How does this read? It's about B12 deficiency

[Katymac]

I've basically written it because today I can - goodness knows what I should do with it; but I have a bit of insomnia (which as far as I can tell is the only down side of the B12 injection so far - & tbh I'll live with it!)



Today I cut my toe nails some were a bit ragged and some were very long- probably because I haven’t been able to reach easily for about 10 weeks. Hopefully I’ll get time to paint them in my “wonderful window”.

What’s a “wonderful window” I hear you ask (or at least I hope you do) – well it’s the time after I’ve had my B12 injection when I have a life; that would be the life the nurse giving me the injection one time told me I should be grateful for. At the time I told he it just made me resent the rest of my life.

I get nearly 2 weeks now after about 5 B12 injections – they happen every 12 weeks, so I have a 2 week “wonderful window” followed by 10 weeks of ‘poorliness’

So I can reach my toes, big deal – well it is when you can’t without a lot of pain, my husband shaved my legs last week as I couldn’t reach and I’d taken enough painkillers that day. What else can I do in my “WW”?

Well I can get dressed without pain and I have a greater choice of clothes because the seams and fabric don’t irritate the nerves in my skin, oh, & I can put on jumpers and things more easily as my shoulder can move more freely. I can wear shoes that fasten rather than slip-ons and tights are possible too.

I can walk up and down stairs without placing each foot on each stair so I don’t stand on one leg too long and when I get up in the morning I can walk without pain in my feet. I can carry things up and down stairs as my balance is better (I don’t trip over my own feet as much) and the pains in my hands have reduced so I can move them better and use scissors and can openers.

My joints hurt less (I still have pain) but my knees, ankles, elbows, shoulders all seem easier and in addition my long bones hurt less too; plus pressing on my joints & pressure points cause less pain-I love these 2 weeks. I take far less pain killers during this period than I do the rest of the time.

I don’t get pins & needles during my “WW”, I don’t get neuralgia, or those odd shooting pains that are random or that nerve pain that is so sharp I have to stop what I am doing just to hold that bit of me.

I can think (& type) much better and compose sentences without getting my colleagues to read them to ensure they make reasonable sense - during my “WW” I spell better too. Using systems diagrams is very hard when my brain takes so long to process stuff and feels all woolly and foggy but now I can plan and formulate an essay to explain how I feel.

I have no mouth ulcers - I can’t tell you how much pain mouth ulcers cause, last week my gums and tongue were sore too but this week they are fine….bleeding a bit but not sore – they bleed because when they are sore I can’t clean them very well…..so when they aren’t I scrub a bit harder.

I can eat! Really eat, food different types, milk, fruit even the odd egg (almond & coconut are still off limits but I can cope with that) – I’ve been FODMAPping (it’s an exclusion diet you know) for so long I hardly remember what a balanced diet is! I have less diarrhoea, less muscus, less pain, less blood in my stools it’s all good!!

Trying to fit my life into those 2 weeks is very hard, when I’m a bit poorly I can’t hold an intense or complicated conversation but as my GP surgery takes over 3 weeks to make an appointment by the time it comes around I’m too emotion and unstable to make sense…..and as for making an appointment while I’m poorly for when I’m well- sadly it’s beyond my comprehension. So I do all the business-y stuff I have to do & I try to have a bit of fun with my daughter & husband and I clear all my filing every 3 months or so (not sure why).

Basically I try to fit 3 months’ worth of life into those 2 weeks, my “Wonderful Window” you know the one that nurse said I should be grateful for. I love those two weeks, but then they start slipping away & all of a sudden it’s ages until my next injection.

[Only1scoop]

Hi Katy

I found your post really interesting.

I also have b12 deficiency although loading injections have stopped as I'm borderline at moment.

I don't have pernicious anaemia and am quite worried as to if an underlying condition causes it or if it's just on the low side.

I'm totally wiped out at the moment and experiencing morning nausea which I remember I had when it reached its all time low.

