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Just Starting My Journey with PA/Vitamin B12 Def. Insight needed.

lownskater52 profile image
37 Replies

Hey everybody,

I'm a 31 year old Male who has been battling some health issues for years and have just come across the source of these problems. I recently had a blood test done and I have low b12 (159 pg/ml), a homocysteine level at 29.1, and low hemoglobin, hematocrit, and low red blood cell count. All other values were normal (folate, iron, ferritin, CMP normal). I am currently waiting to be seen by a doctor but pretty sure this is PA.

I've been raw vegan for 4 years and have no been supplementing b12 so I'm here by my own fault. Its doubtful that this is autoimmune caused. I've had multiple issues over the past 2 years or so including left leg weakness, unable to gain weight or build muscle, some slight bloating, and low libido. None of it was enough to connect it to by b12 levels. It has escalated over the last couple of weeks and I am now experiencing some light headedness and spaciness, weakness in both of my legs with trouble walking, depression, lethargy, and overall malaise. After the blood test I self ordered, I can finally see that PA/b12 def is the cause.

I'm starting this thread because I'm scared I've done some sort of irreparable damage to my body and am looking for support. I plan on documenting my progress through this thread and hopefully this can help someone in the future. I feel a little more optimistic knowing that this was more than likely diet caused and probably not digestion caused but I'm still quite afraid as the symptoms have really stopped up.

I took a sublingual dropper today with folate, B6, and b12 that has 2500mcg of b12 and am waiting to see a doctor now. I have no idea what's coming my way or whether I can fix my issues. If anybody has any guidance for me please let me know. I will also answer any questions asked.

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clivealive profile image
clivealiveForum Support

Hi lownskater52 are you in the U.K? Protocols for treatment of P.A./B12Def differ from Country to Country.

Being Vegan without supplementing B12 will result in becoming deficient as you are but hopefully your doctor will prescribe a course of injections and then probably oral supplements which will continue periodically for life or for as long as you remain Vegan.

The B12 will start to repair the damage done to your nerve endings and hopefully all your symptoms will "disappear". This will not magically happen overnight and in some cases may take months or even years as a lot will depend on how long you were deficient before treatment.

Please be assured there is life after P.A/B12Def as I've had P.A. for 47 years and I'm still "clivealive" aged 77.

I am not a medically trained person and I wish you well.

wedgewood profile image
wedgewood

Clivealive has given you an excellent answer . Your condition is more than likely to be B12 deficiency ,caused by your vegan diet . When one reads about a vegan diet or reads a vegan recipe book , there is usually no mention of the danger of B12 deficiency which is caused . Active B12 is only found in animal products — not in seaweed or other items .There should be a warning . There is a possibility that you could have PA of course. Unfortunately the test for it - Intrinsic Factor Antibody test - is notoriously unreliable if you test negative. I think it’s unlikely , but you never know . I think your doctor will order B12 injections to start with -a loading dose of 6 over 2 weeks . Depending on how you recover , tablets may well be sufficient later . You don’t have to give up your vegan diet. Tell your doctor that you have started supplementing , as that will affect your B12 reading . . Folate (vitamin B9) is also important for you , as it acts together with B12. But I think that you will be eating plenty of that with the vegetables in your vegan diet. In tablet form it’s called folic acid .

You have youth on your side . I’m sure you will make a full recovery with the correct treatment . But don’t be impatient . Very best wishes .

Gambit62 profile image
Gambit62Administrator

if the cause of your B12 deficiency is dietary then I would suggest using a much lower dosage of B12 - the standard treatment for dietary deficiency is a course of 50mcg tablets followed by going on to regular supplements of about 10mcg a day.

The normal mechanism for absorbing B12 has a limited capacity - so large doses aren't necessary and most of them will pass straight through you anyway. High dose oral can work for people with absorption problems because small amounts of B12 are absorbed passively outside the ileum - generally about 1% of the total amount passing through the gut. For patients who don't have an absorption problem the majority that they do absorb is still going to be this 1% + the 10-20 mcg that you absorb in the ileum - so still not very much of the tablet.

Taking high dose supplements before diagnosis of an absorption problem isn't recommended as the high dose can still raise serum levels and makes diagnosis more complicated (something most GPs are unaware of)).

