High or low iron and ferritin

[Gondwanaland]

I am looking into my husband's weird blood results which include high ferritin (currently without active infection) and polycythemia (RBC count above range). The appt with the hematologist is finally in the coming week, but the high iron is an issue that keeps coming back. After the hematologist, we are going to see a low carb dr because I want my husband to follow a fasting protocol in order to be able to address his simple sugar addiction - this alone would help with his NAFLD and iron overload. He does not have hemochromatosis SNPs, but does have GIlbert's.

I am copying Crux's reply on what helps her to reduce iron overload, but feel free to also discuss other iron issues ( @picante )

With occipital neuralgia and other types of headache, there may not be elevated iron, ferritin, or other blood markers. There can be anemia. Even with iron deficiency anemia, there can be iron deposits in organs.

DH definetly deosn't have anemia, but the dr who performed his US said the color of his liver looks like iron overload + NAFLD

It's been about 5 yrs. since a blood test, RBC normal, WBC only elevated with an adrenal crisis. Had high to high normal Hct., and HGB., but that can happen with iron overload,though not usually. Iron loaded people can be susceptible to infection.

I am raising an eybrow to what is considered "normal range" because DH's issues could have been high blood RBC count all along while it was in the upper half of the range, and now he has the same issues - but aggravated - and these are related with polycythemia. Last year exactly at this time of the year he had pneumonia and his ferritin skyrocketed, then lowered with the abx. About 2 yrs ago he had a phlebotomy - can't donate blood because he had Hep A many years ago.

In reading about brain iron deposition, it's kind of a different animal. Hemochromatosis people usually don't have the brain iron deposition that people with neurodegenerative disorders do, though some do.

I'm happy to share what I'm doing, especially with you.

- Copper glycinate supplementation. It's good for both iron anemia and overload. It mobilizes rather than chelates iron. I'm taking 2mgs. daily. ( I'm not sure that it would be good for starters, because it can raise nitric oxide, often high in migraine.)

He usually gets symptoms of low copper. What puzzled me is that last year he took penicilin for pneumonia (doesn't it chelate copper?) and was symptom free, he felt really well on penicilin, and had a decline after stopping it 5 days later and taking other abx.

- R-lipoic acid chelates iron, along with other metals. I take it separately from the copper and zinc. I take ~ 60-70 mgs. daily, just once. ( chelates brain iron in animal models)

I wonder how he would feel on ALA since he is very sensitive to sulfur (related to copper-chelation properties?)

- Green tea, chelates iron. 3-6 cups daily. (Had to add extra iodine because of the fluoride.)

High manganese and increases NO - he gets instant headaches from it

- Quercetin chelates iron. Usually 250mgs daily.

He usually does well on quercetin

- B12 competes with iron for absorption in the intestines. It's a good inos inhibitor, (inducible nitric oxide), good for migraine. I'm taking 1mg. daily. Used to take as much as 15mg.

I think taking B12 might be dangerous for his high RBC levels

- Melatonin is a good inos inhibitor, and , it chelates iron. double good. I take about 1mg. nightly.

He usually has low cortisol in the morning, and melatonin worsens it

- Zinc competes with iron, as well as copper, I take them separately. ~ 15 mg. daily. Zinc may down regulate inos.

A couple of years ago he took zinc supplementation (without copper ) and clearly was dumping a lot of iron via IBS-D

I haven't tried any drugs that chelate iron. These supps. seem to work.[/QUOTE]
Thank you so much for detailing your regime. Whenever DH tried supplements it was a huge disaster. He has a ton of dormant past infections (meningitis, Hep A) and some seem to resurface with anything he takes (MRSA) - and even stuff that he is having for the 1st time out of the blue (HSV, pneumonia).

Let's see what the hematologist suggests first

 

[taniaaust1]

Maybe he has hemochromatosis, has he been gene tested for this? Im a carrier of one of the hemochromatosis genes, my ferritin is though low (to borderline anemia levels) due to the ME/CFS.

 

[Rossy191276]

Every time my ME/CFS flares my ferritin goes high which doctor believes is sign of inflammation rather than high iron

 

[Gondwanaland]

Maybe he has hemochromatosis, has he been gene tested for this? Im a carrier of one of the hemochromatosis genes, my ferritin is though low (to borderline anemia levels) due to the ME/CFS.

No SNPs for that in his 23&me results

Every time my ME/CFS flares my ferritin goes high which doctor believes is sign of inflammation rather than high iron

It is a clear sign of infection when RCP is also abnormally high, and a sign of Metabolic Syndrome / NAFLD if RCP is normal or "normal" high.

