So I went back to my daughter's GP yesterday after more blood tests as to why she's exhausted all the time.
They wrote to an "Endocrinologist" for advise which I couldn't understand. The Dr sat there & was talking about refering her to the endocrinology consultant, until I asked why, when obviously her B12 had dropped by 88 in 3 months, surely test her B12 again as I'm sure it will now be below the range so she can be treated. This after they point blank refuse to give her 6 loading shots to see if this helps, being only 1 point above the lower range!
The Dr agreed so she's having a blood test again today, just B12, Folate & IFA, which I asked for.
What I don't also get is, if it comes back below range, the Dr said they'll then write to Haemotologist to ask what they should do, even after i mentioned the BNF guidelines!
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Ritchie1268
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Can only imagine your frustration! Too many GPs are unwilling to think for themselves. It is sad that you have to keep pushing so hard but it has become increasingly important for nearly everyone to become their own health advocate - in your case your family member's health advocate.
I shouldn't be surprised reading some of the posts on here. The frustration is they wouldn't even try her on loading doses when I asked on 2 separate occasions as she was 1 point off lower range. Then to ask an Endocrinologist about B12, I nearly fell of me chair 😁
I said if she was in another country she would be being treated by now. If nothing changes after the blood test today, then I'll take her to my surgery & get her registered there. I think it's just pot luck now, you either get a doctor who knows about B12D or you get one who doesn't sadly.
Am so sorry to hear about your daughters plight. Good idea about going elsewhere. Hope you get a more proactive doctor who is not scared of b12 injections!! They should immediately put her on loading b12 programme.
The fairly simple B12 treatment guidelines, although not sufficiently frequent to be effective for some of us, seem to be being largely ignored- mostly by those with the least understanding of the severity of this insidious condition. This is the part that I cannot for the life of me comprehend. Easy enough to look up.
I feel despair at the thought that your daughter's GP is willing to let Haematology take the reins on a decision regarding an effective treatment regime.
I had two haematologists tell me that B12 is "toxic, carcinogenic and highly addictive". None of which was accompanied by any proof at all, although I asked several times. Only because I was too polite to just tell them I thought these statements were untrue.
I have absolutely no idea why they were so anti-B12 - perhaps just because they disagreed with my GP's earlier diagnosis of Functional B12 deficiency, confirmed by their own laboratory ? Who knows ??
The haematologist who wrote the feedback report told my GP to reduce my B12 to "certainly no more than" 1 injection every 8 weeks. Which struck me as strange advice from someone purporting to believe that the injected substance could poison me, give me cancer and/or make an addict of me ! (None of these allegations were included in her report)
Trying to fight against illogical unsupported scaremongering is futile. This is when I realised that I had no choice but to self-inject - two years ago. I agree with my GPs original diagnosis- but cannot get any better on the NHS frequency offered to me currently.
I also agree with you- get your daughter registered with a GP who has an understanding of B12 deficiency treatment or is willing to learn . The waiting times for consultants involves months of delayed treatment, and the result can again be a lottery - even with those that you imagine would have a sound understanding of B12 deficiency, symptoms, and correct treatment. Even if B12 injections start before consultants are involved, these can affect tests, results and inevitably treatment.
Tough enough when it's you - it must be a complete nightmare when it's your child.
Very best of luck. Getting her registered with your own practice seems to be the first move. Getting B12, folate and IFab test results - what to hope for ?
An appropriate response from professionals - ASAP !
As someone who became addicted to a prescription medication for 10yrs, I could 100% guarantee your Haemotologist B12 is not addictive. I don't honestly know where they get this stuff from!
The thing that gets me is, the NHS could save £Billions by catching B12D early & preventing long term damage, leading onto many other complications. But when I think back to what that clown Matt Hancock said when he was health secretary about eating Broccoli to prevent it, what chance is there?
Hopefully the tireless work Martyn Hooper does will eventually sink in. In the meantime we're all left frustrated by some, thankfully not all, clueless doctors.
I also had a Metabolics expert tell me that he understood the "sense of euphoria" experienced on injecting with B12 !! Must be doing it wrong then - for nearly 2 years now …...unless you can count the kind of trivial satisfaction I get from getting the blood spot slap-bang in the centre of the round plaster ! That's probably as euphoric as it gets.
There are so many clowns running the circus now, Ritchie1268 , that Matt Hancock wouldn't stand out if he came into parliament on a square-wheeled bicycle !
I know what you mean about the billions of pounds wasted, and it's not just the NHS. I have had to reduce working hours on return to 2 days per week and know that I've been lucky - many others have lost their jobs completely. Never mind about all those anti-depressants we keep getting offered.
B12 injections cost us about 90p - should be far cheaper for NHS in bulk-buying: so what is the reluctance if not cost? If it's the cost of a nurse for 5 minutes, why not training sessions for self-injection ? I wouldn't mind that even now: I'm a bit rubbish tell the truth. Except for the plaster positioning, at which I'm exemplary.
Stick with the ones that are willing to listen, willing to try and help, and don't waste too much time trying to educate the others. I'm not sure that they even believe what they are saying but just assume us to be beings of lesser intellect.
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I'm desperately seeking advice...feel like we're going round in circles
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