Newbie questions, help please Freddd/anyone?

[daisychain]

Hi there,

I'm very glad I found this forum, as you all seem so knowledgeable. I'm 22 years old, have been struggling along with sub-par energy levels and general poor health since my teens, and have been looking for a solution ever since. I've tried things like the candida diet, detoxing, cutting out gluten, and most recently dessicated thyroid, which only made me feel 10x worse. I recently learnt about the MTHFR mutation, and without being tested (or sufficiently informed!) I plunged into a protocol which involved taking sublingual methyl-b12 and folinic acid, alongside vits A,C,D, chromium, zinc & magnesium oil. My first reaction to the methyl-b12 was anger outbursts, acne outbreaks & general emotional instability, so I cut down to taking 1000mcg every other day. A couple of weeks after that settled down, I started taking folinic acid, thinking it was as good as taking methylfolate (I now know better). After a week or 2 on the B12 + folinic, I started experiencing restless leg syndrome (something I've never had in my life, and which I now know from Freddd is linked to potassium deficiency), severe depression & suicidal thoughts, irritability, extreme fatigue, and poor skin/nail health. As I said, until finding this forum I had no idea about the danger of potassium deficiency nor the consequences of taking folic/folinic acid. My questions are......

1) does my reaction to these supplements mean that they are working for me, thus I have some kind of MTHFR mutation?

2) if so, will I have to take b12 & methylfolate all my life?

3) could someone please explain methylation/methyl donors? I am confused by the whole process really.

4) here in the UK, I can only get one brand of adenosylb12, which has added folic acid. Does the positive effect of the b12 negate the potential harm of taking folic acid? Would taking methylfolate at the same time be a wise idea, or does folic acid have an advantage when the 2 are taken simultaneously?

It may seem a bit hasty, beginning a protocol like this without knowing much about why it might work or the mechanisms behind it, but it just seemed right to try it and I didn't see any harm in doing so. I have seen some improvements as well - like better energy, feeling more sociable, just greater wellbeing all round (especially now I've started to correct the potassium deficiency). I'd appreciate it if people more experienced than I could comment and answer my questions. Thank you! :Retro smile:

 

[richvank]

Hi, daisychain.

You might find this video or the slides (click on the blue print below the video) helpful in getting information about methylation:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Your reaction to the supplements does suggest that you have a partial methylation cycle block. Can't tell from this whether you have MTHFR polymorphisms.

Assuming the partial block is lifted by treatment, my opinion is that small maintenance doses of B12, methylfolate, and perhaps NAC would help to prevent a relapse.

It's probably best to take the methylfolate at least 2 hours separated from the folic acid. The methylfolate is likely to be better absorbed by the gut if you do that, because they compete for the same transporters. They will also compete for getting from the blood into the cells, but hopefully enough methylfolate will get in. Also, it's possible that your cells are able to convert folic acid to useful folate forms readily. Not everyone has trouble with folic acid.

I'm glad to hear that you have experienced some benefits from methylation treatment. That's encouraging!

Best regards,

Rich

 

[nanonug]

I'm 22 years old, have been struggling along with sub-par energy levels and general poor health since my teens, and have been looking for a solution ever since.

Would you mind elaborating on the health issues you have? Sub-par energy levels, whether physical or mental, usually have some kind of trigger behind them. Knowing more of the symptoms associated with your health issues will basically provide us with more pieces of the puzzle.

 

[daisychain]

Thanks for your thorough reply, Rich! What is NAC? It is encouraging that I'm having results from this. I haven't ever felt properly well and I'm hoping I've finally uncovered the reason why.

Hi Nanonug, I'm lucky that I've never had ME/CFS to the debilitating degree that some have - i.e., bedridden - fortunately I've been able to study and work. I've just never had much energy for life; I feel fatigued to varying degrees pretty much constantly, am severely gluten intolerant (avoid it completely now), have brain fog which affects my socialising and completion of daily tasks, and have symptoms of adrenal/thyroid issues like dark undereye circles, inability to lose weight, poor tolerance for nutritional/environmental stress, and hypersensitivity to pretty much everything (foods, stimulating environments, loud noises, etc.) Hope this is enough info.

 

[nanonug]

I [...] am severely gluten intolerant

Have you been formally diagnosed with celiac disease? Sometimes what appears to be celiac disease is just an indication of a deeper problem such as leaky gut syndrome.

have symptoms of adrenal/thyroid issues like dark undereye circles, inability to lose weight, poor tolerance for nutritional/environmental stress, and hypersensitivity to pretty much everything (foods, stimulating environments, loud noises, etc.)

