B12 deficiency recovery time - Pernicious Anaemi...

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B12 deficiency recovery time

Nathan12345 profile image
96 Replies

Does anyone know roughly how long it takes to get better from low b12, I've read elsewhere it can take anywhere from 4 months onwards as your body needs to make new blood cells that incorporate b12 into them? Currently i take a centrums for men daily and 100mcg of cyanocobalamin a day also

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Nathan12345
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Booksellercate profile image
Booksellercate

Nathan12345 I'm on the same journey as you...I've heard it can take some time and that everybody will have their own unique experience. Much depends on, for example, how deficient you are, what symptoms you have (neurological symptoms can take a while to correct). Have you been diagnosed with B12 deficiency?

I take 1 x mg hydroxocobalamin (self injected), 1 X 5000mcg methylcobalamin and another 1 x mg lozenge. B12 deficiency generally requires quite high doses to repair and reverse. There is lots of info on this site by many who been there and made a full recovery :)

I've had 10 injections and have days of despair and impatience..but people keep reminding me that it will take time and I must be patient. A number of people have also stressed the importance of of supporting increased B12 with lots of folic acid/folate (I've just found out I've not been taking nearly enough of this which is needed by B12. Not enough folic acid/folate can impede the effectiveness of the inejctions) - and other co-factors such as potassium and iron.

Good luck!

Nathan12345 profile image
Nathan12345 in reply to Booksellercate

Booksellercate yeah i got diagnosed as b12 deficient just under 2 months ago (level was at 179) been on tablets since, i had my b12 redone on the wednesday just gone and have a doctors appointment on thursday so will ask what me levels are (i want to get over 1000 ideally) so i can check progress, i do have neurological aswell as mental symptoms and i think because of the mental symptoms i fear I'll be like this forever (especially on bad days) and also the blurred vision, I've always had 20/20 vision and when this all started last year my visions been playing up especially during the night,

Have you been diagnosed also and if you have how long ago was it?

Booksellercate profile image
Booksellercate in reply to Nathan12345

Were you not offered injections as treatment?

Neurological symptoms often require injections and high doses of B12 to repair - 100mcg is probably not nearly enough to repair a deficiency with neurological symptoms.

I was going back and forth to the doctor's March-April of this year with a range of symptoms - weak, sore legs, faintness/dizziness, stomach problems. My B12 level was 243 and I had macrocytosis and nucleated red blood cells so I suspected a B12 deficiency early on. A GP eventually listened to me but didn't follow the treatment protocol correctly (sadly common) and gave me one injection then refused to treat me anymore because I was within range. B12 is treated by symptoms, not by range. I had to take treatment into my own hands.

Nathan12345 profile image
Nathan12345 in reply to Booksellercate

I wasn't offered injections, i told the doctor every symptom i had which at the time was blurred vision, psychosis, tinnitus, sore calf muscles, carpal tunnel sensation in my right arm (which i believe has now led to pins and needles in my little finger), brain fog, poor memory recollection, fatigue, dizziness, lethargy and confusion, it took a year to get a b12 blood test as the doctor before this one diagnosed it as depression (i didn't know until after that these were symptoms of b12 deficiency so i didn't think to ask prior) i don't eat meat, fish or eggs and the doctors know this so i suspect my deficiency is due to diet but she just gave me 50mcg of cyanocobalamin and told me to take 2 a day

Twench profile image
Twench in reply to Nathan12345

Strictly speaking it's only vegans are truly at risk of dietary B12 deficiency. Dairy products contain lower levels of B12 but the bio-availability is higher, so regular lacto-vegetarians are at no greater risk that the rest of the population especially when you consider how many folk have a suboptimal diet whether they eat meat or not.

Given the risks associated with B12 deficiency and the difficulties in accurately diagnosing classical PA (or rather Autoimmune Metaplastic Gastric Atrophy), patient safety would be better served by never assuming the shortfall is dietary. It's perfectly possible for someone to have a suboptimal diet and AMGA.

Nathan12345 profile image
Nathan12345 in reply to Twench

I've read this also however I never drunk milk or eat yoghurts, the only dairy i had was the melted cheese on foods so that's why i thought it was due to that, I'm feeling i get bloated after eating now, does this mean anything?

Twench profile image
Twench in reply to Nathan12345

Have you tried taking something acidic (lime juice, tomato juice, apple cider vinegar) with food? I went vegetarian in my twenties when I realised that the chronic stomach ache I had been suffering only came on when I ate meat. I reasoned at the time that it was low acid (basic biology, you need pepsin to digest animal protein and it needs an acidic environment). Thought no more of it until a few years ago when I developed the stomach ache again. By this time a family tendency to auto-immune disease, including PA, had become apparent and my own health was deteriorating rapidly. Acid production is known to decline with age so I think the problem had just gone up a gear. I now take Betaine HCl with food and thankfully my digestion behaves most of the time.

