Over the past year I have had frequent respiratory infections and when not ill, I am always exhausted. I often need to stay in bed on my days off recovering. Alongside the exhaustion and frequent infections I have dealt with nausea and gastric problems which I always thought were due to IBS. I faint all the time and have struggled with anxiety and depression throughout my teens and early 20s. I can't really do exercise as I find it too tiring/ get ill too often.
I was diagnosed with chronic fatigue syndrome when I was younger, so always chalked these problems up to that and dealt with it. However, this year it got unbearable and I was in and out of the doctors saying something was wrong- they suggested it was due to a bad winter. I am a young woman in my mid 20s so it is frustrating to feel so limited all the time.
Subsequently, I was hospitalised with pneumonia. It took many weeks to recover. After that, I requested blood tests to see if there were any underlying causes for these problems.
The results came back that I have low ferritin (9 ug/L) and low B12 (95 nl/l). My doctor has prescribed me oral cyanocobalamin tablets (50 micrograms) twice a day and ferrous fumarate (210mg). The NHS suggest you automatically do a test for intrinsic factor antibodies/ pernicious anaemia if your levels are under 100.
My doctor said that my deficiencies are probably due to diet. It was only when I asked about the intrinsic factor test that they then agreed to test for it.
On the one hand, I am happy I now have supplements but I'm worried that oral supplements won't be enough and injections might be better.
Is there any reason the dr wouldn't prescribe me injections? Or why they also didn't seem that worried about any potential cause of these deficiencies beyond diet? I'm not vegan or veggie so it seems strange to me. I find it hard to advocate for myself in these situations and always worry I'm being pushy.
Any advice on how to move ahead with this kind of thing on the NHS + how to deal with low B12 and ferritin in general.
Thanks in advance.
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bakedbean5007
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Thanks so much for all your advice and suggestions. It's good to feel like I'm not overreacting here!
They asked if I ate a lot of liver or red meat. In the moment I said well, not really. But then I looked up a B12 rich diet: I regularly eat dairy-free yogurt and milk which are fortified with b12, eat cheese almost every day, eggs every other day, and eat meat or fish at least every other day.
So I really don't think this is due to my diet dr also said they were giving me the largest dose of b12 possible but when I looked it up it seems like 50mcg is the smallest?
On my test results it says >200 ng/L deficiency not likely to be present, between 100 and 200 possible deficiency and <100ng/L consistent with deficiency + send intrinsic antibody test. So yes it was the same range as what you have written here.
"My doctor said that my deficiencies are probably due to diet."
But if you're not vegetarian or vegan and regularly eat animal products then that doesn't make any sense?
A B12 level of 95 ng/L is very low and is not going to happen by accident. In the absence of dietary reasons, this clearly suggests an absorption problem and indicates necessity of prompt treatment, likely with injections.
I am vegan and my maintenance B12 is usually more than 50mcg twice a day, thats really only a maintenance dose, not one you would use to quickly and safely correct a significant deficiency, which seems to be present based on your B12 level.
Not a big fan of these huge iron doses, my personal unqualified opinion is that lower doses taken alternate days may be more effective and avoid stomach upset and inflammation which will end up blocking iron absorption, exactly the opposite of what you would want. I have never dealt with iron issues though so others may have better practical suggestions.
Yes, reading all these responses I'm also concerned why they gave me such a low dose. As I said in another reply, the doctor told me that they gave me the highest dose possible but a few google searches suggest 50mcg is actually the lowest...
I really don't know why injections weren't suggested and I'm considering going back and asking for some clarification on all of these things. I don't want to wait two months until my follow up blood test still feeling terrible every day
Thanks very much for the insight and advice, its very helpful.
"the doctor told me that they gave me the highest dose possible but a few google searches suggest 50mcg is actually the lowest..."
To be frank, your doctor sounds severely clueless - I can easily order a 10,000mcg oral B12 supplement online right now from a local health store, no prescription needed.
It took a while but I did manage to locate a super low dose, 10mcg supplement, which I like to use with meals, but its only going to work for someone with working intrinsic factor and no absorption issues.
In your next appointment with this doctor you might want to point at their elbow and ask the doctor to identify it, then point to their bum and ask them to identify that, then ask if they know the difference between the two. This should reveal a lot
So, is there any Family History of B12 deficiency, gut problems or Autoimmune Disease ? I apologise if you do not know.
From your Medical History
Chronic Fatigue or its medical name myalgic encephalomyelitis (M.E.) So, I will break down the meaning :-
Myalgic - muscles
Encephalo - refers to the brain
Myelitis - refers to the spinal cord.
