Advice re pernicious anemia please. Xxx

Hello all. I only discovered this forum a couple of days ago so please bare with me as all of this information is brand new to me . I have been feeling absolutely exhausted and my energy has crashed the last few days so please excuse me if I'm rambling as my cognitive function is certainly not up to par.

I have a long history of severe gynaecological issues which include prolonged extremely heavy bleeding ,cysts , fibroids and anemia. I have had four laporoscopies were significant amounts of endometriosis were removed by lazer. The 4th op was last Aug . I was then re admitted to hosp with severe unexplained bleeding . Since the op I've had 2 heavy periods a month . I've just now had 3 periods in a row !

Also a long history of frequentUTI' , many severe kidney infections sone very bad pyelonephritis were I was on a drip in hosp for average 3 days to a week. No kidney disease has been found although some scarring has showed .

I have spent years being passed from gynea to urology to surgeons. ! With no real solution being found :/ .

Last year I had my gynea op postponed twice and knee surgery once as my iron levels had dropped too low. Oral iron was not working and I even ate red meat in desperation ( I'm a life long veggie )

Finally the knee surgeon referred me into haematology in the Mac Millian part of the UCH. They have been giving me iron infusions every 3 months since Nov . My level did come up just enough to operate . I thought I would have felt better by now by the infusions actually make me very nauseous and I'm laid low after them .I had one last Tues and felt very very unwell by Thurs . I asked re B12 and they said my level was 250 which they consider normal . Their range is 180 - 600. I felt upset when they refused my B12 which Ironically lead me to research to then come across pernicious anemia. My intuition screamed this waa the link to all my illnesses which also inc long term depression , anxiety , panicked attacks , heart palpations , poor eyesight . The neurological symptoms also match to a tee !! I had thought my falls , balance issues were due to my knee issues , broken toes , torn ligaments etc !! The last 5 years I've been very fatigued but had put this down to depression . I have complex PTSD and have been receiving truama counselling. My recent symptoms are extreme fatigue after small excersion ! Low concentration , cramps , pins and needles , buzzing in right ankle !? , upon standing a fling I am going to fa to the left , gait issues , muscle cramps , migraines that can last 3 days ! Light sensivity , odd rash on neck. Hair loss , candida despite a super healthy gluten free diet ! 2 stone weight gain in a year , loss of appetite. I could go on !!

I feel I have been mis diagnosed as just anemic but after reading the symptoms I now feel and think it's pernicious .

I have a Dr's app on Tues but my normal lovely Dr is away til September !! I really need advice on what I should ask the new Dr , evidence to bring .?

Should I avoid taking an B vitamins now ? Even though I'm on the floor and walking is a big effort and I feel very spaced out .

Any advice on how to proceed from this point would be much appreciated . Many thanks ☆♡☆

18 Replies

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  • Hi, you have been through the mill!

    Im not sure if im right(someone will no doubt correct me if not) but having PA is not always to do with anemia, it is a misnamed condition.

    all i could suggest is you more or less rewrite this as a list with a time frame if possible and if you can remember how your symptoms have got progressively worse.

    What was in the infusions do you know?

    Have you been tested for coeliac or chrones?

    Your level is as they say, is within range but you have no doubt nosed around on the site here and have more than likely noticed that many people are in range(grey area) but are symptomatic.

    Drs differ greatly in how they want/ need to treat so i think it might be a case of just going and stating all of your above, and questioning gp as to wether they think there could be a connection. Would gp be prepared to give a trial of doses to see if there is any improvement is probably the most constructive suggestion i can give you to ask.

    If you have been gluten free and no improvements then that helps but if you have taken your own b12 then that might not because gp could call another blood review.

    Think it is a suck it and see thing, especially as it is going to be a gp who is unfamiliar with you and vice versa.

  • Thankyou for your reply Lisahelen.

    Your advice makes perfect sense.

    I will have to get my medical records to pin point dates etc. I included the gynea and kidney issues in case it crossed referenced as all this information is very new to me . I am currently trying to find evidence to present to the GP on Tues and a new Urology team on Sat.

    I am concerned as myenergy levels , co ordination , concentration are very bad at the moment. Can only hope the Dr's listen now ! Xx

  • Ask for a methylmalonic acid (MMA) blood test. B12 is involved in a reaction that consumes MMA, so insufficient amounts of B12 in the cell results in raised levels of MMA.

  • Thanks for your reply Sayitus . I really hope that is not the case and they do this test for me !! From what I've read on this forum it seems difficult to get results from the NHS . I'm not really in a position to pay privately but am certainly considering buying Methylcolbalmin if needed after I'm diagnosed properly.

    Hope you feel better soon.

    Many thanks xx

  • Thankyou Fbirder. Should I also ask for a ME A urine test and a homocysten test ? Excuse my ignorance if these are the same thing !?

    I really can't see the wood for the tree's at the moment ! I want to get a proper diagnosis as I'm tired of the merry go round !! So far the information on PA seems to tick all my symptom boxes and may also explain the gynea and kidney issues too .

