So, after doing a self injection on Sat I am not really feeling any better. How long does it normally take to work? Should I do another as when I have 1 at the doctors I normally feel better.....
Also my leg is quite painful where I injected. Is this also normal?
Hi alison687. Reading your previous posts it looks like you may not have had a B12 injection for some time prior to self-injecting (at least three months, perhaps six, as far as I can tell).
And also that you purchased cyanocobalamin (by mistake)?
So, there could be a number of things going on.
1) you may need loading doses again to re-establish B12 levels (though B12 levels are no indication of how effective treatment is - more on that below)
2) you may simply need more frequent injections to gain optimal benefit (everybody is different and a frequency that suits one may not suit another)
3) different cobalamins suit different people - it's an individual 'thing' - so it may be that Hydroxocobalamin is a better for you (though there's nothing 'wrong' with cyanocobalamin)
4) there could be something else going on that's causing your symptoms (low ferritin and hence iron deficiency anaemia, folate or vitamin D, for example). Absorption issues are common to those with B12 deficiency and low or deficiency levels in any of these can make you feel quite ill.
Suggestions:
1) Repeat loading doses - 6 x 1mg injections every other day, then re-assess and see how you feel. If symptoms get better when you inject and then return before the next injection, that's a sure indicator that you need more frequent injections.
2) monitor symptoms (grade 1-10 on a daily basis and keep a record) so that you can assess what's the right frequency of injections, for you - sometimes it takes a while to work out a regular regime so knowing how your body respond is crucial in that process
3) Continue with the cyanocobalamin injections but if there's no apparent improvement after loading doses (and you're sure that you have no other deficiencies that might be causing problems), consider changing back to hydroxocobalamin (because you already know that works for you). Note: the regime for cyanocobalamin is monthly injections - because it's thought not to be retained by the body for as long a Hydroxocobalamin (though rigid treatment regimens are a bit of a nonsense, So again, judge what you need according to symptoms.
4) if you remain unwell, see you GP and ask to have ferritin, folate, and vitamin D tested.
5) if none of the above work, ask your GP to,investigate to see if there are other underlying causes for your symptoms (hypothyroiditis and diabetes and two,common culprits).
How long does it take to work? That's not an easy question to answer because we're all different and have different symptoms. And some symptoms get better before others (for instance neurolgical symptoms usually take longer to resolve). So it's a case of trying the above and trying to find a B12 injection regime that suits you.
About the issue of your GP stopping your injections because your serum B12 levels are within 'normal' limits (as per one of your previous posts)...
We hear this so often that I could sometimes scream...On a daily basis. It's wrong.
I recently wrote a reply about this and there’s lots of information about serum B12 levels and testing following treatment, which isn't either necessary or in accordance with guidelines. The information will help you to understand why your GP's approach is wrong. Suggest you print and take to your GP (highlight the 'bits' relevant to you) and ask to have you injections reinstated - as per the BSCH and BNF guidelines.
Here's a link to the post that contains that reply (think it's about the fifth one down):
healthunlocked.com/pasoc/po...
Hope you find something that works for you and begin to feel better soon. Post again if you need more help.
Good luck 👍
Thank you so much for your reply. This is the 2nd time that this doctor has stopped them. A nurse put me back on them the first time round. I did think then that I should really have the every other day injections tbh but I didn't. I do need to fight this with the doctor as from the way my levels have dropped in 3 mths then I'm still not retaining/absorbing b12. I haven't had an injection from the doctor since October. So yeah over 6 mths. Is it safe to use cyanocobalamin every other day for the 2 weeks?
Also all other things were fine in my blood. Even the doctor said nothing else is showing up in bloods to make you tired(this was only 1 of the many symptoms I told them about) she then asked me how work was..... I am not stressed just my levels of b12 have dropped over 200 xx
Hi alsion687. Sorry about your noodle doctors!
Yes, it's safe to inject cyanocobalamin every other day for two weeks...or every other day until no further improvement (the intensive neurolgical regime), if required.
The only provision is that cyanocobalamin should not be used by anyone who suffers from Leber's Optic Neuritis - and don't think,you do because I know this was mentioned in a reply to one of your previous posts.
Certainly worth reading the guidelines in the link to one of my previous replies (as above) and taking those along to discuss with your GP to see if you can get a more appropriate treatment regime prescribed.
Or if discussions, don't work write to your GP and formally request B12 treatment (as per the guidelines) and include the documents as evidence. These, and your concerns, go,on your medical records so your GP has to read them and would be very unwise to ignore the contents- and your request.
