So, before COVID-19 kicked off in a big way I had some blood tests for my thyroid that revealed v low B12 levels. I've been supplementing on my doctor's advice since, and took his recommended dose of cyanocobalamin (I think 75 mcg) daily for 1 month. The plan was that I'd come off it and then re-test, and if levels were still low I would be given injections.
I did start to feel my energy levels improve slightly towards the end of the month on supplements, but I obviously haven't been able to re-test due to the current situation. So I don't know for sure if this is placebo or the supplements are working. But I'd quite like to continue with supplements until I'm again in a position to be tested for PA.
So for those of you who do actually find that supplements make some difference (I know that many people don't), what dosage and brand would you recommend for me to keep taking until I can get checked again?
Do you find Methyl b12 to be any better or worse than cyano? I have got some 1000mcg Methyl b12 on order, but wanted to check in on whether this is the right thing to try next given my history and unavailability of testing right now.
Alternatively, does anyone know if it's still possible to test privately if you take the sample at home?
thanks all.
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distractonaught
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Distractonaught. I suspect your GP gave you low dose oral B12 tablets to see if you have a dietary deficiency or an absorption problem (those with a dietary deficiency improve on low dose B12 - those with an absorption problems don't - 50mcg is too low a dose).
If you take high dose oral supplements and these push B12 levels up a bit, GP's then often mistakenly assume that there isn't an issue - when there can be (GP's often assume that levels at bottom of the reference range are 'okay' - and ignore symptoms that may still be present and need treating with injections (in particular, neurological symptoms).
Under usual circumstances, the advice would be to not take high dose supplements at this stage (assuming you can get some kind of access to a GP).
The best course of action is to book a telephone consultation with your GP and discuss the situation with them. Despite the issues some are having with getting access to GP's, blood tests, and B12 injections, they are still responsible for providing primary healthcare - and this involves the diagnosis and treatment of B12 deficiency. This is especially imported at the diagnostic stage - where you’re at now. From what we read here, some GP's are better at delivering this than others! But they all should be (people still get ill and need treatment, despite coronavirus issues).
Serum B12 test are available privately (many advertised on the internet) but many GP's refuse to accept them - and then run their own tests. It's also the case serum B12 (or active B12) blood levels are not a failsafe way to assess B12 deficiency (especially once any form of supplements have been taken). Your GP should be assessing the full picture and looking at symptoms, not just B12 levels.
Sorry there aren’t any easy answers - hope you manage to get some help from your GP.
Good luck.
P.s. Some people react badly to methylcobalamin (I did) so if you do decide to try them, watch out for irritation, agitation...or a feeling of being 'wired'. ..or just not quite right 👍
Thank you - yes I guess that was my GP's thought process. If they can't do the blood tests now (which I think is understandable) would you suggest repeating the low dose for a month once things go back to normal and requesting the test after that? I think he said it needed to be 2 weeks after finishing the course.
Do you have neurological symptoms distratonaught? If you do, then low dose supplements are not suitable (they are for dietary deficiency only) and you should be having B12 injections (these should be started and treatment continued, even given the coronavirus situation).
One of the issues here is that serum B12 levels are not an a good way of assessing B12 deficiency - and even those with levels within the so called 'normal' reference range can, if fact, still have B12 deficiency. The situation is even more complicated because you have been prescribed B12 supplements - your GP should be looking at symptoms, not just serum B12 levels).
If you do not have neurological symptoms and oral supplements keep any other symptoms at bay - all well and good, continue the oral supplements. However, if you only have minor improvements and other symptoms remain, then it’s likely you would benefit from injections instead. Most certainly, if you have neurological symptoms, then injections are the only recommended treatment in the U.K. (Might be worth looking up neurological symptoms associated with vitamin B12 deficiency - some people have them without realising that they’re neurological symptoms - or that they have them).
It’s also worth noting that GP's who understand B12 deficiency are continuing B12 treatment regimes during the current crisis (as per BMA and RCGP guidelines). It's only those who mistakenly assume that B12 injections are 'not essential' who are stopping injections and prescribing 50mcg oral supplements (no good for those with absorption problems).
Given that you've had chronic GI symptoms for some while (which haven't been investigated) and a family history of autoimmune conditions, it does make absorption issues more likely (in which case, low dose oral supplements Won't be suitable).
