Potential B12 Deficiency? Help!!

[BennyBoy79]

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

[Gambit62]

Don't know if you are aware but there is a community sponsored by the Pernicious Anaemia Society (PAS).

As you say it is possible that the drugs you have been taking for the gastric problems may be inhibiting your ability to take up B12 - zantac is a classic for that. Or it may be that you have developed an autoimmune response which means that you are producing anti-bodies to either intrinsic factor (the binding agent that enables you to absorb B12) or to the parietal cells (which absorb B12) - if this is the case then trying to take supplements orally may be counterproductive as you won't absorb the extra B12 efficiently anyway.

You do need to speak to your GP and get the results of your tests. People on the PAS site may be able to give you some advise based on that. You also need to keep a close eye on your B9 and B6 levels - B9 is key in enabling you to use B12 once it has been absorbed or got into your system somehow.

Pernicious Anaemia is a bit of a misnomer - the problem is not absorbing B12 which can lead to anaemia (which was one of the things that killed you before artifical forms of B12 were developed to treat the condition). You can have Pernicious Anaemia without actually having Anaemia.

Test for Active B12, IFA and PCA are the ones that you need to go for if you want to try and get a proper diagnosis and you need to be speaking to a Hematologist rather than a gastric specialist.

My experience of GPs is that they don't really understand much about B12 - lets face it there are so many conditions out there and most of what they do comes from checklists and it probably doesn't feature as a possibility on those checklists as often as it should have done. Unfortunately the standard questionnaire used for diagnosing depression could equally well be used to diagnose some of the symptoms of B12 - tiredness, mood-swings etc but most GPs don't realise that. SSRI's prescribed to treat depression can affect B9 levels and actually make the problem worse.

Is there any family history of PA? It does often run in families? Also, if you have an auto-immune problem already then that also seems to make you more susceptible.

If you can, try and get your GP to listen - one thing often recommended on the PA forum is buying your GP a copy of 'Could it be B12?' and giving it to them/the practice in the hope that it will be read and may dispel some of the ignorance/misconceptions.

Important thing though is probably to get hold of blood tests results and make sure that your doctor explains what all the letters and numbers that are relevant actually mean.

Sites to look at, if you haven't come across them already

b12d.org/ which has a link to a diagnoistic tool that goes through symptoms

or PAS website - though that seems to be down at the moment.

[BennyBoy79 in reply to Gambit62]

Cheers gambit. I know about the b12 website and was going to print off and show my GP but got put off when I last saw her, asked if my problems could be b12 related and just got looked at strangely as if I was mad and got told it was my anxiety playing up making me believe something that wasn't true. It's seems unfortunately now I'm diagnosed with aspergers and anxiety I'm just getting labelled with that all the time and not getting any further. I really don't know what to do if doctors don't want to listen.

[Gambit62 in reply to BennyBoy79]

Unfortunately, as you will see from the posts over the last few days on the PAS site you aren't alone in finding it difficult to hold a conversation on the subject with a GP ... and that is totally separate from having aspergers and anxiety. I have a report at work and we both strongly suspect that she suffers from PA/B12D but she can't get her GP to listen to her either.

The nasal spray has really helped me - coping a lot better with anxiety.

Lots of people use sublingual tabs.

If you have neurological symptoms - like tingling in hands and feet, problems balancing and the tiredness - some people find that methylcobalamin is the form that works best for them - think you can get that in tablets and sprays.

Lots of supplements are cyanocobalamin - which in the hierarchy of being close to the transcobalamin form that seems to be what you need at the cellular level - seems to be furthest from the converted form. hydroxocobalamin seems to work for me - and that seems to be 2nd in the hierarchy - 3rd is methylcobalamin and that seems to be particularly helpful if there is neurological damage as it helps repair some of the cell membrane problems. Can't remember the 4th - and it is so unstable that it isn't really used.

Although you can't overdose on B12 you do need to be aware that a lot of the other symptoms are very similar to other problems - thyroid, ME, MS ... so easy to get them misdiagnosed but also important that you do get checked for those if symptoms come to the fore.

There is a link on one of the other posts on the PA site to a forum area looking at evidence that people can give to their GPs to try and convince them that they aren't just burbling - so may be worth looking through the latest few posts for that, but on the whole I don't really know how you do get your GP to listen.

[CanburyPG]

Hi,

You seem to be quite unwell but you should not get fixated on B12. The blood test IS accurate and won't be done differently if you have it done privately. Your new GP has been very thorough but you can't get to the bottom of all problems with blood tests and as your health is deteriorating (and it is unusual for such a young person to have such a problem with reflux) , I suggest you ask your GP to refer you to a Physician for another opinion. A good Gastro Enterologist with an open mind is who you want to see, and your GP is the best person to advise on this referral. Although anxiety can certainly make symptoms worse, I can't see why your Asberger's would give you these symptoms, though it might make you obsess about them .

I hope your GP willagree to this course of action if you pursue it, and wish you better soon.

[BennyBoy79]

I asked to see a gastro last time i saw my GP and she refused saying its anxiety.