Confused

Hi All,

Sorry to admit that I dont understand PA at all, only that it causes low B12. I am a thyroid sufferer, have low vitd and hypoferritininemia, which is low ferritin levels but normal iron levels (both diagnosed by endo) and take supplements for these. I am gluten, dairy, sugar, legume and meat free (have been meat free for 30+ years). My very first blood test showed my B12 just above range, so of course the GP did nothing. I supplemented and got it to the 600 mark but two years later is was back down to just above the lower range again. I have a very good relationship with my GP (after a lot of hard work and several battles) and was wondering if I should ask for some investigations to be carried out, but my main questions is why cant I just keep taking B12 or is it important to get a PA diagnoses and if so why????

Sorry for being so ignorant on this subject but I am very willing to learn, do research and fight the NHS for any tests required.

Many thanks

Moggie x

22 Replies

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  • Hi Moggie :-) To diagnose PA you would need the anti-bodies to be tested - Anti Intrinsic Factor and Anti-Parietal cells. It is auto-immune - can't remember if you have Hashimotos ! You can still have PA even with a negative result for anti-bodies I have read.

    Surely it would be best for you to keep taking B12 if you are a vegetarian/dairy free - as being low can cause so many problems in the longer term.

    Only around 20% of the B12 in your blood is available to be utilised at a cellular level where it is needed - so when it is low - then it is a bigger problem than the result suggests.

    Keep taking the tablets Moggie :-)

    M x

  • Thanks Marz - I was wondering why a PA diagnoses is important as I do indeed intend to keep taking the tablets now I know that as soon as I stop them my levels fall. Yes I do have Hashi's but seem to now have that firmly under control through diet (TPO down from over 1,000 to 150). So if you were me would you ask your GP for tests (yet another fight.lol.) or just carry on supplementing. What I am really asking is will I be doing myself a disservice by just supplementing and can it lead to further problems down the line??????

    Thanks for the reply Marz - lovely to hear from you. I may PM you later in the week with a very intriguing puzzle that neither myself or Sue can solve.

    Hope you are well.

    Moggie x

  • I now have weekly injections of B12 - in an effort to try and repair nerve damage. It also helps with the back pain - which I no longer have. Just the sciatica and have just returned from the Physio who thinks he has done as much as he can. Lower spine now fused :-( I also take a good B complex to keep all the B's in balance.

    You could ask your GP to rule out PA for starters - if he is not compliant then you could ask why you are unable to hold onto the B12. Doubt if he will know !

    Have a look at the Signs and Symptoms of PA on the PAS website and see if any of it fits you too. Do you have any neurological symptoms from the B12 deficiency ? If so then your Doc should act accordingly.

    b12deficiency.info/signs-an...

    bcshguidelines.com/document...

    Speak soon...

    M :-) x

  • Hi

    Given that you say that you are 'gluten, dairy, sugar, legume and meat free ( and have been meat free for 30+ years)' is the probable cause of your low b12.

    The fact that by taking supplements you are able to increase you B12 levels substantially seems to indicate that you do not have PA which is the bodies inability to absorb B12 through the digestive system. A very simple way of looking at a very complex problem but in your case seems to fit, keep taking the supplements.

    Many vegetarians suffer from B12 deficiency

    Good luck.

  • Thank you for your answer but you know when you get that feeling that something is wrong and you cant put your finger on it, well that's how I feel, which is why I am looking into PA. There used to be a lovely girl on the thyroid site who was very knowledgeable on PA and she used to keep telling me to get it checked out as my vitamin problems (not just B12), plus other things I was posting, rang alarm bells for her.

    Don't get me wrong I will be over joyed if I do get tests done and they come back negative but I know there is a certain piece of my jigsaw missing but I am determined to find it.lol.

    Thanks again for your time.

    Moggie x

  • The symptoms of PA are the B12 deficiency that it causes.

    B12 is only found in animal products so if you aren't eating meat, fish, eggs or dairy thenyou won't have any B12 in your diet, which would lead to a B12 deficiency, unless you are supplementing or using foods that are fortified with B12. Most of the foods that are fortified are wheat based cereals so sounds unlikely that you are getting any B12 from those either.

    B12 is generally recycled very efficiently so most people need very little B12 and you could have enough B12 stored in your liver (for release in bile back into the ileum where it is reabsorbed into your blood) to last for decades even if you don't have much in your diet.

    What was the dose in the supplements you were taken? - most B12 supplements are probably around the 12mcg mark - and if you managed to raise your levels to 600 (not sure what time scale was for achieving that) then it would rather imply that the problem is lack of B12 in your diet rather than an absorption problem.

    99% of B12 is absorbed in the ileum and if there is an absorption problem then this is where it is having its impact. PA is an autoimmune response that attacks either the cells or the binding agent that allows B12 to be absorbed in the ileum. Other absorption problems include low stomach acidity - something that tends to get worse as you get older; drug interactions - including anti-acid treatments, NSAIDs, metformin, some anticonvulsives; gastric surgery affecting the ileum (which can include gastric band); genetic abnormalities affecting the ileum.

