I finally had my hematologist appt and was pleasantly surprised by how knowledgeable she was! She is very very concerned about my ferritin level, which was 11 when I went in and after she checked it is now 9.
She is sending me to an allergist to try to desensitize me to b12 shots (and find out what in them I am allergic to) and said to just keep drowning myself in sublinguals until we can get there - something is better than nothing! But the ferritin being that low for that long really concerned her.
So my question and I can't quite seem to find anything on it - is ferritin dependent on B12 to process? She started me on iron (which makes me feel like I'm going to vomit the lining of my stomach) but is this not going to work without the B12 and folate connection?
I am not anemic, just severely iron deficient according to her. I realize ferritin is iron storage -is there just something wrong with my storage systems overall? Or is it like fundamentally B12 that's taking this all down?? She would like to do iron infusion but we're hesitant with my allergy to b12 shots. Has anyones ferritin raised after b12 went up?
EDITED: Well my iron experience is a failure - my stomach cannot handle any of the supplements I am afraid of having an iron infusion and the allergist is concerned about injecting me with a potential allergen (b12) with no reserves and wants to see which the hematologist says to inject first, iron or b12. Still taking sublingual B12, increased my meat consumption because straight iron is stomach poison to me. I have blood work in less than 2 weeks and a follow up with hematologist shortly after. My options all sound not great at the moment so I may have to hope the doctor is going to make the right choices for me.
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Yikes that is low. Did she do a full iron panel? Serum iron, TIBC, and % saturation? Really best to test before supplementing, because ferritin may be abnormally low even when iron is normal. It may not apply to your case since ferritin is *so* low, so likely you've depleted all your iron, but a full iron panel is still important. B12 is important for red blood cell formation, but if your RBC/erythrocyte count is fine, then no, low B12 shouldn't affect iron absorption.
However pernicious anemia or atrophic gastritis can destroy the cells that make stomach and intrinsic factor, resulting in both low b12 & low stomach acid. Low stomach acid can in turn result in decreased absorption of nutritients.
Do you have celiac or have you been tested for it? It's a very common cause of low iron. Of course any internal blood loss as well eg bleeding polyps. Hypothyroidism is also know to go hand in hand with low iron. You're not vegetarian or vegan?
Have you ever had Gastrin measured (blood test that related to stomach acid) or an endoscopy? A bit concerning that you're reacting to the iron so violently. You might also try a different form. Ferrous fumarate is supposedly harsh. Biglycinate, i think?, is supposed to be gentler. I take ferrous sulfate. Do you take it with food? That might help reduce stomach irritation.
She did full iron panel, and my other numbers are still hanging in there in the normal range. She was very surprised I'm not anemic, especially with all of my symptoms. I've had everything check out with gastro, neuro, internist lol! Endo, scans, etc. Checked for PA, celiac, crohns... no reasons they can find. I eat a great diet actually, meat, seafood, veggies - I am usually very active but this has slowed me down over the last two years. Still walk about about 5-7 miles a day but this is getting impossible now. I am wondering if I am just burning all the b12 and iron off just staying alive at this point!! I do have MTHFR and the hematologist said best guess is that I have a combo of genetic factors and malabsorption for some unknown reason.
Interesting... but I can imagine frustrating! Well at least you can be comforted by the fact that lack of b12 won't affect iron absorption. I hope you can get it all sorted soon. Can i ask what your iron labs were, with the ranges? The low end of serum iron at most labs is still pretty low.
I can't remember if i mentioned this before, but Canadian pharmacies have single use cyano that might be preservative free, or single use hydroxy from Germany that also has very few ingredients. Somthing to consider, in case the allergy is to the preservative and not to cobalt. There's also prescription multi-use hydroxo in the US, Actavis, which may have different preservatives than the standard cyano.
The ranges were pretty good, a couple were on the edge of normal. Retic Abs was low end .055 on .05-.125 scale. Iron 89, hgb 13.4 (12.1-16.4), hct 39.8% (38-50), tibc 351 (240-450) and my iron saturation is 25%. AST was 15 (13-39)... Interestingly my homocysteine was high but my MMA was fine .11. But I'd been taking b12 sublingual and upping b12 foods (like clams) for about a month and a half before.
