Despite a low B12 level (95), macrocytosis and neurological symptoms, my GP really just wanted to put me on 100 mcg per day of B12 for 3 months. Since I didn't test positive for IFABs, I had to fight to get injections, but was only given 5 loading doses.
My husband has felt unwell for some time and has been under a clinical psychologist and a psychiatrist, but with no improvement to his fatigue and depression. Since he has been on Omeprozole (a proton pump inhibitor) for many years, I suggested he check what his B12 levels were last time his blood was tested and what they are now. A few months ago they were 190 and now they have fallen to 159. Because our health board has a threshold of 150, this is considered normal with no action required.
I have recently discovered that a cousin who lives in the US was diagnosed with low B12 a number of years ago, and has been successfully treated with one IM loading dose, followed by daily sublingual tablets which he still takes. Neither my husband nor I feel strong enough to carry on fighting with our GP surgery and are considering self-medicating with sublingual B12, which is not expensive to buy.
Has anyone else tried this? It seems that recent studies have shown that even those with PA can absorb enough B12 without IF to be successfully treated with high oral doses (here is a link to the article in the BMJ: pmj.bmj.com/content/79/930/..., but sublingual should work even better as it bypasses the digestive system. I am thinking of taking 1000 mcg per day or every other day, until symptoms stop improving, and then lowering the dose. I am hopeful that this will avoid the peaks and troughs so many patients experience with getting injections that are spread too far apart.
I think I should also be taking a folate supplement, as my levels at 3.8 are maybe a little low, and even iron tablets (my haemoglobin is OK, but my serum ferritin seems rather borderline at 17). Any advice on folate and iron would be greatly appreciated as well as comments from anyone who has tried sublingual B12.
I was referred to a gastro-enterologist because of weight loss and digestive symptoms and I am being tested for coeliac disease as well as having endoscopies at both ends next week! Hopefully I will get some more answers.
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Maisiethedog
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even if high dose oral works it is going to take a long time to raise levels so it would be slow at best.Although there is a lot of hype about sublingual the difference between sublingual and high dose oral is marginal so it's really down to a process called 'passive absorption which happens in the gut outside of the ileum and averages at 1% but there is a lot of variation - I have always used doses greater than 1000mcg and do find that they can be effective for me - generally 8000mcg daily but I also use injections from time to time.
To get the most from sublingual/high dose oral its best to start it just after an injection - because it would be very slow to raise levels in the first place.
High dose oral doesn't work for everyone though - probably somewhere around 30% - regardless of absorption problem - from the comparative studies I've been able to find.
On folate - if in range then you are probably okay - unlike B12 it isn't stored in the body so is much more responsive to diet. Having a B12 absorption problem can affect other vitamins and minerals - folate and iron are the most common.
If you are supplementing then avoid doses over 1000mcg unless you know you are deficient
On iron: ferritin is generally a good indicator of iron status but it doesn't tell the whole story and there have been cases of patients getting iron poisoning because a GP acted just on ferritin. If you have concerns would be best to get an iron panel - otherwise talk to a pharmacist about a supplement.
On the results - the drop is marginally outside the accuracy of serum B12 test (20%) so the drop may or may not be significant. Having said that both results are low in range so could indicate a deficiency and an absorption problem.
Sorry to hear that you don't feel you are getting the support you need from your GP
Thank you for your very detailed and informative response. This is the first time I've really felt I can't trust/rely on my GP, and self-medicating isnot so simple. Very glad I have this group to bounce ideas and ask questions.
I can now take oral b12 between injections but couldn’t before as it wasn’t enough. I think once levels are high enough or damage is repaired maybe it works as maintenance I don’t know.
I think my issue is digestion though so maybe it has improved somewhat.
I tried sub-lingual B12 , nose and mouth sprays , normal oral and patches . Took megadoses . with no result . But I read on this site that it works for some,so it is always worth a try . I’ve had to resort to self injecting . This works for me . There is terrible lack of knowledge about P.A. / B12 deficiency , but one thing is certain. — that we are all different , and require different amounts of B12 with different methods of administration . Best wishes and lots of luck .
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