Beginning to surface

Hi everybody. I'm nearing the end of my loading dose of B12 now and I am beginning to notice a slight improvement. I am less desperately exhausted, although I still need a lot of sleep and I do tire easily. Looking at how long it takes the body to build red blood cells back up to full strength, there is still some way to go. Blood donors, for example, are not allowed to donate more frequently than approx. 14 weeks.

What interests me is a really specific change in mood. I'm a successful career woman and not given to flights of fancy, but in the weeks leading up to me really pushing for a diagnosis (and then receiving it, and treatment) I had a strong, specific feeling that I was dying. I wasn't depressed (still enjoying, though being exhausted by, social life for example) but I felt as if something was telling me I was dying. That sensation has now gone.

It was so specific, that I think this could become a proper clinical diagnostic pointer, so I would be really interested to hear if anyone else has experienced something similar.

Good luck to you all in managing your long-term blood damage disorder.

36 Replies

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  • So glad to hear that things are on the up.

    Yes, the black dog used to hound me quite a bit. Mine manifested more in sudden mood swings. It took very little to get me to explosion point. Such sensations do seem to vary quite a bit, but something along those lines is, from all accounts, quite a common symptom of B12 deficiency. Unfortunately it's why so many sufferers are labelled as 'depressed' and ignored. Fortunately, it does seem one of the symptoms that goes fairly quickly.

  • hello

    The conviction That I was dying I can relate to. There years ago before I was diagnosef with PA I was given ciprofloxacine antibiotics by an inexperienced GP who was trying to cure my dysbiosis. The effect was devastating not only on my digestive system but more particularly on my nervous system. I suffered a mini nervous breakdown totally convinced That I was dying. I believe That the drug exacerbated my early P A symptoms. Neuropathy set in and I couldn't work for six months. PA was finally diagnosed last year. Whilst I don't feel I'm dying now, when my treatment was was less effective I would get vert down around sunset causing me to run around switching on the lights. The feeling has now subsided. On the subject of ciprofloxacine and other drugs in this family I would warn anyone with a compromised GI system against taking them, it was an experience I wouldn't wish on anyone.

  • Hi Expatkerry. Just thought I'd let you know that I had exactly the same effect from taking Ciprofloxacine (I also have a compromised GI system).

    All my symptoms, particularly neuro and gastric, have got worse and are not yet settled down to something resembling normal (for a B12 deficient).

    It's really worrying that GP's do not appear to be aware of the potential for devastating effects that this drug (or group of drugs) has.

    Like you, I would say to others: avoid like the plague.

    Take care x

  • Hi Janetmenzies. Yes, I also have suffered with very specific feelings that my body was breaking down, ceasing up and, in fact, dying! That's probably because it was!

    Like you, I wasn't depressed or anxious (though perhaps I should have been!).

    My body was definitely 'telling me' that it was not right!

    As Fbirder says, it's all to common for people who have this symptoms to be written-off as anxious or depressed. Disgraceful.

    So yes, very similar experience to you. Fortunately, this symptom does go quite quickly if I am able to get enough B12 (but try telling a GP that!).

    So pleased to hear that you are beginning to feel better after your loading doses.

    Might be worth mentioning that GP's are not good at prescribing the correct maintenance doses of B12 so if your symptoms start to return before your jabs, then it's likely that you need more frequent injections to keep well and effect proper repair.

    If you need more guidance about this, please post again and people here will offer more help.

    Take care.

  • That's a really interesting reply, thank you so much for sharing your experience. In my day job I'm a journalist, and now that I'm starting to have more energy, I'm thinking about things that could be done about this diagnosis issue. I have been talking to my practitioner, who is interested also, and I'm thinking about how it might be possible to arrive at some sort of diagnosis protocol for non-clinical symptoms. For example, not being unhappy, but rather just feeling ill, should not be diagnosed as depression because there are no clinical symptoms appearing on tests. So the more descriptions I can get about how people actually felt in the weeks and months before their diagnoses, the more helpful it will be. Your reply was particularly helpful because you were so precise about how you felt, ie, not "I felt awful" but "I wasn't depressed, anxious or depressed but I felt I had a serious physical problem."

    So thank you v. much for your feedback, and good luck with all your treatment

  • For me, I felt like my life was over and I had suddenly become like an 80 year old in terms of health, outlook and mobility.. I saw in my mind care homes, and dying way before I wanted to... But, not imminent death myself.. As a fighter and big mouth and legal advocate etc etc I wasn't going to die... If that makes sense... I actually now feel nervous about the future and my future as I don't seem to be able to get the right gp help, pick my battles as I've been driven to sneakily self injecting and try to turn that into a positive re being able to get the supplies and and actually putting a needle in myself ... I try not to waste my b12 on how angry I am at OUR predicament, and thank whatever family member from their cloud in heaven gave me the strength they send me... I wish this hadn't happened to me, but I lost my younger brother to throat cancer last June, so I have to be grateful that this won't kill me... Chin up and let's all hold hands together. X

  • Couldn't agree more Scorpiojo. Let's have more fighters, big mouths and people who refuse to be cowed!

