Increased anxiety has become one of my worst symptoms of B12 deficiency and (possible*) PA. I’m on 4 weekly B12 injections (Hydrocobalamin 1mg) on the NHS but I’ve not noticed any improvements so far. I’ve had the 6 loading doses and 2 further injections so far. I’m taking D3/K2 (3000iu/100ug) and Magnesium Glycinate (300mg) daily. I’m not taking folic acid. At numerous times my GP and neurologist have suggested antidepressants but I’ve resisted so far, but I may give in!
Can anyone suggest antidepressants that have worked for them? Something mild with minimal side effects, if such things exist, that seem to sit well with B12 deficiency and PA.
I fully appreciate that a solution could be more B12 injections and I’m starting to consider the SI route.
Thanks in anticipation.
*I say possible PA as my test was parietal cell autoantibody positive 140, IF antibody negative. For now I’m assuming I have PA as it gives me leverage with the NHS, but it’s not conclusive.
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Pa234aw
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No, I am not recommending an antidepressant. Wrong illness, wrong drug. They have side effects which can include indigestion, trouble sleeping, sexual dysfunction, loss of appetite, nausea, diarrhoea, dry mouth, and rash.
I fully appreciate that a solution could be more B12 injections and I’m starting to consider the SI route.
Please know why you cannot have more frequent injections = Cost. As discussed with a private doctor. Once the professionals write on your Medical Records - Anxiety and prescribe antidepressants some doors may close for you. But your Medical Records are legal documents as are every prescription.
Each GP Surgery has a budget and the bulk of the cost in PA is paying the nurse to administer Hydroxycobalamin.
Appreciate what you are saying about antidepressants. Sadly anxiety disorder is on my records from before my B12/PA was diagnosed as my GP was running out of options to treat my multiple symptoms. And I admit I was anxious because of those symptoms and not knowing what was wrong with me! Vicious circle! I’ll tread carefully.
Also fully understand the NHS position and I’m amazed I’ve managed to get to 4 weekly but my neurologist sees neurological symptoms and a haematologist agrees with the increased jabs. But no one has suggested EOD yet. I’m working on that.
Well you can have anxiety disorder removed under GDPR (2018) Right to Erasure. Medical Records have to be accurate, have clarity and contemporaneous. Usually through Medical Records of Trust. (There are many clerical and administrative roles in the NHS - it is NOT a GP or neurologist’s job to do this).
In medicine when working towards a diagnosis, obviously things are written in Medical Notes. Just as an example, a family member was taken in, it took a couple of months. The doctors went through lots of haematological conditions and was treated for them. Finally, the answer was found - leukaemia. He did not have Fanconi Syndrome etc etc. So, what happens if the correct diagnosis and treatment is not on a person’s notes in the future ? It often results in the patient arguing with a doctor, Look honestly, I was in isolation in this hospital for months. I was a teenager, lost my hair. A doctor turns round and says, You can’t have - there is nothing on the computer system.
Pa234aw, once a month equates to approximately £240.00 that does not include the price of your 6 loading doses = £120.00. Totally so far = £360.00. Referral to neurologist and haematologist. Their cost falls under a different budget. Not Primary Care.
So, you are up to £360.00. A GP budgets around £158.86 per patient per annum. 🤓
The cost and resource time is a big issue. I know a surgery receptionist and they say that booking B12 injections is constant. I had no idea how many people were being treated. No wonder the NHS is trying to limit it.
Look, the bigger picture is a GP Partnership is given a pot of money. Here run your business, pay your staff, pay for electricity, pay for equipment. What has happened to the price of electricity in recent months ? The pot of money has not grown. The NHS got absolutely battered by COVID-19 and has not recovered.
Primary Care is unsustainable. The Policy Makers just ignore the staff working Front Line like GPs. Come up with fancy, unrealistic ideas. You have Ministers listening to ‘management consultants’ who know absolutely big fat zero about healthcare, charge millions for their ignorance and more money goes down the drain.
