B12 deficiency Advice!! Help please!

Hi there,

I am 22 years old, it's been two month i found out I have b12 deficiency. I have sever brain fog, memory loss, I can't read. I am a ucla premed student I had to drop out of my classes. For the last two months I can't drive or even get out my house for groceries. My eyes see blurry even when I wear my glasses, everything seems dark to my eyes. Because of my situation I feel very depressed and hopeless. The brain fog and seeing blurry is the worst. I feel very disconnected and alone. I feel like no one understands what I'm going through.

Ive been getting b12 injection weekly (had 4 of them already). Every time I have the injections I feel awful for a day even my brain fog gets worst which is very odd.

I was wondering if anyone went through this and they feel better now? does it get better? do you get back to your old self and your health?

I'm very worried I will never get better :(

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  • I am not a doctor but a somewhat of an expert patient and I do have medical knowledge being a retired podiatrist. Your symptoms sound severe, and since B12 is not toxic you could no doubt benefit from B12 injections every other day, for at least 2-3 weeks or until the symptoms improve.

    Also, when the body receives enough B12 to begin to repair the damage, there is a corresponding worsening of symptoms as the nerves and other tissues 'wake up' so to speak.

    You will get other replies from people on here with far greater experience than I, since the B12 part of my journey is relatively new. However, because it is new (this is now my fourth week of alternate day self-injecting) I am closer to your experience and understand how worrying the worsening of symptoms can be. I began to improve after around the 10th injection. Some of my symptoms seem to have included feeling very ANGRY :x and my mood was very unstable. It is getting much better - as is the foggy thinking, wobbly balance, numbness in some fingers ...

    This is another site that you may find some other interesting information on:

    b12d.org/

    Don't panic, it will rectify itself, but that amount of damage takes time to repair. Be kind to yourself, rest, eat well, take it easy and stroke dogs! (The last one is a personal preference, but one with scientifically well-documented benefits, so I stand by it. :) )

    And this horrible experience will make you a brilliant medic. Good luck be with you.

  • Hi there,

    yes it is very fighting, I try to be calm about it but there are days when I get very frustrated.

    I have a fluffy dog and I always hug him, it comforts me a lot. :)

    Thanks for the website, it looks like it has great information, I will spend some time reading it.

    Thank you so much for your kind advice, wishing you all the best!

  • Hi VH1993 Sorry to read how poorly you are feeling despite having had 4 B12 injections but sadly it is not uncommon for symptoms to appear to get worse before they get better as the B12 starts the healing process. Hopefully things will improve but it will take time as it's not a magic overnight cure.

    What is the frequency of your injections?

    Do you know what your Folate level is? Folate is essential to process the B12.

    Do you know the cause of your B12 deficiency? Can you "see" yourself in the list below?

    On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

    Who’s at greatest risk for B12 Deficiency?

    "Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Women with a history of infertility or multiple miscarriages.

    Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

    I take it you are in America and am being given cyanocobalamin. I've been on injections of that for P.A. for 45 years and I'm still "clivealive" at 75

    "Almost 40% of the U.S. population is deficient in vitamin B12" according to a recent study from Tufts University in Boston and a vast majority of them are completely unaware.

    I am not a medically qualified person but if you can answer some of my questions there are those on here who will be able to give you good advice.

    I wish you well for the future and a good recovery.

  • Hello there!

    I had some of the these symptoms for a year, I went to the Emergency Room three times in a month, every time they told me its because of depression or stress and there is absolutely nothing wrong with me.

    Now I feel like it caused a major damaged to my body which worries me the most.

    For a month I got the injections weekly, starting this month i will be getting it every other week. The injection makes me feel really bad for some reason.

    I greatly appreciate your comment and I wish you the best as well!

  • Hi VH1993,

    I am so sorry to hear of your troubles! It does get better but many people experience worsening of symptoms before improvement. It appears from my reading posts on this forum, that that the lower the B12 level, the harder those first injections are.

    What was your b12 serum level before injections? Also, has your folate level been checked? It's important to have enough folate as the two work together. And a good quality b complex as well.

    And you could ask your doctor to give you more loading injections- one every other day- they might not do it as the protocol in the US seems to be once a week and then monthly. I am in the US also and I see a naturopathic doctor for my b12 issues, as my AMA doctor would not approve more than one injection a month. The naturopath prescribes it, my husband injects me and I've been doing every other day for months as I had neurological symptoms. Which are resolving and I think now I can do them a little less often. As you have neuro symptoms too, it might be worth finding a naturopath who understands B12. Not all do. But it's totally worth it. You can call around and ask about their treatment of patients with B12 deficiency. Also, many naturopaths use methylcobalamin rather than Cyanocobalamin, which might work better for you. Everyone is so different when it comes to which form works the best for them. It's a very individual thing. I found that the methyl worked so much better than the Cyano for me. But as I said, each person responds differently.

