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04-19-2013, 02:42 PM   #1
Devynnsmom
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Low hemoglobin?

Does anyone know what that can mean? Devynn's nurse just called and said her hemoglobin is low (I think she said 116). She said all the blood work for inflamatory markers were normal, but that her hemoglobin is low. I asked why it was normal a week ago and low now. The family dr did blood work last Wed and the NP said all the results were completely normal. She said hmm I don't know.. I'll call you back. I'm waiting... but she's not calling back. So of course I'm freaking out.
EDITED to add- from what I have found online, normal readings for a child her age is between 135-145.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012

Last edited by Devynnsmom; 04-19-2013 at 03:12 PM.
04-19-2013, 03:50 PM   #2
ChampsMom
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Might be a silly question - but was she not on her period last week, but on it this week? Blood loss can contribute to a low result and pending her flow - heavy, light, etc... I was thinking it might contribute? (It was just a thought...)
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Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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04-19-2013, 03:54 PM   #3
Devynnsmom
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No, she hasn't got her period yet. I'm sure it will be along soon, she will be 12 in Aug.
04-19-2013, 04:02 PM   #4
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WOW! She looks older in the picture! I hope you have a big fence! She's so pretty!
04-19-2013, 04:03 PM   #5
alex_chris
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Well, the first thing I would do is check all previous blood results of the last few months and see whether there has been any times when hemoglobin levels were lower than normal too.

I assume with 116 you mean 116g/L. The normal range for kids is about 110 to 160g/L. For adult males it's about 135 to 180 and adult females it's about 120 to 150g/L. Devynn is nearly 12 years old as you said above, so the adult female range probably is more applicable. In any event 116 is only marginally below the normal range.

I have battled low hemoglobin levels in the past for years (basically anaemia), it's caused by malabsorption of iron and protein due to the Crohn (and in my case also because 2feet of smaller intestine was removed, so there just is 10% less intestine to absorb things like iron...).

If there were a sharp drop in hemoglobin levels and Devynn would be pale, tired etc., it would have to be checked whether there is e.g. some internal bleeding (can be marginally and constant) due to inflammation, but at 116 that's definitely not a concern (I was down at 50 once ... and that even wasn't due to any bleeding but chronic iron deficiency).

Hemoglobin levels can also fluctuate within a week, so it might be if she were tested in a few days hemoglobin is a bit higher again.

In any event, the most common reason for hemoglobin dropping is iron deficiency, so her ferritin level (which is the long term indicator for iron) should be checked out. In addition, it's important to see what the protein levels are (if a blood test shows protein deficiency that would also impact hemoglobin levels). Lastly, B6 and B12 can also have an effect on hemoglobin levels.

Hope that helps as a bit of an overview.
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Last edited by alex_chris; 04-19-2013 at 04:50 PM.
04-19-2013, 04:07 PM   #6
Devynnsmom
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Shell, lol thank you! Our fence is actually very low! haha will have to get a higher one.

alex_chris, thank you. Her b12, b6 and ferritin was also tested and she said they were normal. She said all the tests for inflamation were normal. She said she's not anemic (not sure how she knows) and that she was going to go back and check the other results. But now the office is closed until Monday I'm not happy with her right now.
04-19-2013, 04:11 PM   #7
alex_chris
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Shell, lol thank you! Our fence is actually very low! haha will have to get a higher one.

alex_chris, thank you. Her b12, b6 and ferritin was also tested and she said they were normal. She said all the tests for inflamation were normal. She said she's not anemic (not sure how she knows) and that she was going to go back and check the other results. But now the office is closed until Monday I'm not happy with her right now.
I wouldn't worry that much if it's at 116. That's not really low. There could be all kinds of reasons for a marginally abnormally low reading.

I think she said it's not anaemia (yet), because anaemia usually is only diagnosed if hemoglobin is lower in the long-term and more significantly lower than the normal range (below 100 on a consistent basis).
04-19-2013, 04:14 PM   #8
Farmwife
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Causes
By Mayo Clinic staff
Normally low hemoglobin counts
A low hemoglobin count isn't always a sign of illness it may be normal for some people. Women who are pregnant commonly experience low hemoglobin counts.

Low hemoglobin counts associated with diseases and conditions
A low hemoglobin count can be associated with many diseases and conditions that cause your body to have too few red blood cells. This can occur if your body produces fewer red blood cells than usual, if your body destroys red blood cells faster than they can be produced, or if you experience blood loss.