Taking a lower dose would resolve a dietary deficiency without this complication. It won't raise levels if you do have an absorption problem so makes diagnosis of a potential absorption problem easier.

neuerological problems caused by B12 deficiency tend to be symmetric so if you had problems on one side first then there may also be something else going on. If the real neurological problems have started in the last 2 weeks then you should have a few more months (at least) before you need to start worrying about anything being permanent - the usual time frame is 6 months and then it is only a possibility not a certainty - actually quite far from being a certainty.

I would caution against taking high doses of B6 - long term use of high dose B6 supplements can lead to neuro-toxicity. It usually reverses when supplementation stops but there have been a few instances where it hasn't reversed.

akatombo profile image
akatombo in reply toGambit62

I'm reading this too because I'm dealing with the same thing. But I thought if one has neurological symptoms then regardless of cause every-other-day injections were required until resolve?

Gambit62 profile image
Gambit62Administrator in reply toakatombo

akatombo - with neurological symptoms the priority is to treat those, so you are right.

Sleepybunny profile image
Sleepybunny

Hi.

Some b12 links that may be of interest.

Link about "What to do next" if B12 deficiency suspected.

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

In the UK, it's recommended in guidelines, that patients with b12 deficiency who have neurological symptoms (eg tingling, pins and needles, numbness, balance problems, tinnitus, memory problems, tremors, restless legs syndrome etc) should have B12 injections even if cause is diet.

More B12 info in pinned posts on this forum.

I have written longer posts on older threads which may be of interest.

I am not medically trained.

lownskater52 profile image
lownskater52

Wow. I'm blown away by the kindness and support of this forum in so little time. This is very reassuring to know there is a solid support group behind this.

- So PA is more specifically referring to anemia due to lack of b12 due to a lack of absorption from a lack of intrinsic factor. While my issue more than likely isn't IF, because b12 def from a lack of dietary intake? Guess there is a difference between the two.

- I'm going in for b12 and CBC blood tests today. No more supps until after the test. Doctors appointment first thing tomorrow. I'm in the US. I'll keep everybody posted on that.

- clivealive : thank you very much for the kind words. I dont plan to give up my vegan diet, but just add b12 supps to it like you mentioned. I'm scared but hopeful.

- wedgewood : I wish I would have been warned about this possibility too. Now I'm feeling the effects pretty intensely. It's like they came on slowly at first and now rather suddenly. Whether the doctor orders b12 shots or doesnt, I'm going to schedule some b12 shots. You can go to a local health spa and get the for $25 bucks no big deal (after this mornings blood tests of course). Going to do that a couple times a week for a couple of weeks and then go oral. Not sure is sublingual is better than just a pill. That would be great to know. My folate levels are great due to my high raw fruit and veggie (16.5 when normal is anything over 8.5). I have no other deficiencies as well (zinc, calcium, potassium, vitamin D are all in the normal ranges) which leads me to believe my digestion is ok. Praying this works though.

lownskater52 profile image
lownskater52

Gambit62 - Thank you for your post. Interesting you're saying no need for the high level supplements. It makes sense as my body's digestion should be intact enough to digest the caplse/b12 properly. I'm assuming do this in the morning on an empty stomach? I'm scared about the neurological stuff the most. I feel it all over right now this morning. The issue with leg strength has been going on a long time very subtly along with some depression, bloating, and trouble gaining weight. The real neuro stuff like foggy head, pins and needles, and twitching just started this month. Hope it's not too late.

Sleepybunny - wow thank you for all the resources. Looks like ingot some reading to do.

Gambit62 profile image
Gambit62Administrator in reply tolownskater52

PA is the most common absorption problem - the reference to anaemia is an historical misnomer as macrocytic anaemia (larger rounder red blood cells) is a symptom of B12 deficiency. PA is actually an auto-immune gastritis.

There are other absorption problems.

The symptoms of B12 deficiency are the same whatever the cause but absorption problems can have other consequences. Establishing PA as the exact cause can be extremely difficult because there isn't currently a definitive test and the tests there are at the moment have some severe limitations.

I would suggest that you rule out dietary deficiency first - though the fact that you have stomach issues does suggest to me that there may be an absorption problem going on - so testing eg for h pylori infection would be a good idea.

