Surprise surprise it's me again

[Popcorn12345]

I'm having lots of anxiety and light headedness. Do you think this is because

1. I'm reversing out

Or

2. Having a reaction to the methylfolate?

Thank you!

[Nackapan]

Stop the methyfolate perhaps to see?

[Popcorn12345 in reply to Nackapan]

What's the best alternative? I was told to take 400mcg methylfolate. I need to take it as my levels aren't yet high enough although rising.

Is folonic better than folic acid?

[Nackapan in reply to Popcorn12345]

You stated you may be reacting to it .Thr only way yto know is to stop for a period of time .

There are plenty of rich folate foods.

I just took 400mcg folic acid then had to reduce as levels rose quickly to above range .

I initially was prescribed a high dose of I think methyfolate mixed with iron.

I lasted a day as made me feel so ill so stopped it.

[MindfulSquirrel in reply to Popcorn12345]

I get on much better with folinic acid compared to both folic acid and anything more than 100mcg methylfolate, fwiw. 🙂

[Popcorn12345 in reply to MindfulSquirrel]

Where did you get folonic acid?

[MindfulSquirrel in reply to Popcorn12345]

Online, there’s one called megafolinic which comes in 800mcg tablets.

[Popcorn12345]

Is 400mcg of folic acid the same equivalant to 400mcg methyfolate?

[Nackapan in reply to Popcorn12345]

Think so 🤔

[Technoid in reply to Nackapan]

When comparing both at 400mcg, methylfolate seems to be slightly more bioavailable according to EFSA:

efsa.europa.eu/en/efsajourn...

400mcg Folic Acid would be 680mcg DFE (Dietary Folate Equivalent) (factor of 1.7)

400mcg Methylfolate would be 800mcg DFE (Dietary Folate Equivalent (factor of 2)

See also NIH : ods.od.nih.gov/factsheets/F...

[Popcorn12345]

If you need to use folate for b12 injections why did you stop? How do you know if you are taking to much

[Nackapan in reply to Popcorn12345]

You only need to supplement if deficient. I go by blood tests ..

On 400mcg of folic acid daily my level went up from 3 to above measurable level of 26

In 3 months

You can't overdose from food .

We are all different .

My daughter needs at least 400mcg folic acid daily and eats far more folate rich foods than me .

I need far more b12 Injections than her .

So in theory i need more folate ???

But don't?

[Chickens44]

I am now taking methylfolate within a b complex and I am finding I am getting mild anxiety back again, so wondered whether it was that too. I have been told it can have that affect on some people. Luckily my folate level is better so I think I may avoid it for a week or two. What B12 are you having and how long have you been on it?

[Popcorn12345 in reply to Chickens44]

I've had 2 injections so far. I think they are hydroxcocobalin. Should I just switch to a basic folic acid?

[Chickens44 in reply to Popcorn12345]

Not sure, I started with folic acid, then switched to methfylfolate after a couple of weeks as I was getting a bit of loose bowel. So went back to Methylfolate. I did a folate test and my levels had risen so I don’t think I need it as much now. All I would say is try folic for a couple of weeks if the anxiety goes and the folic doesn’t upset your system, then continue with that. It’s all a bit of trial and error sometimes. I am 9 weeks into B12 injections, so I still feel it is early days for me too.

[Popcorn12345 in reply to Chickens44]

I see you felt worse after you first injections? How's it going now?

[Chickens44 in reply to Popcorn12345]

I’m actually feeling a bit better, still got lots of symptoms, but they are not as intense. And the chronic fatigue has lessened. So hoping I’m through the worst. But I’m not counting my chickens just yet! 🐓🐓😊

[Popcorn12345 in reply to Chickens44]

Can you describe the chronic fatigue?I feel like I have pressure in my head and eyes abd my eyes are so heavy. Tension and feel sick.

Does that sound the same?

Do you have any other deficiency and do you know the cause of yours?

[Chickens44 in reply to Popcorn12345]

Just popping out. Will reply later 😊

[Chickens44 in reply to Popcorn12345]

The fatigue is sometimes unexplainable. Just feel like the plug has been pulled and there’s no energy. I call it brain fog, it’s not exactly a headache, but just my head feels too heavy for my body and feels like it’s going to explode. I did have a lot of bloating and nausea, and sometimes even retched. But the nausea is a lot better, still get the bloating though.

I had low iron, low B12, folate and vitamin D. I saw Dr Klein in Cambridge at the end of May and I had an iron infusion and he started me on the B12 injections. I have a vit D spray at the moment. I’m due to have my levels checked in a couple of weeks to see if they have improved. My problem I think is malabsorption, partly due to taking a PPI for too many years. Also I think stress didn’t help.

