I was diagnosed with pernicious anaemia a few years ago and have b12 injections every 12 weeks. I am 30 years old and am currently in my 1st year of an adult nursing degree. I'm struggling or should say struggle continuesly with chronic tiredness, however my doctor doesn't seem to listen to me! This is very frustrating. I'm really feeling down at the moment due to the tiredness as I'm struggling to get through my day. Also as you can't see tiredness I feel people think I'm making it up, which is upsetting to say the least. The GP keeps saying my bloods are 'normal' however it isn't normal for me to keep feeling like this. Any advice would be much appreciated, many thanks in advance.
Hi
I was suffering on the 12 weekly B12 injection also, many people do and are left suffering with symptoms fatigue, anxiety, tingling thats just a few. Make sure your doctor has tested your ferritin, and vit D also.
There are FB groups for vitamin B12 deficiency / Pernicious anaemia that are very helpful. Many of us have to take sublingual B12 between injections to keep us going.
Hi, thanks for your reply will look into this as it is becoming a major problem.
I was the same as you, every twelve weeks was just not enough. It felt as though my batteries were just running down until the next injection. My GP agreed to a trial of more frequent injections, and it worked so well for me, that she has agreed to keep me on an injection every six weeks. You say your GP is referring to blood test results saying they are normal, but once we are on injections the blood testing is considered to be unnecessary. Have you thought of using sub lingual supplements to keep you topped up, if your GP isn't open to discussing this with you? The other possibility is your ferritin and folate and VitD could be low. We need to check our other vitamin levels as they are often low too. Do you take a good quality B complex supplement, to keep all the B vitamins in balance?
Best wishes
Marion
If you have Pernicious Anaemia with neurological symptoms you should be receiving injections every eight weeks - not twelve - in accordance with both the British National Formulary and the NICE guidelines.
In addition ask your doctor to check your Folate level as this is essential to process the B12.
Hi, I want to share my story, so that you may get some ideas to guide you. Back in 2002 I was in my first year of a nursing degree at the age of 32, but I was undiagnosed B12 deficient, so you have a bit more knowledge than I did. Well anyway I get how difficult it is to study, live, and to go on placement, and the irony of working in a caring atmosphere, yet no one seems to care! In my case two people I worked with had B12 deficiencies/P.A and it didn't even occur to them that might be why I was struggling let alone ask if I was okay. Subsequently I was so poorly I had to stop studying after repeating my first year, and that was in 2014 and I'm still not well enough to return, because I have been unfortunate enough to develop associated conditions relating to B12 deficiency/P.A , so in retrospect I should of kept on at my G.P to help, after my first year (the first time) I should of taken a break for a year, rather than flogging myself, and further ruining my health. Also after say for a example of visiting your G.P three times and if they become helpful then great! But after that if they are not helpfull try the sublingual lozenges, but ideally they need to be the Methyl-B12 and the highest dosage you can get because you will only absorb about 1% of the B12 and also take the RDA of a good quality Folic acid (as others have said). Ultimately supplementing may suit your lifestyle more than visiting your G.P regularly, trying to book in blood tests, then fighting to get injections, when you need or want them! Plus I know at uni they are very good about telling you about what the NMC requires from you fitness wise to practice, and safety for patients, unfortunately no one will look after you except yourself!
Good luck & All the best!
Kelly
That's another "sad story" Kelly
I was diagnosed with P.A. in 1972 and for the first 39 years I was totally ignorant of what it was about as I knew no-one else with it and neither the succession of doctors I saw (for other reasons) or nurses (who gave me the four weekly cyanocobamalin injections) ever asked me how I was coping.
Down through those years I had noticed a return of neurological symptoms in the week running up to my next scheduled injection and so I used to "slip in" an occasional three week one until in 2010 the then nurse "caught me out", refused to give me the injection and reported me to my doctor who called me in and I was "forbidden" from having any injections at any time that were not 4 weeks apart. He said the pains were all in my head and couldn't be due to the P.A. because I was having the B12 injections.
I then joined the Pernicious Anaemia Society and asked the question "am I the only one in the world who feels the need of more frequent injections?" and was amazed to find that there are hundreds of "us" out there and so the battle began.
Long story short, two years ago when I was diagnosed with Type 2 diabetes, I changed from my adamant "one size fits all" doctor to another one in the practice who eventually agreed last July to increase the frequency of my injections to every three weeks.
Have you ever been tested for Intrinsic Factor Antibodies or Gastric Parietal cell Antibodies? Is there a family history of P.A?
It is good that you are aware of the importance of folic acid as this is essential to process the B12 you are supplementing.
I suggest you make a list of your symptoms, present it to your doctor and ask to be given B12 injections in accordance with the B.N.F. and N.I.C.E guidelines on treatment of Cobamalin Deficiency for patients with neurological symptoms.
If possible take someone with you who can verify your symptoms as they are less likely to be dismissed in front of a witness.
I wish you well.
Hi Clive, we have had a long chat about this before! It goes to show our storys and Nikitas story is not a one off! And I really feel for her, because when I was on placement I remember being so tired on the train on the way back from placement and being so tierd and falling asleep where I sat, then sort of coming too and being totally disorientated to where I was so much so I actually got off the train at the wrong stop a few times, plus I was so tired and depressed I must of seemed that I was mad! as I said before the irony is one of my supervising nurses had a B12 deficiency/P.A and I was criticised/disciplined for not requesting to go to the doctors properly, and then not coming to placement afterwards even though I would of spent about a hour there! Then I told them the next day what had happened and the G.Ps were quite concerned, plus I showed them my puncture mark where I had the blood test, now you would of thought that would of been the que for a bit of tea and sympathy! ... wrong! ... more criticism and disciplinarys! I just now think that a lot of health care professionals now spend a lot of time caring for their patients and themselves, they don't and can't give anymore care and support to anyone else.
