Multiple Deficiencies?

I was diagnosed with B12 deficiency around 3 years ago now, I also had low folic acid at the time, but all PA tests have come back negative and have been done a number of times. Since then I've had more bouts of ill health that have turned out to be vitamin D deficiency ,and more recently low magnesium. I also have found I need to take co enzyme Q10 and high dose riboflavin with the magnesium to control the migraines/heart symptoms/black outs I was getting. The magnesium also cleared up 5 years of chronic hives (I was told were in my head!!) alongside needing a low histamine diet. I've also had issues with vitamin C in the past, high doses don't appear in my pee, TMI I know!! 😉 I did see a gastroenterologist this year (privately) but he seemed mostly unconcerned and as most blood tests came back ok, he wasn't willing to do anything invasive as I apparently don't have enough symptoms (multiple nutrient deficiencies, inability to digest food without supplementing with hydrochloric acid, and chronic bowel issues aren't symptoms, I need to be rolling around in agony before something's wrong...good grief) and was told to keep taking the acid tablets, nutrient supplements and probiotics. Funnily enough I'm more than a little concerned about what's going to happen next, and don't really want to get ill again, as I'm fairly stable at the moment. Given I need acid tablets to digest food I get the feeling I do have chronically low stomach acid, but can't be sure. Has anyone else experienced a broad spectrum of deficiencies like this and if so did you ever find a reason for them?

18 Replies

  • You dont mention being given B12 injections so I presume you are not getting them. Trust me, if you are low in B12, and it is due to a malabsorption (is that spelt correctly?) problem then you will need them, as your diet certainly sounds adequate enough. The fact that you have mutltiple deficiencies would certainly suggest thats the problem. If this is your problem then to be diagnosed with PA is academic, because the treatment is the same. Use the info you will get here, simply by tapping on any and all posts you will rapidly find people with tremendous knowledge, certainly more than you will get from your GP, or your gastroenterologist, sadly. Go the PAS site and read everything there. Go to the library and borrow, or go to amazon and buy, Martyn Hoopers book, Pernicious Anaemia the Forgotten Disease.

    I wish you luck, and can tell you that the people here have helped me no end, as they will you

  • You may find these sites helpful. Head office: 01656 769 717

  • We need stomach acid to digest food as you know and to bind to the B12 molecules in the stomach for its onward journey. I have read on this forum that sometimes the tests for PA can be negative when in fact people do have it.

    Reading your symptoms of B12 deficiency I am also thinking/wondering if you have been tested for low thyroid. The symptoms are often very similar. I am also on the Thyroid forum as several of us are - as the conditions overlap. Low thyroid affects every cell in the body - trillions and trillions of them - and like B12/PA the testing is woefully poor and the diagnosis and treatment likewise.

    Happy to help and answer any questions....always good to rule things out so you have a clearer picture. How are your levels of Ferritin - Folate - Iron - VitD now ? Am assuming you are receiving treatment for low B12 so testing for levels is not so necessary.

    The receptors for the most active thyroid hormone - T3 - are mostly in the brain - the second highest are in the gut. So when low things begin to go wrong :-(

    Lots of very helpful people here so keep asking questions and reading :-)

  • Hey Mars, for a long time now I've thought myself to have a thyroid problem. I've had PA for 5 years now and only since recently (5 months) started to self inject with Methyl b12, my metabolism is really high and by really high I mean quite ridiculous, I tried so hard to gain weight I ate 3-4k calories per day and only managed to put on 5lbs.

    I'm not sure whether there is a possible link with "Hyper-thyroidism" as appose to the more common "hypo-thyroidism" as in most people talk about the latter one being linked with PA.

    I have a number of symptoms a part from not being able to gain weight, my hair over the last few years has been suffering its almost like the texture of hay and greying at a rapid rate, I sometimes have these weird heart palpitations that quite frankly scare me at night but luckily they're not common and I never feel cold even in freezing conditions.

    I'm thinking of going forward with "an active b12 test" because quite frankly maybe I need hydroxo injections instead of methyl which I know some people can't absorb methyl..

