Vitamin B12 Deficiency

The_Conductor · 20-05-2010 2:55pm

I'd echo what Bookworm85 has said- if you are going to be taking these injections indefinitely- there is no reason that you shouldn't be shown how to do them yourself. Insulin dependent diabetics give themselves injections several times a day- admittedly this is an intramuscular injection, and not a subcutaneous one like insulin, but the context is the same. If its something that you are going to need on an ongoing basis, it makes a lot of sense to develop a degree of self sufficiency.

I was given an orange and told to practise on it- and to show the nurse how I was doing it. Rudimentary- and I did make mistakes- but I kept with it.

Those GP visits add up remarkably quickly when you're on a tight budget!!!

S.

joconnell · 27-05-2010 12:49pm

Most of the pharmacies in city center dublin have run out of neocytamen which is a bit annoying - apparently the makers are annoyed at being under the discount scheme so have given no date for re-stocking. Only the regular cytamen around which is pretty inconvenient. Any alternatives?

ImAYesGirl · 28-05-2010 11:40pm

Bookworm85 - thanks for your reply, ya 35 is crazy really, i certainly wasnt given the option of getting a script. I will have to ask next time, or else I will go else where. There is no nurse there. Had my 2nd injection yesterday. I dont need an appointment. They told me I can just walk in when it suits and let them know im there for b12 and they will slot me in straight away. I do go a bit pale when i see needles...but its something id be willing to to get over and do myself.

smccarrick - thanks also for your reply. that was a good idea to practice on the orange....i hope your mistakes were on the orange and not on yourself....eeekkkkk....
I agree about being able to do it myself. I will be away for the last 3 weeks of this 10 week course. So will obviously not be able to go to my current gp to get them.

Bookworm85 · 03-06-2010 12:19am

Got my blood tested again last week and my GP buzzed me yesterday with the results. B12 down to 103 so back to her Friday for more injections

She thinks I might have Pernicious Anaemia, so she has drawn up a list of foods to eat, (to make sure I am getting enough b12 in my diet) and said she wants me to keep a food diary for the duration of my next lot of injections. She said that if my levels dont pick up after that then she will send me for a colonoscopy (eek!) to check my gut for problems. I also have to take extra iron suppliments and b12 tablets and lots of vit c too!

I do go a bit pale when i see needles...but its something id be willing to to get over and do myself.

I used to be like that too, but I am totally over it now. Before I used to look away or close my eyes when doctors were taking blood/injecting. But I got braver and looked away when they were sticking the needle in, but would look back when they had it stuck in and would watch them take the blood etc. I just kept at it an when I was comfortable with that, I just started to watch the whole process.

Mistymaud · 17-03-2011 10:15am

I know I'm resurrecting an old thread here - but does anybody in Ireland source methlycobalamin injections? Seems, on reading a few of the threads, that you sometimes have a problem getting the standard stuff so it is a bit of a concern.

The_Conductor · 17-03-2011 10:28am

Mistymaud wrote: »

I know I'm resurrecting an old thread here - but does anybody in Ireland source methlycobalamin injections? Seems, on reading a few of the threads, that you sometimes have a problem getting the standard stuff so it is a bit of a concern.

Hydroxocobalamin is now the standard in Ireland (it used to be cyanocobalamin- but there were too many people reporting reactions against it). I'm not aware of methylcobalamin being widely available- perhaps someone involved in the industry can elucidate?

Mistymaud · 17-03-2011 11:07am

I think you usually have to import it, so it would be interesting to see if any of your members have done so - and if they encountered any problems.

I think it's hydrox that they use in the UK but I'm quite happy with the methyl and really, really, don't want to stop using it if I don't have to.

McConkey · 17-03-2011 11:18am

In most pharmacies they will source the product from a wholesaler of unlicensed medicines such as Medisource for you, this can take a bit longer and it is more expensive but if you need it you need it. Not sure what happens if you are on the medical card with regard to payment for unlicensed products.

Cobalamin H is what I have seen being used at the moment although I'm sure there are a few different types being imported.

littleaoibh · 21-03-2011 11:16pm

I was diagnosed with B12 deficiency a week and a half ago and got my 4th injection today. My level was 46, which I didn't realise was incredibly low until I started reading threads like this and seeing most people's levels were 100 when they were diagnosed! I was feeling extremely tired and only got checked up as my younger sister was diagnosed with pernicious anemia last month(which they suspect I might have too).

To be honest I seem to feel worse after the injections than better.

The_Conductor · 22-03-2011 8:45pm

littleaoibh wrote: »

To be honest I seem to feel worse after the injections than better.

