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B12/folate

Keisha117 profile image
6 Replies

I am here on behalf of my daughter, she is 32 and has pernicious anaemia and Hashimotos. She had her first B12 injection 2 months ago and hasn't been asked back, how often should she have them and should GP be addressing her below range folate?

Thanks for reading.

Vitamin B12 221 pg/L (190 - 900)

Ferritin 33 ug/L (30 - 400)

Folate 2.6 ug/L (4.6 - 18.7)

Iron 6.9 umol/L (6.0 - 26.0)

Transferrin saturation % 13 (10 - 30)

Red blood count 4.46 (3.8 - 6.8)

White cell count 6.18 (4 - 11)

Haemoglobin 120 (115 - 150)

MCV 78.2 fL (80 - 98)

MCHC 376 (310 - 350)

MCH 28.1 (28 - 32)

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Keisha117
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6 Replies
clivealive profile image
clivealiveForum Support

If your daughter has P.A then her doctor should be treating her in accordance with the N.I.C.E. guidelines.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If she is having neurological symptoms her "maintenance" B12 injections should be every eight weeks.

Did your daughter have "loading doses" - perhaps every other day for a couple of weeks, or was the injection two months ago a "one off"?

Your daughter is deficient in Folate.

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 works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but have had P.A. for more than 45 years.

I wish you both well

judburke profile image
judburke

Her ferritin is also too low! Is she suffering tiredness and hair loss? She is in range but right at the bottom which isn't good enough for most people. I would consider taking an iron supplements to get this up to at least 70 to 90. Take the iron with vitamin c to help absorption and to make it more gentle on the tummy. It takes a while to raise the levels and then a bit longer for symptoms to improve

Gambit62 profile image
Gambit62Administrator

Where are you based? treatment regimes vary from country to country. Unless your daughter's problem is definitely dietary then some sort of loading regime would be general practice then followed by maintenance shots - loading does vary - sometimes 3x weekly - sometimes weekly. Maintenance varies from 1 month to 3 months though what really counts is symptoms.

On the folate - yes that needs to be treated - if only because you need both folate and B12 for a number of processes and it is easy for folate to get depleted in the early stages of treatment with B12

The blood results above also suggest that there may be an iron deficiency going on - signs of microcytosis in low MCV and MCH - the ferritin is also on the low side as is the iron. Some studies suggest that people with thyroid problems actually need slightly higher feritin levels - ie bottom of the range might be raised by about 20-30 points.

Have any tests been done to establish if there is an absorption problem?

Sleepybunny profile image
Sleepybunny

Hi keisha,

"she has pernicious anaemia and Hashimotos. She had her first B12 injection 2 months ago and hasn't been asked back"

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

Does she have a confirmed diagnosis of PA? May be worth getting proof of PA diagnosis.

Access to medical records (UK info)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

UK b12 treatment

UK b12 treatment info can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

All UK GPs will have access to BNF, probably a copy sitting on their desk or bookshelf. It's also possible to get own copy from a good bookshop or internet retailer.

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

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

2) BSH Cobalamin and Folate Guidelines

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

UK B12 treatment info is about a quarter through above document.

In UK, B12 deficiency caused by diet is sometimes treated with oral B12 tablets but B12 deficiency caused by absorption problems eg PA (Pernicious Anaemia) is treated with B12 injections.

In UK, people with B12 deficiency without neuro symptoms are supposed to get 6 loading injections over 2 weeks then injections every 3 months.

People with B12 deficiency where there are neurological symptoms are supposed to get loading injections every other day for as long as symptoms continue to get better then it's an injection every 2 months.

Has she got any neuro symptoms? See lists below.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

PAS (Pernicious Anaemia Society)

Might be worth joining PAS. They are helpful and can pass on useful info and in some cases intervene on behalf of people struggling to get correct level of treatment. Think this is usually members in UK.

pernicious-anaemia-society....

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

PAS is based in Wales, UK but has members from around the world. Members can access details of local PAS support groups which may be source of info on helpful GPs etc. Most PAS support groups are in UK but one in USA and one in Australia.

pernicious-anaemia-society....

B12 blogs

Martyn Hooper's blog about PA and B12 issues may have stories that are relevant to you.

martynhooper.com/

There is also an interesting blog on "B12 deficiency info" website about B12 issues.

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.

"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.

Unhappy with treatment (UK info) ?

Link about writing letters to doctors about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about undertreatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic with an in-range B12 result.

CAB

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnosis and treatment.

hdapatientcaretrust.com/

"should GP be addressing her below range folate?"

What did GP say about below range folate?

I have read that if folate deficiency is treated it is very important to treat any co-existing B12 deficiency . See Management section in next link about folate deficiency.

patient.info/doctor/folate-...

Iron Deficiency

I note that Gambit62 mentions the possibility of iron deficiency due to low MCV and low MCH. It's possible that the effects of low iron on the red blood cells are masking effects of low B12/low folate on red blood cells.

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

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

A blood film/blood smear test may show both microcytic and macrocytic cells in someone who has both low iron and low folate/low B12.

labtestsonline.org.uk/under...

Her ferritin (a stored form of iron) is in range but at lower end of range.

Has she ever had a set of iron studies tests?

labtestsonline.org.uk/under...

I am not medically trained just someone who has struggled to get a diagnosis.

SusanLMckinney profile image
SusanLMckinney

having a high red count does you no good when the blood cells are not mature and do not work properly. They don't carry oxygen or iron like they should if you have pernicious anemia. There are different tests for B12.

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