2 injections a week for 11 weeks and still symptomatic

[Cherylclaire]

Now I feel like I'm just waiting.....

Booked up injections with the nurse until New Year, improved- not quite so mercurial although still peaking and troughing physically and mentally. Need another certificate on 2nd Jan, as am waiting to be seen by someone at either Guys/ St Thomas' (or both) but no letter yet, so not sure who/ what department. No longer know what to ask for as have been told I have 'functional B12 deficiency', hence frequency of injections. There is little info. on treating this and certainly my Dr has had to feel her way through, despite reluctance of some of the nurses to inject this frequently...... Feeling a bit lost, and likely to lose job- currently on 1/2 pay, and feel that time is running away from me without significant improvements, despite best efforts: mine and Dr's. What to do next?

Operation on shoulder (rotator cuff injury and fracture) agreed by consultant, which is a good thing, so now waiting on a date. Told him I would take ANY cancellations, Christmas, New Year, not bothered. Bit desperate here too, as need significant strength in BOTH arms for my work (teaching woodwork to potential designer/makers) - need it to be soon as I can't go back and then go off sick again for op. and recovery!

Feel like I'm heading into 'Daniel Blake' situation here...

[jade_s]

I can't tell you what to do but when I became desperate and GP wouldn't listen, I took matters into my own hands and started self injecting. Daily. I don't regret it for a second. When I (try to) skip a day, my balance and weakness issues come back immediately. Still, even after 2 montjs, some of the healing has been very slow going.

On the other hand some of the issues you describe in other posts can also be caused by other things. Have they done testing for thyroid, cortisol, and gut problems? How are potassium and iron levels?

[jade_s in reply to jade_s]

Oh and folate! Are you taking folic acid regularly?

[Cherylclaire Forum Support in reply to jade_s]

Lucky me- I've got a Dr that does listen, is learning, is currently seeking expert advice because she knows she is out of her depth- so you can see that a stubborn person like me would be encouraged to think that I could persuade her to continue with twice-weekly injections indefinitely, no?

NO; today she told me that I really should be on one a month by now (?) - I told her that I can finally feel the injections now (they don't hurt at all, I just know I'm being injected) and that I am unwilling to stop just when I'm starting to improve, at least without an expert's advice... so she is sending me to a neurologist at St Thomas' and in the meantime, continuing to try to contact an expert in B12 at the same hospital. That bit sounded fine, wasn't so keen on her trying to pass off numb arms as something connected with top of my spine (?) -although she's not so sure that she is willing to send me for an x-ray! Have been tested for thyroid and gut problems: nothing. Cortisol? Not sure what that is, but I've had 4 full blood tests and about to have a 5th as just completed 3 month ferritin and folate course. She did say she wasn't going to test me for B12 any more so she's certainly learning something. I told her it will be above 2000 as usual, but at least she understands why now. I did bring up about self-injecting, but only because some of the nurses seem very anxious about continuation of injecting at this level- worried they will influence her. I'd rather work WITH her if poss.

[deniseinmilden]

My real improvement only came when I started self injecting every day and I need 1.5 mg in 1 ml hydroxocobalamin daily plus lots of extra "cofactors".

For more information you could look up my profile by double clicking on my name and see my post "My Experiences".

[Cherylclaire Forum Support in reply to deniseinmilden]

I will do Denise, I'm doing this in the library, and not allocated much time, library closed a lot over Christmas and lots of computer malfunctions too. Time to go shopping for a laptop in the sales maybe? Wouldn't have a clue what to get though.

[Gambit62 Administrator]

Yes, I haven't been able to find out much about treating functional B12 so your GP is doing very well. Personally I seem to run out before 24 hours is up but seem to manage with nasal sprays and some sublinguals and possible that these might work better in terms of keeping levels just about where they are needed as the rate at which you lose B12 is higher the more you have in your blood so the fact that the amounts being absorbed by these two methods are smaller may actually make it more efficient as a means of keeping the levels high in my case.

