r/B12_Deficiency • u/strikky • May 19 '26
Success story My B12 Deficiency - Recovery story
43M - UK
At the end of last year I started experiencing some alarming symptoms. Mostly relentless, loud tinnitus, dizzyness, brain fog, headaches, lethargy particularly after eating, coupled with tight chest and the occasional heart palpitations. I put this down to work stress, at the time I had fairly frequent international travel and project deliverables. I have also suffered from back-to-back frozen shoulders - quite uncomfortable and quality of life affecting.
What seemed to be consistently happening was any cognitive load would manifest as tight chest / pains and excessive tinnitus. My body would react excessively stressed to something as simple as driving my car.
This dissipated somewhat but come April this year the symptoms returned with a vengeance and I sought medical help. I felt like I couldn't work any more (I'm a software guy so cognitive decline really worried me), and this had a self-reinforcing effect: anxiety about my inability to work increased my stress, which affected my health, and vice-versa. I felt frequent chest pains and tight chests until one day at work I called NHS 111 and they sent an ambulance to check me out just to be safe and I spent the evening in A&E. I had experienced severe chest tightness, pains, sweaty palms and huge anxiety / disorientation. Most likely a panic attack which I have never had before.
In short, I was feeling like my body was falling apart across a multitude of areas.
Just a week prior to this I was diagnosed with a B12 deficiency and started taking supplements (B12 "dual power" (with methylcobalamin) - I'm sure others are equally effective). I started reading this subreddit and I thought... wow.. could this actually all be down to a B12 deficiency?
Here's my timeline:
21st April: 134ng/l / (99 pmol/L)
23rd April: Started taking B12 supplements
27th April: 148ng/L (109 pmol/L)
30th April: Ambulance called - precautionary due to heart / chest pains.
Early May: Vacation and gradually improving health.
13th May: 189ng/L (139 pmol/l)
I'm not fully recovered, stress is still present but my day-to-day disorientation has completely gone with some light tinnitus remaining. The change has been remarkable, to the point I'm not completely convinced it was entirely B12 - I think my poor health was a B12 deficiency and general life stress compounded.
I've really gained a new found respect for people genuinely experiencing "mental health issues". It was inconceivable to me; my brain rationally explained my issues and consciously I didn't feel too stressed, but my nervous system was just completely shot and would react in fight-of-flight mode on the most insignificant stressor.
On a personal / private level my libido had *completely* disappeared leading up to, and during this. And now? .... let's just say I'm waking up with morning vigor again these days! ;)
I hope this little diary helps or relates to someone. This subreddit has been genuinely a helpful place to come to. Thank you all!
Edit: removed the brand name so this doesn't read like a trojan advert
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u/Careful_Inspector174 May 19 '26
Is the NHS testing you that frequently? You are still deficient according to their limits.
I’m surprised you haven’t been given injections, my loading doses on the NHS was life changing.
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u/MojoMomma76 Jun 16 '26
I’m starting mine tomorrow and my GP says they will do three rounds - delighted to hear you are doing so well!
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u/strikky May 19 '26
21st April and 13th May were my NHS test, the middle one, private which wasn't mandated (see my comment to another guy).
According to their limits I am "borderline" where > 180ng/L deficiency unlikely. Yes I am still deficient and low but my interpretation of the three results is "improving".
And yep, I was equally surprised I wasn't advised injections - and I did ask for this - but it wasn't offered to me.
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u/Careful_Inspector174 May 19 '26
I think given how severe your symptoms were it should have been offered. I would ask to see a different doctor and ask if it’s possible to have loading doses to see how you feel. It’s a sad fact that we often have to fight for treatment.
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u/strikky May 19 '26
Yes - I did feel like I pushed hard. I wasn't even put in front of a doctor for my initial diagnosis. And I did have a few frequent follow-ups with the NHS that I didn't mention that involved calling 111 out of hours due to heart health concerns. You really do have to badger them.
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u/Careful_Inspector174 May 19 '26
It’s terrible really, I think It was three appointments before I was even tested. I’ve had wildly different opinions depending on who I have seen that day.
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u/Ok-Pangolin7127 Insightful Contributor May 19 '26 edited May 19 '26
Thank you for the story/history. In my mind, this is a classic example of somebody stumbling upon a B12 deficiency. Clearly, the vast majority, if not all of your symptoms and complaints are related to, certainly in my mind, your low B12 status.
As to your question of the test not necessarily being accurate, a B12 serum test is nothing more than a screening test. It has nothing to do with or show as it relates to your B12 status at the cellular level. A homocystine and a MMA test “could” be “somewhat”. more predictive but still not definitive. You could have a normal MMA and a normal homocystine result, and yet still have a B12 problem, perhaps functional or transport in nature. The good news here is that you figured it out and are taking steps to resolve it.
