hemoglobin levels concerns

My hemoglobin levels dropped from 14.5, pre TX, to 11.4, three months later.

My question is can the dropping HgB cause the feeling of always being out of breath, of not being able to talk long because of that, as well as general overall weakness and a tightness in the chest?  (I've had asthma and bronchitis and the chest discomfort doesn't feel anything like that).

Thanks in advance for your comments,

Wyntre

[jmjm530]

If you had said "three weeks" instead of "three months", it would be an easier question to answer.

At least in my case, three months was adequate time for my body to adjust to approx a 3 point drop in hemoglobin to the extent that I did not suffer too much from anemic symptons including shortness of breath.

That is not to say this is the case with you, but it's quite possible that the symptons you describe are simply resulting from the treatment process which includes mild anemia with most of us.

That said, if you haven't already, you should bring these symptons to your doctors attention right away so they can run any tests deemed appropriate, including possibly an EKG.

Question -- when you say you can't "talk long", is it an energy thing or do you actually get hoarse with a resulting loss of voice? Because if it's the latter than I would look into the possiblity of of LPR (Laryngopharyngeal Reflux) as the cause of both the hoarsness and tightness in chest. And then there's the "Venus" factor, cause trying to out talk a parrot can fly in the face of even the strongest vocal chords :)

Be well,

-- Jim

[wyntre9]

Hahahahaha!

She does out SCREAM me!

I've been having these symptoms all along but they seem to be getting worse.  The HgB didn't drop (and that was just barely) below what my lab says is normal range (11.5 to 14.5) until around mid March.  Like you said, it's been a gradual 3 point drop.  (14.5, 13.5, 12.5 and now 11.4)

I know from what I've read on Forum and on other medical sites that many Doctors don't even treatlow HgB until it's below 10.

I don't want to take any more meds.

I'd just like to know if anyone else has had these symptoms and if so, whether they're more from anemia than SX of peg, neupogen and riba.

The trouble with talking is that my post nasal drip is so bad I either start choking after a few minutes or I just run out of air.  It's very strange coz as a long-time woodwind player - I could hold a note for over a minute - and a vocal music teacher - having to sing and talk (and SCREAM) ALL day - I've NEVER suffered from airlessness.  (or writer's cramp)  :)


But I don't think it could be reflux coz I don't have any gastrointestinal issues (YET).

OK.  Let me try REAL hard to be specific.  Can lower HgB levels cause one to feel short-of-breath?  I read somewhere that it could have something to do with the decrease in oxygen in the red blood cells or something . . .

[jmjm530]

The short answer is "yes", they could, but not necessarily. I add the "not necessarily" part because your hgb drop was so gradual and I dobut if many doctors would prescribe a rescue drug like Procrit in cases like yours. The reason I mentioned bringing it to the attention of your doctors is to rule out other things such as issues with your heart which I think unlikely but better safe than sorry.

As to LPR reflux, it's often called SILENT REFLUX because there's often no hearburn or gastro issues. LPR for that reason is often overlooked, especially by gastro's, in spite of the fact that it often presents with the exact symptons you describe.  This is not to say of course that you have LPR, but if it were me I'd get an appointment with a good ENT doctor who have special instruments in the office that can look down your throat and examine the vocal chords. A gastroenterologist is not equipped to do this in their office.

You also mention "post nasal drip", so seeing an ENT is a no brainer to me, just as ruling out any heart issues with an EKG. At a minium they can offer some relief to your post nasal drip, etc, and if a dx of LPR is made, they will most probably put you on double Nexium which should start the healing process of your vocal chords if that indeed is the problem.

Be well and give my regards to Venus.

-- Jim

[ladybug52]

Well, when I was on tx :) I had a hgb drop and had all the symptoms you listed. In the first 2 weels it dropped fro 14 to 11 and then a week later to 10. I was doing the whole procrit thing and felt better, but then I noticed my HGB was rising so I stopped the procrit on my own. When I felt bad I'd have it checked but it was in normal range from 11-12. My dr said to keep taking the procrit even at 12 because it would make me feel better. Well I did one more shot and I don't know if it waas the procrit or the stopping tx, but I think it was the procrit. I would get light headed when I bent over and that was the big difference for me when not on procrit. Bending over to tie  everyones shoes all day would do me in! (well, not everyones, but some couldn't get to their shoes)
Good luck,
Bug

[wyntre9]

I will but I hold you personally responsible for having gotten her hooked on AL!  :(

I've seen ENT - he scoped me about two weeks ago - said a lot of the problem (hoarseness, post nasal drip) was cause I need more moisture in the nasal passages.  He recommeneded guaffinnisin and that does seem to help.

