william

[Wllliam]

ihav e improved havein g national health b12every 12weeks since I have paid inbetween to have private injection six weeks inbetween worrying .I'm havein g to much

[wedgewood]

You have no reason to worry about having too much B12 . It is a scientific fact that vitamin B12 cannot be overdosed . Some patients inject daily if they need to, without any trouble . . Self injection is obviously the cheapest way of getting extra B12 . Information of how to do that is available should you so wish. Cost ? About £1.60 for everything. ( ampoule , syringe , withdrawing needle , injection needle , swabs. ) Really pleased to hear that you have improved .

[Wllliam in reply to wedgewood]

Thank you Wedgwood i was so ill year and half ago broken leg teeth out.lost stone and half. Doctor gave me injections every eight weeks three times then put back to twelve weeks.so I paid myself every six weeks inbetween.I have improved but doctor say my levels high.

[wedgewood in reply to Wllliam]

Your levels need to be high if you have P.A. . Mine are always off the scale. Don’t let the doctor tell you that your levels are too high . I don’t go to the surgery any more for my B12 injection . I just self-inject . I find I can self inject without any pain at all , but the surgery injection was often painful . I use my thighs , not arms . Much easier .

[Nackapan in reply to Wllliam]

Yes I was told tgd sdnr.Thd whole point of injections is to keep levels high.

I was told thus by a neurologist who told me to have 2 weekly !!

Go by how you are feeling

Hope more frequent Injections help you .

As wedgewood says ...don't worry.

[jade_s in reply to Wllliam]

Same here, what wedgewood & nackapan said. You absolutely 100% cannot overdose on b12. My levels are through the roof. I've been injecting twice a day for 6 years and am nearly the healthiest I've ever been.

[EllaNore in reply to jade_s]

How would one know when they needed to go to twice daily? I've only been doing this for 4 months. one and a half months I've been doing it daily the other half I was trying to find my dosing and depending on a doctor. Now I'm self-injecting every day, but I wish I was feeling better, how would one know if they need it twice a day? I don't know when to expect my symptoms to get better how long should I wait to see if this is as good as I'm going to get? I feel like I've reached a point where it's not going to get better than this.

[jade_s in reply to EllaNore]

Hi EllaNore, I figured out I needed it twice a day after about 6 months of once daily. The first 6 months were quite a roller-coaster, so none of my symptoms were really clear-cut. But after everything settled down, I'd notice that I wake up stumbling about. After the morning shot my balance would go back to normal. But by the late afternoon / early evening, I'd be falling over myself, hitting walls, swaying going up stairs or getting off the couch, dropping objects. For me this was a clear sign that 1 injection wasn't lasting all day. In fact, my balance issues were one of the last symptoms to appear and one of the first to improve, so it was a good first sign of going low for me. Tingling and energy levels were less reliable indicators for me, as they varied way too much day-to-day and hour-to-hour.

I'm sorry to say that 4 months is not very long when it comes to B12D. For me, those first 6 months things varied so much from day-to-day, and there were quite some weeks where I thought I was plateauing, only to realize one day weeks later that some other stubborn symptom had started to improve. Healing isn't linear by any means. I know it's tough to hear, but do give it some more time.

I also think that the longer we've been deficient, the longer it takes to heal. My relatives, who started very early after symptoms appeared, only needed a few months to feel almost normal again. For me it took at least 1 year to feel like I wasn't dying and couch-bound, another 1 year to start doing some very light activities like doing 2 things a week (like a doctor's visit and a shopping trip in the same week), and another 2 until I could work part-time (just barely). I'm at nearly 6 years now and have only recently stopped calculating how many days of down-time I need after some activity or trip, but I still do need to be careful not to overdo it over many weeks.

Soooooo, I don't mean all that to scare you, but to maybe help you adjust expectations. I fought against it for a long time, but eventually had to accept it was going to take as long as it was going to take. Keeping a symptoms log really helped - I was able to look back and see how far I'd come, or showed me that some symptom that I thought hadn't improve, actually had.

