Macrocytic Anemia, treatment not working :(

[EllaBooBella]

Hi, everyone...

I'm glad I found this site... I don't have insurance so am going to a clinic that offers a sliding scale fee. Problem with this is.. they're not aggressive about diagnosis, treatment, etc, and I'm at my wits end. So weak and tired that it hurts my arms to type.

I have a plethora of health issues and have been in the hospital twice since late January (2013), the last time for a TIA. While there, among other frightening things, they noted that my RBCs are low, MCV & MCH is high, and MCHC is at the lowest end of normal. Please forgive me.. I forgot to add the reference ranges when I copied my labs from my paperwork.

RBC - 4.05 (listed on labs as LOW)
MCV - 99 (listed as HIGH)
MCH - 32 (listed as HIGH)
MCHC - (I didn't write the value down, just noticed it was at the lowest end of the normal range)

NOTE: The above was approximately 3-4 weeks or so after stopping the sublingual B12.

I don't drink, not even socially, don't smoke, only just recently began medications for cholesterol etc., none of which I'm told would cause anemia or have any effect on B12, folate, etc.

I was first told about this back before Christmas of 2012, and my Dr. had them draw blood to check folate and B12 (both came back as normal, B12 somewhere just under 600). He gave me a B12 shot, then another a week later, and told me to use 5,000 mcg of sublingual B12 every day, which I did for almost 3 months. Nothing worked. Nothing changed. Didn't see any change at start, nor during, not even when I stopped. I stopped due to the expense and due to no improvement. I lost my job due to the first hospital stay.

I feel horrible, and it seems to just get worse and worse. I was just told to take B12 etc. anyway, then sent out the door. I have so much weakness, fatigue, sleeping all of the time, every muscle aches as if I've simply done too much (when I've done very little), and I can't even walk my dog around the block now because it's just too much. And I get out of breath doing ordinary things that I've done for many years. Taking a shower, walking across the room, you name it.

I started a diet to lose weight and get healthier almost 2 weeks ago and have lost about 8.5 lbs on that plan (weight watchers), but I've lost 25 lbs between May 1st and May 22nd, 14 of which I can't account for.

I look and feel like a zombie. And I'm looking for another doctor to see, one I can afford who will listen to me and hopefully help. The way I feel right now, I couldn't work.. because I can't stand for but a few minutes, literally, before I feel like I'm going to drop. Thank God I'm on unemployment, but it's not enough.

I don't know what to do. If I'm not responding to the usual treatment, what do I do? What questions do I ask my new dr when I find one??? What tests do I ask for?? Are there other tests? I can't keep feeling this way. It's horrible. I have to keep my wrists and arms on the laptop to type this, and it still hurts my arms.

Any suggestions or advice at all would be a Godsend.

Thanks so much in advance.

Ella

[Tom C]

Hi Ella,
Sounds like you are going through a lot. It can be overwhelming, especially when you're dealing with insurance issues. There are some important CBC numbers not included in your post. Do you have your hemoglobin (HGB), platelet (PLT), or hematocrit (HCT) numbers? These are important when your physician is looking at treatment options & making a diagnosis. I would recommend seeing a hematologist, who will be able to give you a clearer idea of what is going on & what treatment options are most appropriate for you.
All the best,
Tom