Posting for my daughter

My daughter is 19 and has, for a while, been feeling overly tired, and not refreshed after a long sleep. She says that when she has a 'dizzy' spell, she feels agitated by others even though they may not even be talking. Her dizzy spells have been addressed and her blood / sugar levels looked at and they are perfectly fine. (I too experienced these spells for YEARS, but they have disappeared completely since going gluten free / changing diet). I know that she does have bad reactions (indigestion) to some foods that are wheat based, so maybe there is some gluten sensitivity there.

She has had a full blood count, thyroid panel (to see if she is hypothyroid like me), etc.

Her thyroid is fine but her doc has requested to see her regarding her folate level.

In order to go armed with knowledge to her appointment, would you mind looking over her results to see if you think PA or B12 issues might be possible?

SERUM FOLATE 3.8ugl (4.6 - 18.7)

SERUM FERRITIN 18 (15 - 300)

SERUM B12 303 (180 - 700)

SERUM IRON LEVEL 16 (7 - 26)

TRANSFERRIN 3.23 gl (2 - 3.6)

TRANSFERRIN SATURATION 20% (15 - 50)

If you need any info from her Full Blood Count, then I have those too.

Thank you

19 Replies

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  • Hi and good evening janey1234

    I'm not a medically trained person but do know that Folate and Vitamin B12 help iron to make red blood cells and your daughter's SERUM FOLATE 3.8ugl (4.6 - 18.7) level is clearly deficient and may well be the cause of her symptoms.

    The SERUM B12 303 (180 - 700) although probably flagged "Normal" may also be on the low side as in some countries levels below 500 are treated

    Is your daughter "picky" about eating her vegetables?

    Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk.

    I recall my mother shouting at me across the dinner table - "Clive eat your greens"

    I wish you both well.

  • Thank you clivealive ... she does eat raw spinach and drinks orange juice but none of the others on the list. I know she eats well though, drinks water all of the time (I know that won't help😊)

    Her B12 is flagged as normal. If she just gets a dose of folic acid from the GP and he ignores her B12, is it worth her supplementing herself with B12 sublingual & B Complex (after she has finished the folic acid prescription) to raise her B12 levels to over 500 or should the GP be doing other tests?

    I want her fully prepared for her appointment and to not be fobbed off.

    Thank you

  • It can't do any harm to try B12 supplements, so give them a go along with the folic acid.

    If your daughter pays for prescriptions then you may find it cheaper to by 400ug tablets of folic acid from Tesco. One of those a day should sort it.

  • Will do....thank you. Interested to see what GP does 😊

  • Sorry....just spoken to my daughter re the food list, she also eats lots of onions, leeks, corgettes, mushrooms, sweet potatoes, peppers toms....

  • 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. Folic acid is also being "fortified into" many breakfast cereals.

    As I said I'm not medically trained but I wonder whether your daughter's doctor might test for Crohn's disease or celiac disease which may cause malabsorption of Folate but hopefully it is nothing serious and I wish you both well. Please let us know how you get on.

  • Thank you clivealive .

    Interesting that celiac has been mentioned twice. Lots to look into...I hope her GP considers all of her symptoms. Thanks again @clivealive for being so helpful, medic or not ☺

  • Is there Coeliac disease amongst blood relatives?

    In UK, NICE guidelines on Coeliac disease recommend that close blood relatives of sufferers are tested.

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

    See Section 1.1.1

  • Nobody has coeliac in our family but I definitely have gluten sensitivity and have been GF for 8 months and noticed huge benefits. I have suggested that she either avoids those foods that cause her reaction or try a GF alternative ie pasta. I know that she doesn't get the same reaction when she has tried GF pasta so I will get her to mention all of this to her GP.

    Thank you. ☺

  • If she is going to be tested for Coeliac disease, Coeliac UK say on their website that it is important to keep eating gluten.

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

    See section "Keep eating gluten throughout the diagnosis process".

    I think if someone stops eating gluten before being tested then they may not produce enough antibodies to show up in the tests.

  • Thanks for the top tip. I know she is still eating gluten 🌱

  • "bad reactions (indigestion) to some foods that are wheat based"

    Has she been tested for Coeliac disease?

    In UK, NICE guidelines recommend testing for Coeliac antibodies and IgA (an immunoglobulin) levels. People with IgA deficiency will not produce usual Coeliac antibodies and may need alternative tests for Coeliac disease.

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

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

    Coeliac disease may affect B12 levels as gut problems may affect absorption of B12 and some other nutrients.

    Who gets PA and B12 deficiency?

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

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

    B12 deficiency in young people

    b12deficiency.info/children...

    There are stories on Martyn Hooper's blog about young people with PA and B12 deficiency.

    martynhooper.com/

    There are case histories about young people with B12 deficiency in these books.

    1) "Could it Be B12" by Sally Pacholok and JJ. Stuart

    2) "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    3) "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper mentions teenagers with B12 deficiency. I gave a copy of this book to my GPs.

    Blood tests

    Her folate is below range and her ferritin is only just above lower limit. Has GP suggested an iron supplement? I'm not sure what units are used in B12 results , is it ng/L?

    Link about iron studies

    labtestsonline.org.uk/under...

    May help in understanding of iron related results.

    "SERUM FERRITIN 18 (15 - 300)

    SERUM IRON LEVEL 16 (7 - 26)

    TRANSFERRIN 3.23 gl (2 - 3.6)

    TRANSFERRIN SATURATION 20% (15 - 50)"

    FBC (Full Blood Count)

    labtestsonline.org.uk/under...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    Low iron can lead to small red blood cells (microcytosis). low b12 and/or low folate can lead to enlarged red blood cells (macrocytosis).

