Newbie help with blood results please

Diagnosed 10 years ago with Graves disease, 2 years ago total Thyroidectomy.

I have been sent to this site from Thyroid UK regarding my B12 and folate blood tests, I was told it would be better to post it here. I also need help in convincing my GP to perscribe B12 and Folate as the Endo has said "Her blood test shows she is rather folate deplete with an assay result of just 2.2 (4.6-18.7). The B12 is likewise a little low at 157 (197-771). Her Coeliac screen was negative, I've asked her to revisit her diet and another folate will be done in four months time to see if she ought to move onto 5mg a day tablet supplement".

I am seeing my GP tomorrow, and I need help in explaining to him why my levels are so low and why I need them increased. As for revisiting my diet, I am a lifelong vegetarian and my diet has never changed.

The pain that started in my hands has now traveled up both of my arms and in my legs, it's waking me up 2-3 times a night and preventing me to sleep.

Thank you very much for taking the time to read this post.

3 Replies

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  • The 'experts' will be along to advise you and suggest reference material to take with you. It sounds as if your Endo. and your GP needs advising too. Check the symptom list on the PAS site to see if you have any neurological symptoms apart from the arms.

  • I see you are going to your GP tomorrow.

    Have a look at the information on the right. Hopefully that will give you some idea of what you need from your GP.

    Sleepybunny and fbirder also have links to important information about B12 and PA. If you click on their names you should find the references.

  • Hi,

    I'm not sure I would call your B12 levels a little bit low, it looks significantly below the lower end of the reference range.

    Are you In UK?

    If yes, I'd suggest reading "BSH Cobalamin and Folate Guidelines"

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

    Flowchart in BSH Cobalamin guidelines

    stichtingb12tekort.nl/weten...

    Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (intrinsic Factor Antibody) test and start initial b12 treatment.

    As you are vegetarian, GP may well assume B12 deficiency is related to diet but it is possible for someone to have more than one cause of B12 deficiency at the same time.

    b12deficiency.info/what-are...

    Do you eat plenty of dairy and eggs , which are good natural sources of B12? Do you take any vitamin supplements that contain B12?

    Who gets PA and B12 deficiency?

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

    pernicious-anaemia-society....

    Are you symptomatic for B12 deficiency?

    pernicious-anaemia-society.... see PAS checklist

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    What to do next?

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    Other B12 info

    Some may not be relevant if you're not in UK.

    1) Pinned posts on this forum.

    I found it helpful to read Fbirder's summary of mainly UK B12 documents. Link to his summary in third pinned post.

    2) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    3) BNF Chapter 9 section 1.2

    evidence.nhs.uk/formulary/b...

    Info on UK b12 treatment is also in BSH Cobalamin guidelines

    4) PAS website

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Martyn Hooper's blog about PA and B12 issues

    martynhooper.com/

    5) B12 deficiency Info website

    lots of b12 info plus an interesting B12 blog

    b12deficiency.info/

    6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with UK b12 guidelines.

    Martyn Hooper is the chair of PAS. He has written two other books about PA and B12 deficiency. I also found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" interesting as I could relate to some of the case studies.

    7) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency. Reading this was a light-bulb moment for me.

    Have you had a recent full blood count (FBC) test?

    FBC can have useful clues as to whether iron deficiency, folate deficiency or B12 deficiency are possibilities.

    Low iron can lead to small red blood cells (microcytosis). low B12 and /or low folate cna lead to enlarged red blood cellls(macrocytosis). A personw ith both low iron and low B12/low folaet may appear to have a normal range MCV on FBC because effects of low iron mask effects of low B12/low folate.

    b12deficiency.info/b12-test...

    labtestsonline.org.uk/under...

    patient.info/doctor/macrocy...

    Some people have a blood smear/film which may show both macrocytic and microcytic cells in same sample if person has both low iron and low B12/low folate.

    labtestsonline.org.uk/under...

    The endo mentioned low folate. I have read that it is important to make sure any co-existing b12 deficiency is treated if a person is going to have folate treatment. See Management section in next link.

    patient.info/doctor/folate-...

    "Coeliac screen was negative"

    It is possible to have Coeliac disease even if Coeliac antibody test is negative. A person with IgA deficiency will not make Coelaic antibodies. Did you have an IgA test?

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

    nice.org.uk/guidance/ng20?u... See section 1.2.2

    I am not a medic just a person who has struggled to get a diagnosis.

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