Could one of the administrators on this site please tell me if macrocytic anaemia is the same as Pernicious Anaemia. Thank you.
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B12 defficiency
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Meerkat1234
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Different things. Macrocytic anemia may be caused by the B12 deficiency caused by Pernicious Anaemia, but Macrocytic Anemia can have other causes too, outlined here:
medicalnewstoday.com/articl...
Pernicious Anaemia, although the accepted name for the condition, is actually a misnomer as PA may occur without any anaemia. PA refers to the auto-immune condition which destroys intrinsic factor, the body's normal B12 absorption mechanism, resulting in a B12 deficiency.
I'm sure FlipperTD will give a better answer but in case you wanted the short story.
Thank you for all the information.
Scientist, not medic.
Here we go... [Trying to keep it simple and missing out a lot of the science]
Macrocytic anaemia is a symptom of something else. Red cells are produced in the bone marrow, and if there's a lack of B12, or folate, then the cells tend to be bigger because there's an issue with DNA synthesis. Cells mature driven by cytoplasm maturity. Cells divide driven by DNA synthesis. To get to a point where they divide, the cell needs to get to '2n' chromosomes, and then you get two 'daughter cells' with 1n chromosomes. If the cytoplasm matures somewhere between 1n and 2n chromosomes, then the cell matures and you don't get the final mitosis. Consequently the cells are bigger. If there's any issue with either B12 or folate,then this is likely to happen. You will also find that in hypothyroidism, there can be a mild macrocytosis, and in excess alcohol consumption the same thing can be found. Drugs known as folate antagonists will also cause macrocytosis.
Pernicious Anaemia, or Addisonian Pernicious Anaemia, is a horrible condition with a universally dreadful outcome, typically leading to death within 2 or 3 years IF UNTREATED. However it's been possible to treat PA very effectively for a very long time now, but previously it was more or less universally fatal. It's an unfortunate term, but it's widely used.
PA follows the loss of Intrinsic Factor [IF] production by the stomach. IF is needed to bind B12 from food, and facilitate it's absorption via the terminal ileum. If you have no stomach, or no ileum, then you will have no IF, so you'll end up B12 deficient and will probably develop a macrocytic anaemia. If however you're also Iron deficient, then the macrocytosis might not be as marked, as Iron deficiency is marked with a microcytic anaemia.
If you have an autoimmune condition whereby you produce an antibody-like response to IF, then they're likely to impair the IF-mediated B12 absorption via the ileum. IF is produced by gastric parietal cells, and sometimes, parietal cell antibodies are found also, but that's not a specific finding for PA.
So, simply, Macrocytic Anaemia is an anaemia secondary to megaloblastic change in the bone marrow, and that's typically secondary to lack of either B12, or folate, or both. But there are other things that can be involved.
PA is an auto-immune condition which often results in Macrocytic Anaemia.
I hope this isn't too confusing!
Thank you for that detailed reply. I have hypothyroidism and my doctor discovered large red platelets in my blood. He spoke to the haematologist who said it was because I am not eating B12. I have not been able to digest protein for ten years. The reading was supposed to be 100 and mine was 110. They said they were not worried and they are telephoning me on the 17th of July. The doctor stopped B12 injections in February 2020. In March 2020 I got numbness in my hands and feet and when I walk I go off balance. I am very under medicated for hypothyroidism as doctor didn’t put it up and I am still on starter dose. I am gluten, dairy and soy free and have a diet of just rice potatoes vegan margarine vegan cheese and vegan yogurt. I cannot digest protein. I have very weak muscles and have had to sleep downstairs. I have Autism and ADHD and this creates crippling anxiety all the time. I have been tested for cortisol which was normal and my heart was tested which was normal. The doctors keep asking me if I drink a lot and I am teetotal. I have been on psychiatric drugs since the nineties. I had a test then which found my bones in my spine and hips were only half the calcium they should have been. A neurologist also found that my reflexes were not responding. I have other blood tests that are abnormal but it was the large platelets that the doctor was concerned about. I asked my doctor for Vitamin B12 injections. He said my B12 is normal at 202 ng Normal Range 145 - 914.
