Hi, has anyone ever had experience of b12 deficiency symptoms after antipsychotic withdrawal/discontinuation, & more specifically Aripiprazole (Abilify)?
I am still awaiting b12 deficiency test results, but I wonder if discontinuation has resulted b12 deficiency symptoms & creating a false normal? Symptoms kicked in after about 8-12 weeks tapering down.
Thank you.
Hi Ian232,
I’m trying to look at your previous posts to get a better picture of what’s happening to you. Your symptoms are personal to you.
Everyone of us can a variety of symptoms. Then we decide to be really awkward and have other illnesses. Like thyroid disease in your case, coeliac disease in mine.
So, what are your specific symptoms ? Neuropsychiatric symptoms are seen in P.A./B12D. So, too with thyroid conditions.
I see you had an Intrinsic Factor test which was negative but it’s only 50 % reliable.
When they take our blood (serum test) and see how much B12 is in it, we have to fit a criteria. A value is set and if our levels are below that we can have injections.
There is much talk of the cut off values because the tests measure both active and inactive. That’s problem 1.
Now, problem 2, is that only the vitamin B12 in our blood is being measured not what is happening at cellular level ? So, you can good level but it’s not being used in the right place.
You see how complex it has become ?
Good, ferritin, iron, folate, vitamin D but most importantly how do you feel ?
Pins and needles, numbness, feelings of insects crawling under skin (formication), balance issues, fatigue, dizziness.
Tapering off medications can bring about withdrawal but at the same time illnesses should be investigated. Not your health being brushed aside and explained away because of a reduction in prescribed drugs.
That’s all I have got at the moment. Hope it is of some benefit.
Hi Narwhal10,
Thank you for your reply!
My main issues have been peripheral neuropathy, brain fog, memory problems, depression, & feeling generally unwell/run down.
I am going to try and see my doctor next week, & see if we can come up with a plan. I am hoping to get MMA test results by then.
Thanks again for your help and time! 🙂
It is a pleasure Ian232,
RoseFlowerDew, had said how important tapering off is.
Sorry to read about symptoms and please remember that depression (fatigue) is a symptom not a diagnosis. It can be very difficult to wash, and dress yourself due to sheer exhaustion. Pacing is key. Have a look at the 12 Spoons Theory on how to manage fatigue.
I am not that familiar with the dopamine metabolic pathway. Maybe, Technoid will be. Plus, FlipperTD can shed some light. Although, certain building blocks of proteins (amino acids) are required to make individual neurotransmitters (chemicals that work on nerves).
Please note that a vitamin is a portmanteau of vital amine. This is biochemistry and it has to do with nitrogen atoms. I won’t frazzle your brain.
Many of us take other vitamins because the B’s work together in a metabolic cycle. I did put a post up previously regarding this. Don’t get hung up on things, I have colour coordinated it.
healthunlocked.com/pasoc/po....
The RECIPE FOR POWER at cell level is 3 blue ones, 5 green, 6 pink, 5 orange, 2 purple and 1 red one = POWER.
Feel free to snapshot, take to appointment and ask for a homocysteine level as well. Please remember the term diagnostic overshadowing. It is a form of discrimination and means when a healthcare professional assumes that a patient's symptoms are due to a mental health condition or medication rather than fully exploring the cause of the patient's symptoms.
I have coeliac disease so I have to take everything for some quality of life. It includes amino acids (those building blocks). Although, some fool decided that I had an ‘eating disorder’ 3 decades ago. Of course, antidepressants were not going to work. It is a malabsorption autoimmune illness and requires input from a dietician. They are trained in biochemistry.
Best of luck.
Hi Ian
Not quite the same area but I have some experience.
I would suggest reading up on antipsychotics *causing low B12*…from my understanding (hampered by not having a medical degree) some forms will actively lower B12 through H2 receptor antagonists. I know this because psychosis was my first presenting symptom of my undiagnosed PA and I was prescribed Olanzapine which further lowered my B12 to dangerous levels causing a huge amount of unnecessary suffering for 3 years (could have cost me my life). Would have been cheaper and quicker to have been tested for PA and then treated with B12 injections from the first moments of presentation.
I would also say that, if you can, watch the BBC documentary on the SSRIs (panorama?). I am hoping very much that it won’t be long before they apologise to patients for the poor use of antipsychotics based on flawed understanding of neurotransmitters particularly when medical issues are left unaddressed.