    A person with both low iron and low B12/low folate may appear to have a normal MCV (mean corpuscular volume) on FBC because the effects of low iron on red blood cells may mask effects of low B12/low folate.

    In range B12 results

    People can be highly symptomatic with results that are normal range. I was highly symptomatic for B12 deficiency for many years with results from 300 to 400ng.

    See link below about being symptomatic with in range results. Some info may not apply if you're not in UK.

    b12deficiency.info/b12-writ...

    Is she symptomatic for B12 deficiency?

    pernicious-anaemia-society.... See PAS Symptoms checklist. I gave a copy of this list to my GPs with all my symptoms ticked plus added others that were not on list.

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    In UK, it is recommended in "BSH Cobalamin and Folate guidelines" that people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment. This applies whether B12 is low or within range.

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

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    IFA test can help to diagnose PA (Pernicious Anaemia) but test is not always reliable and it is possible to still have PA even if IFA test result is negative (called Antibody Negative Pernicious Anaemia).

    Martyn Hooper , chair of the PAS, tested negative more than once before testing positive on IFA test.

    martynhooper.com/2010/09/21...

    Supplementing B12

    "is it worth her supplementing herself with B12 sublingual & B Complex (after she has finished the folic acid prescription) "

    Supplementing B12 without a diagnosis of B12 deficiency can make it extremely difficult to get a diagnosis. See links below.

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    Folate Deficiency

    You mention she is on folic acid. I have read that it is important for doctors to make sure any co-existing b12 deficiency is treated if a person is on treatment for folate deficiency. See Management section in next link for more details.

    patient.info/doctor/folate-...

    Other B12 info

    1) Pinned posts on forum. I found fbirder 's summary useful to read. link to his summary in third pinned post.

    2) BMJ B12 article

    Summary emphasises the importance of treating someone who is symptomatic for B12 deficiency.

    bmj.com/content/349/bmj.g5226

    "her appointment is next week "

    Has she/you considered contacting PAS before appt? They may be able to point you to useful info.

    PAS

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response.

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

  • She hasn't been prescribed anything yet as her appointment is next week but the results printout says 'consider poor diet or malabsorption, suggest folic acid...check B12 deficiency before commencing therapy).

    As her B12 says 'Normal' I am assuming (through experience with low, but 'normal' B12 myself) that they will gloss over it and just issue folic acid.

    Thank you for the links...☺. Will put all of this together for her.

  • "Her thyroid is fine"

    It might be helpful to put thyroid results on Thyroid UK forum on HU.

    Was it only TSH that was tested?

    There are other thyroid tests that can help to provide a fuller picture of thyroid health.

    Thyroid UK website

    thyroiduk.org.uk/tuk/index....

    Marz on this forum has posted about thyroid issues. Might be worth looking for her posts.

    Did GP say her thyroid was fine?

    I learnt to always get copies of all blood test results and check them after being told everything was fine /normal and then finding abnormal or borderline results on the copies. I have read that some people can show symptoms of thyroid disease with a TSH that is within normal range.

    There are quite a few on this forum who have both PA/B12 deficiency and thyroid disease.

    B12 Deficiency Neurological Symptoms

    You mention dizziness which is normally considered to be a neurological symptom. If your daughter is found to have b12 deficiency and is offered treatment, in UK those with b12 defic with neuro symptoms are supposed to get more intensive B12 treatment.

    See BNF link below for details of UK B12 treatment.

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

    UK B12 treatment info is also in BSH Cobalamin and Folate guidelines (link in above post) about a quarter through document.

    Quite a few on this forum who have B12 deficiency with neuro symptoms, struggle to get correct level of treatment.

  • Don't worry...I'm already aware of the Thyroid group...got the T-shirt (lol) and she managed to get her TSH, FT4 and FT3 all tested (after 'teaching' them all about how to PROPERLY test her thyroid) and I've seen the results. Hers are better than mine and I'm medicated.

  • has she had tests for thyroid antibodies?

    thyroiduk.org.uk/tuk/about_...

  • Asked for TPO ab, as well as Vit D,but they refused to do it. When she comes home in the summer we will poss' be looking into private testing from Blue Horizon, etc... if no improvement or GP still refuses to test. Thankfully due to my year long thyroid and B12 issues I know quite a bit but not about the low folate bit. ☺

  • Hi again,

    Think there are two other sorts of thyroid antibodies that could be tested for....

    TG Ab

    TSI Ab

    As well as private testing, if you're in UK, you could consider contacting HDA patient care trust. it's a UK charity that offers free second opinions on medical diagnoses and treatment.

    HDA pct

    hdapatientcaretrust.com/

    HDA pct tel no 0207 935 8366

    HDA pct online contact form

    hdapatientcaretrust.com/con...

    "Asked for TPO ab, as well as Vit D,but they refused to do it"

    If there are thyroid problems in the family I'm surprised they didn't test antibodies.

    Vitamin D

    This next link says Vitamin D deficiency is very common.

    patient.info/health/vitamin...

    PHE (Public Health England) advised recently that everyone should consider taking a daily Vitamin D supplement in autumn and winter.

    gov.uk/government/news/phe-...

  • Oh trust me.... I could go on n' on about my daughters experience at this practise but you would die of boredom / laughing.

    Everything she asked for was on the bloodtest list for the nurse who took her bloods, full thyroid panel, both antibodies, vit d, folate, ferritin, b12 as we did originally think her symptoms were thyroid related as there is a strong family history. They chose then not to test vit d and antibodies.

    Nothing surprises me anymore. I will arm her again with her family history, printouts of info and see where she goes from there.

    Thank you x

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