Dr Hive. Low iron

[Tap]

Does anyone know much about a body that doesn't hold onto iron? DD21 has issues holding onto her ferritin stores. She has been to a PCP, GI specialist, hematologist, and naturopath for it. (don't need an iron recommendation, just a way to hold onto it better).

The PCP had her try ferrous sulfate/vit C and wrote referrals to other specialists. She has low-normal iron on her blood work, but her ferritin drops into the low teens.  Ferrous Sulfate/gluconate sloooowly raise her numbers but if she stops taking it, they plummet quickly. By the time it hits these numbers, she is a lump on the couch. Her migraines go into overdrive. And she starts struggling with mental confusion.  The supplements work, but she doesn't seem to hold onto it. 

The Gi specialist suspects that she has internal bleeding periodically (due to constipation) and that causes blood loss= low iron. But nothing showed up on the endo/colonoscopy or the capsule-endoscopy (done a few months later). Constipation issues yes... but no internal bleeding. Which may mean, that it isn't the problem, or it could mean that we just missed the bleed. 

The 2 hematologists she saw didn't see a problem that falls under their specialty. They just recommended supplements and agree with the GI specialist's theory. 

 The naturopath suggests supplements and doesn't know the cause. DD has several health issues (POTS, Ehlers Danlos, MCAS and others) and her neurologist is an international specialist in those disorders. She isn't just a fly-by-night doctor. She is very, very highly regarded in her field. She agrees the GI specialist may be correct, but doesn't know since there is no proof. Due to her GI issues, the naturopath wants her using Ferrous Bisglysinate.  Please don't recommend a different iron, this was chose due to several health issues. This one works, until she misses a few doses and then her numbers start a rapid downward cascade.  What I would like, is ideas on helping her to hold onto the iron she does eat!! and to hold onto the iron she takes in supplement form. 

Her neurologist tried to get her an iron infusion a few years ago to see if it would help. Long story short...by the time we got one approved by insurance, that the hospital could buy/administer ( a real struggle), her numbers rebounded enough that she didn't clinically need it.  She doesn't get low enough on her iron stores to justify an infusion, but she feels horrible and it directly correlates to her ferritin, so we know that is the problem. 

She eats meat 5-7 days a week. She eats very, very healthy otherwise.  When she feels low, she will eat red met for a few days and an iron rich diet. She will go on her supplements and try to be mindful. She has an Mirena IUD, so she bleeds minimally each month. 

Any ideas?????

 

She takes one of each of these twice daily when she is really bad. Once daily when she is feeling a bit low. And not at all, when she forgets/decides to go off them (oy!). 

NOW Supplements, Iron 36 mg, Double Strength, Non-Constipating, Essential Mineral, 90 Veg Capsules

Solaray Super Bio C Buffered Vitamin C w/Bioflavonoids | Timed-Release Formula for All-Day Immune Support | Gentle Digestion

[aaplank]

After futile attempts with other supplements, my daughter's iron levels only stabalized after she started taking dessicated liver capsules. Due to multiple health concerns and allergies, she started off just with taking one capsule a day, and now she takes several a day. It took some time to repair the deficit (several months to a year), but now she is almost at optimal levels and she has energy, and no more dark circles under her eyes and listlessness. Im so thankful. 

I would recommend the Coorganic or Radiant Life brand. 

[melmichigan]

I don't store iron well. I have been most successful since I changed to an every other day schedule this year. I take ~200mg of elemental iron every other morning with OJ, on an empty stomach.  I take a combination of Thorne Ferrasorb (cofactors are important), their plain Iron Bisglycinate, and Novaferrum polysaccharide iron complex (each have a specific role in anemia). New research goes into detail about how the hepcidin response influences absorption so large doses in first thing in the morning, but every other day capitalize on absorption when it's most effective.  Here is one article, and another, but there are many to reference.  As recent example:  my hemoglobin dropped under 8, so I switched to 150mg polysaccharide iron complex (targets hemoglobin levels) and within a month it was up by over a full point (which would have taken me months before).  So now I'm back to only 100mg of polysaccharide iron to allow the bisglycinate to target ferritin.  I see the doctor in another two weeks for return levels, but I'm optimistic as my iron saturation was 5.7% in August.