    Sorry for the long post but what do you think, do you think there is a relationship with PA and Hyperthyroid? (not to be confused with hypothyroid)

  • As PA is auto-immune it could be possible to have auto-immune thyroid disease. Hashimotos is the most common and you can be both hyper and hypo as the condition takes hold. Graves is the auto-immune condition causing Hyperthyroidism.

    You would need to have the anti-bodies tested to confirm - Anti-TPO and Anti-Tg for Hashimotos. Not sure about the one for Graves as I have Hashi's....

    I certainly think there is a link with autoimmune conditions and they usually like to hunt in packs :-) I also have Crohns. Also from being on this forum and the Thyroid UK one - I am aware how similar the conditions can be. To put your mind at rest I would have the tests done....could you go privately if your GP is not forthcoming ? Thyroid UK - their main website has lots of information how you can have tests done at home. Various packages are available - also discounts :-)

    Hope all goes well and worth checking. My diagnosis was based on anti-bodies alone as the TSH - FT4 - FT3 were all in range.....I live in Crete.

  • I hear a lot about people healing their autoimmune diseases with good quality nutrition like cutting out meat/grains etc and eating good quality fruits and veggies, I know PA can't be cured with nutrition sadly though but thyroid problems I hear can be.

    What is your take on this?

    PS: do you know if thyroid problems cause thin hair and rapid greying?

  • ...rapid greying and thinning hair can be symptoms of being Hypo. Also indicative of Low Ferritin - so maybe have that tested too - along with Iron - Folate - VitD.

    Auto-immune conditions can certainly be put into remission by healing the gut. This takes time. Once the thyroid is struggling I think taking medication prevents it from getting worse and the thyroid is well supported whilst the thyroid is under attack from the anti-bodies....not literally but that is the best way of explaining it all :-)

    Take a look at Thyroid UK website and take a peep at the list of signs and symptoms - you can tick the boxes. Maybe something there you have not thought of. Hyper and Hypo can have similar symptoms too :-( It is so complicated so best to read as much as possible....

  • Sorry to be unclear, I do my own B12 jabs monthly (3 monthly was not enough!), and was treated with loading doses at the time of diagnosis, my B12 levels are at 1800 at the moment (consultant told me that's 'too high' I laughed and said I was just fine with keeping it where it is!). So at least I know my apparent absorption issues are not B12 related. My thyroid is fine, have had the over and above GP tests several times through specialists over the last few years, and there's nothing untoward there. My vitamin D was still low in March, despite taking triple the recommended daily supplements, so was just told to take more! I went for a couple of sunbed sessions instead, and have been getting sun exposure in the last few weeks, I'm due another test in the next month, but I think they should be normal now.

    The thing I'm most interested in is to know If anyone else has had a cluster of deficiencies and what caused them/what treatment helped. Obviously if my stomach acid is low that's not going to help, but it still leaves me wondering if there's anything else going on, given my magnesium was low enough to be causing heart problems (caused a heart murmur that has now thankfully gone!), it has to be pretty low to do that. Either that or I'm just a very sensitive soul 😉


    Maybe this link could throw light onto your cluster of deficiencies.....

  • have you or do you take omperazole or lanzoprazole? worth looking up the link between them and other antiacids and b12 deficiency

  • I was originally on lansoprazole when diagnosed with B12d, will never touch the stuff again knowing what I do now! Haven't taken them since, but still can't get enough B12 without the jabs 😕

  • Hi have jabs every 8 weeks as I had and still have some nerve problems.......I still have to take daily sublingual b12 or I would not be able to manage my life! We all live in hope that some day someone will listen to us and allow more frequent injections so we can have a normal quality of life.

  • It sounds as if the cause of your B12 absorption problem is probably low stomach acid - hence the need to get B12 by other means - the injections.

    Unfortunately if you have one absorption problem - particularly one related to acidity levels in the gut - it isn't uncommon to have multiple absorption problems - which is pretty much what you would expect logically. Vitamin D deficiency is quite common with B12D

    Unfortunately I can't say that I'm aware that I have other absorption problems and for me sorting out the B12 sorted out most though I do have problems getting my B9 and B6 levels right - if they aren't right then I get really bad migraines so was interested in what you said about controlling the migraines etc ... are the different supplements you mention related to different symptoms or do they work together to prevent them.

    I supplement B9 (folate) and B6 although in theory I should get enough from my diet ... so may be there are some absorption issues there.

