hello all, this is my first time posting here, so I’m happy to meet you 😊 I just wanted to share a little of my journey so far and ask for some perspective,
I started visiting my gp when I was 18 for extreme fatigue, feeling faint and weak and shakiness, I think this was something that had been progressively getting worse from about 16 if I remember, though my hair started turning white at 15, and I’ve heard this premature greying is a symptom, so likely have had it for a very long time… I honestly convinced myself at one point I had MS, 😅 saw multiple GPs, none of which were interested, gaslit me, trialled me on antidepressants at one point. I thought it was normal because I don’t really have any family so I didn’t have a parent or anything to advocate for me or explain that I was being treated poorly, it took until I was fainting nearly every day at 22 for them to take some blood tests and finally told me I had PA.
They didn’t really explain to me what it was, except that I would get my life back and feel normal once I started B12 injections, so I was very happy, I had my 2 week loading doses and then was put on 3 monthly injections. Now I am going to be 30 in October and I’m exasperated because the injections did not improve my quality of life at all, obviously I know I wouldn’t be here without them 😂 but I was hoping that I would be somewhat normal like the dr suggested back when I was diagnosed
so I have now learned a little more about my illness and have decided to start SI, and have ordered everything I need but I feel a little conflicted. As this is something I have lived with since I was literally a child, and the memory issues that come hand in hand with PA, I honestly don’t remember what it feels like to not have these symptoms. These symptoms are normal for me and I have nothing to base any form of recovery on…
I see these posts that say to keep taking a loading dose until you aren’t symptomatic anymore and excuse my French but I have no idea WTF that looks like 😂😂 part of me is dubious that it will even do anything but I don’t know if im just trying to manage my expectations because I don’t want to get upset again if I don’t get to have the QOL that Im hoping it will give me.
Im also sad and grieving because as I said I am 30 soon, and this illness has dictated my entire life, I used to be so clever and went to a school for more advanced children and was placed a year ahead, I used to be so active, I was part of sea rescue and a scuba diver from the age of 13 when I lived in Australia (lived in uk since 16), I worked 2 jobs, lived alone and went to college for a levels from the age of 16, but then from the age of 18 things started to really go downhill. I had so much ambition for my life and still do, I had a dream of going to university for psychology and becoming a therapist, at 20 I tried to go to uni but I couldn’t concentrate enough to focus on the work and didn’t make it past the first month. I then had to leave my job at 22 and I have been on disability benefits ever since.
I’ve been fighting against these symptoms and the limitations they place on me my whole life, being in denial. Telling myself that the dr said I should be fine now so if I push hard enough then I will just be fine . The past year I have started my own business from home, which I love and I have altered it so that it can work around my illness as much as possible, but even this is very very hard on me and the stress of it makes me catch illness after illness. For example, the past three weekends I have been sick with two different colds, the second cold has lasted two weeks and I can’t seem to shake it and it has filled my mouth with ulcers. Again, I have so much ambition when it comes to my business but I’m fighting a losing battle it feels.
Im usually a very positive person because I have to be, and I have had to learn to be happy with what I’m presented with, but this past week it has just really gotten to me and I am feeling so sad about the life I should have had and that I am in this body that from the get go felt like it had already given up.
So I don’t really know what this post is, I guess a little vent to people who could understand where I’m coming from? It’s hard when you have an invisible illness and if like me you fight against it all the time and try to come off like you are fine but for me it literally feels like my body is rotting from the inside. People around you don’t see how hard you are fighting to just live some sense of a normal life every day and label you as lazy or like you don’t try hard enough.
And also for you guys with more experience, do you think these injections at home will actually lead to any improvement in my life? Because as much as I am trying to stay positive I feel so hopeless. Thank you for taking the time to read ❤️
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Aymelss
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You have had a long journey here. I am sorry for those lost years - and especially at so young an age. Many people here will be able to sympathize with your journey. I've also had to stop working and put studies on hold due to the ravaging effects of b12 deficiency. I understand very well the idea of rotting from the inside! After 7 years, I can truly say I've felt better than I have in a long time.
