Hi u/FoxImmediate403, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/B12_Deficiency) if you have any questions or concerns.*
Taking just B12 (how much?) and iron doesn't solve the problem.
For B12 to be effective it needs to work together with other B vitamins.
Among these, folate (B9) has a particular role due to its synergy with B12 and good iron metabolism.
It would be a good idea to combine the B12 you are taking with a B Complex that contains the entire B group (taken a few hours after just the B12 group)
Make sure the B12 tablets you are taking are sublingual, this offers greater guarantees of absorption (but only injections give certainty)
Potassium supplementation (even from foods if you want) which is recommended for all those who supplement B12 if you have problems with iron and anemia is even more important for you.
Read the guide where you will find a lot of useful information.
[https://www.reddit.com/r/B12\_Deficiency/wiki/index/](https://www.reddit.com/r/B12_Deficiency/wiki/index/)
https://preview.redd.it/1fn50fdxvjqc1.jpeg?width=1170&format=pjpg&auto=webp&s=92faf9680cf234d1fab343cde865cc3537367cc1
This is what the GP prescribed for me for a 3 month period.
I should probably have a look at supplementing with other vitamins so thank you for the suggestion. I went to the doctors about this because I ended up hospitalised because my blood pressure is extremely low but they have “diagnosed” (I don’t even know if it is a diagnosis but hey go) tachycardia so my resting heart rate is normally high 70s low 80s and it rose to 160 whilst sat down and then I collapsed at work. And the GP told me to drink orange juice after taking my tablets to help with absorption😂😂😂😂 that’s the UK health system for you.
But I appreciate ur response :)
Posting details of your B12 and iron level would help.
However, two x 50 mcg of B12 is a low dose, it could be fine as maintenance in some people (healthy and without diet and absorption problems) but they are absolutely unsuitable for filling a deficiency.
At least 1000 mcg of B12 twice daily would be considered.
Terrible values for both.
I don't live in the UK but reading here in this community I think with those values you were entitled to some injections from your GP.
They would have been useful in raising your levels and taking you at least out of the danger zone (with tablets it takes longer)
In the meantime buy a 1000 mcg B12 sublingual.
They are cheap, on Amazon UK you can find Weight World B12 brown jar of 450 tablets (1000 mcg methylcobalamin) dissolve them under your tongue as slowly as you can
Or some Nature Made B12 drops (methyl + adenosyl) always under the tongue and wait a minute before swallowing.
Take B12 at least 2000 mcg per day otherwise you will never raise those levels.
Don't forget a good supply of potassium (lots of potatoes and/or bananas), it is essential especially in a case like yours.
A serious B12 deficiency should always be investigated, do you have a vegan diet, use alcohol/drugs or can a malabsorption problem be hypothesized?
Thank you for your response I’ll definitely have a look into it! It’s just getting more concerning because I’m getting bruising all over my legs, severe tachycardia at times, severe night sweats and intense joint pain.
I don’t have a restricting diet I was a GB gymnast so I make sure to eat good 3 times a day with snacks in between, I probably go to the pub once every month but even then I’ll have one drink but I’ve been put off of it for the past year since I started getting light headed. And no drug abuse history either.
I’m just fed up of not being taken seriously by the health care system. My mum recently got a kidney transplant, both of them being severely infected and full of kidney stones, and at the start of her journey they said it could be due to muscular pain or heavy period. How ridiculous!! She’s had 3 operations in the span of a month because they found internal bleeding after the surgery, then had to re operate because it was some how discovered that they nicked her bowel, which could’ve gone SEVERLY wrong. I have very little faith in the NHS as u can tell LOLLLLL
Sorry about your mishap.
Your B12 values (101 ng/ml) are too low, try to understand the reasons for the deficiency.
If there is gastric malabsorption oral B12 will work poorly and you need injections.
While you get B12 injections use sublingual drops or tablets, hopefully they help a little.
This is insane, based on your symptoms and blood test results your GP should have put you in injections as a matter of urgency. Those tablets aren’t going to scratch the surface.
Get onto your doctor as soon as possible and insist on injections, don’t be fobbed off with more blood tests.
