Diagnosed with hypothyroidism in April and my B12 has been going lower on each blood test despite no change in diet, I’m wondering if anyone else has experienced this? I’ve asked for an B12 injection to see if it makes me feel better as still feel really rubbish but my doctor is hesitant and has referred me to haematology but it’s an 18 week wait. Does anyone have any advise? Or shared experience? Results as follows:
April 358 (200-700)
June 258 (200-700)
July 231 (200-700)
Any help hugely appreciated x
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ML44
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They often go together. I wouldn't let the levels go much lower as you will probably get many more symptoms. Get your folate done and intrinsic factor bloods done before any b12 treatment. Try and eat liver ect. You may get some benefit.
I’ve realised I should have had the injection. I’d requested one and the surgery said they would double check with my GP. My surgery called me on Monday to say the dr agreed and I should to make an appointment for the injection but I lost signal. (My DR had initially said wait for the injection to see the hemo thinking it would be a few weeks but I requested to have it before when I was told it would take 18 weeks) When I called back I got someone else who read my notes and said my notes said I needed a blood test, brain fog stopped me from realising at the time that the blood test had been put on for me to see the Endo in August so I could go with fresh results. I did ask had they checked this with the Gp on the 2nd phone call and they said it was in my notes for the test so they had to do that first. Anyway, My Gp will be seeing the test results tomorrow and I should then, if my theory is correct! Get the injection! Fingers crossed it helps and thank you for your replies x
I had folate and If done last month and they were in range x
You mention having an Intrinsic Factor Antibody test.
Have you also been tested for
1) Coeliac disease?
UK guidelines suggest anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease. Make sure they do both recommended tests below...UK GPs sometimes forget to do second test Total IgA.
a) tTG IgA test
b) Total IgA test
TTG IgA test checks for a particular antibody to gluten.
Total IgA checks which patients have IgA deficiency.
Patients with IgA deficiency cannot make the antibodies to gluten that tTG IgA test checks for so they will need alternative tests for Coeliac.
If you have already been tested for Coeliac and got negative results, did GP
a) test Total IgA to see if you were IgA deficient
b) tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken for tests.
c) order alternative tests for Coeliac disease if you are IgA deficient?
One reason for negative results in a person with Coeliac disease is that they weren't eating enough gluten before blood was tested therefore not enough antibodies to gluten were circulating in the blood to register a positive result.
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish? One potential sign of fish tapeworm infection is a rise in eosinophils (type of white blood cell WBC). Eosinophil result can be found on Full Blood Count ( known as Complete Blood Count in US) results
"Results as follows:
April 358 (200-700)
June 258 (200-700)
July 231 (200-700)"
I had severe B12 deficiency with multiple neurological symptoms with most B12 results between 300 - 500 ng/L, well within normal range. It took me many years to get treatment and I feel very lucky to have escaped dementia and spinal damage.
"had folate and If done last month and they were in range"
Have you seen the actual results or were you just told they were in range?
I learnt to always get copies of blood results after being told everything was normal and then finding abnormal and borderline results on copies. These days I don't trust what I am told about blood results unless I have a copy in my hands....
You mention folate and IF, have you got recent results for full blood count FBC and ferritin (or other iron tests)?
Do you have any neurological symptoms eg tingling, pins and needles, numbness, tinnitus, memory problems, balance issues, vertigo, migraine, limb weakness, restless legs syndrome, word finding difficulties etc?
In UK, people with b12 deficiency with neuro symptoms are supposed to get more intensive treatment than those without neuro symptoms. See BSH, BNF and NICE CKS links for more info on UK B12 treatment.
"I’ve asked for an B12 injection .....but my doctor is hesitant and has referred me to haematology"
Glad to hear that you have been referred to haematology. See NICE CKS link if in UK.
Be warned that B12 deficiency is not always as well understood as it could be among doctors so I suggest doing some B12 homework before appointment in case GP has not done theirs. I was saddened by the level of ignorance among the specialist doctors I saw.
Other referrals
1) Neurologist
Has GP referred you to a neurologist if neuro symptoms present?
2) Gastro enterologist
Have you been referred to a gastro specialist if gut symptoms present? Hopefully they would spot signs of gut damage from PA, Coeliac, H Pylori and other conditions that affect the gut.
I used to request referrals in brief, polite letters to GP along with evidence eg symptoms, medical history, test results, extracts from UK documents that supported request.
"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 does not show updated BNF info.
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I am not medically trained. More B12 info in pinned posts on forum.
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