The gastro did an endoscopy the same day he did the biopsy (12/5/06) and the endo results were neg.

I'm sure I don't have a heart problem.

Which leads to my last question (for tonight).

Can lower Hgb coz lower blood pressure?  Mine is always around 120/100, 120/110 or thereabouts.

Last week at the PCR it was 100/70.  I wonder if that's coz of tx and also whether low blood pressure can cause you to feel out of breath.  I know it's probably causing the dizziness I feel if I have to stand for more than a couple of minutes.

I have no endurance anymore.    :(  :(

Thanks for responding.

[wyntre9]

"Well, when IIIIIIII was on TX."  

You brat!  :)

I'm at the point I don't want to go the doctor unless it's an absolute emergency.  (which this isn't - although i have been getting a bit embarrassed when I go anywhere and have to ask for a chair so i can sit down).

It's more a QOL thing and if I hear other people have had similar SX then i can chalk it up to just another discomfort of TX.  Plus i won't be so hard on myself when i can't get a darned thing done.

(And noooooo - I'm not just trolling for excuses to lie around the house, watch all of jim's favorite shows, and chat on forum).  

*LOLIMM*  
translation - Laughing out loud in my mind -

That was my solution to Mike Simon's vehement objection the other day that people who write *LOL* never actually ever do.  (Laugh out loud, that is, at least when they're by themselves).

Wyn

[Myown]

My hemo is 11.1 for the last 2 labs. I get slightly out of breath when walking up a hill, but not bad, but I do notice the change.

My post nasal drip at night is bad but during the day I haven't noticed it. I hope I can make it through tx without the helper drugs though. it seems that they have sx of their own and as with you, its so hard to figure out what drug is causing the sx.

Hope you feel better.

[wyntre9]

MO,

I have to admit I can't imagine YOU running out of air!  "LOL. . . hehehehe*

I agree it's best not to take any more meds than you have to.

(11.1 - that's lower than mine.  Maybe I'm just a big baby?)

[jmjm530]

Did the ENT stick a small lighted probe up your nose to look at the vocal chords, or did he just use the tongue depressor and make you say AHHH? If he didn't use the nose probe (forgot its name), maybe another visit is in order if the Guaffinnisin doesn't do the trick. At that point you can show how smart you are and nicely ask if he can stick that lighted thing up your nose and down your throat to check for LPR (Laryngopharyngeal Reflux). For some reason -- insurance perhaps -- they don't always do this on the first visit but it's really the only way to get a really good look at the vocal chords which helps make the diagnosis. Meanwhile, you might try something OTC recommended by my ENT called "Simply Saline". In addition to using it per directions several times a day, he also suggested spraying it directly into my throat and then trying to "gag"/cough it out to lossen and get rid of the phlem. A Neti pot, found at your local health food store, is another way to go. As to your blood pressure drop, I don't know if it's related to a hemoglobin drop or not, but I don't think it's uncommon for bp to drop during treatment. It's really not all that low and nothing I'd worry about unless your doctor is concerned. You'll note in "Bug's" post above, that her drop was in 3 weeks, not 3 months like yours. Big difference in terms of how the body reacts since three months is more gradual so the body has more time to adapt.

-- Jim

[wyntre9]

I knew it.  I'm just a wimp.  :(

But NO ONE (or almost no one) is as strong as bug (3 point drop in 3 weeks instead of 3 months) except for . . . )

ENT has been scoping me for years.

He also used to do steroidal injections in the turbinates (hmmmmm - i wonder if THAT'S a risk factor).

The ENT does the whole routine - numbs my nose up then sticks that mini flashlight/camera at the end of a long sqiggly black snaky thing down one nostril, into the sinus cavities, down the throat and then down the other nostril.  He's scoped me where no scoper has gone before.

(God, I HATE that.)

But I am gonna read up about the other thing you mentioned - the LPG.

Thanks everyone

[Myown]

MO,

I have to admit I can't imagine YOU running out of air! "LOL. . . hehehehe*
------------------------------------------------------------------------------------------------------

hey was that an insult? ha!  Yeah I guess it would be hard for anyone to imagine that about me. I need duct tape.LOL

[rosebud57]

i thought that it was the drop in hemo that caused me to feel short of breath and fatigue. with the procrit i felt better.

but never knew what caused the strange and different sx i experienced each week.

