Being needle phobic I dread having my b12 injections every three months. I don’t feel any different having these and I asked my gp what would happen if I just stopped getting them and I was told my organs would slowly stop working and then fatal.
I wondered if this is true
Hi Londone16 after over 47 years I would say yes!
I was "given" two years to live in 1972 unless I either ate raw liver three times a day or had B12 injections for the rest of my life.
I am still "clivealive" at the age of 78.
I wish you well - and yes B12 injections are for life.
Take care now.
Wow thank you
without B12 you will eventually develop anaemia and your nervous system will shut down - you will be unable to balance and walk, probably go blind, become incontinent, lose your hearing, lose your memory and cognitive function.
The name pernicious anaemia is a historic misnomer as it was first identified long before anyone realised the cause was a vitamin deficiency, as a type of anaemia that was associated with development of madness and death. It wasn't a quick process but it was inevitable. The 'pernicious' in PA relates to the fact that it was then fatal. We now know that the underlying cause is an autoimmune disorder of the gut which attacks the mechanism that allows you to absorb B12 from your food. Injections are an effective way of replacing the absorption from food.
Theming is don’t remember why I was diagnosed with this. I think at the hospital with a check up for under active thyroid because I felt cold and tired not through a blood test.
Having thyroid problems may put you at a higher risk of developing a B12 deficiency
My memory was appalling and I used to hear voices. I really thought I had a mental illness. Mouth ulcers were a big problem. I developed an ectopic heartbeat and was told it was a virus / angina, very occassionally I get that now. I never felt as though I had slept and was in a downward spiral. Very few people understood except the specialist I saw. GPs sadly don't.
I think you may need more regular injections if the 3 monthly don’t help you. You could self-inject , as many of us do on this forum . There is a device available for “needle -phobics” to use. It is obtainable from Denmark and costs about £100.00 . Best wishes .
Londone16, the symptoms of hypothyroidism and B12 deficiency overlap considerably. B12 deficiency also develops very slowly so it may be that the symptoms you haven't recognised the symptoms because of the overlap with hypothyroidism.
My B12 absorption problems were also identified when I was in hospital - for a broken ankle - the labs there will tend to pick up something odd and are in a better position to trace it to what is causing the abnormalities - in my case it seems to have been astronomic levels of creatinine and then other tests showed I didn't have kidney problems so ...
I have a friend who had therapy because she has a bad phobia of needles so it may be worth asking your GP about whether there is anything similar that is available in your area.
Dealing with needle phobias can be very difficult. About 5 years ago the CDC in the US had a micro-site for B12 absorption problems which suggested the use of nasal sprays for patients who were needle phobic. High dose oral/nasal sprays can be effective for some people but it is very hit and miss as it isn't effective for significant numbers of people and before trying it there is no way of knowing if you are one of those people. High dose oral and nasal sprays aren't licensed medical treatments in the UK which doesn't mean that they aren't safe just that nobody has applied to have them licensed so the MRC hasn't looked into them.
So basically there are options for dealing with a needle phobia but the first step would be to discuss the phobia with your GP.
I suppose it all depends on how bad your B12 is at the moment, the condition is very 'sly' and as time goes on there are lots of little things that start really become really quite serious, and painful, as for the injection side of things thats a funny one because normally they don't hurt, but the last one I had was a right good old bee stinger,the injections definitely do help, and you will notice a difference, some surgeries do a 3 monthly cycle and others may do a 2 monthly,occasionally you may need folic acid, but I'm really not clued up why this is prescribed, I had this given to me when I had a weird type deep chest rumbling sensation and had another blood test to confirm any deficiency of any sorts,it's important to keep on top of the symptoms because I think once you get new symptoms its difficult to get rid of them,the list of symptoms that you can get is quite extensive,hopefully you'll benefit from the injections,and I see you have had a reply from 'clivealive' and he's the chap with a vast amount of knowledge,so I wish you well with replys, good luck.
Well I feel for you with your phobia. I think it would be a good idea to ask your GP for treatment for it. As injections are for life it would be worthwhile tackling it.
If you have felt no improvement on three monthly injections you may need a higher frequency. Am sorry to write...lol. The right level of injections can resolve many symptoms over time however it cant repair any permenant damage. Most of my symptoms have resolved except for a mild tremor. I have lost a lot of muscle so am trying to rebuild it. I do still suffer from fatigue and have to avoid alchohol as it sets me back.
Thank you wavy lines
Yes, they really do!
I had a period of eight months without injections due to my surgery’s inability to offer out of hours appointments - my eyesight and mental health took a nosedive and the former hasn’t recovered. I became so ill that I even forgot I had B12 deficiency!
Further, I have hyperthyroidism and like hypothyroidism, some of the symptoms are remarkably similar to B12 deficiency - tiredness, palpitations to name but two. The only way to differentiate between the two is to get one of the conditions under control (for me this was B12 - I inject monthly) and now I can talk with confidence about the Graves’ Disease to my endocrinologist. He knows I self-medicate B12. I’m hoping that my next treatment of radio-iodine next month (block and replace therapy failed) will sort out the hyperthyroidism.
