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Posted 10/7/2010 10:51 PM (GMT 0)
We got a call today from the GI Nurse. She left a message that my Daughters Hemoglobin is very low. I couldn't get back in touch with her, so now I'm worried. She has been on an iron supplement all along, but she admits that she misses it sometimes, including the last 4 days in a row. The nurse suggested doubling the iron, and wait until her next bloodwork to see how it is. I know from experience that things can happen so fast with this disease. She's been eating fine with no bathroom issues. No blood passed. She does say she's really tired lately. Anyone think there's a serious concern.
Posted 10/8/2010 1:12 AM (GMT 0)
Anaemia by itself isn't anything to be seriously worried about, but it can cause tiredness, shortness of breath, restless legs and other unpleasant symptoms. If the haemoglobin is low enough, an iron transfusion might be in order. The anaemia won't go away of its own accord, so it should be treated. I know it's easy to say, but people shouldn't miss days when taking supplements/medications: they simply won't work as they should, if doses are regularly missed.
Posted 10/8/2010 1:23 AM (GMT 0)
If they nurse and doctor aren't worrying too much you shouldn't either. If they thought her level was too low they would suggest an iron infusion. Maybe you could suggest that the next time you go for your daughter. That way she has that and won't need to take the pills daily. Her level might not be low enough for the infusion but worth a shot. Would be a lot easier for her to get the infusion that way she wouldn't have to take the pills daily as it can be hard to remember and like you said she missed 4 in a row. I had an infusion a year ago and helped so much. No extra pills which having this disease you take enough so I'm sure she would love one less pill a day!
Posted 10/8/2010 2:35 AM (GMT 0)
How much iron does she take? When does she take it? How does she take it? 

The best way to take iron is at least two hours after taking any med, food or supplements, and one hour before taking any food, med, or supplements. Because it seems just about anything can interfere with the absorption of iron.

My daughter takes it only with a glass of orange juice - the vitamin C helps absorption. She has usually taken 27 mg, but it wasn't doing the job, so she doubled up for a month - 54 mg and it shot right up.  

Some GIs do not like to prescribe iron supplements - because nobody really whether they are safe or not, for Crohn's. The theory is that iron supplements can increase inflammation. Right now, my daughter is on a med-free and supplement-free diet for a month, partly to see how well the SCD diet works without any other intervention. Also to see whether any supplements, like iron, might be causing a problem. 

Posted 10/8/2010 3:50 AM (GMT 0)
it took me over 2 years at being at like 100 mg/d of iron to get my levels stable. i've tapered down to 25 mg/d now and so far so good. before when my levels got good, my doc had me stop and i'd quickly get transfusion level low. then he had me taper and that didnt work either. so it took me 2+ long years so far. my next blood work is in january so i'm hoping i am still ok. i too saw no blood and ate well, but it still took me a long time to get to where i am. something just take a lot more time than others to fix.
Posted 10/8/2010 5:27 AM (GMT 0)
I recently discovered that I have low stomach acid. Low stomach acid can lead to anemia, because you need the acid to help absorb the iron. My last blood test showed a few points improvement in ferritin vs the last test (which was pre-Betaine HCl). Every night at supper, I take 1 Betaine HCl with a couple dessicated liver tablets (don't like liver, which is why I'm taking the tablets). I'm also eating raisins and dried apricots, which are both high in iron. I'm crossing my fingers that this might be the answer to my lifelong iron issues. Next blood test in a couple of weeks :-).
Posted 10/8/2010 6:38 AM (GMT 0)
Having Citrus ( oranges, orange juice etc) or watermelon with her supplements, and with Iron rich foods will help her absorb them better. Also Coffee, Tea, and Cokes pull all the iron out, so drinking these things when your already low isn't a good idea.
(I work at a BLood Center so I deal with low Hgb all the time)
Posted 10/8/2010 9:40 AM (GMT 0)
Thanks for the responses. She takes 300mgs of Ferrous Fumarate, (Palafer). She used to take it with orange juice, but got away from that. Now she takes it at bedtime, and her other meds. 

The reason I'm worried is, that I want to know if she is bleeding internally at all. I know from the past that even if you can't see blood in the toilet you could still be passing it. I hope to get her in, and they do a fecal occult test.