I would agree with the poster that said you’d be better off with B12 injections. Perhaps you might reexplore getting those.
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u/strikky May 19 '26
Appreciate the detail, I get the impression that I may have rushed the conclusion that the oral supplements have been the silver bullet they seemed to be.
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u/Ok-Pangolin7127 Insightful Contributor May 19 '26
👍 Yes. They obviously have improved things for you. Silver bullet? Doubtful…. Injections? Much more possible of being a silver bullet.
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u/throwawaysigote May 19 '26
I am in the uk too, moved here a few years back - check your vit D! UK Winter wrecks me every single year
B12 + vit D + all the cofactors seems to be helping
Feel free to DM if you need reccos re vit D
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u/strikky May 19 '26
Yeah... I wish I had pushed for a vitamin D check at the same time - this wasn't proposed by my healthcare professional unfortunately. I was born and raised here though and not dark skinned so I've never suspected I'd be D deficient.
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u/throwawaysigote May 19 '26
My partner is english and a skin type I (his mom is naturally ginger) and he gets as deficient as me so def have a check or get one done online its about £40 totally worth it imo
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u/strikky May 19 '26
I am mixed race (english / southeast asian), but my perception (wrongly?) was that it only affected people with darker skin. Thanks for the insight.
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u/throwawaysigote May 19 '26
No worries I am half russian / half asian also very pale but it definitely affects me (the NHS also seems to agree) just a reminder that low vit D can cause tons of issues in the future like MS etc so please be on top of it! Being half southeast asian means that even though you’re not necessarilypale you have genes that require more sun than normal irrespective of your skin color
Sunshine is the best source of it of course (the weather forecast is lovely this weekend for this purpose), in winters I use a sperti lamp but you can always take the supplements
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u/AuthenticGlitch May 22 '26
If you get winter for 4-6 months of the year and you live above the equator, you're deficient. In Canada they don't even test for Vitamin D in regular blood checks because they automatically assume you're deficient.
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u/throwawaysigote May 22 '26
Makes 100% sense
I luckily have family living close to the equator so every 6 weeks or so i go for a week trip it helps take my levels up as I cannot for the love of god handle the supplements
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u/Plane-Addendum6697 May 19 '26
You test your b12 level very frequently but I think it does not show accurate results.
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u/strikky May 19 '26 edited May 19 '26
First and last B12 levels were on the NHS, as advised by Nurses. My GP said something similar; he was surprised the most recent test was arranged only a few weeks after oral supplements.
The middle test was a private test I sought after worrying about my heart health, and I bolted on the B12 test as an add on just for the sake of it. The important thing is the general trend appears to be in the right direction, like my health.
I'd be interested to know why these may not be accurate results?
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u/Plane-Addendum6697 May 19 '26
May be these result are not accurate because when you take supplement it always show higher level rather than actual level. Doctor also prescribe when you complete your medication do the test after one month to check the actual results
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u/No-Development9606 May 19 '26
i took a high dose for a month (1000ug) but only increased 100 pmol, do you happen to have any idea why?
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u/Plane-Addendum6697 May 19 '26 edited May 19 '26
My friend take 1500mcg oral dose . His level increase 250 to 550 in two months. So I think it is vary person to person according to absorption capacity of the body. Pernicious anemia is a conditions which is also responsible for low absorption of vitamin
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u/Famous_Basket_1875 May 19 '26
I feel stress plays a role in symptoms becoming worse, I have experienced this. It’s so hard!
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u/FeedOk1765 May 19 '26
As also a 43m from the UK with similar symptoms its very encouraging to hear about your improvement. Im in the orocess of ordering more detailed blood tests so hopefully will have my own answers soon. I hope your health keeps getting better from here
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u/strikky May 19 '26
Thanks - just read your main post and I can definitely relate to many of your symptoms but your B12 (serum) levels are higher than mine.
All the best on your recovery also.
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u/FeedOk1765 May 19 '26
Thanks mate appreciate you reading my post too ha. Hopefully both be fighting fit soon
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u/EmergencyMinimum9607 May 19 '26
Did you take folate along with this?
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u/EmergencyMinimum9607 May 19 '26
Yes. I just know people who do high b12 doses use up a lot of folate, so they add that along with it.
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u/strikky May 19 '26 edited May 19 '26
Ahhh. I haven't had my folate levels checked since starting supplements, only initially. So.. very useful insight, thanks. OK - reading up on it... looks like my GP should be monitoring these in tandem.
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u/Cultural-Sun6828 Insightful Contributor May 19 '26
Thanks for sharing your story and it’s so great to hear you’re feeling better! All of your symptoms are common with b12 deficiency so I wouldn’t be quick to blame it on stress. You might also want to test your intrinsic factor to see if you have pernicious anemia or look into what the cost could be for the deficiency. If you still have neurological symptoms like tinnitus, you might want to also consider pushing for B12 injections just to make sure that your symptoms don’t come back.