Gambit62 profile image
Gambit62Administrator in reply toGambit62

PS - people don't always come back to posts. You can mention someone - which will send them an alert - by typing '@' followed by their name - and selecting their name from the list that comes up. Have edited responses above so now mention people

Sleepybunny profile image
Sleepybunny

Hi again,

"All other values were normal (folate, iron, ferritin, CMP normal)"

Have you got copies of the actual results or were you just told everything else was normal?

I learnt to always get copies of all blood test results after being told everything was normal and then finding abnormal and borderline results on copies.

Did you have a set of iron tests or just serum iron and ferritin?

labtestsonline.org.uk/tests...

CMP (Comprehensive Metabolic Panel )

Not sure if this term is used in UK so this is a link about CMP test for anyone unsure about what CMP test is.

labtestsonline.org/tests/co...

Have you got results for Full Blood Count (known as Complete Blood Count in US)?

H Pylori infection

patient.info/digestive-heal...

Coeliac disease (spelt Celiac in US)

Have you ever been tested for Coeliac disease?

In UK, guidelines suggest that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

If in UK....

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Any exposure to nitrous oxide?

Nitrous oxide is sometimes used as part of pain relief or anaesthesia. Nitrous oxide inactivates B12 in body.

UK link about nitrous oxide

gov.uk/drug-safety-update/n...

Any chance of internal parasites eg fish tapeworm?

Fish tapeworm can lead to severe B12 deficiency in humans.

Any medication that might interfere with B12 levels ( or folate levels)?

See Risk Factor links in my other post.

ncbi.nlm.nih.gov/pubmed/275...

ncbi.nlm.nih.gov/pubmed/212...

Guidelines for B12 deficiency

Might be worth finding out the national or regional guidelines for treating B12 deficiency in your country.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

In UK, the NHS mainly uses hydroxycobalamin to treat B12 deficiency. There are other forms of B12; some on this forum use cyanocobalamin, some use methylcobalamin. There is also adenosylcobalamin.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Some of the links are to UK info so you may find that the units and ranges are different to those used in your country.

lownskater52 profile image
lownskater52 in reply toSleepybunny

Hey SB,

I ordered the tests myself and absolutely have the results. From 4/16: B12: 159 (200-1100) , Folate 16.4 (anything above 5), Iron 121 (50-180), ferritin 218 (20-345). I'll just attach my recent results to give you guys an idea.

lownskater52 profile image
lownskater52 in reply tolownskater52

I dont see how to post pics on this forum...

lownskater52 profile image
lownskater52

As for now, I'm having a hard time tonight. I'm pretty spacey in the head tonight. Having trouble thinking. Neuro issues around the body too. Taking me a while to type this up. Its scaring me a bit.

I had my first b12 shot of 1000mcg cyano yesterday and plan to get another one tomorrow and every other day until I've done 7 or 8. Then switch to once a week as see how I do. I'm also supplementing with oral b12 (sublingual stuff called vegansafe). Havent noticed any benefits yet and if anything, my neuro/head stuff seems to be escalating a bit which has me scared a bit. Idk what else to do

lownskater52 profile image
lownskater52

P.S. Does anybody notice their symptoms get worse at night?

lownskater52 profile image
lownskater52

Oh and also, is there any sort of rebound period when you first start taking b12 supps/shots where your symptoms increase before they get better? Mine seem to be worse after a couple days on the supps and 1 shot. Especislly the head stuff. Nervous about it.

lownskater52 profile image
lownskater52

Just woke up. Got maybe 5 to 6 hours of sleep last night. Somehow with starting b12 shots/supplementation 2 or 3 days ago, I feel worse than when I started. My legs and arms are super weak, I'm spacey in the head, have pins and needles on my extremeties, and have anxiety. I've read on here things can get worse before they get better which is frustrating but I hope this leads to something good and that I'm not hurting myself even more. This does contradict those stories you see online where these people have miraculous recoveries after a week of shots or something like that. Makes me question what I'm dojng.

Headed to get shot number 2 this morning. Going to est a nice big piece of watermelon right after for potassium. I'll keep anybody following this posted.

lownskater52 profile image
lownskater52

Today was amazing.

