Hi, I'm suspicious that I may have really low B12 but the doctors haven't been able to identify that. My CBC's are normal but I can feel the pain and damage to my nerves. I struggle with gait/ balance and seem to experience seizures from time to time. I struggle with a lot of anxiety/depression and huge emotional disturbance. Everyone thinks I'm crazy and just need antidepressants. It feels like I'm dying or am near death. I don't eat and barely drink from a severe loss of appetite. I feel lost and afraid and just want to give up. I don't have the money to test myself out of network and have been supplementing b12 so I don't know if it would be best to wait a month or so in order to get a more accurate representation of my b12 levels. My pcp won't be seeing me until July and I feel terrified that I won't make it that long. My health is on a severe decline and I just don't know what to do anymore.
Afraid of Permanent Damage/Dying - Pernicious Anaemi...
Afraid of Permanent Damage/Dying
Sorry about your issues - I had similar and didn’t wait for any tests or visits to doctors after I realised my symptoms were so close to B12 deficiency.I felt like my body was shutting down and I was dying. I self injected B12 and within a couple of days felt so much better. The suicidal thoughts just stopped like a light switch had been flicked. I guess the downside is that the doctors won’t recognise I had a B12 issue now - they told me B12 injections were a placebo but I can manage it myself anyway. Good luck with getting your health back.
Gosh I’m sorry that your in such a bad way and I know how difficult it is to get anything done when your so low . It does sound that you might need to lol into antidepressants. I’ve been that low myself and I take it “one bite at a time “ deal with one thing at a time in bite sizes. It can be overwhelming when you have so many things to deal with . You could also try social services, not sure what your situation is but give them a call and ask for a social worker to be assigned to you . They could help you sort out a few things . You must eat and drink . Good luck
How did you get B12 injections without a prescription. I'm tempted to do the same but feel worried that there's more to it than that. I think I have absorption issues since I was recently on a high protein keto diet in which I consumed only red meat everyday as well as 1000 mcg of b12 in pill form. It doesn't look like it helped because I seem to be getting worse. Some of my most recent new symptoms are feeling cold all the time no matter how hot it gets, shortness of breath from standing and walking to the restroom, extremely low heart rate at times, after I eat I feel extremely tired and will fall asleep while sitting ( which I feel suspicious may be more of a loss of consciousness than sleeping.) I don't know just how low I am but I think I'm reaching critically low reserves.
Have you had your thyroid checked, being cold, low pulse ,weird body pains and breathlessness on exertion are also possible signs of low thyroid. Your B12 status would be hard to evaluate on a routine blood test if you have recently been supplementing with high dose b12 so you would need more in depth tests /investigations. Folate deficiency can also present with similar symptoms to B12 deficiency and one can mask the other. You may be best to go to A&E dept if you feel you are dying and get a raft of tests done because there are other nutritional deficiencies that could be making you feel so bad, even thiamine deficiency would affect gate and balance and as you are not eating or drinking much you could be low in all sorts of nutrients. I hope you do get some medical assistance and find the root cause. I have been in a similar position of not being taken seriously etc as kept presenting with so many random body pains and symptoms but after having the right blood tests the cause was found.
Do you know if B12 supplementation would throw off an MMA test? I've been to the ER 4 times and they don't take me seriously/ shrug me off. I feel afraid because I'm only getting worse and don't know what to do. I did get my thyroid checked which is on the lower end of the normal range but I don't think that could cause demyelination, nerve pain.
They are all interlinked because without good thyroid levels it is harder to absorb vitamins minerals . I would not know about the MMA test... sorry. Take your health in hand and start with excellent nutrition, if you can't eat you can get meal replacement drinks that contain all the vitamins either prescribed by gp or source them yourself. Get some nutritional yeast (amazon ) it is good for b vits and thiamine and some b12 liquid drops (amazon, if they have good reviews)and folate just a recommended one for daily value. If you can save up then you could try and get some private tests run. It is a catch 22 situation though because supplementing does scew test results.
An excellent, balanced answer. Thank you.
Some of your problem with that as your diet, as with any extreme intake, is that the processes that use B12 are dependent on a huge range of vitamins and minerals for them to work properly - and it needs B9, folate, (from leafy green veg and peas, etc) to work at all.
That's why a balanced diet with as many nutrients from a wide range of sources as possible is essential.
Not only do they recommended a minimum of 5 portions of fruit and veg a day but if you can get it from at least 30 different things across the week that will really help. Wholegrain cereals also provide a superior source of good quality fibre which has huge benefits - far beyond what they seem to offer on paper.
