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Poor response to Iron

Tiger Lily 813

Senior Member
Messages
173
Hi there, back in Oct I was taking too much iron for a couple weeks (not realizing the danger and thinking this would make me feel better) and I ended up having terrible reactions, screwy heart rhythms, dizziness, inflammation, weird gunk in hair, and thinning hair, fatigue, cracking joints, lots of symptoms associated with iron overload.
Some of these symptoms have gotten a bit better (heart and dizziness) but I continue to struggle.
I saw 2 llmd's and they were both saying that I need to settle down about this iron incident because my ferritin is at 58 and that's a good level. It's usually around 20. I agree with them that these numbers sound ok, but given what happened, I'm wondering why my body responded in that way, where the iron is if not in my ferritin stores, and how best to rectify given my history. My doc said this may have mobilized other metals, but I haven't found any info on that.
Basically I'm wondering if anyone else had an overreaction to an iron increase like this, and what was done to feel better.
I'm taking milk thistle, turmeric, vitamin D, drinking green tea and lots of water. Not eating red meat.
I still menstruate monthly. Background with sluggish detoxification (but not significant impairment), lyme and bartonella that were reasonably treated/controlled before this issue. Although I've never been able to get my energy back to 100% which is why I was taking the iron to begin with.
Thank you and take care <3
 

Helen

Senior Member
Messages
2,243
As your ferritine was low before you were supplementing too much, I wonder about your B12 levels. If you have a B12 deficiency you are at risk for anemia. There are no reliable tests for B12 levels in tissues and brain according to B12 doctors with decades of experience from patients and research that I´ve met.

If a test result is low it´s valid, but you may have a deficiency although you have normal test results (serum-B12/cobalamin, homocystein and MMA). Maybe you already have been tested, if not I recommend you to discuss this with your doctor. As you don´t eat meat and don´t mention supplementing with B12 I get a little worried :).
 

Tiger Lily 813

Senior Member
Messages
173
Thanks Helen! I actually do eat meat, just not red meat since the iron fiasco (in an effort to avoid making iron even higher). I don't believe I'm low in B12 because I don't have cognitive issues, and I don't have emotional issues (other than getting really irritable which is likely from trying to do a ton of work while fatigued). But I will research the B12/Iron relationship. I tend to avoid B12 supplementation because it makes my bartonella more active. But I think I have ample B12 from food sources... Will look further into this!
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
It has taken me 18 months to get my ferritin level up to 29. I have some gut problems which worsened with the treatment for mycoplasma. One of the things that I have been on the look out for was iron supplements causing further gut problems. Iron can feed the wrong bacteria and contribute to dysbiosis.

Your treatments for Lyme and B may have left you vulnerable. I also hope that you get tested for heavy metals to rule that out. Mercury is what started all of this for me.
 

Crux

Senior Member
Messages
1,441
Location
USA
Copper is needed for iron metabolism. Iron will accumulate in the liver with copper deficiency.

I have iron overload, and I'm taking copper to help regulate it. Copper works both ways.

Drinking more tea has helped some of the overload symptoms.

Even though curcumin chelates iron, it also lowers the production of hepcidin, a hormone formed in the liver that regulates iron absorption. Vitamin D also reduces hepcidin.

Hope you can sort it out.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3690345/
 
Last edited:

Tiger Lily 813

Senior Member
Messages
173
It has taken me 18 months to get my ferritin level up to 29. I have some gut problems which worsened with the treatment for mycoplasma. One of the things that I have been on the look out for was iron supplements causing further gut problems. Iron can feed the wrong bacteria and contribute to dysbiosis.

Your treatments for Lyme and B may have left you vulnerable. I also hope that you get tested for heavy metals to rule that out. Mercury is what started all of this for me.
Thanks @stridor - while I haven't had many blatant digestive issues, I think some of my symptoms may be related to dysbiosis as you've mentioned. I am definitely going to work on a proper probiotic regimen and going to clean up my diet to better adhere to the alkaline guidelines. Thanks!
 

