Could I have Pernicious Anaemia?

Hi, this is my first post. I have been feeling tired, fatigued, foggy brain, headaches, itchy skin, burning crawling sensation in palms so I got bloods checked from GP. First bloods done mid March and my serum ferritin was 1 and Haemoglobin was 8.0 I was put on iron supplements. I was given a colonoscopy, endoscopy which showed nothing wrong and clear of coeliac. I returned to GP of my own accord as I hadn't heard from them and asked for bloods to be redone. This time ferritin was 12, haemoglobin was 12.8 and got B12 checked. Results showed B12 at 276 and folate at 4.3 I was concerned and called GP. I was basically told it was highly unlikely that I had P.A. and that I wasn't even B12 deficient as the range started from 200 as acceptable. I asked for an IF test and after much argumentative discussion I am going to get this test done. Basically I have been left feeling like a hypochondriac who is a pest and the GP insisted that all my results were perfectly fine. I stressed that surely something could be done as the symptoms should count for something but was told no, that I was 'only deficient in iron' GP has made me feel like I had no reason to suspect PA or to even consider being checked for it. Anyone had similar issues getting back to some kind of healthy life? Thanks in advance..

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  • Unfortunately most doctors aren't aware as they should be of the limitations of the B12 serum test so don't actually know how to interpret it properly. Your results are certainly in the grey area where people do show significant clinical signs of B12 deficiency but results come back normal.

    If UK based you may find this site provides you with some good hints on how to deal with your doctor

    b12deficiency.info/

    You may also find it useful to quote some of the BCSH guidelines on cobalamin deficiency and the need to treat even if in normal range if there is strong indication of neurological symptoms but no actual anaemia

    bcshguidelines.com/document...

    refer to the summary on page 2

    PA is just one potential absorption problem that can lead to B12 deficiency.

    The IF test isn't particularly accurate so trying to tie down the cause to PA can be quite difficult.

    Other causes of a B12 deficiency are:

    - genetic defects affecting the ileum - though the colonoscopy and endoscopy should have picked that up

    - gastric surgery affecting the ileum - eg gastric band

    - lowering of stomach acid levels as you get older

    - drug interactions: including anti-acid, some painkillers (NSAID), some anti-convulsants (eg Gabapentin), metformin used to treat type 2 diabetes ... just to mention a few.

    It is the B12 deficiency that causes the symptoms of PA.

    Limitations of the B12 serum test include the fact that it looks at all forms of B12 in the system and not just the forms that are used at the cellular level, and the fact that other things can go wrong in the B12 cycle that mean it isn't getting through to cells.

    Your folate is also at the low end of the spectrum and could also be contributing to your iron deficiency.

    Ideal situation would be to try and get definitive diagnosis before any supplementation but that really can be an uphill struggle.

    It may be that you could get your GP to redo the B12 test to see if there is a trend of levels dropping and take that as an indication that you have an absorption problem that needs to be treated.

  • Thank you for your reply. I have had two days of energy and today I have hit the wall so to speak. I am desperate to find a cause for the way I am feeling. It seems UK GP's are not up to speed, I think I may go back in 2-3 months and ask to be retested. I will have a good read of the articles you have mentioned. Thank you x

  • There are also a lot of good books on B12 out therer - thoughh they can also be quite scary because of the extent to which diagnosis is left late but can recommend Sally Pacholok et al: Could it be B12? amd Marthyn Hooper: Pernicious Anaemia - the forgotten disease ... and having a good explore of the following sites

    pernicious-anaemia-society....

    pernicious-anaemia-society....

    Remember what the brain fog was like so just take things in small chunks.

  • Thank you very much for your help. The brain fog is pretty crazy xx

  • Your story is too typical. Some doctors are taught that they have all the authoritative answers in their little computers. They forget to listen to patients. Being treated like a hypochondriac is typical. Next he/she will be prescribing an anti-anxiety drug. So watch out.

    Start a logbook of all your symptoms. Especially the neurological ones. Also log your food and medicines. Although celiac has been ruled out it doesn't mean that there isn't another allergic reaction occurring.

  • Yes I am on episcalopram for anxiety. Been on it after PND with my youngest son who is now four. A log book is a great idea! Thank you x

  • Hi, I've assumed you're in the UK.

    "tired, fatigued, foggy brain, headaches, itchy skin, burning crawling sensation in palms" These symptoms are found in B12 deficiency and/or PA. Have you had thyroid blood tests as the symptoms overlap? It might be helpful to look at the Thyroid site on HU. I think itchy skin can be found in people with iron deficiency.

    Your ferritin results appear to be at the lower end of the range. I would have thought they should be trying to find out why your iron is low. Other blood tests can be more reliable than the IFA test eg MMA, Homocysteine and Active B12. You can get these done privately if the GP won't order them. If you are already supplementing with B12 then the tests results could be unreliable.

