Hi everyone. Some of you may have come across one of my posts this week and may have interacted, but if not, hi 😊
I’ve been going through a lot of the posts on here looking for answers to my query before I post this, but haven’t seen anything that covers it.
Is there anybody here that has suffered with ferritin deficiency on its own and then gone on to discover it was actually a B12 deficiency but this deficiency didn’t show up in blood work? Does anybody know if there’s a key difference between the two conditions that they could point to, based on symptoms? The reason I ask is that B12 deficiency had never occurred to me until I looked at some of the symptoms and they match mine exactly! They never really are resolved when I take iron supplements. Some symptoms improve, but others never go away. On every blood test I’ve had in the last 10 years, my ferritin is around 16-20 with no anemia. I had a hysterectomy over 10 years ago and been through menopause, so I was sent for a lot of tests to find out if there was internal bleeding, etc. All was fine. My b12 level is consistently around the 300 mark, so didn’t ever think it could be anything other than low ferritin. Can anybody point to any one thing that sets the two conditions apart?
I know I’m not great with explaining what I’m asking, so please let me know if I’m not clear on anything. Many thanks in advance 😊🙏
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MLJ2024
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Okay most of us have PA/B12D. I use this ‘term’ simply because the Intrinsic Factor (IF) and Parietal Cell test was not performed and the IF test is very unreliable.
Quite a lot of us had low ferritin and low B12 in combination. However, this is the real devil, the cut-off values to define deficiency is set pretty low. So, for ferritin, in non-pregnant women it is about 11 mg/L. As a Health Professional, I am not too impressed with a ferritin of 16-20 mg/L with treatment. What type of supplements are you taking ? If you wish to share ?
Now, here is the real spanner in the works, especially if you are U.K. based :-
Problem 1
There is no distinction between ‘active’ B12 and ‘inactive’ B12. So, between 40 and 70 % can be inactive.
Using your 300 mg/L as an example :-
If 40 % is ‘inactive’ B12 then your real result is 180 mg/L.
If 70 % is ‘inactive’ B12 then your real result is 90 mg/L.
Now can you see the First Problem.
Problem 2
Different laboratories use different ranges and cut-off levels.
So, if you lived in the Scottish Highlands their cut-off might be 210 mg/L but if you lived in the South West of England their cut-off might be 115 mg/L. This is due to Budgets, Financing and Commissioning.
Ferritin, B12 and the other B’s all work together in combination at cell level. And I would be looking around the 50 mg/L mark for your ferritin to work very nicely with your B12.
Symptoms wise, yes they can be similar. We can have a wide range of symptoms from shortness of breath, dizziness, cold extremities, burning mouth, pins & needles, painful joints, numbness, vertigo, tremors, poor balance to not being able to walk. So, your symptoms are yours and a diary is really useful.
Now, in your last post, you discussed Betaine HCl, pepsin and pancreatic enzymes. So, having the ability to chemically break down our food to extract all the wonderful essential chemicals from them. If we cannot do this then how can we absorb it ? We need stomach acid those chemicals.
Equally, if we our gut cannot contract properly how can it mechanically break down the food ? We need oxygen in our cells which is transported with the help of ferritin and B12. Plus, our nerves are coated with a special substance which is made by B12.
If we cannot obtain nutrients then how can continue making stomach acid and other extremely important chemicals in the correct quantity ? We cannot.
I hope I have understood what you were asking. You may want to consider joining the PA Society or read around the subject. Sleepybunny’s post are very informative. Hypoferritinanemia in isolation can occur but as stated there are big flaws in the testing of vitamin B12.
I, personally, would ask you to tell me how you feel, let us have a good look at you. Light in eyes, follow fingers, good feel of your body and stethoscope to your body, walking test etc etc. Lots of questions about your diet, intolerances, appetite, bowel habits. Samples to laboratory.
Plan
Right, how do you feel about a trial of Hydroxycobalamin for 2 weeks every other day ? A multivitamin and mineral. Refer to gastro and/or dietician if needed. The gastrointestinal tract is 9 metres long and I do not know everything. Never claim to.
Then you tell me how you feel after 2 weeks. I LISTEN again.
