Pernicious Anaemia Society
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Advice sought for a 12 year old with underactive thyroid

Looking for some advice please and was directed here by someone on Thyroid Unlocked. My 12 year old was diagnosed with an underactive thyroid. We were growing more and more concerned she was undermedicated but bloods by our GP in July indicated (according to their range) she was within range. (3.38 tsh range0.35-5 mU/L. Disagreeing, we did some private bloods with Blue Horizon this week and they came back with an increased TSH amongst other things, off both the Blue Horizon and the GP's scale at 7.24.

She is showing deficiencies in folate, B12 (borderline) and Vit D.

B12 256 (pg/ml 197-771)

Folate 2.2 (ug/L > 2.9)

Ferretin 34 (ug/L 13 - 150)

C Reactive protein 0.9 (mg/L <5.0)

25 OH vit D 38 (NMOL/l 50 - 200)

Background: There's a strong history of thyroid issues in my family. I don't seem to have anything but I do have ME/fibromyalgia and my dad has Crohns. Results for me a good number of years ago were inconclusive about a B12 deficiency which couldn't be corrected with oral supplements so I started with B12 injections. They are every 3 months and do make a difference to how I feel. Every 3 months isn't enough though.

Looking for any advice or suggestions for my daughter with regards to the B12 as we head back to the GP, hopefully not to do battle.

Thank you.

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the child is folate deficient. Difficult to evaluate B12 just on the basis of serum B12 - it's not a gold standard test.

Not sure either about the range on ferritin - presume she doesn't have periods yet in which case the range may be a bit on the low side - were the lab aware of the age of the patient?

certainly looking as if there may either be problem with diet or with absorption if her appetite is good and she is getting enough vitamins and minerals in her diet.

Please be aware that HU isn't a substitute for proper medical advice - I'm particularly highlighting this in this instance as ranges etc for children can be different from those for adults.

Possible absorption problems would include coeliacs, crohn's, PA.

Also - symptoms are an important part of evaluating B12 deficiency because serum B12 is only a rough guide so would be good to put together a list of symptoms and also when they started - particularly given the other conditions but also because of the folate position - folate tends to come on quickly - B12 slowly - and symptoms are very similar because the two tend to be used together for a lot of processes

pernicious-anaemia-society....

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Yes the lab knew her dob and she hasn't started her periods yet. Her diet is pretty good which makes me think there are absorption issues. Should we be asking to be referred on to a specialist, thyroid issues aside?

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certainly ought to be getting the GP to think about what might be causing problems with vitamin and mineral levels given that she has a good diet.

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Hi,

I am not medically trained just someone who has struggled with symptoms of B12 deficiency.

I'd suggest contacting PAS (Pernicious Anaemia Society) for advice.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone available

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Symptoms of B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

There are stories on Martyn Hooper's blog that may be relevant. Martyn Hooper is the chair of the PAS.

martynhooper.com/

Link about B12 deficiency in children

b12deficiency.info/children...

B12 books

"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. There are references to children and teenagers in this book.

"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. Chapter about children with B12 deficiency.

There is a paediatric version of above book called "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know"

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about children and adults who are symptomatic for B12 deficiency with normal range results.

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Many thanks for taking the time to give me all that info. I think I will start with the Could it Be B12 book.

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I think your daughter should be referred to a specialist. Children's ranges are often different. I'm not medically qualified but my grandson, who has a lifelong medical condition, is always seen by a consultant as the annual tests he has ( he's younger than your daughter)?are very different to those given to an adult.

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She has been seen at the local children's hospital by an endrocologist for the initial diagnosis. The next appointment was to see nurses there for bloods. They then cancelled her appointment for next week, in June, scheduling it for January. That's far too long for her to wait to be seen. I took her to the gp in July and the thyroid test results were within their range. I wasn't happy or convinced and so we did the Blue Horizon ones. As far as I know the vitamins haven't been checked before as part of the thyroid blood works.

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Hi again,

I forgot to say that if you're in UK, I think the following articles/documents are worth reading

1) BSH Cobalamin and Folate Guidelines

UK document that gives guidance on diagnosis and treatment of B12 and Folate deficiency. It's possible that some UK GPs may not be aware of this document.

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. Flowchart also makes it clear that patients who are symptomatic for B12 deficiency should have an IFA test (Intrinsic Factor Antibody) and start initial B12 treatment.

IFA test can help to diagnose PA but test is not always reliable and it is possible to still have PA even if IFA test result is negative/normal.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises the need to treat people who are symptomatic for B12 deficiency even if B12 is within range.

3) BNF British National Formulary Chapter 9 Section 1.2 (adult BNF)

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

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

GIves details of UK B12 treatment for adults.