I'm also a little concerned about her taking now 600 mgs of Palafer. Does that sound like alot? Why else would her hemoglobin suddenly start to drop?

Tom.

Posted 10/8/2010 10:27 AM (GMT 0)
I deal with this from time to time myself. Typically though it's increased disease activity that causes it for me. I know you said she takes it at bedtime, can she add a chewable vitamin C? I also try to eat a portion of Cream of Wheat daily since it's easy on my gut and has lots of iron in it. If you are that concerned I'd give them another call and ask if they think it's wise to wait or if testing should be done right now. Have they checked her B12 levels lately? That could also be cause for the tiredness.
Posted 10/8/2010 1:59 PM (GMT 0)
When mine got low they gave me an iron infusion. That worked really well for me and I haven't been low since. I can't take oral Iron as it tears up my stomach too much. Tom, I was in remission when mine got low, it just happens for some of us. But since the infusion it hasn't gotten low again. Good luck!
Posted 10/8/2010 2:30 PM (GMT 0)
Iron infusions help me also. Did they check her iron (ferritin) levels when they did her bloodwork? You also need to remember that she is a young lady and is she having heavy periods? It isnt always caused by crohn's, but it sure does affect it. I would not take double the iron, that would be really hard on her stomach and bowels.

Julia
Posted 10/8/2010 4:20 PM (GMT 0)
Ooh good point Julia, I forgot about her periods (haven't had to worry about those in years:).
Posted 10/8/2010 5:07 PM (GMT 0)
Low hemoglobin can be caused not only by low iron, but also by low B12. Seems to me by the time a nurse or doc says hemoglobin is low, it means there is anemia...it doesn't sound like an emergency, but it does need to be addressed: in fact, iron deficiency among young women is quite common, and underdiagnosed.

The fecal blood test might ease your mind. At the same time, they can take blood to check iron and B12...

To check for iron, the following four tests can be done - altogether, they tell the story of what is happening with her iron. The ferritin test is the most important, as it tells the doc how much iron she has stored - and is directly relevant to diagnosing low or high iron. Whenever a patient uses iron supplements, ferritin should be checked after about six weeks to see whether ferritin is rising.  (The serum iron test is the one done most often, but is least useful, as serum iron goes up and down in a day):

- ferritin

- serum iron (not so useful because it goes up and down in a day)

- TSAT, TIBC

It's good she was honest with you about how she sometimes forgets to take the iron - that does complicate things. 

Posted 10/8/2010 6:15 PM (GMT 0)

73monte said...

The reason I'm worried is, that I want to know if she is bleeding internally at all.


Tom.

Depending on what her hgb level actually is, I'd assume that there is some bleeding going on. I know 'invisible' bleeding is usually the first sign for me that the disease is active. Iron pills can be very hard on the gut and for me they can send me into a flare by themselves, so I take a heme iron pill called Preferrin. I don't react well to iron infusions so for me, I had to get blood transfusions before the Humira put me into remission.

If her GI determines that the low hgb is caused by bleeding (ie. not periods), taking more iron pills is like trying to use a garden hose to put out a fire. This is because of the length of time it takes for the body to convert the iron into red blood cells, and if you have active bleeding going on it's just a losing battle. So priority #1 should be to fight the inflammation itself and I suspect her GI may consider upping the Imuran. Is she taking a 2.5mg/kg dose?
Posted 10/9/2010 12:28 AM (GMT 0)
Thanks again to everyone.

I've booked an appt. with her GI for next Wednesday. I too feel that you can't just up the iron, until they know what's causing the drop in hemoglobin.

If one of her monthly blood tests was during her menstal cycle, would that show a drop in her hemoglobin? I'm just working on theories to ease my worry.

Rider Fan: I sure hope that this isn't the case, but I will be asking the Dr. this directly. As far as the Imuran goes, she recently had it increased to 125mgs per day. This is after a metabolite test to ascertain the optimum dose. She weighs about 120lbs.

Tom.