Nathan12345 profile image
Nathan12345 in reply to Twench

Would lime cordial work the same? I used to drink that all the time and have no issues whatsoever with bloating

Twench profile image
Twench in reply to Nathan12345

Try it. I used to find wine helped but you can't really have it with breakfast.

Nathan12345 profile image
Nathan12345 in reply to Twench

Well without being judged you can haha, thanks for the advice

Withattitude profile image
Withattitude in reply to Nathan12345

Lime cordial has an awful lot of sugar in it, which can cause probs all on it's own. I suggest you try neat lime juice or apple cider vinegar with mother. Much more helpful to your tum :)

Nathan12345 profile image
Nathan12345 in reply to Withattitude

Sorry if i sound a bit stupid here but would neat lime juice be the juice from a squeezed lime?

Withattitude profile image
Withattitude in reply to Nathan12345

Yes :) Nothing stupid in checking.

sicknelliebly profile image
sicknelliebly in reply to Twench

I beg to differ. People with autoimmune disease, particularly thyroid disease, are more at risk for absorption problems which involved the intrinsic factor leading to pernicious anemia. If absorption is faulty, it doesn't matter how much meat one eats. Also people with Celiac disease, people who've taken proton pump inhibitors, those who have had stomach problems along with stomach surgeries.

weezie1020 profile image
weezie1020 in reply to sicknelliebly

I am not nor have I ever been vegan. I am taking b12 injections however, due to malabsorption. SIBO to be exact. I am also hypothryroid, vit D and potassium deficient. Vegans are not the only ones that need to worry about vitamin deficiencies.

Darshak profile image
Darshak in reply to Nathan12345

This all are symptoms are also mine i took 10 injection of b12 and took 1500mcg tablet daily in moring but i suffer from this around 2 monthe can u please help me to fell batter ...??

Chelsib12 profile image
Chelsib12 in reply to Booksellercate

What did you do

Ujjwal2223 profile image
Ujjwal2223 in reply to Nathan12345

I am very curious after seeing your post.i am on the same journey as were you.i am a 22 year male my B12 level is 175 I have neurological issues and recently I started having vision problem also.i want to know how long it took you to recover or are you still facing issues.currently I am taking 1500 mcg tablets since 1 week

cuddlywuddly profile image
cuddlywuddly in reply to Ujjwal2223

Hi there ujjwal ... same journey as you..mine started nearly 3 yrs ago with sudden depression came over me so I tried going to the gym to see if it would lift my spirits and the next morning had weird fasciculations in my calves (still have them & worse when anxious) a month or so after got terrible sciatic type leg pains in thighs and prickly skin on front thighs twitching and weird leg sensations..tight muscles which I kept stretching to try ease. Pins and needles in fingers leg vibrations..couldnt face doing my normal hobbies etc my mind couldnt cope..Anxiety sky high with worry see my doctor was sent to different neurologists rheumatologists. physios. Mri Scan on spine. Ct scan on chest..x ray for feet pain Nerve conduction tests.&.blood tests all clear...then last november my b12 was tested it was low at 205 i was told looks like no anaemia.. it was probably caused by proton pumps i used to use for indigestion and surgery for gall bladder removal 4 wks before i went to the gym ( I did go a bit overboard at my 2 gym visits!) I started loading doses of hydrocolbamin last November and now have 1 injection every 2 months.. which is all they will allow me after a fight for more. (I live in Kent uk) between jabs I sometimes have jarrows 1000 b12 tablets.. my leg pain has gone unless i walk too far.. i cant excersize as it starts sciatic pain off a bit but it's so much better..depression went cognitive prob went...I still have bad anxiety as my fingers sometimes tingle on one hand..still have bit twitching as muscles prob left fatigued.. I wish it would go!.. it scares me. Still random aches and hot feeling in feet. And my skin on thighs still feel prickly at times I find freeze gel really helps.. I'm still hoping this is still the deficiency not anything else lingering..as it's been 9 months since b12 supplements started.. I don't know if this is still all normal my doctor thinks it's not b12 because it's been so long but I think and hope it Is as I've read it can take up to 2 yrs to fully recover if at all..looking back at my b12 as I asked for previous years print outs I've never had levels of much over 300 I do hope you recover very soon it's a bit of a journey ..sorry its a very long post!

