PA and menopause.: I had a gastric... - Pernicious Anaemi...

Pernicious Anaemia Society

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PA and menopause.

Pixiefae profile image
10 Replies

I had a gastric surgery 5 years ago and as such was told I needed b12 for life - my new GP however keeps refusing injections and told me I was fine.

Recently found out I've gone through a early menopause at the age of 37. Reaserching I see this could be related! I have symptoms upon symptoms so ice purchased some vitb12 to self medicate. Has anyone else had early menopause due to PA? I originally thought it was something to do with my ovarian tumour (I'm under investigation for ovarian cancer) now I'm not so sure!

I hadn't looked into this condition till I saw a article on it and was shocked that it can effect you so much, I just thought it made you a bit fatigued! How wrong was I!!!! Hopefully now I can get on top of these symptoms and figure out what is menopause, PA or tumour related!

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Pixiefae profile image
Pixiefae
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10 Replies
clivealive profile image
clivealiveForum Support

Hi Pixiefae I am absolutely devastated to read that your "new GP however keeps refusing injections and told me I was fine."

Presumably you've been receiving B12 injections during the five years since your surgery so if your "new GP" did a serum B12 test it was bound to "be fine".

I'm not a medically qualified person but know from experience that gastric surgery is one of the main causes for B12 Deficiency and it was thirteen years before I got diagnosed with P.A. and I wish I had been told at the time (as you correctly were) that I would need B12 for life.

If it's not too personal, what kind of gastric surgery did you have done and what B12 deficiency symptoms are you having?

Pixiefae profile image
Pixiefae in reply toclivealive

I had a gastric bypass with removal of duodenum and some intestines.

For the first 2 years I had the injections regularly and then I moved - they did blood tests and kept saying nope wasn't low enough. Although I was feeling really poorly.

I managed to persuade the Gp to re test the end of last year and it was low but they now won't give me injections as I'm having tests for cancer. (Why I don't know)

Symptoms wise -

Extreme fatigue

Breathlessness

Sore red tounge

Splits the side of my mouth

Mouth ulcers

Headaches

Tummy problems and pain

Depression

Sleep issues

clivealive profile image
clivealiveForum Support in reply toPixiefae

Wow Pixiefae if you click on

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

I pulled out the following:

Thus they conducted a review of trials involving the prevention and management of vitamin B12 deficiency in patients having bariatric surgery.

Overall, they found that intramuscular B12 continues to be the "gold standard" of therapy for vitamin B12 deficiency in these patients, at a typical dose of 1,000 mcg per months..

Hope this helps

Pixiefae profile image
Pixiefae in reply toclivealive

Thank you really helpful !

Sleepybunny profile image
Sleepybunny

"new GP however keeps refusing injections"

So sorry to hear this. I'd urge you to contact the PAS (Pernicious Anaemia Society) soon. The PAS can sometimes intervene on behalf of members. Lifetime membership costs £20. Phone messages can be left. It may take a few days to get a response.

pernicious-anaemia-society.... 01656 769 717

The chair of the PAS, Martyn Hooper, has a blog and there are stories on there, of members who have had their injections stopped and how the PAS can help.

martynhooper.com/2016/04/24...

Gambit62 profile image
Gambit62Administrator

I'm really sorry that you are suffering so much because of medical ignorance.

Unfortunately a lot of GPs act under the assumption that B12 is a blood disorder (and a lot of the guidelines out there really don't help with dispelling that myth). Whilst B12 deficiency can cause blood disorders these are symptoms. The place where B12 deficiency works is at the cell level and the serum B12 tells you absolutely nothing about what is going on at the cell level.

I hope that you will contact the PAS and that they are able to help, but in case this is a list of references that another member of this forum put together on things related to B12 and not going on numbers in serum B12 test

frankhollis.com/temp/Summar...

Looby profile image
Looby

Hello P....seems as tho your new GP has not bothered to read back on your notes!

My hubby has regular B12 injections, and his gastric surgery was over 10 years ago. He becomes really tired when one is due.

We may even have the same GP...as I notice you live less than 15 miles from me. I worked as a Med Sec and then in Pharmacies in Newark before early retirement due to Fibromyalgia and spinal injury back in 2008.

So...if I can help in any way, please do post on here. I do not check for msgs every day....and just now am slowly recovering from a U.T.infection.

Looby 👌

.

Pixiefae profile image
Pixiefae in reply toLooby

Thank you Looby X

I'm in Gainsborough at the moment (looking to move to Boston for family support)

Looby profile image
Looby in reply toPixiefae

My husband 's daughter and partner also live in Gainsborough. Hope you find the strength and means to make the move, as having close family is really important.

I am sitting in hospital car park right now, waiting for him while he is having eye injection ( he has diabetes). Have had my fill of hospitals this month, and do not want to "catch" anything else!!

Weirdly, I like rain....having lived in Oz....where we sometimes went for weeks without any.

Looby 🌈

cdragin profile image
cdragin

Interesting. I was diagnosed with PA at 54, although my menopause was at a typical age. But my mother went through early menopause...probably around 40 y.o. And I know she was on B12 shots later in life (although that is not unusual for people in their 80s).

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