Pernicious anemia and pregnancy

[Kelly1906]

Hi I was diagnosed with PA a year ago and I have suffered multiple losses I am undergoing fertility treatment but I am worried that it's something else that's causing the miscarriages.. My question is has any ladies who suffer with PA gone on to have a full term pregnancy? Any advice would be great. Thanks

[Sleepybunny]

Hi,

I'm so sorry to hear about your loss.

I am not medically trained. Some of the info I've linked to may be upsetting to read.

Have you considered contacting PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries. PAS can pass on useful info and in some cases can intervene on behalf of PAS members.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

PAS website has library section with leaflets/articles eg

" Vitamin B12 Deficiency in Pregnancy and Newborns Leaflet " and

"An Update for Medical Professionals: Diagnosis and Treatment"

You would need to be a PAS member to access these leaflets.

pernicious-anaemia-society....

UK PA treatment

Is your PA being treated adequately?

How often are you getting B12 injections?

Recommended UK treatment for B12 deficiency without neurological symptoms is....

6 B12 loading jabs over 2 weeks then a jab every 2 or 3 months.

Recommended UK treatment for B12 deficiency WITH neurological symptoms is....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Do you have any neurological symptoms?

See links to UK B12 documents further down post.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 13 in above link is about fertility.

Point 14 is about pregnancy.

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

There may be relevant stories on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

I think pregnancy is mentioned in all of them.

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

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

B12 and Pregnancy

b12deficiency.info/b12-and-...

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/weten...

Auto Immune conditions

PA is an auto immune condition. Having one auto immune condition can increase the chances of another one developing.

Has your doctor excluded the possibility of other auto immune conditions eg Coeliac disease, lupus, Hughes Syndrome ( also known as Antiphospholipid Syndrome APS), thyroid problems etc.

I have read that Hughes Syndrome APS and Coeliac disease can be associated with miscarriage.

coeliac.org.uk/healthcare-p...

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Hughes Syndrome (APS) and Lupus

lupus.org.uk/what-is-lupus

aps-support.org.uk/about-ap...

Thyroid UK

thyroiduk.org/

Thyroid problems and pregnancy loss

ncbi.nlm.nih.gov/pmc/articl...

Might be worth putting any thyroid results on the Thyroid UK forum on HU.

Other B12 info

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 documents

If you're in UK I suggest reading these documents. Some mention pregnancy.

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...

Do you get copies of all your blood test results?

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-...

Iron Studies

labtestsonline.org.uk/tests...

Nitrous Oxide

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

Help for GP

PAS has a section on website for health professionals. They can join PAS for free as associate members.

pernicious-anaemia-society....

[wedgewood]

The thing is you don’t suffer with P.A.if you get the correct treatment . I think that I remember reading in the first book on P.A. that our chairman , Martin Hooper wrote , he mentioned a female doctor who had PA , and who failed to get pregnant until she was treated correctly .I believe that infertility can be a symptom of B12 deficiency / Pernicious Anaemia. I hope that your are getting enough treatment with B12 injections . Don’t forget that a folic acid supplement is also necessary. Very best wishes .

[Kelly1906 in reply to wedgewood]

Hi thank you for your reply I am getting my b12 injections every 3 months I also have a under active thyroid which I believe may cause fetal loss my gp increased my levothyroxine a year ago as I thought the loss was caused by that but after undergoing several blood tests I was told that I had PA and at the beginning it was 168 and after 5 injections only increased to 330.. It's all still new to me but the main worry is that I've suffered 5 miscarriages and I don't know what the main cause is. Thank you for your response

[Sleepybunny in reply to Kelly1906]

Hi again,

"I am getting my b12 injections every 3 months"

Does your GP know that guidance on B12 treatment has changed recently. Your doctor may be using an out of date copy of BNF book. See BNF link in my post above.

PAS news item on recent BNF changes to UK B12 deficiency treatment

pernicious-anaemia-society....

My understanding is that UK patients with neurological symptoms should have B12 maintenance jabs every 2 months.

Neurological symptoms can include migraine, tremors, tingling, pins and needles, numbness, balance problems, memory problems, brainfog, word finding difficulties, restless legs syndrome. There are many other neuro symptoms.

"and after 5 injections only increased to 330."

UK patients with neuro symptoms are supposed to have every other day loading jabs until symptoms stop improving, at start of treatment. There is no time limit in national guidelines over how long these every other day jabs can continue so they could continue for weeks even months.

When you mentioned 5 injections, do you mean you had 5 loading injections over 2 weeks at start of treatment?

I wondered if you are in Gloucestershire as most UK areas give 6 loading jabs at start of treatment and Gloucestershire only gives 5.

If you are in Gloucestershire, be aware that Gloucestershire's local guidelines on treating B12 deficiency were not changed after the BSH Cobalamin and Folate Guidelines were published in 2014.

There is a PAS support group in Gloucestershire.