Samarshiva8195 profile image
Samarshiva8195 in reply to cuddlywuddly

Hi cuddlywuddly,

Sorry to hear that but I have same problem as like yours since 2 year. One year back doc tested all possible blood test MRI scan for head and spine both, nerve conduction test, every thing was normal but finally I found b12 (201) and vitamin D(14) deficiency. doc gave me some injection shots but symptoms didn't go away. After two months I stopped to taking shots and my symptoms was being so worse. Now one month back I tested my b12(340) and D(19) and doc gave me injection for both of the deficiency. But symptoms is not getting better please help me out if you have any solution.

cuddlywuddly profile image
cuddlywuddly in reply to Samarshiva8195

Hi samashiva I too am sorry to hear of your vitamin problems my only advice i can give you myself is to keep up your b12 injections don't stop them even if you think they're not working or if your levels are high keep having them .. I've just had another nerve conduction test and it was all clear no dreaded diseases and no neuropathy..it seems some of these symptoms take a long time to go so keep it up.. to be honest since my results this week my fasciculations have really calmed down already so anxiety has so much to answer for.. it's been 3 years since the symptoms started and 10 months since b12 deficiency found and treatment began. Looking back at old blood results my b12 has been between 220 and 300 for at least 5 or more years. I have just started taking l glutamine suggested by a friend and I have started using an electric massager on achy legs and glutes I'm finding it's helping probably where my muscles were so stiff in the past years.. I self massage them too. My serum folate level is 5.71 ug/L and my serum ferritin is 56.6 ug/L so I'm not sure if I need to supplement them.. I do hope you make a good recovery and feel better soon..what exactly are your symptoms? ..

Samarshiva8195 profile image
Samarshiva8195 in reply to cuddlywuddly

hey cuddlywuddly, I hope you are doing great.

Sorry for the late reply. My symptoms are exactly as like yours but now from few days I am fealing my finger, chin, leg twicing more than previous, it is just like small tremor. I am not taking any injection since my last post and I have read your reply. I will start to take my injection as soon as possible. how is your symptoms? Please guide me.

madametobacco49 profile image
madametobacco49 in reply to Ujjwal2223

I am taking 2000 mcg a day in 2 divided doses-I think you need to take more--just my opinion. MmeT

saurgoel profile image
saurgoel in reply to Booksellercate

What was your B12 level initially? I was recently tested for a level of 130 which is really low, and have since started taking 1500mcg methylcobalamin daily, coupled with 1000mcg injections on alternative days. In how many months can I expect B12 levels to get back to normal?

Sagandeep profile image
Sagandeep in reply to saurgoel

Have you recovered now? How many months it took?

Faham profile image
Faham in reply to Booksellercate

Hi, I am glad to have found this page. Honestly thought I was alone with this thing! Anyway here’s my story. Early this year I started getting weird numbness on feet and it was bothering me so I went to the doc and did blood tests which showed that my blood level was a bit low. (This was not the first time. Some 8 years ago I had low blood levels and was put on supplements then I was good for a very long time. Also donated blood for a patient.) it’s worth noting that I was also having gut issues (acid reflux, abdominal pain and I was eating a lot of spicy food and skipping meals etc) I went to a specialist who did more tests and told me that I had neuropathy because of low vit b12 which he stated could have been caused by either diet or worms (even though I was not a healthy eater I was not a vegetarian either and for the worms I apparently had them since childhood from what my mum told me and I rarely dewormed) I was out on injections for two months and stopped for three months because my levels were good after another test. However all the symptoms were still there. The tingling and sensation, I had major anxiety and would become emotional for no reason. Then after a few weeks my gut was bothering me so I went to a specialist who did tests and I was put on medication for worms, h pylori ( he suspected a bleeding ulcer because of all the pain. Also this was not the first time I was diagnosed with H pylori) two days into the medication I was someone else. Symptoms improved, I wasn’t anxious, I slept better, less nerve pain, Bette balance and the tingling and numbness disapperead. I am going back to my vit b doctor for another test next week. Anyway my question is, does this ever get better and how long should I expect it to take!

Hipgnosis profile image
Hipgnosis in reply to Booksellercate

Is it really possible to have a full recovery?!!

deniseinmilden profile image
deniseinmilden

If everything is perfect for repair, nerves can noticeably improve for about 18 months, with the greatest benefits seen in the first 6 months. However anything that slows this will mean that repair can go on for longer so it is important to keep positive and work hard to keep the improvement going.