My Vitamin D was 31nmol/L which I have tried to take but gives me horrible side effects.
My ferritin is 117.8 ug/L Normal RNge 11.00 - 307.0
My Folate is 4.28 ug/L Normal Range 3.00 - 20.0
Iron is 23.6 umol/L Normal Range 11.0 - 32.0
I saw a dietitian about my eating and she has referred me to Mental Health for disordered eating. It all started in 2011 with two severe bouts of Norrovirus. Then she thinks may have developed a fear of food which can happen in neurodivergent people. I am going for a B12 injection reluctantly agreed to given by doctor then he wants a blood test done. What do I do about getting more. I cannot take supplements of B12. Could you please advise me. Many Thanks and Kind Regards.
Hi Meerkat.
One of us is confused here, and I think it's you. Large red platelets? Nope. Large red cells, certainly, but platelets aren't ever red. Large platelets are another matter.
In my opinion, a dietitian would be very helpful, because what you describe as your normal eating pattern is likely to cause lots of issues.
Good luck. I hope you can get yourself sorted, and get help.
Best wishes.
These are my results.
Red Blood Cell Distribution width 14.4% Normal Range 8.0 - 16.0
Platelet Count 134 10*9/L Normal Range 150 - 410
"I have not been able to digest protein for ten years."
Sorry to be a stickler here but that is not possible. I understand because of your gut issues you are avoiding high-protein foods but the foods you have been eating do contain (some) protein. You would get a severe protein deficiency (kwashiorkor) and die if you were not eating, or unable to absorb, ANY protein. You would never make it to 10 years without protein , that's not physically possible. I second the recommendation to work with a good Gastro+Registered Dietician as no amount of injections or supplements will save you from a diet that consists of 5 mostly not very healthy, foods. Arranging a good supplement regime on this diet is like re-arranging the deckchairs on the Titanic - the ship will still go down.
I understand that. Thank you for your reply. I appreciate it.
went to doctors. Injection couldn’t be done as no doctor there so come back tomorrow so I had a meltdown. SlowDragon administrator on thyroid told me last night not to have a B12 injection before having a test for pernicious anamia and I don’t know why as I don’t understand this stuff. Can you please explain. Me and my husband are elderly and the treatment from these doctors has been appalling. What do I do now.
A B12 injection before IFAB test may result in a false positive. The usual advice is to be about 2 weeks clear of any B12 injection before you get an IFAB test. Otherwise any positive result may be thrown out as "invalid".
You have said that test but SlowDragon has said pernicious anaemia. I do not understand.
The most common test for pernicious anaemia is the Anti-intrinsic Factor Antibody Test. I abbreviated it as IFAB.
"This is the test used to find out if the patient has ‘classic’ or ‘full-blown’ Pernicious Anaemia. The test is classified as highly specific (>95%): if tested positive the patient will be deemed as having auto-immune Pernicious Anaemia. However the test has a low sensitivity (50-70%) which means that a negative result does not rule out Pernicious Anaemia."
pernicious-anaemia-society....
Thank you for your explanation. What type of physician does that testing.
Any general practitioner should be able to order it if they suspect PA.
Thank you for your reply. Is it a blood test.
Hi Meerkat, I hope this helps:
In a normal person, intrinsic factor (IF) is a substance made by your stomach, and it allows your body to absorb B12 from food, tablets, and so on. It transports B12 from your intestine to your bloodstream. B12 is a large molecule so it requires these "transporters" to go from one place to another within the body.
In people with the disease called "pernicious anemia", the body makes antibodies against IF. The test Technoid refers to detects these antibodies : Anti-intrinsic Factor Antibody Test, abbreviated IFAB. This is often called the "pernicious anemia test" because these antibodies occur only in pernicious anemia.
There are other tests for low B12, such serum B12, active B12, homocysteine, and MMA. But these are not specific to pernicious anemia, because there are many other causes of low B12. But that doesn't matter, in someone with suspected B12 deficiency / B12 malabsorption / pernicious anemia, these test are also useful.
