I saw the GP who had originally ordered the B12 tests yesterday. I think it was the best GP appointment I've ever had. Such a shame she has now left on maternity leave!
My request for another IFAB test was granted. My suggestion that I then try oral supplements and then have another b12 test was agreed to, the reasoning being if they show a further decline it will be evidence I am not absorbing we can fall back on if my IFAB test is still negative. In addition she told me she would write to both my rheumatologist and gastro for guidance on whether they were happy with this course of action or if they would prefer I go straight to injections.
I almost wept when she said: "it's all very well looking at numbers and ranges but this is your life and you are being adversely affected." At last! Someone gets it!
She is writing up very detailed notes, has recommended which doctor I should see in the practice during her absence as well.
All in all a very positive experience. Now if only the wait for bloods wasn't so long!
that’s fabulous JinShei I wish you lots of luck with your replacement gp,I honestly do wonder if female gps are more clued up on nutrition and deficiencies than their counterparts,interesting thought isn’t it.best wishes x
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Welldone JinShei, So good to hear she has reconised that it is your life, and not about numbers.
Happypensionerclub, I so agree with you regarding Female GPs. It was only Female GPs who listened and took action in our case. Hope you are improving !
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hi Sallyanni thank you for asking I know your having a time of it and my hearts went out to you and your poor hubby.I’ve just posted so f your bored have a read lol.
Take care and stay strong xx
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I think it helped that she has experience of autoimmune conditions as she said her father had one and when his vitamin levels were tested he was found to be deficient in a couple. It also helped that she is more than happy to admit she doesn't know everything!
Well, she made a note to look into the fact that having a B12 injection 2 days before an IFAB test could influence the result as she didn't know that, so possibly no, does not know a negative IFAB does not rule out PA. I pre-empted the whole "but your IFAB was negative" argument by suggesting I take the oral supplements and then re-test my B12, just so I had some other evidence to show I am not absorbing it in case this second test is also negative. Thank you for your links, I will take a good look at them. Forewarned is forearmed!
I'm so glad that you got to see this lovely doctor before she left on maternity leave.
Also very good news that she gave you advice about who to see in her absence. Being non-committal is not the same thing as being professional.
And yes, life trumps stats. Quality of life does not depend on being "within range" or "just below", it sometimes depends on things like being able to stand up for more than five minutes or not having to sleep for 14 hours a night !
I have said before on here that you need a supportive GP -rather than a fruitless search for a B12 expert. You also need to know enough to argue your case. That's hard, especially when you may well have cognitive issues, memory loss and word-finding confusion !
Your eagerness to suggest a reasonable course of action certainly helped you, so very well done Hidden .
I have a ridiculous condition where, if I am hungry, my face puffs up (Hamsterface - not a medical term but an apt description). My GP knew exactly what this was - because her father had it ! It's saliva duct strictures, by the way, causing trapped saliva to swell glands- pressure not pain, thankfully.
That is why she was the one I chose to see when I became ill with what turned out to be B12 deficiency. I trusted her.
I definitely think if a GP has personal experience of a condition or one of a family of conditions they can be much more helpful. Having said that, a family member is a GP and has told patients (young patients!) that the period problems they had were nothing compared to the period problems she had! So its also personality!! I never speak to this family member about my health problems (and I have already been diagnosed with 1 uncommon condition and one much rarer condition so you would think I was interesting in a professional capacity!) because she simply is not interested.
Like all professions, there are good and bad. You cannot always expect a saint, I suppose - but you would at least expect some interest from family, whether GP or not !
[ Both my parents were teachers - so I could never make any apportioning of blame stick regarding the quality of teaching I was getting ! Later, my sisters and I all became involved in education in some way. I sort of fell into it myself - and realised then what a delight it was. ]
it was refreshing for sure! She was also a "look at the whole picture" GP which is hard to find too... But the best part was that she didn't treat me like an imbecile!
I am concerned about your proposal to use B12 serum test results, after taking oral doses of B12, as a determinant of need for further injections. Based on information from throughout the article, "The Many Faces of Cobalamin B12 Deficiency", B12 deficiency is possibly obscured in some cases due to serum levels rising due to oral B12 supplements, while B12 is still not available to the cells. An excerpt from one part of the article:
hi, thanks for your reply. I started on this B12 journey because my rheumatologist threatened to take me off the immune suppressing drugs I take because my neutrophils are too low. My googling found that there was a link between low neutrophils and low B12 which is when I remembered my neutrophils were low when I was b12 deficient 3.5 years ago so I visited my GP and she tested my B12 again. My googling had also shown that although there are cases recorded where my immune suppressing drugs can cause low neutrophils it is really rare which made me question whether the drug was causing the low neutrophils at all. My current B12 level is "normal" but I have lost over 90% of the b12 I built up over a year of injections so it seems there is an absorption problem however currently this is kind of secondary to the most pressing issue which is to get my neutrophils up. I think this is why the GP is writing to my rheumatologist and my gastro to check if they think injections are better. The b12 is just one part of a much bigger very complicated picture. I am the patient who just keeps giving as the GP said! Thank you for all the information you've given me, I'm adding it to my arsenal and will make a decision once my IFAB result is in as to what to do next. The more information I have the better so I appreciate it.
Just to be clear, though lab test results can be useful in diagnosing B12 deficiency, diagnosis of B12 deficiency does not require specific levels in lab test results. As is stated the article I referred to earlier, "The Many Faces of Cobalamin (B12) Deficiency", as per this excerpt,
"Laboratory investigations with the estab-
lishment of low serum B12 levels and elevated levels of methylmalonic acid (MMA) are the
cornerstone of diagnostics, but normal levels
of serum B12 and MMA do not exclude symp-
tomatic B12 deficiency."
In other words, the neural-symptom form of B12 deficiency is a clinical diagnosis, based as much on symptoms as on test results.
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