Tiger Lily 813

Senior Member
Messages
173
Copper is needed for iron metabolism. Iron will accumulate in the liver with copper deficiency.

I have iron overload, and I'm taking copper to help regulate it. Copper works both ways.

Drinking more tea has helped some of the overload symptoms.

Even though curcumin chelates iron, it also lowers the production of hepcidin, a hormone formed in the liver that regulates iron absorption. Vitamin D also reduces hepcidin.

Hope you can sort it out.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3690345/
Thank you @Crux - interesting to hear this about curcumin. Frustrating because it offers such benefits for other components of my current condition, so I think I'll continue on it, but will keep it at one a day and won't go nuts with it. I've been drinking green tea. Copper, I thought of that, but I don't think I respond well to zinc (which my doctor originally suggested to balance iron back down), and at this point I'm very hesitant to take any more metals given the sensitive state my body is in.
That's been my overall experience with all of my health issues. I'm the type that has paradox reactions, overreactions, or the same thing that helps me thrive also helps lyme thrive, etc. I'll read about all of these supplements and medicines to help me, but they make matters worse and I gave up treating myself to a degree.
I do go to the infrared sauna sometimes, but I can't tell if it's helping this situation much.
Also about copper, I thought I had a bit of copper dominance to begin with. My excess iron came about as a result of my taking too much of it, naturally my ferritin was around 20.
At any rate, thank you for these ideas. I will research over the holiday break. Hoping some time off will allow my body to do some of its own regulation that it's been meaning to do : )
 

Crux

Senior Member
Messages
1,441
Location
USA
Yea, it's better to get minerals from food in general. Since I have this mutation problem, supplementation is working better.

There are good foods with copper : chocolate, mushrooms, nuts,seeds, legumes, oysters, lobster, kale, etc. Liver is especially high in copper, but also iron.

I don't think curcumin should be a problem, especially if you respond to it.
 

Tiger Lily 813

Senior Member
Messages
173
Yea, it's better to get minerals from food in general. Since I have this mutation problem, supplementation is working better.

There are good foods with copper : chocolate, mushrooms, nuts,seeds, legumes, oysters, lobster, kale, etc. Liver is especially high in copper, but also iron.

I don't think curcumin should be a problem, especially if you respond to it.
@Crux chocolate and lobster sounds fantastic :) thank you! I've been meaning to ask- what kind of heavy metal testing did you do? My doctor suggested one that had me ingesting something.. I forget what, but I didn't want to do it. Have been reading a lot about hair tests. Any recommendations would be appreciated when you have a moment. Thanks again :)!
 

Tiger Lily 813

Senior Member
Messages
173
I'm also wondering, if you might know more about this, if it's possible that iron is hiding anywhere else in my body while I'm coming up with normal ferritin levels (50-60). I find it hard to believe that I've been having all of these health issues as a result of increasing from 20-50, though it was a quick increase. Not sure how the process works...
 

Crux

Senior Member
Messages
1,441
Location
USA
what kind of heavy metal testing did you do?

I ordered an iron panel, ceruloplasmin, and copper test (s) from life extension. They send a prescription, then you go get a blood draw from the nearest Lab Corp. I've gotten my results in less than a week.

There's debate about the accuracy of serum blood tests, but , They're easy to get, and relatively affordable.
 

Crux

Senior Member
Messages
1,441
Location
USA
I'm also wondering, if you might know more about this, if it's possible that iron is hiding anywhere else in my body while I'm coming up with normal ferritin levels (50-60). I find it hard to believe that I've been having all of these health issues as a result of increasing from 20-50, though it was a quick increase. Not sure how the process works...

From what I've been reading about iron metabolism and its perturbations, iron can be deposited just about anywhere in the body. Iron panels don't always show iron loading. Specialized MRIs may be used.

There are also some iron anemias, such as thalassemia, that present with low blood iron, but overload in organs. Even with iron anemia, it collects in the liver.

