does anyone have B12 injections sooner than 12 weeks

[lorrie-62]

i find after 8 weeks my symptoms have returned, extremely tired etc, i spoke to my Gp who stated there's no medical evidence to have injection earlier than 12 weeks, but a recent blood test showed count was low after 8weeks.

[Hidden]

Hi Lorrie-62,

Do you have neuro symptoms? The BNF and NICE guidelines allow for injections every other day until no further improvement, followed by 2 monthly maintenance jabs, when there are neuro symptoms. And in fact if you look at the NICE guidelines (link below) even with no neuro involvement it says the manufacturer's licence is for every 2-3 months. I'd print it off and wave it under your GP's nose:

cks.nice.org.uk/anaemia-b12...

And the BNF dosing guidelines are shown here:

evidence.nhs.uk/formulary/b...

Of course, your GP should be treating you on your symptoms anyway, how ridiculous to be ignoring the person sitting right in front of you. If he won't budge from 3 monthly, then you might want to consider the DIY route. Lots of info on how to go about this on the main PAS forum.

H x

[lorrie-62 in reply to Hidden]

Thanks for your help will look into this

[JAEDCAIN in reply to Hidden]

As someone with PNA having been diagnosed about 6 months ago, I am having 3 monthly injections, but the symptoms still persist I have discussed it with my GP but they will not increase the frequency of the injections. You mention the DIY route could you explain that. I am so fed up of sleeping 18-20 hours per day.

[Hidden in reply to JAEDCAIN]

Hi Jaedcain, you most certainly don't have to live this half life that some doctors think is acceptable. Here is a link about where you can source your own supplies:

pernicious-anaemia-society....

And here is a link to someone's story from the point they decided to go down the self injecting route:

pernicious-anaemia-society....

You don't have to be a PAS member to read the forum, but if you wanted to post your own story or ask for advice on the forum you would have to join.

As leona says iron and folate levels are vitally important so you must get these checked. I would add vitamin D to that list. Get copies of all your results, as you might be in range and classed as normal by your GP, but be right at the bottom of the ranges. Potassium levels are also important when having more frequent injections, so lots of potassium rich foods are a must. Some people also have to watch magnesium levels.

H x

[B12Turbo in reply to Hidden]

Hi Lorrie-62 I can only agree with Hampster 1 on his comments re. waving the rules under your GP's nose, however, you could do as I did and state you will take matter to a higher level, starting with your area health board and onto NICE and the health ministry if necessary. You need firstly to contact your practice manager and take along a documented case history outlining your requirements and the responses you have received from your GP. That should result in the practice manager placing your complaints in front of a group practice meeting and if that does not bear fruit. then keep moving up a level until you get the desired results you want. I even took a recorded message from a head of government minister, who of course I shall have to leave as anonymous, but leave no stone un-turned, positive outcomes from these sorts of cases can be

good for us all. GP's do not rule and they are often wrong in their views, so GO FOR IT!!!!

[leona]

I get injections every 4 wks and it makesa huge difference. Have u checked your iron and folate levels? They have to be at the upper end of the scales for absorption to be at its best

[Hidden in reply to leona]

I started out getting b12 injections every 2 weeks until I reached the

bottom numbers of normal -barely staying there even though I

am getting vitamin B12 shots every 4 weeks. I have to keep getting

my levels checked every 6 months.

[Hidden in reply to Hidden]

Is that frequent enough to alleviate your symptoms? It should really be about symptoms, not blood test results. Also, giving you extra shots (which cost about 60p an ampoule) is a lot cheaper than repeated blood tests!

You say you started out getting 2 weekly, did you ever have the loading dose (6 injections over 2 weeks)?

H x

[Hidden in reply to Hidden]

I have pretty severe symptoms in my feet and sometimes the fatigue is horrible. I've asked my doctor to have more and 3 of them said that my levels are on their way up...so I should keep on my schedule. Yes, it's miserable. I do have RA, PN, RLS.. it's not a fun life right now.

[Hidden in reply to Hidden]

How would I go about getting my own supply of vitamin B12?

Sub lingual didn't work for me..We did that for 5 months before

I went onto injections by the nurse at the hospital. I live

in the USA... Wisconsin.

[Hidden in reply to Hidden]

Hi Yikes, are you a PAS member? They have members from all over the world including the USA, you can read the forum for free, but you need to be a member to post on the forum, which costs £20 (annual fee). Let me just see if there's a topic about supplies:

pernicious-anaemia-society....

