I've been having B12 deficiency symptoms since last year, but never took it seriously until I fainted in a restaurant.
Went to the doctor and turned out that my levels were 80 - I guess lower than this I could have been dead.
I started taking pills twice a day (each 1000ug) and shots 3 times a week. After the first shot I felt alive again. After the second, I felt ok. After the third, I didn't feel well at all and after the forth I felt miserable again.
I have the worst mental state ever, I feel like I am about to have a panic attack every second and I feel like crying, breath heavy and stay with my phone close in case I need to call an ambulance.
I am alone and I am afraid that I die every evening when the symptoms are worse.
Could you please tell me how long until I start to feel better?
I am really sick of being sick.
I also got Iron pills, 3-4 days a month.
Please please, advise. I am so scared from how I feel.
Best regards,
Raluca
Written by
Lucalou
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Just give it a bit of time. I started from roughly the same place as you (B12 = 85 pmol) and was so pleased when I got diagnosed as I thought I would feel great again with a few jabs.
Like you, however, the initial loading doses made me feel worse. After 5 jabs I was wondering if they were worth it. With the 6th I still felt rough on the day but was much better over that weekend. The next three were roughly the same - rough for a few hours but an obvious improvement.
I decided to self-inject rather than wait 2 months for my next official jab when I started feeling terrible again. Now I'm on 1000ug IM every week and a 1200ug patch every day. I still feel rough for several hours after my weekly jab but I'm slowly improving.
I started my B12 medication in July and, compared to then, I feel a lot better. Not like I was before this hit me, but a lot better than I felt in June, when I couldn't even get the energy to walk round the supermarket to do my shopping.
Even though I am single, I'm very lucky to have some very good friends that are very supportive. And I've found the support on this forum to be invaluable.
It really helps to be able to talk about how I feel and to have others that understand. K
The B12 injections will help, but it takes time. Just take care of you. Eat well and rest....meditate for the anxiety and worry. It helped me a lot. I was in bed for up to 22 hours per day at my weakest.
dear God, this is very bad ljmulledy. I feel tired, depressed and unmotivated all the time... and the worst thing is that I forget things, I cannot concentrate and I feel like I have ADD. I wonder if this will ever go away.
My condition is managed. I feel 100% better, but i am different. I feel like there was a pre-sick me and a post sick me. I finally have energy to do things motivation waxes and wans. I'll take it. It's better than wishing i wouldnt wake up. Hang in there! It definitely gets better.
I am very happy for you and wish you all the best.
I guess it is normal to be a bit traumatized (or irreversibly changed) after going through something like this. I never thought I can manage such an ongoing sickness feeling, and I think not so many people in my age have experienced something like this. It is so tough to hang on. I am 31, by the way.
I know it changes and leaves scars in us, but it also makes us see how beautiful life is. At the moment I am in a black hole, but I hope to see beauty again. Motivation comes from passion, and we should always do more of what we love, especially when motivation slips away.
This is me now I feel like a horrible mom as I’m just laying around all the time now. I have always been a go getter with energy to spare so this is killing me
Take a deep breath, calm down, sit and watch tv, anything to take your mind off of it.
The reason you feel so bad at the moment is probably your body trying to adjust to something it has been without for quite a while, and at the moment if you think about it the injections have sort of overloaded your system.
Lots of us have gone through a period of where we felt good then all of a sudden a deep dip, others on this site will tell you its the body adjusting, it should calm down. For many there is a distinct time of feeling worse before we feel better.
Try not to be frightened by it but if you are worried go to your gp for reassurance or a review of how you are being treated.
Lucalou, what other interventions has the GP ordered? It seems to me you need to find out the underlying cause of the deficiency. Do you have a H. Pylori bacteria infection or is it caused by a lack of Intrinsic Factor? Did you have an endoscopy to confirm the diagnosis, whatever that was?
Good luck. Try to ask the GP for more information. I know it is hard, especially when you are having some stress and depression as a result of the deficiency. It makes me not think straight which makes it harder to communicate with the medical fraternity.
