Hi,So I finished loading doses on the 3rd February. I have since been back to my gp as all my symptoms are returning, given oral tablets which i havent taken but I have used an oral spray to get me through but i know really i need injections. IF was negative, but I know its not always accurate so this is why my gp gave oral supplements as he said I havent got PA, not taking into account other malabsorption issues. I wrote a long evidence based letter into my gp and all they've done is said neuro need to make a decision, as I am under than after self referring myself back to the service. Neuro have advised to continue with the spray and I am have ct scans and mris in the coming weeks.
I was meant to have my levels tested at 10 weeks, but I have read you can have it done as early as 8 weeks. I want this done as soon as possible so I can start SI or getting private injections, I feel restricted to do this at the moment because they'll say my levels are high and that will be that.
Is 8 weekly level check something I should be requesting, instead of waiting another 3 weeks.
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Hgsn
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Sigh, yet another person fighting with the medical system. Self-injecting lets you take things into your own hands. You can inject often enough to keep the symptoms away. Guidelines say not to test B12 after you have started injections. The danger of having it tested is that the doctor might conclude that it is OK now, but the problem is that it is possibly only OK because you have been getting injections. Best wishes! The IF test has a high false negative rate. Having it positive means you have PA. You can't conclude anything from a negative result.
Yep it really is a struggle to get them to listen, I sent such an informative letter in and all they've said it we've let neuro know wait to see them, but that time I'm going to be more sick! My supplied should be arriving today to tomorrow so I'm just going to start self treating, my sisters a nurse so she's got no problems doing my injections 😊
Let your sister show you how to inject — be it I.M. or sub-cutaneous . Best to be in charge yourself . I self -inject into my thighs, alternately . ( the middle outside 1/3 rd of the thigh , where the Vastus Lateralis muscle runs nearest the surface) . Sub- cutaneous is equally effective . ( tummy fat , or the front of the thigh ) Best wishes
The IFAb test does NOT have a high false negative rate; it simply doesn't detect something that isn't there, pure and simple. Not everyone with 'PA' develops detectable IFAb.
As always, the watchword is 'treat the symptoms, not the numbers'.
Just report back if the B12 spray is not helping. I had a trial of oral B12 whilst on B12 injections 2 weekly prescribed to try and get the Injections further apart.
I wanted it to work.
Recorded on my notes .
Oral B12 did nothing to relief symptoms .
Yes difficult to get more frequent injections and usually with a specialists backing.
That neurologist is ill informed .
.....move on .
I presently have retained a 2 weekly NHS prescription most of which I self Inject at home sc. .with some IM at the surgery .
The more you outline your needs the more awareness amongst the medics need fir training or reading up.
It's great we csn also buy it so won't go without.
Just refuse the repeat B12 test.
I did.
And the plebotomist recorded the reasons why on my medical record on request as to cover their backs and highlight the G.p is wasting NHS money .!
You've just insulted my profession, with 'but I know its not always accurate'! We do not perform tests that are not always accurate. If the method doesn't work reliably, we find another method. What I suspect you mean [correct me if I'm wrong] is that it doesn't always give the result you want. That's not the same thing.
People complain about the NHS, but when there's an example of being prescribed tablets [that you don't take] but use something else, prior to 'having levels checked' then you're not helping. Testing after treatment is pointless and misleading.
Whether the IFab test is "accurate" or not is missing the point. The point is about how the results are interpreted:
Q: Does it mean that a single negative result rules out pernicious anaemia ?
A: No.
..... but for many people, this will be the opinion of their GP /consultant and they are the ones making decisions about B12 injections.
Martyn Hooper writes in his book that a haematologist told him that this test "nearly always comes back negative"
- which could suggest that hardly anyone has PA or that all the wrong patients are being tested or that the test cannot identify all of those with PA.
Perhaps the test is not being used by GPs to detect the presence -at the point of testing- of Intrinsic Factor antibodies, but more often used to eliminate PA completely as the cause of B12 deficiency in patients. This can leave a patient in what Martyn Hooper labels "purgatory": without any firm diagnosis.
So, a test that may well be fit for purpose, but not a fit for the purpose used !
Your profession could justifiably feel insulted about the misuse of test results by GPs, but honestly not about patients erroneously assuming that the fault lies with the test itself. Remember, a negative result can leave them in purgatory !
Martyn Hooper had two negative results before getting a positive one. I got three negative results. The fact that our clued-up GPs continued to request these tests means only that they understood how to interpret the results properly - and that they both obviously still suspected PA as the cause.
I was offered antidepressants three times originally - and prescribed them the third time - but I didn't take them. The reason was that I was not depressed. Once that was understood by my GP, we moved on and she looked for another answer and found one.
One thing people might have have learned with the Covid stuff is that 'antibodies' aren't always simple. Some antibody titres rise and fall, like the tides. Multiple stimuli tend to produce greater amounts of antibody. Sometimes, a broad-spectrum response is seen, and loads of antibodies appear. Get bitten by a horse fly, and that generally happens.
My personal experience from doing these tests is that the lower the B12 level, the higher the incidence of positive tests. The levels have to start somewhere, and in a complicated system such as a human, things don't always follow the same pattern. One possible interpretation is that once the antibodies start to appear, then IF-mediated B12 absorption stops. Martyn Hooper's case is a good example. His first and second tests will have been earlier in his 'PA career', and his body was getting round to exhibiting the 'antibody effect'. Not everyone develops this effect.
We [the general population] do seem to think that GPs know and understand everything, and can be relied upon to interpret what comes back from the lab. This clearly isn't the case. Some do, some don't. Some GPs may have spent time in Pathology so may have a broader understanding of what goes on, but some may have spent their elective doing something entirely different.
I spent a considerable amount of time on the phone explaining the significance of results, and IFAb were a particular case in point. Of course, if I could get through to the requesting GP, it was usually simple. However, much of the time I would get no further than 'The Dragon At The Gates Of Doom' who is there to make sure that access to the GP was as difficult as possible.
Some laboratories have made this matter far more complicated, by reporting numbers for the test, when a simple 'Positive'; 'Negative'; 'Equivocal, please repeat in x months' would be simpler. The fact that a number is reported, but it's within the 'normal range' leads folks to believe that there is always some IFAb there, but it's simply because there is 'noise' in the result, and it's negative.
You're right; it's not about accuracy, it's about validity.🙂
My sister is so autoimmune that she has to trick her system by altering her food quite often ! She has psoriasis and Grave's disease too. No simple answers.
She is on immuno-suppressants, and despite being really careful, ended up with covid .... which became long covid. Now recovered, but it took a while.
Re ranges : If any patient had to wait to go out of the bottom end of the folate or ferritin range for example, the GP really cannot have looked up from their computer at all ! Sometimes struggling is highly visible.
Martyn Hooper has some irreversible damage - so a shame that earlier- stage detection was just not there for him.
Waiting for the presence of antibodies or macrocytosis can be seriously damaging to your health !
Dreadful story, but the vital immunosuppressants would have suppressed her system and potentially made her more vulnerable to Covid. As for ranges, it's worth remembering that they refer to the population, and that's why they are so wide. Variation within the reference range is important to spot, as it's showing something's happening.
Yes - that's why she was so careful, also because she is a carer.
I agree - direction of travel, so you can spot a problem early. Sadly, since my GP left, no-one is now regularly monitoring my additionals : folate, ferritin, vitamin D and thyroid.
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