Depression after sublingual B12 - Pernicious Anaemi...

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Depression after sublingual B12

40 Replies

Hi there,

I recently started taking 1000mcg of sublingual methylcobalamin and a B-Complex (Jarrow B Right) in an attempt to raise my low energy levels and mild fatigue. I've noticed since I started quite a remarkable increase in depression and anxiety to the point where I'm breaking down in tears. While I've had bouts of depression for years I can't say it's ever come on as prominently as this. It feels like someone has draped a lead blanket over my emotions and I feel physically depressed in my body if that makes any sense. I've also started getting considerably brain fog and feel like I'm walking around in a daze, for example being unable to differentiate between items on the shelf at a supermarket which is very distressing and unusual for me.

So my question is, can a b-complex or methylcobalamin cause a worsening of psychiatric symptoms? Is it likely to get better after a while if I were to continue taking them? What was your experience with taking sublingual methylc?

All the best

Conor

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40 Replies
wedgewood profile image
wedgewood

The only thing that springs to mind is that you are not having enough vitamin B9 (folate ) which acts together with B12. If you have not been diagnosed with B12 deficiency the reason could be something quite different . I would always suggest a vitamin B complex supplement if you have no diagnosis .

Marz profile image
Marz

healthunlocked.com/thyroidu...

Sorry you are not feeling well. I have linked your Post/Thread of a year ago which was on the Thyroid UK forum. Am wondering if you have had any recent thyroid tests which could explain your current symptoms. Low T3 for example ?

Have a read through the thread and see if there is anything that rings a bell or that you have missed :-)

in reply toMarz

Hi Marz, the thyroid was an interesting one, I had made so much progress since that post and had the energy levels most people would be happy with but I knew I could get more. I ended up taking about 1mg of lugol's iodine every other day and within 6 weeks felt fantastic.

As you say though it was the first thing that I thought about and discussed with the doctor, while I haven't had my T3 tested my T4 is: 21.8 [9-24] and my TSH: 1.4 [0.2-5]. I'll definitely have a reread of the thread though, thanks for bringing that back to mind!

Marz profile image
Marz in reply to

Yes your FT4 is at a good level - but the burning question - is it converting into the ACTIVE thyroid hormone T3 ? Without that test it is difficult to tell. As you know the T4 is a storage hormone and needs to convert into T3.

T3 was used to treat low mood and depressive illnesses in the past - so yes the information is out there - but the present day Docs are trained to look at their screens full of results - and not the clinical symptoms. T3 was abused in those days as people realised with adequate doses - they lost weight - so taking more caused AF and so the treatment received bad press.

I have Hashimotos and am T3 only :-)

in reply toMarz

Its such a shame, and to be dismissed for being within (low end) healthy ranges, even if you're showing clear symptoms is diabolical. It is on my mind though and its one of the handful of private tests I want to have done so when there's a bit of money in my back pocket! Do you use NDT?

Marz profile image
Marz in reply to

No - just T3. I live in Crete so can buy it OTC without a prescription. Can also have the tests done I want. Greece may be bankrupt - but civilised when it comes to freedom of choice 😊

in reply toMarz

What a difference that would make to so many people living here! I noticed you posted a link warning about sublinguals, whats your personal opinion on them?

Marz profile image
Marz in reply to

I do take Jarrow Methylcobalamin when I am not able to have an injection or when I feel the need ! Am not sure about the effect - I certainly do not feel any worse - but think my neuropathy issues were beyond repair before I learned about B12 - sadly. I also find ataxia difficult to cope with - especially in the dark. Not sure anything has improved that situation - but I live in hope :-)

deniseinmilden profile image
deniseinmilden

I feel just as you say when I am short of potassium too. Your body needs extra potassium to make use of the B12 so taking the supplement could reduce your potassium levels. Do you get cramp? This is another sign.

There are several cofactors needed to metabolise the extra B12 - particularly folate, potassium and magnesium, maybe iron plus many others in smaller amounts.

For this reason I take a broad spectrum multivitamin and mineral supplement, (I find Tesco's A-Z multivitamins and minerals is comprehensive and not expensive) rather than just a B-complex.

Folate as folic acid or methylfolate is important.

Ideally you should get potassium from your diet by eating potassium rich foods (Google it) but you can also use LoSalt, available from some independent stores, instead of normal table salt.

