Frustrated with getting action for my low B12, ... - Thyroid UK

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Frustrated with getting action for my low B12, GP and Vitamin D

whitenoise profile image
6 Replies

Hey everyone.

In update to my previous post about my low B12 (healthunlocked.com/thyroidu..., I mentioned that in my previous GP appointment I hadn’t taken control and confronted his assertions that I didn’t have B12 deficiency and it was normal. So based on hampster1’s advice, I’ve wrote a letter to my GP which I dropped off yesterday.

In the letter I explained about the ‘Protocol for treatment’ on the B12d.org website, print outs from a couple of the pages, the new BCSH guidelines and a number of other documents, which I have to admit I’ve forgotten what they were. I also picked out a number of points, mentioned my 182ng/L (180-1000) results, combined with symptoms and a connection with b12 deficiency in the family (undiagnosed). I said that further tests should be done such as anti-intrinsic factor, Homocysteine and potentially plasma MMA.

I feel like everything is interconnected at the moment. I have low B12, and I think maybe low folate (5ug/l – sorry no range provided). My Vitamin D has dropped from initially 50 nmol to just under 35 nmol over a year, despite taking 2,000iu of D3 per day (I’m now trying 4,000iu a day, despite GP telling me 800iu per day was enough). I always been a cold (in terms of body temperature) person, but do feel like over the last few years, I’ve got colder. My Rosacea appears to have got worse over the last year or so. This could all be connected with low stomach acid, or indeed the 5 or so, plus 2 large mercury (amalgam) fillings I have had for many years (which I’m thinking about getting replaced). It seems to be one big puzzle as to what is causing what, and what is symptom of merely something bigger.

Anyway, I’m not actually sure what will happen next. Maybe my GP will write back and ask me to make an appointment to see him, maybe he will simply ignore me and throw the documents in the bin. So I have booked an appointment with the same doctor two weeks from now to discuss this if I haven’t heard from him. However this could be another waste of time. It’s left me feeling frustrated since it’s all waiting, waiting, waiting.

Plus it's fighting people all the time, family/friends who think I'm causing too much trouble, "were in England not Japan" (when mention of their higher ranges), and just the whole process of having to wait ages for an appointment.

So should I be doing something else/different? Or do I just now wait?

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whitenoise
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6 Replies

Well done whitenoise. It sounds like you have taken a very well-considered and well-researched approach, and failing hearing from your GP you have a back up appointment in place! Sounds excellent to me. As for family and friends, presumably they won't be taking any meds or treatment themselves that were developed or researched in another country, however beneficial they might be ......... Seriously, you have a responsibility for your own wellbeing and it's you that will suffer if things aren't sorted, not them, so do what you need to do, to access effective and appropriate care for yourself. If they can't be supportive, don't discuss it with them, you have everyone here to talk to :-). Good luck

whitenoise profile image
whitenoise in reply to

Thanks for words of support Hypnoteq. It does seem sometimes that people here on HU are the only ones who seem to understand :)

Clutter profile image
Clutter

I think you've done everything you can for now re B12 and it's in the hands of your GP. If he doesn't reconsider and won't order the tests you requested you may need to consider changing GP or self medicating.

You may need to be prescribed a loading dose of vitamin D if your level is dropping despite supplementing. My sister's vitD was 45 and her GP prescribed 20,000iu x 2 weekly. See new guidelines published in April.

vitamindcouncil.org/vitamin...

People who are well can be astonishingly unsympathetic and lack understanding. I don't bother wasting energy debating health issues with them. It's less stressful talking to people here, who understand your concerns and know where you're coming from.

whitenoise profile image
whitenoise in reply to Clutter

Cheers Clutter, I shall wait and see what happens. Still frustrating though! ;)

cc120 profile image
cc120

I think you should self-medicate with B12 injections, as the surest way of increasing B12 levels.

whitenoise profile image
whitenoise

Just to update this thread, in response to my letter to my GP about my low B12, I have been sent for anti-intrinsic factor, homocysteine and Methylmalonic Acid (MMA) tests. I now await the results.

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