Potential B12 Deficiency? Help!!!

Hi

I was reading posts about vitamin b12 and wondered if you might be able to offer me some advice. Please bear with me as i try to explain my issues as quickly as possible.

I have suffered from stomach gastro problems for years. Diagnosed with relfux after endoscopy around 2006/7 and since then been on various PPI and acid suppressing drugs on andoff including: omeprazole, zantac, esomeprazole etc etc. Reflux has come and gone over the years but never really gone away and each time its resurfaced its gotten worse with ever increasing other weird symptoms.

About september last year i started to become very tired and “achey” was always ill and picking up bugs and various virus’s that always seem to take an age to get over. I started to see a physio (private) for various back and neck problems and she asked if i was getting any other health issues at the time because she had noticed that i had complete overall muscle and joint rigidity that seemed strange for someone of my age (im 35). I explained my medical history and my own confusion that even thought my diet has always been good and ive always followed all known medical (NHS) advice and online advice about reflux and gastro problems that i always seem to be ill.

My physio wrote me a letter to send to my GP to have a blood test to check for muscle atrophy (cant exactly remember what it was) and

off i went to my GP. My doctor looked at the letter and was very rude and dismissive as it why i needed the test but begrudgingly ordered it anyway. Tests came back negative.

Fast forward to the new year and my reflux is in full horrible nasty swing and so i goto GP and they prescribe “Esomeprazole” a stronger PPI and send me packing. After 2 weeks my reflux seems to be in remission and tablets are working but im suffering with bad constipation and after speaking again to my GP we come to the conculsion that the PPI is causing the toilet problems and i switch back to zantac.

At this time the tirdness and back,neck and shoulder pain has increased significantly to now include legs, knees and feet and being constantly so tired all the time, im now having increasingly more and more bouts of alternating bowel habits aswell and i feel pretty awful.

at this point i must also explain that i have aspergers syndrome that was diagnosed in 2011.

I goto new GP and sit down and explain all my medical history and try and start again from sratch. I tell her that i need an understanding doctor who is willing to listen to my problems due to my anxiety about health as a medically know co-exsisting disorder that usually tags along with aspergers side by side.

She agrees to help as much as she can and refers me for CBT therapy for health anxiety and orders a bunch of blood tests that she coins the phrase as “an good old MOT”im still to this day not sure what every test was but I do know they checked my thyroid, did a full blood count and various tests to rule out anything nasty and suspicious.

she said that we would probably find that most of my problems were due to my anxiety and once i got that under control most of my symptoms would get better.

A day went and i wondered if one of the blood tests i was about to have might be a coeliac test? I wondered because some of my main concerns were ongoing gastritis type issues aswell as tirdness, alternating bowels and muscle pain. I had had a test for coeliac disease years before when i first had reflux which came back negative BUT when i had that test years ago was already following a gluten free diet on the advice of a friend who was a dietician who knew about my long standing stomach problems before i ever went to any doctor.

I rang my GP asked if one of the blood tests was for coeliac disease and she said YES i explained that i was on a GF diet on and off and explained what had happened previously and my negative test and she explained that to get an accurate result I HAD TO BE eating wheat and gluten and that I could be a false negative. She told to go back to eating gluten and rebook the coeliac part of the upcoming blood tests for 6 weeks later to get enough gluten in my system to see if i get a reaction on blood test.

So 2 weeks later i get the results of the other blood tests (not including coeliac) and receptionist at surgery tells me nothing exceptional and everything according to the lab is “SATISFACTORY” no mention of what that meant.

5 weeks after that I get the results of my coeliac disease test and that comes back negative but due to ongoing tiredness and muscle pain doctor comes to conclusion that im gluten intolerant and that i should go back onto my GF diet permanently no gluten at all, i ask her due you think my symptoms could be due to me eating gluten and she said yes and that in a few weeks i should be feeling better.

So another 4 weeks go by,now on a GF diet but i still feel no better. bowel movements had become more stable but the tirdness, fatigue, muscle pain was even worse. I now had really bad gastritis pain and nausea aswell, wasnt sleeping well and most worryingly i had developed some kind of breathing problem. I only had to walk to about a mile and i ended up exhausted and out of breath, dizzy and lightheaded - having to take deep breaths etc and sit down for 5 mins to get my breath/energy levels back. All this was making me every anxious which of course made the breathing even worse.

