Before I get into my current state, I'd like to give you a bit of a backstory. Sorry for the length, but hopefully it'll give you an idea of how horrible b12 deficiency has affected my life and maybe there's someone out there with a similar story.
I've been initially diagnosed as b12 and iron deficient in Jan/Feb 2016 (but wasn't diagnosed as anemic) and was put on weekly iron infusions and B-12 injections for about 5 weeks. I started to feel much better and I've been able to keep my iron levels in the normal range overtime, but my b12 has continued to drop. About a year later, I started having all types of awful, severe symptoms, such as electric body shocks, pains up and down my left arm, pins & needles in the feet, buzzing/vibration sensations on the bottom of my right foot, headaches in different spots, weird headaches that felt like a burning sensation or as if blood was swishing around in my head, or as if my brain was being fried (hard to explain), brain fog, muscle/nerve spasms in head and other parts of my body, lightheaded/dizziness (sometimes felt like I was walking like a crab when moving forward), tinnitus, slight pain behind the eye, off-kiltered and unbalanced, anxiety attacks, etc.
One day at work, I was at wits end. I was walking to pick up food for lunch and I felt like I was going to faint. I called my doc's office and begged for an injection, to which then I was recommended to go to the on-site urgent care first and then get a blood test after before they were allowed to put in the b12 order. So I went to urgent care, EKG and everything was fine, but my b12 was a low 57 (normal range is 193-986 where I live). They sent me upstairs to my doc's office, got my shot, and was put on monthly injections.
I've felt so much better after each injection, but about 3 weeks after I start feeling the symptoms again, especially the weird stuff in my head (like something living up there lol), brain fog, spasms, dizziness, headaches. One time I scheduled a shot about 4 days before the month was up and the nurse was about to give it to me, but my doc stopped her and told her I'll have to wait til next week. (Mind you I was feeling awful at this point, but bit the bullet and waited a week).
It's been about a year since I started the monthly injections, and for the past fews months I've took it upon myself to space it out to 5 weeks and then the last month was 6 weeks (which I probably shouldn't have done). The last injection I had 4 days ago, and although some of my symptoms improved, my headaches and brain fog got worse. I still get little bouts of dizziness too. It also seems to have led to have affected my ear and neck, slight ear aches (not painful though), and itching deep in my right ear (can't be reached if I try dig and scratch). This is the first time I haven't had almost 100% immediate relief after the injection, so now I'm worried. Could it be that I waited to long between injections, and now my body is going in overdrive to try to restore the b12? Sometimes my anxiety has me thinking it could be something else, but it def feels like b12 issues b/c I'm also still having some of the other symptoms as well (electric shocks, spasms, etc).
I forgot to mention, the reason why I waited so long for my last injection was b/c I had my level checked right after the previous injection and it showed >6000 pg/ml, so I got scared and thought I had too much in my system. I was informed by another doc not to worry b/c I just had the shot the same day. That was the injection I had in early August. For my September injection (which I had a few days ago), I got my level checked a couple days prior, and it showed a level of 351. It's within the normal range, but still on the lower end of the spectrum. I'm afraid to ask my doctor for more frequent injections, but I'm fearful that despite my level last being showed at 351, I may have permanent damage and may require injections for then rest of my life.
Again, sorry for the long essay, but if anyone can relate, please share your thoughts. I feel so alone in this and I'm so sick and tired of not feeling normal.
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Betterdayz
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the normal range doesn't apply after shots have started - serum tests may be useful for identifying a B12 absorption problem but isn't a test that can be used to manage B12 treatment - no point in having further tests - it isn't something that is recommended in the UK but I'm guessing you aren't based in the UK but in the US.
The only real way of managing levels after loading doses is to go by symptoms.
The symptoms of B12 deficiency overlap with a number of other conditions so would be worth ruling out other vitamin/mineral deficiencies and also worth ruling out thyroid problems.
Thanks for the prompt reply!! I've ruled out that i'm not deficient in any other vitamins, and I haven't been diagnosed with any thyroid issue as well (unless that's something I have to manually ask for?). I have a slew of gastrointestinal issues (diagnosed with severe gastroenteritis and peptic ulcer disease in the past). I also have an abnormal stomach, I was diagnosed as having a stricture. My stomach looks like a narrow tube that connects my esophagus to my intestine. I've had to have routine endoscopies with dilatation; started with the procedures every 2 weeks back in 2013, then to monthly in 2014, and have been having them every 3-6 months for the past 3.5-4 yrs. I've been through 4 gastroenterologists since 2 of them transferred to other hospitals and the other 2 provided poor care. I actually found my initial gastro doc who initiated my procedures and I have an office visit with her on Oct. 24th. I will definitely address these issues with her as I didn't have them at the time she was my doctor.
I'm interested in knowing about the process of being able to self inject in an emergency situation, as I'm sure my primary care physician will be against making my monthly injections more frequent.
B12 injections can be either intramuscular or subcutaneously - SQ can be done with an insulin needle so much easier but most medics seem totally oblivious to this possibility.
Suggest you start another post specifying in the heading what country you are based in asking about sourcing injectable B12 as it varies a lot from country to country.