Magnesium is available as Epsom Salts (magnesium sulphate) or I use Magnesium chloride flakes.

in reply todeniseinmilden

Hi Denise, potassium had cropped up as a potential thing so I've been eating about 4 bananas a day and other high potassium foods just in case. I also take 400mg magnesium glycinate a day, maybe I should raise this up a bit?

Thank you

matty220 profile image
matty220

You say you 'recently' started taking the B12 - how recent was that. When my B12 was 284 (in a range of 190-900) I started taking the 5000mcg, i per day, and it took about 2 months before I could honestly say I felt the benefit. When I'd taken them for 4 months I thought I'd cut to the 1000mcg but I got a return of symptoms so I'm back with the 5000mcg. You can't overdose on it so why not?

I take the Thorne B complex with the B12, it's the one recommended on here as being the best type.

in reply tomatty220

Started about three weeks ago but initially stopped after the first week, started again 6 days ago. Did your symptoms get worse before improving?

matty220 profile image
matty220 in reply to

No mine didn't but I like the response from goldlion - it makes so much sense. Persevere :)

goldlion profile image
goldlion

I had a very similar reaction and Hugo from the B12 charity emailed me this---

Hi Anna

When your nerves start working again, the brain often doesn't know what to

do with the signals. It will typically take a couple of weeks for your

brain to change the signals from anxiety into thoughts, and your muscle

tremors etc into steady movements. If you cut back on the B12 intake, then

you probably would never get past the barrier of enough B12 (and side

effects whilst you are going through the barrier), which would be very

upsetting. We call it "reversing out syndrome" (getting the symptoms you

did whilst you were developing B12d, only all at once) and it affects about

1 in 10.

Hope this helps

Hugo

in reply togoldlion

Anna that's really interesting to read thank you, I had wondered if the sudden access to b12 had just started quite a dramatic shift in what was happening upstairs. May I ask, did you decide to continue through the 'barrier'? How long did it take to see improvement?

Thank you!

in reply to

Sorry I forgot to ask, which charity is this?

Gambit62 profile image
Gambit62Administrator in reply to

If reply was from Hugo then I think it must be B12d.org

in reply toGambit62

Ah great, thank you. I'll have a look around

goldlion profile image
goldlion in reply to

I did continue yes, it also give me a prickly heat type rash on my chest and arms at that time. The awful feeling lasted a couple of weeks. I am getting better very very slowly. I'll message you later with more detail!

in reply togoldlion

Thank you goldlion, I really appreciate it. Looking forward to your message!

goldlion profile image
goldlion in reply to

Sorry, been caught up in a family crisis involving trips to A&E, wound clinics and GPs...

Right, my b12 levels started at 236. I have been a vegetarian with periods of very little dairy since childhood. I was sent for brain scans, full body MRIs etc etc by medical staff worried about MS and tumours but who did not seem concerned about my b12. I kept saying almost all the symptoms on the list of b12 deficiency symptoms were familiar to me but they wanted to rule out 'serious' stuff. I started taking sublingual Jarrow b12 5000 mcg, one a day. Very quickly, say a week or two later, I felt like you described. I emailed Hugo (who I found after one of my marathon Google fests) who emailed me the reply I cut and paste for you the other day. I was scared and the dr prescribed citalopram for me. I took 2 very very reluctantly and then stopped as wanted to see if what Hugo said was true and 2 weeks in I did indeed feel much better. I'm not sure if you're female or male but I was still getting anxious, tearful and very very drained around my period.

Looking back to the beginning of Feb when lots of my symptoms suddenly started I can see that I'm much better but it is hard to quantify on a day to day basis as recovery is sooooo slow. It is an up and down with a very slight incline over many weeks and months type recovery. My b12 levels were over 2000 at the end of June so the sublingual tabs def absorb. Oh and I started taking 3 a day back in April and experienced a little of the same short term effect of increased anxiety etc. I now take 2 a day, God knows why, I am just guessing at this whole thing! I still do not know if it is def b12 deficiency but then I think about it and think course it is, it's just like I read over and over, tinnitus, pins and needles, numbness, dead leg feeling, sore tongue, bad tummy, twitching, etc etc. I also take the magnesium potassium folate multi vit that everyone suggests plus b6. And I've gone gluten free. I have to see consultant on Friday who told me on my last appointment that he was discharging me and would only see me if something 'rarer' came up on the latest of my blood tests.

