So we have been given permission to do B12 shots at home combined with 200 mg ferrous sulphate and 20,000 of Vit D by our GP who will be doing further diagnostics in the mean time...the one thing I forgot to ask him is if there is a good time of day to take the B12 shots...morning, before bed, before or after a meal or does it not make any difference?
is there a good time of day to take y... - Pernicious Anaemi...
is there a good time of day to take your b12 shot
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Worksop1
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Hi Worksop1,
I bet that is a huge relief. I inject in the morning usually within an hour or so of waking. No doubt others will reply in time. We are all individuals so what works for one may not another.
Please do keep a symptoms diary so you can monitor progression. In the early days of treatment as your body heals, symptoms may get worse before getting better. Dr Joseph Chandy (G.P) in his book Vitamin B12 deficiency in Clinical Practice refers to this as the ‘reversing out process.’
I can see from previous posts that you are female and of child bearing age. For me, although others may be different, I require more iron supplementation and B12 at our ‘female monthly event.’ I prefer taking Solgar Gentle iron and Spatone (apple flavour which has added vitamin C) as ferrous fumarate and ferrous sulphate can cause constipation in some.
Anyway, good luck, here’s to the road of recovery and hope this is some help.
This is for my son not me...I have low iron though! His b12 active levels came back as normal but as he has all the symptoms and nothing has shown up so far for any other cause of his illness we have pushed for self treatment with the caveat its under GP guidance, obviously we are paying for it all but not really prepared to be on tenter hooks wondering how much worse he needs to get tbh. + it seems the NHS are not great at treating conditions like this even with a diagnosis. He is keeping a diary and he knows he may well feel worse for a while but I think just 'doing' something pro active is a bonus...and if it dosent work at least we can cross that off the list of things it could be!
oh sorry Worksop1,
My mistake, not realising it was for your son. I do hope you have copies of his blood test results.
Best wishes
Hello
Has your son had tests for Methylmalonic acidemia and homocysteine yet, as if he hasn’t I would definitely hold off injecting until after that.
It is important to see whether he has high metabolites (MMA, Hcy) as that will mean it is a functional deficiency. If you start injecting, it will mask this - and so may be very difficult to get a diagnosis going forward (if it is a functional deficiency). I think the effects of hydroxocobalaimin injections can potentially stay in the body for months - so if he has metabolite levels tested after you have started injections then the results may come back ‘normal’ and you won’t be able to tell if it is a functional deficiency or not.
Yes he is doing this with GP guidance and approval...I do find this attitude that you need for all these tests and results to come through before you treat the symptoms slightly odd tbh especially as his GP and private DR have both said it will not cloud any other results.
Generally speaking, in B12 deficiency patients, what happens with methylmalonic acid (MMA) is that it builds up in the bloodstream while waiting to make a link with the B12 that doesn't arrive. It can build up to quite high levels.
The MMA build-up should disappear soon after B12 repletion. So once the loading dose of 6 injections is administered, this MMA will have made it's links with the injected B12 - - and then a normal serum reading for MMA should be evident.
I say "should be evident" as my MMA was never tested until after B12 injections had been started. It was still raised, and remained so for three years, despite frequent B12 injections.
I was diagnosed fairly early on with functional B12 deficiency. Later, DNA experts could not find a genetic cause for this. But by the time I reached them, my MMA level had dropped down finally into normal range.
I have taken this as evidence that the every other day injections had eventually started working.
Measuring homocysteine levels is a good way to see if B12 injections are working. My pre B12 homocysteine was something like 17 with is really high. After my loading doses my doctor tested me again and my homocysteine level had dropped down to 8.
He has had all his blood tests done and we know have base lines for everything to compare to later down the line...and as per all the guidance from the Penicious society we are treating symptoms not test results...which show most things as being normal.
My MMA was raised, my homocysteine not. It was "normal".
So it appears that we all still have much to learn about B12 deficiency and individuality. The sooner the better.
