Pernicious Anaemia Society
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Really need advice on self injecting

Hi, I really need advice as I self inject due to the fact that my GP thinks that one injection every 3 months is enough, and that I don't need it anymore as I didn't test positive for intrinsic factor antibody and my levels are okay. What I do know is that my symptoms recur (badly) when I have not had B12 for a long time, but we don't know why I have a problem absorbing. I also have stomach related symptoms, which could be the reason, but getting help and advice from my GP regarding B12 is like banging my head against a wall, so I have given up and now self treat.

in 2011 I was diagnosed with vitamin B12 deficiency, I had every symptom under the sun progressively getting worse, and to be honest my health hadn't been great for a few years. I was given loading doses.

2012: Jan - Apr. Felt amazing

Apr: Had my first 3 monthly, it lasted a few days if that.

May: Learned how to self inject, felt worse before I felt better.

June onwards: Self injected B12 until I felt better, again felt amazing, so continued to inject B12 as and when I needed it. As far as I was concerned problem solved.

2013: Continued self injecting regularly with no problems, however my stomach problems did flare up a couple of times this year (could be underlying reason for not absorbing - Colitis/Chron's/Coeliac?)

2014: Continued self injecting and felt well most of the time

2015: January: Still self injecting

February: Had symptoms worse than when I had B12 deficiency, head pressure, dizziness, muscle weakness, feeling faint etc this went on for about a month and it was really bad. Also had pins and needles in hands like there was something wrong with my cirulation. The worst thing was feeling faint and being unable to think clearly.

March: Stopped injecting B12 as I thought it was side effects from having too much, really scared me, so I stopped.

April - October: Felt a LOT better, in fact felt really well again

October: My B12 defciency symptoms returned so I gave myself loading doses again. Instead of feeling better, I had side effects - head pressure, muscle weakness etc. When I spoke to my GP they just acted like I was really stupid for injecting B12 in the first place (but nothing else works). They think it's migraines, chronic fatigue, anxiety or just all in my mind - it isn't I assure you.

December- Felt a lot better, felt really good again

2016: Jan - May: Felt really well again

May: Symptoms returned. Tried more injections and felt a lot worse.

July - September: Tried injecting again, and felt better.

Tried one injection a month, but one injection wasn't enough to make me feel well, and I had head pressure and actual fainting several times after having an injection. Really suffered for the rest of 2016, but felt a bit better in December after I had a top up of about 4 injections.

2017: Jan - Apr: Loading doses. Felt really well.

Apr- Jun: B12 deficiency symptoms came back but when I tried injecting, I felt worse than I had ever felt in my life!!! Thought I was dying, sorry to be dramatic but I'm not exaggerating.

July - November: Decided to leave it off and felt well for a good six months. Took high dose B12 tablets instead.

November: When my symptoms returned as they always do, I tried patches and a sublingual spray, did nothing, so I tried a one off injection which helped a bit.

December: 2 weeks later my symptoms are back with a vengeance, tried 4 B12 injections and have horrendous side effects including feeling faint and heart palpitations, and now just really do not know what to do or where to turn, as going to my GP is pointless. My folate levels are fine, iron levels on the low side, and I have never tested positive for pottasium deficiency, however my symptoms when I have side effects are similar to that.

I get my health back, and then have it taken from me again and again and it's completely wrecking my life. I don't really want to have to self inject, but I don't want to be ill either, and I don't want these horrendous side effects. I'm in an absolute mess and can't get any help or advice from anywhere.

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Also I worry myself sick over air bubbles in the syringes (I use insulin needles, in my upper thigh). I really have a problem getting them off the syringes, there is always a small air bubble in the top, no matter how much I flick. Any advice on this would also be appreciated.

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Small air bubbles are not a problem. The lungs take them out of the circulation as the blood passes through and you breathe them out. Even a full syringe of air wouldn't kill you, although I wouldn't recommend trying ;)

I find that rotating/tipping the syringe to chase the bubble up and out is better than flicking, which can cause more bubbles than it gets rid of.

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if you are injecting subq the air isn't going to get into your blood stream anyway it is going to go into the layer below your skin and it should just escape from there.

To get the bubbles out of the syringe - hold upright, flick with fore-finger until the bubbles rise to the top of the tube then slowly push the plunger in until the air is expelled.

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Thank you.

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Try taking Folinic acid B9 (not Folic acid)

I have the hereditary thing going on.

I've been taking both for about a year now. Really great combo for the pain and anxiety.

