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b12 and ferratin

Lee_maynard profile image
26 Replies

hi all

does anyone know if a ferratin level of 35 can have negative effects on my b12 injections. Doctors have told me it’s well with range(15-300).

been feel terrible for 18 months and feels as if the b12 has stopped working. Thanks

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Lee_maynard
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26 Replies
Nackapan profile image
Nackapan

We all operate at different levels. Do you know what your ferritin level was when well?

I personally had symptoms of low ferritin when it was 29

It is now around 48-50 but took well over a year to maintain this.

Have you had vit D

A full iron panel

Folate level checked.

Thyroid

Symptoms of low ferritin can be restless legs.

Heart palpitations

Hair loss

I was also told to keep ferritin above 50 if symptoms are present .

Lee_maynard profile image
Lee_maynard in reply toNackapan

Hi thanks for replying

Don’t know what my ferratin level was when well unfortunately

Folate 3.1

Vitamin d 75

Ferratin 35

Serum iron 27

Iron binding sat 36%

Uibc 48

The iron study I find hard to understand

Thanks again

Nackapan profile image
Nackapan in reply toLee_maynard

Are you taking multivitamins?Folate is low

Vit D just in range

I take vit D and still sit at that range

Everyone could Benifit from taking vit D in the winter

Lee_maynard profile image
Lee_maynard in reply toNackapan

Just started taking folate and i do take vitamin d during winter.

Thanks for replying

Mixteca profile image
Mixteca in reply toLee_maynard

Vit D could be higher and folate's too low when injecting. The specialist wanted my level to reach 15-20 for maximum benefit.

Lee_maynard profile image
Lee_maynard in reply toMixteca

Managed to get my folate up to Kate teens now. doctors said because my iron study was ok the ferratin level is fine even though it keeps dropping

MrsTuft profile image
MrsTuft

My migraine doctor said I need ferritin over 80.

Nackapan profile image
Nackapan in reply toMrsTuft

Goodness.I've been told over 50 Others over 70.

I struggled to get my level up.

Highest reached 58

Vary from 45-58 on a maintenence of iron supplements ( never needed before b12 def.)

The neurologist I saw for migraines said more regular b12 and more time needed.

He was right .

Did offer propranolol.

Hope your migraines improve soon and you managed to raise your ferritin level.

Of course iron should be looked at all together to get the proper picture .

Lee_maynard profile image
Lee_maynard

thanks for replying

Showgem profile image
Showgem

do you have your full blood count figures? If these are good then your ferritin level may be normal for you.

You could always get some iron tablets yourself as they’re not expensive to improve your ferritin level to see if you feel any better.

Lee_maynard profile image
Lee_maynard

all my full blood was all ok apparently. Folate was on the low end of ok though 3.1.

Showgem profile image
Showgem in reply toLee_maynard

It’s likely the low folate that is making you feel so bad, folate is best around 15-20 to enable b12 to work properly. You could ask your surgery to prescribe a high dose for a short time or get some tablets yourself to do this. I need to take a maintenance dose of folate most of the time or my levels start to fall.

Lee_maynard profile image
Lee_maynard in reply toShowgem

think I might of read somewhere on here that even high b12 levels needs folate to work well which would explain a lot

Mixteca profile image
Mixteca in reply toLee_maynard

Yes - and good iron stores are also crucial. I had an iron infusion when my ferritin was 30 and the full iron panel showed a significant deficiency. Please seek an expert for the best advice rather than guessing or referring to inadequate guidelines that don't consider the individual and coexisting conditions.

Lee_maynard profile image
Lee_maynard in reply toMixteca

Will do thanks again

Lee_maynard profile image
Lee_maynard

I’ll definitely start the folate. Thank

You

Avocado48 profile image
Avocado48

Hi Lee

I have 3 monthly B12 injections for PA. My ferritin has been 34 for several months as I am in maintenance for Haemachromatosis but my folate was low so I started taking a Vitamin B complex tablet to increase my folate. I started taking it 3 times a week and my folate levels have risen just had a check up with my GP and all bloods in range B12 folate good ferritin 34.

Not sure if this helps just my experience.

Alan

helvella profile image
helvella

A relevant NICE Clinical Knowledge Summary changed their advice on ferritin towards three years ago.

April 2021 — minor update. Diagnostic level of ferritin level was changed from 15 micrograms/L to 30 micrograms/L.

cks.nice.org.uk/topics/anae...

I don't understand why so many labs continue to use what appear ludicrously low numbers for bottom of range.

Your result of 35 is only just above 30 and suggests that at the very least you are right at the bottom.