    Hang in there! The good news it's you are being treated now and it will get better.:-) Also, everyone on this forum understands what you are going through as we have all had our issues with low B12. Read through some of the older threads and you will see that there are folks who got worse before they got better.

    Wishing you the very best and please let us know how you are doing and if you have other questions.

    You are not alone!!! :-)

  • Hope you don't mind my going off piste, VH, or that you don't mind my asking, ndodge, but what were your neurological symptoms? I'm interested because I only realised I had neurological symptoms after getting to grips with B12 deficiency about three months ago, and they were so subtle that for all these years, i paid no attention to them. It was only when I began to find them really intrusive - like tingling fingers and desperate word-finding problems that i started to put two and two together. No blood tests, and my B12 was 300 and something, so never diagnosed officially.

  • Hi Schenks,

    I don't mind at all! I feel like my symptoms started many years ago and then snowballed as my B12 level dropped to 290- the grey zone. I started with dizzy spells in 2001 and then tinnitus in 2003. I was caregiver to my dying mother and I think the stress kicked me over to low B12. Autoimmune disorders run in my family and I am certain that my mom had PA, looking back.

    I have another autoimmune condition, uveitis, inflammation in the eye, which I have had since I was 15. My daughter has type 1.5 diabetes, meaning she has to take insulin now but did not present with symptoms until she was in her 30's! It is autoimmune, too. Diabetes does not run in the family-either her fathers or mine.

    So, dizzy spells, tinnitus, and then in 2010, I started having terrible gastrointestinal issues which the GP said was IBS but I think it was gastric atrophy from PA- I need to get tested for PA.

    Then I had a weird thing happen- whenever I bent over to do anything for more than 30 seconds, my right pupil would dilate- not the left one- and I would feel wonky and out of balance and rather flu-ish. I would also feel out of balance at other times and would have to hold onto furniture or walls to walk.

    Other symptoms:

    Horrible fatigue and weakness

    Sore tongue

    mouth ulcers

    numbness in hands and arms the attendant pins and needles feeling.

    "Listing" to the side when I walked. Thought this was due to meniscus removal in knee, but when I started B12 this stopped.

    I was also iron deficient

    Burning feeling in toes

    The yawns- noticed most people call this the sighs but I yawn instead.

    Breathlessness

    weak, brittle nails when I've always had really strong nails.

    Thinning hair

    Ocular migraines

    Dropping things

    Not sleeping well or sleeping 10-11 hours and then having to take a 3-4 hour "nap" everyday.

    Some brain fog- like the time I went grocery shopping , came home and forgot to put perishables in fridge!

    Hmm I think this about covers it.

    The good news is I asked my GP to test my B12 which came back 290 and he agreed to once a month cyano shots which I did for a year but it did not help with my symptoms. At all.

    He wouldn't allow more frequent injections so I took the bull by the horns and went to a naturopathic doctor , who totally understands about B12. She thinks I have PA and wants me to get tested.

    She prescribes methyl which totally works for me and lets me set my own injection schedule. I pick up the B12 at a compounding pharmacy and my husband injects me (I am so lucky! -I am not as brave as you folks who inject yourselves but I would definitely get over that if I had to :) ) For the last couple of months I have been injecting 800mcgs every other day,with sublinguals in between.

    While the tinnitus has gotten better, it is not gone and I think there might be permanent damage there. But all my other symptoms go away with shots. I feel saturated now and am going to (this week) cut back to 2 x a week and see how that goes!

    Whew! That's my long story, Schenks, and I realized that it is probably a good idea to have listed out my symptoms to print out for a hard copy. So thanks for inspiring me! :) Hope this is helpful to you.

    Take good care xx

  • Thank you so much for your respond!

    I will definitely ask my doctor to get Methylcobalamin instead of Cyanocobalamin thanks for mentioning that.

    My b12 level was 280 pg/mL, and the doctor had no comment about my neurological symptoms. My doctor suggested to get the injections every other week but i decided to get it weekly for a month, and now every other week.

    I definitely feel better now that I know there are others who understand me. I will be patient until I get better.

    how long have you been getting the injections for?

    Wishing you the best !

  • You are very welcome VH1993! I'm assuming you meant to reply to me b/c of the mention of methylcobalamin. It really worked for me so you can give it a try. Other people on this forum, clivealive, for example, have been getting Cyano shots for 45 years and that works great for him. But as I say, everyone responds differently. Hydroxocobalamin is what is in used U.K. to good effect and I believe a U.S. compounding pharmacy can make that up also. That's another you can try, if you get an Rx from your doc or maybe he/she can order it.