I normally feel like crap for 2-3 days after each injection (not sure why). Give it a few days- if you still feel like crap- get onto your consultant or GP. The anaemia will have you feeling totally washed out anyhow........:(

bert n ernie · 31-03-2011 7:29pm

Hi all, diagnosed with B12 deficiency a few months back, doc has said i can inject myself, which is fine, not afraid of needles,have been shown by doc etc. The problem seems to be sourcing the needles ?Pharmacist looked at me like i was mad when i asked did they sell needles. Am i missing something here, is this not the done thing ?

The_Conductor · 31-03-2011 7:51pm

bert n ernie wrote: »

Hi all, diagnosed with B12 deficiency a few months back, doc has said i can inject myself, which is fine, not afraid of needles,have been shown by doc etc. The problem seems to be sourcing the needles ?Pharmacist looked at me like i was mad when i asked did they sell needles. Am i missing something here, is this not the done thing ?

Ask for a pack of Syringes with fine needles, for intramuscular injections.
They're actually on the script I get from my GP- along with the neocytamen.
Any pharmacy will have packs of different types.
A guilty confession from me- is more often than not I use the microfine ones designed for use by diabetics- and aim them straight into muscle- its not very deep- but you don't feel them at all. Do whatever your doc tells you though (and keep in mind these are supposed to be deep intramuscular injections!!!!)

S.

bert n ernie · 31-03-2011 8:40pm

thanks so much !!will so in again tmro and ask for them

rescue16 · 31-03-2011 9:56pm

Hi people my father has this conditions also has some thing called alfa 1 anti trisapin defencey are these conditions related by any chance. I myself am a carrier of this alfa 1 thing but I also have Sarcidosios am I in danger of getting this.

jenizzle · 20-07-2011 12:22pm

I haven't seen Neocytamen for about a year now, I'm using the Cobalin H now.

Just out of curiosity, how much do you pay for your lot of B12? I'm paying about €30 for 5 little ampules, and a euro or two for syringes and needles. Does anyone know of anywhere where I could group-buy the needles (I guess probably not, but it's no harm in asking!)

mugbags · 21-07-2011 5:22pm

I've been on these injections for about 6 years now, one every three months and although I think sometimes that they aren't doing me much good, by the time the second month has passed I start to feel like crap, exhausted, pins n needles everywhere, headaches etc. I also have M.E. though, often wonder if the two are connected. I do my own injections too, bizarrely they don't hurt so much that way!

Dizzyblonde · 21-07-2011 7:41pm

I've had 8 of 10 B12 injections in the past 6 weeks. Everyone tells me I'll feel great after about 3 months, is that true? My B12 level was 60 and luckily I didn't have any peripheral neuropathy.

mugbags · 21-07-2011 7:43pm

Don't expect too much of an improvement, they haven't been much of a miracle cure for me

Skerries · 09-08-2011 12:19am

have just been diagnosed with PA
i think i'm luckier than most here as i don't have any symptoms, it was picked up on a blood test
I have just started the injections, maybe it's something i can do myself down the line
must ask what my level was next time i'm in to compare

Skerries · 09-08-2011 3:35pm

i asked today what it was and he said it was below 60 but doesn't know exactly as they usually don't record it after it goes that low, and he said i was the lowest in the area that he had ever seen

Dandelion6 · 02-10-2011 5:35pm

Just diagnosed with this, 134 level. My doctor is holding off on the injections for now because I have to have the blood re-tested in six weeks for something else anyway. She's told me to take a multivitamin in the meantime. I'm wondering if I should be taking extra B12 on top of that? Can I get it without a prescription? I'm really hoping not to go back in six weeks and find out I'm still really low and need injections

The_Conductor · 02-10-2011 6:20pm

Dandelion6 wrote: »

Just diagnosed with this, 134 level. My doctor is holding off on the injections for now because I have to have the blood re-tested in six weeks for something else anyway. She's told me to take a multivitamin in the meantime. I'm wondering if I should be taking extra B12 on top of that? Can I get it without a prescription? I'm really hoping not to go back in six weeks and find out I'm still really low and need injections

You can get B complex vitamins in any pharmacy (as a tablet or syrup) without prescription- the injections are prescription only however. Many common foods (such as cornflakes for example) have added B vitamins. If you're going back to the doc in 6 weeks for a blood check about something else- its as easy to get two blood tests done as it is one, and the doc would be better able to decide an appropriate course of action on the basis of 2 readings in a 6 week window. A B12 deficiency can be related to other issues- so its a good idea to have your doc monitor it.

If you do need B12 injections- its nothing to be scared of, its just like getting the flu jab (only the flu jab probably hurts a little more- as its subcutaneous, whereas a B12 injection is intramuscular).

