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08-21-2012, 09:30 PM   #1
Catherine
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Anemia

Hi guys this is a serious question.

Shoud we except anemia as normal part of having crohn. Or does anemia means that the crohn is not under control.

The only time Sarah not had anemia in the last 3 years, was nearing the end of her pred course. The anemia is now back 10.5.

She no other symptoms other anemia, but something is not right.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

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)
08-21-2012, 09:50 PM   #2
kimmidwife
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Catherine,
How old is Sarah again ?(sorry bad memory) asking because some girls are chronically anemic from mentruation or borderline anemic from their menses and the crohns could be pushing it over the border.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-21-2012, 09:51 PM   #3
EthanPSU
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I think it is normal. I had it when first diagnosed. But it is really not a big deal at all. Just a treatment of iron pills and it's gone
08-21-2012, 10:09 PM   #4
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My daughter (no crohns) has been anaemic for quite a while now... we have tested and tested, added supplements with some improvement but still anaemic and both our GP and the rheumi we recently saw said exactly as Kim said... some teenage girls have a tough time NOT being anaemic. She was as low as 9 at one time, and last test was at about 20. Not sure, just now, what the 'normal' level is but 20 was still low. She was taking Proferrin as a supplement but Kim (?) once mentioned a liquid iron supplement that is more easily absorbed. (She's not taking any supplement now as doctor wants to see the difference without the supplement.)

What does her doctor say?
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08-21-2012, 11:15 PM   #5
Thermo
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Always, your stores can drop in the flash of an eye for one reason or another and you are back to square one. After surgery I dropped to a 9.2 from 13.8 and have my first series of iron infusions on Friday. I recommend pushing for those immediately because it is going to take awhile to absorb enough to get back to normal. Low iron symptoms are just as bad as the disease in my opinion (seriously) I cannot take the 'leg crawling' and hearing my heartbeat in my ear for very long before it drives me insane. Push for the infusions as it will give you a good boost while the pills take effect, some Crohns patients always have absorption problems.
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08-21-2012, 11:19 PM   #6
Catherine
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Ethan, we been treating low iron levels with iron tablets for 3 years now with the hemoglobin levels continue to fell until dx when pred was started the hemoglobin levels increase without any increase in iron levels.

kimmidwife, Sarah is 17 year old and hasn't had a period in 18 months.

Tesscorm, gi & gp believe Sarah ferritin and transferrin sat are acting as inflammation markers. Because her colonscophy showed chronic inflammation at dx they believe her crohn has been active for these 3 years. They also believe she has no iron stores.

Results from 2 August

hemoglobin 10.5
Ferritin 31 ug/L (15-165)
Iron 5 umol/L(7-27)
Transferrin 2.2 g/L
Transferrin Sat: 9% (13-47)

Comments: Inflammation may be associated with decreased transferrin saturation and increase serum ferritin.

Purpose my question is if we get our children is remission and crohn is the cause of the anemia. The anemia should then resolve as well.

Thanks for your responses.
08-22-2012, 02:20 AM   #7
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This is something I've wondered about myself. Andrew's iron has been low for ages at around 10 or 12. I am not sure about how active his Crohn's is either as he has no symptoms (apart from a fistula which I think has been there since the beginning), no tummy pain, no toilet issues, etc. He takes the liquid iron supplement (Sytron) and it did go up a little when I remember to give him the full dose - bad mom! Haven't got the results from last weeks blood test yet.
08-22-2012, 03:29 AM   #8
Catherine
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Thermo

If the hemoglobin drop low again which in Sarah case is 9.0. They will look at blood transfusion. They won't consider iron infusion as there is some doubt as to whether the anemia is caused by low iron and it may actually be anemia of chronic disease.
08-22-2012, 07:07 AM   #9
dannysmom
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Does anyone ever see a hematologist for their opinion too? It just does not sound like a good thing to be chronically anemic.

Are doctors concerned about her not having her period for 18 months now? Is she very thin? My daughter, healthy but does so many sports she had very little body fat, also went many months without her period until finally she gained some weight and it is normal now (she is 18 too.)
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08-22-2012, 07:11 AM   #10
crohnsinct
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O is still anemic even though everything else is going well. Her doc doesn't seem too concerned but he is watching it. As long as she trends up we are good. She hasn't started menstruating yet so we know that isn't her issue. Assuming our tests have the same ranges, they transfuse around here when they dip under 7. So I am not sure anemia is necessarily always a sign of disease but you say she hasn't been "right" so may be worth a call.