Have you had your adrenal and thyroid functions tested? If yes, what were the quantitative results? Dark circles under the eyes suggest some form of vitamin or iron deficiency. It could also be associated with MTHFR mutations. Do you bruise easily?

At this point, and based on the limited info available, I think you should avoid folic or folinic acids at all costs and supplement not just with a single vitamin but with a good multivitamin containing both methylcobalamin and methylfolate (adenosyl-b12 is probably unnecessary). Something like Thorne Basic Nutrients III or Pure Encapsulations Multi t/d. You also need to get tested for MTHFR mutations, and adrenal and thyroid functions in case you haven't already.

 

[daisychain]

No, not been diagnosed w/celiac. I had a blood test once, but the doctor didn't tell me that you're supposed to load up on gluten-containing foods in the weeks before the test - I was already avoiding gluten by this point. I don't want to make myself ill by eating gluten, just to have a formal diagnosis...

I had my TSH checked a few years ago and was at the low end of normal, but I know those tests are incomplete and it's more to do with T3 levels. I really thought the dessicated thyroid would help my energy levels but instead I crashed and felt like crying all the time, which perhaps suggests that my adrenals need support more than thyroid. Doctors who know about these things are very hard to come by here in the UK - I've avoided seeing doctors for years. I can't get those multivitamins in the UK either, at least not cheaply - they cost upwards of 40 ($70?) I've ordered a B-complex without folic acid, and methylfolate in 800mcg tablets. I'm spending so much on supplements! Good to know I might not need the adenosylb12.

Oh btw, I did go through a phase of bruising very easily, a couple of months ago. That seems to have stopped now. I do have pale gums/inner eyelids suggesting low iron. Or could that be low b12?

 

[nanonug]

I had my TSH checked a few years ago and was at the low end of normal, but I know those tests are incomplete and it's more to do with T3 levels.

A low TSH suggests your thyroid is fine. However, it would probably be wise to do a full thyroid panel. In particular, you want to know free T3 and reverse T3.

I really thought the dessicated thyroid would help my energy levels but instead I crashed and felt like crying all the time, which perhaps suggests that my adrenals need support more than thyroid.

You really don't want to mess around with thyroid hormones unless there is some kind of deficiency.

Do you know what your morning cortisol levels are? In my case, for example, supporting the adrenals did nothing for me. Eliminating chronic infections in my gut did the trick, though.

Doctors who know about these things are very hard to come by here in the UK - I've avoided seeing doctors for years.

Well, you still need to see doctors to have tests done, right? So use them in that fashion.

I'm spending so much on supplements!

Welcome to the club!

Oh btw, I did go through a phase of bruising very easily, a couple of months ago. That seems to have stopped now. I do have pale gums/inner eyelids suggesting low iron. Or could that be low b12?

It could be either or both. It could also be related to MTHFR mutations.

You really need to get yourself tested!

 

[Lynn_M]

Daisychain,

If you did genetic testing through 23andMe.com, you could find out if you had the most common celiac genes, although they don't test for non-celiac gluten sensitivity genes. With the same test, you could also find out if you had the C667T or A1298C MTHFR variants, as well as information about another million or so genes. The cost isn't bad, $99 for the test, plus a minimum subscription of 12 months for $9/month, plus overnight shipping to the US. The test is available internationally. If you can't convince your doctor to order tests, this seems like a good option.

 

[daisychain]

Thanks for your advice guys - I've had my main questions answered. I'm actually feeling a lot more clear-minded and have more energy since starting a different kind of methylb12 (Jarrow instead of Solgar - the Jarrow ones take longer to dissolve which probably makes the b12 more absorbable), dropping folinic acid, and just starting methylfolate as of today. Also, increasing potassium has done wonders. I think getting properly tested is the next thing I'll look into. Thanks again!

 

[place]

What does MTHFR have to do with all of this? I have fertility issues and got tested for this and was positive for two of them I think...

Thanks,
Kim

 

[nanonug]

What does MTHFR have to do with all of this? I have fertility issues and got tested for this and was positive for two of them I think...

If you have MTHFR mutations, it means folic acid is poison for you. So avoid it at all cost. Instead, take a good multivitamin with methylfolate, such as Thorne Basic Nutrients III or Pure Encapsulations Multi t/d.

Meanwhile, here is a website with a list of problems potentially caused by MTHFR mutations (I have not vetted it's accuracy, though): http://www.mthfrsupport.com/

 

[Valentijn]

If you have MTHFR mutations, it means folic acid is poison for you. So avoid it at all cost.

Most processed grains (breads, cereals) in some countries are fortified with folic acid, so you may need to read labels to make sure you avoid it. If you can't convert folic acid into folate, folic acid can be harmful by blocking out folate.