Background: Diagnosed 9 years ago with ME and fibro (b12 not tested). Been bedbound since but was slowly getting a bit better, then got covid and I never really recovered. Also have no working pituitary since birth.
Asked for doctor to do blood tests and came back with b12 at 194. Was told to take supplements (which I knew were unlikely to work as have had v bad ibs for over 20 yrs.)
Started injections meaning to take it slow at once a week as my body hates change and is exhausted. Have just moved to every four days. Have had 4 injections in total. Am taking Methlyfolate (400ugh) and Spatone and eating bananas!
I feel worse than I have in years! All over pain, tinnitus is screaming, exhausted, weak muscles, can’t concentrate or think. stuck in bed. Horrible!
would you stick at every four days to give my body a chance to adapt slowly or just move to EoD?
Thanks, Catherine
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Pepperpots302
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It sounds to me that the injections are starting to work . It often occurs like that once nerves start waking You could try O.E.D .Just keep injecting !
I am very sorry to read. Every single one of us are completely different. Several things jump out at me, the extremely poor functioning of your pituitary gland, COVID and severe IBS.
So, you see an endocrinologist ? They are the specialist and that’s their area of expertise.
You were diagnosed with IBS after investigations ? I do hope they excluded coeliac disease, gluten sensitivity, lactose intolerance, fructose intolerance and Small Intestinal Bacterial Overgrowth.
Some of us can be deficient for a long time or severely. So when injections are started the nerves can start ‘waking up’. So, we can experience painful symptoms and feel worse.
Keep a simple symptoms tracker, a ‘voice note’, video, text on technology. Such as ‘banging head, bad tinnitus, exhausted, weak muscles, bed’.
I see you take iron and your potassium is coming from bananas. Some of us take a multivitamin/mineral as well.
It is early days, it does take time and 9 years ago you were diagnosed with ME. Then fibromyalgia. B12 is not a quick fix by any means. It can be a slow process. It is having to take each day as it comes. You know your body better than anyone. If your body can only tolerate injections every 4 days then that is you. Likewise, I only know me.
Also, we all want recovery and for it to continue. When we relapse or ‘crash’ because we have done too much, we have a tendency to be rather miserable. It is however long back in bed. 😞
I hope that helps.
Sleepybunny will be along with their wonderful advice too.
Thank you so much. I was tested for coeliac years ago, but I have no support from endocrinologist or GP unfortunately. No other tests have been done. I’m really hoping that b12 will eventually allow me to have some sort of life back, even if it’s limited. I am lactose intolerant but had to work that out myself.
As has been said, how much B12 we need is based on our individual needs. As I life-long ME sufferer, I started self-injecting about 10 years ago, and noticed an immediate improvement. I did the six loading doses every other day for a week, and have found that I start to need a top-up around every four weeks. I inject 1000 ug.
Other things that have helped me a lot are Water Kefir, vegan diet, getting my thyroid treatment optimal, getting up early and going to bed early, and regular exercise.
Hi Pepperpots302 as others have said it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.
I am not a medically trained person but I'
I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 51 years.
That's good - There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Hi, regarding fibro you might want to look into Trimethylglycine or Betaine as it's otherwise known. It helps to modulate homocysteine levels (which is a big part of what B12 does as well). My mom's had fibro for 25 years now and this supplement helps her pain level dramatically. It's very cheap as well. Prohealth has a good one.Hope that is helpful : )
That is very interesting. It seems to be a relatively unknown remedy but when I look at research on homocystein betaine seems like it plays an important role in the bodies homeostasis. Underexposed, probably because it's a low cost supplement. Interesting stuff, if anyone else has experience with I'd love to hear about it.
I was told 3 years ago I had ME (Which is just a b12 d in my opinion). Injected daily since, went organic, eat and drink as well as I can. I also supplement best quality products, 2 years ago could not play 3 holes of golf. Now I run around 18 holes carrying a full set of clubs, walking dog straight afterwards for an hour. I have unlimited energy.
That is incredibly helpful, thank you! I don’t expect full recovery because of other health conditions but I at least want enough energy to have adventures in my powerchair!
