Having a Rough Night

[lownskater52]

Hey guys,

Regular member/poster here. Having a rough night. Just watched a documentary about b12 deficiency on YouTube and it's got me scared I may never fully heal (31 yrs old, vegan, my b12 was 159 and has been deficient for probably 9 years, all other cofactors normal). Combine this with the fact that I've been supplementing for 5 weeks now and while I started out with strong improvements, I've had what feels like a step backwards with symptoms i never had before supplementing (tingling in the hands and feet, brain fog and concentration issues, and weakness in the leg worse than when I started). Just feeling scared and wanted to reach out to you guys. I've seen a lot of post on here recently of people starting supplementation and having negative symptoms come back, worsen and stay around for long periods of time. Its chocked up to healing but I'm still concerned.

Just venting I guess. After 7-9 years of low stomach acid, vegan diet caused serious b12 deficiency and anemia, I figured after a month+ of heavy supplementing I'd have my old body and old life back. Definitely wasn't planning on feeling worse a month later. Guess I need to readjust my expectations for the long haul. Just hope I'm doing the right thing.

Thanks for listening/reading.

[pvanderaa]

Why did you choose a vegan diet? Were you aware of the need to supplement B12 back then?

Nerve damage is very scary. If you’ve had nerve damage, the repair is very very slow so you need a logbook to monitor any progress. It’s months and years. Some nerve damage is permanent.

Worry and anxiety are two psychological symptoms that can arise from the neurological damage. Stress seems to consume B12 faster.

Are you on B12 injections? You need blood test results >1500 pg/ml to halt further nerve damage and start the healing of any nerve damage.

[lownskater52 in reply to pvanderaa]

Hey pvanderaa,

Yeah my last b12 test a few weeks ago I was off the charts so to speak at >2000. I'm getting 2-3 b12 shots per week and taking sublingual supplements as well. I've read hours and hours of material from this website and knowledgeable people like yourself. I'm doing everything I can to correct this. Just feel bad and having a bad night mentally.

[Bowtruckle in reply to pvanderaa]

Quick question and sorry to jump in, do you have any evidence of the need to have levels above 1500 for the nerve damage repair? I'm desperately looking for any journals or evidence that says things like this before my specialist appointment.

And sorry you were having a rough night lownskater52, we all get them, and it can be a very long, slow healing process. keep your spirits up

[pvanderaa in reply to Bowtruckle]

Please, always feel free to ask for clarification.

Others have asked the same in the past and there hasn’t been a study like that to my knowledge. Why anyone set a 900 pg/ml upper limit on a water soluble vitamin that your body pees away such that you can’t overdose, is beyond me. My experience with nerve damage is that, when B12 is high, not only does the damage stop but healing symptoms occur. But nerve repair is fragile and any set back seems to put me back at square one.

I wonder what the spike B12 level is a few hours after injections?

If you are not on injections and your B12 is high then that is something to look into.

[Bowtruckle in reply to pvanderaa]

I just wondered as mine is high but I’m on injections so I know it will be high. Mine seems to be hovering at about 1700 and I’ve just convinced my doc to give me 4 weekly rather than 8 weekly. (By shoving lots of research at her). Downside is that is temporary until I’ve seen a gastroenterologist. So hoping to gather as much info before then with regards to b12 levels and frequency of injections etc. Before I see them so I am armed for any eventuality.

Everytime I go for my injection the nurses are forever going ‘oh your levels are high though dear’ to which I reply ‘that’s because I’m having injections’ and it’s always the same response ‘not that high - perhaps we should test them again/speak to your doctor about them’ blah blah blah. 😂

Maybe I should make a badge. 😂

[Nackapan]

Yes I think we have all had to readjust expectations. As you say took years of leveks falling. I've read over and over again that repair work wakes up nerves . I got very ill initially but then it started to turn round. It takes time. I've still a long way to go. Are you still a vegan? Or are you able to be a vegetarian. Just a thought . I've many friends who have got b12 deficient as a vegan but took the decision for health to include more in their diet. I hope you see positive improvements soon. It is early days.

[lownskater52 in reply to Nackapan]

Thanks Nackapan.

The readjustment of expectations is the hard part for me. I started feeling great after my initial b12 shots and I thought sky was the limit. Now I'm in the depths and thinking about if I've done something wrong or if I'm getting worse. I had plans for my old life back. Looks like those are going to be on hold for a while.

I'm still vegan and will always be vegan. For me it's sort of a double whammy. Almost 10 years ago I had a terrible reaction to taking Prilosec OTC (PPI). For 3 years after that it never left my system and I was terribly ill. The only thing that helped me feel better was water fasting and veganism. I truly think my digestion has been screwed up ever since that horrific experience with Prilosec. That's the main culprit for me and I'll always believe that.

[Nackapan in reply to lownskater52]

Yes you are probably right then

. I suppose you also have to look at why you needed it as well though.

So many things are just prescribed that hopefully do help people and are tolerated. but others suffer effects from. I've had 2 trials since beong b12 defient had difficulty getting off both . Now only taking vitamins and b12 injections at present but am still ill. we have to try things though. You know your body.

[ByGrace]

As you stated to another you are injecting 2-3 x per week are you taking folic acid? Are you taking a B complex? How much B6? Your B12 level needs to be high in order to heal... if you want an "accurate" B12 level reading you must be off B12 for 4 months. It is a long haul healing process, 18 months or so for me..injecting every other day .....

