Lots of questions

[Lifetimer]

Hi there. I have been diagnosed with PA last week - but just wanted to check whether anybody had been diagnosed incorrectly? The only symptoms I have are extreme fatigue, mouth ulcers that wouldnt heal and a genetic link to PA. I have my first B12 shot tomorrow - and it appears that I am only having these every month initially - and then will go to three monthly. Is that normal - as after reading thru this site, it appears that I should be having loading shots? I don't know what my actual readings were etc, I will get these tomorrow when i see the Nurse. I am in Australia, so maybe they do it differently here, Thanks

[fibro10]

Yes hun i had mine over christmas and new year 6 loading shots then was given a appointment for april but doctors rang and said i dont need them .I have mouth uncers and sore mouth , fatige, pains all over what is said to be fibro 💜

[Paolini_Teracini]

It seems there is some reluctance to give loading doses, despite being recommended, having no side effects, and being very low cost. You are fortunate that they're even considering PA as so many of us had to fight to get that far! It may help to print out the guidelines shown on this site, or at least ask why a loading dose is not being given straight away. Sadly many GP's will brush this evidence aside. I would keep a good record of your tiredness levels and mouth ulcers. Have a look at the other symptoms and make sure you hadn't got used to some of them without noticing. I would also recommend doing your own Romberg and tandem gait test (Youtube them) just in case they forgot to check those. Get someone to film you on their phone and then you have a baseline record.

[Lisahelen in reply to Paolini_Teracini]

I can only agree, but you need to film on your phone not someone elses that way you will definitely have it with you when you visit gp. If you can print off the list of symptoms and tick each one you have, as Paolini says many of us get used to symptoms and dont make a connection until listed(myself included).

With regard to incorrect diagnosis, probably a fair few have had that prior to b12d showing on a blood test.

[Gambit62 Administrator]

Protocols do vary - quite possible that that is the usual protocol in Australia - the one that comes up most commonly here is the UK protocol as published by the BCSH and NICE

bcshguidelines.com/document...

possible that your GP in Australia might be prepared to listen to the recommendations in that.

There is probably a standard setting body in Australia - or it could be by state - and there should be details of the treatment you should be receiving there.

If you are in Australia then you can actually get injectable B12 over the counter though you may have to argue for it - seems as if small pharmacies are more likely to do the right thing on this than some of the larger ones if I read a recent post correctly.

People vary a lot in what symptoms they exhibit first and how long a deficiency actually takes to develop - they also vary a lot in the levels of B12 that they need.

It can also take a while for the B12 to work ... and you need to keep any eye on your folate levels as these can also drop and then you aren't able to process the B12.

[Lifetimer]

Thankyou so much for your speedy responses. I will do some additional investigations over the next few days, with the first step being to get my actual blood test results and also to ask the nurse about the loading shots. Once again, thanks heaps.

[BethattheBeach]

I am in Australia and had to ask for more frequent loading doses after only one was provided. It did take me 9 months to convince the Dr that my symptoms were returning - the wait for the 3 months was like torture.

My diagnosis also came out of the blue - I was just very anxious and sad after a loss in the family - but I and my husband are astounded at the change in my health after a year of treatment. So, be happy you have found out! I had vague symptoms for about 15 years and so wish I could get those years back.

I can only repeat earlier advice - keep a detailed list of symptoms and how they respond. I had no idea so many things were B12 connected - sleep, rashes, pain in feet; it goes on and on. So, make sure you print off a check list and go 'armed' ready to get the best treatment.

Have you had a check for Antibodies to Gastric Parietal Cell and Intrinsic Factor? Also, an endoscopy will assess the state of your ileum which was how my diagnosis was confirmed.

BTW, there is an active closed Pernicious Anaemia Support Group Australian Facebook page you are able to join.

Good luck.

[Lifetimer in reply to BethattheBeach]

Hi there. No, all i have had done is a vitamin B12 and folate study, as well as iron. Only thing that was below required levels were the b12. I am really lucky because the only symptom that i know of that i have had is the fatigue but all good. Happy to keep taking the shots. They wont harm me, so all good.

[Gambit62 Administrator]

Also wanted to add that the body is usually very good at recycling B12 and stores significant amounts in the liver - releasing it in bile for re-absorption in the ileum. If you have an absorption problem this will stop working over time - a bucket losing water through a hole. However, the whole can be bigger in some people than in others. Result is that a full blown deficiency may take years and even decades to actually happen. However, the symptoms tend to start snowballing as the deficiency takes hold.

[Lifetimer]

Thanks once again for the replies. I have also found the Australian FB PA page which will be helpful. I had my first jab today and got a copy of my test results. My vitamin B12 is 130, whereas it should be 170 and over, and my active B12 is 31, whereas it should be 35. The results also state that 'low active b12 is consistent with B12 deficiency. PA is the"most likely cause. Other causes include dietary factors and malabsorption". I asked the Nurse whether it was a def. confirmed diagnosis and she said well, it is in your family so it is likely that PA is the cause. So basically, as soon as you have low B12 and have a family history, they just assume you have PA. My diet is crap as - but my iron levels were normal etc so maybe i do have it. Who knows. Anyway, happy to keep getting the jabs - it may be that as some of you guys have mentioned, i have managed to catch it before I was totally depleted of B12 and before I started getting the major symptoms that appear to go along with this lovely thing.