I was diagnosed with pernicious anemia in 2019. I have been through the ringer!!! Mentally, physically!! Ups and downs and all arounds, I'm sick of it. I am sick and tired of being sick and tired! The emotional roller coaster alone from this disease is something you would not even wish on your enemy. Not to mention all the physical that comes along with it. On top of that trying to convince doctors and people that it's from PA. It's good to come to this site for clarity and support and I thank you guys but honestly I am so sick of these so weird symptoms I can't even tell ya. A few days ago those symptoms came back when I am doing nothing and this rush of adrenaline comes over your body and have you so nervous and unsure of things you could use to do even with your eyes closed. Like I said before it's like your body is responding to a bear or something chasing you. I know it sounds nuts but it's my reality when PA goes haywire. Usually when this happens It's out the blue, unexplainable like a lot of things PA brought to this party. Okay guys.. yeah.. I guess, I'm the Debbie DOWNER for the Holidays. If you guys only knew how I was before PA. So so positive of a person and believe it or not happy and lifted everybody else up. ANYWAY thanks for the vent, I guess I should take a nap or timeout or something! Take care
PA, yeah....SICK OF IT: I was diagnosed... - Pernicious Anaemi...
PA, yeah....SICK OF IT
Yes that 'fight of flight ' feeling horrid.Our autonomic systems geg affected.
Good to vent .
I have 'new' friends that dont know me any different .
Older friends find it very difficult to get
Some dismissive and think i should be over it now.
Nog trying to understand it.
Ex friends!!!
It is so difficult to have your life turned upside down and to feel so bad all the time. I, like so many others on here, was the same for years; this year I consulted with a doctor who, at last, listened and understood. My new injection regime and supplements have worked! I can now socialise again, my symptoms have improved so much; I am even able to contemplate part time work and had a job interview a couple of days ago.Be kind to yourself; you can get through this, it just takes time to find out what works best for you and how to get help to achieve that. You are not alone with this; it is a journey we take together.
Noti1, I am so happy for you! You've come a long way baby, as they say😊 I'm praying you get that job too! Gives me hope
This THING is so damaging to our confidence that getting back into the jobs market really is a massive step forward. Well done you. 🙂🙏
Oh dear! It's good to feel 'sick of it' but you're still here. If you hadn't been diagnosed back in 2019, it would now have been a very different story [that's the 'Pernicious' bit talking!] Yes, you might have changed but it sounds to me that there's 'plenty left' to carry on with...
Keep fighting, and have a good Christmas too.
Best wishes from the North of England!
Totally hear you and empathise with your situation!! I too was diagnosed with PA in 2018/19 and it’s a long journey for me too!!
Reflecting in hindsight, I have learned so much about this insidious disease that it’s made me stronger and more resilient, I don’t take any crap from anyone especially from those doctors who told me that it’s all in my head all the symptoms I was experiencing in my early years of PA.
I too was sick of being sick, with every new symptom I questioned whether it was PA related or something else.
Healing and recovery takes time, many years in fact, to heal the damage caused by PA. If I didn’t have the wonderful people on this forum, I may not have been successful with reversing many of my symptoms. With the many helpful resources provided here, I am able to live a better quality of life.
I sincerely hope that you too can eventually find good health, since we all have to live with PA. I wish you all the best with your healing journey.
Merry Christmas and may 2025 bring you good health and prosperity.🙏🎄✝️
Merry Christmas GoneWithTheWind and I'm wishing you a wonderful blessed New Year! Thank you!
Yup. Me too. I seem to function every other day for half a day. Can't be arsed about Christmas!
I appreciate you venting bc I've been feeling like that lately. Nobody understands until it's experienced. You want your body to comply but it's as if it's on a different planet.
I repeat to myself everyday ' Fight' ' you will get over this' . I know PA is a lifetime but I try not to remind myself of the negative. Support groups help bc you don't feel alone. Most doctors are clueless and you have to really do your own research to stay informed.
Wishing you the best and you're not alone!!
Hi,
I hope you have a peaceful time over the festive period.
"I am sick and tired of being sick and tired!"
I think many of us can relate to your comment and the effort of coping with a lack of understanding from doctors.
Have you considered joining PAS (Pernicious Anaemia Society)?
They are based in Wales, UK but have overseas members.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
There are two PAS support groups in US and PAS are always keen to hear from others wanting to set up new support groups. Most meet online.
They can be good places to swap information and get support.
pernicious-anaemia-society....
PAS have some Personal Stories from PAS members in US on their website and are always keen to hear from others wanting to post their stories.
pernicious-anaemia-society....
I wondered if you're getting enough B12.
I'm in UK and many UK forum members report that they need far more B12 than NHS will give.
Have your doctors checked your folate, iron and Vitamin D levels?
Many forum members report deficiencies in these as well as B12.
It's also common to report thyroid problems as well. Have you had thyroid tests?
Thyroid UK forum on HU is a good place to ask thyroid questions.
Some other B12 websites
B12info.com
Run by a UK campaigner on B12 deficiency issues.
Has lots of useful info and interesting blog posts.
B12 Awareness (US website)
Set up by Sally Pacholok, US campaigner on B12 deficiency issues.
She has some online articles and videos.