    I always get copies of my blood results...I learnt to after being told my results were normal and then finding some were not when I looked closely at results.

    You might find it helpful to take someone who is suppportive and interested and has read about B12 when you go back to your GP. Having a witness can improve behaviour.

    Google "BCSH Cobalamin and Folate guidelines" These were updated in 2014. It's a long document but worth reading. Page 29 is a diagnosis flowchart. I have given this page to my GP. The guidelines makes it clear that it is still possible to have PA even if IFA test is negative. The PAS have a useful summary of this document in the library section of their website.

    Another useful test that is rarely done on the NHS but I think can be done privately is a "blood smear" aka "blood film". This looks for abnormally shaped blood cells.

    I'd strongly recommend you ring the PAS. You don't have to be a member to speak to them. If you leave a message they will get back to you.

    pernicious-anaemia-soci... Head office: 01656 769 717

    Other useful links

    bmj.com/content/349/bmj...

    Has your GP got a copy of the summary points of this article? It makes it clear that symptomatic patients should be treated to prevent neuro damage even if blood results are normal.

    ukneqas-haematinics.org...

    This emphasises the importance of not delaying treatment in symptomatic patients even if test results are normal. Has your GP got a copy of this?

    b12d.org

    b12deficiency.info

    Do you have any neuro symptoms? If yes, is your GP aware of all of them? I emphasise any neuro symptoms when I talk to my GP.

    b12deficiency.info/sign...

    pernicious-anaemia-soci...

    The treatment for patients with PA or B12 deficiency with neuro symptoms is more intensive. Your GP can look in his/her copy of the BNF (British National Formulary) at Chapter 9 Section 1.2. The BNF is copyrighted.

    My understanding is that people with B12 deficiency or PA with neuro symptoms should get an injection every two days until they stop improving ( that could mean loading doses for a period of several weeks even months) then they should get an injection every two months. I also think that patients with B12 d or PA with neuro symptoms are supposed to be referred to a haematologist.

    Low iron (ferritin) makes your red blood cells smaller. Low B12 and/or folate makes your red blood cells bigger. If you have both low ferritin and low B12 and/or folate then your MCV and MCH on your full blood count may appear normal and your GP might miss potential problems. Have you had a recent full blood count? High MCV and high MCH can indicate a macrocytic or megablastic anaemia.

    "Basically I have been left feeling like a hypochondriac who is a pest "

    I empathise with your situation. I was told I was a hypochondriac and that my symptoms were psychosomatic. It sadly happens to too many people with symptoms suggestive of B12 defic. or PA.

  • Thank you for such an informative reply. I have read the BSCH guidelines and it's even more frustrating knowing that with symptoms you should still be treated even if over the minimum range. I'm desperately trying to raise my iron but the gp prescribed ferrous fumarate and when I asked 'is there anything else you can do?' I was told 'just come back in three months' so another three months of symptoms and feeling dreadful. I asked for copies of my blood tests last week. And yes you are correct, they told me in March that my hb level was 8.2 or 82 when in reality it was 8.0 or 80, I should have had an iron infusion at 8.0! I am going this week for the blood test for PA but I think it will just be the IF, I am thinking I should maybe ask about the other tests... Thank you so much again x

  • Sorry forgot to add that I am in the UK. Had a quick look at my blood test results and MCV and MCH were a bit low in March but have now came up to normal levels in July. It is my understanding now that I will not get B12 injections as a treatment until my iron/ferritin rise considerably xx

  • Your levels are low MaryB and you can still have an absorption problem without testing positive for coeliac - in the videos below, Dr Saleem is the only one to mention that it can cause B12 deficiency:

    thinkcoeliac.co.uk/ibs

    Re. tests, here are extracts from the book, "Could it be B12? :

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    Doctors are generally not up to date with the latest research guidelines on diagnosis and treatment for B12 deficiency and you have to be prepared to research and fight your corner or supplement and self treat. We fought to eventually obtain monthly injections for our relative, who was misdiagnosed with ME, etc for years and then dementia. We wrote to the surgery setting out medical history, and followed up with the latest BMJ research, UKNEQAS and BCSH guidelines. Putting your case in writing could help, as I'm told that their biggest fear is being sued. These links might help in writing and collecting information for the treatment you need.

    b12deficiency.info/b12-writ... (and an excellent film)

    cmim.org/pdf2014/funcion.ph...

    The above UK research document is supported by many research papers and is peer reviewed. It also tells your GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.

    Very best wishes for a good outcome.

