Newly diagnosed

[Drimmer]

Hello All, I have been diagnosed with PA the one where my body attacks the intrinsic factor. This is all new to me. I am 35 and finally all of my symptoms seem to make sense. My b12 is a 309 which seems to be at the lower end yet according to my blood results isn’t low exactly. My doctor just said all I need is injections once a month. But I have so many symptoms and wonder if she is being conservative because of my numbers?

I get confused easily. Can seem to text properly it’s like my fingers always press the wrong keys. I have balance issues, extreme brain fog as long as I can remember. Pins and needles. Exhausted.

Do I need to see a specialist?

And also I have endometriosis as well. Are they linked? I also see people talking about folate do I need that as well? So my questions. Please help.

[clivealive Forum Support]

Hi Drimmer are you in the U.K? Your doctor saying you need injections every month suggests perhaps you are not.

Protocols for treating P.A. differ in different countries.

If you are in the U.K. you should be given "loading doses" of Vitamin B12 on alternate days for two weeks or until there is no further improvement in the symptoms and then given maintenance injections every two/three months for the rest of your life.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

[Drimmer in reply to clivealive]

Thanks for the info!

[Drimmer]

No I am in the states. Does this mean how we treat it here is incorrect in your opinion? Do you know why they are treated differently? Thanks for the help

[Gambit62 Administrator in reply to Drimmer]

there is no standardised protocol for treatment in the US. The difference between monthly and 2-3 months for maintenance comes from using different types of cobalamin - cyanocobalamin used in US tends not to be retained as long as hydroxocobalamin used in UK - though there is huge personal variation in that.

If you have neurological symptoms then I'd suggest going back to doctor and asking for a loading shot regime (eg weekly for a month or so, or more frequently until your symptoms stop improving).

There isn't a specialism for B12 because the impact of deficiency/absorption problems cuts across the silos the medical profession generally uses to define specialisms.

It will take a while anyway for symptoms due to damage whilst you have been deficient to improve because the damage will need to repair.

AAFP article on treating B12 deficiency

aafp.org/afp/2017/0915/p384...

[Drimmer in reply to Gambit62]

Thank you!

[Sleepybunny]

Hi,

I wrote a detailed reply on another thread in next link.

healthunlocked.com/pasoc/po...

It may have some useful info (some will be UK specific).

[Drimmer in reply to Sleepybunny]

Thanks!

[wedgewood]

Endometriosis isn’t an autoimmune condition , but is linked to having an autoimmune condition , which Pernicious Anaemia is . Auto immune conditions ( of which there are many) , seldom come alone . The most common being thyroid problems .with P.A.. I have P.A. with Rheumatoid Arthritis .

[JanD236 in reply to wedgewood]

I didn’t know that wedgewood. I also had endometriosis so that’s interesting.

[Thompson36 in reply to JanD236]

Me too, hysterectomy last Feb. I’m convinced I need B12 but GP just won’t listen. I became ill on holiday in September and they said it was B12 and magnesium deficiency. GP tested bloods in October which I’ve just got a copy of which are still suggesting an issue. I’ve had dizzy spells, brain fog and severe pain in one temple for the last week that hasn’t responded to any medication prescribed. So fed up of being on the merry go round and not getting anywhere 😥

[Drimmer in reply to Thompson36]

Can you go to another doctor? My doctor is young and when I suggested checking for it she had no problem

[Drimmer in reply to wedgewood]

Thank you!

[Dkc729]

Hi Drimmer. I too am in the states. I was diagnosed by a Hematologist. They seem to know a lot more than any other dr that I’ve seen since being diagnosed 1 1/2 years ago. I had very similar symptoms and had endometriosis as well. I self inject weekly. I tried monthly injections but couldn’t get past 2 weeks before feeling like a truck ran me over. Everyone with PA has different symptoms and experiences so you need to do what works for you. I wish you the best. You’re lucky you found out at a younger age. I was 53 when diagnosed. Took years of going to drs and being misdiagnosed. Good luck to you.

[Drimmer]

Thank you! Good luck to you as well. I might see a specialist as well I think since I have Endo as well like you.