low iron and hemoglobin

My Daughter has always struggled with low iron. She's presented as anemic since first being diagnosed about 15 years ago now. She's gone through several different types of iron supplements, but they've always given her severe constipation, on top of the normal constipation she's had with having Crohn's.

Today she went to the Doctor for an unrelated minor issue, and they reviewed her recent blood work. Her iron was extremely low, and so was her hemoglobin. I believe they said her iron was at 3(?). They couldn't believe she could even be functioning, but she works full time, and always tired. Everything else blood work wise was perfectly fine.

The Dr. is going to consult with her GI regarding an iron infusion now. Anyone have any experience with going that route? I've heard that there's a new iron spray that doesn't affect the digestive tract?

In the past I've seen several on here & in the UC forum have Ferinject infusion with good results. Oral iron is tough on most people & the constipation it causes can really do a number on someone with either crohns or UC. Her number is really low & she may need an infusion, it generally takes a week or so for the number to come up after an infusion. There was a member on here that used a spray but I never heard if it worked. It may be helpful for someone that's a tad low & has oral recommended.

Let us know what the drs decide.

Thanks for the replies everyone. Just a minor update. She did get a call from her IBD nurse, who discussed her blood work with her. They aren't necessarily suspected microscopic bleeding, but want to rule it out, so having a fecal test first, and will likely want to do a lower scope, as she hasn't had one in over 10 years.

The nurse did say, that she could benefit from an iron infusion, but here in Canada, our health care system won't cover it, unless you can prove that OTC/oral iron can't be taken, or isn't effective.

Many rave about our health care here, but there are all kinds of problems with it. If you're a drug addict, you can get free methadone for the rest of your life. If you overdose, free narcan. They hand that out like candy to people who've never remitted a tax dollar in their life. Need an iron infusion? Sorry, out of luck. Also, it's extremely expensive to pay for it yourself, so that might not be an alternative either.

Sorry for the rant, I usually try not to go down that road. Thanks again to everyone for the replies.

My iron and ferritin have always been low. But now when I go for my remicade infussions I also get an iron infussion. There are no side effects like constipation. And my level is now a 13 after the 4th infussion. Now I wish I could just keep my potassium and b2 b6 b12 up as well as D. I'm dealing with malabsorbtion. Which has now caused peripheral neuropathy. Sorry getting off subject. I hope the iron infussions help your daughter as well as it helped me.

Hey Maranda,

Been awhile, hope you're doing well. Thank for the advice regarding the iron spray and infusion. Even though she's had iron supplements in the past, they need a current result of the use of an oral iron. She's always had to go off of any iron due to severe constipation issues. She's been on this new one for a couple of weeks, so probably too soon to tell, we'll just have to wait it out.

Thanks also for the tip regarding tooth staining. If she does end up getting the spray, I'll be sure to let her know about that. The spray seems to only be available in the U.K., but readily available via Amazon, so we'll see what happens.

Thanks again Maranda,

(Yes, it's Tom), good memory. Appreciate the tips on the spray dosing. It looks like she's going to persue the infusion route, as she's been on an oral for a few weeks now, and sure enough, she's totally backed up.

We were at first told that an infusion can be quite expensive here, but found out that it's $85 (Canadian). I know you're in the U.K., so that's about 50 pounds. Not too bad after all.

We'll see how things go in the coming weeks, I'll post back after we get some news on that front.

I have ongoing problems with ferritin and energy levels. My ferritin was 2.7 a couple years ago and I received an iron infusion. Had no issues or side effects. My level rose to 300 but over a few months declined quite a bit. I now take an iron supplement suggested by a naturopath that causes no constipation or digestive issues and is easily absorbed. It is called Ferrochel chelated ferrous iron by Designs for Health. A similar product would be one derived from carbonyl iron. These are much better than what you would find in a local drugstore in the US. Would also like to note that although I had no issues with the iron infusion I have a friend that had a bad reaction. If your daughter ends up getting an infusion make sure someone sits with her especially at the beginning. Hope she feels better soon.

