Borderline B12 Deficiency with neurological problems

[leesielocket]

Hi, I'm here in search of help for my husband. His symptoms started with a mid back ache, inability to climb stairs, strange sensations (sensitivity to cold and heat) followed by tingling in hands and feet, then his balance started to go downhill. His GP did a lot of blood tests and said his Vitamin D was deficient and his B12 was a little low (340). His folate was 5.1 (GP said that was fine but I think it's a little low). He's now received 2 B12 injections (one per week) and is taking Vitamin D supplement. Symptoms seem to be worsening, though, and I'm worried. After reading all the posts here about getting daily or every other day loading injections, I was afraid that they just weren't enough so I bought some sublingual methylcobalamin as well as a folate supplement for him. The first one seemed to help within an hour or so (balance was better, tingling lessened) but the symptoms soon came right back. I'm wondering if this is truly a B12 deficiency or something else. Should he be getting more frequent loading doses? Any help is much appreciated!

[clivealive Forum Support]

Hi leesielocket it is not uncommon for some neurological symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to the nervous system.

Your husband's B12 level is low but I guess his doctor deemed him not to be "deficient" or having P.A. for which "loading doses" would normally be prescribed. However if you are concerned make a list of his neurological symptoms, present this to his doctor and ask him to continue injections on an every other day basis "until there is no further improvement" in accordance with the N.I.C.E and B.N.F guidelines.

I am not a medically trained person but one who has had P.A. for over 45 years.

[leesielocket in reply to clivealive]

Thanks for the reply, clivealive. I'm going to start making a list and hopefully we can get in to see his GP this week.

[Gambit62 Administrator]

where are you based? treatment varies a lot from country to country. the regimen usually talked about in this forum is the UK regime.

[leesielocket in reply to Gambit62]

We're in the US and I can find very little about the regimen used here. I did talk to my friend today who is a Physician Assistant in a local hospital and she said that given his symptoms his treatment should be more aggressive if it is indeed a B12 issue. I emailed his GP with my concerns earlier this week and he said it will take time but also said that he would make a neurologist referral for him. The earliest appointment we could get is July 24...that's over 3 weeks away. I just feel like we're not doing enough and am afraid that will allow more damage to be done.

[Gambit62 Administrator in reply to leesielocket]

yes US more difficult - not aware of any national standards so does seem to very much depend on where you are.

B12 isn't toxic and if your husband has an absorption problem very little of the sublingual will be absorbed, You could try pushing GP for more frequent injections. You could also try taking the sublinguals very frequently.

[leesielocket in reply to Gambit62]

Thanks so much for your reply. We're going to start pushing the GP for more frequent injections and see how that goes. Hopefully, he'll give it a try!

[clivealive Forum Support in reply to leesielocket]

I aplologise leesielocket I didn't realise you were in the U.S. so my references to British guidelines won't apply although the principles for treatment are probably much the same.

I think that cyanocobamalin is the "injection of choice" in the U.S. and this would be given at four weekly intervals. I've been having them for over 45 years and I'm still "clivealive"

[Sleepybunny]

"We're in the US"

Hi leesie,

Have you read the book "Could it Be b12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart? The authors are from USA.

There is a website organised by the authors called "B12 Awareness"

PAS (Pernicious Anaemia Society)

Although PAS is based in Wales, UK it has members from around the world.

pernicious-anaemia-society....

PAS tel no [phone]

There is one local PAS support group in USA..in Missouri.

There is lots of B12 info in the pinned posts on this forum although some may be specific to UK.

[leesielocket in reply to Sleepybunny]

Hi SleepyBunny, I haven't read the book yet but plan to do so. We came across it in our research this past week and watched a video with the author and were amazed at some of the cases that were reported on and the success they've had using B12. It is amazing that so many people are misdiagnosed and not given the correct treatment!

[KimberinUS]

Im in the U.S. in Georgia and i dont believe B12 is looked at very frequently at all as a possible cause. I am not a vegetarian. I was eating meat daily, usually twice daily. My research over last 60 days has lead me to weight loss clinics for b12 injections because naturalpathic doctor was recommending pills that contained 1000 mcg methyl b12, 5000 mcg folic acid, and 50 mg of b6. I was taking 2 a day. The intent was to get my b12 up. I improved enough over 2 1/2 weeks to be able to think clearly enough to research on my own. I found that the body absorbs appox 1% thru passive absorption. That was going to take forever and did i mention how tired i was? Hands and feet going numb and tingling, anxiety, muscle weakness, aching knees, paleness, lack of contentration, beaded lines (vertical lines) on my fingernails. I have stoped taking those pills due to the folic acid in them, (i am waiting on test results to see if i have MTHFR mutation) in comparision to what our body needs which is folate and our body doesnt have to use energy to convert folic acid into folate and i need all the energy i can get. Additionally i now drink revive vitamin water for the potassium as i was cramping up and one bottle has twice as much potassium as a banana. I also eat bananas. I am now taking Pure brand methylalated multivitamin, six 1000 mcg cold pressed pumpkin seed oil pills for their bioavailable nutrients, revive vitamin water (rda for potassium is 4700 mg daily and my healthy diet was only getting me about 700 to a 1000) and juicing a smoothy with lots of spinach and fruits daily, a dead sea salt bath daily, plus a weekly b12 cyan injection weekly.

It is my belief that just pumping b12 injections, without the correct cofactors, causes side effects. I no longer have to take a 3 hour nap daily. My contentation and memory has improved, anxiety gone, tingling gone, paleness gone.

Recovery will take time. It takes 4 months for our bodies to replace all of our red blood cells but i felt better almost immediately after each addition. Meaning i felt better after b12 injections but then as a cofactor got used up i had symptoms from lack of the co factor. So i added folate and felt better but then symptoms of lack of potassium. Then added potassium and felt better again.

