GP still not getting it!

[Lurcher-lady]

Had 6 loading doses in June, Doctor gave them reluctantly as levels had risen to 400 from 140 on oral supplements. I gave her lots of info re nhs guidelines and info from PA society which she promised to read. Was told to go back in August. Felt better at end of loading shots, but symptoms (exhaustion, pain, blurred vision, dry skin etc etc) started to reappear around 3 weeks later, so started to take supplements again which did nothing. In view of this I decided to self inject every 3-4 days which is helping. Been back for check up today and was told it can’t be B12, seems more neurological!! Go figure! Doctor says the blood tests prove I’m not deficient, so I said results are bound to be high as it’s being pumped into my body, but my body is telling me otherwise. I didn’t tell her about the SI. She told me I didn’t understand and that if blood levels were so high I was not only not PA but not deficient either. She said 3 monthly injections load the liver with ample b12 and why would you want to overload it. I asked her ‘if this was overload, why did the nhs guidelines now recommend 2 monthly (as mentioned in the info she promised to read). She said it was 3 monthly and that I was wrong. She was not prepared to budge. She sent me to the nurse for a further blood test and said I could have another shot and if that didn’t help I would be referred to a neurologist. I went to the nurse who did my bloods (after I reminded her that the bloods needed to be done before the jab). Not that it would have made much difference after self injecting. She looked at the screen and said ‘woah, you don’t need this, your bloods are way high at 400’ I told her what doc had said and she said ‘I’m well up on this as just been studying the very latest research and guidelines from Bristol University and you only need the 3 monthly shots if you have PA and you’ve not, as your intrinsic factor says so.’ I asked her if the university had decided to change the nhs guidelines back from 2 months to 3 months, she said it had never been 2 months, that was overload!’

Not sure whether to even go back at all, any ideas anyone please?

[Lurcher-lady]

Sorry forgot to mention too that doc said, if levels rise with oral supplementation it proved that the supplements were working! Can levels rise really high on oral supplements alone, despite them obviously not hitting the spot? Thanks.

[fbirder in reply to Lurcher-lady]

The body cannot tell the difference between the B12 from injections and the B12 from tablets. If tablets raise your blood levels to the same as the injections do then they should work just as well. Indeed, they should work better as there is no massive peak and trough effect.

But your high levels are obviously due to the injections.

[Lurcher-lady in reply to fbirder]

So, if B12 levels can rise due to injections and we should ignore the blood results thereafter while supplementing, does the same apply to blood levels being raised by oral supplements? What I think I’m asking is, in reply to your answer, do the blood results after supplementing orally, bring about the same meaningless levels as when injecting, as in higher levels are going to be there in the blood regardless of whether they are helping. From your reply I’m getting the feeling that if levels are raised after tablets then the body is absorbing them properly. Confused now, just as I thought I had it sussed 🤔

[fbirder in reply to Lurcher-lady]

If tablets raise blood levels then they must be getting absorbed.

But who cares about blood levels? If the tablets are reducing symptoms then there's enough B12 getting to where its needed to do the job.

[Lurcher-lady in reply to fbirder]

That’s just it though fbirder, they’re not, which is why I use the injections. My doctor though says that as blood levels increased to 400 on oral supplements then that proves that it’s going where it should be.

[fbirder in reply to Lurcher-lady]

Yes, I'm not surprised he says that. It's the same as people who inject and have high levels but still have symptoms. When I was on monthly jabs my levels were over 6000, but I would still get symptoms after 10 days.

But you can't tell that to doctors because they only believe in the numbers.

[Astridnova]

Yes. Keen on self-injecting; you don't need these ignoramuses to add insult to injury.