Self medicating

[Alfabeta]

I was diagnosed with b12 deficiency in June. I had my 6 injections and all was fine for 8 weeks then one of the previous symptoms started to recur. I self medicated with tablets and a sub lingual spray which seemed to work as the symptom ceased. I had my booster several weeks ago. I read almost daily on this forum of members self medicating including injecting and wondered why this was necessary if they were:

1 receiving treatment.

2 if they weren't receiving treatment, why they would need to take so much more b12 serum than advised by medical practitioners

I had neurological symptoms and should have had injections every other day but only had them every three days; and every eight weeks but was only allowed to have them 12 weekly.

Should I continue to self medicate anyway or stop and see if the doctor's injection regime is working?

I am a bit confused as to how to proceed

Chris

[clivealive Forum Support]

Guidelines can only ever be guidelines for the average person Alfabeta and the sad fact is that we are not all average.

I'm on cyanocobalamin (not Hydroxo) every three weeks because a) that is what I was started on 45 years ago and b) because that is the frequency I had to struggle with my "one size fits all" doctor to get to from originally every four weeks.

It sounds to me that you seem to have got yourself to an ideal level of B12 input but what suits you would be no good to me or many other whom you have read about on here and a lot depends on the reason for your deficiency in the first place. Tablets might work for you but would be useless for me as I cannot absorb B12 through my stomach.

Do you know what your Folate level is as this needs to be healthy in order to process the B12?

[Alfabeta in reply to clivealive]

Thank you, Clive - I am aware of the need to self medicate and do so but I understand from what I have read that there is only so much b12 that body can absorb and the excess is urinated away. What I am trying to find out is what is enough? I use 'boost 12' sublingual spray four times a day, take two 1000 strength tablets twice a week and a b complex tablet daily and this is on top of my injections. Is this necessary? Is it better to wait and see and can I come to any harm by taking additional doses?

[fbirder]

I read almost daily on this forum of members self medicating including injecting and wondered why this was necessary

Because the normal treatment, whilst sufficient for many people, just isn't enough for some of us. The treatment recommended in the UK has absolutely zero basis in medical or scientific fact. There is no research - none whatsoever - that shows a regimen of 12-weekly jabs is enough to keep symptoms at bay for everybody. b12deficiency.info/blog/201...

Unfortunately many doctors won't listen to their patients and assume that the current guidelines are there with good reason. So, if you are one of the many for whom 12 weeks isn't frequent enough and you have a doctor with selective deafness, then there are just two options - live a life where you feel like the walking dead half the time, or take your healthcare into your own hands.

Should I continue to self medicate anyway or stop and see if the doctor's injection regime is working?

Definitely the latter. Cross fingers and hope that you're one of the lucky ones. But it sounds as if you're not. In that case I would try sprays, lozenges and patches. I would try pleading with your doctor to think for him/her self. Then I would look on here for advice on how to self-inject.

[Alfabeta in reply to fbirder]

Thank you for your response. I certainly found out the hard way that 12 weeks wasn't enough when one of my symptoms returned with a vengeance. But what I am asking is how much medication is enough? On top of my injection, I am using boost 12 sub lingual spray four times daily, two 1000 strength tablets twice weekly and a b complex tablet daily. Does this a reasonable dosing regime?

[fbirder]

But what I am asking is how much medication is enough?

Enough to keep your symptoms at bay.

After your next jab at the doctors stop all extra supplementation and keep a diary of symptoms. When they start getting bad again try adding one form of supplement and see if that helps. If not, try swapping it for another. Or try combinations. It's the best way to figure out how much of what is right for you.

[Alfabeta]

Thank you, that's very helpful.

Chris