Think if I was you I'd book a telephone consultation with your GP to discuss further...with a view to continuing oral supplements or better, going on to B12 injections (in view of ongoing GI issues, the likelihood of absorption issues, and family history of autoimmune issues - and most especially if you have neurological symptoms). Also worth asking for a referral to a gastroenterologist for further investigation of GI issues (waiting lists are usually fairly lengthy and hopefully the lockdown will be over by the time an appointment comes through - so no reason for your GP to delay referral).
If you have further unexplained health issues, also worth asking your GP to test auto-antibodies (ANA blood test, etc.) to check for other potential underlying autoimmune conditions (they tend to run in families - and arrive in clusters - unfortunately).
Neurological symptoms: it's kind of hard to say for sure as I have been diagnosed with ADHD which is characterised by poor attention, lapses in concentration etc, which overlaps with a lot of the symptoms of low B12. I already take quite strong stimulant medication for that which comes with its own set of side effects, but at the moment it's not 100% effective and I've noticed my memory is a bit worse than usual.
It's possible I have both issues of course. But I did look at a list of more specific low B12 symptoms and found I had a lot of them - the one that surprised me the most was tinnitus: I've had this extremely badly for over a year. Basically I was diagnosed as being B12 deficient at the start of this, and beyond slightly better energy levels I haven't noticed any of these other issues improving since the supplements.
As for the autoimmune stuff I do already have this going on as I've got hashimotos thyroiditis and my antibodies were off the scale high at my last test. The Dr didn't seem particularly bothered by this.
So I think I'll give the GP a call again and see what they can do and when - if I have to wait a few weeks I think it's fair enough. But my hunch definitely is that there's a digestive issue at the root of all of this and it is a pain how difficult it seems to be to get a referral for this.
I was wondering if your GP had tested for other auto-antibodies (ANA, ENA etc.) as it’s possible to have several autoimmune conditions at the same time - so there may be other (as yet undiagnosed) autoimmune conditions going on, besides Hashimoto's?
If these auto-antibodies were found to be raised, this would require referral to a rheumatologist for further, more detailed investigations.
Tinnitus - yes, that can be caused by B12 deficiency - also by many other things to (including quite a long list of medications).
It's very tricky when there are so many things going on at once since the potential for cross-over symptoms between different medical conditions is high. The only way to know for sure what may (or may not) be due to B12 deficiency is to...give appropriate treatment for B12 deficiency and monitor to see what symptoms resolve.
Good luck with it all. Post and let us know how you get on 👍.
Hi again! So I called the GP at the end of last week having been dealing with the usual symptoms and was just told they won't look into it yet as it's non urgent. I'm not going to argue as obviously there is a pandemic on. But I am wondering what I can best do to manage in the meantime. Should I take this opportunity to allow any previous B12 to properly leave my system before returning for the NHS tests next month (which the GP has agreed to) or take something to stop myself feeling rubbish? Given that I feel rubbish anyway I am leaning towards the former option.
if you are currently experiencing neurological symptoms - eg tingling in hands/feet in which case you should already have been started on injections rather than put on a dose suitable for someone without an absorption problem.
in which case your deficiency could be dietary so I would stick with the lower doses for the moment just to ensure that you don't skew things (and despite what fbirder keeps repeating there is a lot of evidence - albeit small scale studies) showing that patients with all types of absorption problems do have passive absorption but that this only seems to work for somewhere around 2/3 of people regardless of absorption problem. However, it will always be a much slower way of raising B12 levels in patients with absorption problems than injections will be.
There are several mechanisms by which a thyroid problem can lead to problems absorbing miicronutrients - ranging from altered gut transit times (and increased risks of conditions such as SIBO) - to the higher probability of developing another auto-immune disease if you already have an auto-immune disease - so if you have hashimotos or graves there is a higher chance of your developing PA (an autoimmune gastritis)
Thank you. While I'm sure my diet is a factor, I suspect there is more going on because I regularly eat cereals and other fortified foods (plus also eggs/dairy) and my levels were so low that it seems this just wasn't registering. I also have unexplained weight loss. So my guess is some absorption issue is the problem.
Thanks for the info on thyroid - I have hashis and a lot of chronic gut problems that have never been investigated. Really hope I can shed some light on this soon!
There is no real evidence that high dose oral works in people with PA.