No one can say for sure if you'll be walking on clouds, but there is a good chance you will feel a LOT better once you get on the right treatment for you.
I suggest you keep a daily symptoms log. I created something in excel, printed it out, and manually checked off symptoms - I would rate each symptom on a scale of 0-10. I also left some space for comments, and years later those comments have been the most interesting to read. I also noted how much B12 and folate I was taking (and their brands). Twice this became an invaluable tool to troubleshooting issues that popped up.
And because B12 works slowly - I'm sorry but don't expect instant miracles - the symptoms log will be a good way to track the subtle changes. You can also feel worse before you feel better, and it can be a bit of a roller coaster in the early days - so don't get discouraged.
How much B12 are you planning on injecting? Every-other-day is probably a good place to start. And despite what doctors say - "you can overdose, it's toxic" and so on, B12 had been proven safe - even at high doses - over many decades. The article "Treatment with high dose vitamin B12 been shown to be safe for more than 50 years" : stichtingb12tekort.nl/engli... And no one says you have to reduce - ever. You can stay on every other day indefinitely if you want/need. So just work on getting better and you will see how things go.
With ulcers, it sounds like you could have low folate as well. B12 and folate go hand-in-hand, so you need good levels as well. More info: b12deficiency.info/folate-b... If your GP will not test, you can get private testing, here is a list of private labs in the UK along with discount codes, from the ThyroidUK group thyroiduk.org/help-and-supp... Some of us can get by on B complex with 400 to 800 mcg folic acid or methylfolate, while others of us need higher doses (5mg).
A modest B-complex can also be useful to keep the other B's in check, just watch out that you don't get one with excessive levels of B6, as that vitamin CAN build up and become toxic.
While you're testing, it's also useful to get the following checked, as many of us seem to be low in these, any these deficiencies will also make you feel horrid and affect your immune system:
- Vitamin D
- Iron panel: serum iron, TIBC, % saturation, ferritin
- Thyroid labs: TSH, FT4, FT3, TPO and TG antibodies - often when we have one autoimmune disease, we are likely to have others, and thyroid is a very common one.
Low B12 can cause low stomach , preventing absorption of important vitamins and minerals (like some of those above). Do you have any digestive issues ?
Keep in mind that potassium can go low in the early days of injecting frequently, as the body creates new, healthy red blood cells. You can google foods high in potassium and increase those.
I also encourage you to go through the Various B12D/PA Resources pinned post, there is a lot of information there, so work your way through it slowly. healthunlocked.com/pasoc/po...
Hi Jade, thank you so much for your lovely message and taking your time to write to me!
I understand with the nature of AI issues you’re never really going to be at 100% and there are always ups and downs but honestly even a small improvement is something worth celebrating I feel, so fingers crossed!
Although I know I have had three monthly injections for 7-8 years now, I would imagine that the 2 weeks loading dose they gave me prior to that was likely not enough to really make a scratch on years and years worth of deficiency. So when I think about it like that it does make sense that I still feel so unwell. I would also imagine getting to a point where all those years of damage is healed will take a fair amount of time…
I’m hoping to start with every other day until I stop feeling any improvement, and then start experimenting with how long I can go between doses, but again as I have no idea what it feels like for these symptoms to not be present, it all feels like a blind experiment 😂
The spreadsheet is an excellent recommendation thank you, as you know the memory issues make it challenging to remember, so this would really be the tell if there is any change long term. My Gp does take my bloods quite often because I regularly seem to be unwell (probably because there is not sufficient treatment of the PA) quite frequently things like folate, iron and vit d are low which they give me supplements for, I am also being tested for hashimotos at the moment as I have had 6 experiences with baby loss which they think may also be AI related. But I think I will get the thyroid looked at privately.