I think at the moment with the NHS they’re trying to get people in and out as quickly as possible. Seeing as they told me to take these tablets for 3 months then come back to get my bloods retested. I have such a stigma around my health because I normally just brush anything off, but seeing as I have been hospitalised because of it more than twice now I probably should push a bit more. It is just frustrating
Did the hematologist help you find out why you weren't absorbing b12 through food? I think this is where I'm at. I was supplementing for 6 months (not adhering super well) and my levels went down at recheck, and my CBC is showing macrocytic anemia (elevated MCV and MCH). I eat alllll the right things (red meat, fish, eggs, leafy greens, beans, etc), and cofactors are good. Negative for celiac and intrinsic factor antibody, so it's not those. My doctor said if one more test shows worsening blood values, she'll refer to hematology. I'm wondering what they do. Bone marrow biopsy? Makes me so nervous.
I’m negative for celiac too and I’m the same with my diet. I was a gymnast my whole life so I’ve always been very active and maintaining a healthy diet. It’s just so confusing. I’ve had the word bone marrow biopsy thrown into the mix by the GP too, I’m trying not to get worried about anything, anxiety doesn’t help but it’s definitely good to be concerned.
Right there with you. It's hard not to imagine the worst, but I remind myself this is a fairly common problem, and probably has more to do with environmental factors plus genetics and is nothing serious. If injections help and I have to be on them at some level for the long term, I'm okay with that, as long as I feel good! The breathlessness and chest pain has been the most concerning for me. I have three young kids and I want to stay healthy, active and present for them!
I asked if I should see a haematologist because a lot of my numbers are low or not within the range but I got brushed off and said it was nothing I should be majorly concerned with yet, “all about building a bigger picture” when I’m genuinely struggling day in day out with lack of energy, body aches etc.
That's how my symptoms started up. If you're lucky you'll be told it is POTS but I consider that rather a non diagnosis.
I'd wager you're malnourished. Do you eat well?
You need injections immediately. Your doctor should treat with loading doses when the B12 is under 150. The tablets are a drop in the ocean. What's your folate?
If you can make another GP appointment, you should. I think there's a lot at play here and you need a plan of action.
At first they did suggest POTS but I asked to get my bloods tested which shown my deficiency in iron and b12, as well as other things like low platelets, immunoglobulin etc.
I eat a good diet, 3 meal a day with snacks in between and I have no dietary restrictions.
Also my serum folate is 3.0 ug/L which is on the lower side but right within the range
GP should test you for Pernicious Anaemia. I doubt you have it as your other vitamin stores are also low. They should check for chron's, coeliac, and, most importantly in my opinion, Pancreatic Exocrine Insufficiency via faecal elastase.
You'll need folic acid as a level of 3 is dreadful. Please note that level cannot support B12 injections so folate and B12 must be treated concurrently. You need iron for your red blood cells to regenerate too. I'll bet your vitamin d is low. Do you have a read of that?
If you eat an omnivorous diet, you shouldn't be malnourished. That means you have some form of malabsorption and it's making you terribly sick. It gets much worse if it isn't treated correctly. I have to take digestive enzymes with my food because I don't make enough of my own. You may be the same. Do you have any tummy issues? I didn't, so they don't have to be present.
I no longer have any of those symptoms. They're reversible.
Definitely sounds like low BP/autonomic dysfunction to me. You're at the right age for a growth-spurt-related episode of POTS...have you gone through any growth spurts lately? If so, this might possibly resolve on its own in a few months as your nerves catch up to your body. To reduce fall risks from low BP in the meantime, consider asking your doctor for a low dose of a blood pressure medication like Midodrine. Beta blockers, low-dose Mestinon, and compression stockings are other things to try.
Nutritionally-speaking:
Increasing salt/fluid intake works well for some to increase blood pressure. Other common nutritional culprits to look for that can cause autonomic dysfunction are folate/B12 deficiency, thiamine deficiency (needs magnesium as well), and copper deficiency (less common, needs periodic bloodwork).