You speak to a GP as a person, they are absolutely fed up of excuse the wording ‘of being shafted’. They have gone technology mad with expensive ‘new systems’. Any guesses ? They are rubbish - GIGO.
I forgot to answer one of your earlier questions. I’m not taking a multivitamin or minerals. I’m taking a D3/K2 tablet and a Magnesium Glycinate tablet.
Yes I noted. All the B’s (except folate) work together at cell level in the energy part of a cell (mitochondria) in the Citric Acid Cycle -
There are 3 Blue (B1s)
There are 5 Green (B2s)
There are 6 Pink (B3s)
There are 5 Orange (B5s)
There is 2 Purple (B7s)
and ONLY 1 RED - B12.
All are water soluble - excess excreted via renal system into urine.
So, having optimal of other Bs help ‘ignite’ B12. Magnesium Threonate passes through the Blood Brain Barrier - a semipermeable membrane for our Brain 🧠.
Thank you. I was prescribed amitriptyline but I didn’t take it. The list of side effects was too scary. It’s used as a painkiller but it’s strong antidepressant really. A mental health nurse I spoke to was dismayed that it’s being prescribed so often. Even 1 at night can knock you out for the next day. But I’m sure it helps some people.
I’m not going to rush down the antidepressant route. Give the B12 a bit more time.
Do you think that optimal treatment of pernicious anaemia can help reduce pain? I'm upping my injections to weekly for now, plus D3 with K2 and folate. Had a recent iron infusion. I'm going to get magnesium to help the D3 and add B complex. The widespread pain is so difficult to live with and I'm now struggling with being tearful which I think is largely due to being in pain causing anxiety. I took smallest dose of amitriptyline the last 2 nights which at least gives me a better night, otherwise I've got pain through the night as well as daytime.
Thank you. I've been on 10 weekly jabs since 2005. Now the g.p. has agreed 8 weekly but I've just seen a consultant privately who has given me a prescription to self inject weekly for now then fortnightly with a review in May. He doesn't believe in fibromyalgia. The widespread pain has been for a few months. The back pain has been over 2 years. The consultant is going to refer me to a rheumatologist if the pain isn't helped by increased B12, the iron infusion and vit D. All those years I thought I was OK enough with my 10 weekly jabs but I've had so many digestive issues all that time and never felt properly well for any length of time. Reading on forums like this is helpful to gain insight. Thanks again.
I was not nearly as patient with the system and the system here is so much better than some places, certainly much better than I had prior.. . . . . . I said to myself that to treat ones self which is done on ones own has to be slow and cautious and that would be slow enough. . . . . . You already know you need B12 so you are not self diagnosing or as my father in law would say suffering from imagination and you will gather from many here that even monthly jabs are seldom enough. . . . . . Go somewhere , anywhere and try a few jabs much closer together would be my choice. . . . . I could not find anywhere short of a 3 hour train journey so it was DIY or nothing. . . . . I did though have the benefit of having 3 jabs one week apart 5 1/2 weeks after my loading injections and I didnt need telling after that. . . . . it was a real roller coaster. . . . . . I have a neighbour who gets every 3 months and he loves to be getting it yet he wont even ask for monthly. . . . . . Ye have to push, even if its push yourself. . . . . .
Forgot a bit. . . . . . . I dont remember the year but it'd be around very early 2000s and in a belfast hospital and a doctor was going down the fibromyalgia route and I stopped him by telling him....Do no write that down, I do not have symptoms of such and that is just a cop out. . . . . . He replied. . . . . Well then that is all we can do for you then. . . .
My first symptoms were insane back pain! That happened for 4 years before I was found severely low and bed ridden. At that time the back pain was so bad I was taking tramadol and ibuprofen. Neither of which I wanted to be on permanently but that was the outlook. I had never done anything to injure my back.
Weekly injections just might not be enough. I did daily for 2 years and the back pain went away. I suggest self injecting . Get your own supplies.
add benfomax 200mg to your daily vitamins. And a b-multivitamin
Most importantly, You need daily b12 inject. If they won't hive them to you, get your own supplies.