Add on to that, ferritin often rises a bit due to inflammation/infection despite still being iron deficient.

There is no universal best level but typically something like 60 to 100 is regarded as a more satisfactory result. And quite a number of individuals say they have felt better with their ferritin results somewhere in that sort of area.

Lee_maynard profile image
Lee_maynard

thanks a lot

am111 profile image
am111

What is the B12 schedule you are following? Often, B12 deficiency is concomitant with other vitamin deficiencies and it is sometimes hard to figure out what all are the problems. In your case, low folate seems to be one of the problems. Your ferritin is also a bit low. I would suggest 5mg/day folate and twice or thrice a week iron tablets, as iron is absorbed better with alternate day dosage. You could also take a B-complex tablet just to make sure all your B-vitamins are in place. And don't stop B12 supplementation, as it will only make things worse. Good luck!

Lee_maynard profile image
Lee_maynard

thanks a lot been have b12 injections for ten years. Never feel really well but was ok. Last 18 months have felt horrendous as of the b12 wasn’t working which I’m hoping is to do with the low side of my folate. Thanks

Rexz profile image
Rexz

Hi Lee,

Your Bio doesn't say if you've actually been diagnosed with Pernicious Anemia but I'm assuming that's the case since you're posting here and you're being treated with B12. Pernicious Anemia is a symptom or malady resulting from advanced stages of Autoimmune Gastritis, a chronic inflammatory condition. I know you may already know that but the key is "chronically inflamed". With this condition those with PA should keep their serum Ferritin at or above 100 ng/mL. The reason is two fold, one is that your bodies immune system naturally sequesters your iron stores to prevent what it thinks is a virus or bacterial infection from having access to your iron in order to keep them from multiplying e.g. kill them. This sequestration also makes iron stores unavailable to yourself and is normally a short term event. In our case the sequestration of iron is chronic and permanent. Therefore we need to keep ferritin levels higher than the normal 30ng/mL. The second is that in advanced stages of Autoimmune Gastritis your stomach acid will become reduced (Hypochlorhydria) or, as in my case, actually non-existent (Achlorhydria) thus preventing you from absorbing iron in the small intestine as part of your digestive process.

Most doctors will see your blood work and your Ferritin may be just above normal and your hemoglobin and RBC are within normal range (no anemia), therefore, they'll tell you that your iron is fine. That's not the case. There is a condition called Iron Deficiency Without Anemia (IDWA).

See my post for more information, references you can take to your doctor/GP, and a YouTube

healthunlocked.com/pasoc/po...

This may also be referred to as Anemia of Inflammation (AI) or Anemia of Chronic Disease. Here are a few more references on those.

What is Anemia of Inflammation

niddk.nih.gov/health-inform...

The role of iron in chronic inflammatory diseases: from mechanisms to treatment options in anemia of inflammation

sciencedirect.com/science/a...

My doctor, here in the US, try to keep my ferritin at 130 ng/mL (normal range is 30 - 400 ng/mL). I am tested every three months and if it drops below that I get iron infusion IVs to bring it back up.

Don't let your doctor/GP tell you your iron is fine. Low iron is dangerous and can be as damaging as low B12. However, one must be careful with iron as unlike B12, iron is NOT water soluble and is toxic at too high levels. With iron your body has no good way to get rid of the excess other than bleeding or if you have liver cancer. When my iron is low it is brought up slowly with weekly iron infusions and monitored carefully. So it's a choreographed dance that we play of iron infusion IV, test, iron infusion IV, test, etc.

Hope this helps some and best wishes, Rexz

Lee_maynard profile image
Lee_maynard in reply toRexz

thanks really helpful. Unsure about PA I’ve been told twice in the last 15 years my b12 levels is low and have been on injections through my Gp. Waiting on another PA screen to come back. I eat a well balanced diet so not sure why I’m deficient. Was told the intristic factor test isn’t that reliable. Thanks

Mixteca profile image
Mixteca

Yes! It happened to me when my ferritin dropped down to 41. B12 injections place a greater demand on iron stores and it needs to be much higher. You could have an iron deficiency now too.

Ignore GP. Insist on a full iron panel and see a specialist who understands B12 as well as iron. Message me for info if needed.

MindfulSquirrel profile image
MindfulSquirrel

I was put on ferritin tablets by my GP following advice from a neurologist and my level was 49. The neurologist advised that in light of my symptoms and my loading doses, we should be aiming for a level of 100!

The B12 injections should be helping you create new blood cells and that needs other vitamins and minerals, a key one being iron.

Lee_maynard profile image
Lee_maynard in reply toMindfulSquirrel

Thank you 🙏

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