Hi all, 42 year old woman, diagnosed today with PA. Feeling a wee bit overwhelmed by it all. As I have turned 40 a couple of years ago, I said to myself I was going to get my bloods done routinely at the start of every year. Got them done early this year and all seemed well. Like a lot of other people I have a busy enough life, have 2 young kids, work full time and study part time. Was feeling tired coming up to my exams in June but was not surprised why!! After my exams I got a bit of a dose and it took a couple of weeks to clear up but later after that I was still feeling very tired and lacking energy. Went to the doctors and explained my case as I had got bloods done a few months early he said he would do some that hadn’t been done. Results came back and was told I was deficient in B12. That I would need a course of 5 injections over 2 weeks and then to take a high dose B12 for 3 months and come back to get blood done again. At my last bloods a couple of weeks ago they sent for a Pernicious Anemia screening test and sure enough it showed I have that. Have to get injections every 3 months. Don’t know if it’s 1 injection or a course of 5 again and every 3 months after that. Got that much of a shock when the doctor told me I had it. I was hoping she would say I didn’t have it and that I was just bad at eating B12 foods.
As I said just feeling a wee bit overwhelmed because up until now I always felt I was quite a healthy person.
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Trishq24
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Thanks for telling me about the ferritin, iron and vit D, might get a good overall multi vit aswell. I will ask at my injections next week. Thanks again.
Welcome to the forum . You have come to the right place.. Great that your Pernicious Anaemia has been diagnosed early. You have no need to worry.. You just need sufficient B12 injections that will keep your PA symptoms at bay . It’s good to take say a 400 mcg of folic acid daily as it works with B12 . You can always come to the forum to get advice from the “old hands” on here !
I find it interesting and informative to read lots of questions and answers on this forum . I’m so pleased that you have joined us . Best wishes .
Sorry you’re overwhelmed! It’s a journey to learn everything there is to know about PA. I wish I would have known when I was 42. my whole life I was gaslighted by Dr’s that told me to get more rest and take iron. It was because of my persistence that I discovered my health issues. Knowledge is power!! You’ll be better than ever once you get the right protocol
You might also find that some of the things you ignored as not important/forgot to tell the GP about were actually symptoms starting - and these will improve too !
Some people experience a worsening of symptoms before the improvement starts, but do ask on here about anything concerning you.
Also, even if you are lucky enough to get some obvious results straight away, you can find that you get spots, usually around hairline, on face or neck .... usually these go quite soon after you start getting your injections - and I think it's worth putting up with that temporarily, if you are improving generally. I didn't mind them too much - seemed like a sure sign that something was happening !
This can take a while, so I hope they have caught this early for you. Please ensure that you get a printout of the PA result (it was probably an Intrinsic Factor Antibody (IFab) test, giving a positive result. It is worth keeping a personal record of this as this is proof that you have Pernicious Anaemia (PA) - which to date has no cure and treatment is to control symptoms. Over the years, my IFab has been tested three times - always with a negative result. Because someone with PA has only a 40-60% chance of a positive result, it is a good thing that you have had a diagnosis from your first test.
Yes, it is a shock at first and overwhelming, but there are many very helpful people on this forum who can give advice, useful links and information. Don't feel on your own with this. Take it easy, get support from friends and family - and I hope you did well in your exams !
Injections once per 3 months is not often enough for most of us with PA. I have my husband give me an injection once per week because I can get symptoms back in 3 weeks. The math for computing the 3 months was based on a bogus assumption that we can recycle the B12 back into our bodies like people without PA can. You may be very healthy but you mention that you felt tired. A big plus of getting your diagnosis is that the B12 will get rid of the fatigue. You can have a totally normal life as long as you get enough B12. I am 63 now and still playing ice hockey 5 times per week (often with men). I also love aerobic dance classes. This week I am skiing at Whistler. It took a couple of years to find out I had PA and in the meanwhile I had gotten to where I was sleeping 16 hours per day. I hope you can feel reassured instead of overwhelmed since this condition is so easily treated (as long as you can convince the doctor to give you enough B12). Many people don't get enough B12 from the health care system and end up taking it into their own hands. I am lucky to live in Canada where injectable B12 is available over the counter without a prescription so I can get as much as I need. Very best wishes!
Thanks everyone so much. I suppose I should be happy that I got the diagnosis so quick seeing as I only went to the doctors and got my initial bloods done the end of July and got my second bloods and screening test done a couple of weeks ago.
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