Last night my symptoms of tinglining/twitching, confusion, balance/gait issues, anxiety all amplified dramatically and I was feeling pretty scared. I woke up this morning and some of the symptoms had disappeared but I had to drag myself out of bed and put on a fake smile on the way to work. Prior to going to work, I stopped in and got another 1000 mcg b12 shot. Within an hour, things had shifted. My energy levels went way up, the tingling/twitching mostly went away, and my mind was clear. The biggest thing though was that for the first time in literally years, I had some strength in my legs, specifically my left leg which has atrophied significantly. I walked today mostly without issue.

To me, this cant be real. I've struggled so long with these problems that I'm not going to get my hope's up right now. But this is certainly encouraging. It's like at night when the body is at rest, the symptoms come back like your body is booting everything back up and a stiff shot of b12 in the morning was the gas pedal for me today. I can already feel the tingling and spacey head feeling coming back as the sun goes down. No fear this time though.

I'm in no way out of the woods yet but I have hope for the for the first time in a long time. Will continue to keep this thread posted to hopefully help someone else.

Sleepybunny profile image
Sleepybunny in reply tolownskater52

Hi again,

Quite a few on the forum report that their symptoms get worse for a while when they start treatment, before starting to improve.

Glad to read that you're having signs of improvement.

"Going to est a nice big piece of watermelon right after for potassium"

Some people can experience a drop in potassium levels when they start treatment. I think bananas are a good source of potassium.

lownskater52 profile image
lownskater52

Today was back to being a down day. Feel like I took a step back. Doing shots every other day and today was an off day. Had sublingual b12 this morning (Vegansafe). I was walking pretty well today but my energy was low and I'm getting these waves of depression coming on. I also tried working out a bit this morning with some simple floor exercises and I was very weak, even compared to before I started supplementing b12. I have a shot tomorrow morning that hopefully brings me back up. Trying hard to be patient. Dont really understand why today was like this but any support or info would be appreciated.

lownskater52 profile image
lownskater52

Today was a weird day. Started off taking a 500mcg tablet of cyanocobalamin in the morning on an empty stomach and almost instantly I get a wave of negative symptoms that amplify throughout the day. Brain fog, depression, lower body weakness and symptoms I never had before prior to starting supps 1 week ago like pins/needles and twitching.

On the plus side, this shows that I can absorb b12 through normal channels and that my b12 deficiency is likely caused by my 7 years of strict veganism without supps. On the bad side oral supps (I also use VeganSafe which is sublingual methyl and adeno) cause my symptoms to escalate dramatically and I feel much worse.

I then went and got a 1000 mcg cyano b12 shot and felt pretty good after. I typically feel like a million bucks shortly after a b12 shot and feel like crap shortly after oral supps. Does this happen to anybody?

No magic recovery yet. Still nowhere near I where I want to be. This is going to be a long journey. I hope i haven't ruined my body...

lownskater52 profile image
lownskater52

Day 8. Today was a bad day. Woke up tired and tried to do some light exercise like push ups and sit ups. I was very weak. Weaker than when I started supplementation. My legs were also very weak. I'm also not gaining much weight and feeling really depressed and down. My digestion is also acting up. It's been 1 week since supplementation has begun and while I feel really good after a shot, the sublinguals make me feel worse and overall I dont feel great. Maybe worse. I've heard b12 deficiency symptoms can get worse at initial supplementation so I'm praying that's the case.

Went to my doctor today to follow up on my blood tests from 5/1. This was only one day after I started taking supplements. I was still anemic (RBC 3.88, 4.2-5.8 N, Hemoglobin 12.4, 13.2-17.1 N, Hemocrit 36.6, 38.5-50 N) and I got some interesting results in regards to testosterone. The overall number looked ok at 481 (250-1100 N) but my free testosterone was low 32.2 (46-224N), bioavailable T was low 63.5 (110-575N) and my SHBG was high at 72 (10-50 N). So while the top line number appears normal, the actual amount available for use is pretty low. I'm going go create a separate post for this but is there a link that extremely low B12 can cause low T/sex hormone problems? Probably another reason I'm tired and weak. All other test performed came back perfectly fine. CMP (Liver function, electrolytes, blood sugar), TSH, Vitamin D, folate, and cholesterol all came back solidly in the middle of the ranges with no borderline low or high numbers. My doctor prescribed me b12 shots and referred me to a hematologist for the anemia and a neurologist for the leg issues and weakness. I hope they check everything they can with me. I'm going to see if they can help me get short term disability while I try to heal from this.