    I think your attitude when you were told that your B12 was too high (what a load of xyz!) was spot on - finding the mix that works for you is the key. My B12 is off the scale but I think I'm one of those people that has an autoimmune reaction to high B12 in serum that tries to shut down the transport mechanism because if I don't keep it off the scale then I just get all the symptoms of B12 and it just gets worse and worse, so I just have to keep the levels so high that my autoimmune response can't kill everything off ... and I feel best I've felt in decades. Definitely not going back to what I was before without a lot of kicking and screaming.

  • Could it be you need more B12? Have you tried experimenting with increased frequency / other B12 supplements eg sublinguals as well? Many people find they need more. B12 deficiency interferes with the gut and can cause malabsorption so that is one possibility if other gut issues have been excluded by docs.

  • I used to inject up to three times weekly, but have found there was no difference in the state of my health or in any of the symptoms I get for extra injections. I do find I get tired & clumsy 6 weeks after a jab, which is why I aim for 4 weekly.

  • You mention chronic bowel issues, is this frequent diarrhoea? I had B12 and folic acid deficiency because I had diarrhoea lots of times everyday - put simply, the fast transit meant nothing stayed there long enough to be absorbed.

    There doesn't have to be a 'sinister' reason for the diarrhoea, it could just be IBS. In my case it was caused by IBS plus antidepressant side effects. (If you happen to be taking them, it's worth noting that Ssri antidepressants can also cause low electrolytes - magnesium.)

    I didn't have PA, but because of the deficiencies and profuse diarrhoea the gastroenterologist did a colonoscopy and endoscopy. Nothing was wrong, but a sehcat scan showed I also wasn't absorbing bile acids, which suggested the cause of all the malabsorption was fast transit.

    I don't know if any of this is relevant, but my ears pricked up when you said you had chronic bowel issues.

  • I have several deficiencies too, so am on prescribed supplements and B12 injections. I have Hashimoto's (so under-active thyroid), I eat extremely well, get out in the sun and look after myself as well as I can. I'm afraid I have no answer to your question as to the reason for the deficiencies as my doctors are so blasé about it all and will not acknowledge any "cause" for any of it. Any suggestion that maybe it could all be linked is met with a blank stare, which is just ridiculous and annoys the heck out of me. At the end of the day, I am "lucky" in that I am getting some sort of treatment.

    There is a suggestion that I could have coeliac disease, which I understand causes absorption problems (but I already eat gluten-free and still have the deficiencies). Who knows. I am on a waiting list to see a dietician, but am not holding my breath that this will help.

  • It certainly looks as though you have an absorption issue Summer. Having had digestive problems for years, I eventually found that avoiding gluten, taking Sauerkraut before every meal, cider vinegar for any gall symptoms, and Swedish Bitters for IBS, has given huge relief, even from migraine!

    I thought this was a really good description of 'leaky gut' by Marc Ryan, which explains the origin of, not just Hashimoto's but, B12 absorption and many other autoimmune diseases too:

    "Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy

    Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability. Many researchers believe that this is ground zero for autoimmune disease. It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.

    Brush Border

    The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.

    Where Absorption Happens

    This is the place where absorption happens. And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.). One of the reasons for this is the breakdown of these brush borders.

    Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed. The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins.

    These enzymes are found near to the transporters that will then allow absorption

    of digested nutrients.

    Brush Border Enzymes

    Brush border enzymes amylase, cellulase and invertase can be effective in digesting carbohydrates, proteins, and fats without causing irritation and digestion of the intestinal walls. One problem with using large quantities of pancreatic enzymes (which are commonly found in digestive enzyme formulas) is that they may actually irritate and digest the intestinal walls.The theory about the reason for this is that they help break down proteins and your intestinal walls are made of proteins. If you have leaky gut, which many of us do, these proteins are exposed. And these digestive enzymes don't know which proteins to digest and which ones to not digest. They break down all of them.

    If you are using digestive enzymes, you should be cautious about which kind you are using. Because, if you have leaky gut, you may actually make it worse by using the wrong kinds. Brush border enzymes don't do this. They are safe, well tolerated and can be a good tool in healing these tiny little paintbrushes. "

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