So I went in armed with guidance and my mum and the outcome was
1. Have you considered whether you have a mental health condition
2. Have you considered chronic fatigue
3. The blood tests show you don't have a B12 deficiency now
4. You need a second opinion, referral to gastro specialist
I'm not sure whether this is positive?
Hi,
I would say that a referral to a gastro specialist was a positive outcome. An endoscopy might pick up damage to gut from Coeliac disease, PA , H Pylori infection, other causes.
"Have you considered chronic fatigue?"
I suspect that although ME/CFS is a genuine neurological condition, ME/CFS is sometimes given as a label to patients suffering long term fatigue when doctors feel they have carried out enough tests.
ME/CFS and B12 deficiency
b12deficiency.info/misdiagn...
martynhooper.com/2018/02/10...
martynhooper.com/2015/08/04...
b12deficiency.info/blog/201...
meassociation.org.uk/2018/0...
"Have you considered whether you have a mental health condition"
It's vital to get help for a mental health condition but I'm a bit cynical about this. In UK, my understanding is that GPs get more funding for people with a diagnosis of depression. (Please correct me if I'm wrong about this). In some parts of UK, ME/CFS seems to be seen as a mental health condition although WHO (World Health Organisation) classify it as a neurological condition.
I cynically wonder if it's easier to slap a label of depression on people rather than continue to search for physical causes. I think sometimes GPs find it difficult to deal with patients who don't fit into a neat diagnosis box.
B12 deficiency can lead to severe mental health symptoms.
b12deficiency.info/b12-and-...
pernicious-anaemia-society....
martynhooper.com/2017/01/22...
b12deficiency.info/blog/201...
stichtingb12tekort.nl/weten...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
Lots of potentially useful info in link below.
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Have you considered joining and talking to PAS?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Some UK forum members have had help from B12d.org
"The blood tests show you don't have a B12 deficiency now "
BSH Cobalamin and Folate Guidelines make it clear that testing B12 levels after treatment has started is irrelevant.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I am not medically trained.
Hi Sleepybunny
I've had 2 endoscopies over my lifetime, one at 25 and the second at 35. Both results just showed inflamed stomach lining
I get the feeling I'm just going to have to fight the specialists now
Ask the gastroenterologist to look for Metaplastic Gastric Atrophy. Biopsy samples would show the metaplasia. That’s a darn good indicator for PA.
Hi Nicoleflower81
I had similar 3yrs ago, I was told I probably had fibromyalgia and they thought I was depressed.
I had b12 serum test done after years of symptoms result 139, I was given daily then weekly loading doses of b12 then one a month, I was then told I was ok now so would not need anymore injections.
Within weeks my chronic fatigue and other symptoms were much worse so I returned to GP, another b12 serum was done but there was a minimum gap for retesting (sorry can’t remember if it was 28days or not) my test was rejected by the lab as too soon then redone after the correct gap . By then it had dropped from 1500 to 201, when I phoned for result I was told by a receptionist that my result was ok and I no longer had a b12 deficiency, I asked for the figure as luckily id read on here that I should (It’s a good thing I did) I told the receptionist such a huge drop in a short space of time was not ok so I needed to see a GP, this was when GP decided to do an intrinsic factor test which was positive. I’ve had monthly injections ever since.
I’ve recently been seen by gastro team referred for endoscopy which revealed grade b oesophagitis and multiple ulcers that I wasn’t aware of so hopefully your gastro referral will give you some answers and I wish I’d pushed for it years ago now.
I’m due back for another endoscopy and to see consultant with results. I’m hoping then I’ll get to ask about autoimmune gastritis.
It is frustrating trying to get the help and treatment you need and I’ve found this site invaluable. Good luck. 👍
Hi,
Just a short note as this is someone else's thread Sleepyfromwales .
Have you ever been tested for H pylori infection?
patient.info/health/dyspeps...
PAS (Pernicious Anaemia Society) is based in Wales.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Hi Sleepbunny
Thanks for that, I was tested 3 yrs ago and again at my endoscopy both H Pylori negative.
I’ve been given omeprazole for 8wks then repeat endoscopy to check for improvement. Not sure omeprazole will work on me as I not sure I have stomach acid to inhibit. ☹️
Thanks for the links. 🙂👍
Vit b 12 deficient even though GP says no?
Research of treatment of B12
Differing medical opinions? Hoping that this is positive outcome!
