Advice on what to do next.: Help with... - Pernicious Anaemi...

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Advice on what to do next.

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Help with results for my 18 yr old son.

my son has been suffering from symptoms of fatigue, concentrating problems ++ (with A levels looming) memory problems ++, some mild personality changes , headaches. He had a short anaesthetic 2 years ago to fix a broken nose and feels he has declined since then. He still falls within range for B12 /folate, so some advice on how to proceed would be appreciated. B12 deficiency run in both sides of our family. Not vegetarian Awaiting MMA and Thyroid results. Just wondering if we should start on B12 sublinguals, iron and it D supplements in the meantime.

I am hoping to chat with the doctor soon about this.

Thanks

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Sleepybunny profile image
Sleepybunny

Hi,

I'm really sorry but I can't read results. Is it possible for you to type out at least some of them particulary B12, folate, ferritin and full blood count?

"Just wondering if we should start on B12 sublinguals, iron and it D supplements in the meantime."

My personal experience is that supplementing with B12 prior to tests/consultations can make it virtually impossible to get a diagnosis. See link below.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

Are you in UK?

In UK, the "BSH Cobalamin and Folate Guidelines" make it clear that patients 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.

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

b12deficiency.info/b12-test...

Has GP/consultant suggested Homocysteine and Active B12 as well as MMA?

active-b12.com/frequently-a...

Full blood count (FBC) can give clues as to whether iron deficiency, folate deficiency or B12 deficiency is a possibility. Low iron can lead to small red blood cells (microcytosis). low B12 or low folate can lead to enlarged red blood cells (macrocytosis). A person with both low iron and also low B12 and/or low folate may appear to have a normal MCV on FBC becuase effects of low b12/low folate on red blood cells can be masked by effects of low iron.

If a patient has both low iron and low B12/low folate then doctors may consider a blood smear/film which may show up both macrocytic and microcytic cells in teh same sample.

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

patient.info/doctor/macrocy...

If you're in UK, I'd recommend reading whole BSH Cobalamin and Folate Guidelines. Sadly there are some GPs in UK who may not be aware of these guidelines (I gave my GPs a copy).

BSH Cobalamin and Folate Guidelines

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

Flowchart in BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

Other B12 info

Some may not be applicable in you're not in UK.

1)Try to spend some time reading Pinned Posts on this forum. I found Fbirder's summary of b12 documents helpful. link to his summary in third pinned post.

2) PAS website

Some members of the forum join the PAS.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Martyn Hooper's blog about PA and B12 deficiency

martynhooper.com/

There are stories on it about young people with PA/B12 deficiency.

martynhooper.com/2015/02/10...

martynhooper.com/2015/08/20...

3) B12 deficiency Info website

lots of b12 info and an interesting blog

b12deficiency.info/

4) b12d.org website

b12d.org

5) BMJ B12 article

bmj.com/content/349/bmj.g5226

6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of PAS.

I think he mentions teenagers with B12 deficiency in this book.

He has written two other books about PA and B12 deficiency. I also found "Living with Pernicious Anaemia and Vitamin B12 deficiency" useful because it had several case studies.

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

Very comprehensive book about B12 deficiency with lots of case studies.

8) BNF Chapter 9 Section1.2

UK B12 treatment info

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

Uk B12 treatment info is also in BSH Cobalamin guidelines, about a quarter through document.

"B12 deficiency run in both sides of our family"

Who gets PA?

pernicious-anaemia-society....

Causes of B12 deficiency

b12deficiency.info/what-are...

What to do next?

b12deficiency.info/what-to-...

Link about B12 deficiency in children, mentions teenagers.

b12deficiency.info/children...

"He had a short anaesthetic 2 years ago to fix a broken nose and feels he has declined since then"

Did he receive any nitrous oxide during surgery?

gov.uk/drug-safety-update/n...

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

B12: 393 (145-569),

folate 20.6 (8.83-60.8),

ferritin 35 (30-400),

MCV 85 (80-100),

RDW 36.6 (39-52),

vit D 54 (75-100)

Leukocytes 6.1 (4.3-10)

Hb 9.6 (8.5-11)

Ht 44 (41-51)

Erythrocytes 5.2 (4.6-6.2)

We Live in Holland. Just spoke with GP who is delighted with these test results . Trying to understand why ferritin is low but Hb and Ht seem ok.

I know from personal experience that "in range "does not mean optimal.

Gambit62 profile image
Gambit62Administrator in reply to

Does your son supplement B12 at all?

Basically the B12 is actually quite good - no signs of macrocytosis (though 25% of B12 deficient don't present with macrocytosis)

VitD is low and could be the problem as symptoms overlap considerably - or cold be thyroid.

Don't start supplementing B12 until you have exhausted all the possible tests.

I think there is actually a PA forum in the Netherlands but not aware of the details.

Sleepybunny profile image
Sleepybunny

Hi,

Have you looked at the Stichting Tekort website?

stichtingb12tekort.nl/

It's a Dutch B12 website. There is an english section on the website. Links to some of Stichting Tekort articles in third pinned post on this forum.

Stichting Tekort contact details

stichtingb12tekort.nl/over-...

I did notice that they mentioned "B12 cafe" on website. I took this to mean support groups in Netherlands but I may have misunderstood as I don't speak Dutch. Perhaps there is one near you.

There were e-mail contacts for areas listed underneath.

Someren/Eindhoven

Maastricht

Pijnacker/Nootdorp/Delft e.o.

Zeeland

Rotterdam/Barendrecht

Bolsward

Arnhem

Noord-Holland en Texel

Sleepybunny profile image
Sleepybunny

I have found articles online and in books that suggest it is possible to be symptomatic for B12 deficiency with levels that are within normal range. I was highly symptomatic with normal range results.

May be something in this link that is useful although info aimed at UK patients.

b12deficiency.info/b12-writ...

I'd strongly recommend reading "Could It Be b12" by Sally pacholok and JJ. Stuart. Think this book mentions patients who were symptomatic with normal range results.

Think there is a dutch version of this book.

b12deficiency.info/books/

Some people can have "functional b12 deficiency". There is plenty in their blood but for some reason it's not getting into the cells.

nhs.uk/Conditions/Anaemia-v...

ncbi.nlm.nih.gov/pubmed/191...

ncbi.nlm.nih.gov/pubmed/146...

Thanks for all the advice. I will carefully look through it all.

MaryMary profile image
MaryMary

Have you ruled out gluten sensitivity? VIt D looks low to me. hope you find the solution.

Mary

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