Yes to stomach issues, i supposedly have fibromyalgia but I honestly suspect it isn’t and is rather poorly managed PA, so again gp says tummy troubles are a fibro thing 🙃 recently I have been trying to take charge of this through experimenting with dietary changes, probiotics, parasite cleanses etc but It seems no matter what I try, 💩 is never a healthy … consistency? 😂
Thank you for all the resources too, this will be very helpful and I will definitely get some extra bananas in! 😂 have a lovely weekend! ❤️
You're very welcome! 😊 Feel free to post any blood test results here. Fibro is often B12 deficiency, hypothyroid, adrenal insufficiency, or a combination... I'm sorry to hear of your losses x hopefully getting everything optimized will allow you to live your best life x
Baby loss can be caused by low folate. Have you been tested for MTHFR? If this comes up as positive you have to take methylated forms of B12 and Folate. Folic Acid won't work and worse can build up to toxic levels. I wasn't diagnosed with MTHFR until 53 years of age (we share a similar story). You still have many more years ahead of you - DEMAND - you are checked for MTHFR. I have 677tt. High B12 and high folic acid via lab work albeit none getting into my cells based on symptoms. Was prescribed high dose methylfolate (Deplin in the USA) and it is making a difference. Sending a hug. I "get" you as I too have needlessly lost jobs and lost "life" because of this. Have a great brain that missed out on a shot at greatness due to low energy, etc.
I’m so very sorry that you have had such a rough deal . It’s due to the medical profession’s ignorance of B12 d /Pernicious Anaemia . In your place , I would start self-injecting , every other day until your symptoms disappear, or failing that , stop improving . You can self inject using either I.M ( Intra-muscular ) method or Sub-cut ( Subcutaneous) In U.K. we use excellent German online pharmacies to obtain our single use B12 ampoules . ( no prescription needed in Germany , unlike U.K. .) Sub-cut is less intimidating as the needle required is short .
Apohealth has a site in English ( bottom left on my device , Union Jack flag ) No charge for delivery.
For versandapo you should use Google Chrome to get translation .
I use Panpharma B12 depot ampoules ( Hydroxocobalamin B12 like GPs use) as they are best value Reference no 16199653
These are popular and sometimes out of stock - In that case try Pascoe B12 depot ampoules . YOU MUST PUT DEPOT , as this indicates Hydroxocobalamin not Cynocobalamin.
Needles, syringes , swabs and sharps bins from medisave.co.U.K.
Sorry , I have to dash out now. You need some more information that I can give at a later time .
Hi! Thank you so much for getting back to me and thank you for your kind message! I’m happy you have suggested all of those because those are exactly the things I have ordered, so it’s nice to see I’ve ordered the right bits! This forum is genuinely so helpful and I’m hoping what I am learning here will really make a difference, so thank you! ❤️
hello Aymelss, I am so sorry you have lost so much for so long and it is only right that you should grieve for this. Plus being ill with infections no wonder you feel despondent atm.
Im afraid that most medical staff have little knowledge of B12 deficiency /P.A.
I commend you for your positive attitude throughout and now you have the knowledge and means to start to care for your health. (I self inject subcutaneously every day to get the treatment I need).
Thank you so much for your lovely message, I’ve found it to be such an isolating illness because virtually no one I have met so far has actually known what PA is, and for a quick Google online, the vast majority of information is so vague and doesn’t really get into what it is like to live with this, it isn’t until you dig a little deeper that you find places like this forum.
