I made a post a while ago about reaction to B12. I still keep reacting badly. I dont understand what is happening and How.I keep getting restless and have bad sleep. Also get bad brain fog, concentration and anhedonia.
The new symtom is sexual dysfunction.I had taken small doses B12 because of deficiency, and decided to try a larger dose again. Took it in the evening and woke up with numbness in my genitals and a shrunk clitoris (sorry NSFW).
The numbness has spread to my whole skin and body, and everything is less sensitive. Cant orgasm.
I also developed extreme anhedonia. Cant Feel anything and my body seems dead.
My cognitive function has never been so bad. I am confused most of the time, have very little thougts and struggle to speak.
This time i also got anxiety and restlessness.It feels like someone evicted me from my body. I literally have no emotions and feelings in it. Cant even Feel tired when i work out. I have to physically tell myself to stop based on my muscle hurting because i literally Feel nothing in my bodyI am sorry, but How on earth can B12 cause anhedonia, reduced cognitive function and sexual dysfunction/body numbness.
Does it cause depletion of dopamine somehow? I Feel like there is no dopamine in my body.
How does it affect the brain? I dont know if methylation is the cause or what. Seems like some extreme dopamine deficiency almost.
My GP wants me to take 1000 mcg injections because my deficinecy is so bad. But i am sort of scared.
Could my symtoms just be a coincidence even though it has happened several times?
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Sorry you've been feeling all these worrying symptoms.
Be assured that recovery from B12 deficiency is counterintuitive. When you put in more B12, the symptoms get worse. And our brains logicially think that it's a threat and so stop putting that thing into our systems.
But vitmain deficiency recovery is not the same as taking a drug or chemical that changes our body's reaction to something.
Your body is most likely 'aching' for more B12 to be able to do what it needs to do. The loss of sensation and numbness is the body most likely coming back to life where the numbness was previously dormant and you didn't notice it.
It's either that or the body is using some of the B12 from that area to help you heal in another area.
Many people, including me, went through 'reversing out syndrome' where the symptoms get worse and new ones arrive as your body reverses through all the symptoms you had leading up to the major drop in your levels.
If you stop taking B12, you'll stay very unwell. But if you take lots of B12 you'll also feel very unwell, but you'll be healing. And it does take a very long time, a year or more.
Keep faith and try to get as much sleep and rest as you can. You will have to put your life on hold from any intense physical exercise or sexual activity. You can still do it! But you'll need to accept that it won't be the same for a while until you're better.
The most important thing you can do is to keep getting injections every day or every other day for a year or more.
" How on earth can B12 cause anhedonia, reduced cognitive function and sexual dysfunction/body numbness."
I'm not aware of B12 itself causing these symptoms but B12 deficiency can.
See symptoms lists below.
Some links I post may have details that could be upsetting.
I'm going to assume you are in UK.
Knowing which country you are in is helpful as it means people can post the most relevant info. Patterns of treatment can vary between countries and type of B12 used can vary.
I'm in UK so some info below may not be relevant if you're in another country.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If you have a PA (Pernicious Anaemia) diagnosis or suspect you have PA, worth joining and talking to PAS who can offer support and pass on useful info.
You do not need a confirmed diagnosis of PA to join PAS.
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
There is a helpline number that PAS members can ring.
Each Integrated Care Board (ICB)/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Local guidelines in England are subject to change this year as CCGs (Clinical Commissioning Groups) have been replaced this year by ICBs (Integrated Care Boards).
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or submit a FOI (Freedom of Information) request to ICB/Health board asking for a link to or a copy of local B12 deficiency guidelines.
Misconceptions (wrong ideas) about B12 deficiency
B12 deficiency is not always as well understood as it should be by health professionals.
Links below list some of the common wrong ideas health professionals have about B12 deficiency.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Many people on this forum including myself report that when treatment starts, symptoms get worse before they get better.
"Does it cause depletion of dopamine somehow? "
I don't think B12 itself can cause depletion of dopamine but B12 deficiency might.
I found research articles online that suggested B12 deficiency can affect levels of neuro transmitters including dopamine.
"My GP wants me to take 1000 mcg injections because my deficinecy is so bad. But i am sort of scared."
Is it the thought of injections or something else that is scaring you?
B12 deficiency requires prompt and adequate treatment or the risk of permanent neurological damage, including damage to spinal cord, is increased.
My symptoms only started to improve once I had injections and I count myself lucky to have avoided permanent dementia and permanent damage to my spinal cord. I had dementia symptoms and spinal symptoms when at my worst.