HI nikita51304, I feel so bad for all the trouble you have had with treatment for PA, the treatment with sublinguals is not something that's used in the US, because PA is a digestion situation, anything you take through the mouth does no good ,must be intermucual, although I have had PA for 20 plus I can only speak to my treatment, I give myself injections every 5 to 7 days , because as you get older you absorb less. I have been where you are with injections once a month or so , but they just didn't work any longer, so I found out injections closer work. My Drs. All agree that it's just something I'll need to do. Here in US PA is rare, but since all my family is Western and Northern European , I have inherited the DNA to have PA. My Drs. is British. He has helped me unstand how much human DNA and how much that effects our health. I wish you the best , Suzanne
Hi Clive , I have just read your post and am shocked, you are describing treatments run by unfeeling medical persons , people who report you for wanting an additional injection. Is this common? I'm so glad you were able to get a dr. That has a more logical approach to treating all medical situations.
Hi again, I want to correct I something I said earlier. I actually started my nursing degree in September 2012, and finally gave up on the whole degree in the late spring of 2014. So I guess I'm still quite up to date about what the universitys exspect from nursing students and how they view health issues. Unfortunately sometimes you can be in a catch 22 because if you say something it's not always looked on sympathetically! But you are suffering, so you maybe able to negotiate a shorter placement, whilst you sort yourself out, and then make up the missing practice hours in the summer. And as a lot of people have said supplementing is a option!
Sorry if I have sounded so negative, but I'm sure I just was very unfortunate, and I probably made things a lot harder for myself, because I didn't really say how bad things were, until I reached crisis point, by which point there wasn't much change of undoing the damage to my course/career and to get my health back on track.
If you have read my post to Clive (he's a lovely gent, who's full of info) you will see that I get the whole 'making it up' bit and I believe you that you are not making it up! As other people of said have your ferritin and folate levels looked at as well as your B12 levels, you don't know what they migh reveal!
Good luck & all the best!
Kelly
Hi Kelly , I'm Suzanne from the US. I have had PA for over 20 yrs. If ever I could be of any advice or just an ear to listen. I hope you are feeling better and recovering your life. All the best Suzanne
Hi, Suzanne
I totally get what you are saying, yes injections are the best method! But as Clive says injections are not always exactly forthcoming here in the UK. I did have a crazy idea of when I was on holiday in Europe and buying the vials and needles from a pharmacy, because it is totally legal and normal to do this in Europe, and I have been trained to do I.M injections, plus I'm a bit of a tough Cookie. I did do it in the end, and I did give myself 1 injection, all I can say is NEVER EVER AGAIN! So that left the options of rejoin the cycle of pleading with the GP to be allowed to have more regular injections or to supplement.
I read somewhere that with sublingual lozenges you take in about 1% of the B12, but the effects are far less than that because of how the B12 is processed and absorbed by the bodies tissues. The lozenges I buy are imported from the USA, I have to say for me they work, as my blood test results can testify to that, but it may not work for everyone, plus you need a good folic acid. I might be wrong but in the USA are a lot of foods fortified with folic acid? As far as I know in the UK for some reason we don't seem to fortify many foods.
:-) Kelly
Hi Kelly , lm so glad you found something that works for you, or at least seems to work . I've never heard about folic acid being added to US food. So many of us are very concerned about anything added to food. Sublingual lozenges have never been offered or mentioned. PA is such a fickle disease some have symptoms others don't . I was almost blind in my left eye when I was diagnosed . PA caused my brain to think I had a tumor is I was left with Puesdo Tumor Cribri . ( pressure builds up ) I don't want a shunt so I walk to use up excess spinal fluid. Keeps me busy !! Have a great day Suzanne
I can answer the same questions about B12 treatment from 10 different people every day on another forum - that's how widespread the lack of knowledge is over here. I lived for nearly forty years in ignorance and believe me ignorance is not bliss when it comes to B12 deficiency.
I wish you well.
Hi thanks for reply, I'm not taking anything at the moment, is there something you could suggests? X
Where can I purchase these sublingual lozenges? Sorry to sound silly but I've never herd of them and I'm at my wits end so will try anything xx
Hi Clive thanks for your reply. My nurse keeps telling me that it doesn't matter how often you have the injections! Very annoying. Is there any advice you can suggest so I can take it to her and argue my case? I feel as though she hasn't got a clue if I'm honest.
Nikita
You can buy a spray from most health food shops or sublingual lozenges from an online search. I always used the spray as a top up, and it helped me. It was called Boost and came in yellow packaging.
Hi, the forum probably won't allow me to put exact details of the supplements I take, but here's the as many details I can give. The B12 I take is Methyl-B12 (methylcobalamin) 5000mcg and they are cherry flavour, and you just let them desolve under your tounge (sublingual). The theory is that some of the B12 is absorbed into the blood stream skipping out the digestive system, plus with it being the Methyl-B12 its absorbed better by the body. The Folic acid I take is Methyl-folate (again it's meant to be better absorbed) 400mcg, which I believe is the normal RDA, but it is quite important you don't exceed the RDA greatly (the BNF gives quite a list of side effects and cautions). I get my supplements from one of the well known buying sites. I would have regular blood tests then you know if it's working for you, plus blood tests will rule out any other issues.
I would also encourage you to talk to your tutor about this because issues with placements are the hardest thing to resolve and put right!
I have also read your last message to Clive, sadly it does sound like the nurse doesn't have a clue! As Clive will probably recommend the PA Society is a good source of information, which you can present health care professionals with!
Good luck!
Kelly