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Iron Infusion After Effects

VeggieGal

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VeggieGal Contributor
VeggieGal
Posted

Hi all, after being gluten free now for about 14 months my iron levels are still very low. Is this normal and how long did it takes yours to come back better levels?

Last week I was given an iron infusion as the iron tablets don't seem to do anything. I'm due another infusion in a couple of days.

Well I still feel absolutely exhausted/breathless and wanting mid day naps. Really getting frustrated now.

Has anyone had iron infusions and if so did you have any after effects? I woke up the next day with a booming headache and now have flu type symptoms, achey my arms and legs feel so heavy, dizzy, sickly, can't concentrate and still so tired. Is this normal as I wasn't told anything by the hospital on what to expect. Thanks

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1desperateladysaved Proficient
1desperateladysaved
Posted

My iron levels improved 12-18 months gluten free.  They did initially go down after going gluten free.  (I had 30+years of symptoms)  I sure hope your iron levels will be helped from the infusion and the other effects soon gone.

VeggieGal Contributor
VeggieGal
Posted
  • Author

Thanks 1desperatelysaved :) . It just feels there's always something else going wrong. I've had blood tests to see how I'm doing on the gluten-free diet and its come back fine so its frustrating that I still have such low energy. But I guess if it took you upto 18 months for recovery it gives me some hope at least .

kareng Grand Master
kareng
Posted

There might be something else going on. You may have to bother your doc about that.

The iron helps you have healthy red blood cells that carry oxygen. Red blood cells live about 28 days. Everyday, some are dying and new ones are being made. So, if you suddenly have enough iron this past week, you have remade 1/4 of your red blood cells as healthy ones. This is the ideal but you may be a bit different. At best, in a week, everything being perfect, you would feel 25% better. The iron & red blood cells need vit C and B12 to work their best.

cyclinglady Grand Master
cyclinglady
Posted

Is it just ferritin and hemoglobin levels that are off? Have other anemias been ruled out?

VeggieGal Contributor
VeggieGal
Posted
  • Author

Thanks for explaining Karen. Looks like another trip to the docs then. I was told I was low on B12 still and I bet the caffeine I drink doesnt help with absorption. I will try cut it out and have more vit c too.

kareng Grand Master
kareng
Posted

Thanks for explaining Karen. Looks like another trip to the docs then. I was told I was low on B12 still and I bet the caffeine I drink doesnt help with absorption. I will try cut it out and have more vit c too.

Do a sublingual B12. I don't have the research handy but many Celiacs never completely get the ability to absorb b12 in the small intestines back. I trialled it and I need the sublingual. You can crunch up regular b12 tablets and stick them under your tongue but the sublingual ones have a little flavoring that makes it easier to swallow ( or actually - not swallow). :).

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VeggieGal Contributor
VeggieGal
Posted
  • Author

I take B-complex, could I crush one of them and place under tongue or does it needs to be a standalone B12? In the meantime I'll have a look for the sublingual type.

kareng Grand Master
kareng
Posted

I take B-complex, could I crush one of them and place under tongue or does it needs to be a standalone B12? In the meantime I'll have a look for the sublingual type.

I think that would work. You might look it up. I think it was on a site like Mayo that I saw that.

cyclinglady Grand Master
cyclinglady
Posted

I use the sublingual B-12 tablets even though I was not "low" on B-12.   I found that it helped some of my achy/tingling leg symptoms (I think).  At my diagnosis, my docs just told me the obvious -- take iron.  They didn't add calcium until my first fracture and after that, I've been taking advice from this forum and doing research on my own regarding other supplements.  My GP clearly doesn't want to deal with any celiac issues, but he's open to various treatments (and will research them) if I bring it up to him.  

 

I got my sublingual B-12 from Costco -- cheap (and it's gluten free).  

VeggieGal Contributor
VeggieGal
Posted
  • Author

I use the sublingual B-12 tablets even though I was not "low" on B-12. I found that it helped some of my achy/tingling leg symptoms (I think). At my diagnosis, my docs just told me the obvious -- take iron. They didn't add calcium until my first fracture and after that, I've been taking advice from this forum and doing research on my own regarding other supplements. My GP clearly doesn't want to deal with any celiac issues, but he's open to various treatments (and will research them) if I bring it up to him.

I got my sublingual B-12 from Costco -- cheap (and it's gluten free).