Dandelion6 · 04-10-2011 7:24am

smccarrick wrote: »

You can get B complex vitamins in any pharmacy (as a tablet or syrup) without prescription- the injections are prescription only however. Many common foods (such as cornflakes for example) have added B vitamins.

The highest B12 dosage I could find in the pharmacy was 1000 mcg. Is there any OTC supplement that has more? Should I be looking for more? Bearing in mind I also eat cheese and eggs regularly, drink fortified soy milk almost every day and occasionally have real milk in my tea

If you do need B12 injections- its nothing to be scared of, its just like getting the flu jab

Thanks. It's not so much the pain as the thought of having to make it a regular part of my life.

The_Conductor · 04-10-2011 8:37am

Dandelion6 wrote: »

The highest B12 dosage I could find in the pharmacy was 1000 mcg. Is there any OTC supplement that has more? Should I be looking for more? Bearing in mind I also eat cheese and eggs regularly, drink fortified soy milk almost every day and occasionally have real milk in my tea

Thanks. It's not so much the pain as the thought of having to make it a regular part of my life.

If it is a regular part of your life- your doc may possibly show you how to give yourself the injections- which will save you having to visit him/her (not to mention the bills!).

Its not so much that you're eating all the right foods- B12 is only absorbed in a very specific part of your gastrointestinal tract- and if there is an absorption problem, it doesn't really matter what you eat- it may be impossible to get it in from dietary sources.

Dandelion6 · 06-10-2011 6:41am

Dandelion6 wrote: »

The highest B12 dosage I could find in the pharmacy was 1000 mcg.

Sorry I meant 1000% of the RDA

Threw away the box so can't remember how many mcgs that is.

Anyway I know it might be an absorption problem but I reckon I may as well try to get as high a dosage as I can just in case...

Beffy · 11-10-2011 3:46pm

I got checked up at the start of June, yet again i'm anaemic and have a level of 40 in terms of b12 deficiency. I was put on iron tablets and directed to get 10 b12 injections.
After a few I started to get acne. In the leaflet of my injections it said if you get acne contact your doctor so I did. She was perplexed at this despite it being written as a possible side effect to my injections, also the internet has many written pieces about b12 injections causing acne.
My doctor prescribed me an acne cream, to put on spots when I get them. Needless to say I wasn't very happy with that however I felt my health was more important than a few spots.
I've had 8 out of the 10 injections and i've told the nurse I won't be getting anymore. My face is utterly destroyed in boils, particularly under my jaw line. I've the current boils for the last two weeks. I put up with it for months but enough is enough. I never realised how acne could have such a psychological effect on someone until now. i reckon it'll be christmas before my face clears up properly.
It's hard to tell if they had any effect energy wise as I took up with a personal trainer at the same time so I am doing more.

neil_18_ · 11-10-2011 10:05pm

Think i'll have to get a blood test done soon. Tired a lot and feeling the weirdness in my fingers. Thought i'd be finished with this for good last time i was told i didnt need injections anymore

bert n ernie · 13-10-2011 6:58pm

beffy, the spots, im still plagued with them, my doc also didnt see that it was that much of a problem, and wasnt convinced it was the injections.as far as im concerned it was as i had really clear skin for years and the inections were the only thing that changed!!!!!

i spent most of my teenage years covered in severe acne, and needed steroids and creams for months to get rid, and really the thoughts of having my skin in any way damaged makes me really self conscious. whats the point in having energy with the injections if you dont want to leave the house (ok bit melodramatic

), but honestly, being a 32 year old with acne is not something im comfortable with.

Beffy · 13-10-2011 7:17pm

bert n ernie wrote: »

beffy, the spots, im still plagued with them, my doc also didnt see that it was that much of a problem, and wasnt convinced it was the injections.as far as im concerned it was as i had really clear skin for years and the inections were the only thing that changed!!!!!

i spent most of my teenage years covered in severe acne, and needed steroids and creams for months to get rid, and really the thoughts of having my skin in any way damaged makes me really self conscious. whats the point in having energy with the injections if you dont want to leave the house (ok bit melodramatic ), but honestly, being a 32 year old with acne is not something im comfortable with.

I know what you mean, having spots in your early 30's isn't cool! At least being female I can attempt a coverup with makeup. I never had acne before, maybe the odd spot every now and then but that was it. My doctor got her doctor dictionary out when I went to her about it.

Not exactly confidence inspiring!!

