B12 and folate: Hi I am new. Endo has... - Pernicious Anaemi...

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B12 and folate

Tara_L profile image
21 Replies

Hi I am new. Endo has asked GP for me to undergo psychological assessment. Symptoms are early morning constipation, aching in joints, dry skin, heavy periods, feeling cold, tiredness, weight gain, twitching in muscles.

Thankyou

Folate 2.2 (2.5 - 19.5)

Vitamin B12 185 (180 - 900)

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Tara_L profile image
Tara_L
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21 Replies
Sleepybunny profile image
Sleepybunny

Hi Tara-L

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

Your folate is below range. Are you receiving treatment? Your B12 is at bottom of normal range. It's possible to have severe b12 deficiency with results that are normal range.

I do note that you have posted on Thyroid UK forum. Symptoms of thyroid disease and B12 deficiency can overlap.

Are you symptomatic for B12 deficiency?

Symptoms lists for B12 deficiency

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

Having a blood relative with PA (pernicious Anaemia) or other auto-immune diseases can increase the chances of developing PA.

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you had tests for Coeliac disease?

Coeliac disease can lead to low B12 as it can affect teh gut and cause absorption problems.

It is possible to test negative on Coeliac antibody test (tissue tranglutaminase antibody) and still have Coeliac disease. People who are IgA ( an immunoglobulin) deficient will not make tissue tranglutaminase antibodies and may need an alternative test for Coeliac disease.

coeliac.org.uk/coeliac-dise...

NICE guidelines Coeliac disease

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

What thyroid tests have you had?

UK B12 documents.

1) BSH Cobalamin and Folate Guidelines

I'd recommend reading whole document if you're in UK. I gave a copy to my GPs.

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises that people who are symptomatic for B12 deficiency should be treated in order to prevent neurological damage even if B12 is within normal range.

I was very symptomatic for B12 deficiency with B12 results mainly within 300 to 400 range.

3) BNF British National Formulary Chapter 9 Section 1.2

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

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this to my GPs.

"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 book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

If you suspect PA is a possibility or have a diagnosis of PA, it may be worth joining PAS. Costs £20 for a year's membership. PAS can offer support and info and in some cases can intervene on behalf of members.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

B12 blogs

May be relevant stories on Martyn hooper's blog about PA and B12 issues.

martynhooper.com/

There is also an interesting blog on "B12 deficiency info" website.

b12deficiency.info/

Unhappy with treatment (UK info)?

Link about writing letters to GP about b12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms

Point 5 is about being symptomatic with an in range b12 result

CAB

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment.

More B12 info in pinned posts on this forum. I found fbirder 's summary of B12 documents useful to read. Link to summary in third pinned post.

Do you get copies of all blood test results? In relation to B12, I look at B12, folate, ferritin and full blood count (FBC).

Links about blood tests

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Link about what to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

Endo has asked GP for me to undergo psychological assessment

B12 deficiency can have a big impact on mental health

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

Do you have someone supportive to take with you to appts , even better if they know about B12, folate etc and are willing to speak up on your behalf.

My personal opinion is that too many on this forum get labelled with depression, ME/CFS, psychosomatic symptoms, hypochondria when actually suffering from B12 deficiency.

Misdiagnosis of B12 Deficiency

b12deficiency.info/misdiagn...

I am not medically trained just someone who has struggled to get a diagnosis.

Tara_L profile image
Tara_L in reply toSleepybunny

Thankyou I am in uk and symptomatic for B12 deficiency.

Tara_L profile image
Tara_L in reply toSleepybunny

Taking folic acid once a day

Sleepybunny profile image
Sleepybunny in reply toTara_L

clivealive might be able to comment on folate treatment.

What strength tablet of folic acid are you taking?

I have read that it is very important to treat any co-existing B12 deficiency if on folate treatment. See management section of this link.

patient.info/doctor/folate-...

Tara_L profile image
Tara_L in reply toSleepybunny

5mg folic acid

Tara_L profile image
Tara_L in reply toSleepybunny

Ferritin 49 (30 - 400)

Iron 9.6 (6 - 26)

Transferrin 15 (12 - 45)

Tara_L profile image
Tara_L in reply toSleepybunny

MCV 76.2 (80 - 100)

MCHC 381 (310 - 350)

MCH 27.1 (27 - 32)

Haemoglobin 114 (115 - 150)

RBC 4.32 (3.8 - 5.8)

WBC 7.11 (4 - 11)

Haematocrit 0.40 (0.37 - 0.47)

Sleepybunny profile image
Sleepybunny

Hi,

Some of your results seem suggestive of possible iron deficiency eg

MCV 76.2 (80 - 100)

MCH 27.1 (27 - 32)

Haemoglobin 114 (115 - 150)

but I'm not a doctor and your ferritin result seemed okay.

