HI, I recently went to the doctor about something unrelated, and whilst there I mentioned that I felt tired all of the time, didn't really have the motivation or energy to do anything a lot of the time, very occasionally felt light headed and was struggling with my concentration/thinking/remembering to do things at work which is not at all like me and was feeling down a lot.
Doctor said best place to start was with a bit of a general heath check blood test and to go from there. I had my test and my Serum B12 came back at 160ng/L and my Folate was 2.9ng/L. My doctor has just advised me to take an A-Z multi-vitamin and eat more animal products, even though I already have a healthy diet and eat animal products daily. Then to retest in sometime after at least 3 months.
I'm not a doctor but my levels are a lot lower than a lot of peoples from posts I've read online and yet they are being offered B12 injections etc. There are also sites that class my levels as 'Severe deficiency' or 'clinically significant'.
Given that I'm symptomatic and have low levels do you think my GP's advice is sound or do you think I should get a second opinion? I do trust my GP and am not questioning their knowledge or competence at all, but I'm keen to learn how others have been treated with similar levels? Is this normal practice?
Thanks.
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iStevie
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Given that I'm symptomatic and have low levels do you think my GP's advice is sound
No, it is not sound. Guidelines are to treat the symptoms, not the numbers. Also, your GP should be curious as to why your levels are so low. Rather than assuming, in spite of the evidence against, that it's a problem with diet they should be looking for a more likely reason. In the meantime you should be getting injections.
I suggest reading through the pinned posts. Print out my summary document (in the third pinned post). It contains links to some expert documents and extracts of the important bits.
I do trust my GP and am not questioning their knowledge or competence at all
I would start out by questioning their knowledge. Most doctors cover B12 and all its workings, along with other vitamin deficiencies on one Wednesday afternoon. So they can't really be blamed for not knowing it all. Their competence can be judged on how willing they are to learn. I gave my GP the BMJ document linked to in my summary then a copy of Martyn Hooper's book. Now he knows more than most.
Thanks for your reply, makes me feel more confident about taking control and talking to my GP about what I think they should be doing (aided with the material you've directed me to which I really appreciate!).
I have a family member who had B12 levels in the 400's and were started on B12 injections at a different practice - it's baffling how individual practice policies differ so much.
I found a link to my local PCT's policy/guidelines which it appears my GP has not followed. It said "If the B12 is between 150 and 180 pg/ml, a therapeutic trial should be given. If there is a clinical response then a diagnosis of B12 deficiency is made and the appropriateness of further investigation as to cause should be determined." - It also said GP's are not allowed to repeat the test within 3 months as the lab will refuse!!
Hi iStevie I'm not medically trained either but your doctor is right about your diet needing to include animal products as that is the only "natural" way of getting B12 from food in the same way that Folate is derived from leafy green vegetables etc.
So why are your levels so low? Have a look at the list below and see if you can "see yourself"...
Who’s at greatest risk for B12 Deficiency?
"Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.
"
Once you have identified the possible cause for you B12 Deficiency list your symptoms and go back to your doctor for the appropriate treatment.
Do you know what your Vitamin D level is? That too is mostly derived from animal products (apart from a bit of sunshine) so if your B12 deficiency is due to not eating enough meat etc maybe you'll be low on D too.
Thanks for the reply and for the list of possible causes - I hadn't really given that much thought before so appreciate the insight.
I really don't think it is diet related as I eat meat daily, have eggs one or twice a week, have milk daily with breakfast (which I learned after was fortified) also in tea/coffee throughout the day. I do get folic acid in my diet although granted I could probably use more!
None of the items in your list really apply to me though. Save for the family history side of it which I only have 50%. Out of that list autoimmune is the most likely, although I have no diagnosis of having such, as my inflammation markers were abnormal in my blood test which the doctor hasn't got a plan for yet other than possibly to retest at some point. I know that can be a marker for some form of autoimmune disease so I definitely need to ask my GP about that at my next appointment.
A few years ago, I was under 2 hospitals in different health authorities. The big teaching hospital asked my GP to treat my B12d (then at 170) however she did nothing but monitor it for 2 years until it fell to 108 (range 120+). Generally she's a very good GP so my interpretation is that they are advised not to treat until one falls 'below range'.
Hi Clareb67. Good grief...if this is what doctors are advised to do, it's wrong. And not in line with current guidelines, if a patient is symptomatic.
The consequences of not treating until levels are below range can expose patients to potentially irreversible neurological damage.
I'm appalled 😱😱
Hope you're getting appropriate treatment now - check out the PAS pinned posts for information about diagnostic and treatment protocols, together with appropriate guidelines.
Lots of people here to support and advise if you're not sure you are getting the right treatment or need help in getting your GP to provide this.
"I found a link to my local PCT's policy/guidelines"
My experience is that sometimes these local NHS B12 guidelines are followed rigidly. I was told that the NHS shoudl be following the BCSH Cobalamin and Folate guidelines
BCSH Cobalamin and Folate Guidelines
About three quarters through the BCSH document is a flowchart that outlines the process UK doctors should follow with someone who has low B12 or is symptomatic for b12 deficiency.
It includes when to order an IFA (intrinsic factor antibody) test which can help to daignose PA. Have you had an IFA test? The test is not always reliable as its still possible to have PA even if test result is negative. The BCSH Cobalamin guidelines mention "Antibody negative PA". A quarter through document are details of UK b12 treatment.
I gave a copy to GPs along with a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
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