[Htownwife]

Sorry to hear you're feeling bad. Hope you feel better soon.

I remember this point in my hubby's treatment was not easy on him. I remember well, because we were driving our son to college, and moving him into a dorm. It wasn't easy at all!! This is brutal stuff.

Let us know if you start feeling better (or not!)

BTW, did you see where a guy in Houston climbed a 60 foot pine tree to rescue his pet Cockatoo who had escaped from his house?
He had to be rescued by a Coast Guard helicopter!!

Now don't you try doing anything like that if Venus escapes!!

[jmjm530]

Wyn: He's scoped me where no scoper has gone before.
(God, I HATE that.)
------------------------------
Yeah, that's what they all say.


BTW that's "LPR" not "LPG". LOL. But yes, do mention it cause you never know.


-------------------
MO: I need duct tape.

Let's keep this PG, OK?

[ladybug52]

Love how you did my own line better than I did:
"Well, when IIIIIIII was on TX."
But I think my hgb drop wasn't that bad, I know many have posted a lot worse. The thing is not the numbers as much as how do you feel? Sometimes I felt like the procrit could help, but I wouldn't take it cause the numbers weren't low enough. And if you don't want to take it but want to know why you feel so short of breath, it's probably the HGB droppping. I mean it's biggest function is to transport  oxygen so we DON't feel short of breath. The tx causes fatigue but IMHO the real culprit to shortness of breath is the level of hgb circulating O2, or not circulating it efficiently.

[friole]

Even if it has taken 12 weeks to get to 11.4, I am sure you feel it dramatically.  It is not only how fast it drops that gets to you.  Mine dropped to 11.2 at week four and never rose out of the 11s but I hung in there until it hit the 10s (at 17 weeks) and then started using Procrit.  Honestly, Wyn, I could feel every tenth of a point.  If your doctor has okay'ed it for when you drop to 10s, you might want to check with the pharmacy and see how long it will take to get it.
frijole

[orphanedhawk]

My doc upped my riba and my hemoglobin has gradually been declining. Anemia, low rbc, is a sx of ribavarin. I look in the mirror and all I see are purple rings around my eyes. My arms look like a junkie. All I need is to dye my hair black and call me Morticia.
   I am terrified at the idea of another shot!! I'm already doing the one interferon and neupogen twice weekly. That with my weekly CBCs are more than enough shots for me. I'm already getting phobic. I see my doc next week and will talk to him about decreasing the riba. You might talk to your doc about the the rbc/riba connection. If its any consolation, someone is out there hating the same thing you are.
  BTW: beautiful tom fantail this morning with 5 hens. He had so much color in his tail, bronzy gold stripes. Wow.  gobble, gobble.

[wyntre9]

"my chest feels more or less collapsed all the time. its hard for me to take a big breath and when i do it makes me cough.
on the best days my lungs work almost normally."

Sorry you have that problem, CW.

I've had similar reactions when i had bad asthma or bronchitis, but not during TX.

My problem is more that I can't exert myself much coz I'm so weak and when i try to do too much it feels like I'm gonna pass out.

LB gave a good explanation of the reason that could be happening . . . that there's not enough oxygen getting to the the blood.

but I don't know for sure.

Feel better.

wyn

[cruelworld]

although my cbc's have remained in line, my chest feels more or less collapsed all the time. its hard for me to take a big breath and when i do it makes me cough.
on the best days my lungs work almost normally. anybody else have this?

[wyntre9]

MO -
You KNOW i love ya to death and NO ONE can give or take a joke like you!  
xoxox

Rose,
thanks for sharing.  Sorry you're having the same SX but it helps to know others experience these things, too.

HT,
Your husband must be almost done.  2 weeks, right?

Can you send me a link to that cockatoo story?  you know i wanna read that.  :)

JM
Thanks for saving me hours of googling LP- instead of LP-.  (don't worry - I'll check your response again before I start.

LB,
that was a wonderful explanation.  I get it now.

Friole,
glad you understand what I'm saying.  I didn't realize it could get down to .10 of a point to provoke a reaction but I think you must be right.  Maybe I'm super sensitive coz I spent so many years concentrating on breath control when I played wind instruments.  Maybe i SHOULD pick up the flute again.  

Hawke,
I feeeeeeel for you, you poor thing.  And being as tiny as you are this stuff must really do a number on your poor body.