Diseases and conditions that cause your body to produce fewer red blood cells than normal include:

Aplastic anemia
Cancer
Certain medications, such as anti-retroviral drugs for HIV infection and chemotherapy drugs for cancer and other conditions
Cirrhosis
Hodgkin's lymphoma (Hodgkin's disease)
Hypothyroidism (underactive thyroid)
Iron deficiency anemia
Kidney disease
Lead poisoning
Leukemia
Multiple myeloma
Myelodysplastic syndromes
Non-Hodgkin's lymphoma
Vitamin deficiency anemia

Diseases and conditions that cause your body to destroy red blood cells faster than they can be made:

Enlarged spleen (splenomegaly)
Porphyria
Sickle cell anemia
Thalassemia
Vasculitis

A low hemoglobin count can also be due to blood loss, which can occur because of:

Bleeding from a wound
Bleeding in your digestive or urinary tract
Frequent blood donation
Heavy menstrual periods
Nosebleeds

here's the link PRESS HERE

I agree! I don't think it's much to worry about. HUGS
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04-19-2013, 04:29 PM   #9
xmdmom
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Low hemoglobin is common in IBD due to the effects of chronic inflammation on iron absorption and blood formation as well as blood loss in some cases. It's important to find out if the level really dropped or if the two doctors were just looking at a different normal range. Hydration status and method of drawing blood (fingerstick vs venous sample) can also affect the results.

The Who calls anemia mild 110-119 moderate 80-109 severe <80 for children 12-14
and mild 110-114 for children 5-11. http://www.who.int/vmnis/indicators/haemoglobin.pdf

So according to this at age 11, she would be considered normal, at age 12, mild anemia.
04-19-2013, 04:45 PM   #10
Devynnsmom
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alex_chris, thank you.

farmwife, thank you. Most of the things on that list scare the s**t out of me though

xmdmom, thank you. Both draws were from a vein and the NP had the results from the family dr in front of her when she said everything was normal. I really felt like she was not believing us at the appt BECAUSE all her numbers looked good. I wonder if she really even read through the results. She told me when she called that she was concerned with how low her hemoglobin was (I'm not 100% sure I have the right numbers) ,that is can be caused by inflamation, but all the other blood work was normal. I am SO upset with her right now. Why call me Friday, tell me that and NOT call back? *Sigh* I just want to cry.
04-19-2013, 04:48 PM   #11
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Hugs, sorry I wasn't trying to scary you.

I hate that also. I've been called on Friday and told to wait to hear back, then nothing!
04-19-2013, 04:52 PM   #12
Devynnsmom
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farmwife, I know you weren't trying to scare me. I just always get a sick feeling when a few things on that list are mentioned. I think its pretty crummy of them to call and not call back. I wonder how they would feel if it was their child?
04-19-2013, 04:54 PM   #13
xmdmom
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If your daughters looks good, feels good, and doesn't have evidence of bleeding or excessive bruising, I would not worry. It is unfair to leave you hanging over the weekend. If you can't stop worrying, call the doctor on call and s/he can check the lab and let you know more. (((HUGS)))

My 19 year old son's last Hemoglobin was 115 and normal for his age is 14-18. He is taking oral iron and will recheck soon.
04-19-2013, 04:58 PM   #14
Devynnsmom
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xmdmom, thank you. She has been feeling unwell lately, and tired quite a lot. No evidence of bleeding, or excessive bruising. She always bruises easily, always has.
04-19-2013, 05:02 PM   #15
xmdmom
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Ok so no change in bruising = :-)
Unwell but going to school and doing other activities ? yes = :-)
04-19-2013, 05:05 PM   #16
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This week, other than Wed. Last week.. no. She came home every single day early with stomach pains. But the bullying seems to have stopped and I think she is starting to feel a bit better about going. The pains she is having now are her whole stomach and they go up about 2" above her ribs (if you can imagine what I mean) she said it feels almost like a muscle pain. I asked if they have been doing anything in phys ed that could cause the muscles to be sore ( sit ups etc) and she said no.
04-19-2013, 05:21 PM   #17
alex_chris
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This week, other than Wed. Last week.. no. She came home every single day early with stomach pains. But the bullying seems to have stopped and I think she is starting to feel a bit better about going. The pains she is having now are her whole stomach and they go up about 2" above her ribs (if you can imagine what I mean) she said it feels almost like a muscle pain. I asked if they have been doing anything in phys ed that could cause the muscles to be sore ( sit ups etc) and she said no.
May I ask how the decision was made to currently only treat her only sulfasalazine? That is basically 5-ASA which she stopped taking according to your sig. As you say she isn't feeling well (blood test inflammation markers don't have to be conclusive about inflammation levels). Have immunosuppressives and/or biologcs to get to complete remission been discussed and dismissed?
04-19-2013, 05:25 PM   #18
Devynnsmom
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She was on Pentasa originally, but went into a flare when my Mom was diagnosed with cancer and passed away 4 weeks later. Then they switched to Mezavant which never worked. They decided to try Sulfasalazine because it has advantages when there is joint pain. It was working well until she started being bullied in school. We tried probiotics and didn't notice any change so we stopped. We are talking about trying another pro biotic, although the GI says its really not necessary, but the family dr wants us to.
04-19-2013, 06:41 PM   #19
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Hey Devynnsmom
Just wanted to let you know,I also suffer from low hemoglobin, I have had 3 blood transfusion this year so far, mine is due to a sever iron deficiency, I'm starting iron infusions this month, I also self inject b12 every week, I'm on vitamin d 10,000 iu per day, my daughter also has low hemoglobin but she suffers from a different disorder, we both have been as low as 70g/l, she also has been infused 8 times, she is 6 years old. I know how worried you are, I've Been standing in your foot steps before, call and ask as many questions you can, someone will tell you something, good luck and all the best to you and your daughter.
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04-19-2013, 08:11 PM   #20
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I would want to know level for iron,b12 and folate.