Have you seen a haematologist?

A neurologist if you have neuro symptoms?

I wondered if iron deficiency is masking the effects of low b12, low folate on red blood cells. See link about macrocytosis in post above. low iron can lead to small red blood cells (microcytosis) and low b12, low folate can lead to enlarged red blood cells (macrocytosis)

link about iron studies tests

labtestsonline.org.uk/under...

Do you have a result for RDW, red blood cell distribution width.

This would be on full blood count (FBC) tests. See link about full blood count below.

An increased RDW indicates the possibility of blood sample having a greater range than normal in size of red blood cells. Increased RDW might occur in someone with both low iron and low B12/low folate.

labtestsonline.org.uk/under...

Has GP ordered a blood smear, also known as blood film. This might show up both macrocytic and microcytic red blood cells in someone with both low iron and low B12/low folate.

labtestsonline.org.uk/under...

Tara_L profile image
Tara_L in reply toSleepybunny

Thankyou I was under a haematologist who wants my ferritin above 50 before another infusion is due. RDW never tested. No referral to neurologist. Been given antidepressants instead. No blood smear either.

Gambit62 profile image
Gambit62Administrator

Tara_L - curious about the 'psychological assessment - as all of the symptoms you mention are physical - is that a typo?

unfortunately there is so much overlap between conditions that its difficult to say for sure if the symptoms you mention are down to B12, folate, iron or something else - the heavy periods are most likely to be the iron deficiency.

your B12 may be just in range but low folate and low iron suggest absorption problems so likely that you are B12 deficient as well.

Please see my responses on this post in relation to trying to get your GP to recognise the limitations of the serum B12 test and the probability that you are B12 deficient.

healthunlocked.com/pasoc/po...

Tara_L profile image
Tara_L in reply toGambit62

Thankyou not a typo

Gambit62 profile image
Gambit62Administrator in reply toTara_L

sorry that they are doing this to you - particularly as one of the sympotms of B12 deficiency is depression and anxiety but they'd rather ignore the fact that deficiency and depression are actually blanket terms for a bunch of symptoms that could have a number of causes.

Pingo profile image
Pingo

You sound like a textbook case of low thyroid to me. Despite being just ever so slightly below normal range I've been exhausted, brain fogged, etc for 9 months. I'm SI b12, and my GP has recently started me on thyroxine --- thyroxine has felt like a miracle -- and I don't have the perfect checklist of typical symptoms you do. Look up hashimoto's disease symptoms and take your doctor the list. Good luck.

Tara_L profile image
Tara_L in reply toPingo

Thankyou I have Hashimotos

Pingo profile image
Pingo in reply toTara_L

And are you on thyroxine? Has it not helped your symptoms? Why are they asking for a psych assessment based on those symptoms?

Tara_L profile image
Tara_L in reply toPingo

Taking 100mcg levo from 200mcg levo and 12.5mcg T3

Thankyou

TSH 5.60 (0.2 - 4.2)

Free T4 17.3 (12 - 22)

Free T3 3.8 (3.1 - 6.8)

TPO antibody 375 (<34)

TG antibody 286.3 (<115)

Results show undermedictation and they are asking me for a psych asessment because the GP has been saying my symptoms are not physical.

Pingo profile image
Pingo in reply toTara_L

I think there comes a time to tell a GP to **** *** and get another one. At the same practice or a different one -- I know it's harder outside London -- our surgery is huge and you have to work hard to get the same GP twice in a row at the best of times. I can't judge your blood results as I know nothing about them, but if you're being undermedicated and told it's all in your head, you need a new doctor. This might help as well: which.co.uk/consumer-rights...

Admin: Edited to remove swearing

Pingo profile image
Pingo in reply toPingo

Sorry about my language but the way you're being treated is outrageous.

Pingo profile image
Pingo

Ps I got so sick of doctors asking me if I was depressed. I found it was simplest to say an emphatic NO. Frustrated? Yes. Impatient? Yes. Fed up? Yes. Desperate for effective treatment? Yes.

But NOT DEPRESSED.

Frodo profile image
Frodo

I would query the recommendation in writing and speak to the GP or the endocrinologist about why they are taking this line.

If you do go down that route, I suggest taking someone with you to the appointment, and taking evidence/records of physical symptoms, blood test results etc.

Once your physical symptoms have been put down to mental health issues it will be extremely difficult to get appropriate treatment in the present and in the future.

MariLiz profile image
MariLiz

Why oh why are doctors more than happy to treat us for depression, rather than treat the B12 deficiency that is making us feel so low?? I said to my GP that what was making me feel low, was feeling so ill!

I do hope you will get your B12 treated!

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