Iron IV

[Chiron]

Sorry I shouldn't say there is no ideal solution. The transdermal approach above is certainly worth a try.

 

[Learner1]

I just checked with the very experienced IV nurse at my doctor's office. She says the kind they give that gives the fewest reactions is Venofer. But, she says some patients do better with Ferrlecit.

Would either of these be a possibility?

 

[Chiron]

I just checked with the very experienced IV nurse at my doctor's office. She says the kind they give that gives the fewest reactions is Venofer. But, she says some patients do better with Ferrlecit.

Would either of these be a possibility?

Venofer is the one I was given.

 

[Learner1]

Well then ask if you can try the other one?

 

[Gingergrrl]

Iron is something you want to get right. Though you definitely need a minimum amount for mitochondria and other things to work properly, too much can be damaging to your organs.

I am now taking 25 mg of iron per evening with food. In your experience, would you consider that a pretty low dose that would not be damaging in any way?

I have anemia of chronic disease...

I have heard this term in some other posts but struggle to understand it. If someone is low iron and borderline anemic, how does the doctor determine if you have "anemia of chronic disease" vs. another kind of anemia? In my case, we did testing that ruled out "pernicious anemia" but I remain confused about the other types.

She says the kind they give that gives the fewest reactions is Venofer.

The brand that my MCAS doctor said he would only have patients try in the hospital (b/c of potential anaphylaxis risk) was Venofer. But I am sure that many people do great on it (and I have never actually tried it, or any iron infusion, myself).

 

[Learner1]

I am now taking 25 mg of iron per evening with food. In your experience, would you consider that a pretty low dose that would not be damaging in any way?

If you are taking iron, your levels shoukd be monitored, as there is variation in how individuals absorb it.

I'm assuming you mean 25mg of elemental iron? That seems like a reasonable dose. Here's a discussion about dosing:

https://www.mdedge.com/internalmedicinenews/article/106457/endocrinology/do-we-give-too-much-iron

I have heard this term in some other posts but struggle to understand it. If someone is low iron and borderline anemic, how does the doctor determine if you have "anemia of chronic disease" vs. another kind of anemia?

Besides measuring serum ferritin, you'd want to have an iron panel and a CBC which would include hemoglobin. According to the Mayo Clinic, certain diseases — such as cancer, HIV/AIDS, rheumatoid arthritis, kidney disease, Crohn's disease and other chronic inflammatory diseases — can interfere with the production of red blood cells. This is known as "anemia of chronic disease" ehichbid different than having low iron.

In my case, we did testing that ruled out "pernicious anemia" but I remain confused about the other types.

Pernicious anemia is not about iron, its the inability to properly absorb vitamun B12, usually because of lack of intrinsic factor in your intestines.

The brand that my MCAS doctor said he would only have patients try in the hospital (b/c of potential anaphylaxis risk) was Venofer. But I am sure that many people do great on it (and I have never actually tried it, or any iron infusion, myself).

I've seen many people get it safely in a well-supervised clinic setting, I just didn't know the product name. Of course, with your MCAS and super sensitivity, it makes sense for your doctor to have an abundance of caution.

 

[Chiron]

I have heard this term in some other posts but struggle to understand it. If someone is low iron and borderline anemic, how does the doctor determine if you have "anemia of chronic disease" vs. another kind of anemia? In my case, we did testing that ruled out "pernicious anemia" but I remain confused about the other types.

You can read the Wiki:
https://en.wikipedia.org/wiki/Anemia_of_chronic_disease

Basically there are two aspects to it.

1) In the presence of infection, the body stops absorbing iron and sequesters free iron into ferritin. All the iron gets locked up, basically, and won't allow anymore into the body. It's because most pathogens feed off iron.
2) If there is strong immune activation, then the bone marrow will favour the production of immune cells over RBC, so the RBC level drops, even if iron levels are normal. This is usually in response to a major inflammatory event where the immune system is in the process of inflammatory cascade (like a bowel flare).

Also... unrelated... Crohn's disease damages the small bowel and that prevents the absorption of iron plus a lot more.

 

[keenly]

Funny you mention that... I did read some of her (his?) articles already. The problem is that she doesn't give a real strategy for getting iron that I can use. I have anemia of chronic disease... my inflammatory cycle has shut down all iron absorption. It's not really pathogen driven at this point. I know this because in 2016/17 I had an 11 month period of remission and my bowel healed. My iron numbers started to go up on their own. Then I flared again and it all went to hell.