Nathan12345 profile image
Nathan12345 in reply to deniseinmilden

Thank you, 6-18 months isn't too bad considering it's taken years to deplete

Catsgalour profile image
Catsgalour in reply to Nathan12345

How long for you? I remember balance going in my 20's and awful time after having my second daughter at 28. Tinnitus and Depression plus Panic Attacks when out! Shocked now as more than half my life has been wasted on non treatment ..! Other things to like Leg's and Muscles aching ... So awful as never an explanation and made to feel it was just me or Women Problem's ? Thank God for the internet and sites like these with lovely self sufferers to help and guide us!

I am 65 now and have not long started SI ...(Well Husband does it Thank God) And so hoping like you for something ASAP ? So hope the Newbies on this site don't waste time with Doctor's who don't Understand or Care a lot! Take control and let me know how you get on...! Good Luck to us Both ! x

Catsgalour profile image
Catsgalour in reply to deniseinmilden

Blimey ... Hope my Nerves hurry up then as I am 66 next month! So upset to know there has always been a cure when I have suffered for more than half of my life! Good Luck to the Newbies who have the benefit of sites like this and the Internet so we can share knowledge and not suffer as much as my generation did! xx

Nathan12345 profile image
Nathan12345 in reply to Catsgalour

All I've heard is that injections help with neurological problems but I'm not sure about the mental symptoms (depression, anxiety etc), because i also have autism my memory has never exactly been spot on but it's never been this bad hopefully that changes with alternative treatment, Catsgalour have you been diagnosed with pa or b12 deficiency?

Catsgalour profile image
Catsgalour in reply to Nathan12345

Oh yes ...Get my 3 monthly Jabs and also have Thyroid probs! Got to shut down for tonight but be in touch soon! xx

Nathan12345 profile image
Nathan12345 in reply to Catsgalour

I know nothing about the thyroid but there is the thyroid society on here you can follow, they can offer help and advice have you noticed a change since starting injections?

Catsgalour profile image
Catsgalour in reply to Nathan12345

Hi Again, Yes do know about the thyroid site but think that is under control. It was the PA which I never understood ...or realised that it was causing so many problems. Had about 12 injections now and do feel a lot better ...even my face is looking brighter? There is no way I would go back to feeling so dreadful again so SI is going to be a way of life from now on!

Nathan12345 profile image
Nathan12345 in reply to Catsgalour

It's funny how a simple vitamin deficiency can cause so many problems, I've had this for a year so i can only imagine the trouble you've had to endure for so many years but it's great it's now being addressed and working for you!

deniseinmilden profile image
deniseinmilden in reply to Nathan12345

For me, getting - and metabolising - B12 makes ALL the difference!

I know I am short of cofactors and potassium in particular if I am starting to feel "low" or "fuzzy headed".

Low B12 makes me feel horribly, uncharacteristically unstable and, because with me everything happens so quickly, I can see the improvement so clearly once I take whatever I am short of, I know that is the problem.

My memory had got so bad I couldn't function properly and it was like having Altzeimer's. It's wierd how it has come back - in "patches" so I find it hard to know what happened when in the past - some things are more vivid than others!

Thankfully my overall cognitive function continues to improve, despite the odd setback when I don't get all my cofactors right.

saurgoel profile image
saurgoel in reply to deniseinmilden

What was your B12 level initially? I was recently tested for a level of 130 which is really low, and have since started taking 1500mcg methylcobalamin daily, coupled with 1000mcg injections on alternative days. In how many months can I expect B12 levels to get back to normal or like how much time did it take for yours to get to normal levels?

Rajatyadav profile image
Rajatyadav in reply to saurgoel

Five months ago My b 12 score was 88. My new tests show that it has improved and now it is 700. But the symptoms are still there. However the doctor has asked me to stop taking b12 capsules. How was your recovery

Rshpreet profile image
Rshpreet in reply to Rajatyadav

My situation is exactly the same. Even im not feeling any improvement. I’ve breathing difficulties as well, don’t know if it’s because of b12 deficiency or something else.

Rajatyadav profile image
Rajatyadav in reply to Rshpreet

What is your b 12 level and how long have you been on treatment

Rshpreet profile image
Rshpreet in reply to Rajatyadav

My level was 130 two months ago. Then i started taking 2000mcg oral supplements, cereals, chicken liver, etc and they worked in the beginning. But now i don’t feel any better since last two weeks. I feel dizzy, faint, breathless, anxiety, all symptoms again.

Rajatyadav profile image
Rajatyadav in reply to Rshpreet

The symptoms will hopefully improve over time. Mine have reduced over the period of last 5 months. But my doctor has asked me to stop taking 1500 mcg methylcobalamin tabs. I feel a little wobbly when I walk.