Stichting B12 Tekort (Dutch B12 website with English articles)
stichtingb12tekort.nl/english/
Help for doctors
Maybe your doctors might be interested in these.
1) PAS have a page for health professionals.
Some info might be UK specific.
pernicious-anaemia-society....
Health professionals from across world can join PAS as affiliate healthcare members.
PAS have webinars that you and your doctors might find interesting.
pernicious-anaemia-society....
2) Club B12 is a group of doctors and researchers from across the world who are looking into B12.
They have regular zoom meetings and have hosted conferences.
3) Good articles to pass to GP
B. Wolffenbuttel wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org ( a UK charity) organises interesting online talks about B12 deficiency
I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.
I improved for at least eight years running after treatment started but I need far more B12 than NHS will give me.
Just had labs done in Nov., Thyroid, folate and iron was good but Vit. D was on the normal chart but low end. But, wow..... Sleepbunny that's a gold mind of information you gave. I'm printing it out and will check with some of the support groups you mentioned. Thank you so much for taking the time to do that for me. I very much appreciate it. You have a wonderful peaceful holiday
Two B12 books I found useful
They were published some years ago so some bits may need updating.
What You Need to Know about Pernicious Anaemia and Vitamin B12 deficiency
by Martyn Hooper, former chair of PAS.
Could It Be B12 ?
by Sally Pacholok and J.J. Stuart (US authors)
The B12 Society ( a UK charity)
Has useful lists of symptoms and causes.
B12 Institute (Netherlands) has some interesting articles.
Diagnosis and treatment patterns vary between countries. Even type of B12 used varies. Some forum members report that they respond better to some forms than others.
There are four forms available
adenosylcobalamin, cyanocobalamin, hydroxocobalamin and methylcobalamin
There are other people from USA on this forum. Might be worth searching forum posts with terms "America" or "USA" to see if you can find them. Click on Posts tab at top left of screen if on computer.
I believe that some US forum members source injectable B12 from Canada.
"Thyroid, folate and iron was good but Vit. D was on the normal chart but low end."
Did you see the actual results?
I learned from experience to always check results myself after being told everything was normal and then finding abnormal and borderline results when I checked.
Did you have a Full Blood Count (FBC)...also known as Complete Blood Count (CBC)?
I think Testing.com have a useful article about Complete Blood Count.
Did your doctors just check TSH or did they do other thyroid tests?
UK link about thyroid tests (hopefully you can access this)
thyroiduk.org/testing/thyro...
Might be worth posting on Thyroid UK forum. It's a very active and supportive forum.
I often suggest to people that they try to find local/regional/national guidelines on diagnosis and treatment of B12 deficiency.
I found a few articles when I searched online for "B12 deficiency guidelines USA".
Would you like me to post more info if I find something that I think is relevant?
Just so you know, you are not nuts! The fight or flight feeling that comes out of nowhere is the worst. I used to have it all the time, now it’s not as often but still have it and don’t know what triggers it. Glad someone else from the US in on here, I feel like not too many people in the US have this problem!
JHEW0836 You are so right. I don't think many people in the US even heard of it. That's why I was so excited with sleepy bunnies post giving a link to support groups for PA in US. I would just like to talk to some people with PA to see if they have figured out what triggers it because I've tried and tried to figure it out. It goes away and then out of nowhere is back. I hope you don't have to go through either.
Keep up with loading doses until you get rid of all of the symptoms. Then find a schedule that keeps them at bay. Hopefully, you can get to a place where you can lead a completely normal life again (like me) beside needing regular injections. I'm at my ski condo, and my husband gave me an injection today. Very best wishes! It's hard but hang in there.
That's great Hockey_player! So good to hear you're having fun! You and hubby have a good time skiing and have a wonderful Holiday
I didn't know fight and flight was symptom. I've had that for months. My physio thought it was central sensitisation and advised 3 weeks complete rest. In reality, it's been almost 3 months inactivity due to neuropathy. Still got flight n flight stuff going on.
we understand how you feel . I know that awful panic feeling as well where your mind goes very weird and your anxiety levels go off the scale.
I thank god for friends on here and people like Sleepy Bunny who help and post information.
I have so called friends who knew me before diagnosis and they just don’t get it! It’s hard for them to appreciate the devastating consequences. They switch off at the mention of b12 and often just cut you off. Sometimes you end up feeling alone and the effort of socialising just becomes too much .
I long for UK GPs to get a better understanding of the condition and stop being so dismissive and times abusive about us and are need for more frequent injections.
We live in hope that the B12 Alliance and all the expert groups it encompasses will one day educate and inform the doctors and offer hope for better treatment for patients.
Take consolation in that others do understand how you feel. We must all hold on together. Relax and rest over this Christmas period. Wishing you a better time ahead.
Gillsie54, I'm sorry you experience the awful panic feels too and just as you stated when it happens your mindset is different. But as far as people shutting you down when you mention B12 they trivialize it, like ok, it's just a vitamin she talking about. ABSOLUTELY NOT realizing how many body functions need it. It seem less important, insignificant when they think of this way. It's just hard to believe sometime that the doctors are guilty of the same thing. We will get through this Gillsie54 We all look out for each other here, thank goodness!
PA and sports
I have ALL of the symptoms of PA and it is ruining my life. My GPs won't look further.
Suspected Pa , symptoms question
Is it MS or PA??!!
