On a hunt to figure out the cause of my continued iron loss... Had an iron infusion in July 2021 and I'm now back to deficiency.
GP has done all they can, confirmed by private GP. The guidelines now assume iron loss is related to periods... except mine are very light and only last a day so not sure that's applicable to me.
Only thing private GP suggested was getting intrinsic factor tested but I supplement B12 and it's effective so would that not rule of PA?
My understanding is that B12 tablets aren't absorbed with PA; hence the need for B12 injections?
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WitchingHour2point0
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Some people with PA can absorb B12 orally - I can. In theory if you have a large amount of oral B12 daily you should be able to absorb enough via passive absorption - which is why doctors prescribe pills. But it doesn't work for some people with PA. There are various theories that try to explain why but B12D is so complex and, as far as I am aware, hasn't been researched enough to give a definitive answer.
Don’t be disappointed if you can’t absorb with tablets . I have P.A. ( positive IFAB test) I have tried tablets , sprays and patches , to no avail . Have to have injections . I had had P.A. for several years and already had numb feet when diagnosed.
People without absorption problems typically absorb 30 - 70 % of b12 from food. Someone with PA may be able to absorb much less, around 1 %, so supplements need to be a lot stronger than the normal daily requirement.
The efficient absorption mechanism with intrinsic factor is very limited in capacity, so no one will absorb much from strong tablets. The 30 - 70 % only works for the moderate amounts normally found in food.
An advantage with supplements, as opposed to food, is that the b12 doesn't have to be freed from the proteins it binds to in food. Some people may have a problem to separate the b12 from food, because of lack of digestive juices like hydrochloric acid in the stomach, something that could be caused by PA.
So if strong supplements work for you, you could still have PA. How strong are your supplements?
V. Interesting that tablets might be enough; I take 1000ug almost every day alongside a b complex that contains folate.
If I don't supplement they both just keep dropping.
Was folate deficient in Jan 23 so have been on supplements on and off since. Active B12 has never fallen below reference range but has been fairly close on occasions. Was 45 (37.5-188) in 2020 and have supplemented since then.
I might push for an IF test then and Google says PA and iron deficiency are somewhat linked.
I live in Victoria, BC, Canada. Injectable B12 is available at drug stores here without a prescription. It s harder to get it other places. This forum is a good place for figuring out where you can get some.
Not sure if you have ever seen my burning feet document:
helvella - Burning Feet
This is my blog page about Burning Feet. You might find something helpful there. It links to a comprehensive (though fairly short) article about burning feet. And a couple of other relevant articles. Plus a couple of links to some products which might help.
It hadn't occurred to me, until today, that B12 might be an issue! Certainly not pernicious anaemia because I didn't think supplements would help if it were PA.
You can’t know it’s not PA and as explained it seems that some people with PA can absorb by oral supplementation
There are tests but most, apparently, aren’t conclusive, particularly IFab because as often as not it results in a false negative. If you’re lucky and you do have PA, yours will show as positive. You could try that in the first instance but if you have it via NHS and it’s negative, GP may very well dismiss the possibility of PA and won’t investigate further, unless he has knowledge of how difficult it can be to diagnose
My husband did certain private tests first then presented them to his GP who then had to acknowledge there was a problem because there was no refuting the MMA level, which was the only “conclusive” one because it was quite over range and coupled with very low ferritin, high MCH and MCHC he was diagnosed as officially B12d, possibly caused by PA or possibly poor absorption. He was given an iron infusion and B12 injections by Dr Klein
His autoimmune tests were negative so we’ve been told it’s unlikely PA but poor absorption caused by (probably) dysbiosis, according to Dr Klein
Getting a diagnosis is very complicated when it’s not a clearcut situation. My husband had very high levels of B12 from supplementing which were sometimes over range but this doesn’t rule out PA. I had a niggling feeling something wasn’t right, so I’m glad we persevered and uncovered the problem. Unfortunately for now, cause unknown
NB regarding MMA, over range isn’t conclusive and therefore doesn’t automatically mean PA.. Other things can make it high so it must be considered in conjunction with other factors and blood tests
Just looked at an MMA test and cripes it's not cheap!! 😯
I think I'll pester the GP to see what they can do; as it stands I can absorb the B12 I'm taking so there's no immediate rush to sort things and I can see how far I get with the NHS.