ETA: If you're already using supplements you know to wait at least thirty minutes afterwards before eating anything, which is the hard part for me, waiting for that caffeine in the morning.

Edited October 8, 2020 by melmichigan

[J-rap]

I don't have answers, but it sounds a little like my dd.  She has chronic migraines and did find out at one point that her body doesn't seem to hold a lot of things well either -- like meds of any kind, supplements, etc.   Iron especially was red-flagged, so she was put on an iron supplement that was already partly broken down (sorry, I can't remember the term) along with vitamin C, but it never boosted it as much as it should have.  She is also chronically low in vitamin D, even when she takes huge prescribed doses.

She tends to feel better when she stays off gluten, and there is some gluten intolerance gene in the family (according to 23and me).  I know celiac disease smooths out the lining of your stomach which makes digesting things more difficult, so maybe a mild form of that is happening.  Also, there is hemochromatosis in the family, and apparently she carries one of those genes -- but that's confusing because that seems like the opposite of not absorbing iron... 

In other words, I have no answers but am all ears!  (I hadn't heard of that liver supplement... Might have to look into that!)

 

 

[itsheresomewhere]

This might sound odd but has anyone ever thought about testing for celiac’s?  Someone I am very close to had massive issues with iron and after multiple specialists, one suggested a gluten free diet.  For her, it worked extremely well. She still cooks with cast iron, eats gluten free and takes a supplement to make sure she never goes back down to her bad levels. 

[BeachGal]

Could be her microbiome. Particular types of gut bacteria feed on iron. If you do a search using “microbiome” and “ferritin”, you should find some articles. Here’s a short, general article:

https://labblog.uofmhealth.org/lab-report/gut-microbiome-puts-brakes-on-iron-absorption

Does she take low-dose Naltrexone for POTS?

ETA: Glyphosate in her diet could cause problems. It’s in a lot of food, even water.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4782969/

Edited October 8, 2020 by BeachGal
added info, typo

[BeachGal]

1 hour ago, J-rap said:

I don't have answers, but it sounds a little like my dd.  She has chronic migraines and did find out at one point that her body doesn't seem to hold a lot of things well either -- like meds of any kind, supplements, etc.   Iron especially was red-flagged, so she was put on an iron supplement that was already partly broken down (sorry, I can't remember the term) along with vitamin C, but it never boosted it as much as it should have.  She is also chronically low in vitamin D, even when she takes huge prescribed doses.

She tends to feel better when she stays off gluten, and there is some gluten intolerance gene in the family (according to 23and me).  I know celiac disease smooths out the lining of your stomach which makes digesting things more difficult, so maybe a mild form of that is happening.  Also, there is hemochromatosis in the family, and apparently she carries one of those genes -- but that's confusing because that seems like the opposite of not absorbing iron... 

In other words, I have no answers but am all ears!  (I hadn't heard of that liver supplement... Might have to look into that!)

 

 

Iron avidity is surprisingly not all that unusual in people with hereditary hemochromatosis (HH). HH can also begin much earlier than originally thought — late teens, early 20s. It can go undiagnosed for years causing a lot of preventable damage. Here’s an older article about HH and iron avidity if you’re interested.

http://www.irondisorders.org/Websites/idi/files/Content/1050668/IronAvid-all.pdf

Edited October 8, 2020 by BeachGal
typo

[Tap]

9 hours ago, itsheresomewhere said:

This might sound odd but has anyone ever thought about testing for celiac’s?  Someone I am very close to had massive issues with iron and after multiple specialists, one suggested a gluten free diet.  For her, it worked extremely well. She still cooks with cast iron, eats gluten free and takes a supplement to make sure she never goes back down to her bad levels. 

