hi everyone
This may sound like a stupid question but I was wondering what makes you get pernicious anemia? Also is anyone experiencing fatigue whilst still taking the injection, I’ve got to wait another 4 weeks before my next one and I feel so tired
It’s often genetic , like many other autoimmune conditions . It’s not to do with life-style . It’s a fairly recently discovered condition , so in the past , patients were dying from it , without a diagnosis . .
You probably need your injections more often , but will find it very difficult to obtain, if at all, from your GP.
Many of us on this forum self-inject in order to have a normal life . Maybe you will have to do that ?
Best wished
where do you get the stuff from to self inject im in the uk
We get our B12 depot ( Hydroxocobalamin) ampoules from German online pharmacies . Injectable B12 is obtainable over the counter ( OTC) in Germany , unlike U.K. where it is prescription only .
Out favourite brand , called Panpharma ,mis unobtainable at the moment , and we are using a different make called Pascoe . B12 DEPOT It should be DEPOT -that is the type of b12 used by the NHS in U.K. . IF YOU DONT STIPULATE DEPOT , YOU GET CYNOCOBALAMIN, which is not used by NHS ( but is is effective !)
OBTAINABLE FROM —
apohealth.de It’s in English. No delivery charges .
One pack of 10 ampoules costs €17.84 ( ref no. 07568672 )
10 Packs of 10 ampoules cost €92.17 ( ref no. 07568695)
Also obtainable from amazon.de but you can’t use the reference numbers to order . You can get Amazon.de in English .
Packs of 10 Out of stock at the moment ,mbut they have 10 packs for €97.63
Needles , syringes swabs and sharps bins from —medisave.co.uk
When we are faced with a problem, we want to finde the cause to fix it. I’m an engineer so I think the same. However, finding the cause never really helped me recover.
Before I go into more about the journey to recovery, what was your !12 level before your first injection?
sorry to hijack this thread but I’m intrigued to read your answer!! My b12 level was 114
That's really low mine was under 100
this isn't hijacking at all lowblow. It's good to see what people were at. I felt myself fortunate that was was 190 even. the top is 1000 in western US but 2000 in some parts of the eastern US which demonstrates the medical world has no clue about this and those that do don't get heard.
Mine was 75.
omg !! 75 !! I don’t know know how you were even functioning.. you must have felt absolutely horrific .. I started feeling really poorly at around 150 but not officially treated until 114
I was , it was awful. I had not heard of B12d. I watched the doctor as she scrolled through my notes and I saw her looking at my prescription of Omeprazole, don't know how I latched on to that, then she asked me if I'd ever had my B12 tested. I was struggling to get enough breath to walk, falling into walls, doors, fell off my bike, you name it, I bumped into it. Was embarrassed to speak to anyone because my words were so muddled, couldn't follow a pattern or a recipe...I have improved some in four years but into fourth week after my injection I lie in bed in the mornings, so feel like I am living only half a life.
Got a long family history of P. A.
When my results came in the doctor said I could do another test but this result speaks for itself. Bad move. I have been told I do not have PA but B12d. No family history taken on board.
Sorry for long post. It just tumbled onto the page. 😨
PA is an autoimmune disorder which causes the body to attack the specialist mechanisms in the ileum that allow you to absorb B12 from your diet in a very efficient way.
It was first identified a few centuries ago as a type of anaemia - larger rounder red blood cells - that resulted in madness and death. We now know that the anaemia isn't the cause but is one of the symptoms. However the name pernicious anaemia remains.
The causal mechanism of PA is the B12 deficiency that it causes. There are other conditions that can cause non-dietary B12 deficiency, including Crohn's, coeliacs, SIBO, mal-absorption due to the effects of thyroid conditions on the gut transit, some drug interactions (eg metformin), tapeworm infection. Low stomach activity, which can just happen as you get older naturally - can also lead to deficiency. Some of the causes are treatable. Other's aren't.
As far as understanding what causes auto-immune conditions there are a few genes that are known to be linked to higher risk of auto-immunity but they all seem to be linked to as well to environmental factors. Unfortunately, having another auto-immune condition seems to be one of the environmental factors. Some bacterial conditions also appear to be environmental factors - so it looks as if SIBO and PA may be connected.
Mine was caused by massive amounts of steroids that suppressed my immune system to cure iritis. The following year I was crawling around on my knees with exhaustion. Took a year to diagnose even though a blood test 12 months before showed enlarged red blood cells. Asked the gp why wasn't this picked up, met with silence from him. Been fighting ever since.
I too had either above range or very close to Red blood cell distribution width. But was never sure this is actually large red blood cells. ?? I think it probably is but if someone could clarify that would be helpful .. I’m sure I’ve googled it before and it says it can indicate b12 deficiency..: even with this , below range serum b12 and multiple symptoms I was not diagnosed for another year !! Unbelievable really
Both of my parents had autoimmune P.A. So it was no surprise when I was diagnosed. My daughters now get regularly tested as part of their routine bloods - shame my doc didn't do the same all those years ago, would have saved a lot of grief ☹️
I too had a family history of autoimmunity!! Still never rung alarm bells for my doctor !!
Same here. Blood test shows signs of macrocytic anemia? Nah, she's too young for that! We'll just give her iron pills and send her away - 10 years of dragging myself through life later and demanding an I.F. test....................oh, she has P.A. ☹️
I know - this is an all too familiar story !! Very frustrating when you know something is wrong and no one listens .. the hospital are still do investigations on me as suspect m.s … funnily only things that have come back so far are h-pylori and chronic atrophy gastritis !! So both related to b12 deficiency..have an appointment with neurologist in a few months so will see what her take on it is !! But I’ve started si EOD now .. can’t allow them to mess me up any more than they all read I have .. this has been life changing for me . Loss of hearing , can’t walk , constant bowel movements, partial loss of sight, hearing and taste !! Restricted mobility.. plus much much more that I can’t think of .. ( oh yeah , memory issues ) goes on and on ! Bloody annoying
a few of my family have stomach issues also but we all have different things and yes i constantly feel tired
It happens ... genetic sometimes and sometimes life style. In the 1950s GPs made patients eat raw liver to stave off Heart Failure ..... read about PM, there is lots on the Web some true some not so true. Ask your GP for a Blood Test. The UK normal range for vitamin B12 can vary slightly depending on the lab. But a normal level of vitamin B12 in your bloodstream is generally between 190 and 950 picograms per milliliter (pg/mL). Between 200 to 300 pg/mL is considered borderline and your doctor may do more testing. You cannot have too much B12, it leaves the body via urine.
Thank you PA!
How often do you get your vit b12 injections?
How is PA diagnosed?
How is PA diagnosed?