But, if ya get a chance to take a pic of the tom and his 7 hens please send it.  I'm still trying to rotate the totem vulture.

[dperry10]

Those are exactly the symptoms that I have with the low HGB.  I did not get my quest report yesterday for this weeks lab. but should have it today. to see how I am progressing on that.   I had more than 5 drop in HGB just in the first 4 wks.  I have been on procrit since then and it has not even made it back up to 10 yet.  I went back to work this week too.  

I think I need to go for a chest xray too because, I have alot of fluid, when I cough, a lot comes up...  And wheezing when I lay down.  The Hemo listed to my chest last week and said my lungs do not sound good.  but I do not see my treatment doctor again till 4/24, but planning a vacation trip the end of next week, so will be checking with doctor about my lungs before going.  

I hope you start to feel better soon,   But your body should adjust to those levels,   even mine being in the 9's    , start to adjust, but you still feel the fatique, and tightness.  

[nygirl7]

A three month drop of that little isn't really that bad comparitively to what has happened to some others (i dropped from 15+ to 9 in 10 DAYS).

It's not just what the number IS it's how fast you go down.  Your body just can't acclimate to the drastic shortness of oxygen in your blood stream.

11.4 is a pretty high number in all actuality even though it doesn't feel that way. I treated for 72 weeks and even with epogen my number never really went higher than 10.5.  My body got used to it and the shortness of breath (and passing out dead which I was doing) stopped.

Unfortunately it's just something we have to deal with.

If you get down towards 10 then maybe your doctor will consider giving you procrit at that point.

Good luck, be careful while you are weak on the stairs and driving and stuff.

[Jordie59]

I just did shot 41 of 48 and my HGB has not been above 10.3 since the 2nd week of treatment and I am on a rescue drug. Mine usually averages around 9 range. When mine is going down I can tell because I get a hollow feeling in my chest. But I have also noticed my body within a couple days always adjust to the new level. I think the out of breath feeling does come because of the amount of oxygen that is not circulating because of the low HGB.

Jordie

[madbrad]

Wyntre,
I went thru this 3 months ago.....I didn't know to watch my Hemo...I left that up to my team at the VA...They've been on top of everything so far..But this time they dropped the ball...My HepDoc likes to maintain 10.0 and above,He acts when it drops below 10.....Mine had dropped to 8.8.....I was a sick puppy,All around feeling like **** weak,fatigued..BREATHLESS...I just thought it was a part of tx.......I waited a week and went in to see my team and they took a cbc and it came bcak that I was 7.2.....If you've ever heard a babies heartbeat on a ultrasound then thats what I was hearing in my OWN eardrum... I was hurting...Anyhow they immediately recommended dropping Riba till I could get stable.....They gave me 40K units of EPOetin,Which I think is Procrit...The kept me on it for 6 weeks at 20k units per week.
   That was the trick.......I was severely anemic........

[madbrad]

At any rate just keep in mind that the RED blood cells are your little red wagons that carrys Oxygen...If you don't have enough red wagons to carry oxygen,your body is Starving.

[sallyo]

Hi, just got back from two doctors regarding the shortness of breath issue.  One was a cardiologist and the other ID.  They are both convinced that my sob is probably due to anemia.  I was 14 in Jan and now high 8's.  I specifically asked if the peg and/or riba alone would case that and they both said no.  They admitted that it probably does not help the situation and that the riba can cause the anemia which in turn causes the sob.  I am now on Procrit twice a week.  Just wish it worked faster because I am missing work.

[wyntre9]

"Those are exactly the symptoms that I have with the low HGB.  I had more than 5 drop in HGB just in the first 4 wks.  I went back to work this week too."

OMG - you have really been going through it!  And from the beginning!  (good news, though, is that you're already UND, right?)

"I think I need to go for a chest xray too because, I have alot of fluid, when I cough, a lot comes up... And wheezing when I lay down."

that could be asthma, bronchitis or post nasal drip - oh and let's not forget allergies.  Or you could have a an upper respiratory infection and need antibiotics.  

"But your body should adjust to those levels, even mine being in the 9's , start to adjust, but you still feel the fatique, and tightness."

thanks for the heads up.  that's what I wanna know - from you and other posters, sounds like this is just another of those 'normal'
SX.

thanks for the comments, dp.  hope you're doing better.

wyn

[wyntre9]

"Yes, it is called ribaviron induced anemia.  Its NOT uncommon for riba to cause sudden drops in red count."