I think it's available over the counter in pharmacies in Canada so you can get it from there. My geography is terrible but I'm pretty sure Wisconsin is near the border?!

H x

[Hidden in reply to Hidden]

So I have to pay to ask questions on this site?

or is that another site? Sorry, I am dipping my

feet into the water here on this site... Just

checking if I want to dive right on in or walk past.

[Hidden in reply to Hidden]

I'm talking about the Pernicious Anaemia Society's main website, which is here:

pernicious-anaemia-society....

It's not just a forum, they do a lot of work towards raising awareness and also are involved in research, to try and bring about change via better diagnosis and treatment. The Chairman, Martyn Hooper, wrote the book Pernicious Anaemia: The Forgotton Disease, one of only 2 books that I've found on the subject (the other being the brilliant Could It Be B12? By Sally Pacholok & Jeffrey Stuart).

A lot of people are put off by the joining fee, in this world where information is so freely available on the web. But they wouldn't be able to do the research they're doing without it, and they're hoping to get published soon. This link to the Chairman's blog explains more:

martynhooper.com/category/p...

Cutting to the chase, you don't have to join. All the information you will ever need is freely available to read on the forum, and all the questions you may ever have are probably already answered there. There is really only one other website I refer to for all things B12 and that is this one:

b12d.org/

Between those 2 websites and those 2 books you should have it pretty much covered.

H x

[Hidden in reply to Hidden]

Also, nothing to stop you phoning the PAS if you wanted direct advice, for general enquiries phone:

During UK office hours (44)(0)1656 769717

[Hidden in reply to Hidden]

Thank you.

[Fine]

I have mine every 10 weeks

[MCMC]

Hi

I have mine every 8 weeks, but really had to fight for it. I also take sublingual b12 lozenges, that have 3000mcg of b12, vitamin c and folic acid in them.

I feel I need my injection monthly, but GP won't give it that often, even when I explained I had pins & needles in my hands.

My searching led me to the Perrnicious Anaemia Society and then to b12d.org charity who gave me some good advice. This led me to seek further tests and find my vit d levels were low, which I am now taking supplements for.

I thought I wasn't getting enough b12, but there were other issues. I don't doubt you may need more b12, but look up the symptoms of other deficiencies too, just to be sure.

If you want to know where I get my b12 sublingual tablets, don't hesitate to send me a message, not sure if I can say on here where I get them?

Sorry if I've duplicated, what others have said, just easier to answer your post, without reading all the rest.

Best wishes M

[Jill60]

Hi all. Re the timeage of having B12 injections, I have them every 3 months, however, I also feel Thai I need the injections much sooner, say around 8 weeks, ...here comes the BUT......the main nurse of my practice said so e of her patients do have them sooner, some even every four weeks, but that was the elderly.......then another nurse said that they don't allow sooner, as there is proof that they don't help....and it's just a placebo affect for patients that are worried, then they offer it.....after reading the info, I am making an appointment to see my Fab Doc, and ask to have my jabs sooner....I have many health issues and below I will type my other conditions I suffer from, maybe then, my having Low serum Ferritin(iron stores become Non existent).....btw I'm hoping someone on here will Spot the other conditions I suffer with that might makes sense as to why Other conditions have happened to me, being related etc.??

Reiters Disease.....causes many other health problems

Fatigue syndrome prob due to R.A.

R.A....over all had 6 corrective operations. (Rhumatoid Arthritis) Pain In every joint!

Need Methtrexate (Immune Suppressant) this med use to treat Cancer, wonder if this causes other health problems ? ?

Muscle contractions ( recent problem) ? Help, info would be great

DDD....Disc Degeneration Disease....( two spine ops 2003 and 2nd op Jan 2013)

Gastritis ( inflamed Stomach lining )....due to severe pain my diet is limited, this has caused other health problems , which I will list below....

Anaemia, Low Iron Stores(Serum Ferritin) needing Iron Infusions

B12 Deficient...3 monthly injections (at moment)

Herniated Disc in Neck.....awaiting to see Nuero Surgeon to remove it, as causing dreadful pain down neck Into shoulder and down my arm...take Gabapentin Ugh!

Thyroid op....Sub total Thyroidectomy.....

I suffer with Chronic Pain in all Joints, head to feet, worse in flair up due to R.A. On many meds for pain and Methtrexate......

The other conditions make me tired, fatigued, unwell, angry, fed up etc, but I seriously don't know what condition is making me feel so Fatigued, guess it's being Aneamic?

