Feeling rubbish

[Dianebee]

Morning. So I had my last loading jab on Friday. Saturday I felt fantastic!! But yesterday back to square one, spent all day in bed today I'm dragging myself up for work with no energy. I didn't expect miracles but thought I'd feel a bit better. Someone reassure me it's just a blip

[Lisahelen]

Morning, a lot of it, i think, depends on how bad you were in the first place. Bearing in mind it can and has taken some people sometimes years to get back to how they were before any of their associated problems. You are at the beginning of the road to what hopefully will be a full recovery.

I myself actually felt worse after my loading with symptoms i didnt even have beforehand. It can affect us all differently. my friend was b12 d worse than me. he was given loading but he seemed to be ok with just that and because he has had the problems for so many years just puts up with them! I couldnt nor wouldnt do that. I want to be fit and well not living some half life. Because i was feeling worse after loading and my gp refused to treat as per guidelines re. Neuro, i got myself some patches and drops, and then progressed to injections.

Tomorrow is another day and you never know you might just feel so much better. It is a very strange condition it has to be said.

[LadyNZ]

Are you also taking folic acid? I thought I didn't need it as my FA levels were high, but I've been back to Square One again this past week. Somebody told me I should be taking folic acid as well so I started 3 days ago and feel so much better now, it's almost unbelievable.

[pvanderaa]

Are you supplementing with folic acid and a daily multivitamin?

[Dianebee in reply to pvanderaa]

Yes I'm on 5mg folic acid plus a centrum vitamin

[Hels13]

Hi, I understand how you are feeling. At the end of my loading injections I felt horrendous for over a month and couldn't even work so you've done really well. Does your GP know the cause of your B12 def yet? At 113 it's very low.

Please note that I am not qualified to give advice this is purely from extensive reading and the assumptions I have made. I believe feeling worse is down to one of two most likely problems after initial injections (although there several potential other causes).

1. Part of the methylation cycle is related to detoxing the body of homocysteine and Methylmalonic acid from harmful substances into non-harmful. Therefore if the process is now correctly working your body has had the flood gates opened so you're acutely detoxing making you feel worse. Niacin can apparently help slow the process down.

Or

2. Another part of the methylation process is not working correctly so now your body is flooded with B12 it is not able to effectively process which may then cause a rise in Methylmalonic acid, and maybe homocysteine if you're taking folic acid that your body can't convert into methylfolate.

If these assumptions are incorrect someone please correct me!!

When I told my GP I felt worse after my loading doses I was informed I could not possibly be B12 def then as he thought I should have felt instantly better even though I had low B12 with high homocysteine and Methylmalonic acid test results. If you have no improvement by your next GP appt ask what they know about the methylation cycle. I know you've said previously they aren't well informed so maybe it might prompt them to get informed.

After little useful input from my GP I have started using methylfolate sublingual drops and self-injecting for the past week and have already seen dramatic improvements. Although I still have a very long way to go this has given me hope. I am trained in giving depots so was OK self-injecting even though this was early to take into my own hands. This seems to be working for me but this is just my experience and very early on, remember we are all very different. Hopefully your GP will be open to gaining a better understanding of treatment and individual needs, let us know how you progress and I hope you start feeling some improvements soon x

[Dianebee in reply to Hels13]

Thank you! The actual cause isn't certain yet I'm back at gp next week so I shall be discussing. Thank you for your reply it's a big help