    As 1% of B12 is absorbed outside the ileum it is possible that high doses of B12 taken orally will result in enough B12 getting through - generally you are talking about 1000-10000mcg per day - so if you were taking these sorts of doses but only got the levels up to 600 it would imply that lack of B12 in your diet wasn't the only thing that was going on.

  • Thank you so much for your reply.

    Firstly, I was supplementing 1,000iu daily for about 9 months, which took my levels from low 200's to 600. That was about 2 years ago, so it has taken two years for the levels to drop back down to low 200's again.

    Secondly, I have only been dairy free for about a year and being a long standing veggie I used to eat an awful lot of dairy, but have been gluten and sugar free for about two years.

    The reason I think I might have a problem is two fold, one being that I seem to have a lot of the symptoms (but some of these can also be put down to my thyroid issues) and two is that I know having one autoimmune illness often means a second or a third may follow if diet isn't changed.

    I am puzzled by the end of your very informative reply (thanks for that) which is " generally you are talking about 1000-10000mcg per day - so if you were taking these sorts of doses but only got the levels up to 600 it would imply that lack of B12 in your diet wasn't the only thing that was going on".

    If you were me what would be your next step - a trip to the GP to ask for tests??? If so what tests and will it effect these tests that I have already gone back to supplementing???

    I am very grateful for you time.

    Moggie x

  • Yes, the thyroid does rather confuse the issue as there is a huge overlap of symptoms.

    Personally I think there should be enough evidence that you have an absorption problem and the priority ought to be treatment. It sounds as if your GP is prepared to listen but isn't aware that interpreting what is happening with B12 is a lot more complex than just reading off test results. 200 is well into the grey range where significant numbers of people actually have strong clinical signs of a B12 deficiency. The BCSH guidelines reflect this in the summary that recommends treating on the basis of symptoms and acting quickly where there is neurological involvement

    bcshguidelines.com/document...

    There is also this warning from UKNEQAS who do quality assurance for biological assays like blood tests

    ukneqas-haematinics.org.uk/...

    Elevated MMA and Homocysteine - two waste products that build up when the body is able to process B12 properly - can help to clarify where B12 is in the grey range.

    You might also need to point out to your GP that it is quite possible for 2 things to be going on so the fact that it could be thyroid shouldn't rule out B12.

    I personally wouldn't go for the hassle of IFA because the tests are so inaccurate and can be done several times before you get a proper result. At the end of the day, the treatment for a B12 deficiency caused by an absorption problem is the same - finding another way of getting B12 in - like the high dose tablets you were using - though injections are the most efficient way - but there seems to be a huge reluctance amongst GPs to try injections - probably because of the cost in nursing time actually doing the injections as the B12 itself costs less than 70p a time.

    You could try sublingual tablets or sprays/nasal sprays or skin patches as an alternative to oral tablets - work by using other membranes and may be more effective.

  • Thank you so much for you very informative reply. I have now worked out, through reading other posts on here and your excellent replies, that there is little point in me going into battle with my GP for PA testing as, for one, the are unreliable and also that the outcome is the same - supplements, which I am already doing.

    Yes my GP is very cost aware and in my five year thyroid battle with her I used to have to fight for most of my tests (even to the point of asking how much they would charge for private testing when she was refusing) but I won the fight and since every test I asked for came back very low (Vitd was 10 and ferritin was almost as low) she now knows that I know what I am doing and will agree to most things I ask her for - even when I asked her to refer me to a immunologist (and I must say is was lovely to sit in front of a doctor who actually understood the immune system) but I will only fight when I need to and fighting for B12 supplements is not something I intend to do. I asked my original question because I didn't know if just supplementing would work as I do not understand PA but you, and others on here who have kindly replied to my post, have made it clear that supplementing is the only treatment for PA so I will be asking for a B12 blood test when I have my annual thyroid bloods done to make sure my levels are where they should be (I am aiming for the 800 mark????) and, like most of my other vitamins, will supplement if and when needed.

    Thank you once again for your time and for sharing your knowledge with me, it's people like you that make it so much easier for people like me to make an informed decision.

    Moggie x

  • Hi Moggie,

    I am not medically qualified to give advice but my feelings are:

    If you have P.A it is for life not just for Christmas, so if you are diagnosed with it then the NHS will "support" you with injections of b12 rather than you having to buy supplements.

    If you are b12 deficient because of your diet then I'm not sure the NHS will "cover" you if it is a diet of your "choice" as b12 can only naturally be sourced from the foods you don't eat.

    If as you say you are "gluten, dairy, sugar, legume and meat free" for health reasons (not your choice) I guess your doctor should prescribe you with b12 injections.

    I'm sorry there are a lot of "ifs" and I wish you well for the future.

  • Thanks for that but I am not looking for medication just answers. I have been diagnosed with a vitd and iron problem but still buy my own as fighting the NHS for these just was not worth it.