    Really impressed by your determination...but isn't it awful that we have to take a DIY approach to getting well!

    Keep well....holding hands with you right now 😀

  • xx

  • Hello Scopiojo.

    I am sad for your loss, but your family up there will be 'looking over you'. About the injections. Have you tried, taking VitB12 in oral form as a supplement? It works for Mr. I still have my loading injection every 3 months,and take b12 supplements when I feel the need'

  • I take the under the tongue Solgar ones xx thank you

  • Hi Janetmenzies...a journalist...brilliant....there's soooo much you could write about b12 deficiency / PA...as you'll know from reading this site!

    The thing that angers me most (before we even get to getting the right treatment - another kettle of worms) is the way in which many patients have to wait YEARS for a diagnosis and suffer irreparable neurological damage in the process.

    And the path to diagnosis is littered with misdiagnosis (anxiety, depression, ME, CFS - at which point patients are 'written-off'') and even MS or MND.

    Along the way patients suffer a level of arrogance and hostility from medics that is truly astonishing and disgraceful (to put it mildly).

    Even after diagnosis, suffer's still fail to get treatment according to guidelines set by the BNF, NICE, the BMJ, and NEQAS (to name but a few).

    I could go on...and on...and on... So thank you for providing the opportunity for a small rant!

    But let me just say (before I go): sufferers in Europe can buy B12 over the counter and inject whenever they need to to keep well: dogs with B12 deficiency have injections every week!

    Here endeth the rant....

    If you have an outlet please DO write something...people here would love you for ever...and a day ❤️

    When I get some of myself back, I'm going to put a briefing paper together (with evidence) and take it along to my MP!

    And thank you for your best wishes...very much appreciated.

    Hope your health continues to improve and do post again if you need any help....the people here are very knowledgable and give freely of their time...truly humbling and brilliant😀

    Afterthought - you don't mention if you have neurological symptoms, but if you do....be aware that you will need injections every other day until no further improvement, then injections every eight weeks (though this is not enough for many). Your GP may not know this. But really important, because potentially irreversible neurological damage can occur if insufficient B12 is given in the early days 😖😖😀

  • I know just what you mean about what a shock it is to discover you have a long-term health problem, but just having the energy to fight is a big achievement. Good luck with all x

  • I actually suffered depression and anxiety for over 40 years - they were amongst the first symptoms to emerge for me - and when I started treating myself I didn't think they could possibly have anything to do with the B12 deficiency I was being treated for but as they have now gone I realise that they were connected.

    The point at which I gave up on my GP though was when I went to him because I was basically falling apart - really didn't have any balance and had got to the point where I had to physically check where the seat was and where my bum was when I was trying to sit down - this was when I was being treated and I think it was actually a response to the initial treatment that kicked off a much bigger problem with my cells having access to B12. Anyway he gave me the standard questionnaire test for depression and I realised that because it is loaded with questions about being tired that someone with a B12 deficiency was going to show up as depressed even when their mood was low. I would really like to see that questionnaire coming with a huge 'health warning' about looking for specific conditions that will cause symptoms that aren't related to mood but not sure that that would actually have helped me as the possibility of B12 would have been ruled out as a factor as I was receiving treatment.

    I believe engels had a similar experience with the 'depression' questionnaire.

    Having dealt with anxiety and depression for a large number of years I've learnt a lot about the way the brain works and doesn't work in relation to anxiety which I tried to summarise in this post on another forum

    healthunlocked.com/couchtob...

    It might give a clue as to why you were experiencing thoughts that you were dying.

  • My B12 deficiency didn't make me feel like I was dying. It did make me feel far older than I actually was. For example I remember thinking to myself, "Now I know why old people drive so slowly," when I realized that I didn't have enough energy to press the accelerator far enough to get up to the speed limit while driving.

    But I do know what you're talking about when you say it felt like you were dying. I had that experience recently with an as-yet-undiagnosed hypoxia problem. Thankfully that problem seems to have gone away as mysteriously as it appeared.

    I also know how it feels to have others presume you're depressed when there is something physically wrong. Just before my deficiency was discovered, I went to the doctor and begged her to find what was wrong (I didn't know anything about B12 at that time). She was convinced that there was nothing physically wrong with me and she asked me if I was depressed. I had to stress to her that I was becoming depressed because I was ill, but that the physical problem came before any depression did.

    I do want to offer a word of advice now that you are starting to see some improvement: Don't overdo it. It is really easy, once you start to feel a bit better, to think of all the things you couldn't get to when you were more ill and make a mile long to do list. But you have to consider that both stress and exercise (as well as sugar and alcohol) do lower B12 levels, so you'll need to learn to moderate your exposure. It doesn't mean you can't get anything done. It just means you need to be selective and manage your energy levels.

  • Galixe hello,

    Took me along time to discover my lack of energy something was connected to PA. But that is me. Stubborn.