How is her swimming? I know with O her swimming is as good as any blood test to let us know things aren't right.
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08-22-2012, 07:29 AM   #11
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Catherine,
I also was going to ask what Danny's mom asked. Why She has not menstruated in 18 months? Is she purposely holding off her periods with medication or is she extremely thin and so not menstruating?
08-22-2012, 07:45 AM   #12
Catherine
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Dannymom, dr believes no periods are due to anemia and body weight. Sarah was 44 kg ((96 lb) at dx and has only ever had 4 periods. We should wait another 6 months before being concerned. She was actually test for apha & beta thalamenia? as her doesnot appear to response to iron supplement as the ferritin levels were increasing and hemoglobin dropping.

Crohnsinct, I think am just starting to understand how sick Sarah was at dx. We were fast reaching the point of no return, Sarah losted almost 20 percent of her body weight in less than 2 months and was still losing over kg a week with 3 meals a day and two serves of ensure. She body was shutting down and she blood pressure was not stable.
08-23-2012, 06:21 AM   #13
DustyKat
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Now that my two are in remission anaemia has not been an issue, although it is regularly monitored due to the resections they have had.

The GI did specifically say to me in relation to my Sarah...even very low levels of inflammation that may not be apparent in blood tests can cause a slow insidious type of blood loss (not detectable to eye), much like a dripping tap...not much to speak of on a daily basis but over time it does continually dip you into anaemia. For those that are menstruating it escalates the issue.

I can well imagine that the fact that your Sarah is not menstruating is down to weight and anaemia but inflammation may also be playing a part in it and may go some way to explaining the continued anaemia as well. Just something to consider.

Dusty. xxx
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08-23-2012, 07:31 AM   #14
dannysmom
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Does she still swim competitively? If so, I am hoping she is coming to a breaking point so her body can rest more. My daughter usually had August free from her sports and she'd gain weight then. Once she stopped growing weight became better.
08-23-2012, 06:42 PM   #15
Catherine
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Thanks for the great questions and advice.

The lack of menstruaton is not consider as issue by her GP. In his words we should not be concerned for another 6-12 months. It would only cause her further isues and this stage beacuse of the likehood of it worsing the anemia.

Sarah still swims competitively and trains up to 6 times per week. These are all morning sessions between 5.00 am - 7.00 am. There will be a two week break over Christmas, long course season states in September.

Sarah has gained 12 kgs in the last 6 months and is now weights the most she has ever weighted. She weight is at the low end of normal for her height.

Even before crohn Sarah had a lot of illness in winter. This has been a good year as far has winter sickness has gone.

Your have an answered question, I was trying to ask.

Amenia is not normal, and if the crohns is well control and in remission there should be no amenia cause by crohns
08-23-2012, 09:23 PM   #16
my little penguin
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Yeah that-
DS has not ever ben anemic - but he is very young and doesn't follow most of the memos.
Hope you can get to the bottom of it.
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08-23-2012, 10:15 PM   #17
Patricia56
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Hi Catherine,

As a general answer to your question, I would agree that in this case her low Hgb may be a sign that her Crohn's is not in full remission. Have you discussed this with her doctor? What does he say?

Because, it may also be attributable to her training regimen. There has been good documentation that a substantial percentage of healthy adolescent athletes are anemic. So she might be in remission and stil be anemic due to her training regimen and her body's response to that high level of activity.

As others here know, I have kind of a soapbox about interpreting lab results in isolation. This is a good example. Prednisone elevates Hemoglobin levels which may (probably) explains why her Hgb was up when she was on it. Not because she wasn't still anemic. So as soon as the effects of prednisone stopped her Hgb dropped again.

There are actually several different kinds of anemia. The kind of anemia you are referring to is iron deficiency anemia. In the case of CD patients, this is often because they are losing blood (usually just a very small amount) and their dietary intake isn't enough to counter-act the blood loss. In this case you might also see abnormalities in RBC and platelet counts, RBC ratios (RDW, etc) and descriptors (anisocytosis, etc).

DustyKat mentioned something that the doctors call "anemia of chronic disease". This refers (as I understand it) to the fact that many people with chronic inflammatory conditions become anemic over time despite the fact that, by all other measures, they are in remission.

