I can't begin to thank everyone who has responded to my original post. The comments have kind of kick started whatever is left of my brain!I am definitely in a better place than before I posted and that's without any medical intervention. But I do believe that having people taking you seriously does have a positive impact on your overall health.
I am though struggling with all the comments. I am trying to reply to everyone as I worry that I will upset you if I don't reply and that would make me feel really bad. But that's me! I always want to make other people happy even if I'm not. I'm a serious underachiever and need to help others to succeed where I can't!
So if I haven't replied, I have missed your comment. I am finding this confusing as comments seem to come in all over the place and I'm losing my way. So please take this as my reply. Thanks for replying and thanks for understanding.
I think I should change my name to exhausted and overwhelmed!!
JaneHope, it is a very challenging time you are going through at the moment, I too have not been responding to many messages for the same reason as what you believe could be you user name, "exhausted and overwhelmed". I think everyone on this forum could tag themselves with that same name especially when not properly dosed up with B12 and the cofactors. Nacpan is correct in that we are all here to support each other as our own experiences reveal that it is a complex problem not well understood nor properly treated by most of the medical profession. I am also grateful for all responses my posts have received and will possibly get back to people after my next consult in 2 weeks time. The rollercoaster that I have been on with my health has been challenging as I am sure has been the case for you and us all.
Exhausted and overwhelmed is what I have been for so many years and since being diagnosed with PA/AIG, I have had snippets of good health when been sufficiently dosed with B12. It was a 'light at the tunnel moment' knowing why I had been so unwell and knowing how to correct it. I got diagnosed mid September last year.
Then comes the challenges with the doses provided to you are either accidently or misjudgingly reduced/removed come, you crash and you go back to step 1, "exhausted and overwhelmed". It is clear that after initial loading doses that 3 monthly injections are not going to be sufficient for me. I am in Australia and that is what is in the guidelines, in the US it is monthly, some of Europe, monthly also, In NZ it is 2 monthly. Nothing is standard around the world for any cause of B12 absorption issues, nor what is in any guideline will be sufficient for all B12 absorption problems that present in individuals.
I read your previous post and being confused is absolutely a common symptom of being underdosed with B12 which should improve with B12 shots as with other troubling symptoms. Perhaps your GP who first started the shots and reinstated them could be your ally with keeping you shots up at an interval that you require because they are aware that this has been an issue for you over the years and will most likely continue to be so, I hope so.
I have a doctor who was initially great, then not so great and possibly will prove great again as when I crashed badly during my first lot of 3 monthly injections with no prompting said "despite your bloods looking okay, we will treat your symptoms and give you monthly injections, 3 monthly injections are a guideline only" I was happily stunned and will continue with her. She doesn't yet know of the 1 to 2 Vitamin B12 Activated 1200mcg sublingual's I was taking most days, but still crashed, that's going to be in interesting interaction. There are some responsive GP's out there, I hope you have one that continues to be so, if not, keep shopping for one that is willing to work with you and not just follow guidelines.
I was misdiagnosed 2 years prior with symptoms I had for 3 years through COVID, so it was a total of 5 years that I was probably preciously low with B12, so surviving for a long time is possible, although, it is just surviving, not being well.
As you see, I can waffle on too, but it helps everyone to understand exactly what your current position is and better help guide you while also confirming that none of us are crazy because we are or have gone through a similar set of circumstances that is often not adequately understood and supported by the medical profession or our loved ones.
together ..the power of being believed and understood is definitely a positive motivation …it’s been so hard to find a positive motivation for a long time to take the next steps until I found this forum..being in this loop is empowering and relieving just a little stress is relieving that awful feeling of pressure exploding and no where to turn ..thankyou everyone
I have just realised I am real muddled with where I am on the forum even where I should write …but we all have to start somewhere …I’m not going to beat myself up over it as I do regularly in life …but I think I should have wrote a new post rather than on previous posts … sorry everyone …it’s just a lovely feeling to be involved …I will get there
Hey, I mucked up too. I am about to post again regarding some information I found, have a look at this article by Mayo Clinic. mcpiqojournal.org/article/S...
It talks about possible scenarios of why B12 could be an issue without being IFA positive, I wasn't, but was positive to partial cell antibodies which got me in the official loop to get a scope and definitive diagnosis, which happened. I hope you were tested for PCA as it is suggested a better marker.
Jane, Your gratitude is apparent and sincere. There are several times, on this forum and others, that I have spent a lot of time responding to people with very specific information. I am happy to do it as I know that I learned from people here and also through my own research and the school of hard knocks. I never do it for thank yous but I just said to my husband this morning that sometimes I put a lot into my attempts to help, only to never hear from the recipient at all. I think a blanket statement of gratitude adequately acknowledges peoples' efforts. No one wants you to be any more exhausted and overwhelmed than you already are. Please let this go and consider your gratitude more than enough.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Frightened of B12 injection side effects 
Being passed from pillar to post - any ideas for expediting diagnosis and treatment?
Peri-menopause & B12
Posting etiquette / reminder about not hijacking people's posts 