LucyBliss · 16-10-2011 11:32pm

I had not realised that acne and boils were a B12 side effect until a friend of mine recently started a course and said that she'd had the same problem. She said she's going to try getting them in the hip now so see if it makes any difference. She also put manuka honey on her face as a topical treatment and it really did the trick. I saw her the other week and her face was clear and she looked great.
I got absolutely hammered with bad acne when I was on steroids a couple of years ago so I'm hoping that the one that has appeared on my upper arm (where I get my own B12 injections) goes away pretty sharpish and isn't the start of anything else!

Jumboman · 10-08-2012 1:23am

Can anyone tell me why you have to go to the hospital to get a B12 shot can it not be done at home ?

The_Conductor · 10-08-2012 7:27am

Jumboman wrote: »

Can anyone tell me why you have to go to the hospital to get a B12 shot can it not be done at home ?

It can be done at home- you do need training however in how to do it.
Its an intramuscular injection- same as the flu jab or some other injections (not insulin). Talk to your GP there are little courses they run occasionally on giving injections- you would need demonstrations etc before doing it yourself though.

Jumboman · 10-08-2012 12:55pm

smccarrick wrote: »

It can be done at home- you do need training however in how to do it.
Its an intramuscular injection- same as the flu jab or some other injections (not insulin). Talk to your GP there are little courses they run occasionally on giving injections- you would need demonstrations etc before doing it yourself though.

I got the injections it was very painful I'm not sure if I would be able to do it my self.

Do you know if its possible to cure this condition ?

mugbags · 10-08-2012 4:24pm

I do my own at home but never had any training. I get the prescription and always ask for syringes and needles when I'm getting it and have no trouble getting them in my pharmacy. I have a box of sterile antiseptic wipes which i got there once also and find that when I do them myself they don't hurt anywhere near as much as when the nurse at my practice gave them to me. She used to put them in my hip but then changed to upper arm and thats where I put them, nothing complicated about it, just make sure the area is sterile and make sure there are no bubbles in the syringe. Just did mine last night actually, I always use the very fine yellow needles and they really don't hurt at all.

confuseddotcom · 10-08-2012 5:59pm

Hope to be starting these at the Doctor's soon. Am so sick of loadsa different injectons in general at the moment though.

Personally don't think I'd be able to give myself an injection so am okay with them being administered by someone else rather than myself! I'd bloody hate to have Diabetes poor things they must be black and blue. I feicing hope I haven't Diabetes lol! :O How many of the Vitamin ones do you have to get anyone know? Maybe it differs I must ask next day.

mugbags · 10-08-2012 6:03pm

Mine are one every 3 months for life!:eek:

Jumboman · 10-08-2012 9:25pm

Has anyone tried this stuff ? B12 Liquid, its suppose to work for people who cant digest B12 in the stomach.

http://www.thehealthstore.ie/index.php/solgar-vitamin-b12-liquid-2000ug.html

The_Conductor · 10-08-2012 9:31pm

Jumboman wrote: »

Do you know if its possible to cure this condition ?

B12 deficiency is a symptom, not a condition. Something causes the B12 deficiency. My deficiency could have a wholly different reason behind it to yours. You may be able to cure your deficiency- I know I can't cure mine.

The_Conductor · 10-08-2012 9:34pm

confuseddotcom wrote: »

How many of the Vitamin ones do you have to get anyone know? Maybe it differs I must ask next day.

It depends on you foliate and other blood levels. A regime suitable for one person- will differ for another. You need to discuss this with your GP/Consultant haematologist.

The_Conductor · 10-08-2012 9:35pm

mugbags wrote: »

Mine are one every 3 months for life!:eek:

Mine are monthly for life. So be it, its not the end of the world.

The_Conductor · 10-08-2012 9:39pm

Jumboman wrote: »

Has anyone tried this stuff ? B12 Liquid, its suppose to work for people who cant digest B12 in the stomach.

http://www.thehealthstore.ie/index.php/solgar-vitamin-b12-liquid-2000ug.html

You don't digest B12 in the stomach. Its a vitamin that is absorbed in a precise area of the intestinal tract (the terminal ileum). Certain conditions may impair or totally stop absorption of B12- Crohn's Disease for example tends to start in the terminal ileum and work its way up and down the intestinal tract (and can also occur externally). Me- I've had my ileum removed- so I physically don't have anywhere to absorb B12- hence the injections. Someone with a lesser issue may have their lack of B12 satiated with a tonic- others not. I wouldn't rely on it- without getting followup blood tests to confirm it was sufficient- I'd be thrilled if it were sufficient, but you still need followup........

