B12 deficiency

Last year I got diagnosed with B12 and B9 deficiency, with my B12 level on 111. Because of lack of understanding, diagnosis, fallow ups and treatments, I ended up with a few injections that costed 20 euro each and then nothing. Not to mention that I didn't take anything for the B9/folate. By this time I had massive pains in my fingers/toes, hands/feet, legs/arms. 2 cysts on my spine that was constantly swollen up, I felt weak to the point that I couldn't hold my mobile phone nore understand how to use it to call for help. I was getting aizhimer symptoms, "sugar crashes", massive hunger no matter how how much I ate. I felt that my body was starving and felt like I was slowly dying. Not to mention that I was depressed, mood swings, hysteria and not to mention a strong impulse just to end it all, even theogh it was not what I wanted. But every one kept telling me I was fine. 4 weeks ago I got so week and shaky, I couldn't move, think answer past feeling pain, struggling to remain consciousness I finally gave in and let my partner carry me to the emergency doc. And there the doctor asked over and over again if I had taken any illegal drugs, and corrected my partner when he tried to explain that I have B12 deficiency and allergic to most drugs. The doc gave me an injection and sent me home where I was in a half conscious/coma state. We changed doctors and he put me on a 5 days B12 injections, get off my birth control and then wait 6 months before going any further to actually find out if I have b12 deficiency. I felt great for 2 weeks, but now I can feel the symptoms coming back again. Called the nurse to find out my results for pernicious anaemia, and she said my B12 level is over average and I'm healthy and hanged up. Even theogh I informed her I was on b12 injections when the test was done... I feel like I'm fighting a loosing battle. I've seen 7 different doctors in 2 year's and all of them keep telling me I'm fine to the point that I start to think it's all in my head. Some insight would be wonderful

9 Replies

oldestnewest
  • Hi Geraldie are you in the UK?

    Your alternate day injections should have continued until there was no further improvement to your neurological symptoms and if you were folate deficient that too should have been supplemented.

    I am not medically trained but there are others on here who will give you good advice

  • Hi clivealive, thanks you for the reply. I'm in Ireland currently. I'm taking folate tablets now after doing some research. (the nurse said it wasn't important). I find it weird as well that the doctor told me to wait 6 months. I don't know if I can physically wait that long and I have been "crashing" badly for the past 2 days. I'm having a hard time getting up in the morning. I keep falling back to sleep and struggle to keep my mind awake long enough to get out of bed. Not to mention the constant headache.

  • PA is one absorption problem that can lead to B12 deficiency - the test for PA is totally different from the B12 serum test.

    Once you are on B12 shots the serum B12 test becomes even less useful as a guide to what treatment you need / whether you need treatment and is only significant if it comes back low. On average people who are being treated for B12 deficiency report needing levels of serum B12 well above the normal range in order to feel okay.

    Unfortunately you are far from alone in struggling with GPs and nurses who know very little about PA/B12 deficiency and there is a lot of unhelpful half-truth and mythology out there to compound things.

    There is lots of information in the pinned posts and in replies to other posts that you can use to educate yourself and, if they are open to it, your GP.

    Personally I can trace my symptoms back over 40 years before diagnosis - and it then took me a further 18 months to figure out that I needed to take control of my treatment and work out what works best for me.

  • Thanx allot for the info gambit62. I've Started taking some control, and learn as I go along. My diet has changed drastically (lactose intolerance and constant recurring helicobacter/katarr). If I don't eat every 2 hours I crash. I would love to hear how you handle the mental process. I tend to freak out when I can't remember what I'm doing, the enxiety and remorse overwhelming. 28 is not an age to experience dementia.

  • I find that making sure I'm getting the B12 I need is the biggest help with all the mental side of things - including the brain fog and memory problems - but before I knew it was B12 I also found that mindfulness meditation helped a lot with stopping the anxiety loops.

    you might find this post on a different forum interesting/useful.

    healthunlocked.com/couchtob...

  • Thank you so much for the link. Went straight to the heart. As you've realised I'm fairly new in this, and to finally realise/understand it better, and hear other people sharing the similar experience is giving me some relief. Thank you.

  • It's really really hard when you're in the midst of it, but remember with adequate treatment your cognition will improve. Any pressure you can take off yourself in the meantime will be helpful. You're not crazy. I hope your partner is supportive:)

  • My heart goes out to you. Our experiences are very similar. You're not crazy. And it's torturous because you never get a break when you're in the midst of deficiency.

    It may be a tricky situation with doctors- Most will just test serum, which will be raised in the wake of supplementation. Then it's hard to convince them a deficiency existed.

    But the conversation with your surgery sounds odd. Did they not investigate a cause of the deficiency? Was the test positive for PA? Because the cause of the deficiency, as far as it can be discovered, will guide treatment.

    You are undertreated, and you shouldn't have to suffer a relapse for 6 months! That's not helpful. You are undertreated right now. You shouldn't have to suffer needlessly.

    Ideally you would want your doctor to monitor you. But hearing the severity of your symptoms, and if your doctor continues to be unresponsive,all I can say is I know what that feels like and in that situation I'd be starting self injections.

  • Heya Allison1, thanks for your reply :-). When I found out that I had B12 and folate deficiency last year they put me on injections once a week for a month and that was it. To be honest I was fairly naive and trusted whole heartedly that the doctor would know what to do. And at the time I didn't have much money to spend (50 euro to see a doctor and 20 euro to get injections). The issue here in Ireland is that doctors often refuse to prescribe B12 injections (money scheme), and it's near impossible to find anything reliable on the net here in Europe. I also had to pay 50 euro to buy my own test for helicobacter... Sigh... The current doctor I have is more knowledgeable in the subject and of my understanding is that the birth control I was on might have affected the test so that's why I've to wait 6 months to redo another test. He's the only one that is doing a fallow up with Pa, but when I called the nurse for info she said everything was fine... Right now Im pretty bad shape, I hate emitting it, but I'm not OK. I'm just gathering all my energy so I can go back there and kick some butt :-p

You may also like...