Hope you are feeling better? It is a horrible thing to go through.

Anna X

in reply togoldlion

Hi Anna, thank you endlessly for taking the time to write that, it's very valuable to me to hear real stories from other people. I also hope everyone is alright following your ordeal with A and E..? Last thing you need to be dealing with right now considering how you are feeling! My own experiences with citalopram weren't great in the long run, so while I can certainly appreciate their uses for some, I think in cases like yours, ultimately, the best goal is treating the cause, whatever that may be. Hopefully the doctors will eventually consider what you are saying about B12, but I hope there is at least some relief in ruling out other things too.

I have to say though, and I've been meaning to post an update, stopping the B-Complex has done me a world of good. My theory is that I had initially felt great when I first started taking the B12, but a week after stopping (following sickness which I thought was caused by the B12) my body started to scream for more which is when I went downhill. It took me a while to start taking them again and when I eventually did I threw in the B-Complex too but things got considerably worse. I decided not to take it on Sunday morning, haven't since but continued with the B12. By Sunday afternoon I felt considerably calmer and less emotional. Monday was the best I had felt in months, huge surge in energy, clear headed and the heavy blanket of depression had been thrown off my back. I even went out for a 6 hour hike in the Lake District. Today was a little bit iffy in the early afternoon, but I attribute that to being out in the sun too long yesterday and not having drunk anywhere near enough water before going out for another hike. Overall though, I feel totally reinvigorated and for that I am very lucky. I very much hope you find some answers and eventually start to feel much better and thank you again. All the best and good health.

Conor

Gambit62 profile image
Gambit62Administrator

I have something similar - in as much as methyl does nothing for me in relation to neuro-psychiatric symptoms. The body needs two active forms of B12 - methyl and adenosyl. Generally people have no problems converting one to the other but there have been a few documented cases of people who can't convert the two so either need to be taking both or using hydroxo and cyano which they can convert to both - pretty sure that this is the case for me as methyl does help with some symptoms but not with other.

So, I'd suggest either trying to add adenosyl into the mix or going for hydroxo/cyano as a supplement.

Others have suggested other possibilities - such as other things getting low - like potassium, or folate ... or something else entirely kicking in - like thyroid.

Hope you find the answer soon.

in reply toGambit62

Hi again Gambit,

Would I keep mb12 and adb12 in a 1:1 ratio?

Gambit62 profile image
Gambit62Administrator in reply to

different people are different and I don't know what studies there are - think it is just a question of try it and see. I use a mix of hydroxo, methyl and adenosyl and I probably am about 1:1 but that doesn't mean it would be right for you. Start with 1:1 and see how it goes.

Justified profile image
Justified

Hidden I felt exactly like this with Jarrow b12 and had to stop them. Funny thing is i am absolutely fine with Nu U methylcobalamin

in reply toJustified

Hmm that's interesting, maybe I should look into a different brand. I had avoided Nu U because of the amount of junk in the ingredients but perhaps its worth the trade off

Meggymoo63 profile image
Meggymoo63

Hi I have PA B12 deficiency jabs every 8 weeks and also on citalopram. I tried supplementing with meth B12 and my symptoms worsened felt terrible I cannot take meth folic either. I think u should stop meth and try something else. Not a doctor but is trial and error with sublingual. If u are on Facebook look up B12 forum loads of help and advice. Good luck xx

in reply toMeggymoo63

How long did the side effects of sublingual take to wear off? Do the injections work well for you?

Thanks Meggy

Meggymoo63 profile image
Meggymoo63

Just read above comments have you been tested for B12 and PA and thyroid all closely link. I have underactive thyroid but feeling really well now I have worked out what works for me. Took quite some time though.

in reply toMeggymoo63

I have for B12 but it was in the normal reference range, I'm going back to the doctor in 10 days and I'm going to talk to her about PA so we'll see how that goes.

