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Hormones, fertility and periods while B12 deficient

fireflymairi profile image
8 Replies

Hi all, first post here! 👋

I’m currently in the early stages of treatment for B12 deficiency and likely pernicious anemia diagnosis. I just turned 40 and my symptoms have been getting steadily worse over the last few years. I’ve also been trying to conceive since I was about 36, to no avail.

I’ve had progressively shorter cycles (24 days instead of 28 days) and longer periods, with mostly spotting for the first 5 days or so and going for around 10-12 days. Fairly light overall though.

I’ve read that B12 deficiency can interfere with hormones. I’ve actually been diagnosed with oestrogen dominance a few years ago.

Just wanting to hear from any ladies out there who have experienced any infertility issues, hormone imbalances, disturbances in cycle/period length - and did any of this resolve with B12 supplementation?

Really hoping that my issues can be corrected before it’s too late!

Thank you.

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8 Replies
Nackapan profile image
Nackapan

I haven't experienced what you are going through.I do hope the b12 and getting your body back into balance will help you conceive .

Get everything checked and folate is very important .

Vit D, iron panel, ferritin

400mcg advised daily of folic acid fo women of child bearing age

Hooe it all works out for you.

fireflymairi profile image
fireflymairi in reply toNackapan

Thank you for your reply!

I believe my Vit D, iron and folate are fine, but I am picking up all my blood test results tomorrow so I can check then.

Sleepybunny profile image
Sleepybunny

Hi,

I hope you get the treatment you need and good luck in the future.

Are you getting B12 injections?

There may be some details in links below that could be upsetting.

B12 deficiency and infertility

b12deficiency.info/infertil...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

Pernicious Anaemia is a specific auto immune condition that can lead to B12 deficiency.

In some countries the term Pernicious Anaemia is used to mean B12 deficiency.

Link about difference between PA and B12 deficiency

pernicious-anaemia-society....

I am not medically trained.

fireflymairi profile image
fireflymairi in reply toSleepybunny

Thank you for the links. It does seem that Vit B12 deficiency does affect fertility and it would make sense in my case.

My doctor started me on monthly injections of B12 and I have had two so far. Seems like I get about a week of symptom reduction from these.

I’m chasing an actual diagnosis of PA so I can get a more aggressive treatment schedule and get better more quickly.

I feel like the sands are running through the hourglass so quickly! 😬 ⌛️

Nackapan profile image
Nackapan in reply tofireflymairi

Did you not get loading doses?

Sleepybunny profile image
Sleepybunny in reply toNackapan

Like Nackapan I am surprised if your doctor did not give you loading doses.

This is a series of B12 injections given close together to try to get B12 levels up quickly.

In UK, BNF (British National Formulary) suggests

for those with B12 deficiency without neuro symptoms

6 B12 loading injections over 2 weeks followed by a maintenance injection every 2 - 3 months

For those with B12 deficiency WITH neuro symptoms,

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

Do you mind me asking which country you are in?

It might help people to post more relevant info.

Can also be worth including name of country in title of post to attract attention from others in the same country.

Patterns of treatment vary between countries and the type of B12 used can vary.

For example in US, I think injections of cyanocobalamin are used more often whereas in the UK NHS normally uses hydroxocobalamin injections.

There are also other forms of B12 including adenosylcobalamin and methylcobalamin. Some people find they respond better to a particular form of B12.

B12 books I found useful

Fertility and pregnancy issues are mentioned in these books.

Some details and some of the case histories may be upsetting to read.

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

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

BNF treatment info in book is out of date.

"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".

Tests for Pernicious Anaemia

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

I'm in UK and it's my impression from personal experience and the forum that there are many UK doctors who are not aware that it is possible to have Antibody Negative PA ( where PA test results are negative).

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

BSH Cobalamin and Folate Guidelines (UK document)

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

Summary of above document (from PAS website)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

fireflymairi profile image
fireflymairi in reply toSleepybunny

Thank you for this - I have started a new post with my blood test results and some questions.

I'm in Australia so yes I can buy hydroxocobalamin over the counter (or order online at least).

Polaris profile image
Polaris

Below is a summary of BMJ research article (summary only) and UKNEQAS which both suggest treating neurological symptoms, as there is no reliable test:

bmj.com/content/349/bmj.g5226

pernicious-anaemia-society....

This is an interesting article by a fellow Australian, as your symptoms do suggest B12 deficiency, especially as it's in your family (three on the maternal side of our family have B12def/PA and thyroid disease and one member has confirmed deficiency by gene testing). Difficulty conceiving is also a symptom

martinecotton.medium.com/18...

Best wishes for more treatment fireflymairie.

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