[lownskater52 in reply to ByGrace]

Thank you for taking the time to write to me ByGrace. I'm not taking any folate or b6. My folate was 21.8 (>5.4 normal) last time my blood test was done about 2.5 weeks ago so I figure I dont need anymore. Also my B6 was actually considered too high (41.4 when 2.1-21.7 N). Maybe I should try folate though. A short trial cant hurt. Same with b6.

18 months. Wow. Was hoping for a quick rebound after being deficient for 10 years. Obviously I was nieve. How was you doing now?

[ByGrace in reply to lownskater52]

I inject every other day and so take 5,000 mg folic acid daily. A basic b vitamin from iherb which has low b6. I take the b vitamin for 4 months and then off for 2 months to prevent a b6 build up. Prior to B12 injections, I was house bound and couch bound. I didn't feel like I would live a few months more as I had nothing in me. I am still unsteady but not about to tip over from a still and standing position. Much improved. I am recovering. My arms still wobble.. and can be unsteady... but way better, A lot of neuro issues healed or healing. You need a high amount of circulating B12 to heal neuro issues. If it were not for the pernicious society b12 def support group on facebook I;d be dead.

[dcason]

I was sick for 10+ years before diagnosis and symptoms had progressed to neurological. All treatment initially did for me was stop the progression. It was probably 9-12 months before I really started to turn around. There are some things that it seems now I will probably never get back (like having balance in a pitch dark environment) but I recovered a LOT of my life. Just keep going; it really does take time if you've been in severe deficiency.

[lownskater52 in reply to dcason]

Thank you for taking the time to write to me dcason. I'm almost the same. I've been deficient for 10 years. Got down to 159 serum b12. I've been supplementing for a month and can agree, at most right now my disease progression has stopped in some areas while other new symptoms have emerged. 9-12 months seems like a long time away. Morale is hard to keep up.

[kaybeena]

I was in double digits at time of diagnosis... it was three years of injections, self care and rest before I was well enough to work. And even then it it was a “practice “ job that was out of field of profession as I was scared to REALLY work as I was afraid I would not be able to handle it...

Be very patient and don’t give up.

I too follow a vegan diet... had been vegetarian for 10 years and vegan for 7. A lot people told me to start eating meat... my doctor told me I could eat an entire raw cow and it wouldn’t help at that point (whew).

You will get better... but years later I still have rough patches. Try to stay postlitive and be thankful and honest with yourself.

Meditation help settle my mind quite a bit.

Good luck my dear.

I am also interested in what documentary you watched... please share. Xoxo

[lownskater52 in reply to kaybeena]

Thabj you very much for writing to me. This post was very encouraging to me.

Wow. Double digits is crazy. Scary. 3 years seems so long. After being sick for so long. I just want my recovery to be quick so I can resume my life I've been dying to live. Guess that's still on hold.

[kaybeena]

PS. Try making a beverage of Braggs apple cider vinegar (or any with the mother) and honey (I know, not vegan, but maybe find some local or one you feel good about)... drink Themis 3 times a day for a week, then twice a day for week, then once a day or as needed. It is actually lovely with a wedge of lemon before bed. Your digestive issues should resolve themselves. #healthandhealingchef #vegan (except for honey 💚)

[CatrionaNason]

Once you have started B12 treatment your blood tests are pretty invalid as they usually come in at a high level. That does not mean what us circulating in your blood is in your cells. Pointless testing better to go on symptoms. It does take time to undo the damage but never be disheartened as with every month you are improving - even if you don't feel it. However, don't miss any other potential health problems. I have had a Meningioma brain tumour, Pituitary tumour, Cushing's Disease, Pulmonary Embolism & Pernicious Anaemia. Most people will not have other conditions but you have to be alert, depend on your intuition, always question, never accept what you feel is not right, research your symptoms, advocate for yourself, don't doubt yourself, never allow ANYONE or any MEDIC to undermine you or trivialise your suffering AND never give up! Don't ever accept statements such as......., ‘Its all in your head’ - You cant have that, you would be TOO ill’ - ‘All your tests look normal’ - ‘Maybe it's just you’ - Lets see you in another year’ - You’re B12 levels are fine’ - ‘I have no idea why you are suffering, blah’ - ‘You have had every test’ ‘

‘Lets try anti-anxiety medication’ - Lets try anti-depressants’ - ‘Why are you vegan’ - Try eating more meat’ - ‘B12 Deficiency wouldn't cause that’

Sooooooooo - don't give in, don't give up, don't tolerate it. Listen to yourself, trust yourself, shout & scream and get the help, support and medical intervention you need. GP’s and many specialists have NO clue in relation to B12 Deficiency/Pernicious Anaemia - WE must educate them, demand the right action from them, and NEVER accept anything less than we deserve. Why are we apologetic? Why do we feel as though we are wasting medical time? Feel as if our suffering is our fault or imagined. If we must justify our symptoms, suffering and deep concerns. This is YOUR life, your health, your family's well-being and ultimately your ability to get well and live a life of quality not pain and suffering - based on the medical profession’s understanding and acceptance of your illness. Take back control of your life and wellbeing and Do Not Be MADE to feel as if you are complaining about a toothache! I am so sick of the mistreatment, mismanagement, delayed diagnoses and the medics lack of education and will, towards our community. Catriona x