Good luck. Be better soon 👍
I just don't understand why it has to be so difficult. Must say I'm a bit put off self injecting because my leg is quite sore, I'm scared that I'll do myself damage. Which I know you probably can't but I am a worrier. Feel at present it's my only option though... ☹
It's actually very difficult to do yourself any damage injecting in the thigh (outer upper third).
Some tips:
If you're not very confident, try filling a syringe with water and practice injecting an orange. Remarkably like injecting a human - unless you hit a pip 😉. Good for gaining confidence in handling a syringe.
Use alternate legs and try not to inject in exactly the same spot every time (there's actually quite a wide area that you can inject in - just imagine how big that thigh muscle is).
Warm the B12 in your hands first - more comfortable if it goes in a body temperature.
Don't worry about hitting a vein - there are no very large veins in the area you're injecting in. If you do hit one, when you inject the vein will,collapse rather than open up for the B12 (and super huge doses - 10,000mg are given IV for carbon monoxide poisoning - so even if a some did leak,into the vein - no harm.
Sometimes it's possible bleed from the injection site if a vein is nicked on the way in. Not s problem - simply apply pressure for a few minutes once the needle has been withdrawn.
Occasionally B12 may 'track-back' and leak out of the injection site. Again, not a problem. Just apply pressure. The amount that leaks out is minute compared to goes in, so it won't reduce the dosage injected or have a detrimental effect.
And what deniseinmilden says 😉😀.
Best of luck. Sure that once you've done it a few times...and begin to feel better...you won't think twice about it...just be a routine thing you have to do to keep well.
👍
I think I've done about a thousand jabs now and sometimes my leg complains but usually it doesn't. If it looks a healthy colour (some bruising is normal though) and isn't hot or very red or swollen it should be OK.
The more you do the more confident you get and if you start to feel better you then don't really care - anything is worth it!!
Good luck!
It does feel a little hot but maybe it's just psychological.... because I'm thinking about it....
Hi, was the injection into muscle or subcutaneous tissue?
I use a short 30 gauge needle into the tummy and cant even feel it.
Into muscle
Maybe consider subcutaneous instead next time you buy. I find it so much easier, just pink up tummy, pop the needle in, let go and inject
Where do you buy from?
I'm actually feeling a bit better today.... I bought from the German pharmacist that was suggested on this forum
Hi allison68
I have never self injected. But I have a question, which cobalamin are you using?
Hi. I am using cyanocobalamin, just purely because I mistakenly ordered that instead of hydroxocobalamin.
Did you actually have a specific B12 test for pernicious anemia? if not then B12 may not be your problem. Doctors have been giving B12 to patients for years as a placebo. One shot will not do anyone any good. If you have symptoms of nerve damage you will need loading doses (many doses or shots) to get your levels back up to normal, once you get leveled out, once a month is fine. Nerve damage is slow to heal. Even after you are leveled out, if your symptoms are severe, it can take a year or more to completely heal depending on what kind of damage and for how long. your doctor should have told you these things.
I did have a test for PA but it came back negative. However after speaking to people on this forum I know that this particular test can give false negatives. I am in the process of writing a letter to my GP to ask for b12 shots to be reinstated and also for me to have another PA test. Nothing else was present in my blood tests that would indicate something else.
Hi SusanLMckinney.
I concur on all you’ve said. It’s taken me a year to heal from my nerve damage.
Hi terrybraden what sort of nerve issues were you having?
Hi elvistoronto1
I had oral numbness. That's the first I noticed. I couldn't feel when I cut myself, or when I burned myself with my curling iron, or a blister on my foot. In fact, I was interested in this forum when someone posted about what was called, "bodily neuropathy". That was over a year ago. (18 months) With high doses of sublingual and transdermal patches (methyl), my B12 level is quite high and the feeling has come back all over. I don't know about my folate level but I must be ok, I don't notice any issues there. I was checked for diabetes, which can cause peripheral neuropathy, but I don't have that. I have also had an MRI and that showed nothing, plus chiropractic to make sure I wasn't out of alignment, and am fine there too. So my nerve damage has to have come from a B12 deficiency.
Hope I have answered your question. Good health too you.
That's great to hear Terry. Most of the tales on here don't seem to have much good news in them. It's great to hear an actual recovery story for a change.
Thanks elvistoronto1. Sorry I didn’t reply sooner. We went out of town and I didn’t have access to the net. I feel a lot better in mood and outlook. I gather you live in Canada by your name. I do too.
Yes Terry. In am in Toronto in fact.
I live in the Vancouver area. Canada is a big Country. How did you find this site?
When do you feel better?
a question about symptoms being really bad then better day to day
Feeling MUCH better after 7 loading doses!!!