Please talk to your GP about being scared and I'm sure they will reassure you.
I have also had this happen to my genital area too-thought I was the only person in the world who had had this!-but mine was a side effect first to insulin and then when I tried empaflaglozin ,both times it was frightening and very painful,after stopping each medication the area returned back to nearly normal,still have a little pain and soreness three months after stopping empaflagozin,I have been SI-ing b12 for nearly four years now and cannot praise it enough,from filling an a4 sheet of paper both sides with a list of symptoms I am now down to a post-it notes worth, so could it be a medication?
yes,disappeared into my body,gp who examined me couldn't give me an explanation,it came back when I stopped using insulin ,but I was very shocked when it happened again when I tried empaflagozin,I've never heard of it happening before,don't understand why it would happen,but it has come back after stopping those medications ,I'm sure it has nothing to do with b12 as I was injecting two years before I started those meds and b12 has only been beneficial to me,I can find no info on the internet either about it,I hope you can find out the reason,I found it a horrible experience too
EDIT: I assumed from your post that you are taking methylcobalamin. Obviously disregard below if you are not. But then again you could take to another form regardless.
I have taken cyanocobalamin, hydroxy cobalamin, and methylcobalamin b12 shots. Some people feel no difference between the three. I do. I will never have methylcobalamin shots again. Can't even express how awful I felt on it. I did not even sleep an entire night right afterwards (always slept like a baby on cyanocobalamin). The agitation I feel on it is so strong that it extends to b12 pills & sprays. Just off in general.
Once I sourced a hydroxycobalamin spray, making sure that it was not a methyl product. I realized I felt so agitated - turned over the bottle and viola, it contained methylcobalamin as well.
There have many stories on here of people who are highly sensitive to methylcobalamin. So give another source a try simply to cross out that sensitivity as the issue.
I second what Litatamon said. I felt really awful when I tried methylcobalamin. Severe insomnia, anxiety, restlessness, headache, etc. When I stopped taking it the symptoms went away. I have cyanocobalamin shots every three weeks and have never had these problems.
Yes, Pickle500 is right. It gets worse before it gets better. I am 4 months into it and was unable to really walk for the first three months, everything hurt. Especially my lower abdomen, weak legs, plantar fasciitis, walking like I have MS. No control over my bladder or my legs, anxiety, restless legs, insomnia brain fog, can't concentrate, can't say the right words. Words don't just roll off tongue, and the list goes on depending on the person. Everything went haywire. It is starting to calm down now. Some things may not disappear altogether but sometimes they do. It can take months or even years, depending on how long you have had it.
How often are you getting B12? Do you know your B12 levels? If your Doc says your B12 is too low and that you need injections, you need to listen to them. Did he say you had no Intrinsic Factor? If so, you have PA. Are a vegetarian? Alcohol consumption can also be to blame, and Nsaid's are thought to cause this and more.
Injections are a piece of cake. Don't let it scare you. The consequences of not injecting are much worse than the injections. You sound young, if it goes untreated or not treated correctly, as you get older, these effects can become permanent and this leads to dementia, Alzheimer's, and bed ridden or wheelchair bound. Believe me, you do not want to ignore B12 deficiency. It is a serious illness and there is no cure, just maintenance. Most of us inject according to our symptoms, Not doctors orders. They are usually not enough. some can inject monthly, tri-monthly, every other day (EOD) or even daily like I do right now, or a bi-weekly.
Right now your body has been in dis-ease for a long time. It takes a minimum of 5 years for your body to use up all the B12 it stored in your liver. After that, if you aren't absorbing b12 from your foods, you will become deficient. Your body slowly gets used to and adjusts itself to feeling bad and it becomes a normal way of life. UNTIL you crash. Until B12 tells you it is not fooling around and you had better get some B12 in your body before it completely shuts down. And it does. The injections are painless, with tiny hair thin needles. You can let your doctor inject or you can choose to self inject (SI) and buy your own B12. I believe most of us, if not all, SI now because we need more B12 than the insurance or docs will prescribe. It is very empowering to take control over your own health. I suggest you read everything you can find. There is a very in-depth list of symptoms someone posted for me. I will find it and post it for you.
You can do this. there is a fearless woman inside you ready to fight for her health. You need to help yourself. You need to take control. Your first great step was finding this forum. Everyone here has been so supportive and helpful. You are not alone! Hugs
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