Feeling worse again...

[KCxo]

On Friday, I finished my second loading dose of B12 injections after finding out that my levels had dropped to 93 only 2/3 weeks after my first initial loading dose. I felt better while getting 3 injections a week, even having enough energy to walk to my appointments, but now I'm down to 1 injection a week for the next 4 weeks and all my symptoms are worsening.

The exhaustion is the worst. Yesterday I slept for 13 hours and was tired again 6 hours after waking up. Brain fog is back in full swing, too. Tingling in feet, back and scalp. Dizziness has yet to make a reappearance.

I've been trying to make an appointment with my GP to discuss this and see if there's anything more they can do for me, but every time I phone, the receptionist says they're fully booked and that I have to phone back in the morning to see if there's any cancellations, but, when I do, there never is.

[Lisahelen]

How easy is it for you to be waiting for the surgery to open in the morning?

Like you i had difficulty getting an appt if i phoned.

Now i go to surgery and wait for them to open in the morning and get a same day appt.

[BethattheBeach]

Can I suggest you keep a detailed journal so you can present this to your Dr when you eventually get your appointment?

If possible have someone with you as an advocate...it is harder to ignore two of you - especially if one is thinking more clearly than the patient.

Also, check on here for supplements and diet advice. It all helps.

Good luck.

[KCxo in reply to BethattheBeach]

Funnily enough, I did start writing it all down last night; dating back to February 4th. I'll keep writing and hopefully it'll help my GP help me. Thanks for your help.

[Sleepybunny]

I think that brainfog, tingling and dizziness are usually considered neurological symptoms.

pernicious-anaemia-society....

See Symptoms Checklist in link above.

b12deficiency.info/signs-an...

In the UK , the recommended treatment for those with B12 deficiency and neurological symptoms is a loading injection every two days until symptoms have stopped getting better. In effect this could mean loading injections for a period of weeks or even months if a patient continues to improve.

Your GP can find the info in the BNF (British national formulary) Chapter 9 section 1.2 It's likely that your GP has a copy of the BNF on their bookshelf. this link has similar info to BNF

patient.info/doctor/pernici...

I'm thinking of getting my own copy of the BNF to show to my GPs when necessary. Info on treatment is also in the "BCSH cobalamin and folate guidelines" Has your GP got a copy of teh BCSH Cobalamin and Folate guidelines? I gave a copy of it to my GPs.

The PAS might be helpful to talk to before your next appt. They should be able to point you to useful information.

pernicious-anaemia-society....

01656 769 717

b12deficiency.info/what-to-...

[_tracy_]

Some have resorted to self injection because the time between shots was too long. There is a PA Facebook group you can join that can provide information and support for doing this.