Have you talked to occupational health at your employer or asked for a referral to occupational health to see if there are any adaptations that can be made to enable you to carry on teaching despite the problems you are having.

My experiences with going on to half pay was through stress and depression quite a few years before the B12 deficiency was identified. It was quite stressful in itself but for me was a job that I really didn't want to go back to.

Hope you manage to get a cancellation soon.

[Cherylclaire Forum Support in reply to Gambit62]

Gambit, do you think sometimes your body tries to talk to you but you're just too busy to listen?

Well now I'm not busy, and trying to listen to what's being said. Mostly seems to be "help" ! Sometimes it says "No, NOT that" or simply "goodnight" ....zzzzzz

As far as work goes, there is no occupational health: it is a small independent college where covering my student group is difficult and adaptations also a problem as learning to be a designer/maker in woodwork from scratch involves a lot of hands-on practical learning on machinery and with power tools: many H&S issues there. Still aiming for a return, once this is sorted and rotator cuff op done. Am I kidding myself? Maybe still not listening to my body or don't want to hear it yet. Got a pre-op date: Feb 3rd. Still hoping for a cancellation before that.

When you first read the list of symptoms, did you realise that it all went back for years? Thinking of the stress and depression.

One of the funny things was that when I told one of the managers about symptoms, and said that even the sore skin, cracks and bleeding at the corners of my mouth were symptoms, he said "But you've ALWAYS had that!": I've been there 12 years! These particular symptoms were the first to disappear, and remain a very good warning sign for me.

[Gambit62 Administrator in reply to Cherylclaire]

I don't think I really accepted that the depression and anxiety were really symptoms of B12 problems until I started treating myself with the levels of B12 I needed and after a few months I realised that they had just gone.

One thing I do remember was the tiredness taking away from my ability to recognise the mood disorder - do a lot of jogging and after one B12 shot I went from struggling to move to struggling not to curl up in a little ball and cry - so at that point I didn't think that the anxiety and depression could be related to the B12 and I was actually quite rude to someone who suggested that they might be ... and I've felt quite guilty about that ever since.

It may still be worth talking to your employer about adjustments and referals - even if there isn't an in-house OT there are people out there that will provide it as an out-source option - or on a referrals basis ... and they may have some ideas you haven't thought about

[Cherylclaire Forum Support]

Gambit, will go in to work as soon as I get a good day on me, and will let you know how my employers are thinking currently about my situation. I have kept them up to date and been very honest about it all, given them copies of everything that I have received: hospitals, MRI results etc. Also until now have taken in my Dr certificates personally and discussed progress.. but not been great last couple of days and had trouble getting round a supermarket yesterday! As open as I want to be with management, I don't particularly want to give a demonstration of me wearing myself to exhaustion while performing trivial tasks rather badly!

It also strikes me how difficult it is to get GPs to see depression as a mere symptom of a vitamin deficiency, and not a much larger and separate problem- particularly difficult for post-menopausal women. I have been offered Amytriptyline (?) three times now.

As for being rude, perhaps this also is partly a B12 thing- my behaviour at times has been very out of character. The feeling guilty later thing? I think that's you. I'm just glad that I haven't been kicked out of the library, since this forum has been a lifeline to me. I never felt like curling up in a ball, but often felt that it would be a relief to be far away and alone among strangers. Where no-one knows who you were and no-one cares who you are.

Had a good talk with the nurse today about why the nurses are so anxious about injecting me twice a week- she said they had never done anything except 13-week gaps before, and that she'd looked up 'toxicity' because she was worried she was going to kill me: I told her the only time I thought I was dying was when I had to wait 13 weeks! So she booked up next week's injections and said that she would have booked up more but I had forgotten my new diary (AGAIN!) - so I'm still trying not to have to self-inject, mainly because I'm stubborn I suspect.