Glad to hear you are feeling good following your 'fix' it's such a shame it's short lived.

[Katymac]

Thanks - I guess it is like an addiction and a 'high' almost - it changes my life....for a very short time

Hope you feel better soon - have you tried the spray? It helps I think

[FeedMyFaceWithJaffaCakes]

You can have B12 more often than 12 weekly if you require it. Ask your GP to run your bloods to check your levels. (I'm a nurse and have several Pts who we give it to 4 weekly!) or else you can get it in oral form, needs to be taken with vitamin C to help absorption though!

[Katymac]

My blood level is 1808 (last week 4 days before my injection) so I can't see them changing their mind

I just don't think they believe it makes that much difference to me/my life - I've taken in links to the NICE guidance, I've asked for help but apparently too much is dangerous

I wonder if I'm not processing it properly or if I need something else with it (possibly Vit C)

[Katymac]

TBH I'm starting to wonder if it's all in my mind....but each 12 weeks it lasts just a little bit longer & I hope so hard

[Katymac]

Is this a stupid plan

Phone local private hospital, ask to see a GP for a second opinion, get a private prescription (how much is this going to cost?) buy syringes & a sharps box on-line & get my friend who is a nurse to teach me how to inject myself

[ihearttc]

I have PA and have B12 injections every 3 months.

I also had about a 4 week window where I could do anything after my injection then I would just go downhill really fast again.

However I was diagnosed in the summer with Rheumatoid Arthritis as well and now take Hydroxychloroquine every day as well (Its a DMARD for treating RA) and I feel like a new woman. Normally the week or so before I get my B12 injection I literally can't function at all but this time I actually forgot I needed it.

My Rheumatologist has said it might be something to do with the medication kick starting something (Although what I don't know) as they are both auto immune diseases.

My levels of B12 were ok as well incidentally so I knew they wouldn't give it to me any earlier.

[ihearttc]

Oh my joints were the thing that was really bothering me and the fact that I seemed like I was in a constant fog the entire time.

[Katymac]

My brother has RA - so it's something of a worry for me

But tbh regular B12 would cheer me up somewhat

[Only1scoop]

My reading at moment is borderline.

Had intrinsic factor blood test etc and it's not PA

I'm certainly going to be asking for some more loading injections though as I feel like poo on a stick.

Tested me this morning for helicocactor as can cause low b12 if present.

You have my sympathy.

And yes I'd seek some private b12 if not forth coming.

[chipsandpeas]

im b12 deficeint but take tablets daily rather than injections
maybe thats a conversation with your doctor

[puffylovett]

Katy have you looked in to methylation? I understand blood levels of b12 can be high, because the body is simply not using it. Supplementing with methyl cobalamin and activated b9 can make a difference in how the body utilises b12. I don't understand it fully but worth a read if you haven't already.

You can obtain tests to check your methylation status.

[Katymac]

I have absorption issues so tablets probably won't work

Never heard of Methylation & tbh when I googled it was all a bit beyond me

I'm fairly certain I don't have h pylori as I've had so many tests

[puffylovett]

Have a look at Dr myhills site, I think she has a fairly comprehensive explanation. I think there can be a big link between cfs me fm etc and impaired methylation (one of the liver conjugation pathways - essentially attaching 'toxins' to make them water soluble and therefore enable the body to excrete them. feeling better on b12 and yet blood levels appearing adequate can be one of the signs.