I am getting injections 3 x week, if you self inject every day I am wondering where you inject so as not to damage the same area with frequent injections if IM ?
Shoulders and thighs, I spent over 2 years just doing shoulders but later found out thighs must easier. Some people inject IM 2 times per day with no issues.
I suspect many diagnosed with ME, actually have B12 deficiency.
Many on here report getting worse before starting to get better. It can take a long time to start to see improvement especially if you have been ill for a long time.
Might be worth keeping a symptoms diary eg track severity of about ten symptoms daily or weekly. Can be useful evidence to show doctors. It's hard to see improvement from day to day but easier to see if you compare month to month or year to year.
Do you mind me asking which country you are in? Knowing this may help people to post useful information.
A few links that might be useful.
What to do next if B12 deficiency suspected or recently diagnosed
This next link from above document outlines recommended treatment patterns for B12 deficiency in UK and also when people with B12 deficiency should be referred to neurologist/haematologist and gastro-enterologist.
In UK people with B12 deficiency with neuro symptom are supposed to have more intensive treatment than those without neuro symptoms. If you have neuro symptoms eg tingling, pins and needles, brain fog, migraine, twitching muscles, incontinence, balance problems, clumsiness (there are many other neuro symptoms) look at pattern "For people with neurological impairment".
I urge UK forum members to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
Try a search online or search forum posts here or submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used in the area and for a link to or copy of them.
Help for GPs and health professionals
1) PAS website has a page for health professionals.
There is no charge for health professionals to join PAS as associate members.
I did wonder if you were in Gloucestershire as that area has a poor reputation on this forum as to how B12 deficiency is managed. See blog post below which mentions B12 treatment in Gloucestershire.
I want to relay my personal story. I hope it gives you hope as many others here have done for me.
I too was diagnosed with ME many years ago. In 2020 was diagnosed with "mild" b12 deficiency. Mild my arse. I was 190 like you and was bed ridden from the fatigue. Taking a shower took every bit of energy I had. No amount of rest or sleep would help. I inject daily with 1mg of cyano Daily. They say hydroxocobalamine is only needed every other day but it wouldn't hurt to do daily.
Once a week is not enough. Whenever I tried to space out the injections, the symptoms would come back.
You will get pain all over the body intensely at some point for about a month. This is what everyone here is talking about when they say, "it gets worse before it gets better". Don't stop I jections during that time. The pain occurs because the nerve cells that died and could not regenerate due to lack of b12 are now coming alive, but all at once; this, the intensified all over the body pain. That is your body healing. It will die down. The more frequent the injections the faster you will heal.
I'm that being said, it takes 4 years for the b12 stores in the liver to deplete, this it will take time to recover.
For me. After a year of daily I jections, I could do more like 1 mile walks. Back pain and brain fog improved. Then after 2 years I'm living a normal life, working hard like I used to (10-12 hour days) and climbing mountains. There is hope.
While you recover, it takes patience and self love. A lot of people will judge or misunderstand you. IGNORE them and give yourself a hug. Reach out here. The good thing is, you have a record of low b12 and that confirms the problem. and there is a simple answer: injections. We don't have to go through expensive or suffer through horrible treatments like cancer, but then again, this is no easy road!!!
Thank you so much. It means a lot to hear your story, especially as you had a similar level to me - which I was told was only slightly deficient (despite me telling them all my symptoms). A future where I could walk for more than five minutes would be incredible. I’m only 46 - I miss ‘living’!
I did and still do periodically because PAS runs this forum. The info PAS provided and the support here saved my life.
Yes, you will be able to walk more than 5, but until then give your self a lot of love. Do as little as possible. I still had to work during all this but I was fortunate to not have lost my job.
Sometimes when you first start you get what is called reversing out syndrome. Your nerves are waking up and you feel worse but it passes and you get over it.