It's a mess trying to figure it out, but, iron dyshomeostasis appears to be an issue with multiple conditions.
 

Crux

Senior Member
Messages
1,441
Location
USA
I'm also wondering, if you might know more about this, if it's possible that iron is hiding anywhere else in my body while I'm coming up with normal ferritin levels (50-60).

I should also add that ' anemia of chronic disease' presents with low serum iron. The body will withhold iron to prevent microbes from using it for growth.

BTW, ferritin isn't a reliable indicator of iron stores either. Even transferrin saturation % can be inconclusive. Still, an iron panel is worth trying first.
 

Tiger Lily 813

Senior Member
Messages
173
@Crux would you happen to know any reason that the iron imbalance I'm trying to fix would cause any problems when using the zapper? I think it would help my immune system deal with infections and viruses that it struggles to handle on it's own these days.
I've really struggled with this over the past six months so my plan is to start zapping for my overall health, and look into the cutler protocol for chelation.
 

Crux

Senior Member
Messages
1,441
Location
USA
I don't have any experience with the zapper, only have read anecdotes.

The Cutler protocol looks to actually be more than one, here's what he writes about iron overload :
http://www.consumerhealth.org/articles/display.cfm?ID=19990303191838

I do recommend the use of copper, whether in foods or supplement, to regulate iron. It is necessary for iron homeostasis, both iron deficiency and excess.

Copper brought my iron markers into normal range, except for ferritin, ( lowered but still too high.)

Copper is antimicrobial, so it may help to ward off infections.
 

Basilico

Florida
Messages
948
I have a few questions for you:

-What form of iron were you supplementing with?
-How much were you taking and were you taking it all at once or spread throughout the day?
-Did you combine it with anything (dairy, coffee, tea, Vit C, etc...)
-you mentioned you had 'iron overload' but aside from symptoms, you only specified ferritin being 58 (which is actually on the low side). Did you have any bloodwork that showed iron toxicity, or are you assuming that your reactions were due to too much iron?

I have a very long history of really weird and unexplainable iron issues. A few years ago I discovered I had iron-deficiency anemia (my ferritin was 11 and all my other values were under the threshold of anemia). This was kind of weird because I'd always been a big meat eater, and I never really had heavy periods. In looking back at my bloodwork, I realized I'd been anemic for 10+ years, and not a single doctor ever said anything about it to me, so I had no idea (which is what officially caused me to lose any trust in doctors). Once I understood I needed to boost my iron, I took Iron Bisglycinate. I avoided foods/beverages that hindered iron absorption (like dairy and coffee) and I combined it with Vit C (since ascorbic acid increases iron absorption). I was able to raise it from 11 to around 100 within a few months, which is kind of miraculous since most people struggle to raise it even long periods of time. I discovered that as long as I kept taking iron, my ferritin stayed in a perfect range. Within months of stopping iron, it would inevitably plummet hard. If you look at my ferritin levels over the past few years, it's like a rollercoaster. I even had a fecal test to see if I was losing blood in my stool, but the results indicated that wasn't a problem.

For a while, my theory was that I had some kind of longstanding bacterial infection, since bacteria needs a lot of iron (and after reading that you had a lyme/bartonella infection, it could be that taking super high doses of iron helped to stimulate them, but I'm not sure if that's possible if they are dormant).

In my case, I am starting to think my wacky ferritin has something to do with my nitric oxide/superoxide/peroxynitrite cycle, since ferritin is a crucial part of that cycle. I am still in the early stages of trying to understand this extraordinarily complex system (in fact, I don't think it's even totally understood by scientists). In the meantime, I'm continuing to supplement with iron because it's a requirement for every living thing, so I don't really have much of a choice.