I too am feeling spaced out, brain fog, extreme dizziness and my existing tinnitus has got worse. The symptom that jumped out at me was the itchy ear. For the past few months my left ear has been so itchy, really deep down where you can't reach, am so tempted to get a knitting needle and have a good scratch but it feels too far in for that. I have asked the dr for antibiotics twice thinking it must be an infection but they haven't worked. I am si daily now in the hopes of an improvement. Life's very unpleasant at the moment. Why can't the medical profession realise how this ruins lives when not properly managed
I can definitely relate to how you're feeling and yes it sucks. I wish there was a diagnostic machine that we can stand inside of that would scan all the issues with our bodies (similar to how they do auto diagnostics) so that we would know how to effectively treat ourselves.
Hopefully there's a shiny bright light at the end of this dark & foggy tunnel.
Personally, your level of 351 is low for a person getting shots. Mine stays around 2000 and I am currently SI every week. I'm in the US.
Unless you luck out, if you are in the US, and find a doctor with some experience with b12d, you won't be able to get shots more than once a month through them. This is a condition that needs to be treated according to symptoms and not a timetable. B12 is water soluble, so don't worry about how high it might get on a test.
I've been through the same symptoms as you, and more. Now that I finally SI weekly, the symptoms are actually improving, albeit slowly, and there are some that may never disappear. How long has it been since symptoms first started?
This is a complex condition, but it can be controlled. Unfortunately, you need to direct your care rather than your doctor. But keep looking for a knowledgeable doctor. They exist, but it can take time to find one.
[My symptoms may have started 40 years ago (falling down stairs), but I wasn't diagnosed until 25 years ago. ]
Thanks for your input. My symptoms usually start after the 3rd week, but it took about 5 weeks for them to start after my August injection (that's why I waited so long). I tried spacing the injections out a little further because I thought maybe I was improving. But for the last week or so, my symptoms have been in overdrive. I can deal with the body shocks and stuff but the headaches and dizziness/fogginess is unbearable. They get really bad at night when I go to bed too.
Did your doc have to approve for you to SI? I'm in the US by the way.
My original doctor set me up to get SI going, including training, but it took years for the nurses to agree to teach me. Then he went out of private practice and the next two doctors actually stopped my shots. My current doctor is fine with SI (he's from Ireland), but I buy my cyano from Canada because I didn't want to pay the prices the pharmacies charge. And even with insurance, getting my shots at the doctor's office is too much.
From personal experience, there are a worsening of symptoms as you're healing, and they won't always be the same ones each time. It also indicates that you need shots more often, not less. When I'm under a lot of stress or more physically active than usual, I should be doing my shot more often than once a week. But I'm slow to change. It's taken me over 20 years to get to once a week!
Don't despair, everything will get better, but it can take time. And symptoms can pop up again if you're stressed, or not eating as well as you should, or other supplements are out of balance. Plus, you can still have other things wrong, like thyroid, or gastrointestinal issues. Even when symptoms lessen, don't stop the shots, not matter what. Don't let anyone tell you your serum b12 is too high. This is a life-long issue; just think of it like having diabetes.
if i were you, i would demand an h pylori breath test, unless you take acid blockers such as pepto, nexium, prilosec, tums, ect.
i had j pylori without the classic symptom of heartburn and im in the US.
my serum iron and iron saturation% were both in range but lower end and my b12 was 169 prior to suppliments. i finally got injections after 2 years of supplimenting didnt help.
only after all that did i demand h pylori testing, just to rule it out, as i figured it would be negative since iron was in range, low but in range. it was positive.
if in us you can get injectiins at weight loss clinics. my b12 kept dropping after injections as testing after 2 weeks i was in 800 and after 4 weeks i would be in 600 range. but i was getting injections every 1-2 weeks between testing times.
your level of 300 a month after injection is too low!!!
I'm taking omeprazole 40mg. Yeah I read about h pylori and believe I was tested for that in the past. Actually the initial cause my stomach issues was a parasite I had back in 2011 that put me in the hospital for a month (lost 50+lbs). I kept getting misdiagnosed with diseases such as Chrohn's, IBS, etc. and overtime I was getting worse and the parasite was doing lots of damage to my organs. I could've died if it wasn't for a colleague noticing my symptoms and suggesting I request to be stool tested for parasites.
My condition is very complicated so I've been through many docs who didn't know how to treat me, but right now I have a great Primary Care & Gastroenterologist who are sensitive to my needs, but i'm not sure my primary care will approve to administer more frequent injections or agree to SI. I will def look into weight loss clinics. Do they need to get approval from your doc? Do I provide them with a printout of my b12 levels? Is it an easy process?
I'm in NY so I'll definitely check to see if there's anything in my area.
if you are taking prilosec for heartburn that is a classic symptom for h pylori.
i would get a blood test done immediately. medication will not effect a blood test but it is lease reliable because their are 3 things that need tested and most only test for 2. i think they are IgA, IgG and IgM.
also b12 injections at a weight loss clinic are super simple.
i think the dr. there spoke to me for 3 min, just to be able to record she had done so. she basically asked if i needed consult for weight loss which i did not. b12 is not considered high risk by any means so they will give to anyone for the money they make off of them.
be sure when you call around to ask if they offer straight b12 injections, not just their mixed injections which they usually call a mic injections. those only have about 300 mcgs of b12 plus other stuff. straight b12 injections have 1000 mcg b12 just like at dr office.
mine are $15 but other places charge $20 and even $25. im in savannah, GA.
and no, they dont want or need your blood tests or anything else.
Just scheduled a consultation with a highly-rated clinic in my area that provides IV Therapy & shots. My appt. is tomorrow. Hopefully it all goes well.
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