Until then, one consultant will tell you one thing, based on one test result and the next will dispute their findings, based on another. Leaving you in exactly the same position, months and even years later.
Desperation being a far more plausible reason for so many to be self-injecting than "addiction".
So basically you can have all the tests in the world, hold off doing anything to help the symptoms in the hope something will show up and in the meantime get worse and worse, lose years of your life and still end up with the treatment you would have had right at the beginning...if only you had just taken matters into your own hands?
No, worse:
Most people are completely unaware that any of these things matter, right at the start.
I did not even know that there was a B12 to be deficient in ! Healthy people don't need to know any of this stuff. Aside from GPs ......
So most people will just do whatever they are told. My GP sent me to the nurse who got me to book up 6 injections. Around about injection 5, with no improvement obvious, I asked her what happens at the end of the next injection - and that is when I was told "usually, this is for life".
Bit of a shock.
That is probably when we say to ourselves "best do some homework" - and come here !
I did not self inject until I was in danger of losing my job- and my GP had just been told by a locum haematologist that I should not get more than 1 injection every 2 months, thereby halving a B12 frequency that I was already struggling with. I really tried to work within the system. For me, that proved impossible.
Luckily, we are all different. Unluckily, this is not generally understood by the medical profession.
I think you may be right re most people dont need to know about b12 or any other nutrients really...luckily we have got some knowledge and i certainly was aware of b12 and iron etc being important...what really has shocked me is how un helpful the nhs so far have been and how accepting they are to see a young fit and active 24 year old turn into a lethargic zombie and do nothing!...and I have to say how tolerant people on here have been going on for years and doing nothing constructive to help themselves in the vain believe the Dr will, despite it being bloomin obvious they arent....but maybe thats just me.
Maybe a bit harsh, Worksop1 .
I can understand your impatience and frustration. This is your son, after all. His wellbeing is paramount. But this will take some time. No-one can tell you how long - we are all individuals. Likely, you will observe minor improvements before he does.
The people on here are likely to be here in the pursuit of answers, some have been searching for a very long time - and some with many symptoms that prevent them doing much else some days. But they haven't given up and are not complacent.
It is constructive to fight this from within the system, to my mind, as it can change the perceptions that individual GPs and consultants have held for years - that is likely to be beneficial for all their patients found to have B12 deficiency, both currently and in the future.
It is constructive to be totally honest with your GP and consultants about self injecting. It can also be quite a brave act - GPs and consultants can tend to overreact about "overdosing". Some have much to learn about b12 deficiency, but have stopped looking at what is in front of them. It can distract them from the task of helping a patient to get well, and can often lead to having NHS injections stopped. Still there is a lot to be said for honesty: if a patient is going to look and feel better, they would want their medical professionals to witness how, when and why.
Otherwise, what changes ?
[For some unlucky individuals, honesty is not the best policy- and logical conclusions are not reached by medical professionals in charge of their care. I was really lucky to have such a good and supportive GP. Even so, I didn't tell her till the day after I had done my first injection, just in case she tried to talk me out of it ! ]
I really hope that your son finds that the B12 helps. Glad he has got you fighting his corner. Good that you are aware that there is a possibility of getting worse before better. It would be easy to think "this isn't helping" and give up on this route.
Whatever you need to know, there is always someone around to help you find answers, give you links to research, offer kindness. It really helped me through an awful time.
I don't think that it matters particularly whether your son injects in the morning or afternoon - as long as he feels relaxed, calm and can take his time. That alone can be physically difficult if he has either the shakes or suffers anxiety as part of his symptoms.
yes, hold off if you can. My homocysteine levels were good the other day, but i had been injecting daily for months when it was taken. Now it looks normal and probably will confuse docs. I dont feel it is accurate. I should have stopped injections. It all happened unexpectedly to get the test last minute. So no time. But would have been worried about relapsing too if i stopped. You want accurate readings though. Also, get IFAB test before. injecting. Although, i didn't and it still showed no Intrinsic factor. I inject every morning for energy until about 4pm, then i poop out. Naps or just sitting for a few minutes helps with fatigue.