Looking at the symptoms for B12, I have all except the balance and walking issues. Having said that, I did go through a period of that last year, to the extent I was afraid to go out, but I think more to do with vertigo. It could be that that was another time I’d just had a blood test and therefore resumed my iron supplement as it improved. I’m not great at keeping up with my iron and sometimes stop taking things because I’ve convinced myself they are what’s causing certain problems. I have a bit of a phobia of needles, so even a yearly blood test is a big challenge for me.
At the moment, I take 3,000 D3 with 100 K2 with zinc, magnesium and boron from Barefoot Nutrition. They work really well for me. I take 700mg camu camu, 3 brewers yeast tablets, plus 250 ug methycobalim, 10mg iron bisglycinate with 1,000 l-lysine complex from Nature’s Best. I know straight off you’ll see the ridiculously low doses there, but never really know what I should be taking now because I don’t keep up with blood tests. I know that’s my fault 🤦♀️
I can understand the problem with the testing and active/inactive part. Also, the fact that I was on PPIs for over 10 years, together with the symptoms I have, also deafening tinnitus, that is what made me wonder is my iron low again or could it in fact be a B12 problem. I guess the only way to know is by getting more blood taken and asking for a more specific test? If it’s just worsening of low ferritin, wouldn’t high B12 make that drop lower due to uptake, or am I getting confused?
Thanks again. I really appreciate your offer to help. I think it’s my fear of needles that puts me off and if it’s a case of upping the iron with tablets I’d obviously choose that route 😂
If you have PA, it would be good to use at least 1000mcg of B12 in your supplement and sublingual may work better. Some people need injections, but others can supplement at high doses.
Hi Hockey_player 😊 Thanks for your comment. Yes, I am not comfortable with injections, so maybe I’ll try sublingual at a higher dose and see how that goes.
Thank you, I learn something new every day. I had not heard of camu camu. When I started reading, I grinned thinking it similar to the ‘goodies’ found in red cherries.
You are correct that iron supplementation (and other) can cause certain side effects. So, it is not surprising that you stop taking it. Sorry to learn of your needle phobia. A colleague once had to a coax a lady who was hiding under a bed with a cheesecake because the woman was petrified of needles.
I take 20 mg of iron Bisglycinate as well and top up with Spatone (iron water). MLJ2024, I am not into the blame game of the should have done this or that. We are all living with illnesses, just getting through each day and life.
PPIs for Gastroesophageal reflux disease (GERD) ?
It has been linked to lowering B12D. Deafening tinnitus is a symptom of B12D.
Treatment of B12D can lower ferritin but the PA/B12D must be treated. It can slowly creep on us. We manage for years, crawling along then it absolutely knocks us for six. Would you say that you have a good Quality of Life ?
Hi Narwhal10. I had to laugh at the lady being coaxed with cheesecake 😊 As much as I love cheesecake, I don’t think I’d budge even for that 😂
Yes, I had bad chest pain years ago. It was so scary I actually went to a&e. After doing blood tests and heart monitoring, they said it could be acid reflux. They prescribed Omeprazole. I was so afraid of a repeat of that pain that I took them religiously. I asked more than once after about six months if I could come off them. I was told not to as I could get a really bad relapse. Ten years later, while looking at something online, I read that it stops you from absorbing nutrients. I can’t be sure, but I think it caused me to have to get a hip replacement at only 50 years old! I was so active before and was left unable to walk without aid! From that point, everything started to go downhill. Apparently, these tablets should only be taken short term. After I read the article, I stopped the tablets immediately, and had no relapse! I am so angry with myself for not looking into what was causing all my problems, and just blindly trusting a GP’s opinion. This is why I say I have to do my own research on everything now.
My quality of life .. it sounds strange but I seem to have just got through a lot of these symptoms and saw them as ‘normal’ in the end, just used to them. For example, I’ll have palpitations and say, “Oh, I’m just anxious” Numbness and tingling, I’ll say I’ve been sitting in a wrong position. The tinnitus is so bad that sometimes I can’t hear, and I’ll say it’s my age and I’m going deaf 😂 I daren’t list all of my symptoms because I’ll be here all day, but I’ll always pass them off as ‘normal for me’.
