Confused and not sure what to do next?


I have been reading a lot of the great advice on here and learning a lot of information. I have had an insidious onset of symptoms ie migraines, feeling tired, sleeping lots, pins and needles in legs, muscle pain and weakness, brain fogs and memory loss. GP happy hypothyroid under control, treating me for iron deficiency Haemoglobin 10.3, ferritin 6 and iron 3l. MCV microcytic.

B12 is 201 (range 180-2000), serum folate 5.4 (range 2.8-20).

GP decided my symptoms are psychosomatic which is condescending and will only treat B12 when it falls out of range. My confusion is that I want my B12 def to be on record as feel only way it will be taken seriously but would I be risking permanent damage if I wait a few months.

The difficulty is treating the blood results and not the symptoms. Thank you for any advice.

8 Replies

  • Hi,

    Have you rung the PAS, They are helpful. You can leave a message and they will get back to you. The library section on website has a lot of useful info.

    pernicious-anaemia-society.... 01656 769467

    Other useful info

    "will only treat B12 when it falls out of range"

    Recent documents have made it clear that symptomatic patients with "normal" range results should be treated. Does your GP have copies of the following.... Useful summary

    Google "BCSH Cobalamin and Folate Guidelines". I found page 29 useful as it is a diagnosis flowchart and mentions symptomatic patients within range and also those with negative IFA (Intrinsic Factor Antibody) test results.

    As far as I know, the NHS is supposed to be following the BCSH guidelines.

    Books; Could It Be B12 by Sally Pacholok, Pernicious Anaemia: The Forgotten Disease by Martyn Hooper, Living with pernicious Anaemia by Martyn Hooper

    I checked my symptoms against the following lists. Treatment for B12 deficiency with neuro symptoms is more intensive than for B12 defic without neuro symptoms. GPs can find info in the BNF (British national Formulary) Chapter 9 Section 1.2.


    "GP decided my symptoms are psychosomatic"

    So sorry to hear this. A lot of people with B12 deficiency experience the same thing, myself included.

    Besides the serum B12, folate and ferritin tests have you had any of the following; MMA, homocysteine and Active B12 (transcobalamin).

    These tests are available privately if GP won't order them and can help in the diagnosis of b12 deficiency. The results of these tests are very likely to be compromised if patient is already taking B12 so a lot of patients try to get them done before they take any b12.

    I assume you've had a FBC (Full Blood Count) recently if you know your red blood cells are microcytic. I keep a close eye whenever I get a FBC. If your iron deficiency is sucessfully treated you should see a rise in your MCV. Patients with B12 deficiency or PA sometimes get macrocytic red blood cells. High MCV and high MCH can indicate the possibility of a macrocytic anaemia.

    Another blood test that can be helpful but is rarely done on NHS is a "blood film" or "blood smear". This can show up unusually shaped blood cells. If you have both iron deficiency and B12 and/or folate deficiency you may get both macrocytic and microcytic cells in the sample. I think b12 deficiency affects neutrophils as well.

    Is there a family history of B12 deficiency or PA?

    Have you ever been checked for coeliac disease?

    I always get paper copies of my blood test results so I have proof. In the past I was told my results were "normal" and then found some weren't when I got copies.

    "My confusion is that I want my B12 def to be on record"

    I think you are right to be concerned about this. I tried desperately hard to get a diagnosis but failed and in the end as an absolute last resort decided to self treat. Unfortunately I have "burned my bridges" in the sense that I will almost certainly never get a diagnosis from the NHS and am faced with paying to treat myself for the rest of my life.

  • I'm a psychiatric RN among other things and, as I learn about B12 deficiencies (not from any hospital) I am just appalled at how often these must have occurred in the psyche hospital I worked in for 20 years, undiagnosed and treated with drugs that made everything worse. But I am almost more appalled to know of how GPs dismiss women especially with psychobabble explanations. It is like they either cannot admit they don't know what they are doing or even worse, that they actually enjoy upsetting these patients, as an abuse of their power. It is just so unjustified to tell so many people they are imagining things or neurotic. It is like a neurosis in itself. It reminds me of the ancient Greeks who looked far down on women and coined the term 'hysteria', meaning 'wandering womb'. Its in the same league as medieval villagers calling women they objected to witches.

    I live in Australia so at least I can change GPs easily, but most of them are in the same boat.

    Best of luck. Hope I have not made you feel worse.

  • Add to the B12 issues all those with thyroid issues which get similar dismissal. Then consider how frequently B12 and thyroid issues go hand-in-glove with each other. The picture looks even worse.

    One classic paper showing the relationship of thyroid and "madness":

  • Looking for something else, I've just come across this research:

    "There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients."

  • Thyroid and B12 autoimmune disease, together with neurological signs, puts you in two high risk groups for severe PA/B12 def. (researchers believe leaky gut is the ground zero of autoimmune disease), so it's shocking that you should have these symptoms dismissed so cruelly. It is a good idea to record your symptoms and the following guidelines and information in writing to your GP (templates below) as I'm told that their biggest fear is of being sued : for writing letters)

    For a start, I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as soon as possible as your B12 IS low -

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

    "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." - 'Could it be B12?' By Sally Pacholok & Dr J. Stuart :

    "Tingling felt in the hands and feet can be the first sign of nerve damage due to B12 deficiency (reported by 65.7 per cent of respondents), and can lead,to numbness in any part of the sufferer's body, but is felt usually in the feet." :

    “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."

    The BMJ research document already given by SBunny is supported by many research papers and is peer reviewed. I'll put the summary in a separate post if you want to copy and print out with your letter if you think GP won't read full document. 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 the treatment is - it is the clinical condition of the patient that matters....

    I hope this helps you get the better treatment you need Lizzie.

  • Cmim/BMJ Research 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."

    This recent question in the House of Lords might also buck up your condescending GP:

    "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

  • Polaris....It is so scary when you read it put bluntly like that. I have been struggling for 4 years or more with B12 deficiency symptoms, but because my serum B12 is high, the doctors I've seen dismiss the symptoms. I have so much information I'd love to post or present to my doctor, but it would just end up with me being made to feel persona non grata. I am in NZ and I've already changed doctors to try and resolve the situation, but to no avail. That's why I'm now self-injecting.

  • I'm so sorry, I didn't mean to scare you and should have realised from your name that you were from NZ!

    It scares us but why I'm wondering doesn't it get through to them then ? So depressing that this is the same in NZ too.

    My relative had severe B12 def, and is recovering really well after eventually being on monthly injections as well as supplementation with Jarrows Methylcobalamin 5000 mcg, SL. It took over a year of battling and me bombarding the practice with guidelines. Luckily, she then eventually found an Indian doctor in the practice who was willing to give more frequent injections (Indian doctors know more about B12 often having first hand experience of treating Hindu vegans and vegetarians).

    I hope you begin to feel much better soon LadyNZ and well done for taking matters into your own hands by injecting yourself.

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