A really helpful thing you could do is begin a little journal listing the date, what you have eaten, supplements and your mental and physical state. This will mean much more for a GP than you saying you are having a stress attack. I find I am more likely to note my physical symptoms as they are so odd; like closing the car door on my foot or falling up the step into my pantry. So, just write whatever you think is odd and that will help a lot.
Do you have a friend or neighbour who you could enlist to have a chat or text each evening before you go off to bed?? Someone who can be in regular touch? That will make you feel safe. You will be surprised to find that there will be many people who will be happy to help.. keep asking until you find the right person.
You are very right, the reason seems to be indeed connected to my stomach. I also stopped eating meat a year ago.. so maybe this also accelerated the process. I felt worse and worse until i was like a yellow leaf falling from a tree..
The doctor said to wait a month until I get my B12 back up, and then I will have an endoscopy.
I will definitely do it, as I sometimes have gastritis symptoms.
What you said made me thinking > to have a review of my treatment.
So I read a lot last night and found out that there are 3 types of B12, as follows >>>
1. (BAD) Cyanocobalamin - The most commonly available form of vitamin B-12 on the market, a cheap synthetic form that's actually bound to a cyanide molecule (yes, cyanide, the poison).
2. (GOOD) Hydroxycobalamine - Compared to cyanocobalamin, hydroxocobalamin has a higher affinity to plasma protein and has a longer half life. This property helps retain hydroxocobalamin-protein complex in the blood stream longer; Hydroxocobalamin is recommended worldwide by the World Health Organization (WHO) as a drug of choice for the treatment of vitamin B12 deficiency
3. (THE BEST) The proper form of vitamin B-12 to supplement is called methylcobalamin. This is the form that exists in nature, and it is pre-methylated, meaning it's ready for your biochemistry to put to immediate use. Methylcobalamin has several key advantages over cyanocobalamin:
* Increased absorption
* Better retention in tissues
* Contains no toxic cyanide
* Supports production of SAMe
As explained by Ed Sharpe:
"The coenzyme form of vitamin B12 is known as methylcobalamin or methyl B12. It's the only form of vitamin B12 which can directly participate in homocysteine metabolism. In addition, converting homocysteine to methionine via methyl B12 generates an increased supply of SAMe (S-adenosyl methionine), the body's most important methyl donor."
I investigated my injections and pills, and they were the worst, Cyanocobalamin.
I live in Germany and Methylcobalamine does not exist as injection, so I went and asked for the second best option, Hydroxycobalamine.
The doctor was bothered, but I made him give me this. So I got a shot.
I didn't even feel the injection, really... compared to Cyanocobalamin, which hurt like someone was injecting liquid metal in my flesh. Obviously, it felt toxic.
Now I feel a bit better and very hungry.
Who knows, maybe what I was taking was toxic for my body...
In the uk hydroxo is the injection they will give you. Cyan is mostly bought over the counter- i have used this to give me a bit of a boost. Lots of posters on here will say they want, or inject methyl as it works the best for them. If you go down the self inject route as many do i believe you can get it from amazon- search on this site re methyl.
I hope that you feel better soon and this time the hydroxo does the job. Good luck.
Thank you for the tip. I have the feeling that the people at the doctor's office, have intentionally switched the injections, as the doctor was very pissed that I asked for hydroxo instead of cyano.
I went today, got the shot and I am suspicious. I feel worse and very anxious, like after cyano.
You can get Methylcobalamin in Germany----from ARNIKA apotheke in Munich. You can E-mail them or 'phone them with your order. Google them for information! All the best
You know it's very difficult to anwer that as there is no research done on it, and we are all different. I now alternate between Hydroxo and Methyl I feel very well on that. The only thing I'm left with is burning feet, but at least they are no longer numb. Personally I would stick to Methyl for a bit,and if things improve,alternate. That's what I did. It's trial and error really. Just have condfidence.