Glad that you are using methylfolate along with your B12. Some do ok with folic, but not all. You may find this interesting, although it doesn't look at methylfolate, just increased doses of folic. ncbi.nlm.nih.gov/pmc/articl.... As you will read, some do better with other cobalamins as well as other folates. Best wishes
B12 is important for breaking down homocysteine which is important in managing what your describing. In my mothers experience vitamin D supplementation has been extremely helpful. Also avoiding winter if thats in the realm of possibility.
My personal experience (and of others I know) is that physical symptoms worsen at the beginning. Is this nerves coming back to life?). I don’t absorb and (after trial and error) have settled on once a week. If I leave more than that the peripheral neuropathy returns. I have no medical training. Best wishes.
194 is not that low. Once a week should be enough, in my opinion. As others have mentioned, sometimes some symptoms become worse initially, especially pain when we inject as the nerves start waking up. Good luck.
Neurological symptoms (which you have) should be treated under the guidelines for neurological damage which is twice weekly in Europe or every other day in the UK, until no further improvement. Serum B12 is not a guideline to proper treatment.
In the absence of supplementation, serum B12 will roughly reflect how much the B12 is deficient in the body. In this case, the neurological damage is because it has been deficient for quite some time.
For treatment, B12 reaching the cells should be high. Since the person already has some B12 stores, I do believe that once-a-week will give a high b12 to the cells immediately for nerve repair. For lower B12 stores, it may take more time for the stores to build up on lower doses and hence, a more aggressive injection schedule initially may help...
Neurological damage takes time to heal, often in weeks, if not months, and in my experience, once-a-week gives as much relief as more aggressive treatment. I am not convinced that the UK guidelines are the best, as the problem with more aggressive treatment is that the body can get used to the higher dose and then, it becomes difficult for many to reduce the dose, which brings back the symptoms. Once-a-week is much easier to wean off.
One should note that one only needs 1mcg/day and max upto 5mcg/day even for those who cannot absorb B12 at all from the gut. 1000mcg/day or EOD is really an overkill. As far as I have observed with my body, if you want to do it every day or every other day, a much lower dose at 50mcg/day or 100mcg/EOD (injections, not orals, as only 1.2% of an oral dose is absorbed) gives sufficient B12 for full relief and is much easier to wean off. Lower than that will take time for the body to build up sufficient stores and will start acting after some time, but this much dose starts acting fully immediately.
yes, I also followed the advice given on this forum, but actually felt worse than when I was on weekly 1000mcg injections. Worse, when I tried to reduce, all the symptoms came back. Slowly, I have reduced to 50mcg/day and feel great. My goal is to slowly reduced it to 10-20mcg/day, as that is all that the body really needs daily.
Actually, there is one more problem with higher doses, as the body is totally dependent on the injected B12 and the liver storage cannot supply such high B12 amounts when needed. Thus, if one misses a dose, or needs more B12 temporarily (which happens in any kind of viral infection such as covid, hot and humid climate, increase of thyroxine dose, stress, heavy exercise etc.), then the stores cannot help and one will feel the B12 deficiency symptoms. I am telling you all of this from personal experience and also the experience of those on this forum that do high dose daily or EOD injections. In fact, I totally crashed once when we moved from a cold place to a hot and humid place and it took several months to recover. Ditto when I tried to increase my levothyroxine dose.
Hence, I do not suggest anything more than 50mcg/day injection of any type of b12 or a weekly 500mcg hydroxy/methyl injection (cyanocobalamin does not get absorbed much in higher doses, so weekly 1000mcg cyanocobalamin can be used). Personally, both these schedules gave me very quick results (as in feeling the improvement within a week and much better in a couple of weeks. Non-neurological symptoms, such as extreme fatigue, fainting, lack of appetite etc. went away first).
I am sorry I am confusing you, but I have suffered a lot in the last 3 years due to B12 deficiency (to the point of not being able to go to work for at least a year or so), due to incompetent doctors and wrong medical advise. Treating B12 deficiency properly is not properly understood in the medical community unfortunately and I have had to experiment a lot to figure out what works and what not.
