I am growing increasingly and genuinely worried. I have never felt so insidiously exhausted. Its tiring to raise a cup to my mouth. I feel very dramatic saying that but its true. This is a rapid decline. Im taking folate iron and b12 supplement but thats only in the past few days i know it won't do much. I have considered going to a+e 3 times in a row this week due to how breathless and weak i have felt with also fast and irregular heart rate. I'm having a phone call with the dr tomorrow although i asked for an appt on tuesday so thats felt like a long ass wait. My insides feel like they are jangling, twitchy and tinnitus aswell. Its just awful i cannot live like this.
Does anyone have any advice about what to say to dr to get urgent help. I have had the loading dose and also waiting on IFAB results - that was 10 days ago tomorrow and they say it takes 10 days though i dont know if thats 10 working days. I have said that its every other day until neurological symptoms improve though that will be deeply inconvinient for me to get to the drs which is a 30 min walk each way i cannot possibly do that, no bus there so £10 taxi each way. great.
boo
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ozwald28
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Thank you! I am looking into preparing for SI i am going to get the verdict from haematology first and find out the diagnosis, but if its PA or not i dont think it really matters anymore i just want to control my symptoms! glad youve found a solution and good to know theres one for me too
Thank you for taking the time - and more particularly your precious energy - to reply to us all. Very much appreciated.
All the links you need for SI are in posts and replies by wedgewood
You will find details for ordering, advice on needles and syringes, sharps boxes and their disposal, and tried and tested methods for injecting.
I know it feels horribly daunting to stick a needle in yourself, even if you've given injections before, but you possibly play with cats/kittens and go in the garden with spikey plants without giving it a second thought and they don't give you your life back!
I was just the same, as are most diabetics, people on fertility treatment and other conditions, etc, but we all get used to it and find it much easier than having someone else do it, once we've done it!
Nowadays I have to follow a strict pattern because I can easily forget in 5 minutes whether I've done my jab or not, I take it for granted so much.
The idea of it is many, many times worse than actually doing it and there are lots of people far less capable than you, including some with crippling needle phobias, who learn to SI OK so I know you'll be OK once you try.
Anything to get out of that sort of "locked in" feeling that you get when you are so exhausted after a couple of hours that literally nothing works!
Just go gently and don't expect too much of yourself - remember your brain is currently compromised too so it doesn't even want to think about sorting things out or doing anything.
Do what you can, when you can, and get there slowly. X
I have been where you are and indeed it is scary and I can fully understand your concern.
My Dr wouldn't budge on the every other day injections but I did manage to get them changed to 2monthly. I batted guidlines to the surgery about treating the neurological symptoms but all I got was a referal to a neurologist. I waited months to be seen and if honest he was useless but that is another story.
I were so desperate like many others on here I started to self inject. I made slow progress and still have set backs from time to time. Depending on age, health and mobility your surgery could send a district nurse out.
I do feel for you because I know how wretched this is and to have to battle for treatment adds pressure you could do without.
Awe i know, thanks for empathising it does feel a little better knowing others understand - not that i'd like anyone to go through this! I have fallen over and nearly fallen over 3 times in 1 week because i keep losing my balance too. I think most scary is when i feel too weak to even raise a cup to my mouth. Though it does come and go and is worse in the evenings so must make the most of the early day but not go in too hard. Thank you x
it sounds scary, and is for the first few times. Once you overcome the fear, it will become just like everything else. The most positive thing is that you will have control, no more pleading with the NHS , who sadly have no idea and do not realise they are making people suffer.
Thank you - yes i am going to seriously consider it once i hear back from haematology. I just worry that maybe i don't have PA and then am i being dramatic to inject b12 ? I just know my path is never straightforward. I can just tell they are not going to be able to diagnose PA, so then i'd feel like i was going way over board to inject myself when i dont even have PA diagnosed does that even make sense? x
If you have a B12 deficiency which has resulted in neurological damage, you would still need injections even if you didn't have PA. This is because its the safest and fastest way to replete liver and tissue B12 stores. I do not have PA (AFAIK) but received twice weekly B12 injections for 6 months when my treatment began. B12 Institute Netherlands recommend twice weekly injections for 2 years if neurological symptoms are present, regardless of the cause. Then its up to you to watch your symptoms and see if you can get by on less injections or whether symptoms return between injections. With respect to the frequency which works, its highly variable and individual I think. I moved to injections once a month after 6 months or so and 1000mcg tablets daily in between which has been working (ish) for me so far.
this is great thank you! Reassured to know either way injections are better for neurological issues. So stark how our health systems view b12! 1 every 3 months we get offered ha its absurd! I will do it until i feel like a person again - i may also end up going private for some further tests and support but will buy to SI and hopefully see improvements x
I was scared to SI. It seems it would be painful pushing a needle in, so the first one I was anxious. But no pain at all. Now I SI every other day and don’t even think about it. I inject in the thigh … watched a couple YouTube’s to get it right and seriously it’s painless. If you dr won’t give you a script you can order from online pharmacy in Germany. It’s fast and efficient. apohealth.de
Referrals are expensive so if GP won't refer you then you could ask them to write to a local neurologist or haematologist asking for advice on how to treat you.
