Had a massive realisation after getting a diagnosis of ME and not feeling like it fit/refusing to accept it. As we all are, I'm just trying to piece together this puzzle as GPS dont seem to bother
Now realise I have chronically low FERRITIN. Doctors only look at the serum iron (similar to how they only use serum b12 in most cases to assess deficiency) in giving a diagnosis of iron deficeincy anaemia. HOWEVER, low ferritin IS iron deficiency (stores of iron in your body) but my GP seems to overlook that completely when I go in with heart palpitations,angina type pain and extreme weakness and dizziness (all symptoms of anemia). Folate is linked as well as the gut... all very relevant and interesting to PA sufferers
I am unable to raise my levels much despite supplementation and diet but now find B12 deficiency plays a massive role in that. Please see these articles just to name a few, important expecially for women
Another interesting note is that the original method )before medication was invented) to keep PA sufferers alive was feeding them very lightly cooked liver... very high in iron? Seems to be a link here
It scares me that GPs are routinely ignoring the blatant evidence patients like us present to them. That we have to be our own medics and also advocates really bugs me. We know our bodies better than anyone else, we instinctively know when something's not right and we're left to fend for ourselves.
Similarly, I was deemed 'pre-diabetic', which ignored the evidence/my shopping list of debilitating symptoms, the worst being constant neuropathic pain. I not only rejected that opinion, of somebody who'd never even met me, I was outraged and told the surgery this was a misdiagnosis.
I've only self-diagnosed PA in recent months and had been diagnosed with iron deficiency years ago, and Vit D, so the B12 deficiency shouldn't have come as such a surprise. Anaemia runs in my family, so I think it's a case of malabsorption for all of us.
I'd been taking Vit D and iron for years without really understanding the nuts and bolts behind it. Now I'm having to learn everything from scratch and making adjustments accordingly. I've started EOD with iron tablets and when they run out I'll buy a more suitable and absorbable form and have doubled my Vit D intake. I'll share some links if I can find them.
Having read that first article on SFG I can see more clearly why my iron's been so low! I reckon I've been low on B12 for years...they really should include this vital aspect of healthcare/preventative 'medicine'/biochemistry in doctor training.
Yes, as your helpful articles explain, there is are interconnected dependencies between B12, folate and iron (ferritin).
It why GPs must check all three if they suspect anemia. But is should also include a CBC to check for enlarged (macrocytic) or shruken (microcytic) anemia. B12 and folate is usually associated with Megaloblastic anemia, which is a form of macrocytic anemia. And iron deficiency anemia is usually associated with microcytic anemia.
The CBC should've revealed if you were anemic. Then the folate, ferritin, B12 levels would've assisted the GPs diagnosis.
Were you able to get copies of your blood test results? Posting them here may get you some good replies.
Yes the b12 enlarges and the iron shrinks the cells so it cancels eachother out giving the appearance of a normal size cell. Another thing my GP overlooks when he tells me all is normal. Is the CBC the same as FBC?
Hi.Very interesting what you say about pre b12 shots era, that people were fed almost raw liver. I just about remember so must have been young, being taken for blood tests at a hospital and as a result being regularly fed almost raw liver by my mother. I was diagnosed with PA in my 50s after collapsing with b12 levels in low 70 mark. GP and practice nurses looked totally baffled when I ask if the 2 are linked.
Many other symptoms of PA were present for many years before diagnosis.
Sometimes I wonder if we have made any progress in medics understanding of PA.
Yes doesn't seem like it does it, it's such a serious issue and we can actually die left untreated that you would think the medical profession would take it more seriously. I only made the connection yesterday that the healthiest I've ever felt was in pregnancy. Obviously not losing blood in that time and it just clicked. Problems started 20 years ago, extreme weakness exhaustion and hair loss after traumatic period in life. Iron was extremely low and always has been but never been taken seriously by Gps. Only when I became extremely ill back in October and someone told me about Pa, I'm now realising the link. Is PA a result of iron deficiency, have to study more but I think it's a disgrace if we are left becoming totally dependant on b12 injections when this iron issue could have been easily treated first. Is it a blood disorder resulting from lack of iron ? I have so many questions now
Hi Racheal 7000PA is when you're unable to absorb b12 from food due to a lack of intrinsic factor in the stomach. Its an autoimmune condition. I hesitate to go into further detail as may not be 100%accurate and there are those using this site far more knowledgeable on the facts rather than my approximate understanding.