My daughter has been on this combo for 3 months now, she's off her antidepressant medication, left her idiot, new home, raising her 3 sons by herself and has enrolled in college for the new year.

Needless to say she feels great.

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Thanks I will try that. Really good to hear that your daughter is going so well on it. When I was on regular B12 before it gave me a whole new lease of life as well, which is why it has been so frustrating for me to keep on being unwell again.

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Have you considered taking half a dose when you inject? I now am on sublinguals only but when I first got a B12 shot it was too much and so I took half a dose and then even a quarter a dose. The quarter dose shot is what worked for me until I switch to sublinguals. Also are you monitoring your co-factors like magnesium , vitamin D, folic acid? Also are you gluten and grain-free? This scenario has to be so frustrating for you. I do hope that you can find a solution that works.

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Thanks for your response. Sorry I took so long to reply. I probably take half or less a dose most of the time, the amount of B12 I waste trying to flick off air bubbles (as you can see I'm an extremely anxious person to be going through all of this). I do tend to drink a LOT of coconut water, eat bananas and apricots for my pottasium levels when I first go back on B12. They do a renal screen every time I go to my GP in complete panic every few months when I go through this, I have never tested positive for a pottasium deficiency, but I do keep my levels up to be on the safe side. I take folic acid and vitamin D every day.

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Gosh, this is the kind of thing I would worry about with so many people self injecting.... have you actually had private blood tests to go along with these treatment doses?

It doesn’t appear so otherwise you would know if you are overmedicated... I’m not sure how wise it would be to self inject randomly when you haven’t been diagnosed with PA or shown to have an actual absorption problem. I’m not saying that you don’t have one but to maybe pin all your problems on b12 without even monitoring your levels might not be the safest way of doing things.

It could also mean you are ruling out other conditions that could be affecting it or other deficiencies.

Have you had your thyroid checked?

Often closely associated with deficiencies too- as well as crohns cholitis and the others you’ve mentioned.

As others have suggested- folate vit D magnesium and other levels may need to be tested during your bad phases to see if something else is going on and iron deficient anaemia may be causing part of the problem.

I’m relatively new to the b12 side of things but reading your post has made me nervous and wary of randomly self treating. Sorry if I’ve jumped to conclusions but I’m going by what you have written/conveyed in your post.

I hope whatever it is you get to the bottom of it regardless

Tc x

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Thanks for your reply. I have been tested for everything under the sun several times a year, they never found anything else wrong with me other than Vitamin D deficiency (which I now take tablets for) I was anaemic at one stage and obviously B12 deficiency several years ago....but because of the injections I won't come up as deficient in a blood test now, but that doesn't mean that I don't become unwell when my injections run down which is why treatment with B12 should be symptom lead, not blood test lead. I do plan to get my stomach issues looked into more thoroughly (I had blood tests for Coeliac, Chron's and Colitis) all negative, but have never had a camera down or anything like that....that may be the next step. However, even though I didn't test positive for intrinsic factor anti-body doesn't mean that I don't have pernicious anaemia, or that I can't absorb....hardly anyone with ongoing B12 deficiency does test positive for that. I just know that every time I come off B12 injections, my symptoms return after a few months, and B12 is the only thing that makes them better, so I have a pretty good idea that I can't absorb. I have tried B12 tablets, patches and a sublingual spray....they don't help much, the only thing that really does is the injections. It's just a question of how often do I need them, and how long should I inject for, as I now have these horrendous side effects every time I go back on them, but I obviously go back on them for a good reason. Hope this makes sense.

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Hi!

Could it be possible that you are low in potassium and/or magnesium? As these are used in greater amounts, to repair damage, when you inject, you may be experiencing hypo symptoms of these.

Try Googling them and their deficiency symptoms and see what you think. A lot of people who SI regularly need to take extra supplements of these.

I get as much as I can from my diet but also take potassium chloride and magnesium chloride, alongside a broad spectrum multivitamin and mineral supplement plus extra methylfolate and iron to counter my adverse symptoms. You do have to be careful with them but they can make all the difference.

Good luck!

Happy Christmas

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That makes sense, that it could be the pottasium drop when I first go back on B12. I do drink coconut water and eat bananas to counteract this, it helps, but it's the same reaction I get every time I go back to injecting. Does this get better the longer you stay on B12?

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I would think it may get worse as you use up more potassium (and folate and magnesium and everything else) as you have enough B12 to repair damage but it would eventually get better as you get to a point where you have repaired all the damage and then only need a maintenance level.

It seems to have been like that with me, anyway!! But I'm only guessing!

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