Feeling despondent

Last summer I was found to be b12 deficient (level at 180) I had symptoms of neuropathy and was at the end of my tether after years of being on antidepressants and having results of vit d and folic acid deficiency at various times.

I had the standard loading dose, felt some improvement but felt I could have done with a few more to continue getting better. However I played ball with what the go wanted.

Whilst waiting for my 1 shot every 3 months I moved house (and gp) they insisted on checking my b12 before giving me an injection. My b12 was 435 (November 3 months after my loading doses and further oral supplements). My gp said all was fine, I did not need treatment, even though I still have neuropathy symptoms. I went back to the gp in February at which time, I was put back on antidepressants.

I have had 3 months taking this awful medication that makes me feel worse, I demanded another blood test. My b12 had dropped to 345 since November. But the go has said I definitely do not have b12 issues.

I'm feeling pretty upset and despondent as feel that I will have to be on my knees in the next year or 2 for them to finally agree with me....but the gp has already started to talk about chronic fatigue, rather than find a solution to help me.

Advice? Anyone?

14 Replies

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  • My temptation would be to ask the doctor to prove it is chronic fatigue before sticking that label on you. Did you know that some people suffering from chronic fatigue have been found to have chronically low blood volume? They are basically constantly anemic, but in a way that doesn't show up on standard blood tests. Blood volume testing is not typically done, so don't expect your doctor want to pursue it.

    You should definitely bring up the fact that the antidepressants are not working or are making things worse.

    Have you considered self injecting?

  • Thank you for replying, it's helped a little on this bleak day! Useful info x

  • Hi

    Here we go again another GP who hasn't a clue about b12 deficiency your symptoms and levels etc are identical to mine and I know what you are going through. Tell me when they diagnosed B12 did they check for Pernicious anemia as well? What your gp doesn't seem to understand is that with injections your level is going to rise and it should rise higher. My first reaction is to suggest you get the NICE guidelines from the forum and read them then book another visit to your gp and take a family member with you to back you up. Don't let the gp fob you off and show them the relevant information asking to be tested for PA as you have confirmed your B12 is falling again. If you cannot absorb B12 then you need injections for life. Do you have any issues with your stomach ,and are you on any stomach meds?

    My suggestion would be to join the pernicious anemia society it costs £20 and they will support you even ring your gp. Hope you get sorted and keep in touch

    Mark

  • Thank you for your response, stomach issues not really, always been bunged up, but nothing awful. No tummy meds.

    I'm feeling like I am going mad, I go and see them and discuss things factually but respect their decision and try what they suggest. But I feel like I'm banging my head against a brick wall. Unfortunately there is no data out there which shows what your b12 levels should be after loading dose treatment. My gp today said they wouldn't be prepared to test me now for another year as the b12 injections will be in my system for 2 years.....face palm moment!

  • Your GP goes not know what he is talking about, and he is not even following the NHS guidelines for B12 deficiency. (No retesting after loading inj.}

    Also, with neurological symptoms you should have injections every 2 months.

    Do read and print out the guidelines (check past posts by Sleepybunny and fbirder to find them) and take them and someone with you if possible, when you go to see your GP.

    Perhaps your new GP will see the light !

  • Thank you, again helpful advice. I feel like I've been battling a system that seem to be keen on ignoring and dis-regarding B12 deficiency but are all too keen to give anti-depressants, it's sad.

  • Hi ellabellabee I'm so saddened to read this.

  • Thanks for your support Clive, it helps that there are a few people out there that understand.

  • Hi.

    "gp has already started to talk about chronic fatigue, rather than find a solution to help me"

    There are quite a few on this forum who have been diagnosed with ME/CFS before getting a diagnosis of B12 deficiency.

    B12 deficiency can be misdiagnosed as ME/CFS.

    b12deficiency.info/misdiagn...

    martynhooper.com/?s=me%2Fcfs

    b12deficiency.info/blog/201...

    b12deficiency.info/blog/201...

    A lot of PAS members get diagnosed with something else before getting PA diagnosis.

    pernicious-anaemia-society....

    My experience was that once I got a CFS diagnosis , virtually all investigation into physical causes for my symptoms stopped.

    Martyn Hooper's book "Living with Pernicious Anaemia and Vitamin B12 deficiency" has several case histories and I think includes people who were diagnosed at first with ME/CFS.

