Fatigue without anaemia?: Hello, first... - Pernicious Anaemi...

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Fatigue without anaemia?

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Hello, first time posting here

Sorry if this has been asked before or the answer is in an obvious place: Can you have fatigue caused by lowish b12 without being anaemic? My total b12 came in at 341, I know this could be lower but I have been experiencing heavy fatigue and tiredness, depression, pins and needles, disorientation, low libido etc. I had also been taking 2mg hydroxo sublinguals in the build up to the test, bit silly, but I think that might have raised the result. FBC was good other than slightly low (in normal) white blood cells.

Folate is 19.4nmol/l low in the normal range.

Ferritin 117ug/l also low in the normal, do these need addressing?

Thyroid function is pretty bang on, no antibodies.

GP won't do anything obviously, but I can consider going to a private clinic for injections if needs be.

Thank you!

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Gambit62 profile image
Gambit62Administrator

B12 is used by a number of systems at the cell level - which means anaemia (effect of lack of B12 on the production of red blood cells in bone marrow) is not the only way that B12 can cause fatigue and tiredness, eg it also plays a role in the process that allows your cells to release energy by converting ATP to ADP.

in reply toGambit62

Thank you Gambit!

cquadros profile image
cquadros in reply to

As a doctor, I can not find a satisfactory answer for the weakness, muscle fatigue and shortness of breath I feel, even replacing hydrocobalamin every other day for the last 9 months ...

I have no anaemia, my levels of folate, potassium, copper, ferritin, etc. are all normal and the symptoms persist ... As Gambit said, once you become deficient in B12 for a long time, there are probably more metabolic problems involved in this complex process.

in reply tocquadros

I'm sorry you haven't found out what's causing the problems, I hope you manage to soon

topazrat profile image
topazrat

I wasn't anaemic at diagnosis, but I was still exhausted to the core.

in reply totopazrat

Sorry to hear that topaz, were you treated with b12? Did the exhaustion go away?

topazrat profile image
topazrat in reply to

I self inject weekly between my 12 week NHS jabs. The tiredness is still there, but not as bad. It got better when a vitamin D deficiency was found, but still didn't go completely. I'm having investigations to see if anything else is going on that would cause the ongoing tiredness at the moment.

in reply totopazrat

Might be worth mentioning that although I still have problems, presumably due to b12, I found massive relief in my tiredness after I started taking CBD oil. It didn't give me more energy directly but definitely changed my quality of sleep.

topazrat profile image
topazrat in reply to

Wow CBD oil is expensive, I've just had a google! I'm glad its giving you relief though.

in reply totopazrat

Very much so unfortunately. Worth reading into though!

topazrat profile image
topazrat in reply to

I'm reading up right now. :)

Sleepybunny profile image
Sleepybunny

Hi,

I am not medically trained.

Links that may be of interest

1) Misconceptions about B12 deficiency

stichtingb12tekort.nl/weten...

2) Summary of B12 documents in third pinned post on this forum mentions anaemia not always present.

3) Think B12 books below mention anaemia not always present

"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.

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

Are you in UK?

UK B12 guidelines suggest people who are symptomatic for B12 deficiency should be treated even if B12 is within range.

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

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Link about What to Do Next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

in reply toSleepybunny

This is incredible Sleepybunny, thank you so much. Going to arm myself to the teeth for my GP appointment!

Sleepybunny profile image
Sleepybunny

Hi again,

"GP won't do anything"

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

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.

hdapatientcaretrust.com/

"been taking 2mg hydroxo sublinguals in the build up to the test....think that might have raised the result"

It may have raised results.

Do you have any other B12 results from last few years to compare recent result to? If your B12 results have been declining over a period of time, that could be significant.

How long were you taking sub-linguals for? This link suggests that supplementing with b12 before diagnostic tests for b12 deficiency can make it very difficult to get a diagnosis.

b12deficiency.info/b12-test...

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

"Going to arm myself .... for my GP appointment!"

I gave my GPs the following

1) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

2) Copy of BSH Cobalamin and Folate Guidelines

3) Copy of PAS Symptoms Checklist with all my symptoms ticked plus I added any not on list

Some GPs find it difficult to cope with assertive patients so it's possible doctor/patient relationship may be affected. I prefer to put info I want GP to read in a brief, polite letter. My understanding is that in UK, letters to GPs are filed with a patient's medical notes. See letter writing link at top of this post.

Do you have anyone supportive who can go with you?

If you suspect PA (Pernicious Anaemia) is a possibility, may be worth joining and talking to PAS before next appt. There are PAS support groups in UK.

pernicious-anaemia-society....

Pins and needles is normally considered to be a neuro symptom. Do you have other neuro symptoms?

NICE CKS link and BSH Cobalamin and Folate Guidelines link in my post above suggests that GPs should seek advice from a haematologist for people who are symptomatic for B12 deficiency with neuro symptoms.

Have you been referred to a neurologist?

Have you ever been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

More B12 info in pinned posts on this forum.

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