First time triumphant injector. Now I... - Pernicious Anaemi...

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First time triumphant injector. Now I wait.....

Pingo profile image
13 Replies

Self injected for the first time using needles and syringes I bought at a chemist in Germany (was there on business last week) and it was amazingly easy and painless. Needles are a bit small (30 gauge) so have ordered 23 gauge for next time. This forum has been so helpful, and I felt really optimistic taking matters into my own hands after nearly a year of being too ill to get out of bed -- except for 2 months after my loading dose, during which I felt fine. But Dr didn't tell me that I had a chronic condition, and so I went back to square one within 2 months.

Only thing I find is that any "recovery" reaction I have is neither linear nor immediate. Do most people find this? I kind of expected to feel better the next day. But I do notice with lots of lozenges, sprays (and now injections) the blinding headaches I wake up with every morning start to recede. So something's definitely happening.

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Pingo profile image
Pingo
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13 Replies
clivealive profile image
clivealiveForum Support

Congratulations and well done Pingo

As to "recovery" reaction I guess that as we are all different there is no one stock answer.

Are you able to check your Folate level?

Pingo profile image
Pingo in reply toclivealive

Doctor said it was normal. Didn't see what it was. My B12 level was 180, which wasn't extreme, but I've been incapacitated for nearly a year.

clivealive profile image
clivealiveForum Support in reply toPingo

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body

Pingo profile image
Pingo in reply toclivealive

I've been told to take folic acid along with injections and lozenges....is that wrong?

clivealive profile image
clivealiveForum Support in reply toPingo

It depends who told you.

If you are deficient or low in folate then yes - supplement - but I originally asked whether you could check your level.

Being told it is "Normal" could mean it's OK or just bumping along at the bottom of the range and it appears that your doctor is not very communicative about your test results.

Is your B12 deficiency a dietary or an absorption problem? Do you know the cause?

Pingo profile image
Pingo in reply toclivealive

I've been vegetarian for a couple of years, had chemo for cancer....that's the only cause I know. My doctor hasn't seemed interested in finding out anything more.

I'll definitely call my surgery and check the folate level.

clivealive profile image
clivealiveForum Support in reply toPingo

Ah sorry! I didn't know you were vegetarian in which case you "probably" get enough Folate from your diet but check just in case.

You will need to supplement with B12 one way or another for the rest of your life unless you change your diet.

I am not a medically trained person but have had Pernicious Anaemia (a form of B12 deficiency) for more than 45 years

I wish you well and bid you goodnight.

Pingo profile image
Pingo in reply toclivealive

Thank you so much, Clivealive.

margareta12321 profile image
margareta12321

well done.I started self injecting last week and although painless I find. It hard to make the push into my muscle.Like you I have been let down by my doctor but after a week of alternative day injection I feel a difference.Hold on in there and hopefully you will too start to improve.

allsortsofbags profile image
allsortsofbags

Well Done on the SI, feeling better can take time. I started SI about a month ago and the difference is amazing. Keep going and good luck.

ACritical profile image
ACritical

Yes, improvements after injection can take up to 2 days, by my experience

Pingo profile image
Pingo

Wow. I'm sure not getting a 2-day improvement.....

clivealive profile image
clivealiveForum Support in reply toPingo

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

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