The thinking seems to be that, even when they are in good remission, people with these conditions have a higher level of "background" inflammation. This inflammation causes the body to use iron differently (to make WBC instead of RBC) than it would normally. Gradually over long periods of time (at least months, usually more like a year or more) ferritin levels drop and eventually H&H drop until the patient is officially declared anemic. Unless, like our GI does, their ferritin is being monitored and supplements are started when it starts to drop too low. (Ferritin is a protein that stores iron in the body)

I think at this point it would be unwise to jump to any conclusions about whether her Crohn's is or is not in remission.

It sounds as if she is doing very well from a clinical perspective. She is growing, putting on weight, training hard with no problems, has no apparent signs that she is flaring in terms of pain, bleeding, D or C.

That is not to say that she would not benefit from iron supplementation. This needs to be done under a doctor's supervision as too much iron can be very dangerous.

Ferritin is usually the first thing to fall when it is iron deficiency anemia. That is the measure that we (my son's doctor) follow and use as a guide for when to supplement and when to be looking for early signs of a flare.

So I would speak with her doctor about your concerns and ask about supplementing her.

I would also ask about measuring her B vitamin levels as low Vit. B levels can also contribute to anemia.

Glad to hear she is feeling so much better.
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08-23-2012, 10:17 PM   #18
Rachdonn7
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I have crohn's and it is not under control, still after having it for 4 years now. I've been anemic for a really long time.. Every time im hospitalized, they tell me i'm anemic. When i stand up and things of that nature, i'm always light headed, sometimes worse than others. Scary!

Does anyone know.. Is an irregular period normal with crohn's? I haven't had mine in maybe 2 months, but i usually do every month.
08-23-2012, 10:59 PM   #19
Thermo
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Since she has been dx it is most likely anemia of chronic disease. But in my opinion it doesn't make much difference as they both have the same treatment which is iron supplementation. Due to her having inflammation she is not absorbing very much which is why her Hemoglobin goes up but her stores never do because she is constantly inflamed and her Hemoglobin will drop quickly due to various things and never allow more to 'spill over' into the stores. This is why I suggest iron infusions, it allows you to quickly jump up a few points in hemoglobin as she will need to continue being on Iron the rest of her life most likely. Some people will never again get an effective iron store due to not being able to absorb enough iron. Have you ever tried these infusions? Everyone is different but I believe what Crohnsinct says as well. You do blood transfusions at 7 and iron infusions from 8-11 every doctor is different but you want to minimize exposure to other peoples blood as much as possible. But then again most doctors have never felt an 8.4 Hemoglobin before, I never wanted another persons blood so bad in my life.

http://www.aafp.org/afp/2007/0301/p671.html
http://en.wikipedia.org/wiki/TIBC
08-24-2012, 02:00 AM   #20
Patricia56
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Generally iron infusions are reserved for people with much lower Hgb levels than 10.6 although it does depend on the overall clinical situation of course.

Since her ferritin is still in the low end of the normal range, oral supplementation may be what your doctor recommends.

If you end up doing oral iron supplementation, you may want to ask your doctor for special instructions. And you could post here asking for suggestions.
08-24-2012, 07:14 AM   #21
farmerswifey
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Hope you get things sorted out x My son has just been diagnosed and he has extremely low iron and is anemic, these were his first symptoms x
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08-24-2012, 08:11 AM   #22
Catherine
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Rachdonn7, anemia can cause period to cease but as this new for you it should be reported to your GP or GI

Patricia56, thank you for your responses which have help with my understand of anemia.

Yes her anemia has been discussed with GP, and he put her back on iron tablets. It will also be discussed with her GI at her next appointment in mid September.

I have heard of sport anemia, prior to dx with crohns, we consulted a sport gp about low iron, she was not anemia then. Spend many visits to dietian, trying to increase iron in diet and learning combined eating and trying to increase weight. Also refer to paed who was more concern about her weight.

I didnot know that Prednisone increase hemoglobin. This explain the comment on her blood test. "There is a dimophic red cell picture which could indicate iron therapy or blood transfusion."

Iron deficiency anemia - doesnot quite fit Sarah, as hemoglobin is low, ferritin is low normal, and one of the other numbers on the iron studies is purpose be high but it low as well.

Anemia of chronic disease - this anemia best fits Sarah, as previous experience with iron supplement has been that her ferritin level rises with hemoglobin remains the same or fells. She has began a trial of iron supplements to whether this pattern remains the same now that underlining conditions is been treated.