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro enterologist
This info is also in the GPs BNF book Chapter 9 Section 1.2
Red Cross might be able to help with transport to and from appointments. Don't know if there's a cost and service not available in some parts of UK. Possible that pandemic has affected this service.
I have just spoke to the dr it was not a pleasant phone call for either of us. IFAB was normal apparently - of course. She was very cagey about what the NICE guidelines say and wouldn't accept every other day until neurological symptoms improve as a way forward as they suggest. She did put a referral to haematology through saying they are quite quick with it. I have asked for a 2nd opinion about the injections due to how terrible i feel and hopefully will hear from the other doctor on monday. She had to remind me she's done 20 years in medicine. Tried blaming my mental health as per usual. Christ im fuming. She said they are going to do parietal AB tests and if that comes back negative they are ruling PA out. I guess once its ruled out it will be put down to being a vegetarian and being mentally ill and i am told to move on with my life.
You really should have a linger clearance of b12 begore testing parietal cell antibodies. Some say 3 days, some say 2 weeks. That was the one test on me that was +. My b12 was serum was not that low, 395. But here in the US there is no active b12 or holoTC test available.
yes ill make sure to leave it a while between taking my b12 supplement and the parietal anti body test. Im sure itll come back fine ans its juat my fault. Hey maybe it is me just being mentally ill after all.
GP was very convinced she did not have to follow nice guidelines. On a positive she has referred to haematology and i am getting the 2nd opinion on monday. Im just going to take that from the call and try and ignore anything else cause im getting very wound up about the MH scape goating but you know its quite unoriginal of her to go there.
Dont tolerate this sort of victimisation just because of your BP it is not acceptable. I had some loon of a neuro try and labell me with functional overlay !
I no more have that than a boil on my ruddy bum and now have a case open with pals. Its either self inject or ride the storm.
Awe thanks so much you are a diamond - Also so glad you are fighting your own corner so well and it is giving me fuel to fight mine - we will get there x
I was actually diagnosed as “hypochondriasis” decades ago lol. Sent home from the emergency room diagnosed as “anxiety state”… well here I had lymphoma, sjogrens, b12 deficiency, pernicious anemia and still haven’t found reasons for other symptoms for other symptoms. Anxiety? Yep, I feel like I’m dying and no one would bother to help, of course I’m anxious. Always told “labs are fine” until I got internet portal access, there were SO not fine.
Don’t forget that you know your body, you are the only specialist on “you”.
sorry to hear. They all seem to reach for the mental health label at most opportunities. I think I only managed a breakthrough to get a GPs attention by focusing on pins and needles as a symptom. Even then it took 25 minutes for them to acknowledge B12.
There comes a point where you have to weigh up the stress/stigma from pursuing what you know you need with medics with the ease of ordering B12 from Germany and getting it delivered in a few days for you to inject.
It can be horrible and scary to think about but you can see it the same way as ordering multivitamins online - no difference.
Get Panpharma DEPOT from Bodfeld Apotheke or Vasandapo. And your needles from Medisave.
Then you can inject into four muscle sites - arm deltoids and thigh vastus lateralis.
It could take 6 months of doing this before you feel better.
And, yes, its pretty likely the vegetarian diet played a role in this. I was a low meat eater (fish, eggs, cheese, chicken or red meat once a week) and got gut dysbiosis after two years in an untenable and stressful job.
Once you start to self inject it will be second nature. And you'll start feeling much better
yeah i did just think there is only so far im willing to go being completely patronised and insulted. If its not PA tho maybe i dont need so much? I am just at a loss. Scared if they cant diagnose me then i will end up just feeling responsible and useless. Another string to my bow of failures.
B12 deficiency is the cause of your symptoms, whether thats PA or not wont preclude you from injections. My wife thought the same, that I shouldn't need so much if its diet, but I think it is more than just lack of intake. Its a systemic issue that needs alot of B12 juice over time.
So yes, keep injecting until you feel better.
I was extremely depressed leading up to and during the deficiency. Thats because B12 is needed in the brain and nervous system to regulate emotions.
You should assume that you may be depressed because of low B12. And not listen to any negative thoughts. They will pass, and you will get better. But only with injections.
You may have to depend on your own supply of B12. And that's a shame since youre still young. But it is totally manageable and of course you will be in control once you obtain the injections.
Keep fighting for yourself. But get the injections ready now since its inevitable you will have to inject. Almost everyone does, regardless of deficiency cause.
