Ferritin and B12D/PA

[Orchard33]

Some time ago (on this forum?) I read that 80% of PA people had peripheral neuropathy and 20% did not. I have dizziness, brain fog and tinnitus but not PN. I believe the above are related to the central nervous system rather than the peripheral nervous system.What I'm discovering in my case is that the PA form I seem to have manifests as low B12 and low ferritin which makes it perhaps more blood than neuro based.

I've noticed that there is more discussion of ferritin on the forum recently and I've certainly contributed to that discussion. Do those who have low ferritin (even if within the highly questionable ranges used) represent this 20%? This is where my thinking is headed. All contributions gratefully received. This is a question I will be putting to the haematologist I see privately at the beginning of April. I have a growing list!

[Nackapan]

I don't rember the post giving those percentages.

I think ferritin levels are often ignored by G.ps unless you raise it.

They obviously look at the whole iron picture.

Low ferritin has specific symptoms .

My central nervous system was / is the most affected .

The peripheral nervous symptoms were the first to improve on b12 injections.

My ferritin was 61

But dropped to 29 after loading doses of b12.

New symptons were a direct link to this drop.

Restless legs at night

Heart palpitations

Breathless

Hairloss

In my case went when after prescribed iron ferritin got to 48 ( range 9 upwards

Was advised to keep it above 50.

Better still around 70

Not sure if in that 20% you mentioned.

As all who have an absorption problem of any sort will find other things low .

VitD

Folate ect

As well as iron. Most common

Some think iron is used in healing .

I do as that's what happened to me .

Never needed iron supplements before .

On no other meds.

Also of course if a large dose of b12 needed othef things go out of whack.

Hooe that gives you more to mull over.

Alot is unknown

[Orchard33 in reply to Nackapan]

Thanks very much for your teply.The haematologist did agree that increased B12 intake will mobilise more iron and that process will up the ferritin demand. Interesting.

[wedgewood]

I really wish you the best of luck with getting good advice and information, because there is much ignorance about P.A. even with specialists .

My peripheral neuropathy ( numb feet) was the first symptom to appear , when I had what turned out to be Pernicious Anaemia. Then came the “ funny turns” ( random palpitations ) GP said there was nothing wrong . The numb feet diagnosed as idiopathic Then came the exhaustion , breathlessness , confusion, and anxiety . Again nothing wrong . ( sort of intimated that I was a Hypochondriac )

I won’t bother you with how I managed to get the diagnosis , ( positive Intrinsic Factor Antibodies. ) but it took a long time and was expensive , involving private consultations .

After self - injecting, because 3 monthly jabs did not help me , All symptoms gone now except the Peripheral Neuropathy, which I guess is now , after 10 years , irreversible.

Just to muddy the waters — I have always had high ferritin . Never had low iron anaemia .

[Orchard33 in reply to wedgewood]

Thanks for your response. You have had a long, hard battle and you've certainly inspired me on my journey as well as providing precious information. I regard you as a pioneer.I'm trying to explore why some of us have normal/high ferritin, perhaps usually with PN?, and others have low ferritin but little or no PN. This is what I want to understand. Every bit of info is so useful in this quest.

[Asselchen]

I'm always anaemic due to low ferritin, but I have polyneuropathie, not dizziness or tinnitus.

[Orchard33 in reply to Asselchen]

It is an awful condition. I do hope you'revreceiving treatment, Asselchen.

[Calise]

I have low iron levels and no PN. Like you I had brain fog (aphasia) and tinnitus. The only nerve pain I had was bladder pain. On diagnosis, my ferritin result was 'normal" at 9 (with microcytic and macrocytic anaemia) and after starting to SI EOD, I found the restless legs that I'd had for so long increased and I had burning feet too, until I supplemented with iron.

The restless legs now gone along with all the other symptoms. I now SI approximately once a week, the only symptom to come back occasionally is aphasia (the inability to remember words).

Good luck with the haematologist.

[Orchard33 in reply to Calise]

I don't what range is being used for ferritin but on my range 9 looks very, very low, Calise.

[Calise]

I can't remember the range off the top of my head but I remember being told I was just a little bit anaemic and should wait to see if it sorted itself out. I said no way, I've been unwell for 15 years! I'll take the ferritin tablets thanks! 🙄

[ReallyWondering]

I have peripheral neuropathy and low ferritin. However, since starting weekly B12 injections 4 months ago and iron supplements a few weeks ago, the tingling in my feet are definitely lessening. I have PA & AAG