I also received bloodwork results back today from a separate test. I took a limited blood test yesterday 5/7 at the 1 week mark to see if any progress had been made. There were mixed results. The most recent tests from yesterday were just a CBC and homocysteine. The homocysteine issue looks to be fixed for now as it has dropped all the way from 29.1 to 6.5 (<11.5 N). This is clearly in the green so this must mean that the b12 supps have corrected that issue for now. The results did show that as of yesterday, I'm still anemic with numbers: RBC 3.96, 4.2-5.8 N, Hemoglobin 12.7, 13.2-17.1 N, Hemocrit 36.6, 38.5-50 N). Which show minimal improvements. I might start a separate post on this but how long does anemia typically take to resolve itself with b12 supplementation.

Thanks for reading my long post. Any help or insight is appreciated. With love.

YogiGreg profile image
YogiGreg in reply tolownskater52

Hang in there @lownskater52! I'm a vegetarian (not far off being vegan) for 9 years and diagnosed with Vit B12 deficiency end of March this year. It's my own fault for not knowing better (I did my research prior to becoming a veggo so this type of thing would be avoided, obviously missed the B12 bit), my folate / iron / etc were all spot on, no anaemia or absorption problems, simply deficient in B12 (170 for serum B12). I displayed all the usual symptoms on presentation to the doctor - heart palpitations and irregular heart beats, shortness of breath, dizziness, confusion, memory loss, hard to focus, blurred vision, tinnitus, depression, anxiety, mood swings, irritability, spinning head, loss of balance, skin felt like it was sunburnt. I didn't have pins and needles in my arms or legs, was sleeping well and no fatigue issues.

Doctor put me straight onto Hydroxo B12 shots (1000) once a week for 3 weeks. After the 1st shot for 24hrs felt like rubbish and then for 5 days after that felt amazing and remember thinking to myself, well that was easy. After 3 weeks I was worse and had developed additional symptoms, pins and needles, sore and swollen tongue, weakening of muscle (I'm a yoga teacher part time, so was fatiguing very quickly) - however my heart palpitations and shortness of breath have improved. Thankfully here in Australia you can buy over the counter B12 shots, I found the initial 3 shots were not enough, so have been self injecting up until now once a week. So in total been on the weekly shots for 7 weeks until today. I have read many times over on this forum (and others) that particularly for neuropathy symptoms they can worsen before improving as your nervous system begins the healing process, I've read that it can take months or even longer - very much dependent on the individual though as to how long and how bad you were prior to starting the B12 supplementation. I'm at 7 weeks now since starting my injections and feeling no better then before and with the new neuro symptoms added on top. I take heart in the fact that the symptoms are worsened as they are now healing and sometime in the near future I will start to improve. Fingers crossed. And it's not a straight linear line of improvement I've found, I had a whole week a couple of weeks ago of feeling really good, then went downhill again. But again, everyone heals differently, everyone's story is different, so my learnings quite possibly won't apply to you. Best of luck hey! :)

lownskater52 profile image
lownskater52 in reply toYogiGreg

Hey yogigreg. Thanks for the long and well thought out posted. It is appreciated very much.

Sounds like you and I have a very similar story in a lot of ways. I never had neuropathy until supplementation started too. The muscle weakness now is unreal. I wasn't this weak prior to supplementation so not sure how that makes sense metaphysicalpy.

It also sounds like we got a long way to go man. My doc also prescribed 1 shot a week but I'm doing 1 every other day for 2 weeks followed by twice a weak after that. I'm at 4 shots so far with my 5th today. Hopefully we can both heal ourselves and continue with the plant based diet simultaneously.

With love.

Meblue profile image
Meblue in reply toYogiGreg

Another vegetarian here, but I’m not sure yet this is my problem. I have symptoms pretty much just in my legs and the last test I took was 560 b12 level so I’m trying to see if I can get an MMA text or something. Been a vegetarian for 20 years with perfect health, so I’m not sure this is my problem. I also did not think too much about b12 because I started such a long time ago that not much was talked about. I always took a multivitamin, but I wouldn’t be able to tell you how much b12 was in it. Right at the moment I’m just trying to get as much b12 in each meal as I can rather than supplement - fortified cereal, tons of yogurt, fortified soy milk, eggs, regular milk. I’m getting about 13 mcg just by these foods. I’m hesitant to start eating meat again since I haven’t eaten it in so long - not sure what it would do to my stomach. Do you have any problems with your legs - pain, numbness?