Hi,

It takes two weeks for an iron infusion to make red blood cells, so I also had a blood tranfusion to tide me over. An iron infusion takes about 6 hours, but she will feel better once it does its job. My iron levels have been steady since Remicade and now Humira.

Julia

Thanks Julia,

Not sure why we have to jump through hoops in Ontario Hopefully once the GI pushes things along, we'll hear something soon.

Update: Just got word today that my Daughters iron infusion is booked for next Thursday. I'll keep you posted. Thanks to all for the input.

73 Monte,

I hope all goes well for your daughter. The infusions take awhile to "kick in" though so she will probably still feel tired and out if sorts for about 2 to 3 weeks. Did they schedule her for a scope to see what is causing the low iron? Is she still taking her Remicade?

You are both in my thoughts and prayers.
Clo

I was going to start a thread on this but will just post here.

I too have been needing iron infusions often. After having surgery I know it is low now and I will see a hemotologist soon and most likely get an infusion again. I feel GREAT after an iron infusion like so strong. My will and drive come back alive. I can breate easier, and sleep good. I often fall asleep during the infusion like a deep sleep that is just so nice and get upset when they wake me up to tell me its finished I need to go home. I am like but its so hard for me to fall asleep can't I just stay here a while...

I can tell you that I do believe the Anti-Tnf meds (I use humira) do mess with your iron in some way.
I don't know how or why and nobody has ever helped me figure this out but just keep that in mind.

Anyways I was going to post about B12 here. I had surgery so my body does not absorb b12 orally at all I have been doing injections for years. I have noticed something over the past year though.

I always get my B12 checked and it's so high they can't read it. It just says like greater than 2000 which is off the charts.

But if I don't do the injections twice a week then I start having really awful depression. I can't sleep. I feel tingly in my feet and toes. I feel weak, and my crohn's flares up making it hard to get back under control. I just don't understand at all. My doctor says my levels are fine too high actually.

I asked many "what will happen if I keep taking it like this"?

They all say "I don't know none of my patients do that"

It does not seem to matter the dose either. I can take half the dose needed I can take 1/4 the dose needed and I still have great results. But going a week without taking it at all and yep I can't sleep I have restless leg and I feel very depressed and sad.

I KNOW it is B12 too. about an hour after an injection BAM I start to feel positive again my mood lifts up I am happy to be alive.

I order the stuff online without a prescription. It is not expensive at all about 15$ for a 10ml concentrated bottle that has 20 normal dose shots in it with an expiration of usually 2 years on the bottle, but sometimes only one. It just takes about 2-3 months to get it is all. So I stay very well stocked up on it.

It is almost as if I can take an antidepressant.... or I can do B12 injections.
Having done both I know which is better.

I even tried taking the stuff every day and I feel great doing that but I am just concerned with everything the doctors say. However when I start reading about it online I don't worry no more about what I am doing. So I take it every 3 days sometimes every two days all depending how I feel.

Getting the needles for it used to be the hardest part. Most pharmacies won't sell them to me. They want to know why I need them and then they hit me with but you should only need that once a month. And then they all insist I use this big large needle that makes a hole in my leg. I like the little insulin needles injecting it just under the skin not going deep to the muscle. I just order the needles from amazon now without any hassle whatsoever. I don't have to explain anything to anybody when I do that, and I am very clean with alcohol on the top of the vial then on my leg.

Sure you can get it online I get it from B12direct.

Google it and you will find the place.

Biggest problem is the waiting 2-3 months to get it.

The B12 does come from Thailand which may or may not bother you. I have not had any problems and have been buying from this same place for several years. I used to get it within 4 weeks but now with everything going on I ordered some in August and just got it last week along with several emails from the website telling me about the delay.

There is alot of stuff out there about B12 on google very much worth learning about, but I remember what my pediatric g.i. told me many years ago after my first surgery. If I did not do these injections I would go insane, and that just stuck with me.

Even normal healthy people can have trouble absorbing it from diet. Meds like PPI or acid blockers will cause B12 not to digest properly so it can be absorbed in the part of the intestines I no longer have. If I am not getting it from diet along with many other IBD patients where is it coming from?