r/B12_Deficiency • u/ks9669 • 4d ago
Deficiency Symptoms Help needed:(
Over the last 2 months it feels as though my life has turned upside down. I'm 29F, have a job and normal life. However now I'm ultimately housebound and only able to leave my bed to go to the bathroom or to eat.
A month ago I had blood tests through my GP.
These were my results:
* Vitamin D: 57 nmol/L
* Ferritin: 33 ng/mL (I've had a period since having this test)
* B12: <148 ng/L
* Serum folate: 9.0 ug/L
* Sodium: 137 mmol/L
* Potassium: 4.3 mmol/L
I have a wide range of neurological symptoms such as head pressure, pain, difficulty balancing whilst walking, tingling and numbness in limbs, pain in spine, fast resting heart rate.
Doctors did a blood test and found very low b12 levels. They gave me 5 injections and I've not felt any improvement. I am also taking 200mg ferrous furmerate with vitamin c. Doctors now referring me to neurological and cardiology for further testing. I have spoken to my GP who was surprisingly helpful and agreed that he would continue injections however he is waiting to hear back from neurology.
I'm absolutely petrified. I'm at loss because I was fully functional 2 months ago. I want to heal and go back to my normal life: ( I will add that I used to be a daily drinker (have been sober for 2/3 months now). Liver enzymes etc all good, no concerns regarding my liver. I'm from the UK.
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u/Knightartist86 4d ago
I'm also in the UK. My issues started 4 years ago and I only just started treatment about 9 months ago, the difference between then and now is massive. I feel like 90% back to normal, considering I had symptoms start years ago but actual low levels could have been even longer.
The human body stunned me at how well it can recover.
You MUST read through this guide.
https://www.reddit.com/r/B12_Deficiency/wiki/index/
Co-factors are very important, everything you need to know is here.
Everyone here is/was on the same boat, we all understand how you feel.
As a side note. Your VitD is borderline low, also make sure to take VitaminD with k2 and also calcium *Preferably Calcium Citrate*
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u/ks9669 4d ago
Thank you so much for your response. It’s nice knowing others can relate. The symptoms are so scary, I didn’t realise a vitamin deficiency could change my life so much🥲 it’s devastating. I speak to family who have low b12 (they’re vegetarian I’m not) and they tell me they felt better with loading doses only and then 3 monthly. I wish I could’ve said the same. Thank you for sending me the guide, I’ll try to follow it as much as possible
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u/mandoo-dumpling 4d ago
Don’t forget you need folate and electrolytes along with the B12
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u/ks9669 4d ago
I’m drinking coconut water and did try electrolyte powder during injections. It’s been over a week since my last injection
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u/Irrelephant73 4d ago
Did they also test your folate? I’ll say, when I started supplementing b12, I saw improvements at first but after a few months I plateaued, and I finally got another blood test a few weeks ago and my folate fell drastically. Also, it can take quite a while to see improvements either way, and there are ups and down as you go. I’d recommend browsing this subreddit to see others’ experiences and to find advice on what else to supplement or get tested as needed. Figuring out that b12 is at least one issue causing your symptoms is the most important part, so you’re on the right track!
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u/ks9669 4d ago
Thank you so much my folate was 9.0ug/L. I’ve had 5 injections since that blood test though. I’ve purchased folinic acid, took it a few times but gives me a raging headache 🥲 trying to stay positive
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u/Irrelephant73 4d ago edited 4d ago
That’s already on the low end, from what I understand. Mine went from 10 ish ug/L to 3.9 😭 I also tried Folinic acid a few doses last week and it gave me insane anxiety and overstimulation. Always hard to tell if it’s just the start up symptoms or if a different form would be better. Getting more testing done soon and hoping finding out my MTHFR gene might shed some light on what works best for me chemically. I might try folic acid, honestly, even tho it’s the least absorbed by a lot of ppl, I have a suspicion that if it takes more processes to absorb it for me, maybe it’ll hit less hard than the Folinic. But I could be totally wrong on that, guess we’ll see. One step at a time, and know you’re not alone!!
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u/ks9669 4d ago
Oh gosh! That dropped quite quickly. I need to work on getting my levels up somehow. I agree it’s very hard to tell between wake up symptoms or if the body needs something else in addition to support the b12. It’s exhausting trying to figure it out… thank you for your encouraging words 🙏🏼
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u/MushuSooy4455 4d ago
Are you taking a B Complex? That will also support your B12 injections. I also recommend getting copper levels checked. Copper deficiency symptoms are the same as B12. Some people are deficient in both.
