Pernicious Anaemia and Shift Work

[Nade164]

Hi all,

I have recently been diagnosed with PA and am having three monthly injections, although my practice nurse will allow me to have them every ten weeks.

I am a shift worker and even though I am being treated I am really struggling with shifts. I work a set of nights, have three days off, then do a set of afternoon shifts which finish at midnight and then after just two days off I then do a set of day shifts which start at seven am.

I am really struggling adjusting e.g. from finishing at midnight Friday, then being due in work at seven am on a Monday. I'm Finding that I need to sleep for about ten hours, and struggle to switch from lates to day shifts with such a short break - I've been having problems with oversleeping and being late.

Is anyone else in a similar position or have any suggestions?

Thanks,

Nade

[deniseinmilden]

You have my sympathy - it's really hard, isn't it?

My only suggestion is if you are still struggling then you are probably still short of B12 and more - either sublinguals or more injections - might help, as may a good multivitamin and mineral supplement plus extra folate and potassium and anything else you may need.

I do know there are people with PA who work shifts with enough treatment so it is possible, it's "just" a case of getting everything balanced!

Good luck!

[freelancer]

I can't offer anything helpful, I'm afraid, but the shift thing is something I've noticed.

I do a job in which there's often a stressy deadline at 5 or 6pm, but a few years back when I first had PA I occasionally did one-off evening shifts at a place where the deadline was 1am. The next morning I was always depressed and tearful with no energy, whereas with the day shifts I was (relatively) fine. I wasn't doing any harder work, it was just that my body wasn't adjusting properly.

I think time, rest and more B12 is probably the cure, but that's always a lot easier said than done...

[Yalaha]

You are in still in the early days and it may take quite some time before everything normalizes. As deniseinmilden noted it's a very good idea to seek additional B12 sources as this will up the B12 levels and level out any ups and downs between injections. I've used sublingual lozenges, oral and nasal sprays at various times until I found what works best for me and self administer what I need when I need it.

It's so individualistic as to what each of us requires to feel well or "normal." Some of us have so much damage from delayed diagnosis that the tiredness and need for extra sleep doesn't always go away or still crops up rather often. For me I'm so worn out some days by 1 to 3 PM that I can't even imagine how you are able to carry on with such shifts. This is also a signal that I've overdone it and do need more B12 supplementation. Try additional B12 sources and don't be afraid to take as much as you like - you won't know until you try!

Chin up, it does get better but it will take time.

[Gambit62 Administrator]

The PAS have a raft of materials on the effects of B12 absorption problems on ability to work.

Possible with enough B12 and enough time then you should be able to cope.

If you are in the UK then B12 absorption problems would qualify as a disabilty under legislation, meaning that you have a protective characteristic and you may be able to get your employer to make some allowances for your condition. May be worth speaking to the citizen's advice bureau - definitely worth joining the PAS and seeing if they can support you in speaking to your GP and/or employer.

[Nade164]

Thanks all. Thankfully I was diagnosed fairly quickly - I had only had symptoms for around 4 months before I got diagnosed and it's been six months since then so it is all early days.

Would I need tests to see if I have absorption problems? I was reading through some stuff yesterday but it's all new to me and there was so much to read it just got confusing. I have signed up to the PAS last night but need some time to go through it all.

Where do you get sublingual Lozenges from? Prescription or Internet?

[Gambit62 Administrator in reply to Nade164]

You can get sublinguals - also nasal sprays and skin patches on the internet. The only format of B12 that is controlled by prescription is the injectable form as all injectable substances are prescription only.

PA in the strict sense is an autoimmune response that destroys the main mechanism by which the body absorbs B12 - it is often used as a confusing short hand way of referring to other absorption problems. As you are on injections the assumption is that the deficiency isn't dietary but the result of an absorption problem.

Normally the body is very efficient at recycling B12 so most people need very little - however the recycling mechanism depends on the same mechanism as absorption which is why you will be on injections for life.

The symptoms of Pernicious Anaemia are those of the B12 deficiency that causes it and the treatment for a non-dietary B12 deficiency is the same whatever the cause so not sure that it makes much sense trying to find out exactly what the cause is unless you suspect that it is a family thing - PA is inherited - as are some other causes. The tests for PA are at best 50% accurate so it can be a bit of challenge trying to get to the bottom of things.

It can be very difficult to get information on what B12 deficiency is as a lot of medics aren't very well aware of it, have various misconceptions (eg anaemia has to be present). There are some good books that you can get from the PAS website and there are others out there - eg Could it Be B12? by Sally Pachalok et al. However, they can be very scary as getting diagnosis and treatment can be really difficult. I would take a proper look at the list of symptoms on the PAS website before drawing the conclusion that your deficiency was picked up early. My GP told me that my deficiency was caught early because I didn't have signs of anaemia in my blood but I can actually trace my symptoms back over several decades with hind-sight.

[Nade164 in reply to Gambit62]

Thanks, I tested positive for the intrinsic factor antibodies and that was how they came to the diagnosis.

I have been focussing mainly on the tiredness and sleep troubles aspect, but when I think back now there's other little things that start to add up - premature greying being one I've had for a good four years now, and a recent prescription I was given for reading glasses due to blurred vision that seems to have corrected itself. The Internet has lots of conflicting information so it's loads to get my head round, my GP kind of treated it as 'oh you've got this and you need injections' and that was it.

[Gambit62 Administrator in reply to Nade164]

premature greying is more of a correlation - underlying genetics of PA proper - than a symptom. Good that you don't seem to have any tingling and numbness - I developed 'carpel tunnel' in my late 20s and had depression and anxiety from my teens but nobody thought to look at B12 until I had fall and broke my leg so badly I ended up in hospital in my early 50s.

Wishing you a swift recovery

[Mander17]

I had similar problems when I was first diagnosed! I don't work shifts as such but do work some 12 hr days and oncall over night!

I have my injections every 8 weeks and also carry a B12 spray with me at work, so I can double up on that too if need be! It took me over a year to start "feeling better" still tired but able to do more than work and sleep now!

Advise going back to your doctor and renegotiating time between injections and see what works for you!

[Blueby]

Hi, i work irregular hours as well. One day I work from 9am to 8pm and I find it too much. particularly when I have to work the day before and the day after. I asked if my hours could be more regular and the occupational therapist advised this as well. But my manager has just ignored my request. So I have just been going home early and saying I am working from home. They have to make reasonable adjustments for you and why should you not be able to have your job because of your disability.

I know it is hard because many employers don't care but the law is on your side. If they force you into having to leave because they won't make adjustments you should take them to a tribunal. Again I know it all sounds so easy but you could burn yourself out like I have - I used to do two days that were that long for about 30 years and it has done me no good at all. I have hardly any quality of life anymore.

But whatever you do it pays to be covered and if you don't already have legal insurance on your home insurance get it because it only cost about £30 per year. I did this thank god, 8 years ago and the insurance has covered a legal battle I have been in for 6 years.

There are probably agencies that offer free advice and so on but for £30 I got strong legal people on my side.

Good luck sorry if this message is rambling I haven't been able to sleep for three nights now....