Blood Test Results/Anemia

[Guest guest]

I'm in a quandary and need someone to talk to that understands where I am

coming from, when I talk to my " people " they look at me like I have two

heads. Well not really, but they have no idea what I am talking about and

it is a really long story, I lose them about half way into it. So, I was

hoping I could bore my faithful PAers with it.

I recently went to Salt Lake and saw my Rheumatologist. He is very

disturbed by my blood work. My blood counts are whacked and he says I am

very Anemic. Most everything in my CBC is either low or high, my

Hematocrit is 32, and the reference rang for hematocrit is 38 - 46. My

hematocrit is always low, so his concerns must have something to do with the

other highs and lows in the CBC in relation to the hematocrit. When I had

the tests done locally, my GP ordered follow-up tests, B-12, Folate, & Serum

Fe (Iron), but they all came back normal. My Rheumatologist said that I

should be feeling poorly and at least I now know that there is a reason that

I feel so bad, I get winded when I do anything. It is normal for people

with inflammation to have lower then normal blood counts, but there is

nothing in my situation that he can see that would cause the numbers it am

presenting. He said if I woke up tomorrow with a hematocrit of 45, I would

wonder why I felt so good. He talked about one of the magics of Enbrel, he

said that it increases the blood counts, and counteracts some of the

problems caused by the inflammation. He told me about a patient that he has

been treating since she was 12 and is now 21, it didn't matter what he did

her hematocrit was never above 33, when he put her on Enbrel the count went

to 45. Which I guess explains why the fatigue I had been experiencing prior

to the Enbrel improved once I started it. He spoke of bone marrow toxicity

briefly, but said that we were not going to talk about that until we get

some test results. To determine the level of inflammation in my body, he

ordered ESR (sed rate) and a C-Reactive Protein Test. To determine what my

Iron is up to, he ordered Iron +TIBC and a Ferritin Test. To see what my

kidneys are doing he ordered a test to determine the Erythropoietin Level,

Erythropoietin is a naturally occurring hormone, produced by the kidneys,

which stimulates the body to produce more red blood cells. It is also known

as EPO and through cloning; they have developed a synthetic form that it is

used for helping cancer patients with the side effects of Chemo. Athletes

are also using it in " doping " apparently it oxygenates the blood and is very

difficult to detect and it is against the rules for them to use it.

So where does this all leave me? Waiting for the test results, is guess.

If the inflammation level is high, he may want to switch me from Enbrel to

Remicade so that the dosage can be adjusted easier. He says that if they

find a " benign " reason for the levels being low, they can put me on the EPO

and try raising the levels that way. If all else fails he will want me to

see a Hematologist. I guess that would be when we get to talk about bone

marrow toxicity. I have been reading about blood disorders this week,

probably a little more then I should. I have found several connections

between the meds I take and blood disorders, I have never been one to be to

afraid of the side effects if the quality of my life can be improved. I

sure hope that isn't back firing on me. I definitely do not want to go off

any of my meds; I take both Enbrel and MTX and in my opinion, they are doing

the job. I sometimes wonder if I am used to feeling bad and that they are

not working as well as I think. I guess going on Remicade would not be the

end of the world, but I like poking myself with a needle and being done with

it. 2-hour infusions at the hospital sounds like a bit much. I told him

that he was making me nervous, he said not to be nervous, but whatever

happens there will have to be some changes.

Thanks for listening to my rambling, I'm not getting myself to worked up

about this, well maybe a little worked up, but I like to be an " informed

patient " and with the internet at my fingertips, I tend to research things,

sometimes a bit too much. I get just enough information to give me more

questions.

Becky

Courage does not always roar. Sometimes courage is the small, quiet voice at

the end of the day saying, " I will try again tomorrow. " ~ Unknown