Yes. She had a celiac biopsy during her colonoscopy. Her GI specialist suspected it in the beginning, but after her colonoscopy, she said she saw no evidence of it and the biopsy was clear. The doctor said she doesn't have celiac. The GI doctor she saw is a top rated doctor in our area, so I do trust that dd doesn't have celiac. 

[Tap]

9 hours ago, BeachGal said:

Could be her microbiome. Particular types of gut bacteria feed on iron. If you do a search using “microbiome” and “ferritin”, you should find some articles. Here’s a short, general article:

https://labblog.uofmhealth.org/lab-report/gut-microbiome-puts-brakes-on-iron-absorption

Does she take low-dose Naltrexone for POTS?

ETA: Glyphosate in her diet could cause problems. It’s in a lot of food, even water.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4782969/

Yes, she takes LDN.

She is careful with her GI flora. She has had GI issues for years. She takes Florastor if her GI symptoms seem to be flared up, but otherwise her GI doctor says she doesn't suspect a microbiome problem but has her use the supplement to head off any future issues. 

[itsheresomewhere]

6 minutes ago, Tap said:

Yes. She had a celiac biopsy during her colonoscopy. Her GI specialist suspected it in the beginning, but after her colonoscopy, she said she saw no evidence of it and the biopsy was clear. The doctor said she doesn't have celiac. The GI doctor she saw is a top rated doctor in our area, so I do trust that dd doesn't have celiac. 

She could be just intolerant then.  Maybe trying out the gluten free diet for a bit and see if it helps.  These was recently talked about during a talk about connective tissue diseases.  Some did see an improvement while some don’t.  
 

Edited October 8, 2020 by itsheresomewhere

[Tap]

3 minutes ago, itsheresomewhere said:

She could be just intolerant then.  Maybe trying out the gluten free diet for a bit and see if it helps.  These was recently talked about during a talk about connective tissue diseases.  Some did see an improvement while some don’t.  
 

She has tried to limit it in the past, without any luck. It wasn't a full celiac diet, but dd really doesn't eat a lot of gluten anyways. She may have one serving of bread a day and occasionally some crackers. Her husband doesn't like pasta, so she doesn't make it. She cooks from scratch (including her sauces), so there aren't hidden sources (unless they are miniscule). 

 

[bethben]

I too have this issue.  I test anemic when I don’t take iron supplements and when I do, I get into low normal—just above the anemic level.  I have low iron related issues.  I’m pretty sure I have some gut issues and am being tested for them.  I don’t eat dairy or gluten and haven’t for a while but the problem still persists.  I am working with a naturopath to figure out why instead of going the conventional doctor route.  A good naturopath will try to figure out the whys instead of just treating the issue they see.

[Soror]

Ferrous Biglyscinate works well for me.

I have trouble with low iron too. I can be related to low thyroid. I also think I don't absorb well as my need for other vitamins is high and cholesterol stupid low. I've tried different things for the gut but none hae them have been a miracle cure. I keep tested and supplement. I slacked this spring and lo and behold I started having massive issues with fatigue during my period. I am gluten free and have been for years. I know another friend had troubles with vitamin levels, at first they told her she didn't have Celiac, it persisted and then later testing show she did have it. It often takes years for a diagnosis and status can change.

[Skippy]

She may need to be eating iron-rich foods like red meat every day. If this is what works when she’s low, she may need to do it for daily maintenance. For me, iron supplements do not seem to work as well as food sources, particularly red meat. I hope she feels better. It’s a terrible feeling. 

[J-rap]

12 hours ago, BeachGal said:

Iron avidity is surprisingly not all that unusual in people with hereditary hemochromatosis (HH). HH can also begin much earlier than originally thought — late teens, early 20s. It can go undiagnosed for years causing a lot of preventable damage. Here’s an older article about HH and iron avidity if you’re interested.

http://www.irondisorders.org/Websites/idi/files/Content/1050668/IronAvid-all.pdf

Thanks, I'll definitely read this!

