure out what is causing my RBC's not to grow. They apparently stay in the precursor stage in my marrow but that's it, they don't mature like normal.

My biopsy was sent to Johns Hopkins and they've never seen it. Supposedly they are going to send it to that Naval Hospital in Bethesda MD.

Sorry for the long post, I was just curious if anyone else had this problem or knew of anyone that does. It's frustrating as all heck to be sick and some of the supposedly best doctors are sitting there scratching their heads as to what's causing it. Makes me feel like I'm the only one in the whole world with this. How special. NOT!

Thanks,

Steve

chevy4x4trucks · January 4, 2002

Steve,

Sorry to hear about your troubles. I know that all of us here are hoping that they can find out what's wrong and find a solution to it quickly. It sucks to have something wrong w/ you and not know what it is. I hope you get better soon.

pacodiablo · January 4, 2002

i dunno whats goin on wit ur blood, but i sure hope u find out what it is. someones gotta know what it is.

siume99 · January 4, 2002

I'm also sorry to hear about your problem. I had a friend that wasn't feeling like himself (tired all the time and lost motivation to do things). It turned out that he has an iron deficiency problem. I'm sure all the doctors had ruled that out with at least one of their tests, but its what comes first to my mind. He's fine now. I think he takes vitamins.

Have you tried searching on the internet for your symptoms and researched as much as you can about hemoglobin? I know I hear news specials every once in a while where the patient did A LOT of research and finally found a doctor with a theory and a cure.

Best of luck to you! Keep a positive outlook on everything. The mind is more powerful than man realizes. I know from running a marathon that it will keep you going even when the body says no.

SteveSierra · January 4, 2002

Thanks guys. Yeah, they ruled out the iron deficiency. It really blows cause they've ruled out basically everything, major anyway(cancer, Hep, HIV<---don't know where I would have got that, but it's good I don't have it anyway), but they just don't know what is causing it.

I've searched the internet a lot lately, and nothing comes up with what's going on with me. I mean, there are a lot of causes for anemia but nothing really matches. There's lupus, lukemia, etc. But they all have other things going on that aren't showing up in the tests I've had.

Thanks again.

If anyone else has any suggestions or anything at all, I'm all ears. I'll ask the doctor about anything. I don't care how far fetched it seems.

Steve

chevy4x4trucks · January 4, 2002

I suppose the one good thing that can put you at ease is they've ruled out all of the very serious life-threatening ailments.

Try looking on www.webmd.com

General Lee 01 · January 4, 2002

Sorry to hear about that man.

I hope they find out what it is soon and tell you.

Shaners · January 5, 2002

I wish I had some info for you Steve, and I hope the other docs find some info out for you soon.

Around here, the best place for answers is the "Cleveland Clinic". They have some of the best people in the world working there.

My uncle had some serious problems that no-one could diagnose. He went to all the "experts", and finally found them at the Cleveland Clinic. He lives in NH and since money is no object for him, he went where he thought was the best advice. He traveled all over the country before he was properly diagnosed in Cleveland.

You might want to check with them...

Shane

DigUout · January 5, 2002

Sorry to hear that news Steve. As others have stated, try to keep a positive frame of mind and don't worry about what you can't control. Positive thinking and faith can do wonders. hang in there -

NewbieZ71 · January 5, 2002

You skipped quickly over the hip bone biopsy......bet that wasnt very pleasant!!! Get well!!

MountaineerTom · January 5, 2002

Sorry to hear that Steve. I wish you the best of luck and hope your spirits stay high.

SteveSierra · January 6, 2002

Thanks for the respones guys. This board has some truly Class A folk in it and I appreciate it very much.

Shane- I just may check into the Cleveland Clinic. The doctors at Johns Hopkins thought it was what my hematologist already ruled out, parvovirus. I'm gonna have a gammaglobulin infusion on Monday and Tuesday(3-4 hours each day, arrrrrrgghhh). That is supposed to dump a load of antibodies into my system and should fight off any virus(that is known out there) that may be attacking my system. Fingers are definately crossed and prayers are being sent upwards.

About that hip bone biopsy, all I can say is OOOOOOOOOOUCH!!!!!!!! He gave me 2 shots to numb the area, but it still hurt like hell! He was saying, you have thick bones. I was like, yeah, okay, are ya done yet???? Nope, I'm having trouble getting through the bone! Nooooo!!!!! That was back in the middle of December and the area is STILL tender. He is talking about maybe doing another one in 2 weeks.

I am definately not looking forward to that! Makes me cringe thinking about another one.

Well, the 2 pints of blood I got on Thursday bumped my hemaglobin up to 8.2 and I tell you, it does feel great to have some energy back. The gammaglobulin next week should make the count go back down though. It's a rollercoaster ride.

Thanks again for letting me ask these questions and get this stuff off of my chest. This really is a great board. I'll get back to talking trucks soon, I promise!!!!!

Steve

Kansas Kid · January 6, 2002

I think I speak for everyone here is saying that you can talk about this all you want. If it helps you get things off your chest, go for it. Its a good place to talk about things and get all kinds of different opinons. I hope the doctors find out what is wrong and can get you fixed up as soon as possible.