Hi all, new here but finding the forum a very helpful resource. I am a male in the UK and 61 years old.
To try and cut a long story short, I was diagnosed with CFS/ME around 20 years ago and have been battling against terrible fatigue and other symptoms ever since. I have always thought that I was just pigeon holed with with this condition as my GPs over the years could never find anything else wrong with me despite countless blood tests, consultations and scans etc, etc.
Earlier this year, the fatigue became unbearable, I literally struggled to get out of bed. So yet more self-research around my worsening symptoms including: Fatigue, brain fog, ice cold feet and hands, walking like I was drunk, terrible balance, low in mood (Previously treated with a variety of anti-depressants, which did nothing) breathlessness, dizziness, tinnitus and vertigo. And guess what popped up? … A possible B12 deficiency?
Sadly this came to light at the beginning of the first lockdown and getting a GP appointment, let alone getting blood tests done proved impossible. A GP telephone appointment proved next to useless with a dismissal of B12 related symptoms. However, an appointment was made with a hospital neurologist - Since cancelled because of lockdown plus a brain scan, which did go ahead and thankfully came back normal.
My list of symptoms fall well into the typical B12 deficiency category but I had no way of finding out my current levels other than looking back at my bloods history and taking a guess. I found only one relevant test result going back to Aug 2017 (3 years ago) which showed the following results Serum B12 237 ng/L (Normal no action) Serum Folate 16.6 ug/L (Normal no action) Serum ferritin 373 ug/L. (Normal no action) I was however diagnosed with Celiac disease and Vitamin D deficiency some years ago and have been taking supplements for this and calcium for osteoporosis ever since. More recent tests have apparently ruled out Thyroid problems.
B12 was not considered low enough for any action back then, but add 3 years, plus the fact that I am celiac, and rightly or wrongly, I came to the decision that I might be B12 deficient and that at least I could experiment myself to see if B12 supplements made any difference to the way I felt.
I first started with some under the tongue drops for a while but didn’t notice any real improvements so, with the help of this forum, decided to self inject. I have been doing IM in my thighs every other day and have to date used 16 ampules 1mg / 1ml Rotexmedica Hydroxocabalamin from Bodfeld Apotheke in Germany and other supplies from Medisave in the UK. Excellent service from both. I have also added 400ug of Folic Acid daily as a supplement.
Note to others at this point: Once over the initial mind games and fear of sticking something into myself and staring at the syringe and needle for what seemed an age before I took the plunge, I was pleasantly surprised at just how little it hurt, if at all. I now do this as a matter of course and even after hitting a vein once (Quite scary but harmless as it tuned out) have become accustomed to the ritual quite well.
Anyway, so far peaks and troughs, but I do notice a small but not dismissible improvement in energy, I used to stand at the bottom of a flight of stairs and think “Oh no, can I summon up the energy to climb them?” Now I realise I am at the top without thinking. I used to struggle with sentences, stopping half way through because I forgot what I was talking about, now this does not happen as much. I’m sure my walking has become a little more steady. On occasion I do feel a Buzz the following day after a B12 shot but when it happens its short lived. So things are happening but I still get most of the symptoms to maybe a lesser degree but it has to be said that there are changes. Even my wife said “Wow you have warm feet” on one evening. I now have a sort of ‘looking outward’ rather than ‘looking inward’ feeling if that makes sense.
I realise that a road to recovery could be weeks, months or even years ahead, but as my current path seems to be yielding some results, albeit small ones, I’m wondering what to do for the best.
So my questions are, did I do the right thing in self diagnosing my condition without clinical back-up? And should I continue to go it alone and SI every other day regardless and see if there are any further improvements in my health? Or, should I stop completely and go back to GP for further detailed blood tests and start with a clean slate with an as yet unknown way forward or outcome? The latter no doubt with skewed results because of my own actions.
Right now I feel like I’ve made it someway up the creek, but have now lost my paddle so any advice will be welcomed and appreciated.
It sounds as though you have been deficient for a long time , so your recovery will be slow. You have done nothing wrong at all by self-injecting B12 . You cannot overdose on it , so that is a real advantage . But now that you have self-injected , it will be difficult to get a diagnosis . Also your G.P. May not be pleased to hear that you are self-injecting . I have diagnosed P.A. and told my GP that my 3monthly injection was not sufficient ,and as he would not consider more regular injections, I was self-injecting . Since then I am unable to get my NHS injection . Luckily, as you know ,self-injectIng is relatively cheap .
You are doing just the right thing . I hope you continue to improve . .
When you stop improving , you could adjust the injecting . Best wishes .
if you find that symptoms return within 24 hours then that could be an indication that every-other day isn't sufficient for you - for some it isn't.
Having gone down the self injection route means its unlikely you will be able to get a formal diagnosis of PA/an absorption problem. Serum B12 is a particularly difficult test to interpret, though it can be useful in identifying a downward trend or significant drop (>20%) in serum B12 levels which would indicate an absorption problem.
Outside the scope of this forum but it is possible that your problem isn't actually B12 absorption but how your cells handle B12 - there are a number of genes that are known to affect how efficiently your cells process B12 so it could just be that you need much higher levels of B12 because of some genetic variant - however, the variants that have significant impacts ie enough to explain your symptoms - are quite rare.
Just kept going until no further improvement and then try 2 a week then one a week maybe.
I've not had any diagnosis of PA or any other reason.
You've got a reason ad you have celiac disease
I'm 2 years in and i stated with a collapse and vertigo. Your symptoms sound very familiar. I know they overlap with other conditions.
I'm presently injecting every 6th day. I'd got to every 2 weeks from every other day but was 'treading water'im still hoping for more improvements. It is a rollercoaster. Try a list of symptoms then review in say a month.