One fact I'm sure of, most people with PA have taken their intake of b12 into their own hands because insufficient is given by health service.
I know for some its very much an autoimmune illness and they have the classic blood test results.
I'm literally just thinking out loud. I don't have intrinsic factor antibodies as I know many of us dont but we do still have PA. I'm wondering if there are different causes/ ways to treat PA as we all differ so much and vary in approaches to what makes us feel and get better (injections are definately needed as I don't seem to absorb). Still trying to figure out what all this PA means as I know many have the classic symptoms and can get a diagnosis ie IF antibodies, enlarged red blood cells. I have normal size cells (as iron deficiency shrinks them and b12 enlarges - cancelling that out) and no IF antibodies so no diagnosis for me as I'm already SI now. I also had a normal serum b12 reading although I had all the symptoms of b12 deficiency plus all the classic anaemia symptoms which had gotten very severe prompting me to take action with SI.
Its all very complicated, as I say just thinking aloud, seeing what others think/say. Still trying to work it all out, is this possibly why GPS are so clueless/reluctant to diagnose as we dont all show the same kind of blood results they expect.
Nice guidelines advise that people should be treated when they have symptoms despite having normal serum levels but no GPS I know seem to follow that. If NICE is saying that surely they recognise there are different manifestations of this illness and possibly causes?
Totally agree re Nice. When I mentioned this to my gp he didn't disagree but simply said he was bound by ICB for our area🤔.Best he offered was 8 weekly,which wasn't much as had severe neurological symptoms. I manage on 4 weekly using my own sources.
NICE guidelines contain this statement (or similar):
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
I'd expect your ICB guidelines to have a similar statement. If not, they should be criticised until something like that is added. Indeed, lack of a statement should be grounds for getting them withdrawn as unethical and unprofessional with the potential to cause injury and being disrespectful of patients, etc.
Get hold of the guidelines and complain in writing.
After first suffering low iron in 1987 and most recently for the past 7 months, I'm now heading for a Ferrinject Iron Infusion on Monday with renewed optimism and hope for the future, having watched the video! Thank You Rachel7000
Will do. However from my own experience it's no overnight cure as it took eight months for the last one I had in August 2021, along with 5 units of blood, to make me feel better before it then started to go downhill again in August 2022 to where I am now and fairly desperate! Maybe it's a case that I'll need them more regular going forward! LOLS
So it's something on have a to keep on top of forever then? Did they say what is causing your low ferritin, do you have gastro issues.? I'm still in the dark about my cause, can't even get the doctor to acknowledge its an issue and is causing me so many terrible symptoms
Nothing helpful to add. Just wanted to offer my support and that I'm proud of you. What you doing is exceptional and takes courage. The work done by some in the medical profession is exemplatory. Fact is general practitioners were at the top of the class.
Interesting. When my B12 deficiency was first discovered we also discovered my ferritin to be low and my folate. I have been injecting with B12 every three days for a year and a half and neuropathy is nearly gone (I get a double whammy of neuropathy through Sjogren's Disease). My folate has increased with oral folate supplementation. However, the ferritin has been a bit of a mystery. We thought the source of bleeding had been discovered and was corrected. That procedure along with low dose oral iron supplementation raised my ferritin to over 70 from a starting point of 11. Many of my low ferritin symptoms disappeared and I was feeling great. However, we slowly tapered off the iron supplements and after being completed off for 6 weeks my ferritin continued to drop. I am back on a small dose and waiting to retest in a few weeks. GI doctor, hematologist...all stumped. Possibly looking at a capsule endoscopy and/or bone marrow biopsy to see what is going on.