The final straw was when i was playing with my little nephew and after 5 mins i became breathless, extremely tired lightheaded and felt very sick. followed by 2 days later when on a shopping trip after a day walking around the town centre the same thing happening again. It took around a couple of hours to get back to feeling normal both times.

I looked up all my symptoms and stumbled on a article about vitamin b12 deficiency and all the potential symptoms and causes and was so surprised to nearly have all of them. Was also surprised to learn that longterm stomach issues could be related, ie Gastritis issues which i had had for years on and off.

I went to my GP symptoms list in hand and her response was tear jerking for me. I said i was worried i might be b12 deficient and that i wanted to be referred to a gastroentrologist to check for possible amenia and she said i couldnt be as my levels on previous test were normal (but didnt give me actual levels recorded) - she said that all my issues including the breathing and tiredness were being caused by my increasing anxiety, said it was all in my head and prescribed me citalopram anti anxiety meds and said that was my last option.

So i looked into wether it was possible to be b12 deficient even though my blood tests said otherwise and i found a whole stack of info about NHS tests being no good and it all being down to them testing for the right things etc etc.

My symptoms now are as follows:

fatigue (ongoing for 7 months)

tiredness

muscle pain in legs, feet, hands, back

muscle stiffness in neck, back and calves

breathlessness

lightheadedness

dizzy

gastritis

reflux

nausea

alternating bowel movements

dry skin

ridged, and no half moons on fingernails

anxiety

depression

Does anyone think i could have a b12 problem, and do you think it would be worthwhile having some private blood tests to check levels? I have been thinking maybe i have a absorption problem with b12? maybe due to longterm use of PPI acid drugs or maybe due to some kind of amenia or lack of IF??

If you think its worthwhile me taking b12 supplements then what type would you reccomend? ive heard many people mention methylcobalamin form but i am new to all this.

Im sorry for the very long post, but i wanted to try and take the time to explain my problems properly - im completely at a loss with the NHS as they dont seem to be interested in the slightest.

Any kind of help would be amazing

Kindest regards

BennyBoy79

12 Replies

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  • Hi

    I haven't read everything you have written as I don't have the mental energy to do that, but I did look at your list of symptoms and yes, I had a very similar list not so long ago. I researched fibromyalgia and was later diagnosed with that, along with IBS and arthritis. In terms of treatment, I have been taking B12 along with other supplements for some months now - Vits C & D, B12, potassium, magnesium, Calcium, Glucosamine and Chondroitin, also the homeopathic remedy Rhus Tox which has been the most help of all). I'm not sure which of the others has helped most, but I researched for myself and seem to have found things that have helped me as I no longer ache much, my IBS has largely cleared up and I am feeling generally better physically and in mood. x

  • hi bennyboy79

    my son had been diagnose with mesenteric adenitis which then branch onto ibs. We have had numerous test to rule out things but nothing to diagnose what actually caused it . its because they dont know anything. after 2 1/2 years of agony 24/7 met a mum and teacher and nurse who suffered similar symtoms. was told it had all to do with food and took them 7-9 years to figure out which food caused all that problem. i took a short cut and got a referral to dietitian who gave a whole list of food to avoid. i only found two that is in our diet. broccolli and bake beans which gave out a lot of gas in the intestine. that effectively reduced the bloated tummy and agony to twice a week. we recently had a breathtest of lactose, lactulose and fructose and BINGO. ITS POSITIVE.

  • i now have a happy child unless he became undiscipline and sneak a fruitella sweets or chocolate. all in all when you got a bad digestive problem that is not resolve, sleepless night with agony and inability to eat healtily can cause the reduction of immune system and one can get sick with every bug flying around in classrooms.