Good luck to your son! It's good he has you to depend on. 🦋
Its not going to confuse Drs if you tell them you have been injecting daily, and I have this from both my GP and private medical cover...they really arent that daft!
The problem is that doctors can be that daft. The don't really understand PA and B12D and are liable to make some really stupid decisions. This forum is full of cases of doctors acting in a truly incomprehensible way. Be prepared for anything.
Hence why I find it beyond comprehension that people hold off feeling better in the believe the Dr's are going to find an answer after performing endless tests...when in reality in our situation he just needs to feel better.
Hello! When I first began receiving injections, I would get them in the morning and feel bad enough to be in the bed by the evening, so starting out this may be something to keep in mind while planning the injections. Once I felt better and levels were steady, I no longer felt sick. I inject hydroxo and I have done it at all times day and night—never noticed a difference. Unfortunately, the doctor who found my low b12 did not order MMA before treatment but my GP did run the test after receiving injections to make sure they were working and they were—MMA was low—so there is value in this test after treatment. I agree—focus should be for your son to begin feeling better as soon as possible. Prepare him to feel worse before he feels better but that just means healing has begun. Adequate treatment is life changing. Best of luck!
^ This. I supplemented prior to a test where I suspected I was developing a B12 deficiency with neurological symptoms and told them such. Instead the GP diagnosed a B12 "overdose" and sent me away taking a prescribed dose of B12 that was 1/30th of the minimum requirement to sustain life - a dosage that, even if healthy, would have eventually resulted in my permanent disablement (and eventual death?). I didn't die but I did collapse 2 years later with severe neurological symptoms which had been untreated for 2 years due to medical ignorance about how to test for and treat B12 deficiency, whether supplementation affects the test result and whether overdose of B12 is possible.
Im sorry to hear your symptoms got so much worse and your GP was wholly useless, its quite scarey really to think what would happen if we couldnt take things into our own hands...or have some body on our side prepared to battle for us when things get to over whelming. Im not sure my son would have had the energy to be so pro active as its mainly be me who has sourced help and B12 shots etc. He has had 5 every other day so far and along with ferrous sulphate and vit D at a mega high dose he is actualy starting to feel better already...all with the full knowledge of his Dr but none of it prescribed by him!...who seems to think its fine to wait and just see how he's feeling after 8 months of going rapidly down hill. I did say how bad does he need to get and his reply was , if he feels seriously unwell please feel free to call for an ambulance!
we are back on Friday for more blood tests and results etc as we think he may have a wheat intolerance aswell but as far as anything else is concerned its a case of sorting it out yourself tbh.
Indeed. My final GP diagnosis before I sought private treatment was of a "mild" B12 deficiency for which I was recommended to take 1000mcg a day. In fact, at that point I was putting in between 5,000 to 10,000mcg of tablets just to stave off symptoms and the nerve pain in my hands was so severe I could not lift a kettle. After a few weeks of this ungodly nightmare I found a private Clinic who diagnosed a severe deficiency and started with twice weekly injections. I cannot self inject due to hand tremor, nerve damage from the "mild" B12 deficiency i guess LOL. Whats not so funny is that damage like this could be permanent and was exactly the fate I saw coming 2 years ago and trusted the doctors to test for/treat to avoid it. Its just infuriating.
For some supplement advice, please see my treatment guide : healthunlocked.com/pasoc/po...
Agreed! When I was at my sickest after discontinuing injections for three months, I could barely drive to see my doctor. She took one look at me and said that she could send me for bloodwork but the fastest way for her to help me was to give me a b12 injection, which she did. Three days later I had begun to feel some relief and called her office to thank her for helping me. It’s pretty simple-if the injections help once you can get past that initial suffering—bingo—there’s your answer—b12 deficiency. My doctor ran one IFAB which was negative and told me that no further testing was necessary since treatment is the same but that I would need shots for life. I wish I had known more sooner. It would’ve saved me a lot of suffering over the years. Live and learn!
