Hi super supportive community! I would really, really appreciate your insight please? I'll try and be brief.
I've been tired pretty much all my life - even as a kid could sleep in until midday easily yet still feel tired. I've been veggie since i was about 8, and now at age 26 I also eat almost no dairy and no fish, but a lot of fruit and veg.
Recently i've been more tired than ever before, despite working part time and no longer working out. I used to be able to power through the lethargy and do 12 hour shifts on my feet. Now after a measly 4 hour shift in retail I usually have to have a nap to function. I've also been experiencing occasional dizziness and brain fog. Have taken B12 supplements and felt no difference. I can see now how the tiredness is affecting multiple areas of my life, including my social life. I have plans to move back abroad and train as a professional scuba diver, but don't feel like I could handle that lifestyle right now. I can feel the situation getting me incredibly down.
Doc sent me for blood tests, and I returned today to discuss the results. She told me that everything was normal and she couldn't understand what's going on, so sent me off for more blood tests for 'weird autoimmune' conditions, booked an ECG and an appointment at the general hospital. I asked about my B12 result specifically; she said it was fine and even though she agreed that a 'normal range' can vary from person to person, she can't give me B12 shots because I fall within the average normal range.
After leaving the doctors I had a look through the results myself. I'm no expert but it seems to me that I JUST fall within the average normal range - I really feel like it could be a B12 issue. Does anybody else agree (results in pic) ?
Having been told directly that I won't be given B12 shots, should I try a different doctor? Hold on for what could be 2 months until I've had the new blood results back, ECG and appointment with general hospital? Or just take the plunge and order B12 online, and ask my nurse-in-training sister to inject me (too squeamish to do it myself)?
Any advice/insight/experiences are really, really welcome. Thank you! xoxo
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DogInTheDisco
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I would go back to your GP armed with the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders.
The key points would be
a) serum B12, used as a single measure will miss 25% of people who are B12 deficient.
b) 25% of people who are B12 deficient do not present with macrocytic anaemia.
If you have tried supplements (you don'to say what strength and it would be useful to know) then it's likely that there is an absorption problem going on.
Your GP can access the guidelines through the BNF but they can also be accessed here
It’s not okay, my b12 results were the same as yours, I had neuro problems too, so mri scan confirmed I had sub acute combined degeneration of the spine, which is secondary to PA.
I’d go back to GP, with PA docs, if dr still don’t budge, then buy some hydroxocobalamin from gold pharma & ask your sister to inject you in upper arm (into muscle) with an orange insulin needle (best by far, u can hardly feel it?
Are you getting any tingling or burning skin sensations on your arms or back, pins & needles in your hands & feet at all?
thank you. no tingling or burning fortunately, but am finding myself much less focussed and getting distracted in the middle of simple tasks.
i'm also (to be blunt) incredibly painfully gassy - as of yesterday started drinking apple cider vinegar and hot water before meals to try and increase stomach acidity but no change just yet.
my sister injected me sub cut with 1ml 24 hours ago. I went with sub cut because i'm squeamish around needles and she's trained to do sub cut injections. I know it takes many people longer to feel the effects with SC but i'm not feeling any changes yet. wondering how long I should wait until injecting again...?
Hi, I'm glad you reached out, and hope that the forum can provide helpful answers. From what you share, I agree it would be worth trying a B12 injection and seeing how you feel after that. As long as your sister knows how to do the injection properly, in the muscle. After injections, though, your serum B12 levels may rise, but your symptoms might not immediately improve. It can take time to regain the energy.
Your symptoms match those I've experienced, in my case they are due to pernicious anemia. I had a similar experience with my doctor who thought nothing was wrong with me, even though I was exhausted all the time. I requested a referral to a hematologist who tested me for PA and the test was positive. It was an intrinsic factor antibody test. There's also another test, but I don't recall what it's called. Both are blood tests.
The tests for B12 level don't tell us how much of it is actually active B12, but even then, I'd want to see at least a level of 400; yours is quite low. A couple of other things to consider: on your blood test, do you have a high MCV? Low RBC? Your ferritin looks very much on the low side of "normal;" have you tried iron supplements?
Lastly, diet can play a big role. For me, being vegetarian for 5 years made me feel worse than ever. It may be helpful to consider which foods help you feel your best.
Good luck with everything, hope you feel better soon.
I've also just realised how (sorry to be crude) incredibly gassy I am immediately after eating and am wondering if this is a sign that my stomach acid levels are too low, which would also explain why things such as b12 aren't being processed by my body. As of yesterday I've started drinking apple cider vinegar in water before meals to try and increase acidity.
My sister injected me sub cut with 1ml 24 hours ago. I went with sub cut because i'm squeamish around needles and she's only trained to do sub cut injections at the moment. I know it takes many people longer to feel the effects with SC but i'm not feeling any changes yet. Again, I know it's different for everyone, but I'm wondering how long I should wait until injecting again...?
It's so tricky figuring all of this stuff out without the help of a doctor isn't it, especially as it's different for each individual.
Hi, I too take apple cider vinegar to help with meals, and make a dressing for salad with the vinegar and some olive oil. I also found it helps to eat fruit before or between meals, instead of at the end of a meal.
1 ml is a low dose; it's what I use once every 4 days. Though I'm not a doctor, I believe 1ml every day is fine, even 1ml three times a day. If there is extra, your body will just pee it out. To my knowledge there is no harm caused by too much B12. I know someone who does 5 ml injections of methylcobalamin B12 three times a day; his condition was quite serious, and this regimen helps him stay well.
If your levels have been low for a long time, it can take a while before you start to feel better. It varies with every person. You could also try sublingual methylcobalamin; even if you have absorption problems, some of it will get into your body. I take one on the days when I don't do the injections.
I don't know if this would help you, since it sounds like you're in the UK, but I am working with a wonderful naturopathic doctor in the US. If you'd like I can give you her information. She helped me finally get diagnosed with PA through a hematologist in the US.
Yes I've heard eating anything raw including fruit in the evening is also not great for anybody's digestion, which makes sense!
I think I will leave it a day or two more and go back to my sis for another injection. It'll be easier once I feel comfortable enough to just do it myself.
Would you agree with another helpful commenter that I could benefit from taking folate, iron, vid D, magnesium etc supplements to support the injections? With my possible low stomach acid I'm not sure how well they would be absorbed but if some of you guys think it's worth trying then I will. All of this is made a bit more tricky when bound by a tight budget, but it is my health after all!!
Hi, sorry to reply so late... How are you doing? One important consideration is to see the potency of the B12 you are injecting. Do you know the potency? It would be written on the vial. I have 1.5 ML of methylcobalamin every few days in the potency of 1000 mcg/ML. If the potency is lower I don't see the type of improvement I need.
The supplements can help, if there are signs in your bloodwork that they are needed. My hematologist recommended I take iron due to heavy cycles, and my naturopath recommended magnesium citrate (a product called Perfect Calm), in the evenings, I find it helps with constipation from taking iron. For folate I take a product called Pure Encapsulations B Complex Plus, because it is already methylated. And I take digestive enzymes after every meal. My vitamin D was on the low side of normal, so I also take a daily Vitamin D supplement.
Hope this helps! And I hope you are feeling better.
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