how do you feel when your hemoglobin is real low? like ~8 range or your lowest.

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debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 6/13/2010 4:15 PM (GMT -7)   
I have been told to Double up on SLOW FE suppliments daily..

What do you guys tend do feel like... Walking, heart rate, resting.. Whats your general typical day feel like. Are you more anxious?

thanks all.


for me? its Blood pressure around 90/60 all day, i feel the BP go down as i sit back down. and just feel kinda winded. Oh an anxiety makes the windyness feel worse. lol
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8566
   Posted 6/13/2010 5:24 PM (GMT -7)   
My Hgb was 7.5 two weeks ago. Got a blood test Friday just gone, so GP will call me back if it's got worse.

I feel pretty bloody awful a lot of the time, to be honest. Walking is okay, but anything remotely hard-going is undoable. If I run, I get out of breath and feel nauseous very quickly.

Am anxious but it's not really got any worse. More irritable, definitely. I didn't think it was possible, but I am actually more irritable than I was before... <_<

Don't know if this is relevant, but concentration is absolutely shot. Can't read books anymore. Even posting on forums is too much a lot of the time.

I also have peripheral neuropathy. Have a low level of it in my legs virtually all the time now; a kind of weird 'crawling' or tingling or mildly itchy sensation. If it gets bad it can affect other parts of the body but it is mostly in my legs and feet.

And finally, exhaustion. Listlessness, inertia, langour, lassitude, brain fog... whatever you want to call it. I hate that the most of all and if I'm unlucky I'm that way for hours and hours, especially in the evenings.

Dunno if that helps... :s

j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 6/13/2010 6:37 PM (GMT -7)   
I got as low as 6.2 a couple of years ago, the nurse called me with my blood test results and wondered how I wasn't in the hospital already. I felt exhausted. Walking up the stairs left me out of breath for 5 mins, reading my son a bedtime story felt like I had just run a mile. I should have a transfusion but I talked them into iron infusions instead. Not sure if that was a smart move, but I survived. I don't remember anxiety being a symptom of my low hgb.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 6/13/2010 6:46 PM (GMT -7)   
Just exhaustion. Though I stay exhausted, it's a whole 'nother level. I'm really low right now and we can't get it up quickly. Guess it takes time. We are doing weekly iron infusions.

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/13/2010 10:30 PM (GMT -7)   
mine was 9.9 a few weeks ago when i was in the er for a kidney stone...i have been so tired lately- level was up a bit last week due to iron supp. but the lethargy is still a big issue.
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/14/2010 6:43 AM (GMT -7)   
Whenever I have been anemic, my biggest complaint has always been extreme fatigue.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 6/14/2010 10:04 AM (GMT -7)   
I am always fatigued.
My issue is heart rate and Blood pressure.

Like I feel the Blood pressure DROP significantly when i sit back down and than the shortness of breathe comes.
Hemoglobin is 8.3

Anyone notice Rapid Tachycardia?
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 6/14/2010 10:04 AM (GMT -7)   
Sure the internet says yes, but id rather here from you all..
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/14/2010 11:34 AM (GMT -7)   
Debilitated why don't you ask your doctor about this. I think he would be the best person for you to talk to about this issue.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 6/14/2010 12:03 PM (GMT -7)   
I will reply.
 
I am very sensitive to this number.  I had it checked several weeks ago, as I suspected something, and it was 13.
 
My g.i's nurse said, that is normal, no trouble.  But I had been in a flare that was unresponsive to pred. or anything I was throwing at it. 
 
I had already started taking iron, and within one week, I was feeling MUCH better.  So 13 is not a good number for me.  It is summer, but when this number is "low", I get very sensitive to the temperature.  I cannot stay warm, I want to just sit outside in the 90 degree weather, and that is just not right.
 
I am sitting now inside, with the AC going nonstop, not cold, not hot, body temp is doing great.  I just mowed the grass(riding mower), and managed to sweat, curse, and hate the hot weather for the first time in a while, it was kind of nice.
 
I have seen this number at 1 before, several years ago, when I was with a g.i. that was not taking good care of me.  I remember seeing the results, the number 1 was circled, and had alot of arrows pointing at it.  Life was hard then, and that feeling of not being able to warm up has stuck with me, so at least I have an idea of what is going on.
 
I am staying on iron for a while now, at least a few more months, taking it everyday.
I guess there really is not a normal range that fits everyone.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 6/14/2010 12:06 PM (GMT -7)   
when my iron is that low all i want to do is sleep and i cannot stand for more than a few minutes and i cannot have a good conversation. it might be time to get a transfusion??? watch the levels.

get something else besides slow fe. it constipates you and irritates the stomach. go to a health food store and find an alternative. i dont know why doctors keep recommending it. ferrous sulfate is horrible.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8566
   Posted 6/14/2010 1:17 PM (GMT -7)   
@debilitated - No, I don't notice any tachycardia. Don't know what my blood pressure is. Last year it was on the low side of normal, but don't know what it's like now.

It's not really any of my business but I have seen you post about your tachycardia a lot. This seems to be a big worry with you, which I don't think the folks of this forum can resolve for you. Your doctor should be the one putting your mind at rest over this issue. From what you've said, you don't seem to be in any danger at all, but your doctor needs to be the one to convince you of that :-/

@Homeboy - Hgb at 1? I dunno if that is possible, or if a person would still be alive at that value. I have never heard of Hgb being that low before.

@CrazyHarry - Ferrous sulphate is horrible stuff. Even the supposedly easier to tolerate ferrous gluconate I couldn't tolerate.
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