There is third type anemia that looks like iron deficiency anemia and the is thalassaemia. Sarah has also been tested for this. This is a genetic order. 10% of Melbourne Greeks populations are carrier of the beta form. Anemia caused by thalassaemia doesn't improve with iron supplementation unless there is concurrent iron deficiency anemia.

She B12 level is 258, which the GP doesnot believe is low but he has agreed that we supplement with B12.

If pass patterns is anything to go her hemoglobin levels will drop to mid 9 for get any anemia symptoms other than pale skin. Hopefully the crohns is in remission and they won't go that low.

All know is when hemoglobin level were 9.1 there was no mention of iron infusions only that they would consider blood transmission but she was a very sick girl at the time and if we had got a dx they would have hospitalise began feeding using a tube into chest.

Thermo, good luck with your iron infusions wishing you a relief from your anemia symptoms. We can increase Sarah's ferritin levels with iron supplements, sadly in past in has not increased her hemoglobin but here hoping that now she is being treated for the crohns the supplement will increase the hemoglobin as well.

Again I like to thank everyone for input. Only time will tell if all Sarah's issue with anemia are a direct result of her crohns. The mild anemia is no concern, it just that low iron level, follow by anemia were the start of our journey 3 year half year looking for a cause.

Thank you for reading my long post. Please forgive my spelling.
08-24-2012, 10:22 AM   #23
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The note about dimorphic RBC is made when there are two distinct groups of RBC's This can occur following iron supplementation when a surge in production of RBC's produces a group of immature RBC's following a reduction in RBC production. There are some other explanations for a dimorphic distribution (like blood transfusion) but in this clinical picture the doctors probably ruled those out. They would also have considered the ratios like RDW to help interpret this lab result since those would help indicate the extent to which the distribution was normal or skewed.

http://www.perthhaematology.com.au/IronStudies.pdf

This is a very helpful the interpretation of iron studies. You sound very well educated on the subject already but you may find some of this information new or different than what you have seen before. For example, low ferritin, low transferrin sat % and low serum iron are all signs of iron deficient anemia. Low or dropping ferritin is considered a very strong indicator of iron deficient anemia. This is not to say she does not also have anemia of chronic disease. But if her ferritin is dropping then iron deficiency looks like it may be the most likely cause. Consulting her doctor, as you have done, is always the best course when there are unusual lab results like these.

I would also point out that under most circumstances there are additional signs that her disease is not in good remission. My son's labs are often perfect or near perfect even though he is flaring so I completely understand that labs may not be a helpful tool for some children.

But this is not the case for most kids with Crohn's.

Other lab values to consider as markers of inflammation, preferably viewed as a pattern from lab values taken in series over a period of several weeks to months/years, would include falling/low albumin, rising/elevated platelets (doctors sometimes call this the "poor man's ESR" as it is a rough measure of inflammation), high/rising ESR and CrP of course, high/rising WBC.

The WBC diff may show rising abs. monocytes and abs. lymphocytes although lymphocyte counts can be suppressed by steroids.

When doing iron supplementation, it is good to avoid giving it with dairy products within 1 hour before and 2 hours afterwards and to give it with food to reduce gut irritation. We have found it to work best in a combination of Vit. C and Vit B (called a Stress relief formula here). Iron appears to be best absorbed when these vitamins are present in the gut as well but the research on this is unclear. But our experience does support this approach.

Hope her symptoms continue to improve.
08-24-2012, 11:03 AM   #24
Patricia56
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I forgot to also say that Hgb is also affected by fluid volume. While it seems very unlikely to apply in this case, if she is drinking a LOT of fluids prior to having labs drawn then it may artificially reduce the Hgb because her blood is essentially diluted.

This is why blood needs to be drawn from an arm different than the one with an IV in it (if possible) and needs to interpreted with caution in patients who may be dehydrated or have atypical fluid volume. You can have "normal" or high Hgb lab results but actually be below normal if you are significantly dehydrated. This is because the dehydration artificially inflates the Hgb reading.
08-26-2012, 11:42 PM   #25
Catherine
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Blood test results are back.

Not quite what I expect.

Anemia is still mild.

But now showing mild lymphopenia.

I compare to results to the previous last ones when I get home.
08-27-2012, 01:18 AM   #26
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I hope things are okay Catherine.

Dusty. xxx
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