Hi there this is my first post which I'm writing following a visit to my GP. I have been suffering terrible symptoms for over 12 months too many to mention but includes muscle ache fatigue memory loss. GP carried out tests vit b12 222 folate 5.5 vit d 93. Would not consider symptoms may be related to deficiency as I'm 'in range'. Can I pay for blood test to check intrinsic factor etc. I had breast cancer two years ago and even stopped my letrozole thinking this was the cause of symptoms. Discussed this with my Oncologist yesterday to ask for further tests but still he says b12 in range so no problem.
Any advice please as I want the problem to go away and could start vitamins but reluctant until further tests carried out which no one will consider.
Written by
Tractorgirl53
To view profiles and participate in discussions please or .
Hi Tractorgirl53 how long ago was it that you stopped taking the Letrozole as some of its side effects are similar to those of a B12/Folate deficiency.
Can you quote the ranges <from - to> and the units used for your B12 and Folate?
I am not a medically trained person but there are others on here who will be able to give you good advice.
Thanks for the response I'm picking up the copy of the full blood test results from GP Surgery. I stopped Letrozole 8 months ago. Range was vit b 211-911 Folate 5.4-24 vit d 75-250
You are certainly bumping along the bottom of the ranges for B12 and Folate and the British Society for Haematology guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Make a list of your neurological symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
An Intrinsic Factor Antibodies (IFA) test should be available on the NHS. The IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
If you had nitrous oxide during surgery it is a super-oxidiser when it comes to B12 and converts it to a form that the body cannot use, so if you had an absorption problem and couldn't replace your the oxidised B12 with new B12 then it would be a permanent problem.
I hope your breast cancer is in remission now. My wife had hers just over ten years ago and she is fine now..
Many thanks clivealive I had 4 operations with general anaesthetic in the space of 12 months. My partner is taking me back to GP Monday with NICE guidance etc and symptoms. I've also had hpylori on and off for over twenty years. Breast cancer in remission thank you all the best for your wife also kind regards
Hi there went to see GP who listened to all symptoms and checked previous b12 4 years ago which was similar level. Still insisted not b12 but is referring to rhumatologist and gastroenterologist but not haematologist.
I shall go from there as its the best I'm going to get at present perhaps they will refer me.
Just thought I'd share my experience. Have many symptoms of pa, have family history of pa. Have underactive thyroid (autoimmune). Last blood tests came back normal range for B12 and normal for everything else but showed antibodies for B12. Made another appointment with my doctor and went in armed for battle with lots of facts. He has agreed to a loading dose of B12 (5 injections over the next 2 weeks) and then to review in 3 months to see if they has been any improvement in my symptoms. All I want to say is don't give up, keep on bothering your doctor - you know your own body best!
CD72 many thanks for the reply I'm going back tomorrow wish me luck. My previous gp misdiagnosed my gallstones as ibs as the pain didn't fit what it said on the computer and I had no chance of getting breast cancer although my twin sister had it wrong I got breast cancer fortunately I disagreed with them and asked for genetic opinion which confirmed high risk and diagnosis 12 months later. Even so I feel like a child going into the lions cave and being labelled the difficult patient. You are so right you know you're own body and wish they would treat people as individuals and not what the computer says
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
NHS Patient Rights
B12 deficiency but doctor now suggests it's Parkinsons because symptoms are no better in a year.
Neurological question re B12 treatment
Advice moving forward?
Self-treating with methylcobalamin