LegacyUser · 08-12-2012 8:05pm

Hi,

I think I may have b12 deficiency as I could relate to the symptoms. I suffer from Crohns Disease and have done so for a decade now and read that auto immune disease especially those that affect the gut, as in my case, can lead to deficiency.
So I went to the doctor who sent me to the hospital to have the tests done to check my levels, before the test I had been overdosing myself with B12 supplements to try and get my levels up. The results of the test were 374 and this was considered within the normal range and so the doctor concluded I will not be getting the shots. I was not happy with the results and did my own reading and found out that what is categorised as normal range is far too low than other countries for example in Japan a score of 500 would be considered as deficient and I recall reading in an article that the pernicious anemia society in the UK advise it members that a score of less than 1000 is to be considered low for its members.
I became worried when I read posters here were posting scores of less than 100 before doctors deciding to give them treatment, does this mean if you get a score of over 200 that you are out of the woods, not if you go by international standards of what is considered a normal range.
Just thought I will let you know.

Jumboman · 12-03-2013 11:26pm

Anyone tried taking B12 patchs instead of injections ?

The_Conductor · 13-03-2013 8:35am

Jumboman wrote: »

Anyone tried taking B12 patchs instead of injections ?

I wasn't aware there were (are) patches commercially available.
Would they give a similar dosage, given the injections are 1000Mg intramuscular injections- aka would a topical patch have similar efficacy? Would a single patch do the job (on a monthly basis) or would you be wearing new patches every other day? If you have a link to the patches, with objective reviews- I'd love to see it.

Jumboman · 13-03-2013 1:36pm

smccarrick wrote: »

I wasn't aware there were (are) patches commercially available.
Would they give a similar dosage, given the injections are 1000Mg intramuscular injections- aka would a topical patch have similar efficacy? Would a single patch do the job (on a monthly basis) or would you be wearing new patches every other day? If you have a link to the patches, with objective reviews- I'd love to see it.

You can buy them from viepatch.com not sure if their any good.
They sell them in 5000mcg

http://viepatch.com/products/

Amazon reviews it here but you cant buy it from amazon if your in Ireland

http://www.amazon.co.uk/Viepatch-Vitamin-Strength-Patches-5000mcg/dp/B008ATOU7M/ref=sr_1_2?ie=UTF8&qid=1363178088&sr=8-2

locum-motion · 13-03-2013 10:53pm

Jumboman wrote: »

You can buy them from viepatch.com not sure if their any good.
They sell them in 5000mcg

http://viepatch.com/products/

Amazon reviews it here but you cant buy it from amazon if your in Ireland

http://www.amazon.co.uk/Viepatch-Vitamin-Strength-Patches-5000mcg/dp/B008ATOU7M/ref=sr_1_2?ie=UTF8&qid=1363178088&sr=8-2

This is not a licenced medicinal product in this country.
If it is available as a licenced product in another jurisdiction, it may be possible for your pharmacy to obtain it for you especially, but it would have to be prescribed by a doctor.
Importing medicines is illegal unless you have an importer's licence (especially if the product isn't licenced in this country).
Placing an order, receiving a delivery, and supplying a medicine via mail order (including online) are ALL illegal in this country.

Jumboman · 13-03-2013 11:07pm

locum-motion wrote: »

This is not a licenced medicinal product in this country.
If it is available as a licenced product in another jurisdiction, it may be possible for your pharmacy to obtain it for you especially, but it would have to be prescribed by a doctor.
Importing medicines is illegal unless you have an importer's licence (especially if the product isn't licenced in this country).
Placing an order, receiving a delivery, and supplying a medicine via mail order (including online) are ALL illegal in this country.

How can it be illegal when B12 is not a controlled substance ?

locum-motion · 15-03-2013 2:24pm

Jumboman wrote: »

How can it be illegal when B12 is not a controlled substance ?

It wouldn't be the substance that would be 'controlled', it would be the product. 'Medicinal products' are subject to regulations.

the culture of deference · 10-05-2013 5:19pm

Just had my 150th injection in 4 1/2 years. Lowest reading I had was 103. Now I can feel when I need an injection when levels get to 400 mark.

I Started getting my bloods checked weekly about 3 years ago when I realised that you have to tackle this disease head on and insist that your doctor gets you tested regularly.

Before injection 413

Injection of Neo Cyt and the level goes to over 1,400

End week 1 780
End week 2 500
End week 3 350
End week 4 200

So if you are attending a doctor and are getting monthly or 3 monthly injections get at least 1 blood test a month.

Jumboman · 10-05-2013 6:15pm

Anyone know it its possble to get Methylcobalamin B12 injections as opposed to Cyanocobalamin B12 ?

Cyanocobalamin is poison in my opinion.

Vitamin B12 Deficiency

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