    But yeah, try the Methyl and see if that helps. And more frequent injections! I received Cyano monthly for a year with no relief in symptoms.

    I have been self injecting methyl for about a year now. My symptoms resolved right away. At first only every 3 weeks but symptoms would return so I kept doing then closer and closer and so for the last 2 or 3 months, every other day. Now I am trying to space them out a bit. Like twice a week. Just started this week. And my level was 290 when I started injecting.

    I posted a reply to Schenks a few posts above, and you can see my symptoms, all of which I have had for a long time and now are gone! Except for the tinnitus (wooshing, ringing in ears) but I've had that for 13 years.

    I'm not a doctor or any kind of medical person, but since you have had your symptoms for such a short time, I bet with more frequent shots they will all resolve.

    Be sure to have your folate levels checked! Also any good quality b complex. I use a food based B complex made by Garden of Life. Vitamin Code raw b complex is the name of it. It is made from food. It does not make me nauseous like other b complexes.

    Best wishes and I would love to hear how you get on! Please keep us posted. :-) xx

  • Sorry, might not have made that clear - bridge, what were your neuro symptoms?

  • I have severe brain fog, which is very scary. I have hard time reading, I can't concentrating. I get extremely dizzy every time I go out. I have blurry vision and everything seems to be darker.

  • That's so frightening. The brain fog that I had so badly for years has just begun to lessen it's grip, four weeks in to the B12 injections. It might take a little longer for you if you're only having them once a week.

    I hadn't read a book for I don't know how long, but it's just beginning to lift. Try not to despair. Keep posting - let us support you.

    Love and healing to you.

    x

  • There's no need to have the worry mentioned at the end of your mail - how can you act on it? It is what it is and stress and runaway thoughts make it much worse.

    let yourself get out of the physiological stress response which puts you in sympathetic nervous system dominance - pat a dog, as the man suggested or a cat, apparently there are now cat cafes where you can stroke a cat whilst drinking tea? en.wikipedia.org/wiki/Cat_c...

    good advice here, I'll leave them to it and wish you well. This is good life experience and it will stay with you, I hope in your caring career :)

  • hi,

    I try my best to be positive about it, I try to do yoga and meditate which makes me feel little better.

    Stressing about it definitely makes it even worse for me to recover, I will try my best to have a positive attitude about it.

    Thanks for your comment, best wishes!

  • Doesn't have to be 'yello smiley face' positively positive but rather, realistic?

    Like the AA folk say I'm told, be aware of what you can change and don't fret over what you have less control over.

    Save that precious time for sleeping, resting, relaxing, reading a good book having a relaxed meal with friends...

    Do you have a park near you? just sitting on a bench and noticing what's going on around you is incredibly soothing (depending on time of day and flavour of park!)

    As i think i saw someone else had written - we took a long time to get into this state it's not going to get better overnight. Being kind to ourselves is where recovery starts.

    Forget about accessing IM or SC. if your ludicrously sensitive and complex immune system (as I'm sure you know) is not in a good place you may aswell be mainlining the good stuff!

    Go for a walk and breathe, we're more than just wet machines!

  • I've seen a number of people on the forum mention that they are actually wiped out for about 24 hours after a B12 shot, so I don't think you are alone in that - though it isn't the reaction I personally have. For some it improves as they recover from being deficient but I think other finds it is a regular thing. Suggest you see how it goes for now.

    Guess you are in the US - where they use cyano and loading regime is different from the UK - where it would by hydroxo 3x a week for 2 weeks (or until symptoms stop if neuro involvement).

    B12 is a very personal thing - one would be lower amounts more frequently as that seems to help some people.

  • Hey,

    Im glad to hear the injections are helping you.

    yes I am in the US, starting this month I will be getting the injections every other week, hopefully it will start helping me more.

    Best wishes!

  • Hello VH1993, I'm sorry to hear about your current situation. I was diagnosed with Pernicious Anemia (PA) about a year ago. I'm also in the US and a mom of a pre-med student. I know that your coursework can be absolutely exhausting and stressful even if you don't have a B12 deficiency! You might want to ask your doctor about getting a prescription for Eligen B12 (cyanocobalamin) which is a pill that the body can absorb and process even if you have PA. This pill is taken once a day. It has made a world of difference for me although I still get the injection once a month also. I am also Vit D deficient and I take a multivitamin every day. Let me know if you need any more info or have any questions. You are definitely not alone. God bless you!

