B12 deficient and normal for all other tests?!

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Right so let's start at the top! I'm a female, 16 and desperate for an answer! Firstly the things I have been diagnosed with: OCD (severe)

         Anxiety (severe)

         Depression (severe) (taking Fluoxetine 40mg pd)

         IBS (given Anti spazmic drugs)


So these are the things that I have been diagnosed with! I had a B12 deficiency at the level of 192 I think it was, so still inside the range but very low, this was treated with a series of injections. I also had heart surgery a little over a year ago to close a hole in my heart (ASD), that we suspect was causing familial hemiplegic Aura migraine! (Still get them but less and not as harsh) I had a serious reaction to the anaesthetic and ended up in a state of acute delirium, I was give a sedative that took around 4 hours to work because of the issues the delirium was causing. Aside from that I have had spells of eczema and that's about it. 

Anyway I have been to the Doctors surgery countless times now for various symptoms (listed below) :

-Chest pains 

-Headaches during day and upon waking 

-Severe Fatigue

-feeling of not getting enough breath

-suicidal thoughts (am now out of school and under the mental health service because of it)

-abdominal pain (admitted to hospital with suspected appendicitis twice (nothing was wrong according to tests))

-Irregular and very short periods

-brain fog

-lack of concentration

These are the symptoms I have at the moment. Now I went to the surgery the other day and asked what they were gonna test next and the Dr said that I've had full bloods so they've tested kidney function, liver function, stomach problems and everything, I have also had an ultrasound on my ovaries and nothing is wrong! All my tests have come back almost 100% normal minus a minute amount of blood and protein in my urine sample that they said was not worrying (This is aside from previous issues). I have looked into ME/CFS but everyone blames it all on medication or lack of sleep (I do sleep for at least 8 hours most days) I'm not sexually active so i'm not pregnant! The Drs say I'm fine but I know I'm not! Please help!!! 

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7 Replies

  • Posted

    Hi SleepyPuppy23,

    Sorry to to hear you have had all these problems and are still feeling rough. Did the B12 injections help at all? Will you be continuing with them every three months?

    In a lot of other countries anything below 500 is treated as B12 deficiency, it's only the doctors here who look at 200 as a normal level. Several people use additional

    supplements of B12, plus taking other vitamins to aid absorption. A B complex tablet is a good start, if you're not already taking one. Have they tested your thyroid function? That also can throw up similar symptoms. Or even something like Fibromyalgia? From the fact that your periods are not regular, that might indicate a form of anaemia, but low levels of iron should show up in blood tests.

    i really hope you can get some more help, perhaps someone on here will have more medical knowledge than me. Wishing you well. MariLiz

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  • Posted

    I really think there is a danger in trying to help you sight unseen.

    That could lead to your taking a bucketful of drugs and vitamins in a compulsive search for a magic bullet.

    I will put a radical proposal to you. You may be normal. I am not asking you to believe you are normal when you do not. Just to consider that maybe you are.

    Normal does not mean perfect. Sit in the mall or wherever and look at each person. Some are tall and skinny, some short and stout, some are bald, some are not so clever, some strong, some weak etc. Even supermodels are hyperaware of some imagined defect, their boobs are too big or too small, or their ears  or feet too big. Sigh. It is hard to be perfect – don’t bother.

    You won’t be able to tell by looking but virtually everyone has some health problem, a bad back, allergies, vision, hearing, high blood pressure, obesity etc etc. Welcome to the club.

    Now ok a year or so ago you had a heart issue. One thing you can be pretty sure of is that was thoroughly checked and dealt with. At the time you would have been worried about your health and maybe anxious and depressed. That is the past done, and dusted. We also know you don’t have cancer, liver problems etc etc. And sleeping 8 hours is normal.

    We also know from your age that you are growing and in a time of change and adjustment. What say we look at the basics, especially the things under your control.

    Diet. The best source of vitamins and good health is a healthy diet. That means no sugar, white bread or stuff with lots of additives. Whole grain bread and lots of coloured vegetables and fruits. Sounds a bit difficult but actually easy after a while

    Two depression is a funny thing. Usually it is called a disease, but it really is a symptom.  One guy’s  depression was due to excess coffee. Another forgot that while he was depressed after his mum died he wasn’t now. Lots of causes. Funny though one of the best treatments is exercise. Patients sent on a jog around the hospital did better than those on meds. Second another great secret is to be so absorbed in something, a book, a game, an interest, that you don’t have time to focus on how bad you might feel of you focussed on that. In other words make your focus external not on your body or mind.

    I see a major problem is anxiety. OCD can be a form of anxiety do you think? Like if you don’t wash your hands twenty times, turn clockwise 5 times,  step backwards two steps, then forwards twice, and say abracadabra six times while pulling your left ear, then the sky will fall in, which is pretty scary and a big responsibility for you.

