Had b12 loading doses still feel awful after a week
B12 injections aren’t working - Pernicious Anaemi...
B12 injections aren’t working
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Elleeee
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clivealiveForum Support
Hi Elleeee
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and Vitamin B12 help your iron to make red blood cells and to function properly
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I am not medically trained but there are others on here who will be able to advise you.
Thankyou I just thought i would have start to have seen some improvement as it’s been a week since I finished the doses. I still feel very unwell
Are you supplementing with Folic acid? Do you know what your level is?
My dr said the levels are fine everything in my bloods came back fine apart from b12 which was 45 I am only 18
Anyone at any age can develop a B12 deficiency. Has your doctor given you any ideas as to why your level is so low?
Is he running any more tests?
What is your diet like? Do you eat meat, fish, eggs, poultry, dairy produce?
Are you on any other medications which may affect absorption via your stomach?
Yes I’ve had a Celiac disease test and a instrinc factor test both came back positive, they have no idea why it was so low they are referring me to a haemologist. My diet is fine I eat meat etc. And no not on any other medications. I was premature when born so they think Maybe this could be something to do with the deficieny
The Intrinsic Factor Antibodies test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
Is there anyone in your family "bloodline" who has Pernicious Anaemia?
Hopefully the haematologist will get to the bottom of things, in the meanwhile I wish you well.
No nobody in my family has it. This is why I’m real worried there is something seriously wrong with me , thankyou
I've been on B12 injections for 46 years and I'm still "clivealive" and over 75.
Don't worry too much. It will take a time to rebuild your reserves of B12 .
Take care now.
Thank you very much for your replies
You are very welcome - please come back and let us know how you are getting on. There are lots of people on here who will help.
Thankyou, one more thing is it normal for me to feel really ill with this defiency everyday
Wow Elleeee that's a hard one to answer.
We are born with several years store of B12 in our liver which normally gets "topped up" every time we eat animal products which I listed above - meat, fish, eggs, poultry, dairy etc.
As these food travel down our digestive system the B12 is "grabbed" and carried down to the very bottom of the stomach to the Ileum where it is processed through into the bloodstream and thence to the liver to "top it up" again. B12 is used by many functions of the body so the store has to be replenished but the daily amount needed is really quite small.
For some reason you may have stopped extracting the B12 from your food so like a car with a broken fan belt to drive the alternator it's battery doesn't get charged and the car won't "go", so your liver's store of B12 hasn't got "recharged" from your food and hence the need for you to have it injected directly into your bloodstream.
As to how long you are going to feel ill - sadly there is no easy answer as a lot will depend on how long you have been B12 deficient but for you it is still very early days and the important thing is that you are getting the B12 injected.
When I was told in 1972 (probably before your Mum and Dad were born) that I had P.A. I was given two years to live unless I ate raw liver three times a day or had B12 injections for the rest of my life. Now I like baked liver & bacon with onions and gravy but RAW? No thank you!
I opted for the injections and I'm still "clivealive" and over 75.
Goodnight for now. I really do hope you start to see some improvements soon.
Nhs is ZERO trained in vitamins and minerals, so it is VITAL to find out what your folate etc NUMBERS are
Terms such as yr fine, within range is utterly meaningless
B12 is used in a lot of systems in the body, but different people vary as to which systems are affected most by a deficiency - so your symptoms could be due to different side effects. One common side effect is macrocytic anaemia in which your red blood cells are larger and rounder than normal - this will take a while to rectify - a few months.
It isn't uncommon for people not to notice any really improvement for several months (this was certainly my experience).
Suggest that a) you make a list of the symptoms you have - and as B12 deficiency can go on undetected for a long time don't rule out a symptom because you have had it for a long time
pernicious-anaemia-society....
b) keep a diary bearing in mind all the symptoms - it is easy to miss improvements because you hadn't realised they were symptoms.
Hope you start picking up soon though
Apparently I don’t have anemia, everything in my bloods came back fine apart from a really low b12 level I am only 18 so I’m really worried
Unfortunately anxiety is one of the symptoms of B12 deficiency.
Absorption problems can hit anyone at any age though they do get more common as you get older. B12 is a fascinating subject - I could bore for England on it. May be you would find that reading up on it a bit more so you understand more of what is going on helps.
Martyn Hooper who is the chair of the PAS - the organisation that sponsors this forum on Health Unlocked - has written several books on Pernicious Anaemia and B12 - this is a link to information on his lates book - I haven't read this particular one but the earlier ones that I have read where very readable.
pernicious-anaemia-society....
I found out that I had low B12 when I was in my early 50s and it took me over a year to figure out what that meant because I didn't know where to get information - and that can be very disempowering - now I can actually train my symptoms back over time - some going back over 40 years.