In my case, upping to 5mg folic acid also helped. My blood levels are fine, but I get extremely exhausted, bad psychological side-effects, and tingling returning when I try to stop or reduce it. So in my book, it's always worth experimenting to see if low folate is an issue. Some people also do better on folinic acid or methylfolate.

I've also had to fix low iron, low Vit D, and low thyroid to regain energy.

I've had been meaning to reply to your other post about how active people are. I will still try to do so, but in summary: I think I'm finally at the point where I can almost be as active as a "normal" person.

The b12 forums are what kept me going. Reading positive posts, seeing that other people had made it to other side also helped. I am sure you can get there too, it's just unfortunately a very long slog. Sending hugs xxx

[EllaNore in reply to jade_s]

OMgoodness Jade_s, I can not thank you enough for what you wrote. You described me exactly. It is so helpful that you shared all of this very unfortunate infomation. I am sorry you suffer this disease. But you are helping me so much and I am sure this is going to help others.

I truly feel I am a 37 year suffer of this, I also had Lyme disease just as long so I have suffered some long-term symptoms. I seriously feel by the end of the day that I want another injection. I am stumbling, slurring words, getting words mixed up and completely crashing by 4pm. even sooner if I do anything at all that is active. Active doesn't even have to be physical, it can be mental. if I work on my computer too long, I get very brain tired, and crash fast.

It used to take me 2 to 4 days to recover after mowing my yard using a walk behind gas mower. I now had to buy a riding mower as I can not walk behind my mower anymore. I have to shop in small increments. I get a few things and then I have to leave. I felt I was going to pass out at the self-check out. I was sweating profusely and breathing hard and someone asked me if I was OK. I hadn't even realized, how bad I was. My legs were shaking and I felt like I could barely walk out of the store. It is at those times that I feel I definitely need another injection. That is going to get quite costly for me. Maybe I can just inject again if I start to crash. Or if I know I have a lot to do.

I have not been able to go anywhere or do any fun stuff for more than a year. I can not work. I for the most part don't do things with friends as I will just hinder their fun. Right now at least. I know if I go for a walk in the park, that I will have to recover the next day or even two. Driving is difficult too. Mentally and physically.

I purposely skipped a day to see how I would feel. I felt ok that day, but in the morning I was stumbling and discombobulated and worse. It lasted 2.5 days. So I know I can not skip a day. So now with you writing my life story LOLOL I think I need supplemental injections for when I am crashing.

This has been so helpful. You explained my symptoms to a T. I am now very clear on what symptoms are from PA and what aren't. All of them are LOL. The mental stuff scares me a lot. I'm scared I won't get that back. I am just not myself mentally. Struggling with that a lot. Anyway, thank you so much for taking the time to write this. I know how hard that can be for us. I know it takes a lot of mental energy to write in this forum. Very draining. Thank you

Be well.

[Sleepybunny]

Hi,

Pleased to read that you have improved.

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

(from Dutch B12 website - units, ref ranges and treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Misconceptions (wrong ideas)

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

[Hidden in reply to Sleepybunny]

Thank you for that, Sleepybunny (what a lovely name) I wish doctors had the time to read all of this research but I can understand they have so many other patients with different diseases. They are only human and like us all have only so many hours in the day. My GP is terribly busy and it's hard to get an appointment with her so I often have to see another doctor or have my injections with the nurse....but when I do see her I ask her about so many things I have learnt and if she doesn't know she will look it up and talk about it next time. I think I have educated her with some things she didn't know but she isn't too high and mighty to be "told" by a patient (like my former know-it-all doctor). She never belittles me if she has a difference of opinion, like he used to do.

[EllaNore in reply to Sleepybunny]

Great stuff SleepyBunny. I also clicked on the links to the right of one of these pages and found a ton of great info. Thanks so much. Like you don't have to be anemic to have PA and I have been told the opposite. I want to print all of this out and hand it to every doctor I have. LOL. I am definitely going to share it with my cancer doctor. she seems to be interested. I see her in 4 months so I thought I would print some of this and give it to her. They have a lot of patients at the clinic with PA. Probably caused by chemo. I'm sure they are all undertreated and suffering. I should make small flash card handouts for every time I need to enlighten a doctor. haha

[wedgewood]

Useful links ! Thanks Sleepybumny !