  • when in pain with wind or gas in intestine, your muscle with tighten and stiff up. we use deep heat to rub onto stomach clock wise direction and lavender to relax him. seems to work. best option is to walk as well altho very painful to help fart or break wind. the sooner those wind come out from the body the sooner you get a good rest.all sorts of health problem seems to crop up but once we sort out the food intolerance bit, it all settle down. now happily goes to school and sports everyday. but still cant eat pork or bake beans and broccolli

  • Just to let you know your message was not long but actually extremely interesting. I have every symptom you mentioned and have been thinking I am going mad. Nothing works (NEVER give up on anything I think might help) and here I am years later still suffering. I don't think doctors or Gastro consultants believe me. They are not interested. Had to give up work and I had a good job. So now I am financial difficulty as well. Not tried B12 though, that's my next port of call. I am so sorry you are still suffering and beating your head against a brick wall. My heart goes out to you. Wish I had the answer!!! Much love to all those who suffer and are left to their own devices to solve the problems whether they have some success or not. This condition is miserable at best. Medical profession should be ashamed of themselves and the numbers of sufferers are increasing.

  • hi dipsy just wondering if you have had your gallbladder removed? i have a condition called sphincter of oddi, look it up and see if it matches. wishing you well

  • I would recommend complete week long detox - to completely clear out toxins - Fisher King Glastonbury offer this and then build on their recommendations

  • I would recommend complete week long detox - to completely clear out toxins - Fisher King Glastonbury offer this and then build on their recommendations

  • I would recommend complete week long detox - to completely clear out toxins - Fisher King Glastonbury offer this and then build on their recommendations

  • Hi polly, it seems that 'detoxing' has been debunked in recent years. The body continuously detoxes on its own, removing waste products and toxins. People should save their money.

    senseaboutscience.org/pages...

  • Hi, Have you tried it - perhaps you should and reap the benefits - bigpharma have invested a lot in dissing detox as it makes them no money - have only seen fantastic results in myself and many others -

  • Hello BennyBoy,

    First of all if I were you I'd copy and paste your post on the PAS (Pernicious Anaemia Society) community here on HealthUnlocked. Lots of very knowledgeable people re: B12 on there.

    healthunlocked.com/pasoc

    Secondly, you need to contact your doctor and ask for a print-out of all your recent test results, along with their ranges. We all get treated by whatever our numbers say on a print-out but it's not as simple as that to say 'satisfactory' or 'normal' when people are having symptoms. You can have symptoms when your B12 is <500 - yet a doctor would comment 'oh that's a perfect result'. Your doc shouldn't refuse your request, mine never has; I also have copies for my son, daughter and hubby. They may charge a small admin fee though to cover printing costs etc. I usually drop my doc a line and arrange to collect after a few days, to give them time. Once you have the results post them on here along with the reference ranges.

    How do I access my medical records

    nhs.uk/chq/pages/1309.aspx?...

    The medication you've been on for your gastic issues will damage the absorption of B12 so it's right that you're beginning to question it. My B12 level is at the low end of 'normal' I have many symptoms including neurological ones.

    I recently spoke to a woman who was bed-bound with a 'normal' B12 reading of< 500, also another woman with neurological symptoms with a B12 of <485. In Japan their bottom range starts at 500, that's mid-range for the UK! Also, about 80% of the B12 in our body is inactive and not accessible It's time to do some information gathering so that you can move forward.

    I supplement as do a lot of people on here. I use the B12 patches, 5000mcg, my husband uses the 1000mcg patches, and on recommendation we also use Jarrow Methylcobalamin B12, 5000mcg sublingual - meaning place under the tongue for the best absorption. ( Methylcobalamin is the superior Form of B12.) You cannot ever ovderose on B12, it is water-based and your body will wee out what it doesn't want. Folate should always be taken when supplementing with M12, I take Jarrow's Methyl Folate (was advised Folate over Folic acid supplements.)

    There are several good sites to research:

    b12d.org/

    and here is their online assessment form which you can fill in for your own benefit and research.

    b12d.org/b12-signs-symptoms...

    Another excellent site:

    b12deficiency.info/signs-an...

    You should also find out if your Iron, Ferritin and Vitamin D has been tested. Low levels can have a big impact on you. Vitamin D deficiency is very common in the UK.

    derbyhospitals.nhs.uk/easys...

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