Meggymoo63 profile image
Meggymoo63

The subs wear off quite quickly within a day or so depending how long u have been taking them. I avoid them completely as my body will not tolerate them. Ask what your actually B12 range was as docs as they seem to think anything 200 and above is normal which it is not. Being diagnosed has changed my life so perserve with it all. If they test you again don't take any B supps beforehand. B12 testing is so inaccurate as we carry active and inactive B12 in our body. It should be treated on symptoms not just tests alone. Sorry for the long post 😳

in reply toMeggymoo63

This is something I'm worried about, absentmindedly I had started taking the b12 about a week before my level was tested but it occurred to me that it might skew the results, I had only stopped taking them for around 4 days before my bloods were taken. My level was 506 [150-900] and I haven't been back to the docs yet so I'm fairly convinced they'll immediately dismiss it.

matty220 profile image
matty220 in reply to

Personally I would suggest you stick with the B12 you've got for a while as it hasn't had a chance to work yet. If you're switching from one thing to another every few weeks you'll not know what actually works. I wanted to switch from Levo to NDT but I also needed B12. I took the B12 for 4 months before I switched to NDT. I'm really happy now self medicating on these.

in reply tomatty220

Thanks matty, I think I will stick it out, from what I understand it could very well just be a manifestation of everything I've been feeling for the last few years. Hopefully it will wear off soon because this is frankly horrible!

pvanderaa profile image
pvanderaa

Sounds like you've been trying to sort out what is what for a while. The symptoms from B12 supplementation are some times similar to the deficiency.

Food issues can also trigger symptoms but it doesn't sound like you have issues with gluten or dairy.

I suspect you are getting more and more deficient in B12 and your supplementation skewed the test results . You probably need injections.

One tool to help sort this all out is a time logbook of all your symptoms. Try to assess a severity score. Your own scale is fine.

Also record your food and meds. The symptoms can occur between 3 and 48 hours after the cause because the gut is involved .

Look back in the log for a possible cause. The logbook also supports the short term memory loss that can occur with B12D.

Once you start supplementing, symptoms also appear that are similar to your existing symptoms. Headache, aggression were two of mine. These recur the same time after either injection or supplementation.

You also need a daily multivitamin, folic acid and B6 to support b12 is the repair of any nerve damage.

Gluten or dairy for me causes brain fog about 24 hours later so this just confuses the investigation .

in reply topvanderaa

Yes I think I might well have messed up my tests, I'll speak to the doctor about it when I see her. As for gluten and dairy, both have been out of my diet for years. I only eat meat, vegetables and fruits really, nothing processed. I've had stomach problems for a long time though so I think my issue may be with absorption, I'll try to get PA assessed.

pvanderaa profile image
pvanderaa in reply to

Regarding Your stomach issues, is it like heartburn?

For me my heartburn arises from too little stomach acid where it becomes alkaline. Too much bile backing up from the duodenum.

Are you taking any antacids? These can causes issues in some people.

For me the solution is tomato salsa with breakfast, an orange with lunch and dinner. Orange juice before bed.

in reply topvanderaa

Heartburn is a part of the issues; I have IBS as well. I take betaine hcl for the stomach acid to make sure I have enough, this makes a huge difference to my overall symptoms but it's never fully gone away, usually in the evenings after dinner. Haven't taken antacids for a long time but when I was younger I was put on ranatidine for years which I think ultimately damaged my stomach a lot further.

To everyone who read and replied to this thread, I wanted to post an update. This is actually a copy and paste to goldlion's reply but if it's missed I shall put it here as well:

"I have to say though, and I've been meaning to post an update, stopping the B-Complex has done me a world of good. My theory is that I had initially felt great when I first started taking the B12, but a week after stopping (following sickness which I thought was caused by the B12) my body started to scream for more which is when I went downhill. It took me a while to start taking them again and when I eventually did I threw in the B-Complex too but things got considerably worse. I decided not to take it on Sunday morning, haven't since, but continued with the B12. By Sunday afternoon I felt considerably calmer and less emotional. Monday was the best I had felt in months, huge surge in energy, clear headed and the heavy blanket of depression had been thrown off my back. I even went out for a 6 hour hike in the Lake District. Today was a little bit iffy in the early afternoon, but I attribute that to being out in the sun too long yesterday and not having drunk anywhere near enough water before going out for another hike. Overall though, I feel totally reinvigorated and for that I am very lucky. I very much hope you find some answers and eventually start to feel much better and thank you again. All the best and good health.

"

I might try a different B complex in the future to see if it was just a reaction to Jarrow's but until then I'm going to enjoy every second I can get of feeling good!

Thank you all for your kind words and advice

Conor

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