Can I ask why you stopped taking the shots, was it because the GP stopped doing them or was you worried about self injecting and like we keep being told masking other stuff?
Sure thing. My low b12 was found by a gastroenterologist after I was referred back to him by my GP because I had severe acid reflux symptoms despite taking a PPI. He recommended surgery for a hiatal hernia which I refused after having a few other unrelated recent surgeries. I asked about the risks of continuing on the PPI, which I have been off and on for long periods of time since my early 30’s due to gastro symptoms. He was surprised to find my b12 was on the low side. I had not shared all of my symptoms with him because I was there for gastro symptoms. I didn’t think it was related to the fact that I had become so lethargic over a few years that I was struggling to get out of bed despite being only 45 years old.
Oddly, my low energy had become normal to me and I was also dealing with intense grief after the sudden loss of a sibling. I had no mental health history and believed this to be grief-induced depression. I had begun to experience early b12 deficiency symptoms at the age of 38, about a year after the birth of my second child in the form of severe migraines. I was initially misdiagnosed with PMS.
I was suffering horrible upper back pain from acid reflux in early 2016 that was keeping me awake at night and I was losing weight. That’s all my gastro knew. He ordered two monthly subcutaneous cyano injections after my b12 came back at 282. I felt a marked change in my energy level and mental state in only about 24 hours after that initial injection, but a week later I was exhausted again, so I started supplementing with 1000mcg methyl sublingual as well.
When I shared with the doctor that I had been supplementing sublingual daily in addition to the two monthly injections, he told me that I was probably going to have to go back on injections. He did not explain to me at the time that based on my bloodwork, that he knew I wasn’t absorbing the sublingual. I knew nothing about PA.
Since PPI’s can be a cause of low b12, I became convinced that if I could get off of the PPI, then I would be cured and could just supplement orally. I began to supplement with high doses of methyl sublingual—5,000 mcg per day but I just kept getting worse. The decline was rapid but I was so convinced that I was cured that I became hyper focused on the type and dosage of b12 that I was taking—this seemed to be to the point of mania. I thought the methyl form was causing my symptoms. I was nearly out of my mind, relentless anxiety and I was suffering from severe dizziness. It was scary so I called and got in with my GP a couple of days later.
Somehow it had finally dawned on me even though my mind wasn’t working right—that it might be the b12? I told my doctor after she gave me the injection that something was very wrong with me and that if the injection didn’t work, I’d be back in her office right away because I was suffering horribly. It only took 3 days to begin to feel better (though full recovery was delayed and took years due to an inadequate injection schedule) and we had our answer. My doctor said that though PPI’s do cause some vitamin deficiencies, such as b12, they do not result in the severity of symptoms that I was experiencing, including neurological. She is satisfied that I have PA based on my physical and mental state without an injection for 3 months and the fact that I got better on injections. She did a lot of research on my behalf. Though she treats many geriatric patients with b12 deficiencies, I am her only patient with PA. Other than PA, I am very healthy with no other medical issues. Btw, b12 injections drastically improved my acid reflux symptoms.
I still struggled for a few years to get adequate injections, which varies from person to person. I could never have fully recovered without weekly injections and that seems to be the magic number for me in terms of a maintenance dose. Though I will say that treatment is not perfect. Some weeks I feel like 7 days is too long to go without an injection while other weeks, I feel like I could go longer than 7 days. It’s just not a perfect science—I wish it was.
The tricky thing for me was that I felt so much better on biweekly injections that I was brushing off existing symptoms thinking that was as good as it was going to get until I went on weekly injections and a whole new world of recovery opened up for me.
I have been injecting hydroxo IM for 5.5 years and learned to do so because I was starting a new job and couldn’t take off an hour a week to get injections at my doctor’s office. It was empowering and I am so glad I did this as there was no interruption in my treatment due to the pandemic.
Long answer, I know, but hopefully my story helps your son and others on this forum, which I wish that I had known about in the early days. Unfortunately, I was in the dark for way too long but fortunate enough not to suffer from untreatable symptoms—so I am lucky!