*However* these tests may be falsely distorted if you get an injection before you get a blood test. That is, the tests may say "no you don't have B12 deficiency" when in fact you do. That's why people recommend getting testing first, and then getting injections.
Meerkat1234 i was just reading your other post healthunlocked.com/pasoc/po...
And noticed that you have already been on injections.
Do you have any of your old results? Did you ever have intrinsic factor tested or do they know the cause of your deficiency?
Honestly if i were in your shoes, i might think about self injection (SI), as many of us do. Let us know if you want help with that.
Hello jade -s.Thank you for that detailed explanation. I have only in the last few days heard of this stuff. I don’t know why my B12 was so low only my poor diet. I don’t have that on the computer because it was before we had the results. My husband said he would inject me as I don’t think I could do it myself. I am disgusted the doctor won’t do it. Have you got any advice on it.Do you self inject. Thanks for your reply.
Yes I've been self-injecting for many years now. 
I'm sorry your doctors have failed you.
I've sent you a private message, you can find it under "Chat" in the menu.
CherylclaireForum Support
There is a lot going on with you and untangling it all must be difficult. I don't think that there is anyone here that is medically qualified or able, much as we'd want to, to help you with that.
What I do recognise is this. There is a link between B12 deficiency and autism. Probably also then with ADHD. My family medical history has a lot of all of this, plus autoimmune thyroid conditions, vitiligo, psoriasis. Anxiety can be linked to B12 deficiency - many people here have talked about that being a problem - as well as with ADHD and autism.
My sister told me that being neurodiverse can also affect indication of when hungry or full, meaning that it can cause you to forget to eat or to not stop eating. There is also a tendency to stick to the same familiar food, a diet which might seem bland to others. Or beige. Or unhealthy. If you added to that a couple of severe bouts of Norovirus, it would not be at all surprising that you are struggling with your diet.
This is affecting your health though and I really hope that an eating specialist will be able to help you to improve your vitamin levels. Your doctor is not aproaching B12 treatment in the right way though. It is likely that 202ng/L is too low for you even if not outside of the local test range. Mine was 196 ng/L back in 2016: I was given B12 injections because 197 ng/l was the local range bottom cut-off point. I still need B12 injections frequently even now.
My GP restarted my B12 loading injections because she found that I had functional B12 deficiency. I wasn't able to utilise the B12 easily as far as cell/tissue level, so needed frequent injections. This was detected by raised MMA blood test results. My folate, ferritin and vitamin D were also affected. She monitored these, but not my B12 level: as she said, "pointless" - we both already knew it would be high, which was exactly what I needed.
So, while your GP might think that a reluctant injection and then measuring the amount in your blood is the whole picture, I would disagree. So would my GP. So would all the medical guidelines that doctors follow. Measuring B12 serum levels after injections have started is NOT advised, because it does not tell the GP anything. Pointless.
A trial of one injection is also pointless. If this is not your problem, nothing will change. If it has been a long-term problem, one won't change anything either. Macrocytic anaemia due to pernicious anaemia has not yet been ruled and it would be extremely unwise to rule it out based on a serum B12 level of 202ng/L.
Is it likely that your GP believes your poor diet is solely to blame for the low B12 ?
Even so, one would expect at the very least a loading dose of 6 injections and monitoring by observation and patient response. I would have thought s/he would have requested this prior to sending you to a dietitian, and eating disorder specialist. They are right to be more concerned about macrocytic anaemia before addressing other deficiencies (folate,ferritin, vitamin D) though.
Take up any referrals in the hope that you can get a specialist to request/organise a proper B12 trial for you. Always take someone with you to appointments if you can. All of this can cause more unnecessary anxiety and stress. I remember being unable to go alone as I could never find the research notes that I had so carefully highlighted, never remember what I wanted to say, and forgot entirely what they had told me. I needed help just trying to book my six loading doses with the receptionist, with my diary open in front of me.
It can get a whole lot better than this.