I don't absorb iron from food and can't tolerate iron supplements, so I don't know what else to do. In May my blood got so low they had to give a blood transfusion, which is disgusting. I would much rather accept the risks of IV iron than receive someone else's blood... which has who knows what in it.



My symptoms always get worse if I artificially raise my ferritin levels. If my body doesn't want to accept iron the natural way then I trust that wisdom. The problem is that my hemoglobin gets so low that I start having heart problems, so it really does need emergency intervention. My doctor offered iron injections which are smaller amounts, but because I'm fair skinned there is a risk that the injection could leave permanent tattooing on the skin if the injection leaks into the epidermal layers from the muscle.

There's just no ideal solution really.

The IV iron seems really irritating to my flares. Getting iron during remission times is no problem but during my flares seems to cause problems. I still feel like crap and now my bowels are bleeding even more, which defeats the purpose.

I'm so fatigued on top of it. My CFS is in full gear.

By the way it was iron sucrose I received, which is apparently the safest one. They don't do Cosmofer and all those high dose weird ones here in Canada.

Morley explains an Iron problem is really a COPPER PROBLEM. Supporting the enzyme that transports copper can help.

 

[Gingergrrl]

I'm assuming you mean 25mg of elemental iron? That seems like a reasonable dose. Here's a discussion about dosing:

I actually am not sure if it is "elemental iron" and am still very clueless on this whole topic! It is called "Comfort Iron" (from Vitamin Shoppe) and says that it is 25 mg of "Ferrous Bisglycinate Chelate". Is that elemental?

Besides measuring serum ferritin, you'd want to have an iron panel and a CBC which would include hemoglobin.

My Endo did all of those test (iron panel, ferritin, and CBC that included hemoglobin). I posted all of my results in another thread re: my Endo appt (and am going to reply to your questions to me in that thread shortly) so I don't take Chiron's thread too off-track!

According to the Mayo Clinic, certain diseases — such as cancer, HIV/AIDS, rheumatoid arthritis, kidney disease, Crohn's disease and other chronic inflammatory diseases — can interfere with the production of red blood cells. This is known as "anemia of chronic disease" ehichbid different than having low iron.

Thank you and that was what I thought it mean (so I assumed I was in the chronic disease category) but some of my results don't match the link below (from Wiki) so I am not sure which category I am in?!

Pernicious anemia is not about iron, its the inability to properly absorb vitamun B12, usually because of lack of intrinsic factor in your intestines.

True and we tested it at the time b/c I was also chronic low B-12 & Folate (before I found a good supplement that I tolerate). But we were not sure at the time if my anemia was pernicious anemia (but now we know it is not).

You can read the Wiki:
https://en.wikipedia.org/wiki/Anemia_of_chronic_disease

Thank you for the link. From your link from Wiki:

While no single test is reliable to distinguish iron deficiency anemia from the anemia of chronic inflammation, there are sometimes some suggestive data:

• In anemia of chronic inflammation without iron deficiency, ferritin is normal or high, reflecting the fact that iron is sequestered within cells, and ferritin is being produced as an acute phase reactant. In iron deficiency anemia ferritin is low.[4]
• Total iron-binding capacity (TIBC) is high in iron deficiency, reflecting production of more transferrin to increase iron binding; TIBC is low or normal in anemia of chronic inflammation.

I read the link very carefully and compared it to my results from my Endo but I don't seem to clearly belong in one category (as usual). I bolded the parts where I match. My ferritin is low (22) which matches with "iron deficiency anemia" but my TIBC is normal (275) which matches anemia of chronic disease/chronic inflammation. But my iron saturation was flagged as low (13) although I am not sure where that fits into the puzzle?

Also... unrelated... Crohn's disease damages the small bowel and that prevents the absorption of iron plus a lot more.

Do you have Crohn's disease @Chiron? Sorry if you explained and I missed that part. I know you said you cannot absorb iron but I was not sure if that was the reason why.

 

[Chiron]

I read the link very carefully and compared it to my results from my Endo but I don't seem to clearly belong in one category (as usual). I bolded the parts where I match. My ferritin is low (22) which matches with "iron deficiency anemia" but my TIBC is normal (275) which matches anemia of chronic disease/chronic inflammation. But my iron saturation was flagged as low (13) although I am not sure where that fits into the puzzle?

What you read is only a guideline, it's actually very hard to differentiate. I've been to naturopaths, MDs and functional medicine doctors. They all have different ideas about what the different readings mean. Another thing that should be included is transferritin.