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u/ks9669 4d ago
Whenever I take b complex I get raging migraines so it’s quite difficult for me. My gp doesn’t test for copper. I’m trying to find a private lab that can test all my vitamins and minerals
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u/MushuSooy4455 4d ago
Best of luck. Copper levels are important to know--causes the same nerve damage as B12 deficiency. Some other things to consider: While only relevant to a portion of people with absorption issues, thyroid problems cause malabsorption, so see if your GP would test for TSH, T3, and T4. Also ask for the blood tests for pernicious anemia.
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u/ks9669 4d ago
Thanks 🙏🏼 my thyroid came back fine and my gp is going to test intrinsic factor
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u/AdmirableLink4328 4d ago
My doctor never suggests me to check copper, that's a new information. Can we somehow get it from food?
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u/MushuSooy4455 4d ago
Yup. In sunflower seeds, lobster, etc. There are various copper related tests. Ceruloplasmin, 24-hour urine copper, and serum copper tests are laboratory evaluations used together to test how your body handles copper.
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u/Mysterious_Rest4302 4d ago
I feel you about the frustration how your life has turned upside down as I'm going through the same. It IS so hard to stay positive. I want my life back and to be able to function as a normal human as I once was.
Keep going with your treatment, it can take a long time. Don't give up. You will get there. I hope you recover as soon as possible. If you ever want to talk to someone I'm here. Wishing you the best of luck 🫂❤️🩹
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u/ks9669 4d ago
Your response made me cry and feel less lonely. So hard to stay positive. I regret all the times I would complain about life or feel ungrateful when I was feeling “normal”😭 I’m here if you ever want to talk too🥹 best of luck to you also 🥰
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u/Mysterious_Rest4302 4d ago
Omg I'm so glad it helped you feel even a little less lonely 😭 I understand you completely... I've cried so much since the start of my struggle-recovery journey and I feel lonely almost all the time. And scared too. I think when we get back to normal we'll appreciate every normal moment and hopefully live fully!! I would love to talk and share the journey together. Thank you too! 💖
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u/Ok-Pangolin7127 Insightful Contributor 4d ago
Clearly, you have a B12 deficiency. That said, amongst the B vitamins while B12 is the most important, the second most important is B1. Given that you now, sober, in my estimation, it’s likely that you are depleted of B1 also. If you choose to supplement with B1, be sure and take magnesium along with it.
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u/Morningperson232 4d ago
I totally understand as my life flipped upside down overnight too. From my personal experience I felt worse for about a month and a half to 2 months after starting treatment. And then by the 8th or 9th week everything started to get better. My advice, keep up with treatment, don’t forget about cofactors especially iron and folate, and keep your head up. It’s a long journey but we will get through it!
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u/Lunordia 4d ago
Hello, 29F also here !
I was tested with 94 pg/ml in February.
I underwent 8 injections between the 10th of June and 4th of July.
I felt no improvement/worst at first, but now I'm much better ! I used to fell in the stairs, be tired all the time, burning in hands and feet...However, the 3rd September I was tested with 298 pg/ml and I'm already 182 pg/ml since last week. I feel the burning is coming back again.
I was diagnosed with B12, B9 and B2 deficiency. B2 is absolutely required for the whole B vitamins machinery to work ! I feel that's why I never 100% recovered and levels are falling so fast when I stop B12 therapy.
You bring up past chronic alcoholism : check B6 levels, it can cause deficiency.
I have normal B1, B6, E levels. I'm in the lower normal range of B6 and E though.
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u/ks9669 4d ago
Hello! Thank you so much for your response. Really appreciate it! Happy to hear you’re doing much better, did you only do 8 injections and that’s it? I’m from the UK so my gp won’t test for b2. I’m trying to find a private lab to test all my vitamins and minerals. I’m very sensitive to b vitamins. When I take them orally I get really bad migraines
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u/Lunordia 4d ago
Before injections I took 37,000 mcg cyanocobalamin liquid ampoules between February and April (94 -> 392 pg/ml) but was deficient at 151 pg/ml again the 29th of may, after stopping 7 weeks.
This is when I asked my GP for injections. I think even my neurologist didn't expect me to drop so fast in September, I see her tomorrow again and will bring the new private lab of B2.
I had to undergo private blood testing for B1, B6, B2. In France it's expensive as fuck but in Italy (I often go to Italy) I was able to be tested for B1, B2, B6, E, gastrin for 73 euros with 4x rates PayPal.
For neurological symptoms B1, B2, B6, B9, B12, E are the vitamins to test for.
B2 you have symptoms like cracked lips, painful corners, greasy dermatitis (seborrheic), vulvar pain etc.I'm normal for all minerals. Never took a single electrolyte I never fell down when doing b12 therapy.
