My 22 year old daughter started hydroxocobalamin injections for the first time yesterday for pernicious anaemia and she told me afterwards she felt pretty bad and very tired. Although she had been feeling tired with other neurological symptoms for over a year before, she said she felt even worse after the first injection.
I wonder what side effects are to be expected and how long it takes before these subside, do they disappear and when do patients typically start to feel better with a course of alternate day injections and when do the neurological symptoms typically associated with B12 deficiency start to disappear? When should we know whether the injections are working or not?
Many thanks
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Chenders
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Definitely it's pretty common to feel "pretty bad and very tired" when you first start injections after a long time of deficiency. You body has to work to start healing itself. I think the duration these sort of symptoms last are different for different people, and some may not experience that at all. Just keep on with the injections, I'm sure your daughter will start noticing some improvements soon.
the worst part of PA and b12 deficiency is this, even most doctors don't have any information about it and they can't understand it. even my family can't understand that. Why no media tell people about this problem and how to stop deficiency. they don't tell how people can suffer because of PA and b12 deficiency. even legislatures don't facilitate conditions to help people like me who suffer alot. this PA and b12 deficiency with neuropathy is like a hell which its prevention is much easier and has less cost than ignoring that.
That's a sign it is working. For some people, they experience instant relief from their symptoms and then further doses just keep helping them improve from there.
For others, it gets worse for a while before it gets better. She should see some improvements quite quickly.
In my case, I've never had the neuropathy symptoms heal without pain.My feet and fingers were numb before, but then they started burning and eventually that stopped and feeling returned. This isn't an uncommon nonoccurence.
But the fact that there's a reaction at all says it did something. Someone without a deficiency wouldn't experience anything.
Her body was working at a deficit and now she's experiencing what happens when it immediately spends the b12 in her system on repair.
We can't really give you an exact time frame on when this will pass but it will. Hopefully she feels better soon.
Sammyo23 every time I inject my symptoms get worsen like first day but improvement is not tangible. But I inject cyanocobalamin maybe hydroxy works for me but just wondering why symptoms get worsen like a hell if its not helpful
Welcome here. Good your daughter has started injections. Yes, it’s quite common to feel worse than better during loading doses. I had as others will report. Dr Joseph Chandy, retired GP, wrote a book called Vitamin B12 in Clinical Practice calls this stage ‘the reversing out process’. Nerves repairing for example sensations such as burning, static or formication (feels like insects under the skin).
Unfortunately, with regards to PA/vitamin B12 deficiency and (neurological) symptoms, we don’t always have the same. So, it’s important that your daughter has a list of HER current ones, tracks daily to be aware. To see progress.
Healing length of time MAY depend on length of deficiency, how deficient they were to begin with and age. It’s really subjective.
Another thing that can happen is an out break of acne/spots on the face and sometimes body, my daughter was 20 when she was diagnosed and found the outbreaks quite distressing. Luckily it stopped after about a year but it was upsetting for her at the time…. She has her injections every 8 weeks
B12 is needed in the production of red blood cells and many other cell types. When people are short of B12 all this production and repair that should have happened but didn't will start up when more B12 is available.
Since red blood cells are made up of more than just B12 there can be other ingredients that get used up in the production of lots of new red blood cells.
One of those ingredients that can run low is potassium. You can either do a search for potassium-rich foods and eat/drink them or you can take a potassium supplement in some other form. For info on hypokalemia (low potassium in the blood) see this link :
I once got hauled off to hospital because my heart was going nuts and I had a lot of chest pain. I was checked to see if I was having a heart attack but I wasn't. I got hold of the results of the blood tests I had that night, and one of them was potassium which was right at the bottom of the range. I have no idea why. I just remember that I felt awful.
You might want to try an adrenal cocktail to get more potassium - but please always do your own research before trying anything like this. Always be very careful when taking potassium - too much can disturb the heart rhythm.
Thanks very much humanbean we will be on the lookout for arrhythmia and I will also give my daughter a banana to eat every day and we shall also use LoSalt to cook with and sprinkle onto food because it is potassium chloride rather than sodium chloride.
Has GP considered other possible causes if PA has not been confirmed?
There are other possible causes of B12 deficiency besides PA including diet, coeliac disease, exposure to nitrous oxide, some drugs and medicines, damage to terminal ileum (part of gut where B12 is absorbed), internal parasites such as fish tapeworm, H Pylori infection etc
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested and people with a first degree relative with coeliac disease.
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Low dose cyanocobalamin tablets (50 mcg) are sometimes prescribed for dietary B12 deficiency. My understanding of UK guidelines is that severe dietary B12 deficiency should be treated with B12 injections.
There are moves across UK to put more patients onto high dose oral cyanocobalamin tablets (1000mcg) as an alternative to IM (intra muscular) injections.
This is sometimes promoted as easier for the patients but cynical me suspects a cost cutting measure. Although there are some forum members who manage on high dose oral B12 tablets there are many who find them ineffective.
Each CCG/Health Board in UK is likely to have its own local guidelines on treatment/diagnosis of b12 deficiency. I suggest you or your daughter tracks down the local guidelines for her area and compares them with BNF, BSH and NICE CKS links in this reply.
Some local guidelines have been posted on this forum.
Try a search of forum posts with terms "local guidelines" or an internet search using "name of CCG B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy of or link to B12 deficiency guidelines being used in local area.
It's worth knowing what you're up against locally as some local guidelines are unhelpful.
I hope she is not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in the future.
There are forum members who have had their B12 injections stopped unexpectedly.
