For as long as I can remember, I have been suffering with various levels of depression and anxiety, lack of energy, poor sleep habits and headaches.Yet both times I have come out of hospital with B12 shots, I have felt like a new man with a new brain, like nothing previous worried me as much anymore. The first time, I made so much progress in my life, major milestones such as moving out for the first time, started my first serious relationship and moved in with her.
Our relationship has soured over time and now that I can look back in hindsight, the 2 years before my diagnosis have been a steady decline in mood, increasing depression, increasing anxiety, sleeping in later, struggling with headaches again. Then I was in hospital and after a few days diagnosed and given B12 shots and now apparently needed for the rest of my life. I felt SO much better mentally and physically so quickly and all that depression and anxiety seemed to have vanished. The stuff I was worried about such as learning to drive and finding a new job didn't seem so bad in my head and I was able to handle my hygiene and cleaning the house and stuff like that with much more ease and more determination. I have also been able to wake up at a normal time with no headaches which seemed impossible just 2 weeks ago.
Surely this is not all coincidence, surely this is not all in my head? Can anyone else verify the same feelings or experiences?
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Valid94
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Smells like it could be B12. Unless there's a dietary or other more unusual issue it's time get some testing for PA. (See "Various B12D/PA Resources" pinned post in sidebar).
The awesome reaction to B12 makes it seem obvious this is PA. I don't see how extra testing will help. It may hurt. They could get a false negative then have doctors balk at giving more B12 shots.
Some people want to have a PA diagnosis on their records to help support "injections for life" and get at least their regularly prescribed B12 shot for the rest of their lives even if they do end up deciding on self-injecting at a higher frequency.
Doctors will often (wrongly) balk at more B12 shots anyway just by noting the elevation of B12 after a shot is given (even though testing after treatment is not recommended).
It's hard to account for all the ways doctors can be idiots 😆
Hi Valid94, a lot of what you describe sounds like my decline before being diagnosed with pernicious anemia. Lot's of trouble waking up, increasingly bad mood, intense anxiety, almost constant headaches.
Have you been given a diagnosis? I'm glad you're feeling markedly better with the B12 injections. For me, starting B12 injections I felt a bit like I was coming back from the dead. My energy was getting lower and lower, and I could barely eat. Keep on the path you're on, it's worth pursuing answers for your health!
Yes, I was diagnosed with pernicious anaemia just last Friday. It has been such an instant turnaround I can barely recognise the man 3 weeks ago and I wasn't sure if I was being delusional about how much it has changed everything. I agree, it feels like I've gone from a zombie to borderline athlete energy and determination. I'm amazed really. Just wish I had found out sooner!
I'm so glad fro you that they were able to hone in on it for you! I definitely feel your pain about wishing it had been discovered sooner. It is pretty mind blowing in a positive sense how much better you can feel with B12, right? Again, so thrilled for you and wishing you all the best in your recovery!! 🙌
Oh, and you are NOT delusional. Super exciting stuff! And crazy how you don't notice all these things being connected until they ALL start getting better with continued B12.
Dear valid 94, I am very sorry that this has done this to your life. I'm going to jump in and say that I would think that a huge majority of what you've been through and how you felt is from pernicious amemia. I too suffered from a lot of what you're talking about. It started getting so bad that I wouldn't leave the house. I think that you're going to find that B12 injections are going to help you immensely. You have to make sure you're getting enough though. If you've been diagnosed with pernicious anemia, and you're only getting one injection a month I'm going to venture to say that that's probably not going to be enough for you, so just know that if you're starting to feel better with one monthly injection and then you start to feel bad again, it is just simply because you don't have enough B12 and you're not getting it enough. Things will get better with B12. I think you'll see a big change in your personality and your fearfulness and anxiety. There's something that can come along with PA called Subacute combined degeneration SCD. It can attack your spine and it causes neurological issues throughout your body but it also causes mental issues and brings on symptoms of even dementia. So if you start feeling that way it is probably just your B12. And you probably just need more of it. But since you just got diagnosed give it a chance to start working for you before you decide whether or not you need more injections than once a month. Many of us do need more. I believe everything you mentioned is pretty normal with pernicious anemia and I hope that that makes you feel better. Because when you find out what really caused your mental issues it is such a relief that you are not crazy. And you start to feel so much better quickly. Good luck. 🫂
One more thing sometimes you can feel worse before you feel better with some things. But that is normal. It is your body waking up from being starved of b12. It's called reversing out. Even your liver can get sore and enlarged but it will subside. Your liver is where b12 is stored, normally. So with PA it has been depleted. That can take as much as 10 years. So, if you have pa, you've had b12d for quite a while. PA is the advanced autoimmune form of b12D.
