When I first started this journey/odyssey/quest it was my understanding that all I had to do was take loading doses then find my maintenance dose. Then again long ago I thought I would fall in love, get married and live happily ever after.
I want a divorce from B12 deficiency. Actually I want an annulment.
I also believed that if you are not B12 deficient than a larger amount will have no effect.
However I have no doubts that those that state they need more B12 at times are correct.
Does it not follow that if you are on a maintenance dose and at times need more that your maintenance dose is to low?
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WIZARD6787
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Oh dear... I think of it as 'If it works, it works. If it doesn't work, try something else.'
Injected B12 is the quickest way of getting stuff going, and preventing further damage. This is whether you have PA or not. However, once you're sorted, you may find that oral therapy works for you, but then again, it might not. We don't currently have any tests that will tell you one way or the other.
Dull, I know, but that is [as far as I'm aware] the situation.
So at least a diagnosis even if people still have to fight with the one size fits all treatment
Many of us have no diagnosis.
I personally have tried all sorts of oral b12 in high doses.
In sn attempt to have less frequent b12 Injections.
Im glad that it was initiated by my Gp.
I was totally 'onboard'
Her prescription of 50mg oral b12 tablets twice a day was soon upped to 2000mg az I bought some .
Sometimes I thought they did something .
But nothing compared to an Injection.
It's on my medical notes at least.
And still not back to anywhere near 'the old me after 4 years.
If a dietary cause sbd caught early yrs oral supplements can turn you round.
My sister only needed oral b2.
My friend laoding doses of b12 injections then oral b12.
My friend in Csnada had a misdiagnosis of bipolar 🙄 before b2 deficiency/ PA diagnosed.
Needs weekly cyanocobalamin injections.
M daughter had the 'full works ,x including megabolistic anaemia very low b12 80pg/ml
Low folate ferritin 9. Digestive problems.
PA not on her medical notes ??
Reliant also on b12 injections.
My mum no cause found.
Serum level f b12 low .
Needs b12 injections.
They are just in my small world.
Oh and neice . Oral b12 only needed as dietary.
So without a label as you quite rightly say
If it works it works.
Just very annoying when I've been told psychological dependence perhaps
A placebo.
Ask my husband who was very cynical at first of so many b12 injections needed.
It doesn't make sense as the science has yet to understand it .
I did read once that if your body needs b12 and gets it suddenly in high doses via an injection 💉 you then need injections for life as any low % of processing stops.
You then can only operate at very high levels in your system.
This is not the case if you can process it from your diet but wasnt getting enough.
I had treatment for depression for years that was eventually diagnosed as bipolar type 2 = most depression with periods of productive high activity. No medication touched it - now 3 years of EOD and I am much improved yet the decades of misdiagnosis have left a big scar in my activity levels. At least I now know what is was/is.
I collapsed and was taken to casualty with lights and siren. They though I was going to die so bloods were rushed thru very quickly and I was never told the results. I was hospitalised for 8 days while they infused saline and B12 into me. So any subsequent tests would just shown a huge amount of B12.
The key would be that no antidepressant nor mood stabilising medication worked at all. In the end I was put onto lithium as they didn't really know what was happening. It didn't work either and just made me feel low. I would say that diagnosing mental health issues is extremely difficult as is the treatment.
You can “ get a divorce/ annulment”. from B12 deficiency as long as it’s not caused by Pernicious Anaemia . I’m afraid Pernicious Anaemia is for life . We need more research on the subject of PA . There is no money in it for “Big Pharma “ so we are on our own .
We are all different , and we have to find our own way through the P.A. jungle , due to the ignorance of the medical profession who often don’t even follow the few guidelines . I’ve read so many posts recently on the forum from desperate patients who have been diagnosed with P.A years earlier , who have suddenly been denied B12 injections because their B12 results were above range . It beggars belief !
Thank goodness for the marvellous Pernicious Anaemia Society, Martyn Hooper and this forum .
Pharmaceutical companies and the physicians that approve everything they do, don't have our best interests at heart. Nor do those that practise the applied science of medicine. I read and study researchers work although I am guessing they have their own interests at heart. Patients lives matter, it is never the focus.
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