Having recently been diagnosed with PA, I have had my first 6boosters recently and need to have a jab monthly. What concerns me most is that I still feel totally fatigued. Is this normal? It's almost a month now since my 6 boosters and can't wait to get my monthly 'fix' next week as I feel like I have done an royal marine assault course.
Whilst the medical world had played this condition down as being very common, I was not prepared just what a dramatic effect this ailment would cause as I am now deeply concerned for my job because of the symptoms.
Hi Ian p/a is a condition where the body does not have the ability to make enough normal red blood cell caused by the deficiency of b12 <cobalamin and intrinsic factor > normal red blood cells produce the oxygen that the body needs to function hence the fatigue .. it took me three years suffering from i was diagnosed with C.O.P.D because of my shortness of breath .. i went to Greece to visit a friend and collapsed and rushed to hospital to have 5 units of blood and intrinsic factor and cobalamin .. before halejuha i was told i had very serious p/a .. on coming home i changed medical practice .. but as you say the medical world dont seem interested as i was told in Greece the british dont have the knowledge ... in Greece you can get a b12 injection when you want or else 2mls every six weeks in uk the normal is 1 injections of iml every three months .. if you are getting a jab once a month then you are one of the lucky ones .. i get i jab every 8 weeks .. i get a supply of cobalamin from Greece and inject myself .. i am 70yrs old and since i started managing myself then i feel a lot better but also have bad days too much b12 cant harm you .. i know a lot of people who are b12 deficient and not one of their management plans are consistent .. i am going to retire to Greece this year where there management of b12 deficiency and p/a are second to none ..so i wish you luck my friend and hopefully you can recover enough that it doesnt affect your work ... take care chris
Hi I don't have any advice I was diagnosed with PA back in early June had my 6 shots and the gp has let me start on every other day due to neuro problems. And yet a 5-10 minute walk is like doing an assault course. I've been recommended the book P.A the forgotten disease. Like you other than getting the info of loading and was told ill be on this for life. I wasn't told anything else the side effects how I can help improve it with diet or anything else. I just feel like they gave me the injections (I self inject) and left to it it wasn't till I spoke to theirs I needed to take iron as I'd been told by Dr will waiting for IF results. Anyway I'll be following ur post in hope ill get some answers too
I hope you start feeling the benefits soon till the know ur limits we are not supermen and wonder women cos we will pay for it afterwards 😉
Hello Ian
There are people who do not get a full benefit from the NHS B12 injections. This is because they are inferior to for example the US injections. The latter can be bought and self injected. Seriously suggest you speak to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/
joansie
Hi, I've had PA for 7 years & I'm 21. First of all I totally understand how you feel as I suffered from an experience near enough the same where I was hospitalised. At first my injection we're once every 3 months after the first 6 jabs but now after 5 years I self inject every 4-6 weeks. Do ask your doctor if that's possible because I know many that do so. It can be so hard managing it with the fatigue & even pins and needles. You need to find what works for you, keep pushing to get it done sooner, you know how your body works. Good luck x
Thanks for your reply Chris. Firstly, what on earth is COPD? I am new to all this so please forgive my ignorance!
From the limited literature I have read on this subject it certainly seems that people struggle battling with their GPs re dosage. I have been pleasantly surprised how robust my GP has been to get me sorted. I was also surprised that he has placed me on monthly injections. Trouble is, I am only 3 weeks since my boosters and already feel the original symptoms are beginning to return (fatigue, breathlessness, strange metallic taste, stomach pains) so it seems I really do need my monthly shot early! This bloody disease has knocked me for 6! I am a fit 52 year old and up until a couple of months ago, I still played rugby.... It seems I will now have to hang up my boots as I can barely walk 400 metres without breaking into a sweat and panting like I've just run a marathon! It seems my whole lifestyle is looking set to dramatically change and more worryingly, my job prospects to.... Very worrying times!
Looks like I may follow you out to Greece Chris!!