And if you need, take Effexor (Venlafaxine)
But if you do, you will need to taper off. It is very strong but I took them for 2 months and tapered slowly off to the point I broke open the capsule and took a few balls at a time until I didn't have any withdrawal side effects; which by the way were minimal but noticeable.
Here's my canned response to people new to b12 deficiency:
It takes 4 years to deplete the stores and end up that low.
I was that low and was bed ridden. Forgetful. All sorts of back pain. Poe coordination. The only solution was to inject b12 daily. After 2 years I was out climbing mountains. I'll never be the same but I have come a long way! There is hope!
If left untreated the symptoms can become Permanent.
This best to get started with injections so you can heal.
As long as your liver and kidney function tests came out normal, then you cannot overdose on b12. The only time b12 is toxic is if you have an underlying, unrelated, already existing problem with the kidneys or liver but if those tests were done and they are normal then you are good. B12 won't cause a liver of kidney issue.
The healing process will be slow as in 2 years or more for me.
I highly suggest requesting frequent injections. If they won't give it to you, have them teach you how to self inject so you don't have to keep coming in for the subsequent injections.
Any time I tried to space out the injections my symptoms returned and I would have to start over again
Then don't tell them just keep doing their regiment and buy your own supplies so you can do frequent injections. It's what most of us do because b12 deficiency is so misunderstood.
This article explains all the misconceptions as well as facts.
ncbi.nlm.nih.gov/pmc/articl...
The pernicious anemia society has great info as well!
pernicious-anaemia-society.org
Ask any questions on this forum.
Many here have thyroid and iron deficiency as well. Also there are iron deficiency groups on healthunlocked that are good as well.
Cheers.
Be good to yourself. It takes a lot of patience and self love.
I've suffered with severe anxiety, panic attacks and agoraphobia my whole life (I'm 45).
I've tried many medications including pregablin and diazepam and took antidepressants for 18+ years.
Since discovering I was B12 deficient, as well as B9(folate), ferritin and Vit D over a year ago I have been SI EOD B12 and taking tablet supplements for the others and my anxiety etc has gone!
I have tried to extend the time between injections but found it always has an immediate affect on my mental health. If you have time, research about the neurotransmitters and B vitamins.
My personal experience with medications for anxiety and depression is that I won't take them except for an occasional 40mg propanolol which calmed my body when it is in fight or flight mode without all the awful side effects.
I take a lovely natural antidepressant, far better than anything I have ever been prescribed called 5htp or graffonia seed extract. Natures Aid do a good one. It takes about 3 days to work and I have no side effects except perhaps increased libido.
I was offered a choice of anti-depressants or hrt for my symptoms, which included anxiety. I started self-treating with vit B12, D, Iron (ferritin had been low for years) and a multivit and lo and behold, my anxiety goes! My fear for you, as has already been mentioned, is that once you accept antidepressants that's job done for the medics and you'll struggle to get any further treatment or investigations. There are many side effects with these type of drug, which are often not easy to come off either.
B12D/PA is so often accompanied by anxiety/depression. I'm convinced that this is both physiologically and because the illness and constant struggle with the medical establishment makes anyone depressed and anxious. I agree that taking antidepressants may not be a good idea. The priority is to get to the cause of your symptoms. Consider trialling EOD SI. Think in terms of a year to find out. And my latest discovery for my recovery is ferritin. Mine is low but in range. I was no longer prepared to accept a low reading and have had treatment from which I already feel the benefit, including the alleviation of anxiety/depression which had improved with B12. So, question the antidepressant approach and resist it.
I think this is a tricky one, I suffer/have suffered from anxiety that I believe was related to my B12 (I wasn’t really anxious about anything, I just felt the physical symptoms so badly sometimes I couldn’t sit still and had to pace around) but I do also have ongoing anxiety that I don’t believe is related.
I’d say it took months and months for the B12 injections to reduce that anxiety but it did go.