Thanks cyclinglady, I will take a trip to the local shop and stock up :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I take B-complex, could I crush one of them and place under tongue or does it needs to be a standalone B12? In the meantime I'll have a look for the sublingual type.

The best person to ask that question would be a pharmacist. IMHO you are going to be best off getting the sublingual. Fortunately they are not real pricey. You can continue to take the B Complex with the sublingual as B12 is a water soluable vitamin so if you do have excess from the vitamins you will just pee it out.

HavaneseMom Explorer
HavaneseMom
Posted

Hi VeggieGal,

So sorry to hear you are having bad after effects. You might already know this about iron, but I saw your name and thought It was worth mentioning. You had mentioned your caffeine intake and I was wondering if you drink a lot of coffee or tea in particular? The phenols in those drinks can greatly reduce your ability to absorb non-heme iron, the type that comes from vegetarian foods. I quit drinking tea altogether and I really think it has helped me with my anemia. I do miss tea though, but I feel much better.

Here is a quote from Univeristy of Minnesota article:

 

"Coffee and tea are widely consumed with meals or directly after meals, while some people prefer to

consume these beverages between meals. However, both beverages have a high content of phenolic

compounds, which strongly inhibit the absorption of non-heme iron. For example, a cup of tea with a

meal reduces iron absorption by about 75% depending on the amount of phenolic compounds per cup.

The amount of phenolic compounds depends on differences in the amounts, brands and steeping times

used to prepare the tea. A cup of coffee with a meal has been shown to reduce iron absorption by

about 60%."

 

Here's a link to the full article:

Open Original Shared Link

VeggieGal Contributor
VeggieGal
Posted
  • Author

Thanks Ravenwoodglass and HavaneseMom, I'll get the bilingual b12. I only have a couple of cups of tea or coffee a day as I've cut down alot but didn't know about the non-heme iron etc. Its a pain but if it helps me get some energy back, I'll quit completely. Infact just having a ginger and lemon tea right now, but must admit I love my morning cuppa tea.

HavaneseMom Explorer
HavaneseMom
Posted

Hi VeggieGal,

 

I stumbled across the info on tea when I was trying to research why my energy wasn't improving. There are lots of articles on the web about it, but my docs never mentioned it. I was drinking lots of tea throughout the day and with my meals. It's supposed to be healthy, so I saw no harm in it until I discovered it could be affecting my iron absorption.

 

From what I've read, you don't have to completely give it up though.

It's recommended that you drink it 2-3 hours before or after meals or taking iron supplements, to help improve your iron absorption. I would still drink it between meals myself, but I discovered it gives me a stomach ache, so it wasn't hard for me to give up.

I hope your energy improves soon and that the after effects from your infusion have gotten better.

VeggieGal Contributor
VeggieGal
Posted
  • Author

Hi HavaneseMom, I'm feeling alittle better today thanks but still a booming headache and tired. Got another infusion tomorrow and hopefully that's all I'll need. Yeah maybe I have my tea at the wrong times but think I'll cut it out for the time being and introduce gradually :)

Adalaide Mentor
Adalaide
Posted

I'm not sure about the flu like symptoms, but be sure to talk to them about the headache. It isn't unusual to get a headache after, I did, and it can be hours instead of right away. They tried to avoid it for me by doing the infusions more slowly, it didn't work so I just toughed it out. Just be sure to mention it to the people at the clinic or whatever where you go. My guess would be though that since you're also not feeling well that you may have just picked up a bug being somewhere that sick people go.

VeggieGal Contributor
VeggieGal
Posted
  • Author

Thanks Adalaide, I will mention it. Like you say, it may be a bug I could've picked up from the hospital. Just hope tomorrow's infusion goes better and I don't come out with something else and I feel energised to clean my house from top to bottom :)

1desperateladysaved Proficient
1desperateladysaved
Posted

I am not sure if you are vegetarian, but if you are, you probably need to take Vitamin B supplements.  It is hard to get enough from plants.

 

D

VeggieGal Contributor
VeggieGal
Posted
  • Author

I am not sure if you are vegetarian, but if you are, you probably need to take Vitamin B supplements. It is hard to get enough from plants.

D

Yeah I'm a veggie, I take the B supplements and try to eat healthy but still low on B12. I might be wrong but think mushrooms are a source pffft I'm not too keen on them :( but will try the sublingual. cheers

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