Rshpreet profile image
Rshpreet in reply to Rajatyadav

what is your serum b12 levels now?Mine says high but I still feel worse.

Rajatyadav profile image
Rajatyadav in reply to Rshpreet

It is 744 after 5 months of taking 1500 mcg tablet daily.

Rajatyadav profile image
Rajatyadav in reply to Rajatyadav

What is your age as it matters to some extent for the duration of treatment and visible improvement.

Rshpreet profile image
Rshpreet in reply to Rajatyadav

Im 26, not working since two weeks, doing rest.i received 1000mcg hydroxocobalamin injection last week and it helped my breathing for two days but my breathlessness came back gradually again. My current b12 levels are 671. i dont know when will i feel my full breath.

Rajatyadav profile image
Rajatyadav in reply to Rshpreet

Did they find out the reason behind your B 12 deficiency?

Rshpreet profile image
Rshpreet in reply to Rajatyadav

No.how do they find out usually? tests?

By the way, oral supplements worked for me in the beginning. but i stopped taking them when my breathlessness got worse and my serum b12 was 671.

Marley1594 profile image
Marley1594 in reply to Rshpreet

Hi rshpreet, I know you have posted this a long time ago but I have just come across your comments and can confirm I am also suffering with shortness of breath as well. I feel it has got worse since my injections but I have been told it can get worse before it gets better? How are you feeling 2 years in?

clivealive profile image
clivealiveForum Support

Nathan12345 Reading through your previous posts I see that you are vegetarian and as such it is likely that you are going to need to supplement with B12 for the rest of your life.

I am not medically qualified so I can only suggest you hammer this out with your doctor or perhaps a dietitian to get you on B12 rich foods that you can eat.

Keep us posted with your latest B12 test results - I've a feeling they may still be on the low side.

Nathan12345 profile image
Nathan12345 in reply to clivealive

I don't mind supplementing for the rest of my life, I'd rather i did so when i am feeling a lot better i don't go back to feeling like i am now, I am going to hammer the doctor with loads of questions and ask what the best route to take would be regarding my diet

Regarding the blood test results, I'll post on here what it is, if it is still low from 6 weeks treatment then surely that will indicate an absorption problem right?

fbirder profile image
fbirder

If you have pernicious anaemia then you could be taking those tablets forever and not see any improvement - because virtually all of that B12 will pass straight through.

If you B12 isn't in the high hundreds when you see the doc on Thursday then I'd insist on being started on a course of injections assuming it is PA. Your doc may tell you it isn't because you don't have large blood cells. That's wrong.

Check this out - frankhollis.com/temp/Summar...

Nathan12345 profile image
Nathan12345 in reply to fbirder

I haven't been tested for pernicious anemia but i feel if my results are low after 6 weeks then the doctor might do another bloods to test for it, i guess because they know i don't eat meat, fish etc they've put it down to that (which is why they haven't checked for pa)

I didn't think we fully recivered. Or is that P.A?

I have been taking suppliments for 6 months & I have had a significant reduction in my symptoms. Or could that be, my lifestyle has changed, retirement?

Nathan12345 profile image
Nathan12345 in reply to

I assumed if you got your levels nice and high it will alleviate the symptoms and then maintaining the high level the symptoms would eventually dissapear

ljmulledy profile image
ljmulledy

It took me well over a year to feel well physically. Because my PA went undiagnosed for a long time, almost 2years, I have permanent personality changes. I feel like i'm still healing psychologically and it's been three years. I inject weekly. All in all, I feel I am a better version if myself.

Nathan12345 profile image
Nathan12345 in reply to ljmulledy

Did you have trouble with outbursts of anger? I feel like I'm never going to be calm or have that relaxed feeling again, it's great you're feeling better though

ljmulledy profile image
ljmulledy in reply to Nathan12345

Yes, i am short fused. I meditate daily. It helps

in reply to Nathan12345

I did and felt. Vunerable.

Nathan12345 profile image
Nathan12345 in reply to

Sorry to hear that vala, at the moment ljmulledy i don't think i have the payience for meditation lol, i was such a laid back person nothing would stress me out or get on top of me but now i seem to get stressed over little things and i miss being calm, maybe if i get injections it'll help with it as i think it's mainly the symptoms that make me feel like this and if they improve then so will my emotions

ljmulledy profile image
ljmulledy in reply to Nathan12345

Some days are better than others. Though my essence is the same, i am a different person....i like myself better. It takes time but it wil get better. Have faith.

Nathan12345 profile image
Nathan12345 in reply to ljmulledy

Thank you

in reply to Nathan12345

Maybe it will. Goid luck.

