B12 and Ferritin

[Orchard33]

I said I would post after my haematology consultation. I had a ferritin infusion in February after suspecting that I was ferritin/iron deficient as a result of research into ranges etc. I discovered that 30 can be regarded as ferritin deficient, a lot more than the bottom of the range 11 regarded as 'a normal result' by primary care. I had a private referral. I summarise the consultation as follows in my own words: the bottom line for me is that both B12D and ferritinD are a consequence of my stomach and gut being unable to absorb both nutrients, probably for different reasons (and a lot of other things as well). I began B12 replacement in December 2020 and in Jlate 2021 realised that even monthly injections were not sufficient to pull back the B12 deficit that had almost certainly begun at least 4 years earlier, the time taken for B12 stores in the liver to be used up. I went on to EOD SI and accelerated a process begun when B12 replacement began, which was the utilisation of ferritin in my body, the level of which was already impacted by poor absorption. This acceleration can also be attributed to the use of Omeprazole for five years from 2015. As the ferritin was used up by the influx of B12 to make good blood and subsequently myelin sheaths for peripheral nerves (amongst other things), I became ferritin deficient and the healing of my body ground to a halt. I recognised this in late 2023 as B12D-like symptoms returned. I knew it couldn't be B12D. That's when I began my researches into ferritin and decided to test my hypothesis that I was ferritinD. The haematologist was willing to support that. During the consultation he showed a graph plotting my ferritin level from 2015, the earliest blood test available, when it was 99, until the B12 injections began at the very end of 2020, at which time they began to fall off a cliff, a dramatic illustration of what happens in a body desperate to heal. The level bounced along the bottom for two years (29-31) until the infusion. The haematologist emphasised that there is no intrinsic link between the causes of B12D and ferritinD other than malabsorption , but that deficiency and the replacement of B12 will lead to ferritin being sucked up until there is little left, with subsequent anaemia (ferritin is the protein that binds to iron so that iron is rendered non-toxic and can be used by the body. It also regulates iron use). I will be monitored in four months with a full blood test including an iron panel and a further discussion with him. He asked me to begin using a sub-lingual iron spray in two months to help maintain iron levels. He was excoriating about the use of PPIs. He also said that ferritin infusions, if overused, can lead to other utilisation problems in the body, another example of how unbalanced the body becomes when there is any deficiency, in particular life-essential B12. I'm glad I've done it. It answers many questions for and gives me a much clearer picture of what I'm working with.

[MuppDog]

thank you so much for this! I have had a very similar experience. It’s maddening trying to keep everything in balance, but I am confident I’ll get there

[B12life]

This is awesome! thanks for sharing. makes me want to pay closer attention to ferritin!

[Clare184]

Glad you managed to get the infusion, it is all such a tricky balancing act but hopefully with a good stock of iron you'll begin to feel much better again.

[Orchard33 in reply to Clare184]

Thanks Clare184. I already feel much better, nearly seven weeks in. The missing piece of my particular jigsaw for the time being.

[Phoebebuffay1977]

My ferritin is currently 7 and has been for around three years. I was recently referred for my first iron infusion but cancelled it due to fear of the side effects listed and after a discussion with the transfusion nurse. I SI at home every four weeks via GP and have done for almost five years now. I have never seen info about ferritin lowering when supplementing with B12 so will definitely look into this. In the meantime I’m using sublingual Iron, Vit D and K2 and Vit C as I know I don’t absorb anywhere near (if anything) of these vitamins orally.

[Orchard33 in reply to Phoebebuffay1977]

I too was anxious about side effects. Too much info when I googled. I had none, or none that I could attribute to the infusion. The first month was rocky. It was as much a shock to my system as beginning B12 shots. I expected that. The body radically rebooting. And now, after 7 weeks, I'm so very glad I did it.

[Phoebebuffay1977 in reply to Orchard33]

Thank you for your reply. Unfortunately those who do get side effects are not ones I would like to increase or have (severe anxiety, chest pains, feeling not like oneself). I was also at higher risk of allergic reaction so they’d already factored that in with a longer slower infusion. I just wasn’t in the best place to go ahead with it. But I do wish I’d not read any information about it!

[Orchard33 in reply to Phoebebuffay1977]

I so agree. Sometimes it's more helpful to know less rather than more. And when you say you weren't in the best place to go ahead with, that is such an important consideration. Sometimes it takes a while to get there, and rightly so.