Low iron saturation can be due to many things... even something as simple as lack of nutrient co-factors (like ceruloplasmin derived from copper). It could be because hepcidin is sequestering iron so there is less to transport, which would be reflected in higher ferritin. However, if you have iron deficiency and anemia of chronic disease, then the sequestered ferritin numbers will be low -- which will cause confusion.

What are your hemoglobin levels like? Are your RBC normal in shape and size?

Do you have Crohn's disease @Chiron? Sorry if you explained and I missed that part. I know you said you cannot absorb iron but I was not sure if that was the reason why.

Yeah I have Crohn's + CFS. My terminal ileum is damaged so I don't absorb iron or B vitamins too well.

 

[pamojja]

I actually am not sure if it is "elemental iron" and am still very clueless on this whole topic! It is called "Comfort Iron" (from Vitamin Shoppe) and says that it is 25 mg of "Ferrous Bisglycinate Chelate". Is that elemental?

'elemental iron' refers to the iron part of a molecule. Non-iron would be the bisglycinate part of that total ferrous-bisglycinate molecule.

To find out how much elemental iron usually the ingredient label states, for example:

per serving:
Iron (as ferrous bisglycinate) 15 mg

if the weight is given for the whole molecule/compount, one has search online how much elemental iron is contained in ferrous bisglycinate.

Hope this helps.

 

[Gingergrrl]

What you read is only a guideline, it's actually very hard to differentiate. I've been to naturopaths, MDs and functional medicine doctors. They all have different ideas about what the different readings mean.

I figured that different doctors would disagree on what the numbers mean so this is not surprising to me!

Low iron saturation can be due to many things... even something as simple as lack of nutrient co-factors (like ceruloplasmin derived from copper).

It's so bizarre but for all the tests I have had in 5+ years of being sick, no doctor has ever tested me for copper (and I have never asked for this test). Is it very important? (sorry if stupid question)!

However, if you have iron deficiency and anemia of chronic disease, then the sequestered ferritin numbers will be low -- which will cause confusion. What are your hemoglobin levels like? Are your RBC normal in shape and size?

My hemoglobin is usually flagged as low but this last blood test from my Endo, it just barely made it into the range at 11.2 (and the bottom of the range is 11.1). It is often under 11 but I have never seen it go under 10 which is why I labeled it as "borderline" anemia. My RBC's and hematocrit are usually flagged as low, too, but this time they also just barely made it into the range (hematocrit was 34.2 and the range starts at 34.0).

I am not sure if my RBC's are normal in shape and size (only because I am still learning about this whole topic). On my last test, the "RDW" was flagged as high at 16.5 and the top of the range was 15.4. I had absolutely no idea what this meant but it stands for "red blood cell distribution width". Several people explained it to me in another thread and I did not retain all the info but I think it meant that the size of the RBC's were abnormal (I guess b/c of low iron or anemia)?

Yeah I have Crohn's + CFS. My terminal ileum is damaged so I don't absorb iron or B vitamins too well.

Do you have to do B-12 injections or infusions? I do not have Crohn's but my levels run low on everything (Vit D, Iron, B-12, Folate, Potassium, etc) without supplementation. I suspect I have some kind of malabsorption problem from having MCAS but really don't know if this is the true cause. I am now taking 10,000 IU's of Vit D b/c with 5,000 IU's, I could not even maintain it at 30 (just as an example).

To find out how much elemental iron usually the ingredient label states, for example: per serving: Iron (as ferrous bisglycinate) 15 mg

The only thing it says on the bottle is 25 mg and I don't know how to do the translation (or whatever it is called)? I know my Endo told me to take 25 to 30 mg so I am assuming it is the right dose?

 

[pamojja]

The only thing it says on the bottle is 25 mg and I don't know how to do the translation (or whatever it is called)?

If it says 25mg of iron = it's the weight of the iron,
if it says 25mg of ferrous bisglycinate = you have to google for it's actual iron content

 

[Gingergrrl]

If it says 25mg of iron = it's the weight of the iron,
if it says 25mg of ferrous bisglycinate = you have to google for it's actual iron content

The bottle says "Iron = 25 mg" and that it is 139% of Daily Value. Then below that it says it is from "Ferrochel" or "ferrous bisglycinate chelate". So I would assume that means the iron itself is 25 mg?

 

[pamojja]

So I would assume that means the iron itself is 25 mg?

Exactly!