Has anyone here had an iron infusion? What do I need to know?

[gatorsmom]

I know my iron is low again. I am dragging. I have tried taking iron different ways and it always constipates me. It probably has something to do with my IBS. At my yearly physical my doctor recommended an iron infusion. After struggling with foods high in iron and vitamins and stool softeners for a year I think I might go for the iron infusion. I see my doc again next week.

Has anyone here gone through this? Do you recommend it?

[megs4413]

I've had two. It really is amazing after years of struggling to try to bring the numbers up orally to just have it "fixed" so quickly after an infusion. I didn't really have any side effects that I could tell the first time, but the second time I had some kind of minor allergic reaction and I'm told that that's possible. It wasn't serious. I got IV benadryl and it went away just fine, but I'm not able to have any more infusions because of it. Bring something to do, it's boring. Will you be going to an infusion clinic? Be aware that you may be in there with chemotherapy patients and that can be a little intense if you've never seen it before. All clinics are different, so there's no real telling what you would be walking into in terms of that, just something to be aware of.

ETA: In my case I've needed multiple because the heavy bleeding of my periods has kept putting a high demand on iron for me and I have an underlying metabolic problem that keeps me from absorbing as much through my gut as I need to absorb to stay on top of it that way. You may be able to just have one infusion, IDK!

[essnce629]

Did you have your iron infusion yet? What was your ferritin number? I just scheduled an appointment today with a hematologist to see if they recommend iron infusions for me. I've been taking 500mg of elemental iron a day for the past 6 months and still feel exhausted and with little change, except that I'm no longer freezing and out of breath. My ferritin did move from 8 to 34 in the first two months after starting oral iron, but it the last two months it's only gone from 34 to 36. My doctor wants it to be in range of 70-90 and said I won't start feeling better till it's over 50.

I found this blog to be good at explaining what to expect when getting an iron infusion. There's several links containing her updates after several infusions.
http://carikay11.hubpages.com/hub/intravenous-iron-infusion-and-me

[sunshine873]

Just saw this post. I get them, actually I just had the 2nd in a 3 round series today! I agree, it is amazing to see #s come up so quickly, when taking iron orally has done next to nothing for me (other than make me feel miserable.) the infusions are very low-drama. It takes anywhere from 15 minutes to a few hours depending on the type of iron ordered. As for side effects, I get a little tired and sometimes a tad achey the first day, but after that I feel so much better! There are lots of different kids of iron. I think most Drs default to Venofer, which I've had a few times with really good results.

[magnoliaparadise]

My friend needed them - what I hadn't known before she took infusions was that it takes some time for them to work (at least for her). I think she had five or six and didn't feel better until a little after the last one.
Good luck!

[Melaine]

Subbing. I am terrified of the supplements bc of my stomach issues. I haven't started them bc I am worried about constipation.

[Mommaof3]

Subbing. I am terrified of the supplements bc of my stomach issues. I haven't started them bc I am worried about constipation.

I take this, it is plant based and does not constipate me at all! Love it!
http://www.vitaminshoppe.com/p/megafood-blood-builder-90-tablets/mf-7060

[Simon]

I take this, it is plant based and does not constipate me at all! Love it!
http://www.vitaminshoppe.com/p/megafood-blood-builder-90-tablets/mf-7060

I will second this recommendation. We have a friend who uses this for herself and her son with great success. It is far more gentle and effective she says, than the typical ferrous sulfate.

[essnce629]

Subbing. I am terrified of the supplements bc of my stomach issues. I haven't started them bc I am worried about constipation.
I haven't had any constipation issues even on a mega dose of 500mg a day. Probably because I take a daily 400mg magnesium supplement. Magnesium is a natural laxative. So I'd recommend combining magnesium with your oral iron when you decide to take it.

[gatorsmom]

I haven't had any constipation issues even on a mega dose of 500mg a day. Probably because I take a daily 400mg magnesium supplement. Magnesium is a natural laxative. So I'd recommend combining magnesium with your oral iron when you decide to take it.

I've been meaning to respond to this. For the same reason as a pp, I decided not to do the infusions. I know that some people have great luck with them but after a little research I found that they can cause migraines and tummy troubles. I already fight my IBS and migraines so I'm terrified that an infusion will knock me out for a few days.

Im im going to try the iron supplement linked to above. I would like to add the magnesium but I don't know which magnesium supplement to get. When I searched magnesium there were many different types! Magnesium glycinate, magnesium citrate, etc. not sure which supplement would be best for digestive issues.

