Did Iron Infusions Help You? Wanting To Hear People's Experiences...

[Bane808]

Hi everybody,

 

I'm very curious about people's experiences with iron infusions. My understanding is that iron deficiency anemia and/or low ferritin levels is very common in Celiacs, in fact it may be only telltale sign for some to actually get tested for Celiacs.

 

I myself have a lowish ferritin level of 18 ng/mL but normal Hemoglobin, Hematocrit, MCV, and MCH values. From what I've seen, >50 ng/mL is preferable, even higher in some cases to prevent the typical iron deficiency symptoms like fatigue, shortness of breath, etc. I've been doing research online regarding people's experiences with the iron infusions. Often times much is said concerning how the iron infusion works, people's experiences in the clinics while getting the infusion. But a lot is left out about how people are feeling later on i.e. 3, 6, and 12 months down the road. 

 

What are the typical results one can expect? I understand often times it takes a while to see improvements but did anyone notice any substantial increase in energy, depression/anxiety, physical fitness, etc? Or on the flipside, did anyone resolve their iron deficiency but did not see any improvements?

 

Thanks in advance. This is something I'm really interested in hearing. Good and bad experiences. I guess for my own sake I'm wondering if iron infusions are worth it down the road. My doc had me on ferrous sulphate tablets 260mg daily for a month, but I really didn't see any improvements and all it did was make me very constipated and bloated.

[Karli bose]

I am not sure about iron deficiency , yet to check mine . I got diagnosed with celiac last year September ,symptoms were severe acid reflux , bloating gas and shortness of breath , I do have vitamin d deficiency I need to check my iron too and hemoglobin and see if any supplement can help me with this sortness of breath

[cyclinglady]

At the time of my celiac disease diagnosis, I was severely anemic and my ferritin level was a 2. I did not opt for even blood transfusions. Instead I went on a strict gluten-free diet. Within months along with iron supplements, my ferritin level increased and my hemoglobin improved. I have Thalassemia as well so that compounded my anemia issues.

I am not a doctor, but your best bet is to find the ROOT cause of your low ferritin levels and anemic-type symptoms. Iron infusions just sounds like a bandaid approach. Look for a long term solution.

[cyclinglady]

I am not sure about iron deficiency , yet to check mine . I got diagnosed with celiac last year September ,symptoms were severe acid reflux , bloating gas and shortness of breath , I do have vitamin d deficiency I need to check my iron too and hemoglobin and see if any supplement can help me with this sortness of breath

Please do not take iron supplements until your doctor has checked your blood levels (CBC). Too much iron can be as harm as not enough. Your doctor should also check for other vitamin and mineral defiencies because you have celiac disease.

[Galixie]

I have not had an iron infusion (the IV version of iron), but I have had an iron injection and I am happy to describe that experience if it will be helpful.

 

To start off I will point out that I had a form of anemia that doesn't respond to oral supplementation and that it took me about three years to convince a doctor to actually bother giving me an iron injection to address my continuing symptoms. I also have B12 deficiency. The injection I received included 1ml of iron and 1ml of B12 injected into my hip using the z track method (a method that keeps the iron from causing a permanent stain/tattoo at the injection site). (Z track method is not needed for iron infusions which is one of the reasons infusions are more popular than injections.)

 

The injection itself was about as painful as an injection normally is, however soreness at the site lingered for about a week and caused an adhesion (I think that is the word) which feels like a lump at the injection site. It has shrunk with time (I had the injection about 2 months ago) but is still there.

 

It took about two weeks for me to actually feel a benefit from the injection (which makes sense considering how long it take the body to generate new blood cells). When it really kicked in, I felt increased energy and no dizzy spells or weakness for the first time in a long time. I was told at the time of the injection that I might need another one to get my levels to a good place where they will hopefully stay. I've been a bit reluctant to book another injection because my symptoms haven't become as bad as they previously were and those injections do actually hurt.