Posted 10/9/2010 1:01 AM (GMT 0)
The Mayo Clinic shows many potential causes for low hemoglobin in the link below - reasons include heavy menstrual periods.

http://www.mayoclinic.com/health/low-hemoglobin/MY01183/DSECTION=causes

Posted 10/9/2010 1:52 AM (GMT 0)
Thanks, njmom.

I'm really hoping that there's no bleeding going on as you've probably gathered. 

Posted 10/9/2010 3:25 PM (GMT 0)
Maybe her recent increase of Imuran is the culprit?? Would be simple to fix, by going back down????
Posted 10/9/2010 8:24 PM (GMT 0)
Hi Gail,

I didn't know that higher doses of Imuran could lower hemoglobin. Is this a known side effect?

Tom.

Posted 10/10/2010 4:58 PM (GMT 0)
Never heard that either Gail. I did however have to stop use because of dropping my white count, so I suppose RBC drop is possible too.
Posted 10/10/2010 4:59 PM (GMT 0)
What is her hemogoblin, because my doctors do not get really worried until I hit single digits.
Posted 10/10/2010 5:56 PM (GMT 0)
Agreed, single digits is is more serious, but anything below 12 for a woman or child aged 12-15 is considered anemia and requires attention, as the nurse indicated. 

Imuran can also cause hemoglobin issues, it is known for causing bone marrow suppression (decreases the body's ability to make blood cells). Typically, bone marrow suppression would lower the white blood cell count, but it does affect red blood cells, too - so it's possible that lowering the dose might help...this is really the doc's call.  (Since nothing was said about the white blood cell count being off, this is probably a good sign.) More about bone marrow at: http://webcache.googleusercontent.com/search?q=cache:vGaQrwp3GpwJ:lungcancer.about.com/od/treatmentoflungcancer/a/bonemarrowsupp.htm

+symptoms+bone+marrow+suppression&cd=1&hl=en&ct=clnk&gl=us 

Anemia diagnosis guidelines:

http://www.google.com/search?q=MMWR+http%3A%2F%2Fwww.cdc.gov%2Fmmwr%2Fpreview%2Fmmwrhtml%2Fmm5140a1.htm&sourceid=ie7&rls=com.microsoft:en-us:IE-Address&ie=&oe=

Anemic Ranges of Hemoglobin
and Hematocrit Values

Age/Sex (yrs) Hemoglobin (g/dL) Hematocrit (%)
Children (0.5-4) < 11.0 < 33
Children (5-12) < 11.5 < 35
Children (12-15) < 12.0 < 36
Adult Men < 13.0 < 39
Non-pregnant Women < 12.0 < 36
Pregnant Women < 11.0 < 33
WHO. Worldwide Prevalence of Anaemia 1993-2005.5
*These are only guidelines and some physicians feel the thresholds should be higher for adults.

Post Edited By Moderator (Nanners) : 10/11/2010 7:20:46 AM (GMT-6)

Posted 10/10/2010 9:03 PM (GMT 0)
Thanks njmom,

The table is very informative. When I see the GI on  Wednesday, I'll  be asking about the cause and what her RBC is at. I'll certainly report here when I find out what's going on.

Tom.

Posted 10/11/2010 2:35 PM (GMT 0)
Hemoglobin is the main component of red blood cells, so I would think low hgb means low red blood cells. Since you already know the hgb is low, the best question is why is it low? Probably due to iron deficiency, so the iron tests would establish whether this is the case. Folic acid levels and B12 can also be checked, as they affect usage of iron in the body...these are all separate tests, not usually done.

The hemoglobin test probably showed up on a CBC (complete blood count), which does not test for iron, B12, or serum folate. The CBC includes the RBC, so I suppose you could call the nurse and ask for it...but it won't help answer the question of why the low hgb. More info about the CBC below:

http://www.labtestsonline.org/understanding/analytes/cbc/glance.html 

Post Edited (njmom) : 10/11/2010 8:47:14 AM (GMT-6)

Posted 10/12/2010 1:19 AM (GMT 0)
The question of why her Hemoglobin is low, will certainly be the first question I would like answered njmom. 

I don't understand how it could be iron deficiency, as she's been on she's been on 300 mgs of Palafer all along. How could you have low iron, while taking iron?

Tom.

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