Unless you are achieving a diet with all these things then there's every chance that you are actually killing yourself by plain malnutrition.
What digestive tract issues do you have which suggest that you have problems with it? Do you think if you ate a really good varied diet, with lots of good things to drink - juice, soups, squash, teas, etc, you would still have the same issues?
I was eating leafy greens and vegetables on keto. I don't think it's my diet. I was eating broccoli, romaine lettuce, and spinach every day.
That sounds good! And tasty! Thank you for your reply.
If that's the case then it does point to some sort of problem and it won't hurt to try B12 jabs anyway. I appreciate your frustration in that it would have been good to test you before you supplemented but in the long run, the important thing is you get well ASAP. If you keep up a good diet (even more important if you don't absorb nutrients well) and do your B12 jabs - and possibly take a broad spectrum multivitamin and mineral supplement too, then you've given yourself every chance.
I so hope that all helps for you. If it does it will give you a better chance of getting to the bottom of what is causing the problem in the first place. I discovered my problems were caused by chronic pancreatitis as well as genetic deficiency problems but there are lots of things that they ruled out too.
I ran a post a couple of months ago about causes of B12 deficiency besides PA and lots of people contributed to it. It was amazing how many things make us prone to it.
I hope you find a solution to your problems soon and please let us know how you get on. Good luck!
I'm sorry to hear you are having such a difficult time. I know you have not had your MMA levels tested - and it's just a thought, but from what I have read around the subject I think high blood MMA levels cause a lot of the traditional vitB12 deficiency symptoms (blood MMA levels are high with vitB12 deficiency, PA and also functional B12 deficiency (although with this last one blood vitB12 levels may be normal). (I have a diagnosis of functional B12 deficiency).
From all that I have read, MMA seems to be produced within the body, from particular amino acids (from protein) that you eat, and I understand that it is possible to reduce the levels of MMA in your blood by reducing the amount of these particular amino acids that you eat (they are isoleucine, threonine, methionine and valine). A diet largely consisting of red meat will be very high in these amino acids - if you do have vitB12 deficiency, PA to functional vitB12 deficiency then I wonder if this may be causing your MMA levels to rise (resulting in worsening symptoms)?
I am not medically trained (I have just read around the subject); but if it was me I would stop the red-meat-only protein diet, and switch to one that was closer to a balanced, vegetarian diet for a period (maybe even only a week or two?) to see if that improves the situation? I would also keep a food diary, (if you do adjust your diet) so that you can report back to your health professionals if it seems to have an impact.
Good luck, and hope things improve soon.
I did the same in my case I experienced assuming megaloblastic aneamia but never investigated by my GP ant further and I started to take B12 and after a while started injection but still I don't know what's the cause of my severe symptoms and talked to to neurologist to rule out MS probably progressive one. But my symptoms developed so fast and almost symmetrical on both sides of my body but recently I noticed my right leg is much more infirm. And after one year treatment my symptoms developed in my arms but now symptoms a little improved. My double vision really is so bad and my my muscle got so weak even when I sleep my intense treatment started almost four to five months ago. I have too much pain. I have already done bloodwork for sjögren's and other autoimmune disorders. I have visited neurologist once and done some other tests still no diagnosis. My muscle weakness is phenomenal and developed pretty fast just in a matter of months. I'm so worried what type disorder is that
It sounds like the majority of your problems are due to the way you are treating yourself.
If you really want to get well then you can, quite easily. The big question is do you? Do you really want to simply get well and get on, or do you, secretly, want people to think you are more unwell than you are (and I'm not doubting that you do have problems) and so do things to look after you?
Do you want to look after yourself and get well or do you want others to do it for you?
If your problem is a physical one and you are looking to get better then the first thing you can do is to increase your fluid intake.
Make a chart or fill up bottles of juice to make sure that you have at least 2 litres (4 pints) of non alcoholic drinks every day and take small drinks very frequently.
Have small meals with as many good nutrients in as possible - including red meat and fish - and snack on fruit, nuts and seeds, and vegetable pieces/chips in between.
This will make you feel several hundred times better than now and mean that you are in a better position to tackle any underlying issues.
Alternatively it might be something that antidepressants can help you with and if that's so then go for them. If you want to get well, do whatever helps you get there!
Good luck with it and let us know how you get on.
May I add that when you are nutritionally starved your brain does not work properly.This can cause mental health problems.
Please start by drinking and eating .
Then you wi think better.
I wish you better.
Get help to shop if needed to get out of the hole.
Yes, exactly! Thank you. X
Hi,
Have you asked your doctors if you can try a course of B12 injections?
I'm not medically trained.