 

Obviously an infusion is a bit different. You wouldn't experience an adhesion from IV iron so you probably wouldn't have as much lasting discomfort as you would from an injection.

[Bane808]

I have not had an iron infusion (the IV version of iron), but I have had an iron injection and I am happy to describe that experience if it will be helpful.

 

To start off I will point out that I had a form of anemia that doesn't respond to oral supplementation and that it took me about three years to convince a doctor to actually bother giving me an iron injection to address my continuing symptoms. I also have B12 deficiency. The injection I received included 1ml of iron and 1ml of B12 injected into my hip using the z track method (a method that keeps the iron from causing a permanent stain/tattoo at the injection site). (Z track method is not needed for iron infusions which is one of the reasons infusions are more popular than injections.)

 

The injection itself was about as painful as an injection normally is, however soreness at the site lingered for about a week and caused an adhesion (I think that is the word) which feels like a lump at the injection site. It has shrunk with time (I had the injection about 2 months ago) but is still there.

 

It took about two weeks for me to actually feel a benefit from the injection (which makes sense considering how long it take the body to generate new blood cells). When it really kicked in, I felt increased energy and no dizzy spells or weakness for the first time in a long time. I was told at the time of the injection that I might need another one to get my levels to a good place where they will hopefully stay. I've been a bit reluctant to book another injection because my symptoms haven't become as bad as they previously were and those injections do actually hurt.

 

Obviously an infusion is a bit different. You wouldn't experience an adhesion from IV iron so you probably wouldn't have as much lasting discomfort as you would from an injection  

 

 

That's great you saw some relief! I'm considering Iron Infusions B12 injections, I really don't want to be taking iron supplements for 6 months - 1 year to see some improvements in symptoms

[Bane808]

At the time of my celiac disease diagnosis, I was severely anemic and my ferritin level was a 2. I did not opt for even blood transfusions. Instead I went on a strict gluten-free diet. Within months along with iron supplements, my ferritin level increased and my hemoglobin improved. I have Thalassemia as well so that compounded my anemia issues.

I am not a doctor, but your best bet is to find the ROOT cause of your low ferritin levels and anemic-type symptoms. Iron infusions just sounds like a bandaid approach. Look for a long term solution.

Whoa, Ferritin of 2?! I'm surprised you were functioning at all, Cyclinglady. That's super low. I'm a bit surprised though you didn't opt for the iron infusions. Do you mind me asking how long exactly it took to get your ferritin levels up, what were you able to increase it to, and did you see any improvements in symptoms?

[cyclinglady]

Whoa, Ferritin of 2?! I'm surprised you were functioning at all, Cyclinglady. That's super low. I'm a bit surprised though you didn't opt for the iron infusions. Do you mind me asking how long exactly it took to get your ferritin levels up, what were you able to increase it to, and did you see any improvements in symptoms?

It took just a month or two to get my levels up enough to be able to breathe easily. Six months after my diagnosis, my ferrtin levels were a 55 and I stopped iron supplements. I think I recovered quickly since I already knew the gluten-free drill (hubby gluten-free for 14 years) -- so, not to many glutening mistakes!

I still think your doctor needs to find out why your ferritin levels are on the low side. you may have celiac disease or something else. My levels dropped because of malabsorption from undiganosed celiac disease. Plus, blood loss from 30 day periods (menopause and having a hypo thyroid) will do that to you!

[cap6]

I am five years gluten free and take iron supps of 325mg 3x's per day for past year (plus ). I eat a lot of iron rich foods as well. My doctor said that low iron is very common with Celiac and that it is quite possible I will always be on some form of iron supp. Was also on b12 injections for about two years. Doctor is testing me now again on my levels as once more my overall energy level is going back down. Sleep about 10 hours at night and am now back to wanting an afternoon nap. Sigh! Am reading with interest as the doctor has mentioned iron infusion and from what I have read they can be a little painful and tricky!