Whilst it is scary to be diagnosed with a condition, B12 absorption problems are easy to treat and it doesn't need to affect your life, in fact I would have to say that I struggled with issues like anxiety and depression for so many years until I got my B12 levels to where I needed them that it was actually what gave me a second lease of life.
Thankyou so much but is it normal to still feel so ill even after loading doses
I didn't have anaemia either when I was diagnosed.
B12 deficiency does make you feel really unwell ... and as Clivealive says people don't always notice any difference with the loading doses. I know I didn't notice any improvement during loading.
It’s been a week since my final loading dose injection is it still normal?
It took another week after my loading doses to start to feel better ☺.. Don't dispair... You'll get there 😊.. All the best for the future ☺
Give it a chance takes sometimes a month depending on how bad you have it or how long you have had it ! I take iron and folic acid too! Do I get injections ? If you have been diagnosed from a doctor then injections are the way to fix it not pills !
I get injections I’ve finished my loading doses. My b12 level before injections was 45 so I had it bad
I felt absolutely awful after my loading doses! What symptoms are you having?
I have really achy arms, nausea, and Just generally feel really ill, bad constant headache, Just feel the same as I did before the injections
I hope you feel better soon. I'm not the best person to give advice on this (still finding my way, feel better than I did and now self-injecting) but there are some "experts" on here who have been dealing with the deficiency for a long time. If you need to ask more questions do a new post as older posts tend to get neglected. Arm yourself with knowledge from reputable sources. Get plenty of rest! And also I hope you have enough support from family/friends while you're not feeling well, this b12 thing is tough and a bit of a shock to the system.
Best wishes xx
Hi, here's my tuppenceworth. That you feel dreadful is a good sign. Worsening of the symptoms is called 'reversing-out syndrome', and is as a result of all the systems of your considerably complex bod coming back to life and beginning to coordinate.
For what it's worth, I had been sub-optimally healthy for three decades with so-called 'normal' blood results. To cut a long and complicated story short, I started on B12 injections, loading doses of 1000mcg subcutaneously every other day for several months. That's how long it took me until my symptoms stopped improving. And boy, did they improve.
I take a combination of B vitamins with folate orally along with the injections; folate ensures maximum uptake of B12, and I take sublingual B12 drops containing 2000 mcg of B12 on non-injecting days. I now have injections about once a week or fewer. Of course your common or garden GP would probably have a hysterical episode if you either asked for alternate day injections or told her/him you were self-injecting (mine did - she looked interesting purple) but the point of this missive is simply to reassure you that very often recovery from chronic B12 deficiency takes time, and often a long time at that.
By the way, B12 is highly water soluble and according to Dr Chandy, the unsung hero of B12 supplementation on this site: b12d... you can't od. People suffering from carbon monoxide poisoning are routinely injected with 5000mcg as treatment.
Don't give up and take heart - this is fixable.
All the best.
Thankyou so much. I was just worried because my doctor said It’s not normal that I still feel ill and I should be feeling better now.
I think that you are about to learn that, by and large, doctors' knowledge is limited. There's so much known about so many illnesses nowadays, doctors cannot have as extensive a comprehension as they once had. In other words, you need specialists with courage
I would encourage you, like the others above, to read about the condition and begin to take control of your treatment. Whatever you decide, I wish you all the best. x
Elleeee, my daughter was in her mid twenties when she was diagnosed with B12 deficiency and PA. She has, since then, had two boys now 21 and 23, run a household, developed an infant playgroup - still running -, supported her husband through a serious head injury, worked part-time in a very responsible post for an international bank, kept chickens and a cat and all of it with PA and IBS. I know she felt dreadful many times over the years because she couldn't get a priority appointment for her injection when it was due so she has self injected for the past 10 years. Now just past 50 she is a fine looking woman with a full head of hair and excellent complexion. She is a real power house, now working as a school receptionist and loving it, and finds time to go walking with her old dad and take mom shopping as well as several other crumblies she meets up with weekly.
As others have said there is life with B12 supplimentation so look forward to what I am sure will soon be a full healthy lifestyle.
Elleeee• in reply to
Thankyou for your reply I feel as though I will never feel normal and well again but you have reassured me
• in reply toElleeee
Oh Elleeee I do hope so. Our daughter was really low before she started her injections, sometimes going to bed for several days on end. We were all very worried for her. There have been times whilst she has been on B12 when she has been very poorly, usually because she couldn't get an appointment with the nurse. Also one of the GP's told her she should know she needed the injection and wait a week before she had it - fortunately he has since retired. Ever since she began self injecting those sort of problems are behind her and she has her mom reminding her when the next one is due well before it is. She has been fine and if you end up with even half her vitality then you will run your friends and family ragged trying to keep up with you.