[ktgrok]

I'd keep trying to get an infusion done - I was listening the other day to a podcast for bariatric patients and supposedly an infusion can last for months and months, even a year in some people, so would be worth it for quality of life. Even if you have to travel to a different city twice a year or something. 

Also on that podcast (with a guy who has a PhD, not random dude) they talked about how in bariatric patients the body chemistry can change so that the body purposely is absorbing less iron. The iron is there, but the gut won't absorb it. If that can happen in bariatric patients maybe it happens in other people too - again the solution was an iron infusion to bypass the gut. 

Did they do just the colonoscopy or a full endoscopy as well, with biopsies of the small intestine?

[Lb20inblue]

I have sickle cell anemia and my ferritin goes down to 4/5 at least twice a year.  From my personal experience, its important to eat a variety of high iron animal and veggie sources daily, find a iron supplement to take every few days, and get an iron infusion when needed.    

[Tap]

4 hours ago, ktgrok said:

I'd keep trying to get an infusion done - I was listening the other day to a podcast for bariatric patients and supposedly an infusion can last for months and months, even a year in some people, so would be worth it for quality of life. Even if you have to travel to a different city twice a year or something. 

Also on that podcast (with a guy who has a PhD, not random dude) they talked about how in bariatric patients the body chemistry can change so that the body purposely is absorbing less iron. The iron is there, but the gut won't absorb it. If that can happen in bariatric patients maybe it happens in other people too - again the solution was an iron infusion to bypass the gut. 

Did they do just the colonoscopy or a full endoscopy as well, with biopsies of the small intestine?

She had a full endoscopy and colonoscopy with a bunch of biopsies. Her doctor biopsies multiple sites for everything.  Then a few months later, she she also had a capsule endoscope/colonoscopy  as well, because there is a small section of the GI tract you can see without the capsule camera.  The doctor was frustrated that she couldn't find the problem.  DD has multiple GI issues, so they were looking really thoroughly to see if they could figure out the problem.  

Silly side story....I knew she and her now-husband were truly in love due to her colonoscopy prep.  She had the procedures done when she was 18-19yo. He then boyfriend came to our house to spend time with her during her prep. LOL No many teenage boyfriend will want to spend time with their girlfriend during not just one, but two colonoscopy prep days. LOL  And she had to double up on the prep volume, so twice the volume each time too! 

[Tap]

10 hours ago, Skippy said:

She may need to be eating iron-rich foods like red meat every day. If this is what works when she’s low, she may need to do it for daily maintenance. For me, iron supplements do not seem to work as well as food sources, particularly red meat. I hope she feels better. It’s a terrible feeling. 

I agree, but she and her husband won't do it. They eat very little meat and often share what would normally be a single serving (not vegetarian, but close to it).  She eats it because I talk to her about it often, and she does pick back up, but then drops off again when she feels better.  Part of the problem, is that she is very, very big into conservation and sustainability. So, she is very selective about the meat she buys and thus it is very, very expensive. They are 21/22yo and don't have a huge income.  She knows she needs it, so she budgets for it, but since meat isn't a huge craving they have, it is easy to skip. I offer to pay for it for her, but she won't let me. 

 

[ktgrok]

3 minutes ago, Tap said:

I agree, but she and her husband won't do it. They eat very little meat and often share what would normally be a single serving (not vegetarian, but close to it).  She eats it because I talk to her about it often, and she does pick back up, but then drops off again when she feels better.  Part of the problem, is that she is very, very big into conservation and sustainability. So, she is very selective about the meat she buys and thus it is very, very expensive. They are 21/22yo and don't have a huge income.  She knows she needs it, so she budgets for it, but since meat isn't a huge craving they have, it is easy to skip. I offer to pay for it for her, but she won't let me. 

 

Could you do a subscription box or delivery of pastured meat every so often? I know there are services like that. 

But really, I'm guessing an infusion twice a year or so is going to be the best option - it sounds like she just doesn't absorb it properly from the gut, so bypassing it is the way to go. 