My pain is awful along with Muscle spasms, feet hurt to walk, hips hurt when walk longer than say 20 steps, often hurt before I walk, and then the B12, I thought if I take the injections offered that I would be ok, but after reading some comments people have put up and taking charge of their own B 12 additional injections have scared me silly,. My GP is very thorough, spends ages with his patients, Im So lucky to have him, so because I have so much trust in him, I don't do as many as you do by checking every blood rest and check all results....once my GP has said tests are all normal, I accept that! or DID Accept it, but now u sure LOL.....anyway, reason for showing the above for all to see, and because there are many intelligent people on here, and if you have the time, can anyone perhaps pin point as to why I feel so exhausted......even to shower is dramatic and I have to Gear myself up to have one, such a palava and a great effort....just wondering if it's all to do with B12 and being Aneamic for a few years, and low Iron stores(serum F etc) ?

Thanks all xx

[Hidden in reply to Jill60]

Mine refused as well..Once every month is the limit.. I get tested

every single month to see if it goes up. That's the deal.. they checked

with my other doctors who agree that it should come up slowly.

I bought my own.. Yes, injections.. you can buy them on Amazon or

you can send for them from Canada.. the pharmacy called me back

to make sure that my order was correct.. No prescription was required.

I did one injection and my head feels clearer already. I am going to

inject once a week. These injections go into the muscle.. =)

They aren't inexpensive but they cost a lot less than my co pay

to visit the doctor and for the medicine itself.

I may or may not continue with giving my own. Sure, my energy

is there a little more but my body is achy today and it usually

doesn't hurt much anymore. (I have RA) I feel kind of headache

and flu like but I know it's not the flu...maybe it's a RA flare.. I hope

not. (I take Simponi shots monthly) I am really on a fence to quit

with everything and start over by getting my vitamin and mineral

levels up where they should be..if that doesn't solve it, then maybe

I will go back to using Simponi??

[Hidden in reply to Hidden]

Sounds like start up symptoms to me Yikes, it's normal to feel a bit worse when all those nerve endings are reawakening, your body is literally starving for B12. And B12 is a powerful detoxifier, so it can feel like detox symptoms. Here's a link about this, you should keep a symptom diary because you'll be surprised at what's actually improving:

b12d.org/b12-injections-wha...

You should consider loading injections, say 3 a week initially, to get maximum benefit. Everyone is different, some feel immediate benefit, some take longer. For me it was around my 5th loading injection that I came through the start-up symptoms. Once you've had max improvement of symptoms, that's when you can consider spacing them out more. Ideally you should have them just before your symptoms start to return. That's where the diary comes in.

You need to make sure your folate and iron are in good shape, top half of range folate, 80 or 90 ferritin. Supplement these if you're not there. More frequent injections will put greater demand on these things. Potassium very important, lots of potassium rich foods required. Banana is the obvious choice but google it, there are many others.

H x

[Hidden]

I have a really good relationship with my GP. I have one jab 4 weekly times 3 and then 1 jab 6 weekly times three on a cycle. I must admit I rarely make it to 6 weeks and that part of the cycle is more often at 5 weeks. Having had another fall this morning I'll be begging to go to 4 weekly as for those three months I have no problem.

I'm 51, work full time in Futher Education, have just started a family research business and about to start a Post Grad Cert in Genealogy. I believe that we should get enough B12 to live our lives and not stagnate and struggle.

One question I would like to ask - do any females feel that menstration has an impact on B12 levels getting low?

Best wishes x

[lorrie-62]

Thanks to everyone for their comments I recently spoke to another gp and we r going forevery two months on a six month trial , but I have realised I have an awful lot of other symptoms people have commented on and never thought they might be connected thanks again to everyone

[Hidden in reply to lorrie-62]

If you really feel like crap, there are sub lingual b12 or sub lingual spray.

Let the B12 dissolve very very slowly under the tongue. You can make

the melt last at least 30 mins without trying too hard. People have

told me on here to take the shot and to use B9 as well.. My doctor

prescribed 1000mg per day..I'm taking it with a tiny bit of OJ and Apple

Cider Vinegar..(just enough to get er' down) It's too soon to tell if

it made a difference but as of the last 24 hours, I am pretty much

symptom free..no tingling of the feet or pain.. my toes are still numb.

[Mizpah123]

It's a struggle to get doctors to listen, but first and foremost they should be treating symptoms,

[KatKat999]

I have the same thing after 8 weeks my symptoms all come back, tied,drained and sleepy. So my GP has agreed to me having my B12 injection every 8 weeks.. Go back to your GP and ask again.. Good luck