Symptoms

[Char19931]

Hi all, I’m new to this page as I wanted to know if anyone has any ways of dealing with symptoms. My injection always seems to wear off 3-4 weeks before it is next due and I get horrible headaches, dizziness, cravings for sugary foods and all sorts of horrible symptoms. Does anyone else get this and how do you manage?

[fbirder]

By injecting more often.

If you're on the standard UK regimen of injections every three months then ask your doctor to check out the latest version of the BNF online. The recommendations changed in January so that it's now every two to three months.

[Char19931 in reply to fbirder]

When I last asked they said it can only be done every 12 weeks but I see a lot of posts saying that if you keep asking they can sometimes change it! Maybe I’ll try that again.

[Gambit62 Administrator in reply to Char19931]

point out that there has been a recent change to the BNF that means that B12 injections should be given every 2-3 months in the absence of neurological symptoms (previously it was 3 months). It is more than likely that any local guidelines won't have been updated for this so ask your GP to refer back to the BNF for the updated guidelines.

[Lorna12345]

In my country at the beginning of treatment you get 1mg every day/7days. Than every 2 weeks 1mg/2 months. And than once a month for life.

I had headaches and I was very sleepy aand tired. But that was only at the beginnig. I just endured it.

[Alfabeta]

Hi

I am on 12 weekly injections and my symptoms return between week 6 to 8 on a regular basis and have done so for over three years since I was first diagnosed as B12d deficient. I’ve only just got my doctor to agree to 8 weekly injections.

[LWhelan]

I had very similar symptoms to you plus more. I tried & tried to get my GP to increase my injection frequency to no avail. When I told him I had started taking sublingual b12s he threatened to stop my injections so I simply told him I would stop taking them. Then I started SI and ‘just forgot’ to mention it to him😀. When you feel so rubbish it’s just not worth the effort arguing with your GP especially given SI is so cheap👍

[Prettyjoey in reply to LWhelan]

Please tell me what is SI?

[RoMello in reply to Prettyjoey]

SI is self injection. Lots of us have had to resort to it. Search the site for many many posts regarding this. I've been doing it for about a year now and couldn't function at all without it. I struggled for nearly 20 years on 8_weekly injections. I felt increasingly bad about a week after my injection until the next one was due. I resorted to SI after I realised I had so many neurological symptoms that were getting worse and my GP was unable to help.

It has helped with those gradually, but I'm still prone to exhaustion, but more functional more of the time. I SI as soon as symptoms reappear, currently about every 5 days. People seem to vary considerably in what works for them. I've found this site invaluable for sourcing SI supplies from reputable online companies and encouragement from others. Some manage fine with undertongue sprays and lozenges btw to supplement their b12 injections through the GP. And eat your greens 2 or 3 times a week for folate.

Good luck.

[LWhelan]

Self injecting

[alamagpa]

I am a fellow PA sufferer, not a doctor, so I cannot offer medical advice. However, I feel for you. My doctor started me on monthly injections. I found a new doctor, and I now inject twice per week. In one of his books, Martyn wrote about a doctor-PA sufferer who injects herself three times per day. If the injections are not working, you may need, as fbirder suggests, to inject at a higher frequency. I hope you find a doctor willing to provide you an accelerated injection schedule, or an alternative (e.g., infusion via IV). If/when your request meets with resistance, feel free to remind him/her that it is for all intents and purposes impossible to overdose with B-12.