Read so many different links, health blogs I got frightened to read any more.

[emzy13]

After being diagnosed with pernicious anaemia 12 years ago & having block injections then placed onto 3 monthly sessions. I decided to do some research, bad idea I think I scared the living daylights out of my self! The doctors couldn't give me a full explanation, I have had anaemia of some sort from a very young age, so thought that pernicious anaemia was the same kind of blood disorder. Reading some articles on per anaemia I could relate to, memory loss, exhaustion, fogging & forgetting names for simple things e.g like a tv remote or something stupid like that. I now tend to call things I can't remember a dooblywhatsit :). After my sister passed away with a miss diagnosis of bowel cancer & with me suffering with my stomach I was quickly sent to hospital for all kinds of nasty procedures where I was also diagnosed with H polori. I now can see myself getting worse daily life is getting to be a struggle, pure exhaustion, not enough hours in the day to sleep after a day's shift it takes me all my time to put tea on & take the dog's out. To the point some days I could easily do with out food because I just haven't got the energy. Aching,if I didn't ache when I get up every morning I would think I was dead irritable legs (which the doctors did put me on tablets for & they did help) hot feet. Sleeping less that one has me in tears some nights & knowing I have work the nxt day doesn't help. I'm getting irritable with my husband & family through pure frustration as they don't understand how I can be so tired after 12 hours sleep on my days off. I think I will have to go back to the doctors to see about having my injections on a more regular basis. Has anyone done this, sorry for the long winded post x

[earthnymph]

Do you notice any diff when you have your jabs? Are you on any medication that can interfere? E.g. metformin, omeprazole ? I have similar symptoms, only felt benefit of jabs once stopped taking those 2meds, battles with docs to even get levels tested again (still low, brought jabs fwd from 12 weeks to8 weeks) doc unaware of impact of meds, levels now 'good' from blood serum test so doc refuses more frequent jabs, but a clear 8 week cycle of sleep (7hours to 13 hours) mood changes (energetic and motivated to depressed anxious and tearful). The docs want to put it all down to something else, which would mean more noxious meds, so I have become empowered thru reading things on here and the kind advice of really sound people on here, and have started self injecting every 2nd day in the hope some of my aches and pains may subside too, I already feel diff in tiredness, waking ready for the day rather than like I need to sleep forevermore. I hope this helps. Stuff I read were posts on here, links in posts, and info from pa soc. Really interesting to read a list of neuro symptoms, stuff I didn't realise linked to b12d. If you have the energy, read up and don't be put off, it empowered me to make a healthy decision for myself 😊 it's disheartening going thru such awful things with no clear answers from the professionals we trust, but trust your self to find the answers you need, by posting on here you've started that process x

[Gambit62 Administrator]

My experiences of trying to get treatment more frequently were not entirely good - my normal GP was woefully ignorant when it came to B12, so was down to a locum to explain what it meant in terms of injections for life.

Unfortunately the guidance available in the UK hopelessly confuses it with anaemia which means that a lot of GPs aren't even aware that anaemia doesn't necessarily need to be there ... and totally unaware of the full range of symptoms.

Reading on B12 can be totally scary and depressing and well done for not carrying on ... though it is a condition where really you need to know what you are dealing with for yourself as the probably on meeting medics who really understand it is very low.

Good books in terms of understanding the range of symptoms are Could it Be B12? - Sally Pachalok and others, and Perncious Anaemia the forgotten disease - Martyn Hooper but both are full of really scary stuff on misdiagnosis and mis-treatment.

I definitely went backwards on the normal regime - even when I was on 2 monthly - and it was only when it became obvious there wasn't any point in talking to GP because , caring though he was, he really wasn't going to understand and I wasn't really in a position to do much communicating at that point. What saved me was discovering that I responded well to nasal spray - took a few weeks to go from struggling to walk to being happy perched at the top of a ladder pruning grape vine ... and a few months later I realised that my depression and anxiety that had dogged me for decades were actually gone. Still go back for the maintenance shots but only to keep things on my record. I use a mixture of hydroxo and methyl as I find they deal with different symptoms for me - hydroxo good for the mood, methly for the neuropathy.

You most definitely are not alone ....

The positive things are that it doesn't have to be the long slide into oblivion - you can, providing your finances allow, take things into your own hand by way of treatment - its even possible to get hold of ampoules and inject yourself - but make sure you are using a reputable site - Germany has a few good pharmacies and it isn't prescription only there for injectible form.

B12 isn't toxic and there are no known downsides to having high B12 levels though I have come across a very small number of people who find that treatment makes them feel dizzy - though if you haven't found that to date it isn't an issue with you.

There is a condition called 'functional B12 deficiency' which occurs when the body produces antibodies to the mechanism that transports B12 to the cell level. High levels of B12 in serum can trigger this. There isn't much about treating that if you have an absorption problem but what little there is out there on functional deficiency in people with absorption problems implies that they way to go is to keep B12 levels so high the body can't produce enough antibodies to stop everything getting through ... think that's part of the reason why I seem to need so much - even supplement on days when I get maintenance shots because I can feel some of the symptoms coming back - mainly the being a cantankerous old so-and-so!