Indeed, your iron levels look near-normal, and not abnormally low. It would be irresponsible to give you an iron infusion with those levels, you risk iron overload. I would only cautiously supplement low doses of iron with those levels. I am not medically trained.
But I don't really know why ferritin might be so low.
I would actually suggest you join the thyroiduk group and tag the user radd in your post. Radd is quite knowledgable about iron/ferritin related matters. Thyroid uk forum: healthunlocked.com/thyroiduk
You can tag someone by typing the @ symbol and then start typing their name. A drop-down box will appear. You have to click on the name to activate it, and then it will turn blue and the @ will disappear, like this: gypsy_child
I would post all the labs you mentioned, and also include the range for iron. Add the text where you mention all the testing that you have already undergone and your current issues with B12.
You will probably get better answers over there than here, both about how and what to supplement iron, and what else might be causing this issue.
The recommendation she makes seems to be alternate day dosing, between 20mg and 80mg with an iron bisglycinate form. Surpisingly, this is more effective than larger doses taken daily which is explained in the video by increased hepcidin as a result of more frequent larger doses, which counterintuitively worsens iron absorption. Another thing most doctors probably are not aware of.
On the relationship between B12 and Iron, watch from 15:54 :
In B12 deficiency, there can be insufficient Succinyl COA, which is needed to form Hemoglobin (using heme/iron). As B12 is supplemented (and if you have sufficient B6), more iron may be used to create new red blood cells, although this is likely only an issue in early treatment if you had anemia.
As above B12 deficiency won't affect iron absorption.
However, the reason for the B12 absorption may also be affecting iron absorption.
B12 deficiency results in macrocytic anaemias - red blood cells larger and rounder than normal
Iron deficiency results in microcytic anaemias - red blood cells smaller than normal
Having both may make it difficult to see that both anaemias are present if you are looking at results that are averages for all cells in your blood. A high RDW (red blood cell distribution width) may indicate that both are available but if one of the anaemias is being treated it could also a result of the treatment because it takes a while for red blood cells to be replaced - about 3 months on average.
Ferritin is a protein that binds to iron so the body can use it. Whilst ferritin is usually a good indicator of iron status it is possible to have low ferritin but for iron status to be fine so you always need to look at a full iron panel to determine if iron status really is low.
Any ferritin levels below 30 is iron deficiency, regardless of any of your other numbers. Your ferritin is extremely low. Iron deficiency anaemia is when your other levels drop too. They are two separate diagnosis. Have a search for “The Iron Protocol” on Facebook if you’re on there. They also discuss the connection between iron and B12.
I just applied to join - thank you! My gp never even mentioned the low ferritin when it was 11. The hematologist was very concerned about it and the long duration also. So apparently it's a very bad thing to be that low.
sorry you are suffering, I don’t have a solution but can share that I’m also always iron deficient with bouts of iron deficiency anaemia along with pernicious anaemia. my gp tried me on every iron supplement going but I couldn’t keep them down with violent vomiting and diahorrea. Referred to a Haemotologist who told me that b12 deficiency/pernicious anaemia and iron (and folate) deficiency were not uncommon together and it was important to get them all balanced. I get iron infusions, the first one years ago gave me an allergic reaction and I had to have other drugs to sort that out, but since then the formula changed (not because of me lol) and now I’m functioning so long as I get regular b12 injections , iron infusions and take folic acid every day. Earlier this year the Haemotologist suggested I try iron supplements again which I did and when he rang me after a week to find I’d been sick and diahorrea again he just said “let’s not do that, back to infusions “
I'm trying a liquid iron now, I',m hoping I can avoid infusion. I can't take a lot of medications and shots because of allergic reactions. I will be seeing allergist tomorrow so we will see what she says. Maybe I should ask about iron allergy while I'm there for b12.
LadyBothwell Have you tried lower dosages of iron bisglcyinate e.g. at 15-20mg twice a day with meals, taken on alternate days? If you check the first video I posted above, its explained that very high dose iron supplements taken daily often do not work very well to raise iron and a better approach can be lower dosages on alternate days.
yes, thank you for pointing that out, I have tried that but it didn’t raise my level enough to avoid needing an infusion, I do take spatone daily (sometimes multiple sachets) which I can tolerate but it doesn’t make a huge difference to the numbers
Ferritin is a storage protein, but also an acute phase reactant. So, it can be raised in inflammatory conditions. It can be reduced in 'protein lack' situations. Starving someone is likely to reduce their ferritin without them being iron-deficient which is why the full iron panel can be helpful.