So it’s hard to explain to people what a struggle it is, especially when to look at me, I have all my limbs, usually a smile on my face and I’m always pushing myself to be physically busy. So it surprises people when every now and then I remind them that actually I feel very unwell virtually all the time. the hidden aspect of the illness can be frustrating
I’m happy to be able to connect now with people who actually get it, thank you for your positivity! Have a lovely weekend! ❤️
Mouth ulcers...have you been screened for Coeliac disease? (AI diseases can be linked)
Your post really resonated with me. I have pa, coeliac and thyroid problems (and a few other things!). Took me 49 years to get the Coeliac diagnosis so I totally get the not knowing what feeling well is like and having to push yourself every day and having family think you're lazy! I also look reasonably well on the outside (I wear a lot of make up!). People also seem to think that now you've got a diagnosis you should magically feel well!
I started SI two years ago. It took a year for the tingling in my legs to go (I wasn't SI eod though, wish I had now). So yes, I think the injections at home will show improvement. Do it, you've got nothing to lose!
Sending you love and best wishes, you're not alone, and you're doing so well coping with it all you should be proud of yourself.
once every 3 months is probably insufficient. You probably need much higher doses/frequency. With hydroxocoblamin, once-a-month should be good enough, but you can also try every-other-day as others are suggesting. Just note that people find reducing the frequency/dose not always easy as it leads to return of symptoms.
My life has been very much like yours, except that mine came much later.
I'm 78 now and mine officially started when I was 44, but when I look back over my life the signs were all there. Fainting and blackouts, breathlessness, muscle weakness, tinnitus, memory problems, and general failure to thrive. Even now there are things like muscle cramps which started years ago but I was on 3-monthly injections so assumed it was just old age.
It's only since I was forced to take charge and inject myself as often as I felt the need that all those symptoms - apart, sadly, from memory - have started to fade. A good life has passed me by but still I have hope that the future can only get better.
You need lots of hugs and cuddles and I just know reading your posts that you will absolutely smash this.
Some aspects of your journey align with mine too as will for many others here and there is no doubt that you will be able one day to use our experiences to help others. I just have a feeling reading your posts that you are at the start of what is going to be an incredibly positive journey.
One particular thing you said prompted me to write as all the posts so far have covered the essentials. “ I’m always pushing myself to be physically busy.” For your body to heal you will need to learn the art of physically resting. The body cannot heal AND be in top gear. Like a car cannot be racing along whilst having its oil changed! So you MUST learn to listen to your body it’s not easy when we live in such a full on fast society but it’s essential and fundamental to your recovery. Slowing down will speed up your recovery.
I injected every other day and then I went to every day and I feel better for it. So be prepared to listen to your body because from now on you need to be working together rather than against each other.
Big hugs and I wish you a successful fulfilling life ahead.
I have also been off work. Just to unwell and couldn’t understand what was wrong with me. But gosh the injections have done wonders for me. It’s taken a while (honestly) the benefits are not felt instantly… well not for me…. And I have felt worse at times, with start up symptoms but it’s my mental health that has dramatically improved and my energy levels. I’m still on daily (8 months in) but I’m so much better and have started back at work again.
The people on this forum are very experienced and knowledgeable and just reading other people’s pitst and the responses have helped me so much. Like u say…. It’s a lonely place to be sometimes and I felt very sad and alone at times but at least I know there is a whole community of people who understand what I’m going through. And we all understand you too!
Sorry you have been having such a rough ride , and so sorry for your baby losses, 🫂, all the support and information on here will help you get through till you feel the best you can. The greying hair,,, we have always blamed my husband for that, first started going grey the week after I met him at 22. Always thought maybe that was an early warning sign 🤣
Come here my lovely girl and let me give you a big hug 🤗. Please do grieve for yourself, have a good cry, a scream, a shout or all three at the same time.
I know what complete and utter exhaustion is, where just getting out of bed and you are so drained that you have to stop yourself from falling off the toilet. So, for the moment, very little information from me apart from a very warm welcome indeed.
I break the poo taboo and on my stomach I have COELIAC tattooed. Definitely, worth getting tested for.
