I have been diagnosed with PA and received my first b12 (Hydroxocobalamin form) 9 days ago. Folate blood level was low so I've been given 400mcg of folic acid (tablets) per day. My blood cells are normal.
Since the injection and starting folic acid tablets, I have been extremely tired all the time. More so than before the injection and starting the tablets. I stopped folate for 2 days to check if it was that causing the fatigue. I was still as tired. I've also experienced dizziness and clumsiness since the jab. Plus periods of brain fog. Though at times I feel mentally clearer than before, so that gives me hope.
I was hopeful I'd feel livelier and wondered if anyone else has experienced this fatigue after a b12 injection?
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You are very early in treatment, it takes roughly 2 to three months for blood cell to renew. You may experience worst symptoms as you say, it might be because when first starting out on B12 injection potassium levels fall, a good idea would be to eat bananas and potassium rich foods.
Best wishes in you recovery and let us know how you get on.
Thank you so much. It's a relief to hear that it can take a while. I am making sure I eat bananas everyday, and will keep on top of this and introduce more potassium rich foods.
I'm contacting my surgery because I believe they have not been following an appropriate protocol, after checking Nice guidelines. Thank you for your help.
I've never heard that either. Loading doses are loading doses, and meant to get levels up quickly regardless of symptoms or presentation.
Do you have any other neurological issues like tingling, pins n needles, bugs crawling sensation, numb patches, vision problems, tinnitus, swaying, falling backwards when eyes closed? Clumsiness can be neurological.
Is your doc aware that 30% of the time patients will have neuro involvement *without* hematological changes? And that requires *more* agressive treatment, not less. Let me know if you want the reference to the paper(s) that mentions the 30%, i can send it tomorrow when i'm at my computer.
Thank you so much. I did tell the GP I developed tinnitus 1.5 years ago, I sometimes get numbness and pins and needles in my legs and face especially around my mouth, and down my left arm. I also have neuropathic pain in my neck and shoulder, which was attributed to osteoarthritis/pinched nerve but interestingly this pain has eased since my injection. I'm going to follow this up with my surgery and would greatly appreciate the reference. It looks like I am going to have to push for appropriate treatment.
There you go - neuro involvement. Yes please push! Unfortunately most of have to.
I will send the papers tomorrow. What country are you in? I ask because guidelines & practices will differ. In the UK guidelines are very clear, others countries less so.
Also check out any of Sleepybunny's posts - LOTS of useful info.
Ok, then all the links provided by Sleepybunny will apply. BCSH guidelines say "every other day injections until no further improvement" when there is neuro involvement. Again please see Sleepybunny's post I linked above to find the NICE and BSH sites that mention this.
The papers I referred to are the following, but they are also both in Sleepybunny's posts:
- "An estimated 20% of patients with neurological signs do not manifest anaemia" is from the following paper but it's behind a paywall. If you want the full paper please send me a PM with your email address. (Also I misremembered, it says 20% not 30%). bmj.com/content/349/bmj.g52... , Alesia Hunt, "Vitamin B12 deficiency", BMJ 2014; 349
- "After the classic presentation of Addison-Biermer disease with megaloblastic anemia, many generations of doctors have been educated with the view that vitamin B12 deficiency exclusively presents itself with this type of anemia. Additional cases have been reported in which neurologic abnormalities were the main presenting symptom, with subacute combined degeneration of the spinal cord as one of the most feared manifestations,3 often leading to permanent disability. Lindenbaum et al4 reported a large series of 40 patients who had neurologic symptoms or psychiatric disorders caused by vitamin B12 deficiency but who had no anemia or macrocytosis. " From ncbi.nlm.nih.gov/pmc/articl... Wolffenbuttel, "The Many Faces of Cobalamin (Vitamin B12) Deficiency," Mayo Clin Proc Innov Qual Outcomes. 2019 Jun; 3(2): 200–214. (Freely available, not behind a paywall).
Start a logbook and monitor your symptoms. Record food, drink, meds and exercise as well as outdoor activities in sunlight. Log the time of everything.
You may see new symptoms start to show up. Rash , food intolerances, issues with drink, diarrhea. Some will be from the medication but others may have been latent and just start to appear when you are paying attention.
Your Dr will think your are a total hypochondriac when you tell him so start now and let them know what you are doing. You may eventually need more frequent injections on changes to vitamin supplements.
Sorting out the cause from the symptom is difficult because of the delay in the gut. Tiredness can be caused by many different things. Mine shows up 24 hours after getting either gluten or dairy protein (casein), or exposure to UV light like sunlight. The tiredness last until I have a large poo and get rid of whatever byproducts my body has produced.
Regarding folic acid, you might experiment taking higher doses but not more than 5 mg. Take what your body can tolerate but don’t change dosages more than once a week and monitor your symptoms with the logbook as you do.
You may also need a daily multivitamin for minerals and metals.
Some symptoms that appear right after (i.e. 3 days) your B12 injection may at first seem like you are having a reaction to the medication. These arise especially if you have become deficient again before receiving the injection. Hunger, pain, brain fog, diarrhea are all counter intuitive. But might actually indicate that B12 is working to heal tge nerves.
To monitor “progress “ with your logbook, day to day comparison don’t work because you may feel you are on a roller coaster ride. However, comparing the severity of the symptom on the same day after each injection seems to work to confirm that things are moving in the right direction. Progress is very slow. So the logbook serves as your memory especially if some neurological symptoms are impacting your memory.
Thank you. That is a wonderful suggestion and I'll start keeping track of symptoms. Yes, they seem to be 'all over the place' at the moment and keeping track may help me pin down a pattern, reactions to anything, and so on.
Martyn Hooper, founder of the Pernicious Anaemia Society(PAS), quotes several researchers in his book* who note that the presence of macrocytosis will only actually occur in about 60% of cases.Medical guidance for the treatment of B12 deficiency where there are neurological symptoms is to administer every other day injections until no more improvement can be gained by this.
[Not until the nurses complain / until the patient gets worsening symptoms]
Nerves take a long time to repair sometimes, but lack of treatment/ undertreatment can result in permanent nerve damage.
* "What You need To Know About Pernicious Anaemia and Vitamin B12 Deficiency"
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
Vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage including potential damage to the spinal cord. See links below. Your GP may find this info helpful.
"I'm told by GP I wasn't prescribed b12 loading doses because my blood cells are a normal shape."
B12 deficiency and Folate deficiency can lead to enlarged red blood cells (macrocytosis).
I think this is what your GP is looking for.
Iron deficiency can lead to smaller red blood cells (microcytosis).
A person who has both B12 deficiency (and/or folate deficiency) and iron deficiency may appear to have normal sized red blood cells on FBC because the effects of B12 deficiency on red blood cells can be masked by effect of the iron deficiency.
Do you have results for ferritin (or other iron results) and results for Full Blood Count (FBC)?
Misconceptions
I suspect your GP has some misconceptions (wrong ideas) about B12 deficiency.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
I suggest finding local guidelines for your CCG or Health Board and comparing the info with BNF, BSH and NICE CKS links.
To find local guidelines
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Local guidelines can vary from national guidance.
See blog post below if you want to know why I think it's so important to know what your local guidelines are.
If GP ever says "We have to stick to the guidelines", ask them which guidelines they are referring to, then locate the guidelines and check for yourself...
GPs are allowed to prescribe off licence if they feel it is in patient's best interests.
Links to forum threads where I left more detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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