2 WK. Blood Counts. Hemoglobin Down From 15.4 to 11.9

[drew1985]

Hey guys,

WK 2 labs: Hemoglobin dropped from 15.4 to 11.9 - WBC's dropped just a little bit.

My doctor's nurse just called me and told me that my hemoglobin has went down from 15.4 to 11.9 in the first few weeks. I've been feeling really fatigued here the last 3 days or so and last night I was a little short of breath. She told me that it was my choice to get blood work done sometime during week 3 or just to wait until week 4.

Since my hemoglobin already has had a rather large drop - she told me that I would probably eventually have to go on procrit sometime during tx.

Is there anything anyone can recommend to naturally increase my hemoglobin? She told me to try and take at least 400mg-1G or folic acid (I already take 400mg in my daily multi vitamin). She also told me that I can take a little iron sulfate if I can handle it... I'm already a tiny bit constipated so I'm not too sure about the iron.

I'm kind of scared that my hemoglobin is going to get dangerously low - I think I'm going to go get blood taken again during week 3 sometime.

Will Procrit give me a boost of energy?

[Forseegood]

but your nurses suggestion about taking the folic acid? and you said you already take it in a multiple? I don't know enough about blood counts in treatment to know whether folic acid is the thing to take....I've heard that often enough though...

but one thing I will say (maybe controversial, since many here take multi-vitamins) from only my experience and knowledge? You don't necessarily get the full kick of the supplement from a multiple...it's merely spacial, or physics...look at a 500 mg tab or capsule of Vitamin C for example...it's as big as most multi's on it's own..... how can you fit everything you need into a muliti? Maybe trace amounts? I don't know enough about it, but it would just stand to reason.... I might take a multi of maybe 2 or 3 supplements, but I usually take each supplement on it's own if I can help it, that way I'm assured I'm getting the full complement of the vitamin and I have a better knowledge of what's in it and how much...just my take, others might have differing points of view...

[FlGuy]

All this stuff is pretty daunting and even without a drop in hgb it all can make your head spin.  Keep up with your labs.  Don't worry about your questions, lots of people have been through what you're facing and have been on the path ahead of you.  Hang in there.

[drew1985]

Thanks,

Yes, I've had mild ringing in the ears but about 4 days ago I had pretty bad ear ache on and off for about 30 hours. That's about it...

I think I might be freaking myself out - I'm a big hypochondriac (sorry, I might post rather frequently.. wish I could help it) - just worried than an unsafe drop in HGB may cause sudden death or something. That xanax made me feel slightly better and now got my most of my breath back ... so maybe I was just freaking myself out.

[FlGuy]

Frequently, the effects of rapidly lowering hgb and anemia also include ringing in the ears.

[drew1985]

It also sucks because I can't tell if the shortness of breath is from my anxiety/panic attack problem or the heavy drop in HGB. I'm feeling really short of breath/lightheaded/dizzy/panicky right now but I think I might be having a panic attack.

Just took two xanax... agghhh this sux.

[drew1985]

BTW, I'm not sure if the lady is his actual nurse but they seem to have assigned her the role in calling me. She's rather young so maybe she is just new - either way I'm going to make sure I speak to the actual doctor more instead of her.

Sorry about all of my questions, sometimes I am really quick to ask a Q - I just did research on the procrit sx so never mind my questions about procrit.

[drew1985]

I just noticed the link to the docs profile got cut off. Heres the shortened link:
=====>   http://tinyurl.com/54es58

[drew1985]

-------------------------------------------------------------------------------------------------
Jim Wrote: "Is your doctor a hepatologist (liver specialist) or a GI?"
-------------------------------------------------------------------------------------------------
My doctor is a GI/hepatologist out of the University of Michigan Liver center. I've only spoken with this guy once and all of the other times I spoke with his nurse/educator... I'm not sure how experienced she really is but I really think she was giving me her own personal advice. Next time I'll ask to speak to the actual doctor.

I'll probably go in for blood counts again on Saturday. The shortness of breath was very minor and it happened when I was trying to sleep last night. But I have been really fatigued the last 3 days... Again I watch my kids Sunday through Wednesday ... they were both sick (ages one and three)... it was terrible!

I'll call her on Friday and demand the procrit (thanks for the advice)- I'm pretty sure that blue cross will cover it as they covered my entire riba and peg (minus the copay).

I had my blood taken Monday and I started tx the 28th so I believe it dropped 3.5 points in just 10-11 days. :(  Is there a big downside about taking procrit? Does it have any odd/severe side effects?

I just searched Google for my doctor. Here's his profile (says he's a gastro but most of his interests are viral hepatitis and Liver disease):
=====>     http://www2.med.umich.edu/departments/gastroenterology/index.cfm?fuseaction=gi.facultyBio&individual_id=77957&um_department=Internal%20Medicine

Has anyone ever had any bad experiences with this guy?

****SIDE NOTE****
I want to thank everyone on this forum for all of your support and information. I don't know where I would be if I never found this forum. Thanks everybody for all your support and advice.

Best wishes,
Drew

[jmjm530]

How fast your hemoglobin (hgb) drops is as -- perhaps more -- important than the actual number. You've dropped 3.5 points in only two weeks which is very fast drop. At this point you should be tested weekly, or even more often if the symptons get worse. At the same time, you should have a discussion with your doctor right now regarding intervention with the helper drug, Procrit.

Procrit takes 2-4 weeks to kick in, so without some lead-time, you could easily (you're already running out of breath)  run into a situation where they will have to either reduce or temporarily stop the ribavirin. Both scenarios can potentially compromise a successful treatment. Personally, I wouldn't wait, but would ask for Procrit right now to ward off those possiblities.

Lastly, your nurse's suggestion of iron sulfate -- without Procrit and in what may be the absence of iron store tests (ferritin and TSAT) -- may do more harm than good, and suggests you may not be treating with an experienced HCV team. Is your doctor a hepatologist (liver specialist) or a GI?

-- Jim

[gauf]

Agree with with FlGuy. You need to get proactive on the procrit.

[FlGuy]

Early in tx you should get labs every two weeks to look for such trends.  While you're at it have the doc start looking into when procrit (what level) will be introduced including getting the ball rolling with insurance to understand what ins. will cover.  No need to drive into the energy ditch if you can avoid it.