For the ongoing anxiety I eventually had some CBT for free on the NHS - it was online therapy that I was able to self-refer for so I didn’t even have to see my GP. I was initially assessed as having severe anxiety (I was really struggling to cope at that point) and by the end of 2-3 months of sessions it had fallen to a much lower level that felt very manageable and the sessions ended. I was told I can go back for more if it escalates again. I’d say that’s definitely worth looking into before trying medication or alongside medication.
Over 10 years ago I was offered antidepressants around the time my B12 treatment began. Several times I have tried to come off them with devastating effects. Anxiety and Severe mood swings ensued. Now I can’t live without them.I would recommend Talking Therapy with a psychologist , where you will be taught coping mechanisms. The final decision is of course yours. Just remember it’s your mind and body at risk here. Not the Doctors.
I am truly sorry to hear of your concerns, my husband had antidepressants, and has suffered permanent damage, numbing of the body and mind. Did you see the recent Panorama programe on SSRI's .. I personally would be very reluctant, I know these side effects do not happen to everyone, but is it worth the risk?
I am dreadfully sorry to learn of your husband. I am fully aware of the permanent damage antidepressants can have on people. There are reports, statistics and research published on other websites about their harms which I keep abreast of.
I have not watched the Panorama episode on SSRIs but will do. Thank you. Pa234aw is having them pushed on them. In a recent dietetic nurse appointment, they asked What prescribed medication I was taking. I retorted, Well decades ago, I was put on antidepressants because clearly they are the cure for Coeliac Disease. They asked, So you are on antidepressants ? Which ones ?
No, I’m not. I’m just extremely sarcastic. The dietetic nurse suggested blood tests. My reply was, Look I am deficient in everything. This was all sorted 2 years ago. Then I name dropped the private dietician I worked with. They asked about the frequency of my Hydroxycobalamin. I have a deal with my G.P.
I do not remember my numbers but I was barely anemic . . . . . Our numbers here I am told have since moved though so would have been anemic if it were today. . . . . I was B12 deficient though. . . . After my loading jabs and 5 1/2 weeks i went back to GP and I got 3 more jabs over 3 weeks . . . . . . It was a roller coaster of energy and emotions . . . . I had suffered from supposed depression and anxiety for years. . . . . The anxiety would arrive often many times per day yet my mind never felt anxious rather my symptoms were near to all physical. . . . . Those waves of panic were exhausting . . . . The depression/anxiety diagnosis was rubbish. . . . . Today I can feel anxious and I can get down a bit but nothing like before
As soon as I stated SI my problems went bye bye more or less. . . . I used to llook here and could not believe people SI ever day as all my reading suggested that while B12 only really stayed in the system a few days at best it should easily have lasted 2 or 3 days. . . . . But I didnt say anyone was mad, daft or otherwise and after years have worked around to using B12 SI a whole lot more than I'd have ever thought. . . . .
So yes lack of B12 had a serious effect on my mental wellbeing . . . . .
hello, anxiety can be a significant issue. I ascribed it to Thyroid: years later panic attacks for no reason. Disappeared with B12 injections, but still anxious at times. I have tried St Johns Wort in the past; now occasionally take Bach Rescue Remedy. Sorry, unable to suggest more. Best wishes, x
I had appalling anxiety but seem to have fixed it with Thiamine B1 (TTFD) and eating an ounce of lamb's liver daily (for folate). My folate was on the floor but I didn't want to take folic acid. I also take a multi b, mag glycinate, vit D and choline (to help methylation).
Also these doses are considered high doses. Not very high but high. B1 requires magnesium and potassium and other b vitamines to process.
Just take a magnesium glucinate 400mg daily and that multivitamin.
Maybe supplement with potassium but don't take over 5mg a day as a potassium overdose resulting in death can occur. Not to say to be paranoid but just pay attention when supplementing. Sticking to 3mg at most or under should be safe.
like woo79 said, b deficiencies will cause anxiety
Keep taking your supplements, take a b multi and do daily injections. It may take 1.5 years to get the anxiety to settle.
aside from the b vitamins causing anxiety, just the fear of feeling permanently like this or getting worse can cause anxiety and would with even the best. So keep doing as suggested. Stay the course, be good to yourself. Cut back on tasks as much as you can.