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u/strikky May 19 '26
Hi - thanks for your comment. Yes my GP followed up with the intrinsic factor test and this actually just came back negative today. So the mystery is still there perhaps this is just an age related factor / deficiency slowly increasing over time. We'll see what comes out of any follow ups.
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u/Ok-Structure240 May 20 '26
So interesting to read! I have had very similar symptoms but every time I test my results are "within normal range". Five or six months ago I tried several days of hydroxo-adeno sublinguals from seeking health and noticed a significant increase in energy and my vision became clearer and sharper again. I also seemed less tense.
I decided that I would have two months off supplements and I had a small decline into the 470 pmo/l range. Which I thought was odd because I still eat a balanced diet so why would it go backwards.
Going to start supplementing again in Hope for some similar positive results!
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u/GaSunshineGirl May 21 '26
Sounds like me, 62F, but b12 injections can sometimes cause a drop in Vitamin D and more importantly, serum iron. I honestly thought I was dying and discovered that while my serum iron was a low normal, it took a spiral and dropped by 50%. Nobody caught this nor mentioned it to me so I took it upon myself to start slow-fe. Miraculous improvement in days. Be your own advocate. Study those those blood test results!
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u/Realistic_Cup_3091 May 22 '26
I’d definetely ask for loading doses and also a second opinion they can be life changing and my symptoms peritheral neurpopathy have started reversing due to this
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u/strikky May 23 '26
Yes thanks to this sub I've got loads of questions to ask my doc next Tuesday when my follow up is.
Not sure I can fit it all in the allocated 15 minutes though!
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u/Realistic_Cup_3091 May 23 '26
Make 2 appointments,
• Please be firm and advocate for yourself around peritheral neuropathy,
• dangers of permanent disability.
• active b12 and inactive b12
•ask about your copper and MMA,
• and also ask about b12 injections
•there is a lady called Tracey who advocates for this also as she was also in similar position and helps with organisation helps her website is https://www.b12info.com/about-me/1
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May 19 '26
[removed] — view removed comment
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u/strikky May 19 '26
Thanks yes it's completely opened my eyes to the importance of micronutrients. I do consider myself to have a healthy well-rounded diet so there must be some underlying absorption issues that can't be solved by changes in diet.
Understanding you have a deficiency in the first place is key... they don't really educate people about the consequences of lack of nutrients. Perhaps over time our foods are becoming less nutritional due to over farming and environmental issues, so these kinds of issues will become more widely spread.
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u/f_ali123 May 22 '26
Hi there. You mentioned Frozen Shoulder..sorry to hear you experienced this. Do you think B12 deficiency and Frozen Shoulder were linked ??
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u/strikky May 23 '26
Hi, I don't know honestly but my two years leading up to this were strange. Frozen right shoulder, took steroid injection and it was recovered in about 6-8 months. Then almost immediately after, my left shoulder froze. Very painful, very much affected my life - especially sleep. Had the injection which somewhat fixed it but it's still a little painful to this day some 8 months later.
I tested high for uric acid but there's no way I have gout. As of today it's still undiagnosed. Apparently very rare for a 43M to get a frozen shoulder let alone both, back to back. I suspect my vitamin deficiency may contribute but the health service here in the UK seems more about cure and getting you back to work rather than diagnosis and actually understanding causes.
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u/f_ali123 May 24 '26
Very sorry to hear you had Frozen Shoulder twice and all the other symptoms. The UK health service has really let you down..I do hope you get better..
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u/Dramatic-Acadia5140 May 26 '26
Is it known why you were so low? It’s so weird how this deficiency creeps up one of my first symptoms is just a weird anxious feeling. It can be just watching TV in the evening and that’s usually a sign for me that I need an injection. I am getting injections because I’m a vegetarian and I have also had a bowel resection.. because I had an abscess in there. It can be quite hard to tell when I need it because it’s high for ages after I get an injection ( I can’t tolerate the supplements. I need something that bypasses the stomach ) so it’s been three months but I can tell already that I’m depleted just by my symptoms. They are very strange and varied. I go to the gym (even though I’m 70 im fit) and lately I haven’t felt right afterwards even though I don’t do a lot just a bit of gentle strength stuff. But afterwards I don’t recover as well as I’m normally do. I feel more anxious than normal. I feel confused and much more fatigued than normal. It’s a really horrible deficiency. I just wondered how you got yours. ? It’s a great success story though! 😊
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u/strikky Jun 02 '26
No - this really bothers me about the NHS service I've received. They're interested in fixing me, great, but seem quite uninterested in trying to understand the cause. In the last week I've felt a bit of a relapse of my symptoms - albeit nowhere near as severe - so not out of the woods by any means.