Lastly, my experience of coming off of Olzanapine was best handled by being very very slow. I tapered the dose and then waited 6 months before considering tapering down. Why so long? Well it’s because the half life in blood is fairly quick but leaving the other organ tissues and fat layers very very long. In fact there’s a ‘blip’ period tapering Olzanapine where a mild psychosis is present for a few hours. I know that this wasn’t just my own experience because chemotherapy patients on Olzapine as an antiemtic report psychosis on discontinuation. Because of that, coming off is very hard, not only on the physical health changes as it learns to respond again without the medication but also personally. So slower is actually better for handling the tough experiences. Be gentle with yourself and your body. Also READ and educate yourself as best you can. Please never feel like it’s a defeat to increase the dose temporarily for a few days and then taper down even slower. It took me 6 years to come off altogether but I had to work hard on maintaining the best physical-medical health state possible (and still striving to despite the NHS).
Hi RoseFlowerDew,
Thank you so much for your reply! 👍
I was prescribed aripiprazole several years ago & in August/September 2022 I was assigned a new NHS psychiatrist. I had one phone review, I was told to STOP ariprazole immediately, & double antidepressant venlafaxine to 150mg. I then received a letter explaining that I had been discharged, & about 8 weeks later I was very ill with depression & psychosis!
I had to go back on aripiprazole, halve venlafaxine & once stabilized I tapered aripirazole down by half, in about February this year. I am still on this dose, & it must have been about 8-12 weeks after taper when the B12 type symptoms come on.
I did complain about this, & I even had a mental health triage arguing with me & saying that she does not believe my dosage would have this effect.
I am going to try & get an appointment with my doctor next week & have a good chat about everything. I have been B supplement free for 4 months, & should hopefully have the remainder of results back by then.
Thank you again!
Very interesting, thank you. I have copied and will digest at a later date. I was totally unaware that chemotherapy patients were prescribed Olanzapine.
pubmed.ncbi.nlm.nih.gov/362....
Another drug prescribed off-license ???
You’re welcome. Off-license, I don’t factually know but wouldn’t be surprised as the manufacturer lost a HUGE court case regarding its use outside of the original intention on the other side of the Atlantic.
Different medical systems and legal systems which depend on which state you reside in. Due process.
You’re welcome.
I would say read everything you can regarding thyroid and B12 and other deficiencies. Thyroid issues are mentioned occasionally as cause of multiple nutrient deficiencies but I have yet to understand it myself as my thyroid issues are fairly new. However I do know that sadly people forget that vitamins and minerals work together…get it out of balance and it will send some values in blood tests too high and others too low and it causes a huge range of “unexplainable symptoms”. If you take b12 you need to take the “cofactors”. See other posts here but things like b1,b3,b6,b9, iron. Folate causes real problems for me (I can feel dizzy and unreal) but a similar form, folacin, doesn’t cause problems at all (I feel better usually), which shows that there are also sensitivity to the various forms of vitamins. But it doesn’t end there….taking too much or too little iron will affect thyroid and parathyroid and electrolytes which need other kinds of vitamins like vitamin d, etc. All of this going on physically doesn’t give a great foundation for mental wellness because our nervous systems are sensitive by design of nature. Sadly for myself I know now that I am super sensitive to changes in physical health or even environmental factors like stepping briefly into dentists using laughing gas on patients, moulds, carbon monoxide, even fine art etching without adequate ventilation. On top of this there are confirmed changes in health in built up areas for all sorts of reasons e.g diesel particles.
As for NHS there are *very few* well informed staff regarding the deficiencies. Stories on the forums suggest that nutrition was removed from medical education as unnecessary because we are in a developed nation and deficiencies would never happen. Poor choice as it turns out because they didn’t consider food prices soaring. Also knowledge and interest has been lost. I believe they say today that there are no specialists anywhere in the world for b12 issues. I personally presume this is a Big Pharma issue because nutrition aspects cannot be patented and so ‘worthless’. Of course mother nature doesn’t stop just because someone says so and nutritional deficiencies and other forgotten diseases occur regardless of Big Pharma, or medicine personnel say so. Borrow a copy of the book Some of Us Just Fall as an example.
Now the mental health services just want to know you are safe for yourself and others and so if you keep that in mind always also bear in mind that the NHS is under strain. They don’t have to have the final say or ‘own the narrative’ as long as you are safe and recognise when you are well or not, but it gives you a bit of room to learn about what supports your physical wellbeing to the utmost. You’ve probably had enough hell with the depression etc so learn what helps your physical wellbeing and what doesn’t. It will then help the mental health side and make it easier until one day you find yourself in a better place. Good attitude and as good communication with staff as possible paves a way to understanding what the NHS can do to help you and what you can do to help yourself even though it’s personally very hard and lonely work.
Hi Ian , i was prescribed Motival an antipsychotic for anxiety not pychosis and later Mirtazapine when Motival was withdrawn in the UK. I wondered about the link between them and my PA diagnosis. I weaned myself off Mirtazapine very slowly . But then I’ve also had prophylactic antibiotics for years for heart valve disease so both could have contributed to poor microbiome health and poor immune health
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