If you are a PAS member then you can watch the video of Dr Hajo Aurwerda at the 2019 PAS conference. He talks about the dutch guidelines which say that they should always try oral treatment first. Then he goes on to examine the 'evidence' that supports the use of oral instead of parenteral B12. At 13' 30" he summarises it thus:
"Based on these two stupid studies they say the oral supplementation is as effective"
Dr Aurwerda is described as:
"Dr Hajo Auwerda is a haematologist with a special interest in vitamin B12. He is known in the Netherlands as the B12 expert. He has written dozens of scientific publications in leading medical journals and is a sought-after speaker at international medical conferences. From this position he has built up an (inter) national network of doctors, clinical chemists and nutritionists who all have many years of experience in conducting research into the consequences of B12 deficiency. He now uses these contacts and partnerships at B12 Clinic where, in addition to patient care, clinically relevant research is being conducted to attain a clear medical consensus and adequate tests to speed up diagnosis and therefore treatment. From all over the country and abroad, GPs and specialists refer their patients to him"
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
.....of course, being a lifelong vegetarian does not give you immunity from pernicious anaemia !
(The problem for you here might be proving this to your GP.)
You might have a dietary deficiency of B12, you might have a B12 deficiency related to your thyroid problem, or related to something else entirely. You might have pernicious anaemia.
I have B12 deficiency, been a vegetarian for about 40 years, but also have a family with a strong history of autoimmune conditions: Grave's disease (thyroid condition), psoriasis, vitiligo etc. If my B12 deficiency condition, whatever it is/was, was able to be rectified with a few injections, it would have happened quite early on. I have been having regular B12 injections for over 4 years now, and still have symptoms.
You can see how complicated this can get and because this may take a while to untangle, I would suggest writing a list of your symptoms, and keeping a daily record of when these appear and how severe they are. I still do this. Although I have never found a consistent pattern immediately relative to injections, it helps me enormously to see very, very gradual improvements in symptoms, and has helped some of the consultants I've seen. It has taken many years, just as I'm guessing the deficiency took it's time to become evident. Sometimes, it gives you a sense of being on the right path if nothing else; whenever I'm feeling as if I'm getting nowhere, stuck in the doldrums, I look back at how bad it once was. Never that bad now, nowhere near.
I never had tablets only injections for B12, but was prescribed tablets initially for low folate and ferritin -a 3-month supply- which temporarily lifted both only for them to drop back down. It took a few years to stabilise these at a good level by much supplementing and dietary efforts made no difference. I did try a sub-lingual B12 spray as a top-up, but it didn't do anything for me personally.
Hopefully in your case, the answer will prove to be dietary alone, but worth having amassed evidence if it turns out to be a more complex issue. Folate, ferritin and vitamin D levels can also be affected- I would add thyroid to this list, but you already know that.
I did also have a hydrogen breath-test for SIBO (small intestine bacterial overgrowth) because MMA (methylmalonic acid) was raised. This was on NHS via Haematology consultant.
Are you UK-based ?
Do you ensure that you get as much B12 from your diet as possible : fortified cereals, fortified "milk" products (eg Kokomilk), cheese, eggs ?
Thank you - yeah, I am UK based and have the same family history of autoimmune conditions as you do by the sound of it. I have had really bad gut issues most of my adult life but have no good idea of the cause, and also cannot put on weight no matter how much I eat, which is why I'm convinced there's an absorption issue going on somewhere.
Mainly I'm just really, really tired!
I do eat fortified cereals etc and also have dairy products in my diet as I'm not vegan.
Will try and keep a diary of this stuff, as you say it does seem to come down to keeping 'evidence'. I think I'm symptomatic most of the time though tbh - constant tummy problems, skinniness, fatigue, chronic constipation etc!
I first went to the GP with everyday fatigue, aching joints (esp. back, hip) and diarrhoea -way back at the beginning of 2015. Slept a lot : if I didn't get 2 or 3 hour nap in afternoons, I would sleep 14/15 hrs at night - couldn't work at all for well over a year.
It really won't always be like this, so don't accept this as your "new normal" no matter how long it takes. Difficult times right now.
If you list symptoms and record frequency etc. leave some gaps at the bottom of your list: some long-term complaints that you have forgotten about won't be obvious as symptoms until they have started healing !
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