I am so sorry to hear all you have been through! I hope that self-injecting restores your energy. It would not hurt to also have a complete physical to know if anything else is going on. I would be a mess too if I only had shots once per 3 months. I find that even monthly results in tingly toes so I get them every 2-3 weeks. I agree with the others- keep up with every other day until you have no symptoms. Then figure out by paying attention to how you feel how much you can spread them out.
If you have neurological symptoms, you will need to have EOD injections until no more improvement is possible. I would say that this will take some time. Nerve damage is a lengthy and probably unpredictable process. Unlikely to be linear -and awakening can be painful.
I was given frequent injections (2 a week) which were 6 months later reduced to 1 a month as a maintenance dose. But first you need to be sure that you are at a level that you wish to maintain (hard to give up on former self) - and then that the maintenance frequency is able to do just that. Maintain your gains. I wasn't at a stage where I wanted to remain, so started self-injecting instead: every other day.
Meanwhile, I was being sent to consultants to sort out various problems (all of which I believed were unresolved B12 deficiency symptoms).
One of them was a senior ENT consultant, as I had saliva duct and gland problems.
He told me that I clearly had a severe B12 deficiency (with observation, not more tests), to continue to self inject every other day, not to get disheartened, to be persistant: that it would take a very long time to see changes but I would get better.
He was right. After about two years, my folate and ferritin settled at healthy levels without supplements, my MMA dropped into mid-range for the first time, even my osteoporosis reduced to osteopenia.
I think he stopped me from getting very much worse in the endless pursuit for an alternative answer, symptom by symptom, specialist by specialist. He might even have saved my life.
Me? I still think there is more to be had, but also think that I'm still improving. I am now injecting every fourth day, which mainly stops the worst of my symptoms. The improvements are often difficult to pinpoint - start a daily chart/diary, just so you can tell, even if you choose not to show it to anyone.
It has been 7 years. I now consult these old records if I need cofirmation of how much I have regained.
The burning tongue remains a constant - this, I am told, is likely to be nerve damage, possibly irreversible. I was offered Amitryptilene for 6 months to see if that might help- but I declined. I can live with that.
I'm here to tell you there is absolute hope! Do those injections daily of not twice daily. B12 is not toxic any any dose unless you already have existing kidney or liver problems. This get a kidney or liver function test if you haven't already. If those are clean.
Inject away. It's absolutely harmless at any dose of your liver and kidney function is good.
It will be a slow gradual progress but I went from bed ridden, unable to walk a mile due to nerve pain and now climbing mountains and all those things!
You found the best forum in the world for PA/b12 deficiency. Let us help you in any way we can!!! There are no dumb questions here.
We are all just patients that survived and want to help others!
PAS (pernicious anemia society) I believe created and monitors this forum. I suggest once you get back on your feet, donate to them!!!! I have and will continue!!!!
The i jections Are the best thing you can do as well as follow the threads here on this forum. People ask good questions and get good answers.
This injections when done safely are harmless. It is important for you to start injections soon. Do them daily.
Don't let anyone talk you into spacing them out.
Once you do the first injection, the b12 tests will not be accurate this any b12 tests are worthless. Better to base results clinically from your symptoms.
It takes 4 years for the b12 in your liver to get depleated this it will take a long time, 1.5 to 2 years for you to get back on your feet. The beginning stages are slow but eventually you get in a good place.
B12 is responsible for cell generation. When deficient your cells still generating. This you get brain fog, pain, numbness, etc.
If left untreated the damage and symptoms can b become permanent.
This it's vital to get treatment.
If you can't find a doc, get your own supplies and start injecting. We all buy b12 from Germany.
This backs up a lot of the claims made here which you will need to back when talking with docs.
ncbi.nlm.nih.gov/pmc/articl...
I was 190 and bed ridden with fatigue, debilitating back pain, brain fog, heart oaky and shortness of breath. Now after 2 years of injections I'm climbing mountains. I will need b12 injections for life!
This forum and the pernicious anemia society (PaS) are the best place you can find I the world for support and I do on b12 deficiency.
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