Advice for next consultant visit

I was referred to an endocrinologist 5 months ago due to a range of issues including extreme tiredness and neurological symptoms. Blood tests hadn't shown anything conclusive other than that my B12 was at 165 and I was also low in vit D, however my GP said these were not low enough to require treatment (I've since been told by people on here that B12 at 165 is definitely low enough to cause symptoms and require treatment, but I didn't know this at the time). Nonetheless, I decided to start taking a B12 supplement which gave 400% of the B12 RDA plus folate, other B vitamins and vit C. I also started taking a D3 supplement.

I've seen the consultant 3 times so far and have another appointment next week. After my first appointment I had some blood tests and got the results at my second appointment - they apparently ruled out thyroid disfunction and coeliac disease. I had also been tested for adrenal disfunction and the results were abnormal, but the consultant felt it wasn't a reliable result as I was on the pill. He told me to come off the pill for 6 weeks and then go for another test, which I did - I'll find out the results at my next appointment. I also had a repeat test for B12 and D and a test for intrinsic factor.

Despite my B12 being low, and the consultant telling me this could suggest PA, no treatment was discussed. I didn't know then what PA was or what the symptoms could be, but when I went home I read up on them and discovered that they matched nearly all of the symptoms I was getting. I was alarmed by the info I read about permanent damage resulting from untreated B12 deficiency, so I contacted the consultant to ask about this. He told me that the repeat B12 test had shown that it had gone up to 235, which suggested that the supplement was working and that I didn't have PA, and that it was now within normal range so I did not need any treatment. I had not noticed any improvement in my symptoms since starting to take the B12 supplement 2 months earlier, which seemed to back up his view that B12 deficiency was not causing my symptoms, however I decided to start using an oral B12 spray which gives 48,000% of the RDA to see if this had more effect. After a couple of weeks of using this daily, I started to notice an improvement in my symptoms. I've now been using it for about a month and I feel MUCH better than I did before. I wasn't certain it was due to the B12 spray, however last week I went away for 5 days and forgot to take the spray with me, and I noticed a significant change in my mood, energy levels and all of the other symptoms that had previously improved. After a few days back home, taking the B12 spray again, I feel back to how I was before the break in taking it.

I'm pretty convinced now that my symptoms were/are caused by B12 deficiency, and I know from reading the posts here that people can still have symptoms even when their B12 is supposedly within "normal" range, and that the results of tests when you're taking a supplement are pretty meaningless. I'm just worried that when I see the consultant again he'll tell me that my B12 is normal so that can't be the problem. I should get the results of the test for IF, so if that's abnormal then I guess it will be more conclusive, but if those results are normal as well I'm not sure what to do. I understand from reading posts on here that IF results are not very reliable, and also that there are different types of B12 tests. What tests are the most reliable for showing up PA? Is there anything else I should ask my consultant to do, if the previous B12 and IF tests are within normal range? I don't want to be trying to tell my consultant how to do his job, but equally I obviously don't want to sit back and do nothing if I do have a condition that needs to be treated.

For what it's worth, my consultant has been very good about taking my concerns seriously and he made a point of telling me that he considers the patient's symptoms as well as their test results, so I do have faith that he is doing a good job and will listen to what I tell him. At my last appointment he told me that he was going to speak to a colleague in haematology about me to discuss whether my B12 level could be causing my symptoms, so hopefully this will have led to something useful, but any advice I can get from people on here would be really helpful so that I can be prepared if he still says he hasn't found anything wrong with me.

8 Replies

  • The IFA test is not particularly accurate - think it is somewhere around 50% so not going to be conclusive evidence by a long chalk.

    Despite what the text books may tell medical practitioners PA is NOT the only thing that can cause absorption problems.

    Part of using a sub-lingual spray is that B12 can be absorbed through other membranes and the spray is intended to allow B12 to be absorbed through the membranes in your mouth.

    B12 isn't toxic so if you want to take more than it says on the bottle - go ahead - I use a nasal spray and it wasn't until I started to use it at 3-4 times the amount on the bottle that my symptoms started to get better - and boy did they get better. I still use it at roughly that rate as things deteriorate very rapidly if I don't.

    YOu do need to make sure that your folate (B9) levels are good as the body needs B9 to metabolise and needs both for some key processes.

    about 1% of B12 is actually absorbed along the gut outside of the ileum - which is where things usually go wrong - so it is possible to flood the gut with B12 and some does geth through but you need to be taking at least 100 times RDA - so even if you are losing a lot of the spray through the gut that process will still be working.

    If you have an absorption problem then that means you have a recycling problem as the mechanism the body uses to recycle B12 - store in liver and then release through bile into the ileum won't be working well ... so you will need to continue with the high doses of B12.

    Were you supplementing whilst the test were being done - if so your levels should have been much higher if you don't have an absorption problem.

