I’m hoping someone can help me. I’m 27 and I have been battling many symptoms since I was about 18 years old. Most of my symptoms have been psychiatric (OCD, anxiety, phobia) but I have also had unexplainable skin rashes on my knuckles and elbows that spontaneously happen, a fainting episode, constipation, fatigue, insomnia, pale skin, hair loss, recently diagnosed with osteoporosis, and in the past year my fingers and toes tingle/ feel cold.
When I was 18 and the symptoms started, my doctor had blood drawn, and my b12 was <100. She prescribed a cyanocobalamin shot every week for about a month or two, but I didn’t notice any improvement. She never repeated the b12 levels, but a year later she drew a homocysteine level and an Methylmalonic Acid level—both were high (homocysteine: 16.7 and MMA:681). The Intrinsic Factor Blocking Antibody was also negative. No shots, no supplements; instead, I was referred to a psychiatrist and thus began the long journey of antidepressants, therapies, etc. that have never improved my symptoms. On my own I started taking a b12 vitamin sporadically throughout the years, but I wasn’t very consistent.
After reading Could It Be B12? By Sally Pacholok and Jeffrey J. Stuart, I thought maybe B12 deficiency could be something we overlooked. A lot of the symptoms match up, and I will note that I do not eat any meat. I do eat dairy though.
Here’s the problem: a few months ago I had lab work done again and my homocystine and MMA levels were normal (<1 homocystine; 110 MMA) and my b12 was high (1136). My folate was >24.0. At the time of the blood work I was taking many supplements my Chiropractor encouraged me to take including 15mg 5-MTHF, 9mcg B12 , 40mg Zinc chelate, 400mg Magnesium glycinate, Protefood (Amino acid supplement by Standard Process), Manganese, and Inositol, and a multivitamin called Catalyn (also by Standard Process). I told my doctor about the supplements, but she said they wouldn’t affect the test. This seemed odd to me, but I didn’t argue.
I know it’s easy to dismiss the symptoms as “just” anxiety/depression, but I know my nutrition has never been good so I just thought I’d research a little more. Any help would be a blessing. Thank you. (sorry for long post)
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WishingWell1
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Sounds like you are able to absorb from an oral supplement . You need to be consistent in taking it to see any benefits.
Try and get your diet sorted to Include a good mixture of essential nutrients.
Have iron, ferritin, thyroid ,a nutritional screen. Folate.bloods done.
Get referrals from gp to get any Investigations to rule out things .
Celiac everything you csn.
Your symptoms di overlap with so many conditions.
My daughter now 29 has health problems that took years to diagnose.
The root of most was b12 deficiency but not caused by diet.
Effects are the same though.
Can affect your spine .
Autonomic system
Mental health
B12 is needed everywhere in the body.
It also happens over time.
Recovery can be slow.
So getting all your nutrition right a very good start and treating symptoms.
Alsi having as many investigations as possible.
Keep a log. I hope you can decipher whars going on and get the correct treatment.
Discuss anything that isnt working for you with your doctor so you csn cone off it . Trial and error at times with Gp and treatments
T c
Ps your folate levels are good. The maintenance doses is 400mcg folic acid. .daily . Look up taking high doses of folic acid for too long. High doses are only fir short periods until level is up.
Your doctor is useless if she thinks that taking 40x the recommended dose of folate and 3x the recommended dose of B12 will not affect the test results!
It's obvious that your earlier low B12 was caused by a lack of B122 in your diet (dairy foods do contain some B12, but not enough). The fact that a fairly low dose B12 supplement has raised your levels so high shows you do not have an absorption problem.
Throw away the high-dose folate, and swap them for 400 mcg. Keep taking the B12. Go see a real doctor to find out if you really do need the other stuff you've been advised to spend a load of money on. Quite likely none of it is doing anything.
Hi not going to offer advice on the b12 but will just mention that both my digestive and mental health problems did not improve on b12 until I started to treat my microbiome with homemade kefir - after 25 odd years of terrible digestion and later, horrible anxiety it was an absolute game changer. You can pick up grains for the price of postage on Facebook page uk-fermenting-friends and lots of how to videos on you tube. I only wish someone had told me about it sooner.
Hello, I am really struggling to feel better. Lots of issues bothering me, both physically and mentally. You make it sound so easy. I am willing to try the kefir. I bought grains about a year ago and was making it, then stopped using it because I am lactose intolerant. I do not get the pain that many do with consuming milk products, I just get terrible basketball size abdominal region bloating after eating or drinking anything. Do you know if lactose intolerant PA sufferers can consume kefir?
Scientist, not medic, so I can't offer clinical advice.
However...
You were B12 deficient, [non-meat-eaters often are] but you appear to be able to absorb B12 from oral supplements. Carry on. The injections would have helped you, because severely low B12 has all sorts of risks adn they will have reduced those risks short-term. Taking folate when B12 deficient is unwise, although once you have some B12 stores the risk is less. Unless you have a severe problem in dietary terms, then you don't need much folate supplement, if any. Take the B12 and do it religiously.
A dietitian would be very helpful too. You will not be fobbed-off; they're highly trained, qualified and there to help. An HCPC-registered dietitian is a professional, and they work in hospitals. Your GP would be able to refer you to them. They won't try to sell you anything! Good luck.
Hiya OK glad you're going to try the milk kefir and good news on that front. For the first 2 years of taking it, I made mine with coconut milk. It has to be one with no stabilisers or additives of any kind otherwise it kills the grains. Most use this one (can be bought in smaller quantities to try it out, but this offers best value, enough for around 3 months daily) amazon.co.uk/dp/B07Z9LL4T5/...
Feel free to contact me for more advice. The grains will survive in this milk and make great kefir, but they won't multiply the way they would in dairy. I chose non dairy as I was lactose intolerant and also had huge ethical concerns about the dairy industry. However my partner started getting milk from Prince Charles Estate near to where we live, which has better welfare standard and the probiotic intake from the coconut kefir had cured my lactose intolerance, so gradually I have moved over to dairy kefir.
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Tests needed for daughter already supplementing with injectable b12
Provider “B”-ware: Using Methylmalonic Acid Levels to Diagnose B12-deficiency Neuropathy 
Results MMA & Homocysteine
Advice on testing for B12
Testing coming up