I sometimes wonder what I'm doing but am very very slowly improving. Quite shocking if I look back a year or more. I havent had a symptom free day but I get headache free days even if I have head pain.
So i would carry on. Take vitamin d and when you do get bloods done get your iron ferritin and folate checked. Hope you slowly and steadily improve
Hi! I pretty much have exactly same story as you! I’m in UK and in my 30s. I started self injecting in May. So many of my symptoms including the depression disappeared after a few injections. I am slowing recovering from the last bits of fatigue and starting to feel like I could run again. My sleep didn’t improve so I am using sleeping tablets.
I had a phone call with my GP practise - I had written a four page letter to tell them about my injections all my symptoms. I said I wanted to discuss looking at why this happened and long term management. The response was they couldn’t care less. They refused to make any referrals for me, and just said do what I’m doing and all they could offer was one blood test a year. I think that’s a bit poor, especially hearing about other GPs from friends and on here. So I’m planning to swap to another GP practise when I can, which I can’t at moment due to Covid. Good luck and so glad you have found the treatment, as I also lost 6 years of my life with awful symptoms and just being told I had CFS and needed to live with it.
Thanks for the replies and I wish you all well and an ongoing recovery.
wedgewood. Thank you and appreciate what you say. Yes I think the cost of self injecting played a great part in my decision to go it alone. I think I will keep my SI secret from my GP for now. Maybe one day, if my recovery goes well, I will thank him for nothing in no uncertain terms!
Gambit62. Right now I think every 48 hours is working for me although sometimes I get very tired again the following day but feel an immediate small burst of energy within an hour of injecting. I do have a very rare genetic disorder but so far, none of the research on it in any way links to B12.
Nackapan. From the sound of it, you went it alone also. Yes I expect a bit of a roller coaster ride but at least I am in control of it to some extent. Hopefully in 6 months time I can pat myself on the back for taking the initiative but even if nothing significant happens, I cant feel much worse than I have done in the last 6 months. I am keeping a dairy of symptoms as its very easy to lose track of progress when changes are so small but nevertheless noticeable.
Jengastar. Its very early days for me, just 17 x 1mg / 1ml ampoules in so far on every other day but I think that suits for now. CFS/ME is a very broad diagnosis and like you I was never really satisfied with it. Im really pleased that you sidestepped the sometimes bureaucratic unsympathetic ignorance of many GPs, and looked after number one!.
Has anyone else just bit the bullet and started regularly self-injecting without medical intervention based purely on symptoms alone?
Yes I started to SI in February because I felt as though I was dying with less and less of me working properly. That followed 4 years of injections every two months that after two years I increased to every month. It became clearer and clearer as neurological symptoms increased that this was not enough. In the past I raised the issue with GPs and they did not want to hear me talking about the severe central neurological pain - refused to accept the advice given in the BNF that this required every other day loading doses that should be continued till no further improvement. Hence my decision, helped by human biology qualifications and research experience to take my health into my own hands.
I wrote to GP and told him what I was doing in July - a phone consultation followed when he tried to persuade me to stop SI - I stuck to quoting the BNF and I will not stop until I believe I will see no further improvement. They have not contacted me again. I now believe that the many periods of severe depression, that did not respond to many different medications were caused by B12 deficiency. These have contributed hugely to preventing my career and life experiences reaching the levels they should have and limited my achievements severely - I hugely regret this yet I am relieved that I believe I have found the reason so can stop beating myself up about these failures.
I believe that B12 is involved in many processes that have been categorised as separate conditions and offer a fertile area of future scientific research. As all my ageing signs have reduced considerably I suspect that these are a result of B12 deficiency - including brain degeneration. The work of the PAS in observing and categorising the symptoms is very important and will eventually help human kind to live longer, more fulfilling lives. I wish you well.
After years of deterioration and fearing spinal damage and dementia, I chose to self treat as a last resort after all possibility of NHS B12 treatment at the time ended. I fought really hard to get treatment.
I wish I had started sooner.
There are quite a few forum members including myself who have had a diagnosis of ME/CFS/Fibro at some point.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
Hi beginner1, Someone told me that the Gloucestershire guideline has changed but a lot of surgeries don’t know about it. I am only new to B12 but I was given the following web page address to check.
“Primary Care Management - Treatment Algorithm” (page 3-4)
Thanks for the replies, appreciated!
Bellabab. I can really relate to what you are saying. I feel I have wasted many years and missed a lot of life's experiences through fatigue and low mood. I'm pleased you stuck to your guns and hope you continue to see positive results. Life's too short!
Beginner1 Dairy = Ooops! I blame it on the lack of B12 At 61 I feel more like 91 at times, I think this might be my last chance to change things so Im hopeful of a positive outcome. The signs are promising though and Ive just got so fed up with being fobbed off by the medical profession.
Ghound. You were one of the lucky ones it seems, most threads Ive read on this forum regarding GP help has mostly been very negative. Wishing you well.
HeartyGilly. Yes thank you. Early days but I can feel changes albeit small ones. I bought 100 ampules, so hopefully by the end of the course I will be able to report a general improvement.
Sleepybunny. Yes like you I wish I pursued this earlier. I was not aware of the importance of a healthy B12 level many years ago. I had to take a decision forced on me by the lockdown to SI but doubt whether I would have had much support from my GP anyway. I have since read many CFS/ME papers that advocate the use of B12 in the treatment of fatigue, so with no real medical risk or silly financial outlay it seems to be the most obvious way forward. Thanks for the links.
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At 61 I feel more like 91 at times, I think this might be my last chance to change things so Im hopeful of a positive outcome. The signs are promising though and Ive just got so fed up with being fobbed off by the medical profession.
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