Just so you are aware symptoms can be just as severe or worse without a PA diagnosis. One of my daughters had a very low level of B12,folate and megobolastic anaemia .
Late b12 test so years of damage deteriation
Was very ill and caused POTS.
She was only given one IFAb test which was negative .
Needs b12 injections for life.
It will only diagnose half of those with PA .
Also there are numerous other absorption problems.
Dietary causes can be 'turned around' with high dose oral b12 or a course of B12 Injections .
A change of diet or regular b12 as a maintenence dose orally.
Triggers often are:
Hormonal changes .
Puberty or menopause.
Daughter and me and sister.
Low stomach acid ,hormonal drop again when older.
My mum.
Things you can fix are ;
Stopping medication that depletes b12 .
Supplementing a low b12 diet or after childbirth.
Many, many other reasons or triggers .
Thise are just what affected 3 generations of my family.
I'm so sorry Nackapan, i didn't mean to imply that b12d isn't as bad as PA. I thought it was all a matter of how long some one has it as to how much damage can be reversed. I'm sorry that your mom and sister suffer so terribly too. That would be PA because it is autoimmune. Right? Even if you didn't get a pos ifab?
Funny you say that about menopause. When I was 23 years old I had a hysterectomy and forced into synthetic menopause with a drug called Lupron. That's when I first started feeling bad. Then when I was 59, I got breast cancer and they gave me the same type of hormone suppressant as the Lupron only it was called anastrozol but both of them are hormone suppressant, and that's when my PA symptoms knocked me to the ground. I was always ill, but this was 1000 times worse. Literally was crawling on my hands and knees for months. I've thought my PA could be tied to the hormone suppressant medication that they injected me with every month for a year. But my grandma had PA as well and B12 deficiency runs in my family. Although, they don't have PA. Only my grandmother had did, and she got stomach cancer and passed away from it in 1972. But I was told she only got one injection a month.
Thank you for your message. Yes, one of my doctors at hospital mentioned the spinal degeneration which is really scary but all the tests showed no signs of that so far so I'm hoping it stays away with consistent shots.
I'm so pleased to read you've seen improvements quickly.
Might be worth keeping a symptoms diary.
Pick a set of symptoms (up to ten - more if you have the time/energy)
Score severity of symptoms daily or weekly.
Note date and amount of treatment given. Note any relevant blood test results.
Could be useful evidence of improvement or deterioration in symptoms to show GP.
It may help GP work out how often you need injections.
There have been forum members with a previous PA diagnosis whose injections were stopped and when they queried this they were told there was no PA diagnosis in records.
I suggest you access your medical records to see if PA diagnosis is recorded and keep a copy somewhere safe of this diagnosis.
Try to find the local B12 deficiency guideline used by your ICB (Integrated care Board) in England (Health Board in Wales/Scotland). Keep an eye on it.
Local B12 deficiency guidelines across UK will probably get reviewed soon due to new NICE B12 deficiency guideline.
Really pleased for you Valid94. You have got your life back ! If you ever fail to get enough injections , Zhou know , don’t you , that most of us have to self -inject to keep well . So do ask for information on S.I . it’s cheap and easy once you know the ropes .
You clearly have B12 absorption issues. Often, symptoms creep up slowly till it becomes critical. At least that is what happened to me.
If you stop your treatment, things will come back. Hence, it is important to keep up the treatment. Essentially, you should take a shot when your body tells you, not when the doctors say it is time, which they may say 1 month, 2 months or even 3 months. No need to overdo it either. When you start feeling low energy or have mental issues, just take a shot.
That’s exactly what I was advised when I bought OTC in Germany. Inject when you feel the need but don’t overdo it. All the hysteria about tests, levels and treatment here is so misguided.