I have a demanding career and got lucky I didn't loose my job but I put all energy there and neglected the rest except testing and loving myself.
If you get desperate as in suicidal, taking effexor for a short time may get you by. Confession, I was there and had NEVER. Taken antidepressants despite having gone through a lot, but the b12 deficiency at its worst on top of my family completely exploiting me during it and my coworkers jumping on the bandwagon while I was down was enough to send me ther. Like I say, I got desperate and took the Effexor for 2-3 months then tapered ever so slowly.
Only you know what is best.but the frequent injections will help get you out of the funk. And because it's a slow progress, it's best to get started as soon as possible and stick with it because mentally you'll want to give up or skip injections but in those cases remind yourself that it will get you better. Think about how good you will feel and remind yourself all will be ok.
I take one capsule of Thiamax daily (100mg, from Objective Nutrients) and I flash fry my liver (about an ounce or a little more) so it is brown on the outside and slightly rare. I do this for taste reasons. I buy the liver and freeze it in small portions, enough for breakfast with buttery eggs. There is a tiny amount of thiamine hydrochloride (25mg) in my multi B (B Complex Multi B methyl free from Seeking Health) I have eaten liver raw, and it was fine. To do it raw I chopped it fine, froze it on a baking tray then bagged it up and added a sprinkling to whatever I was eating.
I think early on I did have a few weeks (after starting on one 100mg capsule a day of Thiamax) of having two a day, but I didn't do that initially and I didn't do it for long because I could feel the difference that one capsule was making quite quickly.
Pa234aw I haven't read all the threads in your post, but as someone who had antidepressants pushed on them for over 20 years before diagnosis with pernicious anemia, I would strongly advocate for more B12 injections for you.
Take my opinion with a grain of salt, you are the expert in you and if you need an antidepressant to tide you over while you figure out how to source more B12, I fully support you as well. I do think there is a real danger though of covering up advancing neurological and cognitive issues related to increasing B12 deficiency. Recovery with B12 is also somewhat time sensitive, longer without (enough) can equal more permanent neurological damage.
Pa234aw Vitamin B12 was found to be an effective option for treatment & prevention of depression/anxiety. However, B12 & folate are "dependent" on each other’s for proper utilization in our bodies. If B12 is low, folate can’t convert. If folate is low, B12 cannot be used properly. What is your folate level ? You can increase injections but w/o an adequate amount of folate they are wasted, exacerbating b12 deficiency symptoms. It has been noted methyl folate can increases anxiety in some. When taking folate try to stay away from methylfolate. I had terrible anxiety in the early days, and it subsided after "adequate" amount of b12 injections. Doctors also wanted to put me on antidepressants, but in the end, it was the B12 that relieved the anxiety. To this day I still have some insomnia, working on trying to resolve.
I have had insomnia all my life although I dont look upon a serious problem I am told it has negative effects on us. . . . . . . . . . . do you think it is related to B vitamins also . . . . I have not had any joy with tinkering to date. . . . . . .
OldmanD -As you have had insomnia all your life your circumstance is different from mine. It appears to be your normal (not sure how long you have had B12D). My insomnia was more pronounced after diagnosis of B12D/PA. I keep a pretty extensive log of my sleep. The day of my injections I sleep approx 6-8 hrs. The days I do not inject I typically sleep less in the evening. In the early days my anxiety was so high it led to insomnia. Once on injections the insomnia lessened a great deal. I started LDN and it help w/ my sleep, but it increased my resting heart rate. I was on a very low dose .25mg and I felt pretty good & slept pretty well. I have since stopped taking it. I am looking at lowering dosage to .1mg and titrate up from there. Hopefully my resting heart rate will not increase if I start lower. The LDN made me feel so well, I did more activities and hence had to increase my injections, as increased activities will use more B12. My hope is once I start up again at lower dosage of LDN, I can balance out the LDN & b12 for improved sleep. Should I not be able to take LDN at any dose, then I will work on adjusting B12. I do take a B complex every day. It is my understanding you need to do so to keep the other B vitamins in balance, as taking a single B12 injections for prolong periods of time creates an imbalance.