Nathan12345 profile image
Nathan12345 in reply to

Goodluck to you too vala

clivealive profile image
clivealiveForum Support

It's good to swap experiences like this Nathan12345 , Hidden , ljmulledy as having been diagnosed with P.A. back in 1972 for nearly 40 years I felt "so alone" as I didn't know anybody else who had it. I simply turned up every four weeks at the surgery for the nurse to give me my jab and that was it. Neither doctors or nurses throughout all that time ever asked me how I was coping or feeling.

When symptoms started to return before the four weeks were up I complained to my then GP and he simply laughed at me saying it couldn't be the P.A. because I was getting the B12 injections and he wasn't going to vary the frequency from what it said in his little book.

Six years ago I joined the PAS and "discovered" there were hundreds (if not thousands) like me and suddenly I was not "so alone".

I had what was probably my 660th injection of cytamen (cyanocobalamin) since 1972 this morning and as I'm still "clivealive" I guess it must still be working :)

Nathan12345 profile image
Nathan12345 in reply to clivealive

I haven't been tested for pa yet but i will be mentioning it to the doctor on thursday if my levels are still low, when i first got these symptoms i felt alone as i didn't know what was going on and in a way it's a good thing there's people out there that feel the same (in the sense that we're not alone and there's others to share their experiences) I'm just waiting until it gets better really, to have something to hold on to

Catsgalour profile image
Catsgalour in reply to clivealive

OMG ... Think we must have got this dreadful thing at a similar time? Wish I had found this site before ...!! New to it really but starting SI a few weeks ago. Can't believe how many people have suffered the same symptoms ... But finally an explanation for it all ...Relief both Physically (I hope ) and certainly mentally! I am turning off my PC for tonight but hope to contact you again! x

clivealive profile image
clivealiveForum Support in reply to Catsgalour

Catsgalour let us have a few more details when you feel up to it. I'm not a medically qualified person but there are many on here who can give good advice.

Have a purrfectly good night

matty220 profile image
matty220

Sorry this might have already been said as I haven't read all the replies - I had a B12 level of 284 (190-900) and my doc gave me 50mg of cyanocobalamin.

I took this for a month while researching on here what others said. During that time I felt no different.

I bought some 5000mg methylcobalamin (one bottle of Jarrow and one of Solgar, just to see if there was a difference) and started taking them sublingually one per day plus a Thorne B complex I'd got at the same time.

I would say I began to feel a little better after about a month and now, after 3 or 4 months I feel sooo much better! My last blood test showed my B12 to be 1600 which I'm very happy with. My doc didn't even call me in after that test, I just got a print out from reception so it must be ok. I shall continue with 1000mg tablets when these have finished.

I'm now self medicating with NDT but I always feel it's important to only change one thing at a time so the B12 came first.

Good luck :)

Nathan12345 profile image
Nathan12345 in reply to matty220

Hey matty220 I've seen in replies that quite a few people take the methylcobalamin form and have noticed improvements so i think i might do the same, where do you get yours from?

Booksellercate profile image
Booksellercate in reply to Nathan12345

Sorry to jump in but just seen this. I get mine from Amazon- but there are plenty of other online suppliers :)

Nathan12345 profile image
Nathan12345 in reply to Booksellercate

Thank you, just ordered the 5000mcg ones from jarrow

Booksellercate profile image
Booksellercate in reply to Nathan12345

Excellent! Make sure you get lots of potassium too now - sweet potato, bananas, yoghurt just to name 3 of many :)

matty220 profile image
matty220 in reply to Nathan12345

As the others have said - Amazon. make sure you take a good B complex with it. Thorne comes highly recommended on here.

Nathan12345 profile image
Nathan12345 in reply to matty220

matty220 I'll be getting methylcobalamin based tablets because i feel the cyanocobalamin ones aren't doing anything, would it be safe to take a 5000mcg tablet aswell as a b complex? Or would that be too much (i know you cant overdose on b12)

matty220 profile image
matty220 in reply to Nathan12345

According to info on here it's important to take a B complex with the B12. I've nearly done 4 months now on the 5000mg with the Thorne B complex and am starting to feel normal again :)

I'll go to the 1000mg when I reorder from Amazon. I'll keep up the B complex as well. I believe the other B vitamins help with the absorption of the B12.

