B12/folate advice please for hypothyroid patient

[Kyla665]

I have Hashimotos and possible coeliac. My new results for vitamins are

Vitamin D 38.2 (25 - 50 deficiency)

Folate 2.2 (2.5 - 19.5)

Ferritin 28 (30 - 400)

Vitamin B12 199 (190 - 900)

I have loading doses of vitamin D and B12 injections done every 3 months since Feb 2017, also iron deficient and folate deficient and I take 5mg folic acid, thank you

[Gambit62 Administrator]

if your B12 level is recent then its quite probable that you aren't getting B12 injections frequently enough.

If you have neurological symptoms then you should be on maintenance doses every two months, but that may also not be frequent enough. getting through to your GP may be very difficult.

Please take a look at some of the responses by Sleepybunny who references a lot of materials and resources that may help

[LilliRaindrop in reply to Gambit62]

Thanks so much very informative. I am thinking you are very accurate with the "getting through to my GP being difficult" basically my weekly shots are kinda pointless. I am going to keep trying.

[Kyla665 in reply to Gambit62]

They were taken in August 2017. Thanks

[Gambit62 Administrator in reply to Kyla665]

which is after you had loading shots - guessing that you feel well and truly dead long before you get to a maintenance shot.

[Sleepybunny]

Hi Kyla,

Some B12 info that may be of interest....

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

What does GP think is causing your B12 deficiency?

Have you had Coeliac blood tests?

Has GP referred you to a gastro-enterologist?

Coeliac Disease

NICE guidelines suggest anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood tests

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

Have you been tested for PA (Pernicious Anaemia)?

In UK, people with suspected PA are given an Intrinsic factor Antibody test. This test is not always reliable..it's possible to have a negative or normal rnage result and still have PA. See flowchart link below.

Have you been tested for H Pylori infection?

patient.info/health/dyspeps...

UK B12 documents

If you're UK based I'd suggest reading all of these articles/documents.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

If you suspect PA then may be worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

Unhappy with Treatment (UK info)/

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about What to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Best piece of advice I got was to always get copies of all my blood tests. Some on forum get a complete set of medical records. Can be very interesting to see what doctors have written in past.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

Neuro Symptoms

If you have neuro symptoms with B12 deficiency, NICE CKS link above suggests doctors should contact a haematologist.

If you have neuro symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance problems have you been referred to a neurologist?

It's vital in my opinion to get correct level of treatment. untreated or under treated B12 deficiency can lead to further deterioration.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

I found out that understanding of b12 deficiency can be limited amongst some UK doctors, Gps and specialists. It pays , in my opinion, to do some B12 homework in case doctors haven't.

More B12 info in pinned posts on this forum.

I am not medically trained.

[Kyla665 in reply to Sleepybunny]

To answer your questions:

GP doesn't know what is causing the B12 deficiency

I have not had thorough Coeliac blood tests

GP has not referred me to a gastro-enterologist

Tested negative for intrinsic factor antibodies

Negative for H Pylori infection in 2015

I have not been referred to a neurologist

Thanks

[Sleepybunny in reply to Kyla665]

Hi again,

"Tested negative for intrinsic factor antibodies"

I hope your GP is aware that it is possible to have Antibody Negative PA. This is mentioned in BSH Cobalamin and Folate Guidelines link and flowchart link in my post above.

Antibody Negative PA is also mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

I hope your GP will carry out Coeliac tests. If they are reluctant, might be worth showing them NICE guidelines on Coeliac disease.

"GP has not referred me to a gastro-enterologist"

"not been referred to a neurologist"

Section 1.3 in NICE guidelines on Coeliac disease is about which patients should be referred to gastro-enterologist.

It is your right to request referrals but GP does not have to agree. I used to put referral requests in a brief, polite letter to GP along with evidence eg symptoms, extracts from documents etc that supported my request.