There is also a children's BNF which gives details of treatment for children

Hydroxycobalamin (children)

bnfc.nice.org.uk/drug/hydro...

Folic Acid (children)

bnfc.nice.org.uk/drug/folic...

It's possible to get own copies of BNF and Children's BNF from good bookshop or internet retailer.

UK B12 treatment can also be found in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

4) UK NEQAS B12 Alert

Link to UK NEQAS statement in link below.

b12deficiency.info/b12-writ...

Parents

Sometimes parents who are trying to get answers for their children's health problems can be misunderstood, which is why I suggested it might be worth contacting/joining PAS (Pernicious Anaemia Society) for advice/support.

There is a story relating to this issue on Martyn Hooper's blog. Link below.

martynhooper.com/2017/07/21...

Article about B12 deficiency in Children (English language) from Stichting Tekort website

stichtingb12tekort.nl/weten...

"I do have ME/fibromyalgia "

"dad has Crohns"

"strong history of thyroid issues in my family"

As there are auto-immune diseases in family, I wondered if anyone had had an Intrinsic Factor Antibody test for PA.

Having an auto-immune condition can increase the chances of developing other auto-immune conditions.

B12 deficiency can sometimes be misdiagnosed as other conditions including ME/CFS.

b12deficiency.info/misdiagn...

martynhooper.com/2015/08/04...

Private Health Care

Some people on forum choose private health care although this is no guarantee of better care.

HDA patient care trust

hdapatientcaretrust.com/the...

UK charity that offers free second opinions on medical diagnoses and medical treatment. Quick to respond to enquiries, may need a full medical history.

Another B12 blog

b12deficiency.info/

An interesting blog on B12 issues can be found on "B12 deficiency Info" website. Person who runs website can be contacted by e-mail. Contact details on website.

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Thanks again, all really helpful. Advice much appreciated.

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Were the thyroid anti-bodies tested ? - TPO & Tg. With auto-immunity issues in the family it may well be worth a check. Also with Hashimotos - absorption issues could be a problem ....

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Yes they were and it is an autoimmune thyroid issue. I do think there are gut absorption issues. Feel she has been let down by both gp and children's hospital.

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"I do think there are gut absorption issues"

Has she had tests for Coeliac disease?

It is still possible for people to have Coeliac disease even if Coeliac antibody test (tissue transglutaminase antibody) is negative/normal. People with IgA deficiency (an immunoglobulin) will not make Coelaic antibodies to gluten and may need alternative tests.

Coeliac UK Blood tests

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

Coeliac UK helpline 0333 332 2033

NICE guidelines Coeliac Disease

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

Are there any blood relatives with Coeliac disease?

NICE guidelines mention in Section 1.1.1 that people with unexplained iron, folate or B12 deficiency should be tested for Coeliac disease as should first degree relatives of Coeliac sufferers.

NICE guidelines for Coeliac disease recommend testing both

1) total IgA

2) tissue transglutaminase antibody (tTG antibody)

Folate 2.2 (ug/L > 2.9)

Your daughter's folate result was below range, her ferritin result and b12 result were at the lower end of the normal range.

Coeliac disease symptoms

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

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

Blood tests

Has your daughter had a full blood count (FBC) test?

There can be useful clues on a full blood count as to whether a person might have iron, folate or B12 deficiency.

Low iron can lead to smaller red blood cells (microcytosis). Low B12 or low folate can lead to enlarged red blood cells (macrocytosis).

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

Links below may contain info/reference ranges aimed at adults not children.

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

I have read that it is important to make sure any co-existing B12 deficiency is treated in someone who is being treated for folate deficiency. See Management section in next link.

patient.info/doctor/folate-...

As Gambit62 mentions reference ranges for children can differ from those for adults.

It may be possible to track down the reference ranges for adults and children used in different parts of UK by submitting an FOI (Freedom of Information) request to local NHS website.

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I have coeliac on the list to ask about, no she hasn't been tested. We'd been to the GP a while ago (pre thyroid stuff) about bloated sore tummy etc and they prescribed fibre supplements, which in the end we didn't use. She doesn't look unwell and weight etc is within range for age and height.

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I agree with you---- far too long waiting time for a child. I'm still on a waiting list to see a Rheumatologist (8 months). I'm afraid it's the under funded, poorly organised NHS ( too many chiefs) Very, very unfair to a child.

I think if you look at the BNF guidelines, and maybe even get your M.P on side, hopefully your daughter will be seen sooner.

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There was no reason given for the hospital cancelling her appointment that should be next week and the GP was fine about referring her again if need be to be seen quicker. We're now at the 'need be' stage. It is a situation where I'd prefer a holistic view of things but the NHS isn't very good at that either in my experience. I keep hearing the endocrinologist in my head from that initial appointment 'just take this little tablet every day and you will be absolutely fine ...'

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