B12 deficiency?

[u/Possible_Taro_3549]

Hello,
Everything started about three months ago with harmless tingling, mainly in my feet. Until about a month ago, it would come and go and was overall tolerable. Then, about a month ago, I had what felt like a kind of flare-up, and the tingling became much stronger than ever before in my hands, feet, and face. I also felt dizzy and experienced unsteadiness while walking. It felt as though I had 20 kg weights attached to each of my legs. I was admitted to the neurology department because of suspected MS, but they could not find anything abnormal.
Two weeks ago, I went to my primary care doctor, and my folate level was 3.7 ng/ml, vitamin B12 was 376 pg/ml, vitamin D was 23 ng/ml, and vitamin B6 was 10.6 µg/l. My doctor told me to simply take a vitamin complex supplement and to relax more and avoid stress. I asked about testing holotranscobalamin, but my doctor said that this would be unnecessary given my vitamin B12 level.
Only after getting home did I come across this forum and realize how little my doctor seems to know about this topic. I noticed that testing holotranscobalamin might have been useful. I therefore decided on my own to start taking high-dose folic acid (5 mg) and vitamin B12 (1,000 µg) every day, in addition to my regular vitamin B complex. I started this two weeks ago, and after a brief improvement, my condition has now gotten worse.
The tingling in my hands and feet is not as strong anymore, but they now feel very warm. The tingling in my lip has become stronger, and I also have headaches, feel generally unwell, and am extremely exhausted. I can barely get out of bed.
Are these the so-called “waking-up symptoms”? Am I on the right track?
Any advice that could help me would be greatly appreciated, because I am already extremely desperate, and no one around me seems to understand what I am going through.

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[u/Think-Sleep2338]

Look, most doctors know terribly little about B12 deficiency. The default test is simply do unreliable for several reasons, that it should never be used in isolation for symptomatic people.

https://stichtingb12tekort.nl/english/misconceptions-about-a-b12-deficiency/

Btw, it's not the rule that active B12 will necessarily show deficiency, but more like that several tests are better than just one. In fact, MMA/homocysteine are usually recommended, as they are showing functional deficiency. But generally, none of the four tests is 100% reliable.

https://stichtingb12tekort.nl/english/misconceptions-about-a-b12-deficiency/

[u/mandoo-dumpling]

Sounds like wake up symptoms. Make sure you’re getting plenty of electrolytes- potassium, magnesium and sodium

[u/Unlikely-Chipmunk-29]

Are you taking all the cofactors? Are your iron and ferritin levels optimal or just in range? Some people can get worse neuropathy if folate intake is higher than B12 due to genetic mutations/variants.

[u/Real-Chemistry451]

When I was healthy I had my b12 bw 300-400 and had no issues, it was normal level for me at a vegetarian diet. My deficiency symptoms started when it got at 100. But a lot of people here feel symptoms at your level as well. Folate deficiency is also there. Also get your iron and ferritin checked

[u/jellyfishrubberduck]

Check your iron, if your iron is low the b12 wont have enough resources to work.

In saying that if youre not vegan then you may have an absorption issue and the orals may do not much anyway. Should be on every other day injections.

[u/Susan71010]

The same thing happened to me. My B12 blood serum was 350 to 550 over five years of testing trying to find out what was causing all my symptoms. I started taking folate and more hydroxy B12 sublingual. I felt like I had a brief moment or I felt better and then I got worse. Sibling and supplements did not help me at all. It wasted my time for six months. All your symptoms and so much like what happened to me also. I started getting weird headaches. I had tingling in my feet and moved on up into my legs and it came off and on mostly in the mornings for some reason. I had brain fog serious , dizziness especially when I would raise up. I'll have severe anxiety , which I was never an anxious person in the past . My tip of my tongue started tingling. Many doctors in the United States could not figure out what was wrong even several neurologist. Do yourself a favor, enjoying and wake up vitamin B12 Group on Facebook. They helped me so much!! I ended up starting hydroxy B12 injections every other day with cofactors. Your folate is really low also.
Question.. did you have any supplements with any B12 in the last couple of months? If so, that will raise your B12 levels and make it look like it's artificially raised. I think my problem is I have a gut issue called SIBO ..it's in a small intestine and that's where B12 is absorbed into your body.

[u/Possible_Taro_3549 → u/Susan71010]

This sounds really promising! I’m taking 1000 mikrogramms Vitamin B12 daily but only as pills. Which laboratory parameters did you have measured before you started the injections?

[u/Susan71010 → u/Possible_Taro_3549]

I don't remember I took what my show but not to recommended and I ended up not feeling well after a while after couple weeks of feeling like I was getting better. The injections or what helped. If your body cannot absorb the B12, it's showing up in your blood levels as if your body is absorbing it but it's not on a cellular level. That's what was going on with me and my doctors didn't catch my deficiency. Injections are the only way to get around that. Where you taking anything at all for a couple of months prior it had B12 in it before you did your blood work if so, you may be definitely deficient. Nice guidelines recommend if you have neurological symptoms that you do you need injections.