Thank you for detailed reply. I don’t know what is going on with my health. I understand it is all too much for you to sort out. Kind Regards.
Would if I could, Meerkat.
The eating disorder specialist should be able to help you to get a proper trial of B12 treatment from your doctor.
A cause for low B12 may be pernicious anaemia (PA) - it could be possible to get an IFab test as suggested by others, but be aware that around 50% of even those with PA will test "negative" for IFab (intrinsic factor antibodies) and so the test may need repeating. A "positive" IFab result is as good a diagnosis as you will get. If you do get a "positive", please make sure you ask for a copy or printout of this result, as some people here have found that an earlier result has been disputed if they have changed surgeries etc.
Although your diet is likely to be the cause for your low B12, this does not rule out pernicious anaemia. Your platelet count and red blood cell results should be discussed with you by this specialist too, if a cause for concern.
I wish you well.
Hello Cherylclaire. The dietitian said the same as my doctor that you can have too much B12. I have got a haematologist ringing me on 17th July but they have just told doctor it is where I am not eating so I don’t think they will tell the doctor to give me B12 either. I don’t know what to do. Nobody in the medical community are helping me. I am at the end of my tether and so is my husband. I am scared that after three and a half years of being virtually bedbound and not knowing anything about B12 defficiency I will have to spend the rest of my life in a wheelchair which my husband is too old at 71 to push. I am very depressed and feel seriously unwell and like I am going to die. I have very dark thoughts too.Sorry to be so miserable but I feel hopeless and desperate. Thank you for your kind reply.
Please do not give up - if you can, contact the Pernicious Anaemia Society, they might well be able to help you.
Even if the reason is dietary alone, you really do need some help in recovering -and then being able to get back to a healthier way to live. Your B12 is low, your vitamin d too and no doubt other vitamins are needed.
I found that, for me, "too much" B12 was my only way to recovery. My GP was quite happy with the improvements I was getting from the two injections a week that she requested - although the nurses were worried, she could see the benefits and continued the frequency.
Unexpectedly high B12 readings can be a sign that there is a possibly serious medical cause - but if the cause is simply B12 injections given to enable survival, there is no risk.
Hello Cherlylclaire. What can the serious things be if the B12 reading is too high because that what mine did in February 2020. I have one injection with the doctor then he wants a blood test. I have booked a loading dose and more with an osteopath but I don’t know if I should have done that. What do you think.
The doctor is probably looking to see how long your B12 lasts in your bloodstream - by giving you one injection, checking your level then and again checking your test result in a month or so. Which can tell him whether it has cleared from your bloodstream, but not where it went. What I mean is whether or not it actually was useful to you at cell/tissue level or what percentage of the B12 is active (useful).
My own B12, when it was measured in 2016, was over 2000 ng/L after just having an injection, and two months later was 860 ng/L - which was still above the top of the range (197 - 771 ng/L). Because I have frequent B12 injections, I would imagine that my B12 would always be above the measurable limit if tested. This is what I need to keep from getting worse, but this is not true for everyone. We are all different.
A high B12 test result would be of concern to a doctor if there was no obvious reason: no injections given, no supplements taken, not eating liver every day - so a GP would want to know about diet and whether you had had injections (NHS or privately) or tablets containing B12. If not, they would probably be looking at liver function first, since extra B12 would usually be stored there in a healthy person.
But i thought you were told your B12 was low ?
Hi Cherylclaire. In January my B12 was 202 Normal Range 145 - 914 so it was low then and will be lower now. Dr tests every six months. I do have a liver enzyme not working properly but this is all medical stuff like you said you can’t help with. Thanks for replying. Take Care .
Yes that is low enough to be causing you problems. Mine was 196 ng/L when first found to be deficient.
If you have other health problems (liver/ kidney), your GP should also be looking into this.
Your dietary problems will probably take a while to help you sort out, but a shame he is unwilling to give you a trial of B12 of sufficient length with a proper chance of monitoring the impact this has for you.
Take care too. Let us know how you get on. Don't give up looking for answers.