  • Thank you for your very informative reply. I will be sure to look at all the links you have provided. Isn't it crazy how doctors are so reluctant to treat, so many people suffering without help. It looks like putting everything in writing is the way to go. Looks like I have a fight on my hands to get anything done. Thank you again your information is incredibly helpful xx

  • Sorry I should have added that my levels of iron are still very low it seems to get treatment by injection for B12 even if they agreed to it. I'm really hoping that the iron tablets up my results before I visit GP again in three months xx

  • I can sympathise entirely, I have given up with my gp, I can't bear being made to feel like a hypochondriac or be told if I'm tired all the time maybe I should stop working! ! (Wtf? As if people can just stop working, and I only work 15 hours a week, it is not my job/lifestyle that's making me tired!!)

    I do hope you persevere, and get some answers, good luck.

  • Isn't it crazy! My GP said I was maybe just stressed when I said my hair was falling out and breaking off. And u are spot on, it's not lifestyle that's making us tired, etc. thank you and I hope you get some answers too xx

  • I was diagnosed b12 deficient at 250. It was confirmed I couldn't absorb b12 by testing intrinsic factor. And also had high homocysteine. You can have a normal b12 and still be deficient. Such as testing homocysteine can help to confirm it. Do not take supplements such as folic acid prior to testing as that can affect the results. The GPs know nothing my experience but a good endocrinologist should be more on the case.

    My endo also said that the term PA is old fashioned and isn't really used anymore as our understanding of absorption in the stomach is constantly developing.

    I had no idea I had it and was being tested for other things in relation to infertility. But the endocrinologist I saw tested all this based on my symptoms which were predominantly neuropsychiatric, as well as weight loss and infertility, and some itching under my left foot.

  • That's very interesting to see that you were diagnosed via instrinsic factor. I had bought 5mg folic acid, took one a couple of days ago but stopped as I have my IF test this week at doctors. I hope this doesn't affect the result :( unfortunately my GP surgery seems hopeless and it's a fight to even get a blood test these days. Thank you for your reply and I it's great that you are being looked after well now xx

  • It was being positive in the intrinsic factor test which confirmed that I have an autoimmune condition - what used to be called PA. And it was the high homocysteine that revealed a b12 deficiency. However returning to my gp she's still completely at a loss. And even after being diagnosed by a top endocrinologist she says - but you're not deficient at 250. So I actually haven't been getting enough injections I think. You should be fine haven taken a few tablets. I wouldn't worry at all about that. Good luck!

  • Thank you! What more evidence do the GP's need, you tested positive! Your GP sounds a bit like mine... Hopeless! I am gobsmacked at the lack of understanding from GPs in the UK. I hope you get more injections soon xx

  • Hi Mary

    I totally understand your worries and frustrations I was diagnosed last year and have B12 injections every three months, I do hope you get the answers you are looking for.

  • It's going to be a long hard fight I think, to even get diagnosed. It's all very frustrating. Thank you for your support xx

  • Were the red blood cells large. This convinced my GP and she looks at this now. Good luck in regaining your health. x

  • My results in March were MCV 65.8 and MCH 18.9

    Then in July they were up to normal at 84.6 MVC and 27.4 MCH so it seems they were not large, maybe this will go against me I don't know :( ... Thanks for your support x

  • I had a similar problem with low ferritin which I've had difficulty raising - symptoms extreme fatigue, brain fog, bloating and burping, sighing. I had a test for antiparietal cell antibodies which came back positive so my GP allowed me to have B12 injections (B12 level over 350) but I don't think they've really made much difference - I still think it is the low ferritin which is the problem and three years later I'm still taking iron supplements. Just wanted to warn you that B12 may not be the fix you're looking for.

  • Hi Laura, sorry to hear that you are still feeling poorly after years of treatment. I think I'm just desperate for an answer and willing to look at/try anything. Have they found a cause for your low iron and ferritin? My GP told me three months ago that my iron would shoot up after supplements as I was so anaemic but I have been really disappointed in my current blood results. The doc says I'm improving but I don't feel a bit of difference, that's why I thought maybe the b12 was a contributing factor? Three years on ferrous fumerate makes me feel nauceaous! They are horrible to take. I take my hat off to u for taking them such a long time. I was told I would maybe be on them for 3-6 months..... I'm thinking different now. Did you come off the iron and your level dropped or did your level just not raise at all? Surely this would point to some kind of malabsorption problem? Thank you for your informative and interesting reply xx

  • We were writing at the same time - some of my explanation is below. My ferritin was at 5 when my anaemia was diagnosed - after a year it got up to 13 which made me think it much be an absorption problem - the doctors were completely unconcerned because I was no longer anaemic. I recommend trying different types of iron if you're finding them difficult to take. I find ferrous gluconate easy to take - it is supposedly less irritating but that might mean it is also harder to absorb. There's also ferrous sulphate. You can buy them all over the counter - you don't need a prescription. I don't take iron tablets all the time now as I think they irritate my stomach - probably one month taking them and then two without. I also take spatone - which has much less iron in it but it is in a liquid form already so it may be absorbed more easily? I haven't got my most recent blood results - I need to ask for them again as I was just given a print out that said 'satisfactory - no action' which didn't really help me know what my ferritin level is now!