Nathan12345 profile image
Nathan12345 in reply to matty220

That's great news, I'll definately look into that, thanks

in reply to Nathan12345

Just looking through this site I realise that it seems that nobody has yet discovered

vitamin B12 patches! Vitamin B12 is very difficult to digest, gives your liver a lot o work to do too. The vitamin patches (plasters) let the vitamin B12 go straight into your blood stream, so are 100% effective. I use Patch MD, as with these you can use one a day (1000 mcg plus all the other B"s). Malabsorption with the supplements can be due to the 'intrinsic factor', which is not going to occur with the patches - it goes straight in! There are lots of different patches available on Amazon or EBay (not allowed in the UK yet) but they can be one patch which lasts for 5 days, which is much slower. You can't sleep with them on as they keep you awake, therefore I use the Path MD which lasts for 8 hours, one a day. I had a terribly low level and I suffered from burning mouth syndrome which is just beginning to heal. Tingling in my feet and banging in the head is 95% gone at the moment.

It's only taken about 2 months.

Mar-y profile image
Mar-y

Even if your deficiency is dietary I think they recommend getting injections initially to boost levels right up. Check the BCSH guidelines.

Nathan12345 profile image
Nathan12345 in reply to Mar-y

Mar-y why the doctor didn't give me injections when my levels we're at 179 beats me so i doubt they'll give me them now when its over 500 :(, i suffer from peripheral nerve damage and the doctors don't even think it's related to the b12 bearing in mind i had no problems until i had a defecieny, they're uneducated and it's a joke for people like us, I'm going to self treat myself from now on, i have 5000mcg methylcobalamin lozenges i got from amazon, I'm going to try these and see how i get on hopefully it will repair the nerves

I don't know how helpful this will be, but I've been reading up on remyelination in the CNS and Vitamin D3 is found helpful in boosting myelin sheath regeneration. There is also research showing Vitamin D & E possibly working together in the same process. I don't have PA, but I have been found B12 w/o anemia several times and also multiple times macrocytosis and was never treated and everything I went through and am going through now could have possibly been avoided. My first symptoms were dysarthia and dysphagia. This progressed (coming and going) to 50% normal and plateaued. I seem to get all of the rare symptoms for some reason. A few years later I developed psychosis, persecutory delusions, hallucinations. That started out of nowhere, progressed to the point where I ODed and ended up in a psych ward. Within a week they loaded me up on anti-psychotics and sent me on my way. While I was there they found macrocytosis again and did not treat once again because I did not present w/ anemia. Fast forward to last year, it started with foot drop and has progressed to now with very rigid walking. Mainly in left leg. I didn't/don't have any of the usual symptoms of B12 deficiency you see listed on websites other than fatigue.

First let me say, my doctor does not treat this as serious because I don't have anemia, despite neurological symptoms that cannot be explained by him or 4 other neurologists. I asked for homocysteine and MMA tests on my last visit and he said we'll do those when you come back in a month. WTH, right? So a couple of weeks ago, I started out on the 500mcg cyanocobalamin (4x day) for two weeks and all I got were mild muscle cramps. I then ordered Jarrow Methyl B12 500 mcg which I started a few days ago. I took 1 500mcg cyanocobalamin in the morning that morning and DW came home with the methylcobalamin and I finished the day out with those (3x). Approx. 1 hour after I took the 3rd dose of methylcobalamin that night, the skin on my whole body started tingling. A few hours later I went on to bed. I woke the next morning to muscle cramps all over my body. I figured it was potassium and took one of DW's 20MeQ potassium chloride which is approx. 1500mg. DV potassium is 4700mg day. A few more pills later that day I got the same tingling after taking the lozenges and now it hasn't happened since. I also came across a clinical book online that explains what's happening with the B12 Deficiency/Potassium connection. It apparently has to do with rapid DNA synthesis and rapid cell division in bone marrow and as a result requiring much cellular potassium in the process. I'd guess a 'Robbing Peter to pay Paul' type of situation. It (hypokalemia) can be fatal if you're not careful. I don't know if muscle cramps are one of the first signs or not, but I'd start with supplementing if you're winging this without a doctor monitoring your levels. A large banana is only approx. 487mg of potassium BTW.

Here are the links on the myelin regeneration. There is a doctor down in Brazil? that is treating MS patients successfully using megadoses of Vitamin D. Not curing, successfully treating. Giving them a better quality of life. I would not recommend going over 10,000 IU/day D3 without a doctor monitoring your levels, but it may be something you want to discuss with him/her. I believe it is Vitamin K, K2 (?) you would also want to take to make sure you don't have calcium deposited in tissue. You may also want to increase your lipid intake, protein and essential fatty acids to make sure the B12 has something to work with when oligodendrocytes are being formed and remyelinating the axons - for those of you that have progressed that far. That's about all I have right now. Best of luck to everyone!

sciencedaily.com/releases/2...

ncbi.nlm.nih.gov/pubmed/197...

youtube.com/watch?v=erAgu1X...

