Is it M.E fibro or pernicious anaemia

Hi everyone

I was diagnosed with the above after years of being unwell

Always had asthma and ibs mainly loose bowels up to 15 times a day sometimes... Recurrent cysts in uterus and ovaries and premature menopause at 36 resulting in total abdominal hysterectomy at 41.... Since then bowel problems worsened and stomach

After two flexible sigmoidoscopy a colonoscopy and gastroscopy was told two years ago had helibactor pylori after super strong eradication treatment for that which made me feel like death a hydrogen breath test gave me the all clear..... Then I got chickenpox .. My health went rapidly down hill and now housebound alot of time bedbound (single mum of 2 )

Diagnosed with ME fibromyalgia osteopenia raynauds phenonomen and bulging discs in neck and lower spine with trapped nerves

Main symptoms

Extreme fatigue

Tremor

Shortness of breath

Slurred speech forgetfulness

Numb lips (tinged blue) hands feet

Tingling in face and other parts body

Shooting pain

Palpitations

Ringing in ears

Weakness

Constant ruination

Dizziness

Bleeding gums

Sore eyes/blurring

Lost sense smell/taste

Bruise easily takes ages to heal

Hair doesn't grow underarm legs eyelashes

Prominent blue veins everywhere

Balance problems

List endless

On last blood tests in May high MCH and low MPV

Doctor said nothing to worry about

Oh and lastly my nan had pernicious anaemia and died from it 😢 years ago when I was 10

I also get every virus/infection going

Any help please

12 Replies

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  • sorry you have really been through a lot.

    Unfortunately there is a lot of overlap between the symptoms of B12 deficiency (whatever the cause - PA is one cause) and those of other conditions - and it isn't uncommon for more than one condition to be involved.

    The best first step is probably to ask to have a serum B12 test done. This needs to be done before you start any form of supplementation as any form of supplementation will affect the result and may well make them totally useless. Folate should be checked at the same time as this could also be part of the problem.

    It would also be useful to have a checklist of the symptoms - you can find one here -

    pernicious-anaemia-society....

    with those that are relevant to you ticked

    Unfortunately this isn't a gold standard test for B12 deficiency and untreated there is a risk of permanent nerve damage so the recommendation in the UK is to treat on the basis of symptoms not test results. However, it can be very difficult to get a doctor to recognise this, particularly if they think there are other things going on.

    It is possible that the doctor may dismiss B12 as not relevant - many still think that anaemia has to be present ... and it is also quite difficult to really recognise just how much a single vitamin can affect people unless you have actually been there.

    Assuming that you are UK based then the BCSH guidelines may be of use in disabusing a GP who believes it can't be B12 because you aren't anaemic

    bcshguidelines.com/document...

    The summary is also good in underlining the importance of treating early and may be useful at the next stage if your test results aren't clear cut.

    Don't just take 'normal' as an acceptable response but please get a print-off of the results and you can post them here for more advice/comments from this community ... but if you do post them here please bear in mind that this forum is open to the public so keep personal details out of photographs. You might also want to the post private so it is only visible to members of the community.

  • Hi I went back yesterday and my bloods from July my MCH had gone from 32.5 in May to 33.9 now and MPV from 7.2 to 6.2

    My oesophinil was raised at 0.6 these were all flagged by the lab yet my GP will not do the blood tests I want my serum folate was 419 in May now it's 410

  • you need to give units and range if possible - the folate is incredibly high on the scale I'm used to ... or did you mean B12.

    Probably best to do a specific post as people may not notice it and respond if it is buried in an older post.

  • "On last blood tests in May high MCH and low MPV

    Doctor said nothing to worry about"

    Did you mean low MCV?

    Low MCV could indicate the possibility of iron deficiency anaemia as low iron makes red blood cells smaller.

    High MCH could indicate the possibility of a macrocytic anaemia. I'm surprised that you have a combination of high MCH and low MCV as often if MCV is high then MCH is high.

    You could ring the PAS. If you leave a message they will get back to you.

    pernicious-anaemia-society.org Head office: 01656 769 717

    There are a couple of posts on teh chairman's blog where he talks about people being misdiagnosed with ME/CFS when they actually have PA.

    martynhooper.com/

    This website is also useful

    b12deficiency.info

    useful articles

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

  • Hi

    No it's MPV that's low and MCH high

  • Good luck with finding answers.

    Info on FBC (Full Blood Count)

    patient.info/doctor/full-bl...

  • What's that

  • Hi,

    The FBC (Full Blood Count) includes results for MCV, MCH, Haemaglobin, Haematocrit, Platelets, white blood cells plus others.

    The link includes more information.

  • Ok thank u

  • Sounds to me like you may a thyroid issue here. You need to get a FULL thyroid panel including FT3 and FT4 and post the results on the thyroid site here.

  • 'Doctor says nothing to worry about', leaves me speechless DB.... when your physical, psychological health and livelihood is at stake here?

    High MCH or MCV is a sign of enlarged red blood cells (anaemia) and B12 deficiency, plus you have all the neurological symptoms of severe B12 deficiency and should be treated as BNF indicates in BCSH guidelines. I hope this and the links below will help persuade your GP to take your symptoms seriously as there is a short window of opportunity before symptoms become irreversible.

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    My relative was misdiagnosed with ME/CFS for years when it turned out to be severe B12 deficiency. It was a battle with the surgery but she is now doing we'll on monthly injections, supplemented by Jarrows Methylcobalamin SL (good reviews on Amazon for neurological symptoms).

    Vitamin B12 is involved in building DNA and having PA in the family is another significant factor.

    Martyn Hooper, addressing the House of Lords in June this year, wrote this:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA. We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands and that is what I will be talking about on Tuesday. "

    Another debate in the House of Lords:

    "To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of perniciousanaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014.

    To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed.

    Countess of Mar - Crossbench"

    theyworkforyou.com/wrans/?i...

    Other links:

    b12deficiency.info/films (useful templates on this site for writing to your GP).

    The latest BMJ research document with summary if GP won't read the document:

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

    This 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 is important.....

  • yes, leaves me speechless as well..........................unbelievable???

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