YogiGreg profile image
YogiGreg in reply toMeblue

Hey there Meblue . Actually the one symptom i didn't get was leg issues thankfully - so no pain or pins and needles or numbness. I did experience some fatigue in my legs after starting the injections especially when hiking. In terms of diet, there's no reason to have to go back to meat i don't think. With all b12 fortified food and dairy you're eating, you definitely have it covered. I intend doing exactly the same thing once I've my levels back up and no longer need injections. If it comes to it, I'll take oral supplements than go back to eating meat. All the best hey 👍😁

lownskater52 profile image
lownskater52 in reply toYogiGreg

Interesting. My legs have weakened some after starting injections 2 weeks ago. How longnfidnthat takento resolve?

YogiGreg profile image
YogiGreg in reply tolownskater52

Well i had fatigue in my legs for the first time 2 weeks ago when I was hiking, but have layed off the exercise since then so all my energy goes into healing, so haven't worked my legs hard enough to know if they are still fatiguing. I am going on another half day hike this Saturday, so keen to see if the fatigue has gone. Certainly feeling improved this week compared to last week so that's a good sign, but have been on weekly injections for 9 weeks now so it's about time there was improvement... haha. Hope you're holding up well my plant based friend.

lownskater52 profile image
lownskater52 in reply toYogiGreg

Thank you brotha. Hope I can join you with the improvement here soon.

YogiGreg profile image
YogiGreg in reply tolownskater52

You will brother, you will. Sending love.

Meblue profile image
Meblue in reply toYogiGreg

Yes, eating meat is not something that appeals to me right now. I can’t even imagine eating things like liver - ughhh. I have read that dairy is actually better absorbed than meat anyway, and I’m hoping that is true. I wish I could figure all this out. I used to be a marathon runner and triathlete and now I can hardly walk without being in pain - so depressing.

lownskater52 profile image
lownskater52

Decent day today on day 9. Felt ok waking up. Legs had some strength. Did a fair amount of walking/stairs throughout the day. My legs feel absolutely gassed right now. Rubbery for sure. Got a methyl b12 shot in the thigh today and had a surge of clarity and happiness. Supplemented again tonight with a small amount of sublingual cyano so I can have some crazy dreams.

One this I did notice today was after the b12 shot, I did experience some slight tingling in my extremities and am experiencing them now after the sublingual b12. That's not that unusual. What was unusual was I had some pins/needles feeling in my groin area. Felt pretty weird. Maybe my body is reestablishing connection to that area as I've had low libido and low free testosterone for a bit now. Another thing I've notice (and excuse me if this is too personal) but I've noticed my semen is much whiter. Before it was essentially clear. I've read b12 is needed for spermogenesis so that makes sense.

Going to try oral b12 tomorrow and see how I do. Had trouble with it before. Trying to find another option rather than the shots as they are very expensive.

lownskater52 profile image
lownskater52

Yesterday was a great day follow by today which was not good.

Yesterday I woke up pretty clear headed and energetic. Got a b12 shot in the morning and worked out at the gym. Gave it about 80% effort. Pretty weak still but felt good. I ran errands throughout the day and noticed for the first time in a long time, I felt the strength and stability to stand and maneuver in my legs. Not a lot, but enough to get me through the day. By the end of the day I was pretty gassed (tired/exhausted) below the waist and I ended up going to sleep early.

I woke up after sleeping 12 hours straight and I was the opposite of the day before. My head was cloudy as soon as I woke up and I was still tired regardless of the 12 hour sleep ingot the night before. I tried to go work out but left after 20 minutes due to just being too tired and not into it. I did some oral b12 supps and they didnt really help. I went and got another b12 shot and felt some clarity for a while but it faded and I couldn't recapture the feeling the from day before. Now I'm getting ready for bed and my head is cloudy and heavy, having some slight hearing issues/tinnitus, and just overall malaise. I also developed a canker sore in my upper lip. No common neuro issues right now though. No tingling, no twitching.