Regarding weaning away from B12, please see the US treatment schedules, as they do have the concept of weaning off and gradually reducing the injection frequency, unlike Europe, and I do think the US schedule is better. If you want to follow the US schedule, please note that the schedule is meant for cyanocobalamin and not for hydroxy or methyl. The human body reacts differently to different B12 forms and they are not exactly the same.
>>One should note that one only needs 1mcg/day and max upto 5mcg/day even for those who cannot absorb B12 at all from the gut. 1000mcg/day or EOD is really an overkill.
This is incorrect. Even if the amounts were changed from mcg to mg.
>> the problem with more aggressive treatment is that the body can get used to the higher dose and then, it becomes difficult for many to reduce the dose, which brings back the symptoms.
This is not an established fact or even a theory.
>>if you want to do it every day or every other day, a much lower dose at 50mcg/day or 100mcg/EOD (injections, not orals, as only 1.2% of an oral dose is absorbed) gives sufficient B12 for full relief and is much easier to wean off. Lower than that will take time for the body to build up sufficient stores and will start acting after some time, but this much dose starts acting fully immediately.
This advice is in conflict with my personal experiences and many others who post here. And in conflict with current research.
Have you considered that your current regiment is now appropriate for you as your body healed during your three years of self-treatment?
>>One should note that one only needs 1mcg/day and max upto 5mcg/day even for those who cannot absorb B12 at all from the gut. 1000mcg/day or EOD is really an overkill.
This is incorrect. Even if the amounts were changed from mcg to mg.
>>>
There is plenty of research and research papers that show the actual requirement of B12 to be 1-2 mcg. Please see this:
>> the problem with more aggressive treatment is that the body can get used to the higher dose and then, it becomes difficult for many to reduce the dose, which brings back the symptoms.
This is not an established fact or even a theory.
>>>
This is what I have observed repeatedly and consistently with what happens with me. You will find that there are many people on this forum who have difficulty reducing their dosage. They think this is because that they need so much B12. I don't think so. I think it is just that their body has gotten used to it.
The medical community largely ignores this and that is the problem. The mechanism of how the body might become used to a particular B12 level of supplementation is one of the unknown things, like many unknown things in medicine. Perhaps people will discover it after a century. Who knows?
<<<
>>if you want to do it every day or every other day, a much lower dose at 50mcg/day or 100mcg/EOD (injections, not orals, as only 1.2% of an oral dose is absorbed) gives sufficient B12 for full relief and is much easier to wean off. Lower than that will take time for the body to build up sufficient stores and will start acting after some time, but this much dose starts acting fully immediately.
This advice is in conflict with my personal experiences and many others who post here. And in conflict with current research.
>>>
What is the current research? There is just this guideline from NICE that people should inject EOD till neurological improvement. US says one should inject 100mcg every day for a week and then 100 EOD for another week and then 100mcg twice a week for a few weeks and then monthly. If research was so clear, everyone would be agreeing on one schedule. Isn't it?
<<<Have you considered that your current regiment is now appropriate for you as your body healed during your three years of self-treatment?
>>>
No, from my observations, this conclusion would be totally wrong and it would take a very very very giant leap of total blind faith to believe this theory and would be a case of trying very desperately to fit data to a theory.
I was better off with once-a-week. Following the NICE guidelines, I went to EOD. Then tried to reduce to twice a week. Took a hit but then stabilised. Then again reduction and very bad state (much worse than how I was doing at once-a-week schedule). Then reduced gradually. Sorry, but the wrong NICE guidelines misled me. May be it is fine for people who want to be on EOD injections for life (even there, I have doubts as I have cited other problems with such heavy dose injections), but for others I don't think so.
I see that you inject 3x a day. May be it works for you. As far as I am concerned, not needed and not optimal either.
am111 " In the absence of supplementation, serum B12 will roughly reflect how much the B12 is deficient in the body"
This is absolutely not the case and is disproven by many accounts in the medical literature and the experiences of many forum members (including myself). Active B12 represents only a small fraction of serum B12 so serum B12 alone cannot always accurately detect a deficiency even in theory.