(My absorption issues are as a result of SIBO and a sluggish gallbladder function, I also feel better when supporting my methyl pathways. )

[Katymac]

I have a load of supplements & I'm working out the doses

& I have an appt at my local Private hospital - to see (I think) the wrong specialist but I hope they will give me a prescription to get rid of me

[Katymac]

Quite nervous about Monday tbh

[eudaemonia]

Hiya,

Bit of a random first post but I thought this might be useful information for someone. There is quite good evidence available that very high doses of oral B12 are as effective as injections even for people with trouble absorbing B12. It might be something worth trying between injections. Obviously I am not a doctor so check with your doctor first to make sure it wouldn't be bad for you in some way to have both injections and oral B12.

www.cochrane.org/CD004655/ENDOC_oral-vitamin-b12-versus-intramuscular-vitamin-b12-for-vitamin-b12-deficiency

I was found to have low B12 levels a while ago although I was 1 point below the very low cut off my hospital had for 'normal' B12 levels. I feel much better when I take the liquid sublingual B12 that gives something silly like 400 times the recommended daily dose. It does turn your pee bright yellow because what you don't absorb just comes out in your pee.

I think taking folate alongside it is probably useful for a lot of people because deficiencies in one seem to go along with the other- maybe something to do with the methylation thing. I take metafolin which is methylfolate rather than folic acid just in case it works better. I do suspect that less severe B12 deficiencies are under treated on the NHS because the 'normal' range seems to be set too low for a lot of people.

[Katymac]

I'm already taking sub-lingual B12 1200 ug but although good it isn't having a substantial effect & my pee isn't yellow

& Folate & Zinc & Calcium & Magnesium & Vit D

I agree about undertreatment & it's so frustrating

[Katymac]

I found this which agrees with me

[butterfly86]

Your post is really interesting, my ww is around 5-7 weeks so I get a bit longer than you, after going backwards and forwards to the gp they have agreed to let me have them sooner so between 8-10 weeks which is such a big help as by the time I got to 12 weeks I was run right down I could barely function and have a gorgeous 17 month old dd to run after so I need all the energy I can get! I hope eventually my stores build up or whatever and I get better, when I was first diagnosed my level was 175 and I had it re tested a few weeks ago before my injection I think it had been about 10 weeks since my last injection and the level was 504 so still not come up loads I don't think?
My grandmother also suffered rheumatoid arthritis for years so that does worry me too what it would be like to feel normal...

[Katymac]

Does yours come on straight after your injection or is there a small delay?

I was starting to worry if I was going mad

[butterfly86]

It doesn't kick in until around 10-14 days after I've had it but psychologically I feel better the minute I walk out of the surgery...like an addict!

[Katymac]

That fits with me- it hits a little sooner around a week/10 days

I know what you mean about addiction - it's a bit scary tbh

I do wonder if it's a placebo - but it's so good I don't care

Do you have similar symptoms?

[butterfly86]

I did actually think when I was having my last injection what if it's not the real thing and they're just pretending to make me better!
My symptoms; horrendous fatigue like so bad I can't even explain it to anyone who doesn't know what it's like, aching muscles all over especially after activity even just a walk or shopping trip. Low mood, mouth ulcers, repeated throat infections, painful soles of my feet on a morning I can barely walk, dry eyes and poor vision, forgetfulness and generally feeling like my head is full of cotton wool, no sex drive whatsoever...the list goes on. It's so awful I'm a young woman and shouldn't be feeling like this and although the gp is allowing me more regular injections they aren't overly sympathetic.

[Katymac]

I can't tell you how grateful I am you posted on my thread - I was really getting desperate as I have CFS/FM/IBS & if you have a diagnosis it's hard to get another one

I get all of your symptoms
horrendous fatigue like so bad I can't even explain it to anyone who doesn't know what it's like yep,
aching muscles all over especially after activity even just a walk or shopping trip do your bones hurt too? If you press them?
Low mood & you doubt yourself been offered ADs so often I can't tell you
mouth ulcers Hundreds of threads on here over the years for these
repeated throat infections I had my tonsils out at 21 but I still get sore throats
painful soles of my feet on a morning I can barely walk I've cried over this, some mornings
dry eyes and poor vision More scratchiness for me - but my vision is OK forgetfulness and generally feeling like my head is full of cotton wool oh god yes

Do you get pins & needle, Neuralgia, numb spots or leg/foot cramps too?