It is not merely feeling Tired All the Time. It can indeed be a misdiagnosis for autoimmune diseases or PA/B12D and Iron Deficiency Anaemia.
Moving on, IBS is an umbrella term once the usual suspects have been investigated such as Crohn’s disease, Coeliac Disease, H.pylori. Where you will have had endoscopy, colonoscopy, barium enemas, gastric transit tests and whatever else. So, you have seen a gastroenterologist.
Now, frequent respiratory infections and pneumonia, bless you which were treated with oral and possibly intravenous antibiotics. They are very useful but can also destroy the good bacteria in the gut. The ones that metabolise our vitamins and minerals. But I am also thinking along the lines of have you been tested for Lupus, Sjorgen’s (pronounced Shaw-grins) disease ?
So, a good Plan of Care is:-
1) Symptoms diary - a tick chart is easier.
2) A food diary - we know it is not diet related.
3) Like Nackapan said get hard copies of your results.
4) Pop the name of each doctor in a diary with the time of each interaction.
5) Ask the next GP for :-
a) Coeliac Disease test if not done already, please ensure you have been eating gluten for 6 weeks.
b) A H.pylori stool test.
c) A Small Intestinal Bacterial Overgrowth breath test.
d) A Referral to a dietician. They are the professionals in vitamins, minerals.
e) Do not be afraid to describe your bowel habits frequency and urgency and describe them. Size, shape, consistency, colour, odour. Take photos if needs be.
e) Push for loading doses of Hydroxycobalamin as it is affecting your Quality of Life.
f) Tests for Lupus and Sjorgen’s include :-
CRP (C-Reactive Protein) looking for inflammation.
ESR - Erythrocyte Sedimentation Rate also looking at inflammation and ANA - Antinuclear Antibodies.
This is to exclude or include, I am by no means saying you have either but it would be lovely for you to have comprehensive tests. You should have already had Thyroid testing. So, have those in hard copy too.
I did note that you are young woman in your mid 20s and it must be frustrating to be limited all the time. My heart goes out to you. You do have to be assertive and 30 minutes after you have been pushy or even torn the doctor to shreds, they will be so busy with another patient that they certainly will not remember. So, I hope that is of some comfort.
There is a private naturopathic doctor who was a GP who specialises in M.E. and knows all about essential micronutrients. However, due to confidentiality I will not name them on the main page.
If you have an absorption problem, your ferritin and B12 are very low indicating that you do, then you will not be able to utilize oral B12 or Ferrous fumarate. At your B12 level I' m very surprised your GP is not assuming PA and treating accordingly, prescribing injections of B12. With your ferritin level you need iron replacement. Short of a ferritin infusion which would have to be prescribed by a haematologist, you could take heme iron (taken by people on this site) which is more readily absorbable through a much larger proportion of the digestive tract and does not cause digestive problems. I haven't tried it yet but I will do over the next couple of months. Iron is an issue for me with my variety of PA.
did you have your intrinsic factor done? Also you should test for anti-parietal cells and have an endoscopy to check for autoimmune atrophic gastritis. I was just diagnosed with AAG and PA last September, also had low B12 (63) and in January found I was also low ferritin (11). I’ve been on weekly B12 injections since October and iron pills since February. I feel SO much better. I also have hashimotos for over ten years and am on synthroid. My only issue now is thinning hair and some mild vibrations in my feet.
I just want to add to everyone's already great advice, that for an IFAB test, one should not have B12 supplements in their system as it will muddy the waters.
I agree you need injections not tablets. But not until after the IFAB test.
Good luck to you. My PA started when I was 19 years old and nobody believe me until I was 60 years old. That's how long it took me to get doctors to believe there was something wrong with me. And many antidepressants, Cymbalta, gabapentin, Xanax, pain killers. None of which did anything but make things worse. Don't let them treat you're depression and anxiety with meds. B12 had helped me with that tremendously! Even after 40 years of damage, b12 has helped with everything. I have permanent sensory, cognitive and physical damage. But it had improved considerably maybe 65% -70%. So since your are young, you will improve greatly if not completely, but you will need b12 injections for life. 🩷💉🩷
Regarding your dangerously low iron, I'd insist on a full iron panel to confirm what looks like a significant deficiency.
GPs are clueless about both, so I'd get all the PA tests done as recommended and then see an iron & B12 specialist who knows what they're talking about (message me for details). You may need an iron infusion as supplements may not be that effective and would take much longer if they did work. I think the threshold for an NHS infusion is 10.
If you get B12 injections you'll really need good iron stores for them to be effective.
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dr also said they were giving me the largest dose of b12 possible but when I looked it up it seems like 50mcg is the smallest? 
New and confused
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