Its really good to know that regardless of PA or not that SI would still help based on my symptoms - so reassuring thank you - i think i am now in a spiral of thinking yes i must be over reacting 🤔
I have a theory that there are some people who need more B12 than others to keep their nervous systems strong. I think I am one of those people - but the only way to really find out is when you get deficient. I now have to eat tonnes of meat and protein, focus on sleep and not be in a stressful job. I work from home and am self employed. All of this is to heal my whole system including my fragile mental state. And that is now solid after 18 months of treatment.
Dont be hard on yourself. Theres always a reason for lifes challenges. Youll be very strong when you come out of it.
Keep pushing the GPs and well done for how far you've got - further than I did.
Again so appreciate this support its exactly what i need right now to get me through after the phone call sending me in a spin. There is definitely hope then with SI - i just hope i can get through the tests asap and get that sorted. My nervous system feels jangled haha i cant explain it in any other - shooting signals down my legs randomly jerking what a mad one. 🥴 Glad you have figured out a balance in your life that supports your health! That is a great goal for us all x
Now listen to me hun you are not a failure just because you have BP. It is their incompetence and ignorance that they are not able to diagnose. Take a look at how many of us are on this site and ask yourself can we all be wrong ?
Thank you <3 i know you're right, that phone call was really awful. It triggered such a deep seated feeling of failure. I even had a heart procedure in 2018 where the surgeon at the end couldnt find the cause of the arythmia (which does happen sometimes) and decided it was just due to my mental illness and not to have any more cardio treatment. It just makes me feel so frustrated that its always the scape goat. Oh youre nuts theres nothing else wrong. I still have heart issues and (probably due to B12). And then when you go for support with your mental health you don't get anywhere either. the NHS has fallen on its knees, we all know it. What are we meant to do? I will seriously look into SI i think i will wait until all further testing complete and just go it alone. I wont see a dr again unless i am literally in A+E dying over something wonder then if they'd still blame my old mental health 🤪
You could ask your dr if they could prescribe them for you to do at home. If they’ve offered them that frequently at all then you’re lucky. It’s not fun, but I do mine at home.
You could look up the NICE guidelines and maybe print out a copy if they disagree about increasing frequency.
I’m sorry you feel so awful. I do too and it’s very scary, I feel like I’m dying, I’m scared to be alone.
I was doing every other day with folic acid, felt improvement in about 5-6 weeks, but short lived. Then I plummeted back to worse than I was prior to injections.
they havent offered me anything haha. Its so scary - the dr just said i can assure you you won't die. I guess that should make me feel better but it juat frustrated me.
It is very scary in the beginning! And the symptoms can get worse before getting better. That was scary. Your body is waking up and getting what its been lacking. It will now start recyling the old bad rbc's and replace them with new blood cells. That will make your body rebuild itself and probably push out toxins that have been making you feel terrible. Toxins and bad blood cells make you feel terrible. That takes about 90 days. You will feel worse before better. And possibly skin could break out as toxins try to get out of your pores. I did after the 3rd month. Still get some pretty itchy blemishes. Hard not to scratch or pick and them, pretty much want to tear your skin off lol. Just somethings to look for as you improve. . It can ve dark before the dawn but hang in there. I had the exact same symptoms. Racing heart, confusion, worsening pain. I'm on month 5. I'm just turning a corner and starting to feel positive changes. Hang in there. If you're feet arent numb. They might get there. I wasn't numb at first, now i am. That started last week. So month 5 it started. Waiting to see if that clears up. It will get better. It is slow. Hugs to you Ozwald28 🦋
thanks ellanore its a lot isnt it! Its such a head scramble aswell when the dr isnt even concerned or interested in treating you. Its reassuring but also sad to know how intense and serious this is for ua all. I am going to get the stuff to prepare for SI, glad you coming to understand the recovery process more it means you are getting there slowly but surely x
It is a lot!! Very overwhelming. You learn a lot quickly. Once you start self injecting, you feel so in control. So liberated. I don't worry as much about what my docs think. I trust this forum more. Hang in there.
I don't have any advice Im afraid but wanted to say how much I commiserate with you.. as I feel dreadful too. My grandmother died of PA& I have all the symptoms but I was self administering Vit B12 drops , & was starting to feel much better.. however when bloods were done GP said i had no pA & my Vit B12 had gone from way below to over range & to stop my B12. We have moved now so I've had to register at a new GP practice & due to jave full bloods tomorrow.. SO... I have stopped all the supplements I was taking so see if we can get a good picture. I have also been referred to a consultant neurologist as I've been losing my balance as well as all the other B12/PA problems... So my advice try to take yourself off any supplements before a full bloods check & ask to be referred to a neurologist. I too am SO SO tired... But sleeping badly too!
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