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
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BennyBoy79
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Wow - You have a lot of stuff going on! I'm not surprised you're confused and frustrated.
You very well could be a gluten sensitive (and you've come to the right place if you want advice with that), but I think you first need to resolve the B12 issue once and for all.
I would advise going back to your GP and asking for the exact numbers to all your recent blood tests plus the ranges; especially for B12. It might caused an eyebrow to be raised, but if you persist it's very often worth it. Terms such as 'satisfactory' and 'normal' aren't that helpful - as you have already found out. The Health Unlocked pernicious anaemia forum is very good at giving guidance on B12 levels. In my own experience, the personal range I need to be healthy is somewhat different to that recognised by the NHS (its higher). I've found I function well and feel a lot more 'with it' when I am in the 600's. According to the NHS anything over 180 is 'normal' for the test used in my area. As you can see there's quite a difference!
If you were to find out you have pernicious anaemia, B12 over-the-counter supplements would be of little use to you - because you would need injections instead.
I tried to ask my GP for my results and she just asked why and said to stop worrying that it was anxiety baring its ugly head right there at that point when i asked.
It seems that the more i push this subject with my doctors the more i am proving their point about anxiety and the more hurdles i get put in front of me - they just think im mad.
Have you tried sweet talking that receptionist instead?
That's been known to work for me on occasion! You have to make it clear that you only want the numbers and the range - because they are not qualified to give their opinion on it - and will quickly clam up if you try and discuss any possible meanings with them.
Keep persisting Bennyboy, you've come along way now it's time to dig deep and calmly ask for those readings-anxiety or no anxiety, your simply asking them to carry out their role. Stress how you need to move forward this. Good luck
Hi BennyBoy79, firstly I'm sorry that you have all this going on and that your GP appears to be making your stress and anxiety worse.
Here's a link to anxiety UK and it gives a list of anxiety symptoms, so you can see why your GP says it is stress, so please see: anxietyuk.org.uk/about-anxi...
If it is any consolation to you many of us on here were told that our symptoms were stress so we can relate to what you are going through.
If you are suffering from anxiety then why not ask your GP to refer you for counselling for stress and they can not refuse you if that is their diagnosis.
I heard a really interesting program on the radio the other day about treating people with depression with cognitive behaviour therapy and how helpful this can be. It works by helping the sufferer to change how they think about situations and then change their perception of these situations.
Now there is nothing stopping you from buying vitamin B12 over the counter from your chemist and then you can see if it helps to make you feel better. I also feel that you would benefit from learning how to deal with anxiety and having Aspergers and you already are aware of the link.
Thanks for replying, yeah im already doing CBT and yeah it helped a little and i know that anxiety can either cause or exaggerate alot of the symptoms im getting. I just seems its an easy way out for doctors now,if they have done all the routine easy tests and nothing is working then they just label it anxiety and perscribe citalopram and CBT.
Just to add ....... if you do have low levels of B12 it might be pernicious anaemia and the only way to restore levels is injections ..... this is likely as you already have gastric issues.... to be able to absorb B12 from food we all need the assistance of intrinsic factor which is secreted in the stomach ....... if none is being secreted then B12 as a (oral) supplement will have no effect whatsoever.
...... and another thing ........ anxiety is a symptom of untreated/undiagnosed coeliac disease and possibly of hypothyroidism and pernicious anaemia. Check this on-line and bring this up with your GP.
All the best for getting this sorted properly and soon
After a coeliac review blood test I was found to be very deficient in B12. After injections which I now have every 12 weeks the dietitician told me I would feel so much better, energetic etc. so I was very upset to feel no difference whatsoever; still having them but still no difference. Obviously they must be doing good but I wanted to feel some improvement!!
...maybe you need the B12 injections more often - the 3-month protocol is a money saving strategy methinks ! In the 80's it was monthly and the 90's every two months - and now every 3 months. Don't forget you need Folic Acid when taking B12 as they work together in the body..... You can buy B12 on-line and inject yourself - or ask a friend. You cannot overdose as any extra is excreted....
I am tired of dealing with these Dr's! This is messing up my entire life! Extreme chronic fatigue! No energy to live what so ever! Not even to take care of my house! Nerves so bad I can't stand it! I know what I need! I can do it myself!
You could ask on the Pernicious Anaemia Society Forum - here on HU. The PAS forum. Lots of helpful people there. I live in Crete so am able to buy B12 over the counter.
-I am new here & don't really know my way around yet. Do I just search for the PAS forum in the search box?
-Yes ma'am I have had my thyroid tested many many times but I think the tests are wrong. Are thyroid tests difficult to get accurate diagnosis from like the B12 tests are? Are there certain tests that I should be asking for that you know of?
I did find my way to the PAS forum but still haven't heard anything back on it. I posted the exact same post I posted here.
I am really worried! I just can't handle life anymore! I really need this! The worst that could happen is that it would wind up not helping me. But I'm almost 100% that it will! I just need to find it!
B12 deficiency was the trigger to my CD diagnosis. Strangely depite a GF diet I still have low B12 so need injections. I would agree with the comments above that tablets will not necessarily improve your B12 levels and injections would be a better alternative.
You may already be aware that B12 deficiency can manifest neurological problems including anxiety and depression. If you google neurological side effects of B12 deficiency you'll find lots of contributors including Harvard university.