But please don’t eschew your B12 injections as they are vital for your health.
I’m sorry to hear that but thank you for the info.
Lol Im sure you don't feel any different.
I needed to inject myself twice a week.Now I use cytoplan b12 sublingual-as it is a mix of methylcobalamin and adenoyslcobalamin. Easy to buy on line from Uk.
You also need to take folate as metafolin or active mthf they both work hand in hand with b12,.
I advise also to change your diet cut out foods high in lectins allow your gut to heel.
L-glutamine in powder for which you can get from most health food shops or body building shop its sold for muscle build but is renowned for healing the gut too.Ask what the l-glutamine is made from as it is fermented and kill lots of lectins but i prefer one without lectin form.
See how you go.I rarely inject now following this routine you will feel amazing
Thank you
Hi apparently what I've read about B12 Deficiency coincides with what my GP has said. That worse case scenario... if not treated early everything begins to shut down & can be fatal.
A friend of mine is now having her B12 Injections every 8 weeks as the usual 12 weeks was leaving her exhausted etc.
Please try & keep up with them as they are necessary. It's worth asking if there is any other way you can take B12?
Good luck & I hope all goes well.
It works!!! It gave me my life back! Not a miracle cure but with careful managing you can live a comfortable life, carry out a job/ career where people can rely on you again. I am on monthly but sometimes need them earlier then that, as required my neurologist said. I wish GP’s were as accommodating. So Self Help injections are necessary in my case. I can do it myself subcutaneously or I know where I can get them intramusculair privately.
A colleague of my daughters had a long time of problems with her husband, all sort of gradual declines and spurious aches and pains going over a number of years in his early fifties. Eventually he was hospitalised and continued to decline. By the time it was realised he had a B12 deficiency and was out of stock he had lost the function in too many organs for sustained living and died.
My sister-in-law declared some years ago so wasn't going to have the injections as she doesn't like them when she was diagnosed with PA. My wife, her youngest sister told he she wasn't going to her funeral as she didn't agree with suicide. She goes to the surgery after hours because she makes such a fuss it would frighten ant patients who heard her.
Do you honestly think any of us on this forum who have regular injections or do it ourselves actually LIKE having or doing them. Nobody likes injections and that means every one, ever the gung ho brigade who are up for anything, in there heart of hearts they are just as needle phobic as you and covering it up. Injection, in modern parlance suck. The dentist says "Sharp scratch coming" till I told him not to be silly they hurt, so now he just says "This is going to hurt" and it does.
Doing it yourself doesn't hurt, well not often. It comes as a big surprise when you slide that needle in gently and don't even feel it. If it does start hurting then you stop and try again when it won't. None of us like having to get the kit set up then finally sit with it pointing at our thigh muscle. It takes an effort of will to actually do it, but when you do you feel special, one of the small section of the community who does do this. You can feel superior. Even your GP is unlikely to have actually done it to themselves, chunks of pork, melons, apples and oranges but no themselves.
So take control of your own body and it's essential medication. No more feeling like s--t warned up and waiting for the practice nurse to do it at their convenience. You can do it at your convenience (not in it though) whenever you feel the need. Little kids do it, the diabetics do, and some of them do it several times a day.
Even Teresa May does it 5 times a day.
Take control of your borders and do it yourself.
Thank you
I read that in Sweden (and also in Canada) B12 deficiency is treated perfectly successfully with oral B12 tablets at a dose of 1000 or 2000 micrograms daily. They do this because it is both effective and cheaper than employing a nurse to give injections. Injections lf 12 has effectively stopped in Sweden, I read. Would this be a solution for you?
Would you know by any chance the full ingredients of these tablets, as many have ascorbic acid as added ingredient, a migraine trigger in my case.
Hi,
I have used many types of B12 supplement eg oral tablets/sublinguals/patches and have found that injections are the most effective in keeping symptoms at bay.
When I have talked to others with b12 deficiency, the majority say injections are the most effective.
My understanding is that only a tiny percentage of the B12 in oral/sub lingual B12 tablets goes into the blood but with an injection, the majority of B12 goes into the blood.
Posts from Martyn Hooper's PA blog about oral treatment for B12 deficiency
martynhooper.com/2016/08/02...
martynhooper.com/2017/03/22...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
B12 Deficiency Info website
I am not medically trained.
Thank you Rosegrower - that’s interesting x
You are right about self medicating Londone16 it takes a bit of talking to yourself but when you do it for the first time and you realise that it is less painful than when at the surgery it puts it into perspective. After a few times I no longer care! It is MY health that I am looking after when, after all, noone else gives a damn.
Do you inject or is it your wife who has PA? I'm not sure, I ask because my husband doesn't get any of this (I think I overshadow his cholesterol med which is so essential that he refuses to have coconut juices in his smoothie).
It is quite frustrating when not being understood, especially when I really don't feel like a night out but expected to be a taxi, this is a lonely disease.
Hi there is no way I could inject myself
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