Where next?

[lumpymum]

I don’t know where to go next.

Been at gp this morning who suggested that the improvement I’ve had with tablet dose of b12 is psychosomatic. Ive been on 1000ug

However at one point in the last year I had been on a lower dose tablet for a short time without initially realising and felt really lousy. Turned out I was on 1/10th of the dose and once I put it up again to 1000 I felt great. So I know it’s not in my head as when unaware in lower dose my symptoms returned but I wasn’t on the ball this morning at my appointment

However recently it’s had a similar null effect. My b12 is in range at 570 (180-2000) and Gp doesn’t think this has any correlation with fatigue and post exercise fatigue in particular. He did other checks (can’t remember which) that suggest b12 isn’t an issue and fatigue isn’t a reason to test it.

My thyroid levels are spot on. All aspects. Tsh t4 t3 free t3 all perfect.

I’ve been losing weight steadily with slimming world and it’s slowed down/stopped lately in line with exhaustion returning and I’d been doing a bit more exercise.

Really deflated all the gp can suggest is some sleep hygiene programme as a precursor to antidepressants I’m sure. I don’t feel that’s what’s wrong.

I’m going to do spray and tablet to have double dose. See if that helps but I’m at a loss and really miserable at no route forward.

[fbirder]

Your B12 tablets make you feel better?

So why worry what the doc thinks - just do what makes you feel better and keep taking the tablets.

[lumpymum in reply to fbirder]

I am doing, but they don’t seem to be as effective recently. I’ll just take more in the absence of any other routes.

[Ken-ard20]

Don't you just love doctors who say this this crap psychosomatic..I pointed out asthma classed psychomatic but you treat it or can die.They insult my intelligence when they say that.You have stick to your guns be afirmative

[lumpymum in reply to Ken-ard20]

Found this since posting. Will see how I get on but meantime bought folic acid just to try something, anything to feel better.

Thanks for your reply.

b12deficiency.info/b12-writ...

[0406]

Hi there, my situation is similar to yours (I'm a fitness instructor and very fit). My GP isn't helpful at all.. asking about my 'mental health'.. have you tried transdermal patches? I'm using Pur Organica Vitamin B12 folate patches from Amazon and I had a positive response within 48 hours in that I started to feel a little better. I've also ordered all the paraphernalia for self injection as many people have suggested on this site. Had my first jab from a private GP yesterday afternoon so I know I'm safe to do my own. Think absorption is my problem.. look up SIBO.. so I'm starting digestive enzymes + HCL supplements under the supervision of a nutritionist friend. Hope that helps 😁

[lumpymum in reply to 0406]

Thank you. I’m desperate to be more active but it wipes me out. I’ll try tablets for now, got folate yesterday as that’s needed for b12 activation according to the site I posted earlier. Hopefully that will work. Next after that will have to get 2nd opinion or private but would rather educate and inform my gp surgery with a letter of complaint once this is resolved. Am certain this is the route. I looked back notes and at one point under the consultant for similar issues a few years back the only outcome was folate...! Just a one off but hoping that’s going to help along with b12 tablets and spray. If I need to I’ll try injections through private but had hoped gp would agree to trial. There’s some good letters on the link above. so I’ll try one thing at a time starting with more b12 and folate. Next I’ll see if that doesn’t work whether I can get private testing of things gp doesn’t bother with. And hopefully have some evidence to go with from there. It’s dxhausting. But I’m determined to shift my weight and need energy to do that. I’m fed up feeling wiped out whoever I do more even regularly it eventually just leaves me washed out. Thank you for the tips and relief it’s not just unfitness that’s the cause.

[0406 in reply to lumpymum]

Ps don't forget many tests don't give conclusive evidence/results so you may think repeated blood tests are the answer, but sadly they often don't tell the full story. My blood tests were normal according to my GP, but I felt terrible!

[0406]

I'm going to complain to/about my GP to as looking back, I've been to them around 5 times in the last 2 years with similar symptoms.. think my digestive system has just collapsed. Don't forget if you're not absorbing B12 folate through your gut, oral supplements may not help as you'll just excrete them.. I've learned lots from people on this site!

[Gaudygoat]

You say that your B12 is 570 and that would certainly appear to be well within normal range but did you supplement on B12 in the period leading up to the blood test? If so that may well have given the reading a false high. I don't understand why you can feel B12D symptoms which will be alleviated with a fresh injection even when the blood count is still high after the last treatment. Certainly though, if your body is not crying out for B12 then you would not expect to feel better with supplementing in much the same way that filling up a petrol tank when it is half full does not make the car go faster.

Many of us have been told that the symptoms are all in our heads but how is that any different to a headache or back pain where there is nothing visible to the outside world. The difference there are more doctors that have experienced headaches and back pain and the relief that a painkiller cam bring so they trust those symptoms when they are reported.

[lumpymum in reply to Gaudygoat]

Yes I’ve been on tablets to supplement, I suffer without them and wasn’t aware I should have no dose prior to testing. My route now seems to be best to resolve low folate as it’s used in activating b12. I’ve never had injections and not sure that’s the route I need at this stage.

[Gaudygoat in reply to lumpymum]

Yes unfortunately you are meant to go off supplementing for a good while before getting tested for low B12 so that is certainly an explanation of why you would experience the symptoms of PA when your blood count looks adequate. But as anyone on here knows, when you are on B12, the thought of coming off it for a couple of months is pretty much unbearable.

It ought not matter, as the medical advice is to treat the symptoms and not the lab results but it is shocking how keen the doctors are to disregard that written advice. I suspect their mind is on protection from legal challenges as it is always more comfortable to carry out treatment based on empirical evidence rather than anecdotal.