Hi I am like you and am desperate to have more b12 I have 3 monthly injections but it is a nightmare if feel so tired that the only way I can explain it is that my life batteries are running out ,I too fear for my job and feel this half life is not worth living at times can you tell me where I can get it in Greece I am prepared to visit I order to set up a regular supply thanks that how desperate I am
Blimey June, your expression "life batteries running out"... Thats it!!! You've hit the nail right on the head June!! That's exactly how I feel particularly the last few days.
I am already on maximum dosage so I doubt I will get any more B12!
Hi Ian firstly c.o.p.d is Conic Obstructive Pulminary Order unable to breath ordinary. usually down to smoking or other lifestyle . which because i couldnt breath properly when i went for my b12 injection .. some clever spark got me to blow in a tube and told me i had this condition c.o.p d and was treated for that for roughly three years , i went through three years of hell from someone who had good health all my life to this ... my breathing got worse and worse i had terrible fatigue dizzy turns and blackout , dry , burning tongue , tinnitis sore joints , severe pins and needles and lost my libido plus severe reflux ,, everthing was put down to c.o.p.d ....my wife had c.o.p.d which developed into emphyzema then lung cancer and death in her illness all she had was terrible breathing i knew she never got the things i had wrong with me as i was her carer 24/7 for 6 yrs ...that was seven years ago .. i have a new friend now who by chance has b12 deficiency and p/a and lives in Greece ... she told me the first time we met i didnt have c.o.p.d i had what she had p/a .. i was pretty ill last year and decided a spell in greece would be good for me .i was there roughly a week and collapsed as i could hardly breath and rushed to hospital i was in a induced comma for two days .. my haemoglobin level s were at 4.7 usually fatal to a feeble person i was given 5 pints of blood and intrinsic and cobalamin {b12} my friend was told i was lucky to be alive .. on my swift recovery i was told i did not have c.o.pd but p/a and had been diagnosed wrongly for three years ..it was fully explained to me fully in greece what lay ahead ... because of the drugs i had been given for c.o.pd for so long they had taken there toll .. since coming back from Greece i changed my practice for obvious reasons and my new practice tell me now some of my files are missing as i have taken a claim out against old practice ..so Ian my friend and i have read up a helluva lot of stuff on p/a a lot of people talk about this buzz they get with there injections it doesnt happen that way only people with normal b12 would feel a buzz as they dont need it .. cobalamin defficiency stops the red blood cells from making enough oxygen for the bodys need hence all the problems you have ... cobalamin can only be absorbed directly into the stomache ..a lot of doctors in this country just shrug p/a off as they dont understand it , the doctor i am attending has not got a clue i have to fill him in ..in Greece they dont have our perscription system you can go into pharmacy and order any drug over the counter and the drugs are cheap .. then go to a clinic and get nurse to give you injection usually about 6 euro,s you cant overdose on cobalamin ,, but if you dont have good doctor you can slip down to the danger zone as i did .. i am dong not too bad now for a man of seventy .. ive two yorkies who get me out the house all day and my breathing is ok ..so i think the better the doctor you have then the better your condition will be managed .. if your doctor is not taking at least one blood sample a month then change him/her as its crucial they keep an eye on blood levels hope this explains a bit to you take care chris ps the best site i found for information on p/a was the N.H.S and just keep following the links or the Mayo Clinic
Hi Ian, It sounds like you may not be very good at metabolizing the cyanocobalamin in the B12 shots, so you are not getting maximum benefit. 30% of individuals can't convert CN-Cbl to the active forms of B12, adenosyl and methylcoblamin. This is due to a genetic mutation that they have. The second problem that you have is due to the way the B12 is injected. You flood the body with high dose B12, which is way too high for the body to take up all at once and so basiclaly you urinate 90% out the first day, and so you rapidly drop off your levels. It is like an old battery. You can get a bit of charge in it, but it quickly runs out and you are flat again. i used to have this problem too. Could run around madly just after the injection, but quickly the energy seems to run out and then you are like a car on one cylinder. That was before I found these b12oils. They are magic!!. They have a prep with both active forms of B12 in them, adenosyl and methyl, so you don't have to worry about your genetics. The next thing is that you rub a bit on your skin every day, and so keep your battery fully charged. Finally, because the B12 is around all the time, you can gradually replace your stocks in the liver and most importantly in the brain. It has changed my life forever. No more ups and downs and I feel fully charged and actually doing better than most people my age. What a buzz!!
