Struggling with 3 monthly injections.

[Littlelawchick]

I was diagnosed with Pernicious Anaemia about 9 years ago after a massive struggle with my doctors and consultants in Northern Ireland and was put on 3 monthly injections and it was fairly well managed with blood tests and follow ups. I moved to Scotland 3 years ago and while I have been getting my injections, I haven't had a single blood test since I moved here and my doctor just sees it as something on my list as diagnoses and basically ignores it. The last few times before my injection I have been suffering severe tiredness, tightness in my thighs and more recently numbness and tingling in both my hands and its this that is annoying me the most as I spend all day typing and cant afford tie off work. I cant get an appointment with my doctor for love nor money and am a week and a half late with my injection thanks to not being able to get an appointment. I'm at the point that I'm ready to just let my boyfriend just give me the injection and sod the consequences as I am not sure I can wait until Thursday.

Has anyone else struggled with symptoms flaring up again after several years or had such a bad experience of the NHS in Scotland?

[Fudgemanjim]

Im quite tierd so cant do a lengthy response as i would wish but i thino many of not most have had simlar experinces to this...i know the feeling of ignoring gps i lost job and wound up becoming near disabled (well actually disabled really) wheelchair bound struggling to breathe and still was ignored... wound up leaving uk permenantly after being forced to leavejob (not scotland in my case but still nhs ) just for treatment amd easy access to b12 outside of internet....u was PA whole life but after many years i got sugnificantly worse most likley through undertreatment... now on daily jabs when working and every other day on days off were i rest used to be one jab every 2 months on nhs... there are of course goid gos out there one just has to be very lucky i think

If your feeling low you can get b12 online or many countries in europe sell it in pharmacys with no perscription as harmless... uk pharmacies (so i would think scotland too) often do needles for free but youll have to go online or abroad for b12..(im just distrustful of inecting somthing from online.... silly to some i know) . theres very little danger in self medicating b12 due to its lack in toxicity and tbh it saved me... the concequences in my case was pain stopping and being able to walk and breathe... it took a little time though

Theres many more knollwdgable people on here with better advise that i could give but id say if you can check folate...keep other vitmans up if you do medicate more as asyou heal it cam use stuff up more

Silly suggestion and i assume this doesnt apply to you due to jabs but if its a dietey b12 issue theres always supplements and sprays and so on (hasent helped for me but im not die to diet)

Definitley dont let it get to the collapsing breathing shaking stages though... isnt nice

I wish you well and hope you feel better soon

[Johnathan]

This is a familiar story. I have been through this struggle on behalf of my wife. Her mother, grandmother and great granmother all had PA. We got zero cooperation from our GP beyond a three monthly injection. That was insufficient and she was getting the symptoms that you describe and in the third month she was almost totally dysfunctional. I solved this by buying syringes and needles on the internet (dirt cheap) and B12 (Methylcobolamin) from a supplier who brings it in from Germany where I believe it is an over the counter medication. B12 is incredibly non-toxic. (It is used in vast doses as an antidote to cyanide poison.) There is no way that you can overdose no matter how much you take. Any surplus is excreted in the urine. It is also not expensive.

If the NHS is unable (or unwilling ) to manage your condition, self-medication is your right. If you cannot debate/argue successfully with your doctor, I urge you to consider self medication before you suffer permanent damage to your central and/or peripheral nervous systems.

When medicating my wife we considerd the balance of risk. On one side is a small cost and a very low risk medication. On the other hand is permanent brain damage and a wheelchair. We did not find the decision very hard to make.

[MariLiz]

There are sublingual sprays you can buy from health food shops, or patches or lozenges ( dissolve under the tongue) available online. These can help to top up your levels between injections. I relied on the spray until I persuaded my GP to trial me on more frequent injections.

[Panpal]

Littlelawchick, I have just recently complaint to NHS in Glasgow and I am waiting for a response. I am self injecting.. but how much and how often? I have bought Vitamin B12 from Germany...but I am trying to get by on welfare benefits which were cut when I applied for PIP.

It is not like GP has not tried to help...but NHS still relying on Vitamin B12 serum test which is useless after injections have started!

It is so frustrating!!!!!!!!!!!!

[Littlelawchick]

Thank you everyone for the replies, I'm just feeling at the end of my tether with it as I've not had symptoms this bad in years. My entire body feels like its in pain at the minute and I'm seriously struggling.

I am considering the self injecting as I think I need the injections every 8 weeks minimum but I'm also on anti depressants and a little worried about the effect of self injection.

I'm NHS fife and I'm appalled at the level of care I'm receiving not just for this and although I considering making a complaint I don't know how far I will get. I have been trying to get an appointment with my doctor for the last month to no avail.

[Gambit62 Administrator]

not aware of any interactions between B12 and anti-depressants.

some antidepressants - SSRI's can deplete folate levels which would adversely affect your bodies ability to run processes that need both B12 and folate.

Unfortunately serum B12 isn't a useful test when it comes to managing B12 absorption problems - normal range doesn't really apply and current standards don't call for continuous testing unless there is a suspicion that you are not complying with treatment ... and as you are getting injections that seems unlikely. It is quite possible for symptoms to return when levels in serum B12 are very high as the test only measures the amounts in your blood and not what is going on in cells - so useful to diagnosing an absorption problem but not useful for treating it. Lack of testing should be the new norm ... and the guidelines changed about 3-4 years ago.