To absorb iron from the stomach, the pH needs to be low [acidic] and likewise, B12 absorption needs acidity amongst other things. So, if you're anaemic, B12 deficient and your iron stores are low, giving you a B12 boost will produce a reticulocytosis which will consume what iron stores you've got, but then when you run out of iron, your body will still make red cells, and they'll become increasingly microcytic and hypochromic. This will carry on until something happens to replace your iron stores. However, too much iron is worse than too little, so be careful. It sounds like your doctor is 'switched on' to all of this, so be guided by them.
I'm on my limits here. Haem iron is traditionally believed to be the easiest absorbed. Cereal forms of iron tend to be harder to utilise, but that's my limit. A registered dietitian would be far more help!
This makes me wonder if trying to resolve the b12 has actually led me to lower ferritin. It's been low for a long time but a few years ago was double what it is now so it's definitely tanking. Hopefully I can tolerate iron!
If you address the B12 deficiency when you're iron deficient you'll become more iron deficient. If you seek medical support for the most effective iron replacement then that will help. If you have a separate cause to add to your iton deficiency then that's a separate issue. If you suffer from chronic blood loss, that's a great way of voiding iron, because every millilitre of red cells lost has one milligram of iron in it, in the haemoglobin. It really doesn't take much blood loss to tip you intonegative iron balance. However, don't lose sight of the B12 issue!
Don't attempt to replace iron without medical supervision. It's dangerous. Liver, as we know, is a good source of B12, but it's also a good source of iron too, if you can stomach it.
I’ve had a very low ferritin level for eight years. I’ve tried all different iron tablets but they all upset my bowels! I did eventually manage to take one ferrous fumerate 220 mg daily for three months and it only raised my ferritin level by two. I’ve asked my GP whether I could have an iron infusion and she says I would need to be very anaemic for that and just says being low must be normal for me!!
It's been low a long time but in 2018 it was 18, so it's definitely been higher than what it is. My gp never even mentioned it to me. The hematologist was very very concerned.
Gen89 Have you tried lower dosages of iron bisglcyinate e.g. at 15-20mg twice a day with meals, taken on alternate days? If you check the first video I posted above, its explained that very high dose iron supplements taken daily often do not work very well to raise iron and a better approach can be lower dosages on alternate days.
Solgar Gentle Iron 20mg is one option, should be available from any health store, pharmacy or online. Taking it on alternate days seems to be important for best absorption.
I had precisely the same issue. In my case I received an iron infusion about 3 years ago and my iron panel has been fine since.
On the B12, I suffered a lot of strange symptoms every time I got an injection and my gastro, after testing absolutely everything under the sun felt it was an immune reaction (mast cell activation I think). I take cetrizine now after every injection and the improvement is huge. That is my personal case and may not work for you but apparently B12 causes a massive histamine spike which causes your immune system to react causing all sorts of symptoms. I’m amazed but grateful this simple pill works for me. Good luck. Interested to know how you get on.
I'm very curious about the allergist and what happens. I will update on progress. They say b12 shot allergy is very uncommon so most docs don't know what to do. The hematologist looked it up before y appointment and found the allergist protocol.
Many good facts and explanations from others, but…
I’m gastric bypass oped, and we in fb groups have many members with low ferritin and iron. They get it fixed with iron injections regurly, but it always comes back. But if the get b12 injections regurly (and Folat) the problem with iron gets much better. Most gastric bypass oped have b12 defiency if the are not on b12-injections.
I don`t know how it works, and I dont really care if it fixes my iron/ferritin problem - which it does for me.
Sending sympathy... I also have had low ferritin on for years before b12d (usually without anaemic/iron deficiency). My belief is that taking folate as well made a differenceand helped me get the ferritin up.
The only bit I can reply to is my problem with absorbing B12 and by luck solving it for now. Just by chance my home help suggested I try Kefir yoghurt type drink, as she felt better by taking it for no particular reason. So I tried it for about 2 weeks, Then I had a medichecks Vitamin B12 blood test. And wow, instead of Loosing B12 active points every 6 weeks, This time I had gained 10 points and the next time after that. And I'm now at the top score of 150 Active points. Ive Still got a possible anaemia problem to try and solve, But feel good about the Kefir drink which I drink1/2 a pint, / 500 mls/ 2 or 3 times a week.