I couldn't really say all my life if I am being honest.. . . . Adult life certainly. . . . When younger man I actually thought it was great to be able to lay in bad and rest while solving engineering problems to the extent that I'd go through every possibly way in which things could pan out and have an answer to every possibility. . . . I was quite good at relaxing until the wee hours.. . . . . . I managed kinda fine until my 40s when I first crashed and I maintain was due to B12 defiency. . . . I really needed to sleep after that and my mind def was not capable of solving anything so being awake was really bad. . . . . . I def could not deal with being awake now all hours and while I have a much more active mind today I would not want to be awake half the night . . . . . I do wake and often dont get back to sleep easily but I eventually do sleep again. . . . .
OldmanD - You know, I also use to try & solve puzzles & work issues attempting every possibility in my head while lying awake. This was all prior to diagnosis (guessing I had a B12D during those years just did not know it). I no longer attempt to do such as it would create sleep havoc. I can always fall asleep, but staying asleep is the issue. Hopefully I will sort it out.
disclaimer I’m not a doctor and my kids often tell me I’m imagining all this but…
My first symptom to return is anxiety and loss of coping ability. I self inject every 5 days and if I even try to stretch it to every 7 days I am miserable and terrible to live with. At the height of my deficiency I was completely crazy can’t believe I wasn’t institutionalized and I don’t want to take any chances going backwards. Wonder how many people would walk out of institutions/therapy/treatment centers perfectly healthy if they were all given b12?
Hi Pa234aw, i hope im not repeating what other's said as im to tired to read them all, but anytime i can help someone NOT have to take antidepressants, i try. I can tell you that b12d/PA, sent me down a terribly rabbit hole of antidepressants, cymbalta, gabapentine, and other anxiety meds over 44 years, to the point of near death. I didn't need any of that. All i needed was b12. After suffering for 44 years, it took nearly 3 years of daily injections to get my anxiety under control. I also went through a devastating personal loss of my home and everything i had, so getting everything under control was very hard, but i told myself i would never take antidepressants again. They nearly killed me twice. Antidepressants made my b12 symptoms worse. At the time i had no idea I had PA or what was wrong with me. I went through decades of great suffering and gaslighting by doctors and family. Just to add to my anxiety and depression. All any one of many doctors had to do, was check my b12.
You have only just begun your journey and your body has not had enough time or b12 to reverse your symptoms yet. You had loading doses and 1 injection a month. In my opinion, that's probably not enough for anyone with PA. You will need b12 for life, literally. I and many others inject daily. I have to inject twice a day sometimes, like today.
If you had a positive IFAB test then you have PA. Plus symptoms, makes it pretty clear.
When you first start injections you might feel worse for a little while as your body drinks up that B12 and starts repairing itself. It's called reversing out. Everything that is going wrong with you because of lack of B12 will start waking up and repairing itself, so you could feel a little bit worse for a little while.
It's been 3 years for me, and I'm still suffering quite a bit with some things, but I'm also quite a bit better with other things. But I do have to inject everyday.
I think possibly, and I'm not a doctor, that you might need more B12 than just once every 4 weeks. I would at least start with once a week and see how you feel. or EOD (every other day). Good luck.
Anxiety and depression and feeling unhinged, panic attacks was my first clue that something was wrong with me. I kept going back to GP who said it was burn out. I knew something wasn’t right. Anyways, I was eventually diagnosed after testing positive for IF and AP antibodies. So finally started daily injections and learned to self inject. My anxiety and depression lifted. So my advice is to try self injecting more frequently and see if that works before taking antidepressants.
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