Hopefully if you start using good cofactors from the start your husband wont have the two steps forward one step back, situation i have had. He is lucky to have you to help him during this difficult time in his life!!!

[paddyfields in reply to KimberinUS]

Its my unqualified opinion that if you have neurological symptoms you should be referred to a neurologist..

[stumpnme1 in reply to paddyfields]

Exactly! My GP has left me feeling worse than before diagnosis and treatment. I can barely move today. I am so fed up.

[leesielocket in reply to paddyfields]

Thanks for the reply, paddyfields. We thought the same thing and I told his Dr. that as well. He said that he was hoping his symptoms were due to the B12 and that it would take time but also went ahead and gave him a referral to a neurologist. The only problem is that the earliest appointment we could get with the neurologist is July 24. We're on a waiting list in case they have a cancellation but if not, that's still 3 weeks away. So, we're doing everything we can in the meantime.

[leesielocket in reply to KimberinUS]

Thanks for taking the time to give me all that info, KimberinUS! I think I'm going to add a multivitamin to his daily regimen as well as trying the vitamin water. You mentioned the MTHFR...my husbands sister has that and said that at least one of their parents had to have it for her to have it so it's possible that he does, too. His sister also has Graves disease and had her thyroid removed 5 years ago. I told his Dr. about all of this but he dismissed it and said all of his levels for thyroid and such were fine.

You're in Georgia, right? I read somewhere on this site about a doctors office in Tampa FL called K3 Neuroscience Optimized Wellness where you can order methylcobolamin injections. The place had great reviews from people that actually go into the office for treatment so we're thinking about ordering the B12 from them and going the self injection route. Most of what I've read about the cyanocobalim says it's inferior to methylcobolamin so we're thinking it might be worth a try.

Good luck on your journey to wellness! It sounds like you are well on your way to figuring out just what your body needs to get and stay healthy.

[KimberinUS]

Thanks for the info on where to get methyl injections. I will definitely check into them!!! I have Only been getting cyan injections because it was only option available near me.

Your doctor not taking a possible MTHFR mutation seriously is so irritating. It effects our ablity to convert folic acid into folate anywhere from 30-80%!!! And without folate we cant be well no matter how much b12 is pumped in. Please get a methyl multivitamin. Stop giving him any "enriched" bread, pasta, cereal, rice, ect. Enriched means folic acid and folic acid is 1.7 times more absorbed into cells than folate, meaning the folate cant get into the cells and folic acid does not convert well, if he has a MTHFR mutatuon. MTHFR is passed down from parents.

[Woodswefn]

Those are classic symptoms of late-stage B12 deficiency. Experts say the initial treatment should be at least two weeks of methylcobalamin injections. Some say daily; some say every other day. Methylcobalamin is the form of B12 most usable by the body. It is benign. Since it is water-soluble, you can't overdose. A meta-analysis of 50 years of clinical data on B12 treatments found no cases of toxicty.

I am in the US and six different doctors couldn't recognize MY classic symptoms. Those symptoms got worse and new ones appeared. It took two years of reading medical literature for me to find the pattern and diagnose myself. This isn't well-understood in the U.S. Blood tests are inaccurate, because they show both active and inactive forms of B12. And there is no standard for "normal"; the normal range varies between test manufacturers, labs, institutions, and nations.

Unless your husband is a vegan, the deficiency is caused by an inability to absorb enough B12 through digestion. So there is no way to be sure how much of the oral supplements are getting through.

After reading hundreds of pages of medical literature from sixteen different sources, and piecing together chunks and shreds of data, I finally found ONE source with comprehensive information: the website:

b12d.org.

The website was created by a former doctor with 46 years of treating B12 deficiency with injections. He outlines the loading dose protocol. He makes his thoroughly researched book available to download free of charge.

B12 injections can be purchased from vitaminQuick in Nevada without a prescription. I haven't found any other US sources for this. The shipment includes ampoules of methylcobalamin ; syringes; and alcohol wipes. My only concern here is that liquid methylcobalamin should be stored at 65-85 degrees F, and shipping takes at least 3-4 days, Summer temps in Nevada are often over 100, and where I live, they are often over 90.

vitaminquick.com

This organization will sell you powdered methylcobalamin from Germany routed through Israel. (The German manufacturer can't sell to US customers.) You can then mix the stable powder with sterile saline from the pharmacy when you are ready to use it. The website gives detailed instructions for mixing and storage:

perniciousanemia.org.

This excellent YouTube video, made by a nurse, shows you how to give the injections:. She makes no assumptions and takes you slowly through all the steps:

youtube.com/watch?v=YUTMRYI...(Not working as expected?)

[Woodswefn]

(2 of2) If you can't get help from a doctor right away, please go to the first (nonprofit) website to read the chapters about diagnosis and treatment. Your husband might also need supplements of methylfolate and potassium, as these are also needed in the chemical reactions that require B12.

[leesielocket in reply to Woodswefn]

Hi Woodswefn, thanks so much offering all that information, but my post was made 3 years ago. Shortly after that, when he was barely able to walk, he finally agreed to go to the ER where he was finally correctly diagnosed with Guillain Barre Syndrome by the on staff neurologist. He spent 5 days in the hospital getting immunoglobulin through his iv. He's doing great now, just left with some numbness in his feet and a few small issues with his hands. He gets a complete blood work up done at his GP every 6 months now and I keep a close eye on his B12 number. It was a little low last month, so he's taking a supplement now. Since his symptoms with Guillain Barre were so similar to low B12, I wonder if there are others who have been misdiagnosed.

[Woodswefn]

I am so glad he was properly diagnosed and treated. So many of us are dismissed by ignorant doctors. Also, I wonder why the website showed me your three-year-old post first. Strange.