I found that my feet improved a lot on Methyl alone and then stayed at that level. I did start initially on Hydroxo alone because I didn't know about Methyl. That was for about 6 months. Then I had Methyl alone, certainly also for 6 months. Now I alternate. .. This hasn't anwered your question really has it? Just go ahead and start on Methyl is what I would say. It is supposed to be one step nearer absorption than Methyl, so that makes it easier for your body. You will soon start to feel better! All good wishes to you!
Yes, he cobalamin in CyanoCB is bound to a cyanide group. But that's no reason to be worried about it as the amounts involved are extremely small. Even if you're taking 5000ug of CyanoCB every day that would only produce About 75ug of cyanide. That's about the same amount of cyanide as you would find in a small glass of prune juice.
Not sure if you had anaemia , large red cells as well. My B12 was 20 and anaemia at 8 haemaglobin. Also low folate. I had angina, paranoia and fell around and ached. I still have balance problems and a wierd buzzing in my nerves from time to time, but I have improved, its been a year. Had most improvement after about 3 ; 6 months. I think it was too low for complete recovery. I had mild stomach atrophy and didnt have dairy products. Milk helps I think . I hope you get better soon. It is a horrible problem, on the internet other people with very low levels fared much worse than me, I think I must be strong. I think you must be too. I do have many more muscle pains as well as pre existing arthritis, but I am lucky my doctor sent me to angina clinic where the problem was found. You could ask for referral to a haematologist x
Please feel free to contact me. I feel you should tell your GP you were supplementing. The injections worked quite fast. Neuro symptoms took longer. I had other things wrong too.
Thank you, my GP knows but because my level of B12 was 1500 he would do it and since October new symptoms to me it’s Neuro symptoms but to him it’s anxiety, depression and a mental health issue.
Did those other things clear up after the injections?
I have to be off the B12 spray for four months for a true reading and it’s ok been a few days and I know the spray wouldn’t help the neurological issues but energy yes.
I just feel or am mad and he thinks so too.
I also have ringing in my head I think it’s tinnitus that started in October the same time as the vision issues but I don’t want to see the doctor because of what he thinks of me.
I am seeing the optician tomorrow and booked a boots hearing test tomorrow as well.
Thank you so much for your message! You really had 20 the level of B2?? Oh dear, your B12 was terribly low, thank God you found it out - it could have been worse.
I will ask for an appointment to a haematologist, definitely.
I couldn't remember what someone had said to me or asked me to do before I left the room. I was carrying a note pad around with me to write things down. Brain fog was terrible. I feel 90% better after jab, but do self inject every 10 days. I'm not going back to how I was just because of some dumb arse guidelines. Xx
Sorry just reading posts from what you sent three years ago as I now have similar symptoms but because I was supplementing up till a few days with a B12 spray my B12 was 1500. But having severe neurological and cognitive issues, weepy, depression. I can’t get injections.
Julie87. Replying to posts that are old rarely elicits a response and furthermore, your reply will not be seen by anyone else if the forum.
It's always best to put up a new post of your own rather than asking questions in old posts. Thwt way it will be seen by the whole forum and people will be able to respond to you.
You can start a new post by clicking the blue 'write' tab at the top right-hand side of the page 😉.
My PA went untreated for several years. I was fatiqued, depressed, hallucinating, panic, anxiety. I got the shots weekly, then monthly and it took about 6 months before i started to feel like my pre PA energy levels. It's taken over a year. I have permanent personality changes but i am aluve and gratefully so. I self inject weekly now because i hypermetabolize. Life is great but its different than before. Hang in there...it takes time. Treat youself well. Exercise if you can and stay in bed if your body tell you to.