Thank you for explaining your story, certainly sounds like you have been through the ringer but Im hoping you are at least more in control of your health now, ty for sharing.
That is quite the experience!! Wow mcg-woo. You sure went through a lot to finally get where your are. I'm glad you have finally found a maintenance level. Thanks for sharing all this info. It really helps to know others are experiencing similar journeys. 🦋
EllaNore, Thanks and you’re welcome!
It was a tough experience and it continued to be tough for quite a while until I finally received adequate injections. I just wish I had known more prior to treatment when it felt like I was losing my mind and didn’t understand why? The experience definitely gave me real insight into mental health issues with which I had no previous experience. It does help to know that others have shared the same journey.
I have been in a really good place with no significant symptoms for a year but it really has taken a long time to get here as I’ve had some setbacks along the way.
Though weekly injections work well, I do occasionally feel like I need a booster dose or two, but I haven’t nailed down a pattern just yet. Like I said- treatment is not a perfect science and I feel like I’m still learning!
I am lucky to have a doctor who listens to me and cares how I feel instead of being obsessed with unnecessary lab work. The thought that frightens me is that one day she will retire and how will I find a knowledgeable , caring replacement? Scary thought but at least I know through this forum that other options exist if that becomes necessary.
Edited by admin
It seems strange that your doctor only has one person with PA in their practice
Yes, that’s correct. That is what she told me. I was asking her questions, trying to understand how common of a condition PA is as I’d never heard of it before my experience. This is not surprising considering I am the youngest patient that I have ever seen in her waiting room. She is an internal medicine doctor who specializes in geriatrics. It is my understanding that typically PA is diagnosed in people in their 40’s so this would make sense based on her patient population.
Edited by Admin
I understand now - not a regular GP. That makes more sense. A specialist very familiar with B12 deficiency symptoms, I'd imagine. But not necessarily due to PA ?
Still surprised me.
Pernicious anemia is a rare condition. It occurs in 0.1 percent of the general population and 1.9 percent in people who are older than 60 years, according to a 2012 studyTrusted Source in the Journal of Blood Medicine.
Maybe the figures are so low as its so poorly diagnosed? Would be nice to think its that rare but I doubt B12 deficency in general is alot higher though not all will be pernicious obviously. My GP certainly seems to thinks its a lot more common in the general population than people may think...how many are fobbed off aswell.
True - misdiagnosis a common problem.
The first study of patients' experience of PA diagnosis and treatment, a Pernicious Anaemia Society survey, was published in 2014. Almost 900 people with diagnosed PA were involved in this survey. It revealed some surprising statistics :
44% of all respondents were incorrectly given another explanation for their symptoms. Misdiagnoses included ME, MS, IBS, thyroid conditions - but by far the greatest number (16%) were told they had "anxiety and depression".
14% of all respondents had to wait over 10 years for a PA diagnosis, 40% of all respondents waited between 1-5 years.
While Andres and Serraj (2012) have stated that PA is prevalent in 0.1% of the general population and 1.9% in those over 60 yrs, Martyn Hooper (founder of PAS) believes these figures to be quite far short of the mark. Until there is either a more accurate means of identifying PA or a willingness to look for a cause for B12 deficiency in patients -or both - there is as yet no way to arrive at a true figure.
I think a lot of GPs, once they qualify, don't bother keeping up with new developments in medicine. I think mine would be lost without the NHS website. He looks up everything. And then orders the relevant blood tests.
You sound a very sensible person with the same attitude as me. It was me that found out via lots of research what was wrong with me not my GP. Luckily I can absorb B12 orally via passive absorption. If I had to rely on him for injections I would still be very ill.
You are doing absolutely the right thing by taking matters into your own hands. As you can't overdose on B12 you are doing your son no harm. And you may be preventing permanent damage. It's a win win situation.