    Unfortunately the consultant you are seeing seems to have levels that are about par when it comes to really understanding B12 so although you could ask to see another specialist there's no guarantee that you would get one that wasn't actually talking out of his backside to any lesser extent than the one you have seen.

    Other things that can cause absorption problems:

    - reduced levels of acidity - tends to happen as you get older

    - gastric surgery affecting the ileum

    - genetic abnormalities affecting the ileum

    - drug interactions - very long list which includes a lot of things that might be used to treat various symptoms of B12D ... so just make the situation worse - eg antiacids, some pain killers, some antihistamines, some anti-convulsives.

    You could try discussing the absorption and recycling process with the specialist and see if they actually pick up on why what they are telling you is non-sense - worth a try I guess as it might make life easier for the next person they see.

  • Try telling him about your symptoms and the difference with high B12 plus bring him a copy of BCSH guidelines which consider treatment below 200, continuing even if IF negative and there is a clinical response.

    He is very wrong about levels. I had severe neurological symptoms at 180 which mostly resolved on alternate day injections but had been told not low enough to treat so had to put up a bit of a fight.

    Good luck!

  • Hi Gambit62,

    You sound very knowledgeable, and I would like to ask you a couple of questions please.

    My PA was picked up on a blood test when I was having investigations for something completely different, the hospital told me that I was making antibodies to the IF and that meant I had PA......

    Can you tell me why the tests for PA are not that accurate?

    As even though I get the B12 injections and have done for 2 years now, my symptoms are the same and I am having other tests done.

    Also what B12 do you use?



  • B12 serum - looks at all forms of B12 - not just the active form that your body uses - it also doesn't tell you anything about how your body is actually using B12

    IFA - not very sensitive so you can be producing antibodies (ie have PA but it comes back saying that you aren't). If you have a result that says you are producing antibodies then I think that is generally considered conclusive.

    People vary significantly in how they respond to B12. Some of us just need a lot more than the text books imply. It may be that you are one of those who needs more than you are getting - I went for about 15 months before I'd figured things out enough to know I really wasn't getting what I needed. Tried talking to my GP - who is very caring but totally clueless - left really frustrated - figured that as B12 wasn't toxic I'd just go it alone so ordered some B12 on line and whilst I was waiting for that started using a nasal spray at about 3-4 times the dose on the bottle and found that by the time the ampoules arrived my balance problems had resolved themselves, so I mainly carried on with that.

    I was a bit surprised a few months later that my problems with anxiety and depression - which went back decades and so I'd assumed weren't to do with B12 - were also going.

    On the NHS 'rations' I'd been going backwards.

    I use a mixture of hydroxo - works best for me with psychological symptoms - and methyl - which works best for neuro symptoms - particularly feeling in my left foot.

    I do also inject a bit - subcutaneously

    Personally I find that my symptoms start to return within 24 hours of my maintenance shot so I basically supplement all the time and to be honest I only go back for maintenance shots to keep it on my record.

    Having said that there is a lot of overlap between B12 symptoms and other conditions and there is a tendency for people with B12 to have other conditions as well so it is impossible to rule out that there may be other things going on.

    It may also be worth looking at your folate levels as your body need B12 and folate.

  • Your initial symptoms and levels are similar to what mine were. My routine bloods always come back normal hence the length of time and fight to test b12. I only recently found out I was also vit D insufficient. (Just above deficient reading) so I now have prescribed supplements for that too. I have probs with my stomach too and have come back inconclusive for coeliac disease - (have lymphocytes indicating auto immune but villi intact according to biopsy. But I wasn't eating enough gluten everyday for 6weeks before tests so I'm waiting to go back). If you do have stomach symptoms the blood test is only an indication- endoscopy would give a clearer picture.

  • I note your consultant has ruled out thyroid disease. Most endocrinologists are about as competent with thyroid disorders as they are with PA and B12 deficiencies, i.e. not really. Most specialise now in diabetes, partly because of its increasing incidence, and partly because of the juicy Big Pharma research grants and prescribing kickbacks that are generated as a consequence.

    Ask for a copy of your thyroid function results and post them over on the TUK forum, which is also on Health Unlocked. There are lots of knowledgeable people there who will be able to comment and advise.

  • Thanks for all the replies!

    Hillwoman, my endocrinologist is actually a thyroid specialist, and I'm satisfied that the tests I've had for thyroid dysfunction have been extensive enough to make it highly unlikely this is my problem. Thyroid disorders run in my family and most people have had to fight for a diagnosis after the basic tests came back normal for them, so we're well acquainted with the need for extra tests and I've had all of them!

    I suspect my B12 deficiency may be at least partly due to me taking Metformin for insulin resistance - I didn't know there was any connection until recently and no doctors have ever mentioned this, but it would make sense.

  • Hi,

    Has your consultant seen a copy of the updated cobalamin and folate guidelines?

    Also these might be useful as well

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