I suspect your GP is judging you on your presentation of your condition. If you're able stay calm and plan what you what to achieve and how to go about it before your go, I believe you'll stand a better chance of getting what you want. Take copies of any credible relevant evidence and then put the onus on the GP to demonstrate why your condition is different. If they can't then they should agree to at least a trial of say a set of four injections which would give you a year to assess effects.
Taking the drugs could well make the problem worse for you - the ones for Acid Reflux. This condition is often caused by LOW acid and not high. As a result the food stays in the stomach too long - especially proteins - they need good acid levels to break them so they can pass safely into the duodenum. When food hangs around in the stomach for too long - it begins to ferment and causes the reflux. The drugs also suppress the intrinsic factor which binds to B12 molecules and safely transports them all the way through the gut to the Terminal Ileum - where it is absorbed.
I would very much like to see your Thyroid test results - as this condition and many of the others you mention can be caused by LOW thyroid hormones. You probably only had the TSH tested and it may well have been in range - which does not mean satisfactory or normal. TSH over 2.5 indicates Hypothyroidism. It is your right to have your results - they after all your results of your blood. If asked say you are keen to monitor your progress and take control of your health. Take a look at the website of Thyroid UK and look at the list of Signs and Symptoms - you may be surprised.... You also need the results of your B12 Test - and post with ranges.
Hi guys thanks for all the info. Yes I have looked at all the info on thyroid symptoms and I know all about the consequences of being on acid suppressants for a long time. I try to get as much info as possible before I goto my GP unfortunately whenever i bring any of this up with doctors all i ever get told is I'm worrying about nothing as all blood tests I've ever had have come back from lab within normal range. Now I know that's not necessarily good enough but it is for them n when I ask for anything I get a blunt no and get told its my anxiety showing up. Even when I question the symptoms and not the results I get told its anxiety. I'm banging my head against a brick wall here and have been for years. I've tried different doctors and even different surgeries but always end up in same position, they try standard tests get same results and refuse to done anymore. I asked receptionist at surgery for the numbers regarding my latest batch of tests and she said that was something I'd have to take up with GP. Yet Again im stuck. Don't know what to do. I have all symptoms of Armenia and vitb12 deficiency with probable malobsorption caused by maybe pernicious Armenia or atrophic gastritis but no one will listen.
You could lower the PPI's slowly and introduce Betaine HCL. Am afraid it is a case of taking control of your own health and self-treating.
Can you see someone privately ? On Thyroid UK you can obtain a list of Docs who will look at the whole body and not just treat the various symptoms. It is important to look for the underlying cause of chronic illness. You can take a look at my profile to give you some of idea of the battles fought and now almost won. Always new things to learn....
I live in a small town and have been told (when she admitted she shouldn't of said anything) by my podiatrist that no one is allowed to refer anyone for specialist treatment at the moment due to a lack of money/funding. I'm starting to get the feeling the reason I'm getting fobbed off every time I try and get answers n ask for tests or treatment is because of this and they are hiding it and telling me to go away by saying it's nothing to worry about. I even got told by ones GPS to learn to live with it. I cant move to another surgery as there none left to move to.
It seems to me that you have been doing everything that you can.
Have you heard of PALS (the Patient Liaison Service)? It might be worth seeing if you have one in your area. They are an advocacy service for people in similar situations to yourself; and sometimes they are good at breaking the stalemate.
When I have supported clients in the past, I've had some good results from using them. It's worth knowing that often they are only a small team - so results might take a week or two (but better that, than where you're at now - right?).
Your GPs surgery might have a leaflet about them, if not ask at your local hospital or look online.
Reading your post made my relive all I went through, I have numerous Auto Immune Complaints, and like most on here was tested for CD but due to misinformation prior to test came back Negative, I felt so much better on GF I could not stomach the idea of going back on it for 6 wks., to redo the test. I was still having stomach and bowel trouble, was given the usual PPI's and other ant-acid treatments. Had al the symptoms you listed, along with pins and needles in feet and hands, cramps etc.; the Rheumatologist sent for a blood test, did not know what for. Then get a phone call to say you have PA and will need injections for life, levels of B12 were 163. So had Loading doses every other day for 2 wks., now on injections every 8 wks., following the Nice Guidelines for treatment with Neuro involvement.
PA, is B12 deficiency with Malabsorbtion due to no Intrinsic Factor, so taking Vitamin Pills will do no good, you can get a spray which go's under your tongue as a booster, But you do need to get a B12 test!! You can go to the PA Support site which will advise on all the guidelines and symptoms etc., but do get it sorted please, the injections sre not a miracle cure they will need to build up before you feel any benefit. There is also a site New Beginnings for PA suffers, has lots of templates to help with your GP to get you tested.
It took a few months of going gluten free before I noticed a real difference to my symptoms. After about 4 months of being strictly gf I started to notice that my nails weren't breaking anymore (I now have to cut them as they get too long and are thick for the first time ever!) and cuts healed in a few days instead of weeks or months. I still get bad reflux with certain foods so I keep clear of those too. I have had every test going and still no answers! I think when you have been ill for so long your body needs lots of time to heal. I was ill for over 15 years and going gf was the best thing I have ever done! I hope you get sorted.
Oh and I also get quite anxious and this does cause problems too if I don't manage to control it. I also have peripheral neuropathy and after a year of being gf it has not changed. I will just have to get used to dropping things! Or better at catching!
The Dr's can't actually refuse to give you a print out of your blood results....just go to reception and give her the dates of your tests you want and ask for a print out, it is your information they can't say no..Can't think why the GP refused.
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