    I notice that many of you are self medicating with Methylcolbalmin . For further reference is there a different medical name ? as I can't find so far on the net . Though I am a complete technophobe ! :) If I am offered hydroxocobalamin from the NHS should I take it or bypass and buy the Methylcolbalmin privately ?

    Though cost may be an issue as I'm not working .

    I can see your very busy on this forum . So thanks for replying . Xx

  • Excuse typos !! I meant an MMA urine test .

  • I though as much. The urine test offers little advantage over the blood test and would have to be done privately.

  • Not sure what an ME A urine test is. If you mean a MMA urine test - that's not available on the NHS.

    Homocysteine probably isn't worth asking for as it's much more likely to be refused (it's quite a fussy test - needs to be done withing 2 hours of the sample being taken). It would almost certainly give a similar result to the MMA test.

    I've had two MMA tests on the NHS, so they will do them if you nag enough.

    In the UK you can really only get methylcobalamin as skin patches or sublingual sprays or lozenges. They are easily available from Amazon.

    The NHS will only offer you hydroxocobalamin for injection. Which is fine, it is the natural form of B12 that is found in food and the vast majority of the population can easily convert it into the active forms.

    There's only one real test for PA itself - a blood test for anti-IF (Intrinsic Factor) antibodies. B12 is too big to cross the intestinal wall so it needs some help. IF is a protein that attaches itself to B12 in the stomach and stays attached until it reaches the end of the small intestine. There, special cells grab hold of the IF and take it into the body, dragging the B12 along with it.

    In PA the immune system attacks IF and/or the cells in the stomach that make it. That means there's no IF to escort the B12 into the body - so it all passes straight through.

    If the blood test finds the antibodies then it's almost certain that you have PA. Unfortunately, 50% of people with PA test negative - which is a major annoyance.

    The very best test for B12 deficiency is to have a course of B12 injections (3 a week for 2 or 3 weeks, then one every 2 or 3 months). If that makes you feel better after a year then you had a B12 deficiency and you should carry on having jabs forever.

  • Very informative !

    Thank you again . Xx

  • I'm so sorry you've had such a difficult time and, it would seem that a lot of your symptoms could be down to B12 deficiency, which can take years to manifest, be misdiagnosed and wreak havoc with your body.

    Very few GPs understand the symptoms of PA/ B12 def. nd rely solely on blood tests that to them appear normal but are unreliable and could be masked by high folate, which as a lifelong vegetarian is possibly the case with you. As you probably already know, devastating neurological symptoms can appear and these should be treated aggressively without delay.

    You could pursue a course of asking for MMA and IF tests but this could take a while and, in the meantime, personally, I would start to self inject and supplement.

    Here are some helpful sites you may not have seen:

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    There is also an excellent film on the above site, in which Dr Jeffrey Stuart mentions how B12 can cause various gynaecological problems.

    ukneqas-haematinics.org.uk/... :

    chriskresser.com/what-every...

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

    The above latest BMJ research document is supported by many research papers and is peer reviewed.:

    "Summary points

    Vitamin B12 deficiency is a common but serious condition

    Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment

    There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance

    There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency

    ***If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features "

    It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective treatment is - it is the clinical condition of the patient that matters....

  • Thank you for replying Polaris . Those are excellent links and advice ! I was trying to formulate a letter to my GP and Hosp team and the template in the link is very helpful . I will research into all the links .

    Many thanks xx

  • One thing I would just add to the comments already made, and lots of good advice given, is, you may well be depleted in B12 by the effects of anaesthetic after your operations. My low B12 wasn't found until I became very unwell after three laparoscopic ops, one for a gynaecological investigation, a gall bladder op, and an appendix removal. These were all within a two year period, and nitrous oxide used in anaesthesia has a known detrimental effect on B12.

  • Thanks for replying MariLiz. I had though the two ops I had within a few months of each other may of had a factor as Nitros oxide was used in both . The gynea op was also investigative and the longest surgery I've had . I was re admitted with severe unexplained bleeding a week later . My energy has been on the floor since but have felt very bad the last few months and this last few days has been awful ! So I'm very glad I've found this forum now .

    I hope you feel a lot better now.

    Many thanks xx

  • Thank you Kittycaite, yes I am feeling much better. My GP has agreed to giving me injections of B12 every six weeks, and it has helped enormously. I wouldn't say I was back to normal, but I definitely find my energy levels are better.

  • I'm glad to hear that MariLiz . I hope you continue to feel better ☆☆☆

    I have sent my GP and hosp team a detailed email with links . Fingers crossed for a proper diagnosis ! ☆☆☆

  • Hi,

    A link about nitrous oxide

    gov.uk/drug-safety-update/n...

    UK b12 websites

    pernicious-anaemia-society....

    PAS tel no 01656 769 717

    martynhooper.com/

    b12d.org

    b12deficiency.info/

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. up to date with current UK guidelines

    "Could it be B12" by Sally Pacholok and JJ, stuart. Very comprehensive book about b12 deficiency with lots of case studies.

    patient.info/doctor/pernici...

  • Thankyou Sleepybunny . Only seeing your reply now and I am a sleepybunny now too . I will read them in the morning . Many thanks xx

  • I read through the links . Great info . Thanks so much xx

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