symptoms flare-up

[MuppDog]

I have been battling an iron deficiency since November, that seems to be a result of my correcting b12 deficiency with shots. I have not been taking the full recommended dose of iron until about a week ago. My ferritin is 25, which is up from 14, but still deficient. The last 3 weeks or so I have notice some dormant b12 symptoms (nerve pain in hands, feet, and right arm. Weird eye blurriness) flaring.

Have any of you had b12 symptoms reappear (despite continued regular injections. Weekly in my case) because of a new onset iron or cofactor deficiency? I am hoping my body is just telling me it needs more iron for the b12 to do its full magic.

[Nackapan]

That can definitely happen.Took me neatly a years to stabiliad ferritin and iron levels.

[Orchard33]

Your ferritin is deficient. 30 is considered (not primary care) borderline deficient. I asked for a private referral to get a ferritin infusion as I'd reached an improvement ceiling after a year of EOD. At that point ferritin was around 30. The infusion has been well worth the money. In fact, I have my consultation with the haematologist this evening. More soon.

[Gambit62 Administrator in reply to Orchard33]

Orchard33 please note that whilst ferritin is generally a good indicator of iron status it does not tell the whole story and should be used as a marker for further investigations, before assuming that the issue is an iron deficiency - eg do a full iron panel first. There have been a number of cases where patients have suffered from iron toxicity as a result of being treated purely on the basis of ferritin levels.

MuppDog PA patients may have issue with absorbing other micronutrients - iron and folate are the most common. It may be that that you had an iron deficiency that was masked by the B12 deficiency or whose development was masked by the B12 deficiency. As the symptoms of both iron and B12 deficiency overlap considerably it may be that you are experiencing iron deficiency symptoms as well as or instead of B12 deficiency and unravelling the two may not be possible. The timescales on which people re-experience B12 deficiency symptoms can vary considerably so may also be that weekly B12 isn't sufficient for you.

[Orchard33 in reply to Gambit62]

I appreciate your corrective reply. What I'm learning is that B12D and ferritinD are, in some people, crucially interlinked. Like so many, I'm feeling my way as I find adequate treatment for this disabling condition. In the process I find myself having to challenge the accepted protocols on both B12D (as we all are) and ferritinD. I know that for me the ferritin range is problematic. On further research I found that variations in acceptable numbers was worryingly inconsistent. The issue of blood count ranges is a minefield, especially for those of us without scientific or medical knowledge. It leads to trial and error because often it's the only way forward. The haematologist who was willing to help me is more nuanced about FBC numbers and has the latitude to experiment. And, of course, I'm paying. So far, only very positive effects. I think that the blood aspect of B12D/PA is very important. I understand that iron toxicity is a serious condition. FerritinD (I'm also aware, rather confusingly, of the condition Hypoferritanaemia without anaemia, which is what I seem to have) is also a serious life-altering condition that is remarkably and disconcertingly similar to B12D/PA. I'm between the devil and the deep blue sea, albeit supervised now (I'm relieved to say) by a haematologist!

[MuppDog in reply to Gambit62]

Thanks. Yeah, I am certainly willing to up my b12 if needed, but it absolutely has not been an issue until the iron deficiency became an issue. I did not have an iron deficiency prior to treatment, but I know my drop is not uncommon. Per your point, I have had several full iron panels along the way (which I am quite fortunate for). I am having folate checked this week also.

I just really want to get the ferritin to a more stable level before adjusting the b12 further. The good news is, I have a fantastic haemotologist 😄.

I was more just wondering if anyone else experienced a healing “ceiling”, as it were, when having another cofactor like iron or folate drop in the middle of treatment.