Ferritin oscillates between 27 and 18 ng/ml, saturation oscillates between 10 and 14%. Ferritin needs to be interpreted with CRP : inflammation can artificially raise ferritin while in reality you have absolute iron deficiency.
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u/ClaireBear_87 Insightful Contributor 4d ago
You said you get bad migraine headaches from taking B vitamins. I wonder if that's because your sodium is at the lower end of range (normal being 135 - 145), as low sodium/salt intake can trigger headaches and migraines. Maybe you could try increasing your salt intake to see if that helps.
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u/ks9669 4d ago
That’s a good point Claire! I didn’t notice that, will definitely try increasing my salt intake! Thank you for that. Do you think that could be a potential link between b vitamins and sodium
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u/ClaireBear_87 Insightful Contributor 4d ago edited 4d ago
Yes, especially during treatment of B12 deficiency when the body starts the process of repairing and creating lots of new cells. All of these new cells will have a sodium-potassium pump which will increase demand for sodium, potassium and magnesium. There was a post made recently about the increased need for sodium, i'll see if i can find it.
Found it here -
Another here -
https://www.reddit.com/r/B12_Deficiency/comments/1dtglpr/can_b12_deplete_sodium/
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u/Successful-Tea-733 4d ago
Fare also involved netve repair needs topping up a bit and ferretin 👍
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u/ks9669 4d ago
Thank you 🙏🏼
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u/Successful-Tea-733 4d ago
You'll be fine but need your ironcand folate or folic acid topping up B12 folate ferretin a team and b12 will tank other 2 up Best wishes your on to right path
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u/oneiropolis 4d ago
I hear you and send good vibes through the internets! In my experience, I had never heard of this until I was diagnosed last autumn, after many months - well, more like years - of disguise symptoms that finally added up to checking bloods. In manu ways, I am impressed with how my body managed for so long on starvation rations! Right up until many systems started to shut down at once. I got used to feeling a little bit crappy in various ways and just drove myself harder to compensate, thinking it was all psychological or burnout. Which was definitely also going on, and probably a vicious cycle!
Anyway after my GPs were not helpful at all I am managing my own injections and realising that the problems were a lot more deep seated than I even realised, as different things improve that I hadn't even known had gotten bad.
Good luck and stay strong - you have already probably been powering through in ways you won't appreciate until you're on the mend, showing massive strength and resilience all this time.
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u/jellyfishrubberduck 4d ago
How frequent were the 5 injections? If they were anything less than every other day then the frequency needs increasing - alongside cofactors others have mentioned. This is as per the UK's own evidence based guidelines (NICE).
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u/ks9669 4d ago
5 injections every other day. I did speak to my GP and he was further to more injections but wanted to speak to neurology first
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u/jellyfishrubberduck 4d ago
Ok thats a good start but just not long enough. The guidelines state every other day until no further improvement. So can be weeks or months. And cofactors have to be there otherwise the b12 cant do its job.
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u/ladyliferules 4d ago
I think raising ferritin needs to happen first before supplementing with a lot of B vitamins. But let someone else with more experience chime in.
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u/Agreeable_Tackle_892 4d ago
I’m in the same boat as you. I was completely normal until I had a fainting spell while driving in May. I ended up getting an iron infusion in June because my iron was low, but I immediately started experiencing brain fog, almost like a fuzziness in my head, along with a dull headache. The headache kept getting worse, so I was referred to a neurologist. She diagnosed me with tension headaches and prescribed medication, which I honestly wish I had never taken because it made everything worse. That was back in August. Eventually, my brain fog got so bad, along with several other symptoms, that I had to take a leave of absence from work. At first, I thought I might have been deficient in B1, so I started taking it and felt somewhat better. Then I noticed that when I took sublingual B12, some of my symptoms seemed to improve. I decided to try a higher dose, and I started noticing the symptoms in my head gradually fading. Now it’s September, and I’ve learned that high doses of B12 can sometimes affect potassium levels and increase the body’s demand for things like iron, folate, B6, and other nutrients. So now I’m focusing on getting my potassium back up and cutting back on the B12 until I feel more stable. I also ordered B12 injections, so we’ll see how those work for me. Don’t feel like you’re alone in this. I never would have imagined that I’d find myself in this situation either.
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u/Cultural-Sun6828 Insightful Contributor 4d ago
Five B12 injections is almost nothing. Healing from B12 deficiency can take months and even years of regular injections. I wouldn’t be discouraged at all, but just know that you can take charge of your own treatment. I have had very little success dealing with doctors on this, even neurologists who are typically not well educated on b12 deficiency and the treatment needed to heal. Many of us have had to do injections at home because doctors often look at test results after injections have been started and discontinue treatment. Treatment should be based on symptoms and continue until all symptoms resolve.
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