 

[Crux]

DH definetly deosn't have anemia, but the dr who performed his US said the color of his liver looks like iron overload + NAFLD

I've wondered if ultrasound shows iron overload in liver or other organs. Biopsy is invasive , especially with one's tendency towards infection. I've read that MRI is at least as diagnostic as biopsy, and far less invasive.

I am raising an eybrow to what is considered "normal range" because DH's issues could have been high blood RBC count all along while it was in the upper half of the range, and now he has the same issues - but aggravated - and these are related with polycythemia. Last year exactly at this time of the year he had pneumonia and his ferritin skyrocketed, then lowered with the abx. About 2 yrs ago he had a phlebotomy - can't donate blood because he had Hep A many years ago.

High RBC does point to polycythemia, but it should be investigated further because it is not diagnostic.
I wonder if it's associated with iron overload, but I didn't find anything other than this man who was questioning some Docs about it. Turns out, he also had iron overload.
https://www.doctorslounge.com/hematology/forums/backup/topic-1989.html

I've read that phlebotomy can really help reduce liver iron load. Would the Doc be willing to prescribe them?

He usually gets symptoms of low copper. What puzzled me is that last year he took penicilin for pneumonia (doesn't it chelate copper?) and was symptom free, he felt really well on penicilin, and had a decline after stopping it 5 days later and taking other abx.

It's penicillamine that chelates copper. DH probably felt much better from the reduction of infection. The decline shortly after was probably because of all that available iron for microbial growth, I would guess.

Copper is antimicrobial. Microbes generally find ways to protect themselves from it.

I wonder how he would feel on ALA since he is very sensitive to sulfur (related to copper-chelation properties?)

In ruminants, high sulfur depletes copper. ALA also chelates copper. If copper is low, there could be side effects, I would guess. There was a time when ALA caused some neuropathy for me. I stopped it. Now I wonder if it was because of low copper.

Iron is essential, but , if unbound, it can cause massive destruction in the body.

I really hope things go well with the hematologist.

 

[Oberon]

Every time my ME/CFS flares my ferritin goes high which doctor believes is sign of inflammation rather than high iron

Make sure they run a full Iron panel for your husband. Since I've been ill I've either had or been borderline Anemia of Chronic disease, i.e. High Ferritin, Low Iron. This has been tested a few times now and is fairly consistent. In those with health issues like CFS, Ferritin is not always the most reliable source for iron status.

I think taking B12 might be dangerous for his high RBC levels

Anecdotally I would second that notion. High dose B12 at one point caused my RBC level to skyrocket above range in to polycthemia territory. I do not know if lower doses of b12 would do the same thing.

 

[Crux]

Since I've been ill I've either had or been borderline Anemia of Chronic disease, i.e. High Ferritin, Low Iron

You may already know this, but in Anemia of Chronic Disease/ Inflammation, iron may be low in blood, but elevated in tissues. Taking more iron may be contraindicated.

 

[Daffodil]

@Crux I am glad you told me this! I have been taking iron supplements for a few months now due to low iron, which I always have. its REALLY low...but I had never heard before that it may be contraindicated!

 

[Crux]

@Daffodil ,

I was surprised too when I was reading about iron. It's considered to be the highest deficiency in the world. Some people are deficient, of course, but many are getting enough in their diet.

In some types of anemia,like anemia of chronic disease, the body is withholding the iron from microbes, so it's a protective maneuver.

In other types of anemia , like, thalassemia, iron may be low in the blood, but elevated in the heart and other organs.

Then there's copper deficiency. Many folks with it can have what seems to be iron deficiency, but it's copper that's needed to regulate the iron.

However, I really don't know what's going on with your situation. Are you getting enough iron in your diet, along with copper ?

Hope you are better - I noticed you've been having a rough go lately.

 

[Daffodil]

@Crux thank you yes.. I don't know if I am crashing due to it being that time of the month or what....but something is certainly going on

maybe its all the iron I have been taking!

I don't think I get any copper...?

I am going to ask my doc at the end of the month about the iron situation. maybe I will stop taking it in the meantime

thanks again!
xo

 

[Oberon]

@Crux thank you yes.. I don't know if I am crashing due to it being that time of the month or what....but something is certainly going on

maybe its all the iron I have been taking!

I don't think I get any copper...?

I am going to ask my doc at the end of the month about the iron situation. maybe I will stop taking it in the meantime

thanks again!
xo

I don't think it's likely Iron would be harmful if your Ferritin is low. Anemia of Chronic disease is usually indicated where you have high ferritin and low iron with the theory that the body may be shuffling iron in to it's storage to prevent pathogens from using it like Crux said. I would ask your doctor to run a full iron panel.