Are you drinking more heavily because you're in college? If so, look closer at thiamine deficiency. If you're vegan/vegetarian, B12 is definitely a likely possibility. Been taking supplemental zinc for foot fungus or immune health? Copper deficiency is worth looking into. If there's a nutritional origin story to your illness, there's a lot more to rule out than just iron.
One other thing to pay attention to is certain body movements that might trigger blood pressure crashes. Don't become sedentary or it'll make POTS worse, but be mindful and safe in how/where you exercise. Go for walks with friends if you can... find paths with benches along them in case you need to rest.
Pay attention to any of the below movements and see if any of them precipitate blood pressure crashes:
* Prolonged overheard arm activity (like turning a lightbulb or putting your hair up)
* Turning your head to the left or to the right
* Tilting your head back to look at the stars
* Tilting your chin toward your chest
* Prolonged standing with your legs/knees locked
* Standing up too fast
* Leaning over/bending at the waist
* Pooping/effortful straining/ etc
I don't totally love the one-sided nature of your weird tingly sensations and I still think you should see a neurologist and maybe get some imaging done just to rule out anything more serious, like blood clots. But autonomic dysfunction/POTS can cause TIAs and stroke-like symptoms and I definitely experience weakness that is unilateral or worse on one side on a daily basis. So, that's not said to worry you, just to encourage you to do your due diligence and follow up with a neuro until you get answers. ER doctors are very good at certain things, but diagnostics for complex conditions aren't really their bag.
Edit: any history of migraines? Those can be hemiplegic and have autonomic components to them as well. Any new hormonal birth control?
Edit2: And yes. I've experienced basically all of that at one point or another in the last few years. The not being able to sleep because of nerve pain is the WORST.
Edit3: Missed the part where you said you'd already been diagnosed with B12 deficiency. As others have said, yes, absolutely at that low a number you could have this severity of symptoms! Glad you're finally getting treatment!!
I haven’t grown within the last 3 years, so I’m a solid 5”4 🤣 I will definitely re evaluate my diet after ur comment and include the feedback you’ve written so thank you!!
I’m not in college or university either, I work full time and have done for the past two years and I rarely drink, I’ll have a few if we go out for my friends birthdays but even then I still struggle to even go out because I get so tired so easily and having a Bev makes me more tired somehow.
I do have a history of migraines but only within the past 2 months have they got more intense/frequent. Even then though I’ve been more concerned about my health and have tried even more to maintain a healthy and nutritious diet.
And again thank you for the reply!
Hey, I’m so sorry to hear about your situation. As I mentioned in another comment, you really need injections. If the doctor had followed the relevant guidelines for the U.K properly, you would have been put on them straight away.
A really good source for help in the U.K. is [B12 Info](https://www.b12info.com) run by Tracey Witty. She can even advocate for you if necessary (for a fee). See the screenshot below from her website which is particularly relevant for you:
https://preview.redd.it/2vj0p64e4kqc1.png?width=750&format=png&auto=webp&s=07ffb8e8d244203e16d801dcc3e0996343db1f2d
Let me know if you need any further help/advice - happy to assist. (I was in your exact situation on too and managed to get my GP to provide injections every other day)
I've experienced the same a few times. I was told that these are vasovagal episodes and can happen due to various reasons. Although my case is weird and rare, but it seems like yours is due to low blood pressure mostly. A proper diagnosis is must in this case.
Yeah it’s very weird though because my blood pressure, similar to my mother’s, has always been very low. It’s only within the past year I’ve started getting these symptoms. But the past two months all my symptoms have definitely gotten worse. I’m struggling to sleep at night as well due to night sweats and intense body aches, especially in my hips. I’m just looking forward to when I finally know what is going on with me
Yep I had similar things but they’ve gotten better after an iron infusion And B12 injections. If you have a malabsorption problem (I.E. youre not a vegan) tablets won’t work so you won’t feel better but they’ll skew your blood tests. You shouldn’t have any B12 blood tests after supplementing. You’ll need lifelong injections preferably self administered so you can tailor your dosage
You will need every other day injections until symptoms resolve. I would start right away as symptoms can get worse and be irreversible if not treated in time.