Something (many things, perhaps) is happening causing me to not hold on to any of my nutrients, which is a concern!
I'm glad you were able to keep fighting for your husband; it's emotionally hard work battling the GP!
MCV: 84.9 (83-100) so also looks ok in terms of PA.
I've been tracking my B12, ferritin, & folate as part of my thyroid care, testing every 3- 6months or so.
In 2020 when I was diagnosed my active B12 was 45 (37.5 - 188) and I've been able to get it up to 113 with regular supplementation.
It was back down to 81 at the end of last year but I've been lazy with supplements so expected it to be low.
I've been supplementing fairly consistently for a few months now but haven't retested as I'm not sure it's worth it.
GP did serum B12 recently which was 483 with >200 deficiency not likely to be present but I don't put much stock in the Serum tests. Much prefer active.
Folate was 9.2 (3-20) but again, I've been supplementing pretty consistently for a few months.
The fact that you need to supplement at all tells a story and even though your active B12 rises with supplementation, it being good at good levels isn’t the whole story. Specialist did explain why active B12 shouldn’t be relied upon but I can’t remember what he said. At the moment my head ‘s full of new facts and figures and being hypo too hasn’t done my brain any favours. I find it hard to understand and retain info. Plus, it’s complex
Of course I don’t want to rain on your parade if you feel you’re doing well but if you suspect something more than a deficiency that’s due to thyroid issues, perhaps think about digging deeper
Menorrhagia is a very common cause of Iron deficiency. It doesn't take much blood loss to 'tip the balance'. One millilitre of red cells contains 1mg of iron. Normal daily diet contains about 20mg of iron, and it's certainly not all absorbed either.
However, it's a really bad idea to try and 'take control' of your iron status without medical supervision, because it's too easy to overdo it.
I know enough to not mess about with iron without proper tests! GP has put me in for an iron transfusion which will be a delight!
I just don't want to forever be on the roundabout of slowly declining ferritin and waiting for it to get sufficiently low enough to allow NHS to give me a transfusion.
Had to sort my own thyroid out, took 3 years!, so reckon I'll manage B12 too. 😂 Hopefully it'll take me less time though!
iron infusions are very effective. You're wise not to mess with stuff like iron. I've seen enough tragedies from children popping mum's iron pills, and the results are absolutely horrible.
Keep in touch with us. We all learn from each other.
Just to add to that. I am getting more and more concerned by the huge promotion of gummies for everything under the sun. Including iron. Often on promotional display stands in shops and looking more like pick'n'mix than potentiality dangerous medicines.
They are a positive invitation to children. And they are sweet and appealing.
A very good point, well made. I hadn't heard of gummies for iron, but nothing surprises me. I hope the gummies are made from gelatin, given that it's a by product of slaughterhouses, hooves, skin, various other dodgy bits that would otherwise end up in sausages!
Free radicals are terrifying. A child died from iron poisoning a few miles from where I'm sitting. Mum had picked up her Ferrous Something-or-other tabs, and the child swallowed them within the hour of her bringing them home.
My children are picky eaters. One would just eat beige food forever if left to her own devices. 😂 Trying to find them a supplement that doesn't include iron was remarkably difficult.
I did OK for many years with PA taking sublingual B12 (1000mcg) daily. But at some point it stopped working and my toes got sore and tingly. Then I had to use injections.
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GP has put me in for an iron transfusion which will be a delight! 
If I got an active b12 test done privately and it showed I was deficient, would my GP give me injections?
B12 Levels
How do I know if I have PA?
I was diagnosed with PA now my prescription just says B12 deficiency