[Arcadia]

9 minutes ago, Tap said:

I agree, but she and her husband won't do it. They eat very little meat and often share what would normally be a single serving (not vegetarian, but close to it).  

I can only absorb heme iron well. I can’t be vegetarian. When I needed my haemoglobin levels up fast for surgery approval, I had to resort to mutton chops as first choice and liver as backup choice if mutton wasn’t good enough to boost the levels. 
 

ETA:

Beef is better than mutton for iron but I avoid beef for religious reasons.

Edited October 9, 2020 by Arcadia

[ktgrok]

Does she take any acid reducing medications for her GI issues? Those can interfere with iron absorption. It is why i think I have such anemia when pregnant - my reflux gets so bad I have to medicate it heavily and that messes up my iron worse than normal. (its not great anyway, but that's enough to push me over the edge....I was on the line for a transfusion with my third kid. Bisglycinate iron is what saved me, so I think you are on the right track there at least. 

I also do well on the Bariatric Advantage brand vitamins - they are made for people with absorption problems, so might be a good fit for her. They are not cheap, but work well. ( I THINK Metagenics is made by the same people - their Hemagenics is what kept me from needing an iron transfusion when I went so low with my third pregnancy. Then I took the Bariatric Advantage brand my 4th pregnancy and wasn't significantly anemic at all!)

[Tap]

44 minutes ago, ktgrok said:

Does she take any acid reducing medications for her GI issues? Those can interfere with iron absorption. It is why i think I have such anemia when pregnant - my reflux gets so bad I have to medicate it heavily and that messes up my iron worse than normal. (its not great anyway, but that's enough to push me over the edge....I was on the line for a transfusion with my third kid. Bisglycinate iron is what saved me, so I think you are on the right track there at least. 

I also do well on the Bariatric Advantage brand vitamins - they are made for people with absorption problems, so might be a good fit for her. They are not cheap, but work well. ( I THINK Metagenics is made by the same people - their Hemagenics is what kept me from needing an iron transfusion when I went so low with my third pregnancy. Then I took the Bariatric Advantage brand my 4th pregnancy and wasn't significantly anemic at all!)

Nope. No acid meds. Her only GI med is Miralax (added after the iron issue started, so not the cause of it).  Her main GI issue is constipation and slow colon motility.  This is part of why her GI specialist said she was confused. Looking at DD's diet (she lived at home at the time), the fact that food stays in her system longer than normal, low mensuration, and no obvious bleeding.  She was tested for various factors that affect absorption and they were all normal, but her ferritin levels are fickle and hard to keep up. 

[Tap]

Just now, Tap said:

Nope. No acid meds. Her only GI med is Miralax (added after the iron issue started, so not the cause of it).  Her main GI issue is constipation and slow colon motility.  This is part of why her GI specialist said she was confused. Looking at DD's diet (she lived at home at the time), the fact that food stays in her system longer than normal, low mensuration, and no obvious bleeding...low iron doesn't make sense.  She was tested for various factors that affect absorption and they were all normal, but her ferritin levels are fickle and hard to keep up. 

 

[Skippy]

18 hours ago, Tap said:

I agree, but she and her husband won't do it. They eat very little meat and often share what would normally be a single serving (not vegetarian, but close to it).  She eats it because I talk to her about it often, and she does pick back up, but then drops off again when she feels better.  Part of the problem, is that she is very, very big into conservation and sustainability. So, she is very selective about the meat she buys and thus it is very, very expensive. They are 21/22yo and don't have a huge income.  She knows she needs it, so she budgets for it, but since meat isn't a huge craving they have, it is easy to skip. I offer to pay for it for her, but she won't let me. 

 

I understand. Maybe another food source would work for her. I once read a story about the oldest person alive at that time. When she was twenty, she suffered from anemia. Her doctor told her to eat three eggs a day, and she did. Here's one story about her that I found: https://www.today.com/health/world-s-oldest-living-person-emma-morano-eats-eggs-every-t104523