Thank you for your reply. You are very caring and I appreciate it very much. Our B12 reading was similar. Do you have any neurological problems. Do you have thyroid problems. I might have repeated myself. Sorry if I have.
No worries.
Neurological problems - well I was quite lucky in that I didn't get to the stage where I couldn't walk, but I was struggling when tired to put one leg in front of the other and everything was taking considerably longer than before. I did trip up a few times because of foot-drop, but not much else physically. Some dizziness but no severe balance issues. Cognitive issues were (and still can be) a bigger problem. This was the main reason that I could not do my job. Memory was also appallingly bad but improving. Even yesterday, as I had to use my brain (such as it is !) to read through some documents and make notes, I noticed that my words were "going" (unable to remember the names for simple items). Some things just seem to use up more of your B12 !
Thyroid problems - again, I think I was lucky. I got a test done because two of my sisters have Grave's disease (autoimmune thyroid condition) and although thyroid struggled a bit, I was okay. Think I was heading that way. Marz was very helpful with picking up on that from my results.
It has taken years to get gradual improvements. Plus a lot of B12.
Make a list of all of your symptoms - I divided mine into two pages: physical symptoms and mental symptoms. I named each problem and gave a very brief description of how it affected me. A haematologist asked for a copy when I showed it to her, so assume it is on my medical record. I am happy to let people in the medical profession know the real consequences of this condition - if I think they will be used to help us. But even if you do not choose to show this to anyone, it will help you to pick up on any small changes for the better. With proper treatment, these will come.
Hi Cherylclaire. I had foot drop too. I am pleased that you haven’t got thyroid problems. I am also pleased that you didn’t get balance problems. I am having an injection tomorrow from the doctor and then the next day I am getting a holding dose from an osteopath. I hope I am doing the right thing. I definitely have nearly all the B12 deficiency symptoms on the osteopaths list. My doctors know nothing about this nor did they know about my thyroid. I knew nothing about B12 deficiency symptoms until I came on this site. I have also found out over the weekend that the medication Lyrica which the doctor gave me for numbness causes neuropathy. Also I was on an antidepressant for years which can also cause neuropathy. I feel so fed up with it all. These drugs can also cause Hypothyroidism. Thanks for replying and I will let you know how I get on. I have got a Haematologist phoning me in July to discuss the problems in my blood. Take care of yourself. Thanks for your help.
If you can get regular B12 injections, you might find that some of the problems you have been living with and were attributed to something else improve. I'm thinking hopefully about the depression in particular - many people here see that as a B12 deficiency symptom, and can now manage it well.
Yes hopefully my depression will improve. That would be really good. Thank you for replying.
"I have also found out over the weekend that the medication Lyrica which the doctor gave me for numbness causes neuropathy. "
Where did you read this Meerkat1234 ? Its also known as pregabalin and comes up now and then on this forum . I haven't seen any references to it that suggest it could cause neuropathy. Indeed, quite the inverse, it seems to be prescribed for neuropathic pain (among other things).
Re depression, this course might be worth a look:
m.youtube.com/playlist?list...
Morning Technoid. I must have got that wrong. I have read my leaflet and it doesn’t say it causes neuropathy. I was given it in March 2020 for numbness in feet and hands. Thank you for the link.
no worries
Hello Meerkat1234,I've just come across your post and it sounds like youve been having an awful time.
How are you doing now?
Any new things good or bad since you last posted?
🌸
Hello Sneedle. I am dealing with an eating disorder called ARFID and have to see a psychiatrist. Information on forum today had a case study which said it can be caused by low T3 and mine is nearly out of range. I am very depressed with it all and it is all so difficult. It is kind of you to care. Appreciate it.
That sounds really, really tough. Can your psychiatrist help at all with figuring out your blood results and a way forward? As your psychological and physical health are intimately connected.
I wish I could help but feel that in your complex situation, a nutritionist experienced in eating disorder recovery might be a safe pair of hands. Can you ask your psychiatrist about finding someone? When you saw the dietitian who referred you to Mental Health support, did they talk about your blood results eg B12, Vit D and how to raise these in a way you can tolerate? I realise I'm not sure here of the difference between a dietitian and a nutritionist.