Well done Madge C for such a load of big fancy words .. you seem to have cured all p/a sufferers just like that with this so called oil ..lets just call b12 cobalamin without the fancy names for the moment ... this fancy oil how does it reach the stomach where it has to mix with intrinsic factor to make proper red blood cells .. maybe this oil is called heiniken it reaches the parts other lagers dont ... dont you think the medical profession would perscribe this wonder drug instead of us queuing up for injections ... loved the urinating bit and the buzz factor ... dont raise peoples hope Madge if you are floating around having these buzzes then you certainly dont have pernicous anemia
Hi Chris, you sound very skeptical, which is fine. A couple of less fancy things that you might be interested in. If you have PA, you have it for the rest of your life, so it is worthwhile trying to understand a little bit more about vitamin B12 and how it is processed within the cell and what it is used for. First, whilst B12 (of whatever type) is normally taken up from the intestine after it is bound to IF (as you rightly point out), it is then bound to a receptor on the gut wall. It then is processed within the cell, removed from IF and is bound to TCII. The TCII is produced in the gut epithelial cells and in other parts of the body. What you need to realize is that it is only when B12 (of whatever type) is bound to TCII that it is taken up by any or all of the cells in the body. Thus, technically you don't need to have it bound to IF, but to TCII. If you put the B12 into the oils and rub them onto the skin the B12 can bind to any TCII that does not have B12 on it. Now this TCII (free) is called apotranscobalamin, when B12 is bound to it is called holotranscobalamin. If you are not getting B12 from the intestine because you have PA, then there is a lot of free (apotranscobalamin) transcobalamin circulating and is available for binding to B12. This is why injected forms of B12 work, thus injected B12 does not bind to IF either. So if you can get your B12 onto the free B12 binding protein (apotranscobalamin) and make holotranscobalamin and make sure that there is always B12 bound to transcobalamin it will in fact stop you having the symptoms of B12 deficiency associated with PA, and then indeed you will be able to have a normal energetic life. Entirely your choice however. You can find out more about holotranscobalamin on PubMed. Last time I looked there were about 150 references, but that was about a year ago, so I am sure that there are more now. Cheers.
Hi Jane. I am really surprised that you have this disease and being so young!! I am curious as to what your symptoms were when you eventually diagnosed with PA.
I just can't get my head around this ailment as I had up till now, led a healthy,full and active life (i still play rugby!) up till a few weeks ago I had never even heard of it. Puttin in Perspective, it isn't fatal but my oh my, nothing prepared me for a rapid downward spiral with regards my health. I can barely walk 400yards without feeling like I've jus run a marathon! I was expecting to almost pick up from where I left off pre-diagnosis but that just seems a distant objective now. I have to be fit for the role I do in my job and now feel I will now need to start preparing for some bad news on the Two of the three loves in my life - rugby and my job. 
Thanks very much for your response Madge...Sounds interesting but I must confess, I did struggle to get my head around your email... I would give anything a go if there was a chance of restoring my health to my pre-diagnosis days - don't knock it till you try it as they sometimes say!
Thanks everyone for your responses.
I am fortunate enough to have a very proactive GP. During one of my visits to him recently I was somewhat surprised with what he told me; he said during the Victorian times the asylums were full of people who had lost their minds. He went on to say there are some in the medical world who now think alot of these poor souls may have indeed been suffering from PA. He further stated that King George may have also been a sufferer (as in the film 'The madness of King George'
.