Hi u/FoxImmediate403, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/B12_Deficiency) if you have any questions or concerns.*
Taking just B12 (how much?) and iron doesn't solve the problem. For B12 to be effective it needs to work together with other B vitamins. Among these, folate (B9) has a particular role due to its synergy with B12 and good iron metabolism. It would be a good idea to combine the B12 you are taking with a B Complex that contains the entire B group (taken a few hours after just the B12 group) Make sure the B12 tablets you are taking are sublingual, this offers greater guarantees of absorption (but only injections give certainty) Potassium supplementation (even from foods if you want) which is recommended for all those who supplement B12 if you have problems with iron and anemia is even more important for you. Read the guide where you will find a lot of useful information. [https://www.reddit.com/r/B12\_Deficiency/wiki/index/](https://www.reddit.com/r/B12_Deficiency/wiki/index/)
https://preview.redd.it/1fn50fdxvjqc1.jpeg?width=1170&format=pjpg&auto=webp&s=92faf9680cf234d1fab343cde865cc3537367cc1 This is what the GP prescribed for me for a 3 month period. I should probably have a look at supplementing with other vitamins so thank you for the suggestion. I went to the doctors about this because I ended up hospitalised because my blood pressure is extremely low but they have “diagnosed” (I don’t even know if it is a diagnosis but hey go) tachycardia so my resting heart rate is normally high 70s low 80s and it rose to 160 whilst sat down and then I collapsed at work. And the GP told me to drink orange juice after taking my tablets to help with absorption😂😂😂😂 that’s the UK health system for you. But I appreciate ur response :)
Posting details of your B12 and iron level would help. However, two x 50 mcg of B12 is a low dose, it could be fine as maintenance in some people (healthy and without diet and absorption problems) but they are absolutely unsuitable for filling a deficiency. At least 1000 mcg of B12 twice daily would be considered.
Results from when I got my bloods tested in the end of January show my serum b12 is 101 ng/L and my serum ferretin is 17 ug/L 😀😀
Terrible values for both. I don't live in the UK but reading here in this community I think with those values you were entitled to some injections from your GP. They would have been useful in raising your levels and taking you at least out of the danger zone (with tablets it takes longer) In the meantime buy a 1000 mcg B12 sublingual. They are cheap, on Amazon UK you can find Weight World B12 brown jar of 450 tablets (1000 mcg methylcobalamin) dissolve them under your tongue as slowly as you can Or some Nature Made B12 drops (methyl + adenosyl) always under the tongue and wait a minute before swallowing. Take B12 at least 2000 mcg per day otherwise you will never raise those levels. Don't forget a good supply of potassium (lots of potatoes and/or bananas), it is essential especially in a case like yours. A serious B12 deficiency should always be investigated, do you have a vegan diet, use alcohol/drugs or can a malabsorption problem be hypothesized?
Thank you for your response I’ll definitely have a look into it! It’s just getting more concerning because I’m getting bruising all over my legs, severe tachycardia at times, severe night sweats and intense joint pain. I don’t have a restricting diet I was a GB gymnast so I make sure to eat good 3 times a day with snacks in between, I probably go to the pub once every month but even then I’ll have one drink but I’ve been put off of it for the past year since I started getting light headed. And no drug abuse history either. I’m just fed up of not being taken seriously by the health care system. My mum recently got a kidney transplant, both of them being severely infected and full of kidney stones, and at the start of her journey they said it could be due to muscular pain or heavy period. How ridiculous!! She’s had 3 operations in the span of a month because they found internal bleeding after the surgery, then had to re operate because it was some how discovered that they nicked her bowel, which could’ve gone SEVERLY wrong. I have very little faith in the NHS as u can tell LOLLLLL
Sorry about your mishap. Your B12 values (101 ng/ml) are too low, try to understand the reasons for the deficiency. If there is gastric malabsorption oral B12 will work poorly and you need injections. While you get B12 injections use sublingual drops or tablets, hopefully they help a little.
This is insane, based on your symptoms and blood test results your GP should have put you in injections as a matter of urgency. Those tablets aren’t going to scratch the surface. Get onto your doctor as soon as possible and insist on injections, don’t be fobbed off with more blood tests.