You have your Thyroid issues, your Vit and Mineral (B12 etc.) issues, your dietary issues (from restricted intake), possible liver issues, all of which are resulting in your horrible symptoms.
You wrote a very good paragraph above detailing your symptoms - can you take this or a similar version of it with physical and mental symptoms as suggested by Cherylclaire to your psychiatrist and say 'Who can help me with all this?'. Sounds daft, but often doctors and specialists do not join up the dots. And the patient has to get really basic and put it on paper.
It's very clear that you do have neurological symptoms. Can you ask your GP why you aren't being treated immediately for them? My daughter recently had low B12 on a test and has symptoms and although we don't know right now what is causing it, the GP has given her an IFAB test to check if it's Pernicious Anaemia (if possible as the test is not always clear) and on her notes has written that it is worth trying loading doses of B12 injections to see if that helps.
When you mention the osteopath giving you a B12 shot, do you mean a loading dose? I've not heard of a holding dose. Was it only one dose or a series?
This should happen for you regardless of the cause - whether diet or any other issue. As you can't benefit from psychiatric or any other help if you're too unwell to leave the house! First you need physical stability, and look at the reasons for your eating once you feel a bit better.
How do you feel now after your B12 injections?
Do you know what your five abnormal blood results are?
Also you have the right to ask for all your blood test results which you could post here.
I am sure this is a lot for you to take in, I'm new over the last few weeks myself and it's a steep learning curve. I'm sorry if this is all a splat of information, I'm no expert, not medically trained and am just coming up with thoughts.
Keeep coming back and asking questions. Slowly but surely you can figure out enough to improve from where you are now.
🌸
Sorry Sneedle. I meant loading dose. I get my sixth one on Tuesday. Then the osteopath says have one every six weeks and the doctor will give me one every six weeks. I have been reading that the T3 can go low with an eating disorder and I had my first eating disorder as a teenager. I think I need a IFAB test like your daughter. Is that a blood test. I do feel stronger after the B12 injections. They should have never been stopped with me not eating. It is a good idea to write it all down although they don’t like it. The trouble with doctors is like you say the mental and physical are linked but the doctors don’t seem to understand that. I put my blood tests on here and SlowDragon sent me a link about a thing called macrocytic anaemia because the doctor found that mt blood platelets are too large. The haematologists have told the GP that they think it is because I am not eating. They are ringing me about it soon. Thank you for your kind reply. I really appreciate you caring.🙂
I have just seen you asked about B12 deficiency. Doctor gave me one then said only every three months. I am just finishing a holding dose with an osteopath who said have one every six weeks. I have neuropathy which the osteopath said might not go completely as I was left for three and a half years without the injections. The doctor stopped them after finding my B12 was so low and then it went too high and he didn’t know why. I didn’t know how dangerous it was to have low B12 nor any of its symptoms. I can’t walk as I am so weak and can’t feel my feet properly. It is all scary. I also have five abnormal blood test results and have haematology ringing soon. If I was a horse I definitely would have been shot😂
Hi Meerkat, when looking something up for sneedle i found back the follow paper that may be of interest to you. It describes a lady with anorexia & b12 deficiency who had trouble walking. They treated her with "daily 1000 µg intramuscular injections of B12 for two months" !! Might want to show your doctors this.
ncbi.nlm.nih.gov/pmc/articl... 'Sensory Neuronopathy Revealing Severe Vitamin B12 Deficiency in a Patient with Anorexia Nervosa: An Often-Forgotten Reversible Cause"
All else fails and you want to SI according to the guidelines (every other day injections) like many of us do, just let us know and we will help.
Hello jade-s. Thank you for sending this information and link to me. I T is really kind of you. Thank you for offering to help me with SI. I appreciate your help. Take Care.
You're very welcome!
I forgot to add earlier, i too would have been shot long time ago if i was horse 😂
Thanks jade-s. Either shot or put out to grass 😂
😂🤣 i would be ok with the latter 😊
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