    There are more case histories in "Could it Be b12?" by Sally Pacholok and JJ.Stuart which I think includes some who were diagnosed with ME/CFS/PVFS at first.

    Are you in UK?

    It can be helpful to know which country you are in as different countrie shave different patterns of treatment for B12 deficiency.

    If yes, I'd suggest you read "BSH Cobalamin and Folate Guidelines" a Uk b12 document

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH Cobalamin guidelines

    stichtingb12tekort.nl/weten...

    flowchart makes it clear that in UK, people who are sympotmatic for B12 deficiency shoudl have an IFA Intrinsic Factor Antibody test and start B12 treatment. this applies whether B12 is low or within range. It's possible that if you are in UK, your GP may not have seen this document. i gave a copy to my GPs.

    Are you symptomatic?

    b12deficiency.info/signs-an...

    pernicious-anaemia-society.... see PAS checklist

    I gave a copy of PAS checklist to my Gps with all my symptoms ticked.

    b12d.org/admin/healthcheck/...

    Other b12 info

    Some info below may not apply if you're not in UK.

    1) pinned posts on forum. I found fbirder 's summary useful. link to summary in third pinned post.

    2) BMJ b12 article

    bmj.com/content/349/bmj.g5226

    3) BNF British National Formulary chapter 9 section 1.2

    evidence.nhs.uk/formulary/b...

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.

    5) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart

    6) PAS Pernicious Anaemia Society website

    PAS has members from a round the world

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Martyn Hooper's blog about PA and B12 issues

    martynhooper.com/

    7) B12 deficiency info website

    b12deficiency.info/

    Lots of b12 info and an interesting blog about B12 deficiency

    8) b12d.org website

    b12d.org

    What to do next?

    b12deficiency.info/what-to-...

    Who gets PA and B12 deficiency?

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    pernicious-anaemia-society....

    Unhappy with treatment

    Letters to GP about b12 deficiency

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    UK charity that offers free second opinions on diagnoses and treatment.

    hdapatientcaretrust.com/

    Most important thing I learned

    .....was to always get copies of my blood tests. In relation to b12 I look at B12, folate, ferritin and Full Blood count (FBC).

    I am not a medic just a person who has struggled to get a diagnosis.

  • Cheer up. I was in the same boat as you 1 year ago, but with the help and information gained from people on this site I am doing better and am cheerful although I have other problems as well.

    I too got upset, and left the GP's office crying when he said no more B12 injections because a retest was in range now! (one of the symptoms is mood) and I know my B12 is low when I get upset.

    You now have the information from sleepybunny.

  • Hi Ellabellabee, as others have said, do not be fobbed off by your GP. The fact you have had injections will lift your level, but this reading is only what is in the blood not what is working at cellular level. Read the information suggested and go back to your GP informed. I think making your doctor aware that you know what you are talking about makes them less likely to dismiss you. I think you should go back straightaway. If you waited a year or so who knows what further neurological damage would occur. Also feelings of depression and distress are all symptomatic of b12 deficiency. My own b12 level was 164 before I finally had b12 test taken by that time I had major neurological issues, and many symptoms. I wish you well.

  • Hello ellabellabee, I feel your frustration - think you must have the same GP as me!! Its rather curious that GP's now seem to be handing out quite freely a diagnoses of CFS/ME - it doesn't seem that long ago when the medical profession denied its very existence. But there is one thing for sure, you are very unlikely to be suffering from an anti-depressant deficiency.

    You already have loads of good advice to follow, but look at the following link regarding common drugs which can cause nutrient deficiencies. A short way down you will find those for anti-depressants which includes B12 etc. Its written by a pharmacist who to my mind know more about the subject than GP's. Its just possible that the anti-depressants may be exacerbating your problem.

    Good luck and don't give up.

  • Forgot the link, sorry:-

    alive.com/health/common-dru...

  • This is just so wrong! It makes me angry that GP's are prepared to completely disregard the NICE guidelines, but are more than happy to dish out antidepressants. You need B12, and I really hope you can get through to you GP that this is vital to your wellbeing.

    The Pernicious Anaemia Society do have advice booklets for GP surgeries. Have you approached them for help?

    Very best wishes

    MariLiz

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