I am having terrible trouble getting to sleep, sometimes awake most of the night. Could this be down to b12 deficiency? I am shortly to see a neurologist re difficulty walking and balance problems but am wondering if the insomnia is related. Folate is 6.6 (3-20) and b12 408 (180-640). There could be another reason for the insomnia as I suffered a bereavement and now live alone and have always slept badly when only person in house but thinking back I was sometimes having difficulty sleeping from the beginning of covid when I was not alone but it is so much worse now. I am tempted to take some b12 but feel it might affect my chances of getting a true diagnosis. Only a couple of weeks to wait before appointment.
Insomnia : I am having terrible trouble... - Pernicious Anaemi...
Insomnia
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Trish
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Yes seems wise to wait.I was told a deficiency in magnesium can cause sleep problems.
You've had alot to deal with too 😔
Ask for a very thorough blood test .
Hopefully examination.
( although bizarrely rarely done)
Functional b12 deficiency
List worst 5 symptoms
Don't be rushed.
Hi Trish,
Insomnia can be a symptom of B12 deficiency.
Your B12 result is within the normal range but I know from personal experience that it is possible to have severe B12 deficiency symptoms with a normal range serum B12 result.
Some links I post may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about being under treated for B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with a normal range serum (total) B12 result.
If PA is a possibility, worth joining and talking to PAS.
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
Testing for PA
pernicious-anaemia-society....
I have also read that a pepsinogen test can helpful in diagnosis of PA.
UK guidance indicates that people who are symptomatic for B12 deficiency should be treated even if serum (total) b12 is within normal range.
If you have symptoms consistent with B12 deficiency with a normal range serum b12 result, has your GP considered the possibility of functional B12 deficiency?
See Point 5 in letter writing link above. MMA, Homocysteine and Active B12 (Holotranscobalamin) may be helpful in diagnosis of functional B12 deficiency.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
I'll add more to this post when I have time.
Risk Factors for PA and B12 Deficiencypernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Have you been tested for coeliac disease?
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested.
If you were tested in past and had a negative result, did your GP follow the recommended diagnostic procedure....some don't...
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
More on Coeliac UK website
As well as results for B12 and folate, do you have results for ferritin (or other iron tests) and Vitamin D? Forum members commonly report deficiencies in these.
I noticed you also post on Thyroid UK forum.
It's quite common for forum members here to also have thyroid issues.
Thanks for all the info. I am a bit of an internet search bunny and feel that some but not all of my symptoms indicate b12 problems. I will make a list of my symptoms but hope doc will at least be thinking on same lines. Being 75 and now a widow I want to be fit enough to care for myself and enjoy life as well.
Dr Google saved my life.....
Your GP may be reluctant to consider the possibility of B12 deficiency if your serum B12 levels are within normal range. See links to articles about Misconceptions in one of my replies.
Blog posts about people who were symptomatic for B12 deficiency with a normal range serum B12 result.
b12deficiency.info/your-ser...
I had to resort to treating myself and that was with 50 or more typical symptoms including dementia and spinal symptoms.
Specialists eg neurologists and haematologists can also lack understanding of B12 deficiency so be well prepared for any specialist appointments.
NICE guidance Suspected Neurological Conditions
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
UK B12 documents
NHS article about B12 deficiency and folate deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Includes the statement
" in the presence of discordance between the test result and strong clinical symptoms of deficiency, treatment should not be delayed in order to prevent neurological impairment"
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their serum B12 level is within range.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
CCGs (Clinical commissioning groups) were replaced by ICBs (Integrated Care Boards) on July 1st 2022. It's likely that ICBs will use the guidelines of the CCGs they replaced.
Each ICB/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area and comparing the info with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of ICB/CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or a copy of local B12 deficiency guidelines.
Read the blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.
b12deficiency.info/gloucest...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info is out of date in above book. See BNF hydroxocobalamin.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Films and videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
B12 deficiency is not always as well understood by some health professionals as it should be.
Some doctors have misconceptions (wrong ideas) about B12 deficiency.
Worth knowing some of the common wrong ideas in case you meet a doctor who has some.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
I am not medically trained.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
Regarding insomnia I found the approach from Daniel at the sleep coach school (linked below) to be excellent. I did have to turnaround a few nutrient issues also to get it mostly sorted but definitely was very useful to me as I had chronic insomnia for the first few months when I began B12 treatments. I still don't exactly sleep as well as I used to before treatment but quite well indeed compared to that time when I was averaging 1-2 hours a night for months.
Insomnia has been a problem for me that is slowly improving with B12 SI and folate supplementation.
I take magnesium glycante and it helps me sleep. I would also look into your diet, poor diet high in sugar and or caffeine can also play a role. As we age sleep also becomes more of an issue. B12 does play a role in sleep as well.
I am so very sorry for your loss.
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You have had great recommendations for the insomnia.
I sleep very well now since b12 treatment, did not previously - was always too wired, exhausted but wired.
Try these -
*One nostril only - do not switch like yogic breathing. Close your chosen nostril. Breathe in and out ten times. Apparently this balances the brain for sleep.
I never had to use these as the above was so efficient but -
*Fake yawns. Try to fake yawn five to ten times.
*There is a pressure point for sleep on the inside of your wrist - middle. Press on it for an extended time.
All three were from an osteopath.
Hope something works for you. All the best.
It can be a sign of too high cortisol which could be due to stress.
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