[Popcorn12345 in reply to Chickens44]

How many injections did he start you on? Yes that fatigue sounds similar.

I have a lot of weakness in my legs

[Chickens44 in reply to Popcorn12345]

He advised every other day for at least 12 months. He thinks I haven’t had fibromyalgia for 20 years, and that it was always B12 deficiency, which is why he thinks it may take that long to see the most improvement.

[Popcorn12345 in reply to Chickens44]

I'm so sorry to hear that. I hope you recover soon! I don't understand why he only has me on twice weekly

[Chickens44 in reply to Popcorn12345]

I think a lot depends on how long you’ve been suffering, age, weight, and what your levels were. So many variables. 🙂

[Popcorn12345 in reply to Chickens44]

Thank you

[Nackapan in reply to Popcorn12345]

I did

[Treesong2023]

Hiya

We dont know how long you have been on your meds "mix" ..or how long you have had these symptoms. But here are a few thoughts... Firstly..I believe the general rule is B12 first, folate later...and keep the folate dose low..? Its advice that i follow.

Secondly, I am glad you have a sound helpful B12 def treatment in place...Next, your two current symptoms. Your anxiety could just be = your ongoing background anxiety? ...from dealing with the stress of your illness..from thinking about the methyl effect? Few treatments work over night... I know I can easily generate tons of anxiety ! Its like a negative superpower!

So, maybe try some calming actions here first?.. short walks, keeping busy, read a bit, listen to music or an audiobook, maybe talk to friends ( but maybe not about your illness tho? ) I would be tempted to wait to see if it persists...before making any changes as you wont be able to track your response so well over time...?

The lightheadedness ..can i ask you to think about that feeling a little more ... do you actually a feel dizzy? wobbly? Or, is the feeling like a headache lifting, and feeling less tired..( as I had).

...So, this feeling could be from things getting a bit better?...of things beginning to work? as you get more energy? as the fog lifts.. ? Maybe give the current treatments a little time to work for you.?

[Popcorn12345]

Dr K only has me doing injection 2 times a week which I'm worried about because most people do more. I'm putting all Mt faith in him that he knows what he is doing

[Treesong2023 in reply to Popcorn12345]

If you have been on twice a week for 9 weeks, that 18mg which is a decent level I believe.

The NICE normal (none Neurological symptoms) loading is 3mg per week x 4 (total loading = 12mg in the month) - then they go to 2/3 monthly. You can also supplement with the very effective sublingal sprays ( Better You) to load up more with no health risk.

I think you need to give things a bit of time maybe?

[Popcorn12345 in reply to Treesong2023]

I definatky do. I'm just trying to get my head round it all

[Treesong2023 in reply to Popcorn12345]

Yes, thats the hard part sometimes, theres so much to consider...then theres the balance of valid concern, hopes, anxiousness and fear... But you are on a good course it seems...and I hope you feel better over time...and that your symptoms lessen...

I wish you well

[Technoid in reply to Popcorn12345]

Bear in mind that twice weekly is the standard treatment regime for treating severe B12 deficiency with neurological symptoms in the Netherlands. Centres of B12 treatment expertise there such as the B12 Institute and B12 Kliniek both follow such a protocol, generally with good results for many patients. Experts from these institutions have presented at the PASOC conferences, sometimes on several occasions.

It seems like you are just a week into self-injecting. This is extremely early days in the treatment of a significant deficiency.

[Popcorn12345 in reply to Technoid]

Thank you. Just done my 3rd injection

[Treesong2023 in reply to Popcorn12345]

I misread and see you are only 3 weeks in not 9 - that was chickens44 - so you are very early days indeed

[Popcorn12345 in reply to Treesong2023]

I started injections last friday

[Treesong2023 in reply to Popcorn12345]

Okay, then take a deep breath, ..you are on a good B12 course..you need not fear..no further damage do9ne while on B12 SI.....eat well, walk well, keep busy...dont let your mind work against you ( it happens to us all) ...be brave, and let your body do its thing... xx

[Popcorn12345 in reply to Treesong2023]

Thank you. You are very kind. It's just scary because recently I've been struggling to walk due to weakness in the legs. That's scary

[Treesong2023 in reply to Popcorn12345]

🤗🤗🤗🤗....our bodies are wonderful mechanisms... xx

[Nackapan in reply to Popcorn12345]

It is scary .I couldnt walk.

Balance off

Vertigo

Vestibular and visual problems.

It does get better .

Look up Cawthorne exercises to help you walk