I haven't since I had not fallen into the suspicion of it until recently. I was on a high protein Keto diet for 6+ months in which I ate nothing but red meat and on top of that, supplemented with 1000 mcg of b12. Despite these efforts, I still seem to be getting worse which leads me to believe that I will need B12 shots because I think I have an absorption issue. I'm thinking about waiting a couple of weeks, since I recently supplemented with 5000 mcg of B12, and then going to get an MMA test done since I heard that it's the most reliable way of getting more leverage towards a diagnosis. I've watched the videos on B12 deficiency and how it can go undetected because CBC's come back normal which is my case. I feel incredibly stressed out and emotionally disturbed and angry. I'm seriously considering suing the hell out of all of the doctors that have "treated" me as well as Parkland Hospital for negligence and malpractice.
Before you do that, I suggest you try a balanced diet because they might turn it back on you. Any extreme diet is likely to cause terrible trouble with your body and you might lose your case.
Lots of vitamin and mineral deficiencies cause all sorts of mental anguish and anxiety - it's how we've evolved over the millenia to "worry" us into going out and foraging for the nutrients we need.
By all means do B12 jabs - they won't hurt you - but they won't solve the problem without good nutrition with them.
Ok, but how can a poor diet lead to nerve damage/ nerve pain if it's not a B12 deficiency? I was eating terribly two years ago and the time before that, nothing but fast food. It wasn't until last year that I began eating healthier. I went from eating a diet with lots of fiber and nutrients but stopped because I came across Gundry's Lectin theory and how it causes inflammation. So I switched to keto in order to combat and lower inflammation. As far as I can tell, it helped, but it has been suggested by a nurse that I come off of it. I just feel worried about feeding myself sugar even if it's natural and from fruits.
A keto diet is not healthy.Producing ketones can make you ill.
My friend ended up in hospital with pancreatitis after this diet.
I'm not medical.
I totally agree - the whole point of the "keto" diet is in effect poisoning your system and I feel it, along with other fad diets, should be banned to protect the more vulnerable people in society who can be excited by extremes and hype. 😔
In reality, as you so well know, anything other than a properly balanced diet with as many sources of nutrients as possible, is less than optimal.
It can because all our cells need a huge range of vitamins and minerals to be able to carry out the processes they use to function and replicate.
An extreme example but... I have a friend who is missing the ends of several of her toes where she had a severe gut issue resulting in her being unable to absorb potassium which lead to such severe neuropathy that the ends of her toes in effect died. The part of her gut that absorbs B12 is fine and so her B12 levels are good but she needed all the things required for the nerves to function.
You cannot look at any nutrient in isolation because they all require the interaction with lots of others to work.
The elements - iron, potassium, sodium, calcium, hydrogen, oxygen, etc - join together with others to form compounds - for instance things like water, magnesium chloride, calcium carbonate - and these in turn are used by mircrobes, plants and animals to form more complex things like vitamins, fats and oils, sugars (from simple to very complex), and proteins, which are the building blocks of life. These in turn are combined together to form very specialised and complex compounds by certain species which can have very targeted effects if eaten, for instance Curcumin, the phytochemical component in turmeric, or Omega-3, found in fish oil, fatty fish, flaxseed oil and walnuts, which have anti inflammatory properties.
Some things our bodies can make (synthesise) from the basic "ingredients", such as vitamin D, if we get enough sunlight on our skin, but over time we have evolved to use many of the basic building blocks available in a varied diet, rather than having the ability to make them for ourselves.
While some species have specialised in eating grass (herbivores) and others meat (carnivores) and their bodies have adapted to enable them to get a full range of nutrients from their limited diets, man has evolved to be omnivorous to make best use of the nutrients available from eating a wide range of plants, meat, fungi, etc. Generally we, as a species, have colonised places where fresh water is readily available so we have no special adaptions to cope without it - unlike sea fish, camels, cacti, etc - so we need to drink plenty all the time to survive.
Our evolution has taken us in a direction of advances over others so that we can ultimately eat more of them, and get more nutrients to advance more, and so on.
But this evolution towards brain power and dexterity has meant that our bodies need more complex ingredients and rely more heavily on being able to get what we need to survive from what we eat, rather than specialist body adaptions - eg rumens in cattle and sheep which break down a diet of grass and through the rumen microbes provide a source of B12.
Because the adaptions to make the more "magical" components that we benefit from in our diets (such as the vital anti inflammatories) are very specialised, we need to eat a wide range of things to get the widest range of benefits.