[Hidden]

emzy13, hi, sorry you are having such a bad time. When you say "irritable legs" and mention sleeplessness, do you fit the criteria for Restless Legs Syndrome? Is it a feeling like creepy crawlies inside your legs, twitching inside them, maybe pain inside them, and you have to move them to stop it? Is it worse at night?

Or is it pins and needles as so often with B12 deficiency?

What is your serum ferritin level?

What medicine has the GP put you on for your irritable legs?

[Polaris]

GPs generally don't understand the effects of low B12 and I'm afraid we have to set out the facts in black and white, My family fought to eventually obtain monthly injections for our relative, who was misdiagnosed with ME, etc for years.

We wrote setting out medical history, and followed up with the latest BMJ research and BCSH guidelines. These links might help in collecting information for the more frequent treatment you need:

b12deficiency.info/b12-writ...

(Templates for writing and an excellent film on this site)

cmim.org/pdf2014/funcion.ph...

See page 4 re. Pernicious Anaemia.

Points from the Cmim/BMJ document. " Summary, if GP won't read full document:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

Good luck Emzy

[emzy13]

Thanks for the info, but half of the things you have mentioned have left me completely lost. Since being diagnosed I kid you not I have had 1 blood test last year as I was so exhausted I finally gave in & went to the doctors they found I was low on sulphate ? I'm sure it was that, had one course of tablets & that was it. I don't take any other medication apart from my b12 & my depo injection one in each arm every 12 wk. I very rarely visit the doctors if I can avoid them I will, the irritable legs hurt more than anything else they don't "jump" or twitch and not a creepy crawly sensation its very hard to describe but also plenty of pins & needles too. The meds they gave me for my legs were Ropinirole which worked wonders they were a course for 6 wks and helped tremendously the doctor said they would only give me that one course as they don't like people on them for an extended period. Whether it was just that doctors opinion I'm not too sure. I'm going to read up on as much as possible about b12 def on this site and go fully armed back to the doctors, I will admit apart from the injections I have ignored the fact I have pernicious anaemia but as I said I can see myself getting worse & ignoring it isn't going to make it go away. If I could get up just for one day and not feel so exhausted and feel like I have done 10 rounds with Mike Tyson during the night that would amazing. I used to be such a energetic person & at 42 it definitely can't be put down to old age

[emzy13]

I also forgot to say when I have my jabs I could run a marathon about the 3rd day after having it, the aches and pains are still there but i do have more energy that's up until about week 9 then I really start to struggle and have 3 weeks still to go before my next jab. I also haven't a clue about any levels as I have never been told, it's a case of your a bit low on "this" this is what we will do & I'm the kind of person that just says, right ok thank you. But not anymore I will start to feel human again x

[emzy13]

Sorry it wasnt sulphate it was folate levels me & my memory lol

[Chancery in reply to emzy13]

Hi Emzy. If your jabs are taking you to week nine, then that's your sweet spot. Your body obviously runs out of usable B12 by then and you need to have your injections every nine weeks. It's that simple.

You need to go to your doc with a full list of your symptoms. Either read them to him or make him read them right there in front of you. Then tell him that your body is coping until week 9, therefore you obviously need your injections every nine weeks. If he gives you any nonsense about the 'rules' for only getting them every three months, stop him immediately by pointing out that those rules ONLY apply if the meds are working at every 3 months and yours patently aren't. You need bi-monthly injections (they tend to work in months, and that's to your advantage as you will get it before you run out of steam).

If you are getting restless leg syndrome, which you obviously are, and other neurological symptoms, then it is patently obvious you MUST have more injections. You need to be assertive with him, and do your research before you go. Look up the NICE guidelines for B12 deficiency and take them with you. They will back you up. Others on here can give you the names of the Haematological Society Guidelines and so forth - I don't have note of them.

Just start a new post asking for help with guidelines to convince your doc to give you bi-monthly injections.

You have a condition with is obviously deteriorating. You need to be forceful in explaining this and what you want. Don't faff around with vague grumbles to your doc. Get a list and hit him over the head with it - metaphorically speaking, although you could try clouting him round the ear with it if you think that would work better! Good luck. X

[Serendipity16]

I'm taking omeprazole now (been on injections over a year 1st) Will this affect injection frequency or not an issue because absorption injections bypass abdominal absorption?

[pvanderaa]

Reply to " think I will have to go back to the doctors to see about having my injections on a more regular basis. Has anyone done this, sorry for the long winded post x".

I always recommend that you keep a log book to document your symptoms. Otherwise he may treat you like you have an anxiety disorder (which is another b12d symptom).

Please don't let him prescribe the typical antipsychotic drugs. These don't work for a B12D and just makes matters worse.

Most GPs are reluctant to increase dosage due to the "NHS guidelines".

I was lucky with my GP, he realized early on that with the logbook I was monitoring myself better than he could. He bumped me up to an injection of hydroxo-B12 every 2 months and then every month.

When I moved from the UK to the USA, I used the same technique and got moved from monthly cyano-B12 injections to weekly ones. I now self inject.

I see him annually for blood work and he prescribes a year's supply of weekly B12 jabs that the pharmacy gives me 4 at a time, ie monthly.