P.S. - Sorry for the book. :)

gg317 profile image
gg317 in reply to

it says right on my lab report that you can get psychosis at under level 500, some refer to that as neurological.

Almost forgot! One of the most important links of all IMO. This is the B12 Research Institute in Rotterdam. They SPECIALIZE in B12 and folate deficiency. You might want to take some time to browse their site and study what they have to say. They have the most complete symptoms list of B12 deficiency I have been able to find on the net and that includes U.S. medical research websites. I'll post the links with google translator so you don't have to go through the trouble. ;)

About: translate.googleusercontent...

B12 Symptoms: translate.googleusercontent...

sicknelliebly profile image
sicknelliebly in reply to

thank you so much for writing and sharing all of this!

Marybrown06 profile image
Marybrown06

Hey,

Thanks a lot @funnyhaha, your documents are very interesting! I'm glad I found your post because I recently opened a subject about cofactors but did not have much success :)

@Nathan12345, how are you doing now? How long did it take to get improvement?

saurgoel profile image
saurgoel

What was your B12 levels when you started taking medication?

saurgoel profile image
saurgoel

That's great! Myself going through the same phase :( Having a level of 130.

Riseup01 profile image
Riseup01

Hello Nathan, I know I am replying to the old post. How are you feeling now and how many months it took for you for complete recovery.

ireenajones profile image
ireenajones

Even I have suffered with these symptoms earlier, that time i didn't know that i am B12 deficient, after multiple doctor's round and test finally got to know that I am suffering from B12 deficiency. The main problem to deal with it, is to have injections and being a vegan i couldn't afford it. So, i relied on natural foods to overcome it, which was obviously not an option. So, i took the help of internet to find some vegan alternatives for b12, that's when i got to know about some b12 oral shots. At first, i was skeptic whether to order them or not. Anyway, i ordered them and start taking daily with the apple cider vinegar. Believe it or not, it actually works, i did even lose some weight, which i obviously not expected. These are super uick and can be taken anywhere. So, for me these oral shots are surely worth it. Here 's the link buymicb12.com/products/buy-... where i usually place my order. I don't know they have some other methods for placing the order, but this method is also convenient for me.

I was FINALLY diagnosed in October... Truthfully B12 wasn't even on my radar! However finally we got a really good doctor for the first time in a long time in my town, I told him my symptoms and he sent me for bloodwork. when I saw him the following week I had a score of about 200 and he informed me my B12 is low and gave me 3 injections over the course of 3 days and has me going back monthly for my shot and I'm to take 2,000mcg/ day sublingually. Looking back it's foolish that I never even thought it could be a B12 deficiency considering all signs pointed to it. I have horrible tinnitus in both ears, confusion, dizziness, none existent short term memory, a hard time concentrating, no energy (it literally feels like each one of my limbs is exhausted like I just climbed a mountain or something... all of the time!) And some serious depression, I was diagnosed with major depressive disorder with TRD (treatment-resistant depression) right about the same time. It's now been 6 months I've been getting the injections and such and the last few weeks I've felt a bit better and again didn't even cross my mind that I could be starting to feel the difference with the B12 (as it takes 6-12/mo... cuz Ya know we haven't already suffered enough!) Well I def know that is y... Due to the coronavirus, I am late getting my shot and I am feeling every bit of it! I truly wouldn't wish ne of this on my worst enemy!!! Being that it has caused such severe depression, memory loss, and personality changes it has destroyed my life and almost destroyed my marriage! So all of you who r reading this, whether it's yourself or a loved one suffering I truly am sorry you have to deal with any aspect of this!! Be patient with those u love who suffering it's not their fault and they don't want to be this way I PROMISE!!

Tracey1234567 profile image
Tracey1234567

Hi I no what u was going throu it happened to me , my level now is 500 and they say that is a good level. Now , but mine went down to 350 and they still said it was ok even thou I did feel not well . Now they are saying 500 is good

Nathan12345 profile image
Nathan12345

for those that are still active and have asked, regarding my b12 i feel a lot better i took the methylcobalamin as i read it was more superior than the others. I felt that much better that within time i forgot about this site in all honesty.

Rajatyadav profile image
Rajatyadav in reply to Nathan12345

Nathan please share your treatment course. And are you taking any medication for b12 now.

30143014 profile image
30143014

How long did it take you to recover Nathan I'm going through this now and it is hell.please reply thanks

Tracey1234567 profile image
Tracey1234567

My b12 is 300 they say that good and it's not a problem

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