But besides this, there are many case reports, for example those in the paper, "The Many Faces of Cobalamin (Vitamin B12) Deficiency)" which illustrate that serum B12 cannot be relied on to exclude deficiency.
"Patient E" had a serum B12 of " 301 pmol/L" but suffered subacute combined degeneration of the spinal cord and was unable to walk outside her home. Because treatment was insufficient, she only made a partial recovery.
Functional B12 deficiency can exist despite a normal or raised serum B12. Some members have had this experience.
It is dangerous and irresponsible to claim that serum B12 is an accurate test that can exclude deficiency. It may lull readers into a false sense of complacency which may have serious or even permanent disabling consequences.
There is no gold standard test for B12 deficiency.
"although elevated MMA and HCys concentrations may be indicative of vitamin B12 deficiency, normal concentrations of these biomarkers do not rule out deficiency or a favourable response to cobalamin therapy."
The frequency of treatment should be that which is adequate to treat symptoms and guidelines are as I stated above. Whether or not you can or should reduce treatment frequency should be based on symptoms.
If you have no absorption issues it may be possible to reduce to maintenance levels but that may not be the case for those with PA. There is no problem to reduce frequency if it works better for you, I certainly did so, but I dont have absorption issues.
But what works for you may not work for everyone so you are not in a position to claim that once a week will be enough for this person.
The patient was treated for macrocytic anaemia, so it is possible that she was already taking some B12 supplements that could raise the serum B12 levels. It is not very clear from the paper. Very high MMA and homocysteine mean that she obviously had very low active B12. The paper says:
"This case is a classic example of how the assay for serum vitamin B12 can be wrong because of interference of the assay by IF autoantibodies."
Assuming she was not taking any B12 supplement, it appears to me that this is not a common case if true. In any case, I agree that serum B12 is not a clear marker for B12 deficiency. There are other reasons why B12 can be normal and people can have B12 deficiency, for e.g. transcobalamin problems, but such things are rare. MMA test being unreliable is news to me. As far as I understand, this is not probably common.
In any case, I am not at all convinced that the NICE guidelines regarding the treatment are correct, due to the reasons I have already mentioned in this thread before.
Not a medic. I use the methodology of take more than reduce as predicting the effects of injecting are not known. I find no reason not to do a trial of EOD other than fear. For me that is not enough injections. I started with EOD and increased.
Yes the first time was from 1 mg hydroxocobalamin a day to .5 mg a day per a hematologist. Cost me a month of my life. When taking 1mg of cyanocobalamin weekly the pain in between injections was debilitating.
Your understanding would be ground breaking if you were correct.
Were you hospitalized or bed ridden? What was your B12 level to start. What caused you to start supplementing at all?
I think you reduced and that led to problems. It takes time for the body to adjust to a lower dose and then stabilise. Also, I have found that it is very difficult for me to reduce the dose of hydroxocobalamin. Methyl is slightly easier. Reducing by half suddenly is too drastic. I had problems when I reduced even from 100mcg/day to 87.5/day.
What were you taking before weekly cyano injections? You body could have become used to a certain level and 6th or 7th day would be bad. I think if started from scratch, you would probably not find this happening.
>>
Starting level 140 few years back. Did some supplementation to feeling normal, but left after test came high. After some time, very bad neurological problems - brain stopped functioning and extreme fatigue. Passed out once and thought I was going to die. With tablets of 750mcg/day methylcobalamin, gradually improved. Doctor misled me and did not think it was B12 deficiency (test done after 3 tablets of B12 taken and came normal) and I took the tablets just as a trial as my symptoms were getting worse and nothing else was working. I was kind-of OK on 750mcg/day oral (functional, but still had a very bad brain fog), but crashed when we moved from a cold place to a hot and humid one. Obviously, my body had adjusted to a certain dose, but couldn't supply the higher B12 required in the new climate.
Went on weekly injections, then EOD. Tried to reduce and then problems galore. Twice hospitalised and several months bed ridden.
Finally, started daily 100mcg cyanocobalamin injections that I have gradually reduced to 50mcg now. Almost cured now with this schedule.
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