Hi, I got diagnosed with Pernicious Anemia 3 years ago.
The injections helped for a while. But now I just feel tired all the time. When I asked my GP if I would feel like this for the rest of my life his response was possibly.
Why isn’t there enough knowledge about this rare blood disorder?
Does anyone take anything over the counter that helps? Please help x
Hi Ry_Anth you certainly are not alone with your feeling of tiredness (see the pinned posts alongside yours on the right hand side)
Personally I supplement with a Methylcobamalin B12 Spray each morning and I have my injections of cyanocobamalin every three weeks. I also supplement with 1 1 – Folic Acid 400μg tablet every day.
Have you thought to ask your doctor for more frequent injections?
You could always join the Pernicious Anaemia Society where you will find lots of useful articles on the subject and at the same time help with their fight to make the medical profession more knowledgeable about the disease.
Click on the link below and scroll down
healthunlocked.com/api/redi...
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
I wish you well.
I also have P.A. , and found 3 monthly injections totally inadequate . Tried to get 2 monthly because of neuro symptoms , without success . Tried patches, nose sprays , mouth sprays , sub- lingual lozenges , to no effect . Found out on this forum how to obtain B12 ampoules from German online pharmacies , etc . and self - injecting has saved me . I can only recommend it . Also really cheap . In modern parlance , it’s a “ no brainer”
I also found 3 monthly injections inadequate. Asked frequently for more frequent jabs but to no avail, I was even told at one point that they were thinking of stopping them all together til I pointed out it was PA and I was a member of this group and stopping them would be giving me a death sentence ( overboard I know!!)
But with the help of this group I sourced everything I needed to SI and things have been much better I inject every 10 days or so which is optimum for me - if I feel myself dipping before that I inject the beauty is that I’m in control of when I need it as I know my body’s things have been much more stable since.
It is a death-sentence if you have P.A. and don’t get B12 injections .It just takes a long time , and the journey you go on is simply AWFUL .Im totally convinced , it’s what my mother died of , knowing what I know now about all the different symptoms . A terrible slow death.
It's horrible and no exaggeration at all!
They stopped my Dad's injections after a blood test and he gradually declined over the next 6 months from being sparky to dead, despite taking supplements. I wish he'd let me jab him.
Yes, if only we’d known then what we know now . It really grieves us both so much . I could scream sometimes about it .
So good to friends like you who understand. xx
One particular question arises, is a low oxygen transport function by your red blood cells causing your fatigue? You may have malformed red blood cells or not enough mature red blood cells containing hemoglobin or just too low a number of red blood cells to perform the task of distributing enough oxygen to all the cells of your body for efficient function.
Lab work needs to be done to answer this. Then, from the results, the interplay amongst hemoglobin, B12, folic acid, and iron can be checked to determine which or all need to be addressed.
Also, the range of the measurement standard is set too low for the physiology of many people, meaning that many people will experience symptoms even though the measurement results show that you are within standards. So, get your results and ask others here who have more experience in interpreting what your situation may be.
Good Luck. Decades of my life lost on neuro psychiatric effects cause by borderline level anemia.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