Also remember that is is very important to have plentyof FOLATE(Vitamin B9) It goes hand in hand with B12.Better still take a Vitamin B complex. Yes I had gastric problems too. A gastroenterologist told me that Pernicious Anaemia patients should assume that they have little or no stomach acid. I take probiotics which help a lot and drink a glass of raw organic cider vinegar with "mother" diluted with water and a little honey before a meal. Raw organic sauerkraut is also wonderful for the tummy(has probiotics) and other fermented vegetables. In extreme cases of gastric problems, capsules of hydrochloric acid with pepsin before meals can help. YOU ARE NOT ALONE NOW YOU HAVE FOUND THIS FORUM! All the very best.
Wedgewood, thank you so much for your words and tips. I love sauerkraut and I will definitely try it.
Regarding the Folate (B9), I have understood that it increases the neurological damage if taken together with B12 in a deficiency. I started taking it, but once I found this, I am not taking it anymore.
My attention and concentration are so low at the moment and I am afraid that my brain is gonna be more damaged.
One shouldn't take folic acid while B12 levels are low. Once you've been supplementing with B12 for a while then it's OK to start on folate supplements.
Lucalou, I have been thinking about you and hoping you are feeling calmer. I think I feel better if I have a protein meal early in the day - I have oat porridge for breakfast and this has no protein but an egg etc just after seems to help with that hollow feeling. This may be worth consideration if low blood sugar is contributing to your panic attacks. I have just purchased a needleLESS injection kit and the methylated B12 so I was most interested in your summary of the types available. Good luck.
Sorry to hear that you have been suffering - hope you are feeling a bit better today.
Did you have any anaemia when you started supplementation - if so then you need to keep an eye on your potassium levels as these can drop significantly - causing a deficiency which is very unpleasant and potentially life-threatening as well.
You also need to keep an eye on your folate levels as they can also drop when you start supplementation and the body needs folate to absorb and process B12 - mentioned by others below.
People respond very differently to different formats of B12 - whilst it is true that some people find methylcobalamin works much better for them than hydroxo that isn't always the case. I find that methylcobalamin really does nothing for my neuropsychiatric problems - depression and anxiety - but hydroxo works very well if I keep levels high - for me that seems to be around 2mg of hydroxo a day ... most of which I get from nasal spray rather than injection. I also use methyl and adenosyl - which work very well for the neuropathy - giving me more feeling and movement in my left foot which has been a particular problem.
Some people even have problems with methylcobalamin ... and with artificial methylated forms of folate - don't know for sure but this seems to be down to a set of gene sequences that affect the bodies ability to methylate vitamins - mainly B9 and B6 - but the exact effects depends on which genetic variant is involved. There is a lot of hype about methyl but from what I have seen of others on here it is something that I would approach with a bit of caution - not saying don't try it at all - but just do it carefully.
In Germany you can get injectable B12 over the counter - certainly true for hydroxocobalamin. The normal maintenance regime in Germany is once every month - though this won't necessarily be enough for you - it certainly isn't enough for me.
In the 15 months after I was diagnosed I would say that my problems actually got worse - particularly the anxiety and depression - though I was probably coping with them a lot better than I had done for decades using meditation - which I note someone also mentioned.
I did notice that I had more energy after my 3rd loading dose but it didn't really last that long. I was told that I had low B12 after I ended up in hospital with a broken ankle after a fall but given no idea what it meant and it took me that 15 months to figure out what it meant (GP well intentioned but basically a chocolate tea-pot) and that was the point at which I started treating myself. I went from struggling to walk to being quite happy at the top of a ladder pruning a grape vine in the space of a month and a few months later I realised that the anxiety and depression that had plagued me for decades had gone. It does take time, it does take the right doses, and it does take the right balance of other vitamins but things will get better. There may be odd aches and pains on the way - and the immune system can go into overdrive - week after I started supplementing for myself I had a stinking streamer of a cold but actually seemed quite positive as my immune system hadn't been up to runny nose for several years.
Don't know if this will help you with the anxiety - but it did help me so sharing it. The bit of the brain that deals with fear (and anxiety is related to fear) is very primitive and works by sending you images of the consequence of the fear. This is a very good tactic if you are living in a cave and need to run away from a bear but not very good for things like stress - where it will often send you a thought/image of death ... which ups the anxiety and so more images of the same fast and furious in a vicious spiral. That was where I was.