[theriviera]

My doctor recommended Mag Ox.
http://www.walgreens.com/store/c/mag-ox-400-magnesium-tablets/ID=prod6056469-product?SL_ClientGroup=1

[gatorsmom]

My doctor recommended Mag Ox.
http://www.walgreens.com/store/c/mag-ox-400-magnesium-tablets/ID=prod6056469-product?SL_ClientGroup=1

Thank you so much. This helps!

[essnce629]

Im im going to try the iron supplement linked to above. I would like to add the magnesium but I don't know which magnesium supplement to get. When I searched magnesium there were many different types! Magnesium glycinate, magnesium citrate, etc. not sure which supplement would be best for digestive issues.

I got the Blood Builder too and just started taking it yesterday along with my prescription iron and some other OTC one I'm taking.

For the magnesium, my endo said to get magnesium glycinate, so I did (KAL brand on Amazon) and then my eye started twitching which is really weird since magnesium is supposed to stop tics and muscle spasms and I've actually used it in the past (Natural Calm which is magnesium citrate) to stop an eye tic in DS1! So I stopped the glycinate one and went back to my Carlson liquid magnesium that I had been taking and immediately the eye twitch went away! So I'm sticking with the Carlson brand. This one:
http://www.amazon.com/Carlson-Liquid-Magnesium-250-Softgels/dp/B001LF39JM

Natural Calm is super popular though and is what I give to the kids. It's a magnesium citrate powder you mix with a little bit of water (hot or cold) and drink.
http://www.amazon.com/Natural-Vitality-Anti-Stress-Cherry-Flavor/dp/B00D7K1KAY

Magnesium is good for headaches too so maybe it will help your migraines. I always take an extra magnesium capsule when I get a headache, instead of a pain med.

[essnce629]

Does anyone get bone pain with their low iron? My left leg from the knee down is constantly aching and so are my forearms. It's like a deep ache in the bones, not muscle pain. I'm also getting joint pain, especially in my right index finger. I've read low iron causes lots of body aches and that most people with fibromyalgia (pain everywhere) have low iron as well. So annoying.

I personally want to just skip right to the iron infusions. It's been 6 months already on high dose oral iron and my ferritin has only risen 28 points, with almost no change in the last two months. It's got to go up another 34 points to make it to the lowst end of the optimal range and I just don't see that happening any time soon. But maybe this blood builder will work miracles! My hematology appointment is at the end of the month and it can't come soon enough!

[wendibird22]

Just wanted to share this for anyone following this post with chronically low iron. It was on my FB feed yesterday.



The University of Chicago Celiac Disease Center
23 hrs ·
Did you know? The most common sign of celiac disease in adults is iron deficiency anemia that does not respond to iron therapy. ‪#‎celiacawarenessmonth‬

[gatorsmom]

Does anyone get bone pain with their low iron? My left leg from the knee down is constantly aching and so are my forearms. It's like a deep ache in the bones, not muscle pain. I'm also getting joint pain, especially in my right index finger. I've read low iron causes lots of body aches and that most people with fibromyalgia (pain everywhere) have low iron as well. So annoying.



Thanks for the Natural calm recommendations. I just ordered that and the Blood Builder. If the Blood Builder doesn't work, I think I might have to try the infusions too. I had been keeping track of my iron intake with Myfitnesspal. I was eating 130-150% of my daily iron requirements but it's just not enough. I'm falling asleep on the sofa at 5pm again lately. So frustrating.

I don't know anything about bone or joint pain. I don't have it. I just get very, very sleepy. I also have a very difficult time dragging myself out of bed in the morning when my iron is low. It seems low iron affects the body in so many seemingly random ways.


Just wanted to share this for anyone following this post with chronically low iron. It was on my FB feed yesterday.

That is interesting. This isn't the case for me because I tested negative for celiac but good info for those having similar problems.

[essnce629]

Just wanted to share this for anyone following this post with chronically low iron. It was on my FB feed yesterday.

Yes, I definitely know about the low iron and celiac connection. DH's dad, who was diagnosed with celiac disease 30 years ago, was very anemic when he was first diagnosed. Also, DH just had his physical last week and I had him ask for the celiac antibody test and to get his ferritin levels tested as well. He actually tested negative for any celiac antibodies, but his ferritin seemed low for a man. It was only 55, and everything I've read said that a healthy man's ferritin level should be 100-150. My doctor said I'd feel like crap till my ferritin got over 50, so DH is just barely above that at 55. He has also had headaches daily for like 6 years now which I read could be related to low iron as well. So I started giving him the blood builder as well. I just sent his DNA test off last week, so we'll see if he has one of the celiac genes like DS1 does.

I don't have either of the 2 celiac genes, but I did have two that can lead to gluten sensitivity. So I don't think I can have celiac disease, but I think I'll ask for the antibody test next time I get labs done anyways.