I loved my stomach acid. When she left me I was devastated for a period of time. Just completely lost without my loving partner. Then during a casual conversation I met Betaine HCL. She's not quite the same but still loving in her own way. 😊
Oh Betaine HCl is known to pick up random strangers in the most unusual of places. Some times that love affair turns into a life long commitment. Lots of people can become emotional due to breakdowns (of lack of them in the chemical sense). If you are really lucky, Bee (for short) will treat you to anniversary presents. 😉
Thank you for your reply. Really helpful. If you don’t mind, would you explain what were the feelings in your daughter’s calves? That is one of my most recent and troubling symptoms. Was it either numbness in different places or else twitching all the time? Strange you mentioned the Doppler test because I was actually considering it as it has been really scary.
Hi Nackapan. Thank you for replying. Sounds different to what I’m experiencing, but anything unusual to a person definitely needs checking, and glad your daughter managed to get herself well 😊 I need to get some tests done and get myself sorted. I hadn’t realised until I looked into it just how bad things can get without treatment.
I take heme iron as I have also struggled with low ferritin. I was given infusions more than a year ago but I wanted to keep my ferritin up as I knew it would be hard to get another one. U almost have to be dying here (where I live) to qualify for one. So I have been taking heme iron and I can absorb that much more easily. Which is great. I test every 3-4 months and monitor it. I have PA and AIG (gastritis) which makes it hard to absorb iron . But highly recommend heme iron.
It looks like you have hypoferritinanaemia without anaemia. The symptoms are similar to B12D/PA. I have both conditions. I've just had a ferritin infusion privately with a haematologist and I'm already feeling the benefit after six days. My serum ferritin level was around 30 (for the past three years) and the infusion was to test if this was too low for me (range 11-306). The haematologist agreed that it was well worth finding out. Nine years ago it was 99. The ranges are the problem. One size, as we know to our cost, does not fit all!
Hi Orchard33. Thanks for your reply 😊 Yes, I agree, for some people, the level I have is okay with them and they don’t experience symptoms. Most of the time, I’ll just try and get through and not even realise I’m not doing very well, just dismissing things. The last few weeks though, it’s started to affect my legs, tinnitus and palpitations are awful. Need to get some tests done and see what’s going on 😊
Had several episodes of low ferritin over many years.
Was treated with iron and felt slightly better, but felt it wasn't " the whole story ".
Soldiered on, but eventually began to experience all the symptoms, including neurological, of B12 deficiency.
Had a terrible job convincing my GP that the problem could be B12, because my serum B12 levels were absolutely normal.
Did persuade GP to refer me to hospital, where the consultant admitted he "knew nothing about B12 deficiency " 🙄🤦♀️ but did allow me a trial of B12 injections.
I don't even know if I have an official diagnosis, but after nearly 6 months of 'every other day ' injections , I regained my health to an acceptable level.
Sorry, I have no knowledge of the physiology of it all, but that's my story.
Hi Ghound. Thank you for your reply 😊 It certainly is a nightmare trying to find a GP that is knowledgeable on B12 deficiency. I do feel better knowing I’m not alone in this though. I sometimes feel like even friends and family must be thinking, “Oh, now what is wrong with her? Every week it’s something else” 😂 I’m glad you’re feeling better and hope you feel even better as time goes on 🙏
I have never had a PA diagnosis, despite almost the full list of symptoms. I discovered I did have low ferritin for years however, despite my GP saying this was 'in range'. (We've all heard that one before!)It was in range but bumping along the bottom for years.
After this last discussion, when I was told just to accept I was getting older (I was 55!) and to learn to live with things, I took matters into my own hands and set up my own regime of B12 injections and iron biglyscinate/vitamin D/multivit supplements. Within 5 weeks of taking the iron, my health notably improved and I currently feel better than I have in years.
This regime seems to work for me and if I miss out any element, I suffer a relapse of symptoms.
I have no intention of discussing this further with my GP, so do my own iron panel tests every 3 months.
I think it's important to note that our health issues can have more than one cause. Something many medics have lost sight of.
Hi Kbird01 😊 Thank you for your reply. If you’re in the UK, how do you go about getting your own iron panels done, please? I really think the GPs here are what puts me off ever going and asking for blood tests. I’ve been made to feel like a pest in the past, or that everything I go through is just in my head.
I usually go to Medichecks when they have an offer on, but there are a few other private blood testing services. Just be careful of some of the high street names as these don't give a proper reading with a range. I'm sure if you posted another question on the forum or searched previous posts, there would be some recommendations for what other people have tried too.
Re: how GPs make you feel - I can identify with that as can many on here. It's a common experience, so you're in good company! 😉
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