    Anxiety is pretty scary too.  Lots of people are shy or worry that their dress looks funny or their fly is undone. Wotif wotif wotif. Actually no one is bothered much they are too preoccupied with their own things or have learned not to give a toss. Stuff happens we survive.

    There is one trick though that works. Meditation. If you have a minute I can teach you. Don’t tell anyone though because they think that you should do a special course and pay $$$$. The idea is simple. You focus on one thing. Of course you drift off, then just come back on target. With practise you spend more time on target. Not always, sometimes a bit left, then a bit right, then oops where is it, just more.

    The focus can be your breathing, your navel, or some magic word. For you I suggest the magic word RELAX.

    Okay so you just go RELAX every ten seconds or so and quite quickly one bit goes “this is stupid” (the critic bit).  “I am hungry “(the stomach bit). “The phone is ringing” (the ear bit). “I can’t do this “(the put down bit). “You should do this now” (the distractor or bossy britches bit).

    And each time that bit gets ignored and told RELAX. So it goes “Maybe she didn’t hear me”, and it shouts “I am hungry. I want food now”. And each time your response is RELAX. Finally after twenty or a hundred and twenty times those bits get the message, “Hmm maybe she means it. Maybe I should just RELAX. After all she is the boss and I tried. I told her wotif and look out but she said cool it. Okay I guess. If it makes her feel better, well …”

    Congratulations you are winning control and teaching all those pesky bits to get in line there, and RELAX, no arguments just do it.  You are the conductor, the boss, numero uno, and sure sometimes you need a prompt to watch out for that car but not all the time. There are no cars or buses in your bedroom – just guessing.

    Try this for ten minutes or so when you can a few times a day. Become the master.

    Maybe when the anxiety, the depression and OCD go some of the physical things will too. Well anyway you will feel better. Confident too. Maybe in time x y or z will  also prove helpful. That’s the future. In the meantime, now, there are things you can do. Maybe. What do you .think? Have fun. No charge, instead smile at 5 people a day.

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    • Posted

      hi sleepy puppy. so sorry to hear ur having such a distressing time. my heart goes out to u. it's often the ''accumulative'' that makes it all so difficult. therefore, there's a possibility that the b12 may have triggered a whole lot of other stuff, that hasn't as yet, resolved themselves. for example, it's well recognised that ASD is associated with low b12 levels. do u know what ur current b12 levels are and are u on ongoing b12 injections?

      furthermore, cos we're all sooooooo different chemically as we are physiologically & psychologically, we can respond very differently to nutritional & other depletions. for example, my body may compensate fairly well to a low b12, whilst my neighbour (for no definite reason) may present with neurological symptoms at the same levels & v. v. body's/systems can be very sensitive.

      u say that ME/CFS has been looked into. as u probably know, there's no definitive test available on the NHS to conclusively diagnose this syndrome. it's a diagnosis by a process of elimination. very often, therefore, it's considered a 'psychomatic' illness and often dismissed by many health professionals. there is , however, a test available that conclusively demonstrates that it exists. the best test for this is called a 'mitochrondrial profile'. it measures changes at a microscopic cellular levels and show what's going on in the energy manafacturing part of the cell. changes at this level can cause ME/CFS symptoms. unfortunately, it's not cheap but it can cut out all the ''psychomatic'' stuff & get to the crux of the matter very efficiently.

      the other step, i'd suggest to take is, to have an 'Intrinsic Factor (IF) test done at your GP's to rule out PA. PA. i feel u have what it takes to get on top of these problems with the 'right' help. keep on keeping on, till u get to the causation of these symptoms.

      best wishes


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    • Posted

      Thanks Caitlin, the B12 injections for me were one every other working day for 2 weeks so I had six in total. I am having a blood test soon to check up on the deficiency. I have researched about ME/CFS myself, Drs as you can guess won't look into it. I am actually trying to get refered to an Endocrinologist, as both my mother and I both think there is something wrong with my Endocrine system. (She has an underactive thyroid thatdidn't show up on tests for years!) I actually fit almost all the symptoms of Addisons Disease... Which is worrying to say the least... I have been tested for PA, had the intrinsic factor test. It all came back normal rolleyes I don't really know what to do x
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    • Posted

      adrenal fatigue (AF) does indeed throw up many of the symptoms u've outlined. the problem with AF is, it tends to mimic a host of other conditions. approaching it from the 'endocrinology' perspective should give a comprehensive picture of what's going on at the pivotal areas: the thyroid, adrenals & reproductive hormones. the GP may want to do some basic tests in some of these areas first, particularly the thyroid including T 3/4 etc levels to justify referring on. i think going down that route is a practical & sensible approach as it'll show up deficiencies and eliminate some possibilities. i'd consider keeping the pressure up with the GP to get these tests and a referral on. good to know u have eliminated the PA & hopefully they'll give u sufficient b12 replacement to keep ur levels high. ur doing great SleepyPuppy in keeping ahead of the medical investigation game. ur well informed, know what's going on with u & able to clearly convey this to the 'experts'. the primary health care profesionals will respond positively to this. don't let them 'fob' u off with this so called BIG division between the physical & the psychological. it's a 2 way system , the physical informs the psychological and v.v.
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  • Posted