The same applies to amino acids, the building blocks of proteins. We can have a protein rich diet but if it is from a limited food type which is missing one of the 9 essential amino acids we will become very sick and potentially could die - one of the reasons why vegan diets can be dangerous, despite all the fruits and vegetables they eat being very good for you if taken in conjunction with animal products - meat, dairy, fat and eggs.
Sugars! Another essential nutritient but one that has a huge range of variations. They are all carbohydrates and so are a compounds made up of carbon, hydrogen and oxygen. They basically come from plants using the colour pigment, chlorophyll, to combine water and carbon dioxide, using sunlight for the energy to make this happen. The simplest one is glucose but this can be joined together, by processes in plants, with fructose (fruit sugar) and galactose, to make sucrose (our everyday sugar in bags), starch (potatoes), cellulose (the soft structure of plants - and some cellotape!), and lignin, the woody fibre of plants (the indigestible part of our food which forms the essential fibre which makes our guts work and reduces the risk of colon cancer - and makes trees!). Lactating animals can make lactose (milk sugar). Fungi can break down complex sugars to simpler ones.
While basic refined white table sugar only provides us with energy, all the other ways of eating sugar - in fruits, vegetables, seeds and nuts, eggs, dairy products and meats, etc, all come with so many added benefits in the way of vitamins, minerals, the special compounds, and fibre, that eating them is an ideal way of getting the energy we need to live into ourselves. A lot of the special compounds - antioxidants, anti inflammatories, etc - are built around a basic sugar unit too, so please don't avoid them: they do so much good for you. It is much better to eat them for the good they do than avoid them - and we need energy to run all the chemical reactions in our bodies, such as nerve transmission, to prevent neuropathy.
I know I can go on and on but I hope this gives you a basic introduction as to why it is important to eat as wide a range of foods as possible.
And to keep all these nutrients flowing readily around your body to every cell - including those at your extremities to prevent nerve impairment - with plenty of fluids.
Please fire more questions at me if you want to know more about the things I've missed!
Thank you for your interest so far - I wish you well as soon as possible.
Wow, thanks.x
Thank you! x
I was diagnosed with depression for many years and all kinds of antidepressants were tied - none worked. Then I collapsed one day and collected by an ambulance and had a red light drive to the emergency department. They quickly gave me whole blood and saved my life. Whin days they confirmed I had pernicious anaemia and gave me loading doses and I then had top ups every three months - that wasn't enough and my GP agreed to once every two month yet would not agree with more frequent injections despite neurological pain and symptoms.
I discovered PAS and was convinced by the excellent information so I bought vials of B12 from Germany and all the other stuff from Medisave. I have injected every other day since February 2020. The depression and anxiety where gone within 6 weeks and haven't returned - short term memory returned within a few months and long term memory continues to recover.
The problems we have are not because the NHS is bad but because of 12 years of gross underfunding. Also much more research needs to be done into how B12 works and as a retired human biology research scientist I can say its extremely complex and we have only scraped the surface. B12 is a massive molecule - think of it as a large multi tool - able to repair complex structures like the insulating sheath around nerves and much more.
Your problems are very like those I experienced and sounds like an intensive B12 programme will help a lot. Thinking of you.
Thanks for your reply. I'm honestly not sure what to do at this point. My whole family and the doctors I go to all think I'm just crazy and making it up. It feels terrifying to know that my body is basically shutting down and that I could very well die from this. I want to do an MMA test so I can use it as evidence that my B12 is low and therefore get the care I need but I recently supplemented with B12 and I read that recent supplementation can show up on your results as normal for up to three months. I feel afraid that I won't make it that long. My health is going down fast.
It is a slightly loose guideline that has been adopted in many countries around the world based on World Heath Organisation recommendations of a minimum of 400g of fruit and vegetables per day following extensive studies that have proven this to reduce mortality. Additional studies have also proved that increasing this to 7 and even 10 portions, so providing up to 800g, increases the benefits and further lowers mortality, but this is considered to be too high a target for most people and therefore the lower figure of "5-a-day", or the equivalent in different languages, was decided to be the most attainable, and therefore best recommendation, to encourage people for the greatest pro rata amount of benefit.
It is based very much on scientific fact and the findings have frequently been repeated in numerous studies.
Sorry the NHS has been severely underfunded since 2010 - thats accepted by everyone. There is no evidence of widespread fraud or theft either. This is an objective source.kingsfund.org.uk/projects/p...
Afraid of bad reaction to B12 shot
I believe my brother is dying from PA
Nausea and vomiting stopped by one B12 injection an indication of undiagnosed PA?
Anyone heard of the FUT2 Gene and the link to poor B12 absorption?