My way out was realising that actually the problem wasn't the thoughts but the reaction to them that just made things worse. I realised that my response was a bit like reacting to unwelcome callers at the door by hiding behind the sofa until they went away when really I just needed to go to the door and tell them that I wasn't interested, so I changed tactics. Rather than reacting to the thoughts but wondering where they were coming from I started 'thanking' my brain for warning me that I was a bit stressed and would go away and do something that helped me relax instead. I thought it would take months to retrain the reaction but actually it took a couple of weeks.
I do still get the occasional 'dark thought' (but certainly not to the extent that I would when my levels of B12 were not right) if things are very stressful but the response now is so much different ...
WOW, great piece of advice, Gambit62! I am really impressed by your experience in calming the anxiety. And I will try to do it too.
However, I am also anxious because I have not found a doctor that would give me a full and REAL overview of my state. He knows less about B12 than me, apparently and last time I told him that I feel very sick from Cyanocobalamin, that I feel like dying on the street. And he responded to me "THEN DIE!" and was very unfriendly.
I would sue him if I had recorded this conversation or publish it online. This is not normal.
I am afraid that I don't know what to do, where to go, how the process is, I don't know much.. and I see how my memory and attention are going lower and lower, even with treatment.
If someone professional would give me a good overview, I would trust them. But lack of trust, makes me even more desperate. However, I have found many people here to give me trust - with their experience, advices and warmth.
As I wrote above already, today I had the feeling that the people at the doctor's office, have intentionally switched the injections, as the doctor was very pissed that I asked for hydroxo instead of cyano.
I went today, got the shot and I feel worse and very anxious, like after cyano.
On Friday I switched to hydroxo from cyano, got one shot and I felt better. Today they told me they made me hydroxo, but God knows what they did, I feel exactly like after cyano and on the verge of having a panic attack every second.
Tomorrow I will go and ask them to show me my b12 serum.
I bought it and left it there - stupid me. I can't even trust my doctor, what a bunch of incompetents!
I think the loop you are caught up in is the one where you never find a doctor who knows about B12 - which is a real possibility. I gave up on my GP - nice caring chap so one up on yours - when he tried to push anti-depressants and gave me a standard questionnaire for depression which led me to realise someone with B12D was going to score high whether or not they had low mood ... so went away and started treating myself - something I really don't regret - I tend to use a nasal spray as that works very well for me. So, if your brain is telling you that your doctor is useless that's okay. You do have other options - B12 isn't toxic - some people have uncomfortable reactions to some forms of B12 and some don't work - but the fact that it isn't toxic and you can't overdose gives you lots of room to experiment.
Hi Gambit. That is such helpful advise about managing anxiety. I lean towards being anxious, but since having b12 injections my anxiety has gone through the roof. I've been managing it with mindful meditation, but I can't meditate all day
Did you work it out for yourself, or is there a book or cd you could point me in the direction of?
can recommend 'mindfulness - finding peace in a frantic world' by Mark Williams and Danny Penmann - has some similar stuff in it - including a meditation on dealing with painful thoughts.
Pernicious Anaemia/B12 Deficiency - Support Group . is the right one, that,s not the. The admins are Pat Kornic and Andrea McArther and a few others.. I couldn't copy and paste the page for you or I would have..LMK if you have trouble getting there
Lucalou just curious as it's been some months and you seem to be on methylcobalamin, are you feeling any better mood and energy wise, I've recently started taking 5000mcg of methylcobalamin sublingual tablets as i have neurological symptoms and don't notice much of a difference yet (been on cyanocobalamin tablets 50mcg twice a day for 2 months before i switched which did nothing) i know for myself it's still early days but I'd like to hear from someone who was in a similar boat to myself when it comes to mental symptoms
My b12 levels are 21.I feel im going to die.Got strength by knowing you are fine,what was the exact dosage that you took.My doctor gave me 1500 mcg of mecobalamin per day,it doesnt helps.