Best piece of advice I ever got was to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxocobalamin link for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Misconceptions
I mentioned at start of post the value of doing some B12 homework...many health professionals have some misconceptions about B12 deficiency and it's a good idea to have some evidence to refute any ignorance you meet.
I have children who are in the same age range as your daughter and I sincerely wish that she gets the treatment and understanding that she needs.
PA can run in the family so may be worth passing any info you think might be useful to other relatives especially if they have symptoms consistent with B12 deficiency.
I think B12 deficiency from PA and other causes is massively under diagnosed in UK and elsewhere.
Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg more about causes of B12 deficiency, more B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
Hello Nackapan thank you for enquiring - how are you?Well it has certainly been some journey which I am delighted to say has ended in success - although there is some way still to go yet. My daughter is finally getting alternate day hydroxocobalamin injections until there is no further improvement in her symptoms and she is responding, but it is taking time. To get to this point has been a monumental exercise and very challenging indeed. Doctors believe they are being scientific, but their unwitting trust in what are normally reliable information sources has led to downright dangerous outcomes and a world of suffering for some B12 deficient patients. They need to go back to trusting in their own eyes and ears.
Luckily for my daughter my own background is in the Pharmaceutical Industry where I was a senior executive - I have a biological sciences degree and I was also a medical writer for a number of years, so I 'speak their language.' All of which enabled me to apply my skills to her case. Basically her GP prescribed her fluoxetine (Prozac) for depression/anxiety/fibromyalgia. Her blood tests had shown a deficiency of folate and serum B12 but with normal: MCV, full blood count, ferritin, liver function, thyroid function and Hba1C, (so there was no macrocytosis) and of course pernicious anaemia is extremely rare and is much rarer still in the young.
Back in the day I was senior medical writer in the UK and one of our accounts was the antidepressant Seroxat which was a competitor to fluoxetine, so I am very familiar with Prozac and it's issues. I therefore proposed to my daughter's GP that we investigate the possibility of potential underlying dietary factors which might be contributing to her symptoms and first correct these and then only move onto Prozac if she continued to remain symptomatic. I reassured her GP that I would do all of the research and the legwork, which he agreed to. I then looked at a range of dietary factors that were linked with anxiety, depression, fibromyalgia and made sure everything that I proposed was evidence-based and 100% backed up by clinical references. Then we started introducing these.
To cut a long story short, this path eventually led me back to B12 (notwithstanding the fact that she was receiving daily 100 mcg oral B12 plus folate, her serum B12 went back into the 'normal' range and her blood indices were normal). My gut feeling was telling me that her myriad symptoms were indicating something that was affecting her at a very fundamental level. I therefore looked for symptoms that might help differentiate between depression syndrome, fibromyalgia, rheumatic disease and B12 deficiency because there is considerable overlap of symptoms between these.
Part of this involved compiling a list of tell-tale symptoms for B12 deficiency. I then met up with my daughter in the garden (we were distancing) and went through the list together and the rest is history as they say. My daughter ticked all of the boxes: sensitive feet, tender tongue, photophobia, balance problems, mouth ulcers etc, which serve to help differentiate it from depression syndrome and fibromyalgia. This was the breakthrough moment.
But there was still the puzzle of her normal blood results of course and so I then spoke to a clinical scientist in a company that carried out B12 testing and enquired how accurate these tests are, after first describing to him my daughter's symptoms. Perhaps unsurprisingly he swerved my question on the accuracy of their tests but raised some red flags concerning my daughter's symptoms, at which point I decided to drop everything else and do a deep dive into the scientific and medical literature on B12 and it's deficiency over several weeks which turned out to be most alarming, particularly the possibility of permanent neurological damage, both physical and cognitive. I became familiar with the issues that many on this forum already discuss.
Next it was a case of changing the mind of her GP which I was very well qualified to do of course coming from a medical/marketing background! However this was far from easy because you are essentially taking on the medical establishment and challenging fixed beliefs and protocols and despite my pharma/medical writer experience I am not a doctor, so there was credibility to be established first by framing everything in a medical way backed up by clinical references. Initially all went well, but GPs and surgery staff have limited time and here was I essentially trying to upturn the applecart which was testing their patience. At one stage I even felt I was becoming persona non grata with the GP surgery, but at the end of the day my daughter's health was at stake and I was not entering a popularity contest.
It's a story which I hope will have a happy ending for my daughter. Time will tell. I am presently writing everything up for my daughter's GP as a comprehensive case study and timeline of my daughter's journey from symptoms to diagnosis and eventually receiving the correct treatment, with all of its learnings. I should also like to help the journey of other sufferers. So when I have completed it I shall talk to the PAS about the possibility of featuring it on the website (with everyone suitably anonymised) so that others might benefit from these learnings. It may well represent a typical patient's journey from complete ignorance to awareness with all the problems experienced along the way in dealing with GPs, haematologists, neurologists, changing attitudes, getting MRI scans and blood tests in what ultimately turned out to be an arduous but successful exercise.
As a result of these learnings my daughter's GP told me that this case has led them to identify a cohort of patients within the practice whose clinical needs are not being served effectively and they are therefore now revisiting these patients in order to improve their quality of life.
What I would say at this point is never give up. If you resolutely keep pushing at a door and unfailingly backing it up with solid evidence, never wavering along the way, then the door will finally open...then close, then finally open again (in our case)!
I regret I cannot really answer any questions at this stage because I want to spend the time that I do have completing the case study and timeline which I hope will eventually be of benefit to many other sufferers and give them some ammunition when dealing with their own doctors.
Best wishes Nackapan and to all on this great forum.
She will feel worst in its body repairing its self, and healing is she taking folic acid 5mg, folic acid works along side B12 joke B12 wake up group on Facebook
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