Now back to the here and now; I am curious to learn from you all what you all think brought on your illness/condition/disease. Personally, based on an awful 6 months leading up to my diagnosis, I am convinced mine was as a direct result of stress.
(Apologies for the silly icon after my sentence relation To 'The Madness of King George'.... It was a typo - Big hands struggle on my small keypad on my phone!
Hi Ian, I was quite shocked too, I actually couldn't believe it when I was eventually diagnosed. Before I was I led a youthful life I was preparing for my GCSE's being the normal typical teenager & then suddenly something just went wrong, I literally couldn't get out of bed I couldn't make it to school, I was losing my memory as well as feeling in my feet and hands due to pins and needles, my hair started going grey & that's when I knew something was wrong. It took at least 6 months for the doctors I diagnose me which seemed like years and by that time I had permanent neurological damage in my nerves which was a bit of a bummer. I got signed off school as I was unfit to attend & now I'm here 7 years later trying to live a normal life which can be hard at times. The only upside is I self inject so I can do it whenever I please, but I've only been doing it for the past 2 years. Waiting 3 months for every shot was a nightmare like I couldn't wait for my next fix and I literally couldn't manage then it got moved down to 10 weeks until I was put in hospital due to my pins and needles coming back but this time I had them everywhere even in my eyes and on my lips it was the worst feeling ever and then the hospital advised that I take it much sooner as my body wasn't getting enough. It's Soo hard at times but you know how your body works and if you believe you need it sooner don't stop until you get it. Good luck x
Also Ian it can be hard balancing work and p/a but you cannot over do it as it will only cause more harm to your body than good, it's sad & some people don't realise how hard having p/a is. It's not noticed at all because they see it as a controlled dies ease which is sad because the pain some of is go through just goes unnoticed x
It took me a few weeks to respond to mine, and I didn't feel much better until I got an iron supplement I could tolerate well. The B12 deficiency caused by PA would have it's own set of symptoms, and the blood iron anaemia that goes with it causes serious fatigue. Make sure ALL your nutrient levels are good, and consider the possibility that there could be more than one problem to fix - perhaps folates. Six jabs followed by a monthly boost suggests your B12 levels were very low, so it may take a while to correct. There are several different forms of cobalamine used in jabs, and it may be that you will find one more effective than another. So keep your doctor informed about your response or lack of it, report any digestive issues, and insist on repeat testing immediately before each jab to ensure you are processing and recycling the B12 well. Above all, ask for print-outs of all your blood test results so you can track progress. You may not understand the technicalities yourself, but people on this site should help explain them.
Hi Madge of course i am sceptical .. why dont you say things in laymans terms instead of confusing people with words they dont understand a lot of the people on this forum are young and confused ..you seem to have found a magic oil , rub it in.. and hey bingo we are all having a buzz .... before the dicovery of cobalamin p/a was a fatal ailment thats what pernicious means .. you say b12 is associated with p/a .. i am sorry to tell you b12 deficiency IS Pernicious anemia .. simply you are unable to absorb b12 into your stomach .thus you dont make proper red blood cells which make haemoglobin which carry oxygen to the lungs.. if your doctor does not manage you properly then the haemoglobin levels will fall till you are seriously ill ..there are not two people on this forum with same dosage of b12 injections .. does that not tell you something .. like a lot of uk doctors havent a clue i am afraid my friend if i had not gone to Greece then i would have died and also most of the words you use are greek words why ... because Greeks had the answer to haemotology centuries ago ..so please dont tell these young people a little rub of your magic oil will cure them .. p/a is a serious illness and if not looked after can lead to problems with the gastric system and other serious issues so maybe i am sceptical ... the buzz you talk about doesnt happen to deficiency sufferers it helps them bring haemoglobin levels up .. the buzz you talk about happens to normal people because it gives them extra b12 in there system ,, that is why it is a banned substance in sport ,,,.. if this oil was the miracle you about why are the rest of us not recieving it ?????