Ask you daughter whether there was any pain before the bulling started. Sarah has explaining how things slowly built up for her. Doctors told us it was all due to stress.

But she now says she had this constant very low level stomach pain it was not enough to stop her doing any of activities.
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Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-19-2013, 08:46 PM   #21
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Mama&Mac, Thank you I called and left a voice mail and called and left a msg for the on call. Her hemoglobin has never been low before. We just started Vit D 1000mg daily about 2 mos ago.

Catherine, I have kept a journal of all pains, symptoms etc for years. Daily since Jan of 2012. She had pain now and again before the bullying. But she seemed to be doing SO well. The pain (and mouth ulcers etc) started right around the time the bullying started. I figured it was stress, and when her NP said all her tests were completely normal I figured it HAD to be stress. Devynn has different pain since yesterday. She has a pain in her belly that feels muscular (in her words) and tonight her knee is aching again School has gone very well all week.
04-20-2013, 05:05 PM   #22
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Hey Samantha... My heart aches to hear when things start componding with one of our kids... I know that stress plays a huge part when Alex doesn't feel well.. I pray that this will all pass over FAST! (((hugs)))
04-20-2013, 05:12 PM   #23
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Champsmom, Thank you
04-20-2013, 07:53 PM   #24
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Are you able of get copies the actual test results and post them along with the range. She is not consider to have anemia as hemoglobin level will be in the range for the lab used

The more thing is how much the hemoglobin level has dropped and over what period.
04-20-2013, 10:18 PM   #25
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Has she had any blood, black or unusual stools? It might be microscopic GI blood loss at those rates. If she's getting weekly bloods, I'd wait and see what happens next week - to see if it was transient. If it persists, I would want to know the other indices: are the red blood cells big or little? How about the iron levels and B12... I hope your nurse has some answers for you Monday morning.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
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04-20-2013, 10:30 PM   #26
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Catherine, I asked the nurse for copies. I can request them from the hosp, but it takes time so I has asked her to just email them.

Carol,Thank you. She said her iron, B12 were good. She didn't mention red cells. She better have answers Monday! I'm not happy waiting all weekend.
04-22-2013, 08:29 AM   #27
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*UPDATE* I spoke to her NP this morning. She apologized and said when we hung up she got called for an emergency. She said her hemoglobin isn't dangerously low, its 116 and she said normal is 120-160. But its low, so she knows something is going on. Her ESR is 2, CRP is 1, Albumin is 42. The HLA B27 and Alpha something are pending. She said her Vit D was 61 in Jan and the results of that are not in with the rest of her results and she's not sure why. She is going to talk to Devynn's doctor who will be in Wed and ask what she thinks they should do.
Devynn fell down yesterday when she was out playing with her friend. She landed on her elbow. We went to emerg because I was SURE it was broken. The swelling made it look deformed. But they xrayed and said they don't see an obvious fracture, but that kids have something like 9 growth plates in their elbow and its really hard to see unless its a very obvious fracture or break. She is very swoolen, black and blue and in a lot of pain. They said of she's not feeling at least a bit better in 24 hours and we haven't got a call from ortho, bring her back in. She didn't sleep all night.. tossing and turning. It never ends.
04-22-2013, 10:19 AM   #28
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Poor girl! Hope the arm feels better soon! Hope they bandaged it up to keep it still and gave a sling. Even if not broken it will need support for a little while.
04-22-2013, 10:27 AM   #29
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Wow! Great ESR and CRP. Hgb could be considered normal for age, or only slightly low. Hope her elbow feels better and isn't anything serious.
04-22-2013, 01:32 PM   #30
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Sorry to read about Devynn's elbow . I hope it isn't broken
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