[wendibird22]

Yes, I definitely know about the low iron and celiac connection. DH's dad, who was diagnosed with celiac disease 30 years ago, was very anemic when he was first diagnosed. Also, DH just had his physical last week and I had him ask for the celiac antibody test and to get his ferritin levels tested as well. He actually tested negative for any celiac antibodies, but his ferritin seemed low for a man. It was only 55, and everything I've read said that a healthy man's ferritin level should be 100-150. My doctor said I'd feel like crap till my ferritin got over 50, so DH is just barely above that at 55. He has also had headaches daily for like 6 years now which I read could be related to low iron as well. So I started giving him the blood builder as well. I just sent his DNA test off last week, so we'll see if he has one of the celiac genes like DS1 does.

I don't have either of the 2 celiac genes, but I did have two that can lead to gluten sensitivity. So I don't think I can have celiac disease, but I think I'll ask for the antibody test next time I get labs done anyways.

Are you guys eating low or no carb? That could give a false neg on the antibody test.

I tested negative to celiac too but you couldn't pay me to eat gluten any more. My health is worlds different now. There's lots of emerging research on celiac and that there may be different antibodies that current blood tests aren't created to detect. I'm curious what the next five to ten years will bringing in testing and diagnosis.

[essnce629]

Are you guys eating low or no carb? That could give a false neg on the antibody test.

I tested negative to celiac too but you couldn't pay me to eat gluten any more. My health is worlds different now. There's lots of emerging research on celiac and that there may be different antibodies that current blood tests aren't created to detect. I'm curious what the next five to ten years will bringing in testing and diagnosis.

I eat low carb, but DH definitely eats carbs, like his nightly snacking on TJ's pretzal slims and he usually eats a bagel every day when he works from home. Dinners are definitely low carb with no grains. He usually eats a chinese chicken salad for lunch and it does have little wontons on it. Not sure if that's enough gluten throughout the day to get an accurate blood test, but DS1 definitely tested positive for the antibodies without gluten loading, although I think he was eating a more gluten than DH does (because of school and just the life of a middle schooler).

[wendibird22]

I eat low carb, but DH definitely eats carbs, like his nightly snacking on TJ's pretzal slims and he usually eats a bagel every day when he works from home. Dinners are definitely low carb with no grains. He usually eats a chinese chicken salad for lunch and it does have little wontons on it. Not sure if that's enough gluten throughout the day to get an accurate blood test, but DS1 definitely tested positive for the antibodies without gluten loading, although I think he was eating a more gluten than DH does (because of school and just the life of a middle schooler).

That sounds like plenty for your DH. The recommendation for a gluten challenge is equivalent to 1 slice of bread daily for 6 weeks. Your DH is definitely getting that much :)

[gatorsmom]

I got the Blood Builder too and just started taking it yesterday along with my prescription iron and some other OTC one I'm taking.

For the magnesium, my endo said to get magnesium glycinate, so I did (KAL brand on Amazon) and then my eye started twitching which is really weird since magnesium is supposed to stop tics and muscle spasms and I've actually used it in the past (Natural Calm which is magnesium citrate) to stop an eye tic in DS1! So I stopped the glycinate one and went back to my Carlson liquid magnesium that I had been taking and immediately the eye twitch went away! So I'm sticking with the Carlson brand. This one:
http://www.amazon.com/Carlson-Liquid-Magnesium-250-Softgels/dp/B001LF39JM

Natural Calm is super popular though and is what I give to the kids. It's a magnesium citrate powder you mix with a little bit of water (hot or cold) and drink.
http://www.amazon.com/Natural-Vitality-Anti-Stress-Cherry-Flavor/dp/B00D7K1KAY

Magnesium is good for headaches too so maybe it will help your migraines. I always take an extra magnesium capsule when I get a headache, instead of a pain med.

I've been meaning to update this for a few weeks now. I've been taking the blood builder pills and Natural calm for about 5 weeks now with fantastic results. I've noticed that my energy is improving but best of all I can tolerate the iron pills! I take a little natural calm at night and in the morning in addition to my 2 daily stool softeners and NO STOMACH PROBLEMS!! :yay: Seriously, no cramping, no constipation, everything runs smoothly. And mysteriously I seem to have had fewer migraines.

Thank you SO VERY MUCH for these suggestions. Seriously, this has been such an ongoing struggle for so long, I could just hug you, Latia ! :hug5:

[swissair81]

I just finished a set of 3 ferrlecit infusions. They were fine. I didn't react to them. I feel much better and I'm not so worried about my hemoglobin being so low before I deliver.


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