Positive IF

After years of going back and forth to the doctor with symptoms, and being told I was 'just stressed/depressed' and did not have a problem because my serum B12 was 250, (despite taking high doses of sublingual B12 for years) I finally talked the practice nurse into taking an IF test. The results have come back positive. So now I have been booked in for a course of injections. I don't know whether to be happy that it has been proved that I do actually have a problem or angry that it has taken decades of feeling ill, hospital admissions and tears of frustration to get to this point. It was reading this forum that made me demand the test, which if I had not had, I hate to think how long it would have been before I got the help that I needed. So thank you to everyone on here for giving me the courage to fight for a diagnosis.

15 Replies

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  • So pleased that you now know that it's P.A . Outrageous though that you have had to wait so long for a diagnosis. Well done you for persisting in getting the diagnosis. When people feel so ill and are so confused it's hard for them to stand up for themselves ._The docs don't mind handing out anti- depressants , but loathe giving B12 injections . You will have neurological issues now Make sure you get the correct treatment. I have to practise DIY ! LONG LIVE THE PAS AND AWARD MARTYN HOOPER A PEERAGE .

  • Yes, I do have neurological symptoms and had to lay them on the line to the doctor, as her attitude was to just keep taking the supplements and have your blood checked regularly. I'm forgetful, lose words, dizzy, unsteady, brain numbingly exhausted constantly, can't feel my feet, tingling skin, muscle spasms - but that was depression/stress! I've got my first jab tomorrow. I just want to feel normal again.

  • You could be me, I too have my first jab tomorrow. I had loading doses 6 yrs ago and was cured according to GP. This forum has opened my eyes. Best of luck, I advised my GP of the 1 jab every other day until I feel no more improvement. She wasn't aware if the change.

  • Good luck with your jab tomorrow. Hopefully we will both be feeling better very soon :-)

  • Hi topazrat I remember "walking on air" 45 years ago when at last, 13 years after gastric surgery for the removal of two thirds of my stomach, I was at last after 2 Schilling tests diagnosed with P.A. At the very least I should have been found to have been B12 Deficient years before but there you go....

    So, I am pleased for you that you have got the diagnosis and there can be no argument about your treatment but saddened that you have been messed around and have had your health put in jeopardy by your doctor whose motto is supposed to be "Do no harm".

    There is life after P.A. and I'm still "clivealive" at 75.

    I wish you well for the future

    Just in case your doctor has mislaid her BNF Guidelines.....

    Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

    By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

    Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.

    The highlighted paragraph is the regime your doctor should be prescribing for you.

  • Thank you. I think that every single doctor at my practice must have torn up the BNF guidelines without even looking at them! Now I've got this far, I will be demanding the correct treatment. She's saying that after the initial loading doses, I will only be getting one jab every 3 months. I will be demanding that she follow the guidelines, trust me. I have found my inner Pit Bull (no offense to Pit Bull's intended)

  • I used to take my Rottweiler wife Gill with me to appointments with my "one size fits all" doctor who laughed at me when I said that I felt the return of symptoms in the run up to my next scheduled injection. "it can't be your P.A. because you are having the injections - it's all in your mind!"

    So yes topazrat you may have a fight on your hands but if you win your battle you will be helping the next patient along in this war to educate medical professionals to treat symptoms instead of just reading their computer screens.

    I wish you well and don't forget - have your Folate level checked as this needs to be "healthy" to process the B12. The two go together like peaches and cream.

  • Because of the supplements that I have been taking for a decade, my folate levels are 'very good'. Yes, I know I might have to fight, but as you say, if it helps somebody else, then it is worth it. There are three doctors at my surgery. No.1 said you don't have a problem and laughed at me. No.2 told me it was all in my head. No.3 berated me for not listening to the other 2 - so the Pit Bull in me saw red and demanded the tests.

  • As fbirder would say all three doctors (together with mine) missed the Wednesday afternoon training session on P.A. that year :)

  • When you start on injections, be aware that additional symptoms may appear. You may actually feel worse before you feel better.

    If you don't keep one already, start a logbook of symptoms. Try to assess a severity score for each one.

    Are you taking folic acid supplements? These are needed to support B12 in doing its job. Get the B12 set first and then the folic acid. It's a balance between the two.

    If you treat the jab as day zero and count from there each time, you will see the same sequence of symptoms over a 48 hour period.

    Pain and hunger are two counterintuitive symptoms that can arise from healing of the nerves. The brain interprets the stronger signals as pain and hunger until it recalibrates to the stronger signals. This can take a few days.

    Range of motion type exercise will stimulate healing of the nerves. Getting started is hard, but once you get going things get easier, especially if you tell yourself that the pain is only an illusion.

    The logbook helps you understand your body and in understanding gives you some control back. This eliminates worry and stress that make the pain appear to be worse, and unnecessarily consume lots of B12 in the process.

    The logbook also supports short term memory loss and allow you to monitor your progress as the healing process for nerves is very very slow.

    Try to also identify a "marker" symptom that you can use to identify when you need an injection again.

    Provide the list of symptoms to your GP each time you visit and discuss the plan to monitor yourself so that when you do ask for more frequent injections, they don't treat you like a complete hypochondriac.

  • Thank you that is very informative. Yes I'm already taking folic acid. Hunger might be a good thing because I'm quite underweight at the moment - I just have no appetite. They already think that I'm a hypochondriac, but hey, I don't mind that as long as I get what I need.

  • We all go through the hypochondriac stage. Just stay calm when discussing with your GP.

    Mine diagnosed anxiety for me. The antidepressants gave my additional symptoms including tinnitus.

  • Loss of appetite can be a sign of low b12. It may take a while to return.

  • Well done for your persistence, I can empathise wiht your experience of being told you are just depressed.

    If you are UK based, before you see GP again I would recommend reading ....

    1) BCSH Cobalamin and Folate guidelines

    b-s-h.org.uk/guidelines/ click on "Diagnosis of b12 and Folate Deficiency".

    Outlines what UK doctors should do with people who have low B12 and/or are symptomatic for B12 deficiency or folate deficiency. If it's taken years to get them to order an IFA test then it's possible that they have not seen this document. Useful flowchart outlining diagnosis and treatment about three quarters through. Also details of UK b12 treatment for B12 deficiency with and without neuro symptoms about quarter through document.

    Don't be surprised if you have to fight to get correct treatment for PA with neuro symptoms.

    There seems to be a lot of Uk people on here who only get the standard treatment for B12 deficiency without neuro symptoms (6 loading doses over 2 weeks then injections every 3 months).

    UK treatment for B12 deficiency with neuro symptoms is loading doses every other day until symptoms stop improving then injections every 2 months.

    2) Pinned posts on this forum. I found the summary of mainly UK b12 documents fbirder compiled very useful. Has lots of quotes that I found come in handy with medics who have not done their homework on B12. Link to his summary in third pinned post (last link in list).

    3)Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. He is the chair of the PAS.

    Some people join the PAS (Pernicious Anaemia Society). They are helpful, sympathetic and a good source of info. Members can access details of local PAS support groups. The PAS can sometimes intervene on behalf of members.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    UK B12 websites

    b12deficiency.info/

    b12d.org

    Another B12 book I found useful "Could it be B12" by Sally Pacholok and JJ. Stuart

    I am not a medic just a person who has spent years trying to find answers.

  • Thank you. I'm sure that I will have to fight. I'm still trying to explain that a serum B12 of 250 does not exclude P.A! They should be looking at the positive IF and my symptoms. I'm used to 'educating' doctors though. One of my children has C.F. and with a little research, I knew more about the condition than the doctors, so I've had 27 years of educating ignorant doctors.

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