  • I have never heard of Spatone but it sounds good. Anything that is a bit easier on the stomach is worth a try. I totally get where u r coming from, as soon as your iron or ferritin comes up to the start of acceptable range u r forgotten about. Xx

  • Just out of interest - when you had your endoscopy did they take biopsies from the corpus of your stomach? I was told by the endo that my endoscopy didn't explain my symptoms and I probably had IBS brought on by anxiety. I asked for copies of the pathology report on the biopsies and it said that I had evidence of chronic gastritis - no mention of this by the consultant. Autoimmune gastritis is caused by the antiparietal cell antibodies and leads to low stomach acid which leads to difficulty in absorbing iron. I'd say that explains everything.

  • Wow, I would say that was pretty conclusive evidence. Did you have to get pathology report from hospital or should doctor hold this on computer? (Sorry for all the questions!) when I had my colonoscopy and endoscopy the consultant said he had taken a biopsy to check for coeliac disease that was it! I waited 10 weeks on result and the doc said ' no further gastro investigation needed, everything was fine' and it was left at that :( xx

  • I got the pathology report from the hospital - I sent them an email and they gave me the number for the consultant's secretary who sent it to me. Some hospitals may charge for this. However, if you only had a biopsy to check for coeliac disease, that wont help as that biopsy is taken from the duodenum and you need a biopsy from the corpus or fundus of the stomach to test for autoimmune gastritis.

  • Yes I definitely only got a biopsy for Coeliac. I think I will try to get a copy of my report but it might not be worth it as it will only show Coeliac. How do you feel these days Laura? Will this be a lifelong problem for you? Xxx

  • I'm definitely feeling better than when I was diagnosed - but not as good as I hoped. I'm in my 40s so I'm hoping that the iron might get back to normal once I reach the menopause. The main worry is that I think autoimmune gastritis can develop into pernicious anaemia and other absorption problems, not just iron, might be involved so I'd like to find a doctor I can have a sensible conversation with about it without being treated like a hypochondriac - haven't got there yet.

  • If you are getting your intrinsic factor antibodies tested, it might be worth getting antiparietal cell antibodies tested at the same time - if they'll do it. The intrinsic factor antibody test isn't very sensitive.

  • Thanks for the tip Laura, getting the IF test later this week, knowing my GP they will do intrinsic factor test and nothing else. I will definitely ask though. Is that the MMA test? I'm in my forties too and I'm rattling and crunching around like an old lady at the moment. I hope you find a decent doc who will listen xxx

  • It isn't the MMA test. There are two different antibodies which are involved with pernicious anaemia - one is the intrinsic factor antibody which attacks the cells which produce intrinsic factor which is needed to absorb B12 and the other is the antibody to parietal cells which produce stomach acid. The problem with the intrinsic factor antibody test is that it is only positive in about 60% of cases of pernicious anaemia. There is more information here:

    labtestsonline.org/understa...

    This paper is quite interesting as it looks at presentations of autoimmune gastritis at different ages - it found that in their 40s women present with iron deficiency but go on to present with B12 deficiency later on:

    bloodjournal.org/content/10...

  • Thank you Laura, it seems I am only getting the IFA test but hey ho. Thank you also for the articles I am going to have a read at them now. Xx

  • Hi. I had blood tests done a few months ago, my b12 was 192, my gp said it was grand. My symptoms are achy sore legs and arms, fatigue, and it's feels like all my muscles are always tensed. I also have stomach problems, and bouts of diahorrea. I'm being treated for anxiety and depression, which I've had in th past. But I'm beginning to wonder if it's really all to do with my b12 level.

  • Your symptoms sound very similar to mine...I don't have any stomach problems tho.. Your b12 is very low and I would think this is definitely partly to do with b12 deficiency, maybe time to go back and get retested xx

  • Are u in the UK. If so, I think they class anything <200 as deficiency and should treat asap...however the ranges seem to be very messed up and change from one health service to another :(

  • I'm in Ireland, they told me that once it goes below 190 they class it's as low then. Defo gonna go back and see what the doctor has to say,it's horrible feeling this bad all the time! I even have the vertical and horizontal lines on my nails which happens when u have a b12 deficiency, I'm a nail technician so I notice every little change on them. Lol. Is there any good b12 drinks or supplements?? X

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