Today was a step back. I have gained some weight though which is a positive for me. I started at 122 lbs and measured in at 128 Lbs 10 days after supplementation. That's a positive sign I supposed. Hoping for more improvement.

lownskater52 profile image
lownskater52

Just checked my blood pressure and pulse and they are noticeably lower than normal. Thay might explain my head issue. I dont know know why this would be happening as my fluid intake has been good, I've been eating high amounts of fruit with electrolytes and my elimination has been normal. Might take a day off from b12 supps and see what happens.

lownskater52 profile image
lownskater52

So today is the 2 week mark since I started supplementation so I'll do a quick overview of my status and the developments I've had today.

So I've had 10 B12 injections in 14 days (5 methyl and 5 cyano) while simultaneously taking oral supps daily; switching between cyano, methyl, and methyl/adeno. I've been drinking plenty of water, eating healthy and getting plenty of sunlight. Doing anything I can to be healthy and let me body heal.

The first thing to talk about is oral supps. They make me feel like crap. They make my symptoms a whole lost worse. Injections seem fine. Any idea why that is?

Below are individual updates so far (good and bad):

GOOD

- Weight - I'm chronically underweight (5'10, 123 lbs) but I've gained 3 lbs to 126 lbs in the 2 week which is a small victory.

- Walking/Gait - Both of my legs and butt are wasted with my left leg being very wasted and I've been having problems walking for years now. I'm beginning to feel strength and stability come back to my legs and specifically the left, very wasted leg. I can walk further than before and feel more planted standing or walking up stairs. I dont think I've gained any muscle. I just think the nerves are working better.

BAD

- Digestion - My digestion is worse now than when I started supplementing. Especially after oral supps rather than injections. Bloating and mild constipation are daily now.

- Neuro - I feel out of breath easily and I can get faint after standing very easily. These were not really issues prior to supplementation.

- Stength - While I've gain stability in my legs, my overall body strength is less. My upper body and lower body are both weaker when it comes to exercise and strength.

- Anemia/Test Results - My most recent test results 2 weeks after starting supps are now worse than when I started (more below). My anemia appears to be worse.

I went to a hematologist today for the first time. Nice younger Indian doctor who genuinely listen to me. He looked at my test results and agrees I have pretty serious b12 deficiency. He prescribed me more b12 injections (which is great) and agreed to run a bunch of tests for me. He'd checking for the PA antibodies to see if I have pernicious anemia or if it's just from lack of b12 in the Diet, testing for vitamin b6 def, thiamine def, copper, and some other random tests. I set another follow up for 6 weeks. I think I got a good doctor.

He also ran a CBC blood test in the office. Surprisingly, my anemia numbers are worse than when I started supplementing 2 weeks ago. This post is a more detailed breakdown of the test results ( healthunlocked.com/pasoc/po.... ) Essentially, my White Blood Count and Hemoglobin are better with everything else being worse (Red blood cell count, Hemocrit, MCV, MCH, MCHC and platelets all worse than 2 weeks ago). This doesnt make sense to me. I know my anemia would take a while to correct itself but why would it get worse after 2 weeks of supplementation.

If anybody could shed some light on this I would very much appreciate it.

With love.

Meblue profile image
Meblue in reply tolownskater52

Everyone says that you will feel pretty bad for quite awhile and you have been only doing the shots for a couple weeks. Some people on here have talked about taking years before they were better. I think maybe you are just in the early stage of healing. I read a separate post about a woman that was deficient with a level of 260 and she said she didn’t see any improvement at all for 6 months. She said it took 2 years to get back to pretty good. I don’t know why your oral supplements make you feel bad - maybe try a different brand. I’ve heard that the Jarrow sublingual is really good for healing (the methyl).

lownskater52 profile image
lownskater52

I've done some more research and I may be exhibiting signs of hypokalemia. I'm weak (have only been able to do half as many pushups or any exercise for that matter), fatigued (sleeping 9 hours a night and still being tired in the middle of the day), I'm seriously bloated and every time I take b12 I've been getting twitching all over. I'm twitching right now all over. Hypokalemia develops with b12 supplementation due to hematopoiesis (creation of red blood cells) using large amounts of potassium. If I'm low on potassium, I'm not going to be able to create as many red blood cells, hence the worse numbers. I may go get checked out here soon to ensure I'm not in any danger.

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