You may also want to try a different form of iron as some forms are easier to tolerate than others.

Copper deficiency is quite rare; it's hard not to get enough copper in your diet. It is possible that a supplement you take will eventually drive copper down, but again it's rare. Feel free to enjoy some dark chocolate to get your copper up .

 

[Daffodil]

@lakesarecool would love to have some choc right about now lol. but that's one of the things I am not supposed to eat!
thanks for the info
xo

 

[Crux]

@Daffodil ,

Are you still taking antibiotics ? Some are really good iron chelators, especially doxycycline and monocycline.

 

[barbc56]

@Crux I am glad you told me this! I have been taking iron supplements for a few months now due to low iron, which I always have. its REALLY low...but I had never heard before that it may be contraindicated

Yes this can be true and shows why it's even more important to see a hematologist. Also if your body doesn't absorb iron, iron supplements most likely won't correct an anemia.

Iron overload or Hemochromatis, is a serious condition that can damage organs. My BIL has this and his is inherited.

http://www.medicalnewstoday.com/articles/166455.php

I would not mess around with supplements or chelators or at least tell your doctor about the use of these as they can not only mess up any blood tests but also be dangerous if substituted for recommended treatments.

I have the opposite, low ferritin but normal cbc and every couple of years need an iron infusion. I can usually tell as my RLS (Restless Legs Syndrome, now called Willis Ekbom Disease), gets worse. This time when I saw my hematologist I was somewhat perplexed as my ferritin level was normal for my range. For RLS the recommended ferritin is120. However, this number taken in the context of other specialized blood tests I had been given, turned out to be inflated. I had the infusion and my RLS symptoms are basically gone again. I still have to watch caffeine consumption. The only two times I needed medication was when I was younger and very anemic and not as much was known about iron disorders.

I only mention the above as an example of how complex this health condition is and why it's important to see a specialist.

@Gondwanaland
Good luck at the hematologist and keep us posted.

 

[Daffodil]

@barbc56 @Crux

I am on a Tetracylcine and Clarithromycin.

something really bad is going on. 6 days ago, I woke up REALLY sick and have been that way since. I haven't changed anything..I am on the same treatment I was on months ago when I was doing very well. The only thing is, I have been on Feramax for like 2 months ago.

I emailed my CFS specialist to ask if it could be the iron.

@barbc56 i am not sure if the units being used here are the same, but my ferritin is 7. I think the normal range is 20 - 200 or something??

I am using the word Iron interchangeably with Ferritin..is this not correct? sorry my fog is insane

I cant see a haematologist easily...in Canada it would take a lot of time....and they likely wouldnt know much about this condition.
xox

 

[Crux]

So there Can be low Ferritin with infection/ inflammation.

Here are a few studies :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC398432/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5358492/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4296238/

The body may produce the hormone, hepcidin, to decrease iron availability to pathogens, when they invade.

 

[Crux]

@Daffodil ,

That was low ferritin back then. I wonder what it would be now.

Sorry you feel awful.

Tetracyclines do chelate iron. So , it may have been the abx,
or, your body lowered iron to protect you from the evil pathogens.

Either way, I hope your CFS specialist can sort it out .

 

[barbc56]

@Daffodil

So sorry this is going on. I will look up my units.


I know it can sometimes it can be the luck of the draw going to an ER, but if do you think you should do this?
Good luck.

Missed this. Ferritin is your iron stoage and I believe a protein? It's different but low ferritin can eventually cause your iron counts to drop. Both are considered a type of anemia and can have the same symptoms.I will try to find a source but it may be tomorrow as I'm down for the count today. Maybe others can look? Sorry.

Why are you taking the antibiotics? Do youmind naming your CFS specialist though that may not be relevant. Maybe others with a medical background? @Jonathan Edwards @Kati @Kina Can't think of any others but Kina is swamped but thought it wouldn't hurt to tag her. Sorry kina.

My memory is foggy but I think my hematologist said low ferritin probably means no inflammatio?n but take that for what it's worth.

 

[Daffodil]

@barbc56 oh gosh no, going to ER would be a big mistake around here lol. plus I am not like...emergency sick

@Crux I know about anemia of inflammation but I had never looked into the connection between iron and bacteria for some reason.....I am going to do some googling and check out your links. should be interesting

my specialist said nothing about being careful with iron supplements and I did tell him I am on them....but I guess I will see what he says now.

thanks a lot for the help, guys
xoxoxo

 

[barbc56]

@Daffodil

Measuring units. ng/mL

If your number are the same units yours is very low. My hematologist says people need at least 50. I don't want to start giving medical advice but it might be worth checking.