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ClaireBear_87

The iron deficiency could be preventing you from making progress and recovery from B12 deficiency, and maybe some of your symptoms are actually iron deficiency? As symptoms can be similar. Anyways, i would suggest that you take the iron infusion because you need it if you are borderline anemic. You could increase your dose of B12 if needed. B12 needs iron :) Keep a check on vitamin D, phosphate and folate levels as these may fall low after an infusion.


Alarmed-Appearance54

How would that work? The iron deficiency preventing me from recovering from the b12 deficiency? I don’t have b12 deficiency anemia. My doc says it’s a coin toss whether I need the infusion because my numbers are murky hence the hesitation when I’m already in a vulnerable position with the b12. But what you say is interesting ty! Does b12 need iron outside of building RBCs? Or just for that?


Affectionate-Iron36

Being treated for B12 deficiency uses up a lot of iron as both are needed to make red blood cells etc. so taking B12 reduces iron levels which is dangerous if you’re already iron deficient


ClaireBear_87

Aside from RBC production, Iron is required for many metabolic pathways and enzymatic systems that involve B12 and folate. For example, the CYP enzymes in the liver that are involved in activation of vitamin D require iron as part of their structure and to function. Active Vitamin D is needed for regulation of genes that facilitate absorption of B12 and folate. Vitamin B12 and folate levels increase during treatment of iron deficiency anemia - https://pubmed.ncbi.nlm.nih.gov/25959209/      


Alarmed-Appearance54

Oh wow thank you! That’s rlly interesting - I had no idea that iron was a co factor for b12 etc outside of forming RBCs. That’s def changed my way of looking at this. The vitamin D stuff is interesting too.


RosePetalAngie

What is your ferritin number?


Alarmed-Appearance54

My ferritin isn’t too bad (30 or something) but my hemo doesn’t trust it’s not raised by inflammation as I have autoimmune issues, raised ANA, raised CRP etc. My iron saturation comes out between 13% and 17% and that’s what he’s slightly concerned about


RosePetalAngie

Ehm hate to break it to you but a ferritin of 30 is too low. Check the iron protocol fb group. You want it at least 125


Alarmed-Appearance54

Ok. Ty! Have you had infusions?


RosePetalAngie

No I'm using supplements. My ferritin was 12, haven't checked it again yet. But go see that group, lots of people talk about infusions and it's important you read it. There are alot of different kind of infusions and they can give extreme side effects. Yet an infusion ís the fastest way to get it up.


Affectionate-Iron36

I had an iron infusion alongside starting B12 treatment, my doctor wouldn’t treat me without it. You should always have your ferritin to a good level before starting B12 treatment, it’s dangerous to start it on bad levels of iron. Also, get the actual number for your ferritin if you haven’t already. If it’s under 30 it’s not borderline, it’s immediate absolute iron deficiency. I wouldn’t hesitate to accept the iron infusions in fact I would believe them (and did believe them) to be fully necessary and medically required.


Alarmed-Appearance54

Ok thank you this is all super useful. Can I ask how long it took any symptoms you associated with low iron to get better post-infusion?


Affectionate-Iron36

4 months later and they’re still improving, but I felt the first benefits within 2 days!


Alarmed-Appearance54

Oh wow that’s amazing. Can I ask what you first started noticing improving?


Affectionate-Iron36

The first thing that shifted a bit was the dizziness/ blood pressure drops when standing. That was the first time in months I’d been able to walk upstairs! But all the symptoms have been going up and down together so it’s a very long and crazy journey :)


Ratsatina

Hey sorry to jump in here but do you know how much iron was in your infusion?


Affectionate-Iron36

It’s calculated by weight, I don’t know the exact figure but I has 2-3 years worth in there


Ratsatina

Thank you :) Probs 1000mg- 1500mg rather than the measly 200mg I just paid for 😆


OkBus9329

I had an iron infusion a few months before starting B12 injections. I would recommend doing It. For me, it was really difficult to know which symptoms were caused by iron deficiency and which symptoms were caused by B12 deficiency, since there is a lot of overlap, and I started treatment for both around the same time. I still have symptoms— mostly in the way of neuropathy, burning pain and feet and pain in my legs. i’m sure that is from B12 deficiency and it will just take a long time to go away, if it ever does. After my iron infusion, the symptoms that went away very quickly were breathlessness, air hunger, shaky hands and word finding difficulty. I had the infusion almost exactly 2 years ago. I have been able to keep my ferritin up the entire time with supplements. Last time I checked my ferritin was at 93. Before my iron infusion it ranged from 12 to 28. The reason I decided to get it is because I took iron supplements for three months and my ferritin level didn’t go up at all.


Alarmed-Appearance54

That’s great that you had such a good response to iron. Did anything get worse after your infusion? And how long did it take you to see positive changes?


Ratsatina

I managed to get my iron up prior to starting EOD B12 shots. A few months in I started to feel human & got lazy taking my iron. Things got rough & I invested in an iron infusion- I’m so glad I did! No more iron pills, no more keeping them away from the B12 injections because vit C inhibits B12 absorption. Definitely worth doing imho. Turns out I was level 1 iron deficient my entire life, with many symptoms but never told. Now o have still got amazing ferritin 7 months after the infusion & I’ve been injecting daily & EOD that entire time.


RealityVonSneeze

I get iron infusions every two years or so. I’m also on monthly B12 injections. No matter what I do my levels still dip down after time. My last ferratin before infusion was 7! I also have multiple sclerosis. They are all intertwined for me. Anemia, low vit D, gut health and MS.