Thanks sal.

"it works on a different phase of the viral reproduction. With the interferon attacking it in one life stage and riba attacking it at another life stage , it is more effective. Adding a third offensive drug (like VX) would attack the virus at yet another stage. At least thats the way I get it. I'm sure others here can give a more sceinfic explanation."

Oh, that's ok.  i prefer the non scientific explanations, myself. *LOL*

"I haven't felt much like keeping up with reading or posting in a few weeks, but I'm feeling better now and wanted to check in."

I know what you mean.  Glad you're feeling better.

"Are you taking Neupogen"

i'm on neup 2x a month.

"When I was in the hospital with anemia, they gave me folic acid tablets but not sure why. Assumed it was a blood builder"

i'm gonna check that out, sal.

sorry, but i forgot - what week are you at now?
and thanks for the suggestions.

wyn

[Htownwife]

Here's the link to the cockatoo story.

http://www.chron.com/disp/story.mpl/ap/tx/4687100.html

Pets are like your kids and people will do anything for them!

As far as the ribavirin, I believe it's to cause them to not be able to replicate.
I'm sure it's much more complicated than that, but that's why you have to take it...you don't want those nasty viruses to have babies!!

Hope you're feeling better!

By the way, my hubby's taking shot 45 tomorrow, so only 3 more weeks!!!!!

[wyntre9]

hahahahah!

We don't want those nasty old ribas having lots of nasty old babies, now!

of course, the riba educators might take issue with that - ok, i won't go there now.

(See - you KNEW i was serious about an explanation for a 5-year-old, or SE kid)  :)

i posted you on the other side.

i was right - 3 weeks left for you.  Yippee!

[Htownwife]

HA!! I posted you on the other side too!!

No SE kids here, nosiree!!!

Just Ribarebels, taking the nasty virus' favorite pastime away!!!

[sallyo]

Yes, it is called ribaviron induced anemia.  That is why some people can not take the high doses. (like me)  It can ( and is NOT uncommon) for riba to cause sudden drops in red count.  That is why they monitor the H&H so closely.  With help of epo drugs sometimes an adaquate Hbg can be maintained so that reductions in riba do not occur.
   As far as how the riba works, I can not explain.  The five-year-old way I understand it is that it works on a different phase of the viral reproduction.  With the interferon attacking it in one life stage and riba attacking it at another life stage , it is more effective.  Adding a third offensive drug (like VX) would attack the virus at yet another stage. At least thats the way I get it.  I'm sure others here can give a more sceinfic explanation.  Hope you are doing ok.
I haven't felt much like keeping up with reading or posting in a few weeks, but I'm feeling better now and wanted to check in.
Are you taking Neupogen or Epo?  If not would folic acid help? I'm really not suggesting that, just asking.  When I was in the hospital with anemia, they gave me folic acid tablets but not sure why.  Assumed it was a blood builder

[wyntre9]

Thanks everyone for posting your experiences.  it just helps so much to hear how others are coping with SX.

It seems so much easier to deal with stuff when you know what the h*ll is going on.  Not that ya WANT to, but it is more tolerable when others share their stories.

madbrad - sounds like you had quite a scare.  be careful.

Sally - so the riba can cause the anemia which can cause the SOB?

I wish someone could explain WHY we even take the riba?

I understand (somewhat) about the peg and boosting the bodies natural interferon production but i still don't get riba's role.

can anyone explain it? (like you're talking to a 5 year old, please)  *LOL*

wyntre

[sallyo]

I'm on week 9 and the second time around.  The last two doses were changed from Pegysus to Peg-Intron.  I think the Peg-Intron has been kinder to me.  Not totally sure yet.  I started with a VL of 80 mil and my last Vl at approx 7 weeks was 32000.  That is with only 400 riba a day.  My doctor is trying to raise the riba dose as my Hbg rises and holds but despite all of the Procrit my body dosn't want to respond so well.  Still I am happy for some positive results and I really like my new doctor
  What about you.  Which week are you on.  I'm thinking you are also early in treatment

[wyntre9]

"I started with a VL of 80 mil and my last Vl at approx 7 weeks was 32000. That is with only 400 riba a day."

Is that a 3 log drop????

Great news.

I'm on shot 16 of 48 or 72 - long as i reach UND by week 24.  Don't know what happens if I don't get there - guess i stop?

Starting Vl 1,140,000, down to 3850 last BW in mid-march.

had blood drawn last friday but didn't get the results yet.

wyn