  • Hey there,

    Having b12 deficiency symptoms and raising a family could be extremely hard. I hope you are doing better now.

    I will definitely ask my doctor about b12 pills thanks for mentioning it.

    I feel like I could be Vitamin D deficient as well, I have been drinking milk for 2 weeks now hoping it can make me feel better.

    Also, good luck to your daughter/son in pursing their career.

    Best wishes!

  • Thank you, I am feeling much better now than I was a year ago. I would suggest that you have your doctor run a Vitamin D test also next time you get bloodwork done. Thank you for the good wishes and please keep us updated on your progress.

  • Eligen may work for some people but it certainly doesn't work for everyone. It is actually working by providing a very high dose of B12 in the hope that enough will then be absorbed through passive absorption outside the ileum.

    To be honest I'd expect sublinguals to work better but B12 is a very individual thing.

    Glad that the tablet works for you.

    Other options include a nasal spray. When the CDC had a microsite that I could find on B12 it recommended the use of nasal spray for patients who had problems with injections. This works by absorption through membranes in the nasal cavities and can be very efficient.

  • I am so sorry you're going through this. I don't have any advice for you since I'm still early on in the process of getting better myself, but I do want to let you know you're not alone. My symptoms are not as severe as yours, but I have felt like you emotionally -- like no one understands what I'm going through and fear that I'll never get better. This forum has helped a TON to know I'm not alone and my symptoms are shared by others. I live in the U.S. so my loading doses are different (1000 mcg injections every two weeks for now) but I can tell you that a few days before my injection I feel VERY low - no energy, depressed, and the world just looks darker (like, visually, it's like I don't see as much light - weird). The day after my shot is usually the worst, but then I see a slight improvement for a few days after. It's a slow process, but I do think I'm moving forward. I'm sure you will, too. Stay on top of your doctors and bring a list of things for them to do/test. It's difficult to be your own advocate when you feel so terrible, so if you can bring someone with you, that's even better. I wish you the best of luck. Please hang in there!

  • Hey there,

    yes feeling emotionally exhausted and not having hope is the worst. Thanks for sharing about your recovery journey. I feel the same, every time I get the injections I feel awful for a day and slowly it gets better.

    I definitely don't feel alone now and I hope you get well soon, best wishes! :)

  • I got worse before I got better. .. hang in there honey ... you will start to get better eventually it just takes some time x

  • Catherinejordan can I ask you what you felt got worse before it got better and how long it took for you to recover? I'm asking because I'm experiences getting worse before - hopefully getting better

  • I couldn't remember simple tasks .... foggy head which was scarey ... terrible leg pains ... burning feet ... headache. ..sore tongue... dry mouth ... dizzy bumping into filing cabinets. . snappy temper .. fingers ached ... sleep poor and probably more but I can't remember.

    I started to feel better after loading doses but I can't wait 12 weeks I self inject weekly or all my symptoms start to return x

  • thank you so much, Im glad you got better!

    I will try to be hopeful and patient!

  • Hi again VH1993,

    I am writing again to ask specifically about your eyes. Did your blurriness and darkness of vision start before the cyano injections? Have they gotten worse or better with the B12 treatment? Have you had your eyes checked by an ophthalmologist?

    I have had an auto immune eye disease since I was fifteen- not related to B12 deficiency, however I am sensitive to eye issues- mine and other people's.

    The reason I am asking is because there is an eye condition called Lebers disease in which using Cyanocobalamin is contraindicated. This is most likely not your issue but its better to be safe than sorry.

    I would definitely switch to Methylcobalamin and talk to your doctor about your eyes and go to an ophthalmologist to get them checked out. Its not a bad idea to get any eye changes checked by an eye doctor!

    I certainly don't mean to freak you out- its just something I am aware of and would be morally remiss if I didn't mention it to you. As I said , this is probably not your issue but I do want you to be aware of it.

    all my best,

    nancy

    XXX

  • Hey Nancy!

    Thank you so much for mentioning this, I have seen a optometrist but she wasn't sure why I see blurry even with my contacts. I have decided to see a ophthalmologist instead and I will definitely mention about this.

    My doctor believes that the darkness is from depression and prescribed me antidepressant.

    The b12 seems not to be helping me much but I remember having this darkness vision before the injections as well.

    Wishing you all the best as well!

  • Thanks for the well wishes, VH1993, & your quick reply. :-)

    So glad you will see an ophthalmologist as our eyes are so precious!

    I feel better that the darkness did not start after injections and also that you will get a more in depth eye check.

    Take very good care of yourself and let me know how it goes!

    xx

    nancy

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