Pernicious Anaemia Society

Low Vit B12 completely disregarded

Hi

posted a few days ago about these results:

Serum free T3 4.6 (3.1 -6.8)

Serum free T4 31 (12.0 - 22.0)

TSH 0.014 (0.27 - 4.2)

Serum vitamin B12 level 198 ng/L [180.0 - 866.0]

Serum ferritin level 57.9 ug/L [13.0 - 150.0]

Serum folate level 9.8 ng/mL [3.9 - 26.8]Full blood count

FBC

Haemoglobin concentration 126 g/L [120.0 - 160.0]

Consultant Endocrinologist said B12 was "normal" and in range that he would not support any further investigation of it or offer replacement despite being symptomatic. He went on to a level of 50 being low and and in range result was of no concern to him. Referred to guidelines and he just shook his head a said No.

From the very beginning of the appointment it was clear that his stance was that I was over-medicated on levothyroxine and every symptom was attributable to that.

Considering a private Active Vit B12 test, a kit would be no problem..... where do you recommend.

And anyone else experienced similar?

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Go to the main website of ThyroId UK - link below. Click onto ABOUT TESTING in the Menu - where you will find the companies offering tests for Active B12.

thyroiduk.org

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Hi, Just ordered my Active B12 test..... In your experience will GP's honour the findings?

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I have not had that experience as I live in Crete. At least you will know 😊 The test still does not tell you what is in the cells - only the amount of B12 that can be transported into the cells. Raised Homocysteine and MMA can be an indicator of low levels in the cells.

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Hi,

Sorry to hear your endo was not interested in your B12 result.

"Consultant Endocrinologist said B12 was "normal" and in range that he would not support any further investigation"

Link about What to Do Next if B12 Deficiency is suspected

b12deficiency.info/what-to-...

The following UK articles/documents make it clear that people who are symptomatic for B12 deficiency should be treated even if b12 is within range. Is your endo aware of all of them?

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

More B12 info

NICE CKS

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

BNF Chapter 9 Section 1.2

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

Lots of B12 info in pinned posts on this forum. Useful summary of mainly UK b12 documents in third pinned post.

Link about writing letters to doctors about B12 deficiency.

My personal opinion is that it may be better to put things in a letter rather than just saying them in discussion or handing over copies as it may be harder to ignore a letter. My understanding is that in UK, letters to doctors are filed with a person's medical notes.

b12deficiency.info/b12-writ...

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

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

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

Having an auto-immune condition eg Hashimoto's thyroid disease increases the risk of developing other auto-immune conditions eg PA.

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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.

"Living With Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

" Could It Be B12?: An Epidemic of Misdiagnoses " by Sally Pacholok and JJ. Stuart (USA authors)

PAS (Pernicious Anaemia)

If you suspect PA is a possibility, may be worth joining and talking to PAS.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

"Considering a private Active Vit B12 test"

Links about blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count

labtestsonline.org.uk/tests...

I am not medically trained.

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