Yes it did. Such a relief as previously I was loosing B12 every 6 weeks. Now I’m at the top of the “Active” Scale. But My situation health wise is probably different to yours. And I’ve still got a problem with my MCV results.
I don't have a lot of answers, but can share that my experience was similar. When I first saw a hematologist my ferritin was 11. He was garbage though and did nothing. I found another one who is amazing and immediately started me on iron. They had me do 25 mg of iron bisglycinate which is a gentle form. I took two a day. We also fixed what we believed was the source of my bleeding, heavy periods. I did end up on 3 of the iron pills per day and raised my ferritin to 70 after being a 10 months out from my ablation and having 10 months of iron supplements. I recently tapered off the iron supplements but my ferritin has dropped again. This time it is 58. She is hoping this was just an initial drop and that it will stabilize here. I will retest in 8 weeks to find out. If it drops more then we will explore other reasons for the ferritin issue. I was never anemic but was very close to being so. I have been doing B12 injections for a year now and felt my best when my ferritin was 70 and was doing B12 injections every three days.
I am jealous you can tolerate the iron! I found the most gentle liquid iron hoping I could handle it and it's like straight poison to my stomach I don't know that solving B12 without the iron will work at all for me and my options are becoming quite limited.
Hello - I have only read your post, (not the full thread!), so apologies if I am repeating what others may have said, or am completely off tangent!
I do not know the answer to your question ‘is ferritin dependant on B12’, but I thought I would reply, because I have had a telephone discussion with the private hospital consultant in Cambridge who runs an anaemia clinic (he was recommended by a number of forum members - I have an appointment with him coming up in a few weeks, I have a functional B12 deficiency), and he specifically mentioned ferritin levels as being really important in terms of B12. I have sent him all the blood results that I have, but he says he specifically wants to see my ferritin levels (which I don’t have), as he says that in his experience, if you have low ferritin then it is very difficult to metabolise the B12.
Sorry it is not quite to the point, but I had never heard anything r read about this sort of link before, so thought I would pass it on.
Thanks for the info! Yeah I feel it's a bit chicken or the egg with what to fix. Seems like they depend on each other so if I raise one, the other suffers. So complicated!
I am in the same situation, I have a ferritin level of 6ug/L.My doctors are not being very helpful, I have not been referred to a haematologist. Awaiting more blood work to be done. But I've been feeling awful.
No advice just following this for more information.
Thank you!!! I have been trying oral iron and sublingual b12 and could not take the iron. I tried for a few weeks, a couple different kinds and my stomach could simply not handle it and I had to stop. The hematologist wanted to do iron infusion but I am afraid of side effects from that
Have you tried just 15mg doses of Iron Bisglycinate? I tried one of that kind and didnt experience any stomach upset of any kind. If you can't tolerate that it sounds like your gut issues need to receive priority focus so that you can at least get the nutrients you need into you somehow!
I understand that you are worried about an iron infusion because of your allergies. In the U.K. they are done in a controlled setting in the hospital and I was very anxious about the first one because I often react to drugs and had such a bad experience with iron supplements. The infusion literally changes my life though because after 3 or 4 days I feel so much better and after 10 days (with b12 and folate) almost normal! I do get side effects immediately after the infusion, a few days of diahorrea stomach cramps metallic taste and a headache but honestly I’d rather have that for a few days than the constant daily reaction to tablets every day which in my case didn’t raise my iron levels.
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I am afraid of having an iron infusion and the allergist is concerned about injecting me with a potential allergen (b12) with no reserves and wants to see which the hematologist says to inject first, iron or b12. Still taking sublingual B12, increased my meat consumption because straight iron is stomach poison to me. I have blood work in less than 2 weeks and a follow up with hematologist shortly after. My options all sound not great at the moment so I may have to hope the doctor is going to make the right choices for me.
When to retest B12/folate/ferritin levels post-supplementation?
Low Ferritin, B12 midrange. 
Any connection with B12 deficiency and Bladder issues?
Low Vit b12 and Ferritin. Possibly PA?