Hi, I am so sorry that you feel bad - I assure you that you'll recover your full strength. Hang in there! It is important to know what form is the mecobalamin? Sublingual pills? Injection? Regular tablets to swallow?
You need injections, that is the fastest way to refill your B12 levels. But do let me know what form it is.
Okay, it sounds good - it's quite a generous dosage. Methylcobalamin is the most natural form of B12. Rest and take it easy. You will feel better, I promise.
Thanks a lot, Rajgam! The conclusion is that in most cases, people that suffer from low B12 will recover 100%. The hardest symptom to handle is anxiety and panic attacks, but that will pass too once the B12 levels are refilled. Just hang in there, be strong and positive.
Hi. is 2000 mcg a day good to take? I know I am low b12 but my doctor says i am not. The bloodwork does not show it but ive heard that that can happen. And how long you take b12 before feeling good. I get tingles in my hands if i dont take it for 1 day but i do feel the b12 gives me brain fog sometimes. Thanks
Lucalou, you have brought the sun into my day. I had a sleepless night, on my fourth week videos every other day IM and second week oral methyl 5000mcg. But cannot sleep because of anxiety episodes, tingling, numbness. Wondering if it will ever go away. You give me hope. One of the greatest gifts.
Hi! Don't worry, you will be healthy and strong again! B12 levels of 158 is still ok, there are people out there who have half or even less.
Very good that you started with Hydroxo, this is the B12 which will be deposited in the long run in your liver, now you are building up your B12 stock.
I overloaded as well, took 2000 Cyano every day for 4 weeks and also injections.
I am a skinny person and easily overdosed and felt even worse, my tingling and anxiety were way worse, so my symptoms increased.
Everywhere it's written that the body only uses what it needs, and eliminates the rest, therefore you can't really overdose on B12, however - trust me - I did and felt horrible until it went out of my system, then I took it easy. Now I get one 1500 Hydroxo shot a month and feel great.
I would advise you to take it easy, Hydroxo is really the best - slow but steady wins the race.
Meditate, watch a comedy movie, read, try to calm yourself down and, trust me, you will be fine soon!
And don't forget to eat a good steak (in case you are not vegetarian) and healthy food!
Wish you lots of luck. Fingers crossed for you to feel better soon!
I’ve read through your post and it’s great to hear that you’ve improved so much.
I’m nervous because I was recently diagnosed about a month ago with PA and I’ve been taking 2000 mcg of b12 daily in pill form and I’ve had three shots but because my numbers are increasing, I started at 150 and my last test says I’m at 371 my doc wants me to stop taking the pills and get a shot of 1ml of b-12 a month.
My question is, is there a withdrawal period where you feel worse after stopping the pills and just getting a monthly shot?
I’ve had more good days than bad days after taking both supplements so I’m afraid a shot a month will restary my progress so far.
Please let me know what you think. Thank you in advance for your time.
Hi, Lucalou !
I am male, 58 years, I was diagnosed with peripheral polyneuropathy because of lack of B12-level 50 pg-ml at the beginning of 2017. I could walk very badly, I had foot needles and great tiredness. I went to 3 hospitals and the result was that I have autoimmune atrophic gastritis based on a B12 level of 50. Till now I self inject about 200 times -Cyano, Hydroxo and Methyl and I feel a little better. My level now Is more than 2000. Do you think I will recover 100 % or I will stay permanently disabled. Thank you very much in advance. Wish you all the best.
Note: the reply that elicited this response has been deleted. Julie87 - leaving this response, for your information, because you will have received a copy of the reply via email...
Celkil. Here's what Science direct day about 'Dr' Amy Yaskos' protocol (be aware, she's not a medical doctor either:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I feel like a horrible mom as I’m just laying around all the time now. I have always been a go getter with energy to spare so this is killing me 
B12 deficiency
B12 Deficiency and B1 thiamine deficiency?