Elleeee• in reply to
Thankyou! I am back at the doctors tomorrow to see what my b12 levels are now a week after my loading doses. Then the dr said I will have to have them every 3 months. Did your daughter have loading doses, if she did, did they make her feel any better? They have made me feel 100 times worse x
• in reply toElleeee
It is such a long time ago Elleee but I think she did feel better after the loading doses as I did when I had mine. See what your GP says tomorrow.
Hello, I felt exactly the same as you, at one point I really felt like I was going to die, I had read a lot about how b12 can make you feel worse, every symptom I had seemed magnified a hundred times over! I read tons on another site called Phoenix rising, and also tons on a site called mthfr.net, perhaps not all the same illness, but all taking b12, so this is what I done, I was taking folic acid with my b12 as advised, so I bought methylfolate and took one when it arrived, omg felt great after about an hour, so realised thus is what I needed, but there is a chain reaction that goes on when taking b12, soon realised I needed potassium, I was scared to use potassium as everybody scares you with it, so after a few weeks the b12 and methylfolate ceased working, so I added potassium, just take one when needed, found a product called optimal electrolytes by seeking health, when you take b12 and folate it produces new cells rapidly, if you don't have enough electrolytes, the cells die, so defeats the object, also came again to another road block, started to take a really good multivitamin, I take vitabiotics well woman, I feel fantastic, don't get me wrong have the odd day, but when I was well I had yuk days, I don't take the methylfolate every day, but you learn when you need the extras
So glad to know someone knows how I’m feeling, where do you get the folic acid tablets from? Thankyou so much
Im going to have to agree with lizreds1. Potassium and folate. I get weekly b12 injections, except when i stopped because i was getting tested fir IFA. I have had 18 injections over last 5 months. I felt better but still unwell. Achy muscles, fatigue, brain fog, heart palpatations, feet getting tingly. When i get my 4700 mcgs of potassium i feel better after only 3 to 4 days. We just dont get close to the amount we need daily and when getting injections our cells need it! My potassium level on a blood test refects as 4., so well within range. It doesnt matter. Potassium helps. Im not suggesting over supplimenting. Just get the 4700 mcgs needed daily and see if you feel better. It might take you 7-10 days as you had more frequent injections than i did.
I wish you well.
I felt great for a fortnight after mine then the symptoms came back. I cannot get a gp to listen to me. Have seen three different ones now and they all say the same thing, my health problems are caused by depression. I hope you get a better chance with someone who will listen and help you xxx
Hi I have just come back from a family holiday or I would have replied sooner. I felt like the doctors were killing me until about two weeks after loading then felt fab for about eight weeks then had a couple of weeks a bit hit and miss then had another injection and went back to feeling like I’d been killed for a week. Now I’m fantastic again have just been to euro Disney and did all the big rides . Have found coconut water really helps after injections but have to hold my nose to drink it . Good luck you’re so young I am sure it’ll all come right . Take care🤡
What is your folate level number? If your folate level is low, then it will not allow the b12 to be distributed around your body, and gets simply excreted out when you urinate
There is also another cofactor (that I forget the name of at the mo) which is also important to be not low, otherwise that also affects the distribution of B12
There also 4 kinds of anemia, folate being one of them
What kind of b12 are you using? How ofton? Have you been tested for the MTHFR gene mutation as methyl b12 should be used
The serum b12 is not an accurate test of b12, as it only has a 45% accuracy, and so can ofton give either a false negative or a false positive, and for any chance of accuracy it takes 4mths for b12 to leave your system before you should test for it. Therefore constant testing via the serum b12 test is pointless
You need yr homocystine, folate and the other co factor to be tested all at the same time, and I think the time scale is less then 4mths that is with the b12 serum b12 test
The NHS only does the serum b12 test, but you can do the other more accurate test by going direct to a lab
Elleeee Ive just finished my loading doses last week and still feel absolutely shocking. My expectation was that I would feel better straight away.....just crashed and burned. Headaches and a dizzy numbness in my head, almost like a neck pressure headache all the time. I have just joined the PA society. I was sure I was going mental 
Ive always been upbeat and positive with nothing really to worry about, but these injections was like opening a cage of demons, my thought patterns are all over the place and I cant concentrate much on anything and just feel exhausted and want to be left alone. Just wanted you to know your posts and those others that have responded have given me hope on this. Still at the start of the journey
I've had blood tests done my b12 folate is 2.1 the doctor wants to retest but I've had no further information can anyone help with this
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