Shall I start taking 1000mcg lozenges, or should I give it a bit longer?

[petal02]

I posted before Christmas but I would like some further advice: a blood test showed I was very slightly low in B12; I'm not vegetarian, I eat a fairly normal British diet. But I did take omeprazole for several months (this can inhibit your ability to absorb b12), I stopped this in November, and the blood test showing low b12 was taken in early December.

With the above in mind, my GP wanted to see if my b12 could be boosted with tablets, rather than start on injections straight away when i might not need them. So she prescribed 50mcg cyanocobalamin, to be taken twice daily, with a blood test at the end of January to see if this has helped. Fair enough.

However I did purchase Jarrow Methyl B12 1000mcg lozenges (as recommended here) just as a precaution, in case I suddenly got much worse over Christmas. But I haven't taken them yet.

But I've been feeling quite a bit better, I have continued to take the tablets from the doctor, and began to put it out of my mind. Unfortunately the pins and needles came back last night, although they've now gone. I've been feeling really weak and fatigued this morning, and the ringing in my ears seems to have come back. Although I don't feel as bad as I did before starting the cyanocobalamin supplements.

So: am I just having an off-day, and need to be patient as I may feel ok again tomorrow? Can you have dips during recovery?

Or do I take a few of my 1000mcg lozenges, to see if this perks me up? I'm wary of starting the lozenges, as obviously this will really boost my b12 levels, and would then show a far higher b12 reading when I have my blood test, which could mislead my GP into thinking the 50mcg tablets have done the trick, therefore making her think I don't need injections?

My other question - are high dosage tablets just as good as injections?

Thanks in advance if anyone can help.

[Sleepybunny]

Hi,

I hope the new year brings you an improvement in your health.

Has your GP given you an IFA (Intrinsic Factor Antibody) test? Or MMA, homocysteine or Active B12 (transcobalamin) test?

b12deficiency.info/b12-test...

patient.info/doctor/pernici...

pernicious-anaemia-society....

Have you got recent results for folate, ferritin and FBC(Full Blood Count) tests? If your MCV and MCh is high it can indicate the possibility of macrocytosis.

patient.info/doctor/macrocy...

You mention that you eat a normal diet and are not vegetarian. If you are eating lots of B12 rich foods eg dairy, fish, shellfish, meat, eggs then there may be another cause of your previous low B12 besides diet. I don't know how long the effects of PPIs in inhibiting uptake of B12 last.

If your GP has not considered PA (Pernicious anaemia) I would be surprised and if they think PA is a possibility then I am surprised that they have not given you a trial of B12 injections. Info on B12 deficiency treatment is in BNF (British National Formulary) Chapter 9 Section 1.2 your GP will have access to a copy of the BNF.

The BCSH Cobalamin and Folate guidelines are worth reading in my opinion and give info on treatment.

[BethattheBeach in reply to Sleepybunny]

I'd also ask to include a test for Gastric Parietal Cell Antibody in your blood test. This is crucial as the Intrinsic Factor Antibody can be negative even though you suffer from PA. The GPCA is more reliable. Then, the Dr will not have to guess - at least for PA, anyway.

Good luck.

[fbirder in reply to BethattheBeach]

The National Institute for health and Clinical Excellence (NICE) in the UK don't recommend anti-GPC tests...

"Not checking for gastric anti-parietal cell antibodies

Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014]."

[BethattheBeach in reply to fbirder]

That is interesting, fbirder. Just last week a doctor told me he was happy to see the GPCA test, so I was just repeating his advice. I guess you just need the whole picture to see what exactly is going on.

[fbirder in reply to BethattheBeach]

Yes, my doc also gave me the anti-GPC test. I reckon if that's positive and you have low B12 then that's a pretty good indicator of PA.

And, with the non-reliability of the anti-IF test, I don't fancy having that one done, just in case it turns out to be negative.

[BethattheBeach in reply to fbirder]

Not sure why you would be worried about IF results? I'm probably just being vague! I do not have the IF antibody.

[fbirder in reply to BethattheBeach]

Because the anti-IF test throws up a false negative 50% of the time there's a good chance that I would test negative. That would give the docs an excuse to change my treatment because it would show that I didn't have PA. So my problems can't be due to B12.

How do you know you don't have anti-IF antibodies? As I said, if you did have them then, half the time, the test would say that you didn't.

IIRC, Martyn Hooper had three anti-IF tests before testing positive.

[Lily73]

Personally I would try to get through to the end of January and the blood test without taking the 1000 mcg lozenges. They would probably artificially inflate your blood test reading, which may, as you say, make your GP think you don't need injections. If you have a B12 absorption problem, then tablets are unlikely to be enough, you would really need injections. So try to hold off with the lozenges if you can. I know it means you might feel unwell some days until the end of January :-(.

When I was first diagnosed as deficient and had loading jabs I felt good some days but not good other days. So in my experience I did have some dips.

[petal02]

Thanks for that Pebble, I think I'll take your advice and avoid the higher dosage, the last thing I want to do is make my doctor think I don't need injections, if in fact I do! I am feeling better today, thankfully, so it may indeed have been a dip.

Did you find that once you were into a regular pattern with your injections, that you felt well most of the time?

[Lily73 in reply to petal02]

Once I was in a regular pattern with my injections I felt an awful lot better than I had done for the 3+ years I was symptomatic and undiagnosed. Mostly I feel quite well these days. However I start to feel unwell again before my injection is due - I get pins and needles, feel tired but have difficulty sleeping, non-stop headaches, digestive problems (nausea, acid, diarrhoea), and have an increase in anxiety. The tingling is usually the signal to me that something's up as the other symptoms can also be explained by other things (IBS, stress, eaten something that doesn't agree with me etc.). The usual injection interval is three months, but my GP now injects me every two months instead of three as he's giving me the benefit of the doubt. If I start to feel unwell prior to the two months I take the lozenges sublingually and use patches to keep me going and take the edge off. That said, I'm going to start keeping a symptom diary, as I'm a little concerned I might be attributing all my symptoms to B12 levels, and they might not be :-).

Some others on the forum feel they need more frequent injections too (something that GPs often are reluctant to do) - but to balance that, a lot of people I know in 'real life' find the three monthly injections to be enough (they always feel well), or don't start to flag until a week or so before their jab is due. So it's difficult to tell.

I would say, take it one step at a time. First step, work out with your GP if you need injections or if this was just a temporary drop in B12 levels due to taking the acid medication. Fingers crossed it was just temporary and you won't have the faff of injections etc :-).