    Yes my doctor can see that my new way of eating is having great benefits to my health (I have now lost three and a half stone as well as my antibodies being greatly reduced) but she still thinks I am mad to even go gluten free let alone dairy, sugar and legume free. Her question of "what exactly are you eating then" just about sums up her attitude as I have had no encouragement or acknowledgement that my diet is having a positive effect on my thyroid condition and my health in general. I was once on thyroid meds of over 150mcg's but since my new eating regime they have been reduced to 100mcg's. I also suffered badly with heart palps but they are also now under control.

    Thanks for taking the time to reply, it's appreciated.

    Moggie x

  • It's a bit of a catch 22 situation then Moggie. I think you can now get b12 and folic acid enhanced cereal products now e.g. McVitie's Breakfast range of oaty products and other breakfast cereals.

    I wish you well

  • Thanks for the thoughts but I am gluten free and I should imagine both of these are laden with gluten. I do not shop down the "free from" isles either as those type of foods are full of sugar and other nasties so if what you have suggested are GF I still wouldn't buy them.

    Will stick to taking my B12 for now and see how I go but I still dont know if it is important to get a diagnoses or to just supplement.

    Thanks again for your input.

    Moggie x.

  • Wouldn't hurt to get P.A. "ruled out" but as I understand it even some test results are "indeterminate".

    I had stomach surgery 57 years ago and was offered a diet of raw liver three times a day or monthly b12 - I think you can guess which I chose and I'm still "clivealive" at coming up to 75.

    Good wishes

  • OMG raw liver would be my worst nightmare, being a veggie (makes me shudder just the thought of it), so I dont blame you for choosing the monthly B12.

    May well see my GP too get it ruled out but, like you said, I have been told more than once that the tests results can be inconclusive.

    Thanks for taking the time to answer my question.

    Moggie x

  • Hi Moggie

    There is lots of great advice above on the B12 ( I have been having B12 injections for over 15 years now), however what is being done about your hypoferritinemia as this is very serious and is probably making you feel tired out and listless. To treat this I had to have iron infusions as I couldn't tolerate the iron tablets and due to large sections of my bowel being removed couldn't absorb it anyway. I had gone well below the "nhs's acceptable normal range for ferritin"

  • Thanks for your reply - my hypoferritinemia was a long process to correct. I was on 400mcg's iron per day for months and months with my ferritin levels barely moving from their reading of 12 (like you way below the bottom range) but they did a massive jump when I went gluten free - it took me nearly a year to get the level to 39 but two months GF saw my levels shoot up to the 90's where it has stayed now for well over a year without having to supplement. A thyroid patient needs their ferritin levels to be above 80 for their body to be able to process their medication so it is important for me to have annual checks and so far, touch wood, they are still just over the 100 mark.

    Thanks for your thoughts and taking the time to comment.

    Moggie x

  • Hi Moggie

    Thanks for replying, mine was down at 7, and I have iron infusions every year now and my level now sits around 150. Glad the gluten free diet seems to have helped, that affects a few of my family members but my gastro specialist says I haven't got it. ( I have crohns). Didn't know about people with Thyroid issues needing a level of over 100 (is that documented anywhere?), my friend had her thyroid removed 8 years ago and is now suffering with all the symptoms of B12and iron anaemia, so I will mention that to her.

    Many thanks

    Paul

  • The level needs to be over 80 and your B12 over 700 for your body to be able to convert the T4 you are taking into the T3 that is actually needs. T3 is the actual hormone the body needs to stop symptoms so Vitd, iron, ferritin, folates and B12 all need to be at a good level to convert the little white pill your friend is taking into the T3 she actual, this is then transported into the cells and again needs all the above to achieve this. Here is an exert of the linked paper.

    Iron deficiency

    Iron deficiency is shown to significantly reduce

    T4 to T3 conversion, increase reverse T3 levels,

    and block the thermogenic (metabolism boosting)

    properties of thyroid hormone.228–232 Thus, iron

    deficiency, as indicated by an iron saturation below

    25 or a ferritin below 70, will result in diminished

    intracellular T3 levels. Additionally, T4 should not

    be considered adequate thyroid replacement if iron

    deficiency is present.228

    nahypothyroidism.org/wp-con...

    Tell you friend that it is a really good article that covers iron, stress, diet and many other things that effect the thyroid and thyroid medication.

    Did she have an over active thyroid (which in most cases is autoimmune), if so then she would really benefit from a GF diet as her low vitamins are telling her that her gut is in a bit of a mess (as was mine) and a GF diet is the only way to go.

    Moggie x

  • Hi Moggie

    Many thanks for this, I am sure it will be very helpful.

    Paul

  • Your welcome.

    Moggie x

  • Hi PGF1960 -  I too have Crohns and was diagnosed over 40 years ago.  I went Gluten Free around 3 years ago in an effort to reduce thyroid anti-bodies.  It has worked for me !  With Crohns you will have a leaky gut I'm afraid so going gluten free would help to heal it and improve absorption.  I have also had endless surgeries both for the ileo-caecal TB and then several for Crohns.  My Iron levels seem fine but I do have weekly B12 injections as the Terminal Ileum has long gone !

    You do not need to be a full blown coeliac - just being gluten sensitive can be an issue .....

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