I was reading lots of 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)
muscle pain in legs, feet, hands, back
muscle stiffness in neck, back and calves
alternating bowel movements
ridged, and no half moons on fingernails
Do you 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 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