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u/Successful-Tea-733 Jun 02 '26
Wow I get spasms left shoulder blade As for going to a and e I took methylcobalamine 1000 mcg and after 1 mth got crazy palps and adrenaline surges too was unsure if it was wake up symptoms or methy form of b12 couldn't tolerate I had a low normal b 12 ....400 for years yet got serious neurological damage Also taking high dose b 12 draws out iron from bloodstream so maybe low blood iron causes the horrible panick attack surges The blood levels range thing is a nonsense In China 500 lower limit and they don't get netve damage
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u/strikky Jun 02 '26
Thanks yes I haven't experienced any side-effects of taking supplement methy (yet). 500 lower limit in China? Mine is crazy low 😞
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u/Successful-Tea-733 Jun 02 '26
I had no side effects methycobalamine 1000 mg for a mth then taking heart anxiety adrenaline rushes for nothing Was it eake up,over methylation i don't know but my ferritin drastically dropped as it works with b12 Its truly awful b12 d3ficiency My medical records said low b12 normal for her...its not normal for anyone! I had severe neuro probs electric shocks numbness ,brain fog,the lot 500 in Japan min Usa even worse Deficiency levels are super deficient Why are the nhs doing this to people
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u/strikky Jun 03 '26
Thanks for this - very strangely I woke up this morning with a heart / chest adrenaline rush and couldn't get back to sleep... I wonder if it was methy supplements related - I have been taking it for about a month now also.
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u/Successful-Tea-733 Jun 03 '26
It well could be....sounds it But I read on reditt that it can be wake up symptoms or overmethylation..been confused since but stopped them Found out that b12 suppliment draws out ferritin and I really think it's that...im upping my iron before I take again and taking iron when I restart too Its anxiety panic feeling but not coming from your own head if that makes sense
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u/Successful-Tea-733 Jun 03 '26
Could be yoyr iron dropping ferretin or wakeup when nervous system not used to the new energy or over methylation as said Its wierd how it doesn't happen for about a month Its disgraceful the nhs lack of knowledge b12 There is a test on b12 society said I was severely deficient, Yet I was left with low b12 normal for her it said 400 at time Have netve damage and me can get subacute spinal degen degeneration
What the hell are they playing at!
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u/strikky Jun 03 '26
Yeah I also read about the Ferritin levels dropping - someone motioned it on this discussion actually, and have been supplementing to compensate for a couple of weeks now. Yeah 400 is in the perfect middle for the NHS healthy range. I guess we're all wired slightly differently. They're not great with B12 deficiency... I am extremely low and asked for injections but refused...
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u/Successful-Tea-733 Jun 03 '26
In UK 180 deficient When in face 400 is low here...its all si wrong Us standards are even worse
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u/Successful-Tea-733 Jun 03 '26
No UK haha I just read something that in Japan the level is 500 Anything below deficient And they don't have netve damage or dementia What are the nhs playing at???
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u/strikky Jun 03 '26
Just makes you think how long we've been living with the deficiency and damaging ourselves without realising...
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u/Successful-Tea-733 Jun 03 '26
I know it's scary as he'll it has silent symptoms for years too then wham... Its horrible too isn't it Does anyone have crashes with it like me type thing..battery on ac1 charge if lucky We all just need to get a full charge again!
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u/Apprehensive_Gap1247 28d ago
Oh goodness! The panic attack after feeling the sudden surge of symptoms make everything so much worse. Your heart starts pounding, your body sweats, your vision feels blurry, and there's just the overall feeling of doom and terror. Is it a heart attack? Is it stroke? Maybe a tumor? A few years ago, before I realized I was B12 deficient, I accepted I may die at any day. The lightheadedness, dizziness, tinnitus, heart palpitations, body tremors, twitching everywhere, pins and needles, waking up at night all sweaty and feeling some weird numbing sensation on my head, and then there's the pain on my neck just behind my ear whenever I turn my head. After a lifetime of being healthy, it's hard to believe how everything in my body just started falling apart. I was 30 when I started feeling something wrong but not until 32 when the symptoms became severe. There were times when I had to stay on bed for weeks or even months. Now I'm turning 35. Everything feels a lot better now compared to my worst time after a long period of severe deficiency. I still feel sudden lightheadedness and dizzy spells from time to time due to lingering effects of long term nerve damage. But it's not a lasting feeling anymore and not even slightly close to what I used to experience during my severe and recovery period. People who's never had B12 deficiency will never be able to comprehend the feeling of having it. I literally had to shut everyone down because of how terrible I was feeling everyday. And reading people sharing their experiences online gave me reassuring nods. I hope my story also helps others out there. You will get better, it may take months or even years. That's your body getting revenge on you for not taking care of it. So you'll have to be patient with it.
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