    It seems like you are determined to find a physical basis for your symptoms. It may very well be that there is. Indeed there may be several. You may be lucky or not so determining what they may be and dealing with them is likely to be a protracted task. There are many pitfalls along the way, some general, some more likely for you. I will take a look at some.

    Firstly a lot of conditions and especially symptoms like fatigue have many, many possible causes. Routine tests highlight some. Others remain elusive. Drs are not infallible, they don’t always listen or take an accurate history. Very often under time pressure they cover the likely or easy and then skip the hard. That is sensible they do what they can not what they cannot.

    They have a saying “If you hear hoofbeats think horses not zebras.” That is the common is more common than the rare. Dr House they are not. They also know a lot of things come right with benign neglect.

    Ideally you would be able to consult an expert in say nutrigenetics and get a panel of gene tests done, and a methylation pathway etc etc. These might guide intervention to a particular pathway quicker. The dr specialising in this for autism has a book online free. Autism and ME have things in common.

    That can be expensive and most likely you would have to pay. Such person may also be hard to find. The alternative is to use your reading to explore possibilities by testing them, one step at a time. That takes time and persistence and some cash.

    Reading medical stuff can be contagious so medical students often think they have this or that. Most drs don’t treat themselves.  If you think you have Hodgkins Disease which is not common but possible, the next step is to test for it or markers of it. Such testing tends to eliminate causes. Ditto with hypothyroidism. As for ME there is a strict protocol  for diagnosis  as Guidelines put out by a consultative committee.  You may fit or not. I don’t like guessing with only a few pieces of a jigsaw. I don’t think I would agree that the methylation pathways test is diagnostic of ME. Rather it shows a problem in one or more of the most common metabolic pathways. Often this will involve some genetic variation but not always. ME can have various pathways or defects leading to a similar result.

    If you go down that road be aware that unless you are lucky it will likely be slow, frustrating and you will be dismissed and patronised. You will also be told things that are not true, not lies but assumptions, incomplete knowledge and sometimes arrogance.

    You will also at times display your ignorance. After all most of these people have spent 9 years of study and training, and may have years of experience in dealing with cases. I read it on the internet does not match. I would try to become very well informed. It helps. I would also try things systematically because being able to demonstrate changes helps. Having your dr onside helps.

    You can incorporate what you know or will eventually eg B12 helps or not, the rate you go through it or need it. If you are looking at the methylation part I would start with the methyl donors, these are products of lecithin  phosphatidyl choline, and betaine. S-adenosyl methionine is another but the body can generally make it. If the methyl groups are available then the next possible step of failure is if the enzyme that catalyses a specific conversion is not. Those are the gene bits. The task then becomes short circuiting that step. That might require taking one of the special forms of B12 or SAME. Jumping straight to the fancier forms does not first establish if the problem is before that.

    I would also start with Zinc, B vitamins and maybe magnesium. Why because they can be important cofactors. I would also take the active form of folate eg quatrefolate as many people can’t convert folic acid. Start one at a time in gradual doses. Fortunately if they help it tend to show an effect quickly. However more than one thing may be a limiting factor and the next only emerges when one is dealt with. A side effect can be that you rattle when shaken.

    OK I understand people who have a problem find it objectionable to be fobbed off with a psychological label. Nevertheless if someone has a hereditary tendency to bad temper does that excuse violence?

    Anxiety can arise in many ways. Say a difference in temperament, genetically, through early learning, through environmental stressors, as a learned response, or perhaps some physiological cause. Some suggest that sources of glutamate eg MSG and aspartame can induce it. That is testable.

    In any event whatever the cause, as far as possible, one can learnt to overcome it. That’s not psychobabble or whatever some may call it. Actually I have had extensive clinical experience with teenagers and others so know it works.

    Another reason to adopt such practises as good diet, exercise, and meditation is that will help the medical people  take you more seriously and secondly enable you to maintain some detachment and not focus on your symptoms and possible causes.  Sure you will have to, to some degree, but you want to compartmentalise it and have outside interests and focus. Doubt me? Try hitting your thumb with a hammer and see if you still feel tired.  There may be better  things to focus on. Perhaps in the future study, work, travel, family - whatever rings your bell.

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