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Is excess hair loss due to the methylation protocol?

Messages
21
Has anyone experienced this? I'm 2+ months into the methylation program and am really not sure if its doing anything positive but I am getting new symptoms, including hair loss. I'm also getting skin problems, worsening insomnia.

At first I thought it might be low potassium, but when I increase my potassium intake I get symptoms of excess potassium (nausea especially) and the hair loss /insomnia continue.

For reference I'm using the Jarrow B12, Metafolin, and stopped all folic acid supplements 2+ months ago. No whey or glutathione. I'm taking all the recommended associated supplements too. For now I'm coming off B12 & metafolin because it seems to be causing problems which didn't exist before and I cannot see that its giving me any benefits at all.

One more thing; when I first started methylation back in April I bought the Actifolate which contained folic acid (I wasn't yet aware of the folic acid problem Freddd mentions). However, 4 weeks into that version of the protocol my mood & sleep was much better. Since switching to Metafolin 2+ months ago these problems have started. Might I be one of the people who is better suited to a folic acid containing folate product?

thanks
 

richvank

Senior Member
Messages
2,732
Has anyone experienced this? I'm 2+ months into the methylation program and am really not sure if its doing anything positive but I am getting new symptoms, including hair loss. I'm also getting skin problems, worsening insomnia.

At first I thought it might be low potassium, but when I increase my potassium intake I get symptoms of excess potassium (nausea especially) and the hair loss /insomnia continue.

For reference I'm using the Jarrow B12, Metafolin, and stopped all folic acid supplements 2+ months ago. No whey or glutathione. I'm taking all the recommended associated supplements too. For now I'm coming off B12 & metafolin because it seems to be causing problems which didn't exist before and I cannot see that its giving me any benefits at all.

One more thing; when I first started methylation back in April I bought the Actifolate which contained folic acid (I wasn't yet aware of the folic acid problem Freddd mentions). However, 4 weeks into that version of the protocol my mood & sleep was much better. Since switching to Metafolin 2+ months ago these problems have started. Might I be one of the people who is better suited to a folic acid containing folate product?

thanks

Hi, bishbosh.

Actifolate also contains folinic acid. My guess is that you were benefiting from the folinic acid. I think it is helpful to most PWMEs/PWCs. As I've posted to Freddd, I suspect that he has a genetic deficiency of the one enzyme that makes folinic acid useable, i.e. MTHFS (methenyl tetrahydrofolate synthetase), which seems to be pretty rare.

Folinic acid is a buffer form of folate that can be converted to other forms. The hair loss may be due to an insufficient level of MTHF (methylene tetrahydrofolate, not the same as methenyl tetrahydrofolate). This form is normally used in the body both to make methylfolate (which you are taking as Metafolin) and thymidine, which is needed to make DNA for the production of new cells. The hair loss suggests that your body is not able to make new cells as rapidly as it needs to.

The new version of the simplified treatment approach does not contain Actifolate (in order to lower the amount of folic acid in the protocol, which Freddd and I agree on), but it does include folinic acid (which we don't agree on, but which I think is helpful to most PWME's/PWC's. You might consider adding some folinic acid.

As always, I recommend that anyone who is on a methylation protocol be working with a physician, because a small number of people have reported experiencing serious adverse effects while on this type of treatment.

Best regards,

Rich
 

aquariusgirl

Senior Member
Messages
1,732
Hi bishbosh

I slowly transitioned off the SMP a couple of months ago & I have a problem with hair loss, so Rich's explanation makes sense to me. Or at least it makes sense for my situation.

I didn't notice hair loss when I was on it.
 

anne_likes_red

Senior Member
Messages
1,103
I just want to chime in and mention that folinic acid noticibly improved my sleep.

I haven't had any problem with hair loss, but same as you bishbosh I did encounter more challenging symptoms a couple of months in. This did include what I assumed to be a type of detox reaction in my skin (lots of little bumps on my back!).

Anne.
 

aquariusgirl

Senior Member
Messages
1,732
ANNE ..have you tried the sam-e..?

That gave me great sleep.
If you take sam-e (converts serotonin to melatonin) a hefty dose of gaba (for the slow brain waves)& magnesium right before bed on an empty stomach..that's a good sleep cocktail.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
Bishbosh, you don't happen to take synthroid do you? I ask because a lot of people with CFIDS/ME also have thyroid problems. Every time they upped my synthroid dose I would loose lots of hair for about 3 months and then it would go away. I switched back to levothyroxine because I don't loose as much hair on it.
 
Messages
21
Thank you Rich for that explanation - this makes sense in terms of what I'm experiencing. I was doing better when I was taking Actifolate than I am with Metafolin, and now I have a good explanation for why that would be. I appreciate your reasons for recommending medical supervision on this protocol and I wish I could find such a physician but but they just don't exist here. It would be so nice to be able to hand over all this researching and questioning to a doctor who understood the "whys" behind every symptom.

Anne - Strangely, I'm not experiencing detox symptoms at all. I seem to have more physical stamina, but I can't be sure about that either, which seems an odd thing to say, but the brain fog is so persistent and strong that it clouds everything, including my ability to "read" my body's energy levels. Plus, the insomnia plays havoc with my energy anyway so its difficult to tell. In the early stages I had "detox" and it was unpleasant but it's cleared.

Mya, yes I'm taking levothyroxine and have been for nearly 25 years. I had a total thyroidectomy as a teen and levo was very successful for me. Its monitored regularly and I'm so familiar with how both hypo and hyper manifest in me that I really don't think its the issue at the moment. However I could be wrong and today I'm having my 6 monthly blood test so I'll find out soon enough :)

Thank you everyone; this has been really helpful.
 

aquariusgirl

Senior Member
Messages
1,732
BISHbosh, LDN might help with the brain fog. It really tamps down that neurological inflammation we all have due to viruses. Not a long term fix... more a band aid.