Help with symptoms please

Hi - not used to posting yet! My daughter at 25 has been suffering from extreme symptoms and more for over 9 months- pain and pins and needles in legs, hands, headaches everyday, exhaustion and weight gain. Had daily diarrhoea for 9 months or more and pain spleen area. Rheumatoid factor of 40 - should be 10? B12 on low side but Gp said not low enough for injection ! Rheumatologist this week said why no injection? She's had head and spine MRI - all clear thankfully And now further bloods and MRI of hips ordered and referral to gastrologist awaiting. She's pushed herself to go on charity trek up Machu Pichu last September and symptoms heightened sice then. She still pushes herself to work everyday somehow but has no other life . Now on NAX and D3 and B12 sublingually but desperate to help her feel better! I'm hypothyroid for 30+ years and always told to diet etc and some improvement now on T3 only. Seen Dr BDP 6 weeks ago who said very poor adrenals but no real change maybe due to diarrhoea ?? Help??

6 Replies

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  • Monika53, if you post your daughter's thyroid and vitamin/mineral results with the lab ref ranges members will advise.

    Has your daughter had coeliac blood screens to rule out gluten-intolerance or been referred to gastroenterology for investigation into chronic diarrhoea? If the diarrhoea started after her trip she may have picked up a bug.

  • Thank you Clutter- she is being referred now for investigation but by the rheumatoid consultant , not our GP! I will post results as soon as she gets her latest from last weeks bloods but not sure what they were ordering. Thanks for your help x

  • I would agree with rheumatologist - why no injection? According to the book, "Could it be B12, "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml. 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.

    Autoimmune thyroid disease and B12 deficiency are often interlinked and overlap, but severe fatigue, tingling, headaches, are neurological symptoms of B12 deficiency, as well as diarrhoea, and should be treated without delay, as there is a critical window of opportunity before neurological damage becomes irreversible.

    These links give lots of information and advice on writing to your GP to ask for B12 injections, which would be the ideal treatment:

    b12deficiency.info/signs-an...

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

    Cmim/BMJ document. " Summary:

    * 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 the patient is of utmost importance."

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

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

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    Best wishes for a goo outcome.

  • Thank you - will try to go with her to Gp and take articles !

  • Hi,

    You may find these sites/books/documents helpful.

    b12d.org

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

    You can leave a message and they will get back to you.

    ukneqas-haematinics.org.uk/...

    patient.info/doctor/pernici...

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    You could google the "BCSH cobalamin and folate guidelines" which came out in 2014.

    One of the pages is a diagnosis flow chart.

    It may be helpful for you to have a look at the PAS (Pernicious Anaemia Society) community on Health Unlocked if you have time.

  • Thank you - everyone has been very helpful - I have her results so far which I'll put in new post

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