First loading injection done!

[Gecko22]

I had my first loading injection yesterday morning, done by a local pharmacist. Around 3 hours after, I was exhausted and wired and all of my symptoms ramped up until the evening. I gather that’s normal when you first start injections. My daughter also thinks I look a bit jaundiced. Maybe that’s just the colour returning to my cheeks as I’ve looked grey for months! I’ll be doing my first sub cut SI tomorrow and feel much more confident about doing it now, thanks to everyone’s posts on here. I really appreciate all the knowledge and advice you share on this group so a big thank you!

[Ghound]

Well done and all the best for your first subcut! 👏 Remember it can take quite a while for symptoms to resolve ( six months in my case !) so keep going and here's to the beginning of better health for you ! X

[Gecko22 in reply to Ghound]

Thank you! Feel happy that I've taken the first step and it's now in my hands.

[Cherylclaire Forum Support]

Let us know how it goes.

Not an easy step to take and never done lightly.

Some feel worse before better and "better" can be a long wait away as Ghound has already commented on.

I was restarted on two injections a week after functional B12 deficiency was diagnosed. It took three months of these injections (in the back of my arm from behind me) before I even felt that I was getting injected. No feeling at all until then and as the nurses were quite reluctant to go so far "off piste" with frequency, I was beginning to have my doubts....

There is often much more improvement to be had than professionals are aware of, if you can persist long enough to get there. More support would not go amiss. I was lucky enough to meet an ENT consultant who could easily recognise B12 deficiency without any testing, and whose advice was to keep going with my every other day injections, that I should not get disheartened and that persistance would pay off eventually.

Very difficult at times not to start wondering if something else has been missed, that surely a vitamin deficiency would not have such a devastating effect on your life. I have had six years of consultants trying to find out if that is the case. It isn't.

B12 deficiency can have affected you in many ways and repair can be slow. Worth continuing to aim for maximum return of self !

Very best of luck.

[Gecko22 in reply to Cherylclaire]

Thank you! I'm anticipating that it will take a while so I've bought a good supply of B12 and it has a decent expiry date. I feel like I'm on a mission to return of self! I've forgotten what 'normal' me feels like. I also have other stuff going on that's not being investigated either so I don't know what improvements to expect with the B12 as so many symptoms overlap. Any would be good at this point. I'm so glad your persistence has paid off and you've seen improvements.

Empathetic professionals who actually look at the symptoms instead of the numbers are like gold dust. My previous GP stonewalled me when I asked for further tests, referred me back to the LC service and said I should discuss tests with them! I had an appt with them last week, almost a year after I first saw them, and all they're offering is the same online 'recovery management programme' I turned down back then. They won't do tests for B12 or anything else or even offer symptomatic treatments. The level of knowledge and service is shocking.

[Cherylclaire Forum Support in reply to Gecko22]

Have lost the three best doctors in the practice since Covid - all working in hospitals now.

Two completely new receptionists at the practice.

Expect this is a familiar story nationally.

Doesn't inspire confidence - don't know how much any of the other doctors understand B12 deficiency. One of the remaining GPs had my NHS B12 injections stopped - and since we cannot choose who handles our cases now, I am not in any hurry to get in touch with them.

Can't do the last six years all over again. Way too tired !

So mainly carrying on with my injections, guessing when additional supplements are needed - hair falling out a clue for me to take folate or ferritin for a while. Some other recurring symptoms being investigated by Oral Medicine consultant.

Otherwise just my best guess.

[Gecko22]

Forgot to add that I did first subcut today🤩 I couldn't believe how easy it was in the end and I barely felt anything. I think the anticipation was the worst thing!

[Ghound]

Brilliant !! 👏 👍It's all about confidence - we'll done !!! Xx

[Gecko22]

Thank you!