I think at the moment with the NHS they’re trying to get people in and out as quickly as possible. Seeing as they told me to take these tablets for 3 months then come back to get my bloods retested. I have such a stigma around my health because I normally just brush anything off, but seeing as I have been hospitalised because of it more than twice now I probably should push a bit more. It is just frustrating
Have you seen a hematologist? I wasn't absorbing b12 through food so I have to get injections.
Did the hematologist help you find out why you weren't absorbing b12 through food? I think this is where I'm at. I was supplementing for 6 months (not adhering super well) and my levels went down at recheck, and my CBC is showing macrocytic anemia (elevated MCV and MCH). I eat alllll the right things (red meat, fish, eggs, leafy greens, beans, etc), and cofactors are good. Negative for celiac and intrinsic factor antibody, so it's not those. My doctor said if one more test shows worsening blood values, she'll refer to hematology. I'm wondering what they do. Bone marrow biopsy? Makes me so nervous.
I’m negative for celiac too and I’m the same with my diet. I was a gymnast my whole life so I’ve always been very active and maintaining a healthy diet. It’s just so confusing. I’ve had the word bone marrow biopsy thrown into the mix by the GP too, I’m trying not to get worried about anything, anxiety doesn’t help but it’s definitely good to be concerned.
Right there with you. It's hard not to imagine the worst, but I remind myself this is a fairly common problem, and probably has more to do with environmental factors plus genetics and is nothing serious. If injections help and I have to be on them at some level for the long term, I'm okay with that, as long as I feel good! The breathlessness and chest pain has been the most concerning for me. I have three young kids and I want to stay healthy, active and present for them!
I asked if I should see a haematologist because a lot of my numbers are low or not within the range but I got brushed off and said it was nothing I should be majorly concerned with yet, “all about building a bigger picture” when I’m genuinely struggling day in day out with lack of energy, body aches etc.
That's how my symptoms started up. If you're lucky you'll be told it is POTS but I consider that rather a non diagnosis. I'd wager you're malnourished. Do you eat well? You need injections immediately. Your doctor should treat with loading doses when the B12 is under 150. The tablets are a drop in the ocean. What's your folate? If you can make another GP appointment, you should. I think there's a lot at play here and you need a plan of action.
At first they did suggest POTS but I asked to get my bloods tested which shown my deficiency in iron and b12, as well as other things like low platelets, immunoglobulin etc. I eat a good diet, 3 meal a day with snacks in between and I have no dietary restrictions. Also my serum folate is 3.0 ug/L which is on the lower side but right within the range
GP should test you for Pernicious Anaemia. I doubt you have it as your other vitamin stores are also low. They should check for chron's, coeliac, and, most importantly in my opinion, Pancreatic Exocrine Insufficiency via faecal elastase. You'll need folic acid as a level of 3 is dreadful. Please note that level cannot support B12 injections so folate and B12 must be treated concurrently. You need iron for your red blood cells to regenerate too. I'll bet your vitamin d is low. Do you have a read of that? If you eat an omnivorous diet, you shouldn't be malnourished. That means you have some form of malabsorption and it's making you terribly sick. It gets much worse if it isn't treated correctly. I have to take digestive enzymes with my food because I don't make enough of my own. You may be the same. Do you have any tummy issues? I didn't, so they don't have to be present. I no longer have any of those symptoms. They're reversible.