Exactly!! and TY for understanding and not just spreading a sense of doom...if the ferrous, Vit D and B12 dont make him feel any better ita t the very least something we can cross off the list but as the GP can find no cause for his symptoms and we know he is low on iron and Vit D whats the harm...having what is considered 'normal' B12 may well be not enough for him but if not he will just pee it out lol. Worth noting aswell he is 24 years old, has 3 horses and has a very active lifestyle when he is feeling well so he may well need more than somebody sat at a desk all day and mooching about at home to feel what he considers 'normal' but would probably exhaust most other people.
Just a quick update charks...saw his GP yesterday, he had all his bloods taken again and a proper review of previous tests...nothing is low or higher than it should be so he's doing a coeliac test as he thinks he may have the first signs of this...+ learnt something new about a condition callled silent coeliac which in essence is where you dont get the obvious signs such as swollen belly, pain etc but you do have all the feelings of generally feeling very tired etc. We have told him in the meantime he is getting B12 shots and ferrous sulphate and Vit D and will report back when we collect his latest blood results as to if its making any difference (or not)...he is of the opinion the tests dont match the symptoms and though he wouldnt prescribe anything atm Im not totally bothered by this as we have the available funds to do this privately and he hasnt told us not to.
Thanks for keeping me updated. I think what your doctor is calling ' silent coeliac' is B12D by another name. Celiac's often have neurological symptoms. They think it is a gluten reaction that causes them. They are partially right. There is a connection. Gluten damages the parietal cells so they can't absorb B12. When celiacs stop eating gluten the parietal cells repair themselves over time and they can absorb B12 again. Here is an article explaining how it happens. drpeterosborne.com/gluten-s...
Regardless how you son got B12 deficiency he needs treatment now.
Ty, I will have a read of that this evening...yes I do believe its all interlinked but thats more from a 'gut instinct' perspective rather than actual medical training...though it seems lots of info is out there. The one thing that raised my alarm bells a little bit was when I asked 'do some people need more B12 than others to feel 'normal' and is it the case just because his results are within normal the symptoms saying otherwise means we maybe should keep an open mind'...his response was no if its showing as normal his symptoms cant be associated with B12 or any other nutrient defiency...the one good thing was he didnt object to him doing his own B12 shots though he was of the opinion it was probably a waste of time/money. Hence why we will be letting him know if and when there is any improvement!...I really hope there is even if its only to show him up abit!
Do you know what his levels are? Some doctors seem to think ridiculously low levels are normal ie. sub 100. A lot of recent studies suggest that the reference range in the UK is too low. That 200 to 300 should be considered borderline.
His active levels are 98, we had that done privately a few weeks ago, the results for the NHS test arent in yet but he had them done about 4 months ago and they deemed them normal...will ask exactly how 'normal' when we go back next week...was quite a lot to get into a 10 minute slot tbh!
I try to inject before bed. The injection seems to make me a bit worse for a while re dizzyness if I have it in the morning so I let it do its work while I am asleep.
Ty thats worth knowing, how long have you been taking them...i wonder if the dizziness settles down after a while?
I have been taking every other day for about 2 months. There is some improvement.
are you taking anything to go with the B12 to aid absorption etc...my son has also been told to take 200mg ferrous daily and vit d 20,000u twice a week for 3 weeks and then drop down to once a week
My first few injections, I found they made me tired. Then after the first 4 or so I noticed I would get a bolt of energy and be a little jittery. That has worn off though I don't get that feeling. I typically inject during the first few hours of the day and after I've had a shower so that my muscles are nice and warm/loose.
He had his first one yesterday mid day with no obvious effects but he did say today he felt a bit jittery!
I do mine when I am ready for bed. I am nice and relaxed so there isn’t usually any difficulty plus I will be alone so no audience. It has worked well for the past 280 injections.
hi there as he had is folate checked if not he should.
I had low folate and I was told to have that sorted first as having b12 jabs can mask it.I have b12 jabs at doctors every 4 weeks.All the best for ur son
I think feeling jittery is good. I think it is because your body is producing more energy.
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