Advice of lab results please

[Lisa_middle_earth]

healthunlocked.com/thyroidu...

Thanks for your time x

[clivealive Forum Support]

Hi Lisa_middle_earth in addition to what Marz has written you were also Folate deficient.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Having IBS and thyroid problems may put you at an elevated risk of developing a Vitamin B12 deficiency.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Sleepybunny]

Hi,

B12 304 (Range 191-663) Were the units pmol/L or ng/L? Range looks unusual to me. In my area the range is 180 - 1000 ng/L.

It's possible to be symptomatic for B12 deficiency with an in range B12 result.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

In UK, emphasis in guidelines is on treating people who are symptomatic for B12 deficiency even if B12 result is within range.

UK B12 documents

I'd suggest reading all of these if you're UK based.

BSH Cobalamin and Folate Guidelines

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.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

More B12 info in pinned posts on this forum.

Your MCHC result is below range.

What has GP said about this?

One potential cause of low MCHC is anaemia. Your ferritin levels were mid range. Have you ever had a set of iron studies tests?

labtestsonline.org.uk/tests...

What has your GP said about low folate?

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-...

I have read that it is important to make sure any co-existing B12 deficiency is treated if a person is on folate treatment. See Management section in above link for more info.

Coeliac disease

NICE guidelines Coeliac Disease recommend that anyone with unexplained b12, folate or iron deficiencies should be tested for Coeliac disease. Have you been tested?

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood tests

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

You mention that you have an auto-immune thyroid problems. Having an auto-immune condition can increase chances of developing another auto-immune condition. Have you ever been tested for PA (Pernicious Anaemia)? If GP does not want to test you it's possible to get tests privately in UK.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"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.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in this link is about being symptomatic with an in range B12 result.

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/

Have you ever been referred to a neurologist?

I am not medically trained. I hope you find the help you need.

[Lisa_middle_earth in reply to Sleepybunny]

Thanks for your reply Sleepybunny 😊

Sorry, the B12 units were ng/L.

As for the MCHC results, my GP said there was nothing to worry about. The low folate resulted in a course of Folic Acid (5mg daily) which finishes in 2 days time.

I’ve never been tested for coeliac disease - when I asked I was told it was highly unlikely and wasn’t worth testing for! I’ve also never been tested for PA - I’ll look into private testing. I’ve only been referred to neurology for trigeminal neuralgia and that was over 10 years ago.

Thank you so much for your time and posting the links, I’ll have a look and digest the information 😊

[Sleepybunny in reply to Lisa_middle_earth]

Hi again,

It's possible to get private tests for Coeliac disease in UK.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

"the B12 units were ng/L"

I had typical symptoms of B12 deficiency including neuro symptoms with levels between 300 - 500 ng/L.

There is a window of opportunity to treat B12 deficiency before there is a risk of permanent neuro damage. See BMJ and BSH links in my post above.

PAS news item on neuro consequences of PA.

pernicious-anaemia-society....

If you think PA is a possibility then probably worth joining and talking to PAS (Pernicious Anaemia Society).

The flowchart link in post above outlines when PA and Antibody Negative PA can be diagnosed in UK. It mentions that if a person is symptomatic for B12 deficiency , they should have an Intrinsic Factor Antibody test whether B12 is within range or not.

On your Thyroid UK thread I think someone mentioned possibility of supplementing B12. Supplementing with b12 can lead to difficulties getting a diagnosis of B12 deficiency due to test results being influenced by supplements eg MMA, Homocysteine , Active B12 (Holotranscobalamin) tests. Have you had these tests?

I think it makes sense to have all diagnostic tests for B12 deficiency before considering taking supplements but it's an individual choice.

Intrinsic Factor Antibody test can give a false positive result if blood taken close to B12 injection or B12 supplements.

labtestsonline.org/tests/in...

You mention you are on folate treatment. The link in post above about folate deficiency mentions that treating folate deficiency without also treating any co-existing B12 deficiency may lead to neurological problems.

I think this may be due to folate supplements possibly masking the effects of b12 deficiency on red blood cells. See link about macrocytosis, full blood count, blood film.

Many on this forum have found that B12 deficiency is not as well-understood as it could be by GPs etc so I think it pays to be well prepared if B12 deficiency is being discussed.

Help for GPs

1) Section on PAS website for health professionals

pernicious-anaemia-society....

2) leaflet in PAS library section "An Update for Medical Professionals: Diagnosis and Treatment ", available to PAS members only.

3) I gave my GPs a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and B12 Deficiency"

Blog post about people seeking diagnosis of PA.

martynhooper.com/2017/06/24...

Good luck.