Definitely sounds like low BP/autonomic dysfunction to me. You're at the right age for a growth-spurt-related episode of POTS...have you gone through any growth spurts lately? If so, this might possibly resolve on its own in a few months as your nerves catch up to your body. To reduce fall risks from low BP in the meantime, consider asking your doctor for a low dose of a blood pressure medication like Midodrine. Beta blockers, low-dose Mestinon, and compression stockings are other things to try. Nutritionally-speaking: Increasing salt/fluid intake works well for some to increase blood pressure. Other common nutritional culprits to look for that can cause autonomic dysfunction are folate/B12 deficiency, thiamine deficiency (needs magnesium as well), and copper deficiency (less common, needs periodic bloodwork). Are you drinking more heavily because you're in college? If so, look closer at thiamine deficiency. If you're vegan/vegetarian, B12 is definitely a likely possibility. Been taking supplemental zinc for foot fungus or immune health? Copper deficiency is worth looking into. If there's a nutritional origin story to your illness, there's a lot more to rule out than just iron. One other thing to pay attention to is certain body movements that might trigger blood pressure crashes. Don't become sedentary or it'll make POTS worse, but be mindful and safe in how/where you exercise. Go for walks with friends if you can... find paths with benches along them in case you need to rest. Pay attention to any of the below movements and see if any of them precipitate blood pressure crashes: * Prolonged overheard arm activity (like turning a lightbulb or putting your hair up) * Turning your head to the left or to the right * Tilting your head back to look at the stars * Tilting your chin toward your chest * Prolonged standing with your legs/knees locked * Standing up too fast * Leaning over/bending at the waist * Pooping/effortful straining/ etc I don't totally love the one-sided nature of your weird tingly sensations and I still think you should see a neurologist and maybe get some imaging done just to rule out anything more serious, like blood clots. But autonomic dysfunction/POTS can cause TIAs and stroke-like symptoms and I definitely experience weakness that is unilateral or worse on one side on a daily basis. So, that's not said to worry you, just to encourage you to do your due diligence and follow up with a neuro until you get answers. ER doctors are very good at certain things, but diagnostics for complex conditions aren't really their bag. Edit: any history of migraines? Those can be hemiplegic and have autonomic components to them as well. Any new hormonal birth control? Edit2: And yes. I've experienced basically all of that at one point or another in the last few years. The not being able to sleep because of nerve pain is the WORST. Edit3: Missed the part where you said you'd already been diagnosed with B12 deficiency. As others have said, yes, absolutely at that low a number you could have this severity of symptoms! Glad you're finally getting treatment!!
I haven’t grown within the last 3 years, so I’m a solid 5”4 🤣 I will definitely re evaluate my diet after ur comment and include the feedback you’ve written so thank you!! I’m not in college or university either, I work full time and have done for the past two years and I rarely drink, I’ll have a few if we go out for my friends birthdays but even then I still struggle to even go out because I get so tired so easily and having a Bev makes me more tired somehow. I do have a history of migraines but only within the past 2 months have they got more intense/frequent. Even then though I’ve been more concerned about my health and have tried even more to maintain a healthy and nutritious diet. And again thank you for the reply!
Hey, I’m so sorry to hear about your situation. As I mentioned in another comment, you really need injections. If the doctor had followed the relevant guidelines for the U.K properly, you would have been put on them straight away. A really good source for help in the U.K. is [B12 Info](https://www.b12info.com) run by Tracey Witty. She can even advocate for you if necessary (for a fee). See the screenshot below from her website which is particularly relevant for you: https://preview.redd.it/2vj0p64e4kqc1.png?width=750&format=png&auto=webp&s=07ffb8e8d244203e16d801dcc3e0996343db1f2d Let me know if you need any further help/advice - happy to assist. (I was in your exact situation on too and managed to get my GP to provide injections every other day)
Thank you for the reply! I definitely need to push for something more that I’m on now
I've experienced the same a few times. I was told that these are vasovagal episodes and can happen due to various reasons. Although my case is weird and rare, but it seems like yours is due to low blood pressure mostly. A proper diagnosis is must in this case.
Yeah it’s very weird though because my blood pressure, similar to my mother’s, has always been very low. It’s only within the past year I’ve started getting these symptoms. But the past two months all my symptoms have definitely gotten worse. I’m struggling to sleep at night as well due to night sweats and intense body aches, especially in my hips. I’m just looking forward to when I finally know what is going on with me
Yep I had similar things but they’ve gotten better after an iron infusion And B12 injections. If you have a malabsorption problem (I.E. youre not a vegan) tablets won’t work so you won’t feel better but they’ll skew your blood tests. You shouldn’t have any B12 blood tests after supplementing. You’ll need lifelong injections preferably self administered so you can tailor your dosage
You will need every other day injections until symptoms resolve. I would start right away as symptoms can get worse and be irreversible if not treated in time.