Yes im wondering if lifelong iron supplementation is also needed for some of us like the b12, and if so wouldn't this be some sort of blood disorder. Who knows, I certainly dont, it really is a maze this PA journey
It's all so confusing and interesting at the same time! My neurologist (who treats my PA) seems to think all these deficiencies are linked to my new Sjogren's diagnosis, but he is the only one that has seemed to think there is a connection so far. However, he is also an amazing doctor and tends to look at the big picture/whole person so I definitely trust him.
Yes, very rare! He was the one that put me on B12 injections and suggested a learn how to self inject because it would be cheaper for me. He also prescribes enough for me to do them as often I feel like I need. Shockingly rare!
I was being investigated for breathing issues in 2016, so getting more and more breathless during this period didn't seem to raise any concerns. Eventually diagnosed with a paralysed diaphragm, but eventually as I was at a stage of barely be able to do anything, a registrar sent me for a blood test and was on the phone the next morning to get me in for a blood transfusion. My haemoglobin count was 6, and my ferritin 3. I had another transfusion 2 weeks later as my levels went down again. My GP panicked a bit as he had said my B12 was ok at 158. and I definitely wasn't anaemic 6 mths after my last blood test..I took iron tablets for a year after that as another GP in the practice said she wanted my ferritin level up to 100.
Jump forward 6 yrs and at a pre op assessment my ECG was obviously showing a problem. Have now seen a cardiologist who says he thinks the problem could be a result of being severely anaemic. He described me as being seriously unwell with my haemoglobin count being so low, which could have damaged the heart.
Now waiting for results of CT and MRI scans to identify exact where the problem is, but no-one ever indicated that there could be a long term problem from severe anaemia at the time. At least there was a recognition that ferritin levels are important aswell.
in reply to
Glad you know what was causing all the problems but sorry it may have caused damage. I too have had a lot of heart problems- angina pain, extreme dizziness, weakness, couldnt even lift the washing out of the washing machine or go from one room to another, terrible fluttering and palpitations and a fast and erratic heartbeat, feeling like I am 'air starved' and cant get enough breath. Ferritin is very low but no one seems to listen. Getting a little better after supplementing for 4 months eating plenty of meat and liver (that has its own problems I know with cholesterol etc but the iron is a more pressing issue).
No one seems to take it seriously as they should, it causes immense problems with the heart and brain function. Probably always going to have to watch our iron, supplement and take a lot of it via diet. My grandmother recently had a transfusion, it was overlooked by GP and when she ended up in A and E they rushed her in for a transfusion.
Apparently my iron is 'normal' but my ferritin (stores of iron) are low. Can I get anyone to even acknowledge there is a link...no
I do feel for you. I had, and still have sometimes, that 'air starved' feeling. The difference between breathlessness, and 'can't get your breath'. It is quite frightening. It started after I had a fall, broke 2 ribs and then had a haemothorax ( blood in my chest cavity), After hospital stay and chest drain, I kept saying my breathing wasn't right and was told it was anxiety breathing ! It took 2 years before I convinced the GP, who couldn't find anything, to refer me, leading to the issues I detailed in my previous post. I also felt that B12 had something to do with it, but GP said I was in the 'normal range' as in 158. I have had the feeling since and now at a different practice had a B12 test. I was 150, and GP said I was low, gave me loading injection, and I now have tablets, which appear to be keeping me ok.I more often have breathlessness now, combination of diaphragm, heart, and hiatus hernia.. Triple whammy as my current lovely GP says.
I'm so sorry you can't get someone to recognise your ferritin problem. Do they have any response when you point it out? I wouldn't have known about ferritin and the connection without my then GP saying I needed to get it higher.
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Iron deficiency anaemia affecting B12?
Iron deficiency anaemia 
Could it not be PA/B12 deficiency?
Iron Deficiency and PA
PA with iron deficiency