I hope your GP is looking into why you are B12 deficient.
There are many possible causes besides PA and some of them may be temporary.
Has GP discussed diet with you?
Other causes include coeliac disease, internal parasites such as fish tapeworm, some medicines/drugs, H pylori infection ( a bacterial infection), excessive alcohol, SIBO small intestine bacterial overgowth, exposure to nitrous oxide and there are many others.
Have you considered joining PAS (Pernicious Anaemia Society) if you suspect PA?
Please take it easy, until you have an idea what is possible now and what you may need to work toward. What frequency of injection can ensure you can maintain those gains.
Really pleased that you finally got a diagnosis. Pernicious anaemia. Keep a printout of this. Ensure that you have a supportive GP to keep an eye on your progress.
Also reminder to get GP to monitor folate, ferritin, vitamin D and thyroid in case any of these are affected. It can take a while to get these in balance and able to stay at useful healthy levels.
Welcome here. Congratulations on returning to health and having Quality of Life. My goodness about 2018 and very pleasing to know that you are still with us. Do you know the reason for being transfused 2 units of blood last month ? It is just so you know your Medical History and susceptibilities. This makes you a more informed and empowered patient.
Please read Sleepybunny’s very informative posts with the links and seriously consider joining the PA Society. Plus, like Cherylclaire says get a hard copy of your PA diagnosis and keep it in a file safe.
This disease is poorly understood by the medical profession. Please learn about it from the reliable sources. They do silly things like retesting your B12 levels in your blood. According to the British Haematological Society, once treatment has commenced it is futile rechecking. Our levels should be high. A number in mg/L does not say anything about symptoms such as pins and needles, numbness, fatigue. Nor what is happening at cellular level. Then they even more silly things by writing on the pathology report that we have enough stored in our liver for 2 years. So do not need further injections. Our disease means we cannot store B12.
Sleepybunny’s most recent post discusses medical nomenclature. Now, I much prefer to use the word injection because it is. FlipperTD and I regard shots as something else; we are rather ‘sporty’. 🤣
As wedgewood has said many of us cannot survive on 12 weekly injections, so ‘we do what we have to’.
I noted previously regarding your potassium - coconut water is a good source of and is fluid. So, does not need to be broken down like food such as bananas or beetroot. Obviously, if you hate, dislike are intolerant do not drink it.
From what I was told by the doctors, it was because I wasn't producing enough red blood cells and so my haemoglobin was low. I was on the borderline this time. They said the number should be around 130-140 normally and at 70 they need to transfuse and mine was at 73 at time of admission.In 2018, it would have been way lower than that too.
If you were diagnosed in the NHS you are one lucky bunny and anyone here will tell you that if that is where you were diagnosed you are most def B12D whether that be deficient or PA but you are def a sufferer . . . . . . These diagnosis are like Olympic gold medals, very sought after and hard to get. . . . . . . If you have one you deserve it. . . . . . And there is no cheating involved . . . . . Ye could not bluff this one past the NHS no way. . . . . Glad you got your diagnosis and all the best into the future. . . . . . .
Yeah, it was from the NHS. I'm relieved that I finally know but just wish they had done more tests or been more diligent in 2018 so I could have avoided my life and relationships being damaged by the symptoms this time round. 😔
My 36 year old daughter still refers to the time that I spent all my times on the sofa . . . . . Just got up to go get them from school etc and lay down again . . . . . Wifey worked and kept us up but is was not easy. . . . .
It is not just you. I went from Zombie to energizer bunny when I finally started getting B12. I think doctors do not always want to supplement enough. It would be smart to keep a symptoms journal to find out how much B12 you need. Many of us on this forum self-inject so that we can take control over the dosing schedule. You need B12 for life. Don't let anyone convince you otherwise. Sometimes they test B12 and say, "Look it is high" ( it is because you are supplementing) and try to cut off your B12. Easiest to just remind them that protocols recommend not testing B12 after you start supplementing. I am 62 and with adequate B12, I am an athlete. I am currently skiing every day. When I am not skiing, I place ice hockey (often with the guys) almost every day, and have a lot of dance classes. It feels so joyous to have the energy!
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