  • Hi there! Can you describe the treatment that you were prescribed? I was given absolutely no guideline other than to take 1000mcg every day. I took it two days straight. I felt so anxious and sick. I felt like I was dying. I called my doctor's office and was given really no direction other than to decrease the dose. I still felt terrible. I've decreased to 250mcg over the past two days after a three day break. I just discovered this forum and am now wondering if I should just suck it up. Any advice?

  • In the UK there is a protocol to be followed once B12 deficiency is diagnosed. It is outlined at a website called nhschoices.co.uk It might be worth having a look at that site and perhaps showing it to your doctor, who might not be aware of it. Good luck with your recovery

  • Hi janetmenzies,

    Maybe you could check that link, it brought me on to GoDaddy site, lol

    J 🍀

  • aha! Yes, just put NHS Choices in your search engine and you will get there in the end!!

  • 👍

  • Thanks for the info. I'm based in Canada and I'm quickly realizing how little the doctors and pharmacists know about managing B12 deficiency. I feel like I've been left to my own devices!

  • Poor you. Welcome to our site.

  • Hi cb03px were you given injections? Maybe write a separate post, with any blood results with reference ranges if you can and the wiser more knowledgeable will answer

  • I was given little to no information. They said that I read at 163 and injections weren't offered. I'm hoping that I can go into the office and get a print out of my report. However, they are always so reluctant to do that. Which is why I haven't yet. Thanks though!

  • Make a new post there are guidelines and protocols that Drs have to follow, if they can exclude dietary reasons ie (strict vegan) you should have been given injections. But I'm still learning myself and don't know enough to advise you

  • Hello Janet, this resonated very strongly with me, I was convinced I was dying. It was as though my body was trying to tell me what was wrong. I kept having nightmares about being in hospital, and no one listening to me! I also was very unwell, getting infections one after another. My ability to fight these infections was getting less and less, all I wanted to do was sleep. Multiple courses of antibiotics weren't helping either. As I became weaker, the feelings about dying became stronger. Eventually I saw a GP who really listened, and asked for a very full series of blood tests. I'm convinced he saved my life.

    I wonder if years ago this was called "going into a decline", and people did just die?

    MariLiz

  • Thank you so much for your reply - that is so helpful for my research. You are right, in the old days that was what happened, hence the phrase "pernicious". I too was having nightmares and dreams about dying. This is definitely different from low mood or depression.

    I hope your treatment is helping

  • Hi Mariliz,

    You are describing my experience of discovering I had PA. 19 years ago.

    Good luck.

  • I'm two years into treatment, and feel much better thanks. My GP has agreed to me having six weekly instead of three monthly injections, and that has made a huge difference to how I feel.

  • Good, good.

  • Yes. I suppose that is why they called it pernicious anaemia... pernicious meaning deadly. I can remember wanting to buy a new dress when the weather was hot, then I thought "nah", I won't live long enough to get any wear out of it... this was just prior to being diagnosed. I wasn't depressed, just frustrated.

  • I can totally relate to that, I felt there wasn't any point in making plans or buying new stuff. I felt I had no future, that it was all just a matter of time.

  • So sad, isn't it? Especially when it's so cheap and easy to treat. The consequences of not treating are enormous.

  • Your post made me feel that I'm not alone. I finished my loading dose last week, felt a whole lot perkier, tried to go back to work yesterday and only managed a couple of hours before I needed to sleep for the rest of the day. What eventually drove me to the doctor's was the feeling that I wanted to die - I wanted to crash my car into a wall when driving, just so I would stop feeling so awful. But it is the brain fog that is most worrying for me, and I wonder whether I will ever get back to feeling like my old self again? My job involves absorbing lots of information and making very quick judgements, both of which I'm hopeless at at the moment.

    The other symptoms I have are extreme fatigue, light headedness, breathlessness, palpitations, constant upset stomach, 'slimey' tongue. These had been going on for years, thought they were normal....

    Am taking iron tablets 3 times a day as well because deficient in both iron and B12.

  • Hi there, thank you so much for your reply. That is exactly how I was feeling. I am finishing my loading course today, and like you, still find that I tire very easily, but feeling so much better. Like you, I have a challenging job where I have to manage information and often work very quickly. So far I have found my thinking much improved. The things that are helping me compliment the treatment: little and often small meals with plenty of protein; naps (I feel I can justify it!); and oddly enough, a gentle weight-training work-out really seems to fire up my brain and get the endorphins going. I don't feel like doing it, but have a personal trainer who really understands the situation and has helped me so much!

    Good luck with your treatment

  • Hello Janetmenzies.

    I was eventually diagnosed with PA when I was 43yr old. I was convinced I was going to die by 45yr. A thought which often came into my mind when I was nearing loading time? Imagine my surprise when my husband pointed out to me I was 46year old one day. Oh! I said. Smiling. Husband pointed out, the time you forecasted you would be dead by has passed.

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