Also, my husband needed to supplement iron after a protocol he did left him anemic. Unfortunately, his autoimmune arthritis was already slightly activated, and taking the iron at that point caused it to get much worse than normal (we think, anyway) because iron is pro-inflammatory. So it could be that if you take a break from it, you could resume once you are feeling better. And perhaps by taking smaller amounts but combined with Vitamin C to insure that it is absorbed better, you could get more 'bang for your buck' with a smaller dosage.
 

Tiger Lily 813

Senior Member
Messages
173
I have a few questions for you:
Thanks so much for your thoughts on my iron mystery!

-What form of iron were you supplementing with?

Ferrous Fumarate 325 mg.

-How much were you taking and were you taking it all at once or spread throughout the day?

Yes, so, I'll admit to being ignorant of the fact I was overdosing, but my doctor was rather nonchalant about my taking it. I had been taking one or two of the 325 mg for a couple weeks, and then I upped it to three per day, and honestly I was working really hard and thought I was doing myself good. I didn't realize that that is a TON of iron. I started to have symptoms (consistent with overload) and finally figured out after two weeks of this megadosing, and then I promptly stopped.

-Did you combine it with anything (dairy, coffee, tea, Vit C, etc...)

Not intentionally, no. I didn't research iron well, I just bought the pills that I found online that everyone claimed were helping them so much. There was no cautionary tale in the customer reviews, only praise!

-you mentioned you had 'iron overload' but aside from symptoms, you only specified ferritin being 58 (which is actually on the low side). Did you have any bloodwork that showed iron toxicity, or are you assuming that your reactions were due to too much iron?

I'm fairly certain that due to my megadoses, my symptoms and timing that iron is/was my problem. I don't know how to explain this, but it seems as though my body wasn't able to do with this iron what it ought to...

For a while, my theory was that I had some kind of longstanding bacterial infection, since bacteria needs a lot of iron (and after reading that you had a lyme/bartonella infection, it could be that taking super high doses of iron helped to stimulate them, but I'm not sure if that's possible if they are dormant).

I thought that too, but bartonella is my chief concern, and regardless I've read that bartonella and lyme both don't feed on iron. Also, my symptoms are different from those conditions right now. However, I've definitely read theories about the body hiding iron away in times of infection. So may be related to the odd way my body seems to be handling this.

In my case, I am starting to think my wacky ferritin has something to do with my nitric oxide/superoxide/peroxynitrite cycle, since ferritin is a crucial part of that cycle.

I want to learn more about how nitric oxide functions in the body. Please share if you have links/threads :)

I am still in the early stages of trying to understand this extraordinarily complex system (in fact, I don't think it's even totally understood by scientists). In the meantime, I'm continuing to supplement with iron because it's a requirement for every living thing, so I don't really have much of a choice.

I wish I knew why your body seems to drain iron so quickly, I'm sure that is a very frustrating experience and I hope that you find your answers right away.

Also, my husband needed to supplement iron after a protocol he did left him anemic. Unfortunately, his autoimmune arthritis was already slightly activated, and taking the iron at that point caused it to get much worse than normal (we think, anyway) because iron is pro-inflammatory. So it could be that if you take a break from it, you could resume once you are feeling better. And perhaps by taking smaller amounts but combined with Vitamin C to insure that it is absorbed better, you could get more 'bang for your buck' with a smaller dosage.

I too have experienced arthritis in response to the iron initially. For awhile I thought having my period seemed to help the condition and I would have less arthritis, but I began having very heavy periods which, is also a problem. Maybe my body is trying to ditch the excess iron that way, but it still wreaks havoc on my body to have heavy periods.

Good note about vitamin C. People with high iron are very concerned about Vitamin C. Honestly I don't know if absorbing would help me though, if absorbing means exhausting and using up and lowering, then I'd think I'd want to be absorbing it..!

So very confusing. I feel badly about presenting my doctor with this case that makes no sense. I may have additional autoimmune issues underlying even lyme - I kind of suspect lupus actually due to symptoms and family history and different things that have come up over the years for me. At any rate it does seem that my body is doing something unusual with iron. I hope you find your cause, please let me know <3