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Please help - still completely fatigued
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PhyllisBalboa Offline

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Post: #21
RE: Please help - still completely fatigued
Another possibility is the MTHFR genetic mutation. It takes a blood test, cheek swab, or spit in a tube. It turns out that my husband and I both have a double mutation on that gene, and many in the MTHFR forums have sleep apnea.

It results in the inability to 'methylate' (convert to a usable form) the B vitamins which are necessary for all body systems and especially needed for dealing with stress. Taking folic acid makes it worse (blocks any folate we're getting from food), and folic acid is added to many foods now and is in multiple vitamins. The treatment is simple: over the counter methylated B vitamins. There's lots on the internet about this mutation.

Our extreme exhaustion and stress level is what got us diagnosed, then treated for it. Still had some tiredness after 6 months of treatment, and getting diagnosed with apnea was the final piece of the puzzle. Now we're more normal than we've been in years.
10-31-2014 07:41 AM
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justMongo Offline

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Post: #22
RE: Please help - still completely fatigued
(10-31-2014 07:41 AM)PhyllisBalboa Wrote:  Another possibility is the MTHFR genetic mutation. It takes a blood test, cheek swab, or spit in a tube. It turns out that my husband and I both have a double mutation on that gene, and many in the MTHFR forums have sleep apnea.

It results in the inability to 'methylate' (convert to a usable form) the B vitamins which are necessary for all body systems and especially needed for dealing with stress. Taking folic acid makes it worse (blocks any folate we're getting from food), and folic acid is added to many foods now and is in multiple vitamins. The treatment is simple: over the counter methylated B vitamins. There's lots on the internet about this mutation.

Our extreme exhaustion and stress level is what got us diagnosed, then treated for it. Still had some tiredness after 6 months of treatment, and getting diagnosed with apnea was the final piece of the puzzle. Now we're more normal than we've been in years.

Very interesting. I need to get my stepson tested for 677TT. How did you get tested?

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
10-31-2014 08:21 AM
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marxxx Offline

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Post: #23
RE: Please help - still completely fatigued
Thanks for ideas guys.
Mongo - I am going to request a cardiac work up at my dr appt next week. I don't expect that to be root cause of the problem, but that's what the Dr's are for.


Phyllis - My B levels are good. I have actually improved several deficiencies over the course of the year. There may be more but B & D are both good.

I should probably start a separate thread for this, most of my apneas seem to occur while in REM.
10-31-2014 08:29 AM
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PhyllisBalboa Offline

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Post: #24
RE: Please help - still completely fatigued
(10-31-2014 08:21 AM)justMongo Wrote:  
(10-31-2014 07:41 AM)PhyllisBalboa Wrote:  Another possibility is the MTHFR genetic mutation. It takes a blood test, cheek swab, or spit in a tube. It turns out that my husband and I both have a double mutation on that gene, and many in the MTHFR forums have sleep apnea.

It results in the inability to 'methylate' (convert to a usable form) the B vitamins which are necessary for all body systems and especially needed for dealing with stress. Taking folic acid makes it worse (blocks any folate we're getting from food), and folic acid is added to many foods now and is in multiple vitamins. The treatment is simple: over the counter methylated B vitamins. There's lots on the internet about this mutation.

Our extreme exhaustion and stress level is what got us diagnosed, then treated for it. Still had some tiredness after 6 months of treatment, and getting diagnosed with apnea was the final piece of the puzzle. Now we're more normal than we've been in years.

Very interesting. I need to get my stepson tested for 677TT. How did you get tested?

My husband and I both have the A1298 mutation from both our parents (double mutation), while others have the C677. Our diabetic doctor wanted us to do the test, she sent the blood to a genetic testing lab. I had to pay $79 for mine, his was covered by insurance. Then I paid $99 to 23andMe for a wider genetic testing, which found the mutation as well, plus lots of others, mostly having to do with mess-ups in the detoxification system, which usually goes with the MTHFR mutation. So can't convert B vitamins to a usable form and can't detox properly. All that adds up to illness.
(This post was last modified: 10-31-2014 10:28 AM by PhyllisBalboa.)
10-31-2014 08:37 AM
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PhyllisBalboa Offline

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Post: #25
RE: Please help - still completely fatigued
(10-31-2014 08:29 AM)marxxx Wrote:  Phyllis - My B levels are good. I have actually improved several deficiencies over the course of the year. There may be more but B & D are both good.

The B levels blood test doesn't find it, although I was a bit low in B1 (thiamin). The Bs might be in your blood just fine, but can't be used because they can't be converted. Only the genetic test finds this mutation.

Some indications of possible mutation: chronic diseases, heart issues, heart murmur, miscarriages, diabetes, cancer (especially multiple myloma which is directly linked to it), fibromyalgia, mental conditions or dementia in the family, low vitamin D, thyroid problems, etc. Look for these in the family system as the mutation is inherited. And there are other indications, see the internet for more.

I have/had diabetes, fibromyalgia, low thyroid, depression, low Vit D, miscarriage, heart murmur. In the family we have dementias, cancers, brain tumors, heart attacks and strokes, multiple myloma, diabetes, autism/asperger, emotional problems, apnea and insomnia.
(This post was last modified: 10-31-2014 08:59 AM by PhyllisBalboa.)
10-31-2014 08:53 AM
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marxxx Offline

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Post: #26
RE: Please help - still completely fatigued
[/quote]

The B levels blood test doesn't find it, although I was a bit low in B1 (thiamin). The Bs might be in your blood just fine, but can't be used because they can't be converted. Only the genetic test finds this mutation.

[/quote]

Thanks for the clarification, I will talk with the doc about this next week.
10-31-2014 10:17 AM
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PhyllisBalboa Offline

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Post: #27
RE: Please help - still completely fatigued
(10-31-2014 10:17 AM)marxxx Wrote:  Thanks for the clarification, I will talk with the doc about this next week.

Many doctors still don't know about it since it's fairly new. My doctor from Phoenix (a big medical complex type state) knew because she went to a conference where it was discussed. Many naturopaths and integrative doctors know, as well as those dealing with autism and problems carrying a baby to term.

Now my doctor tests all her diabetics who have fibromyalgia, low vitamins D or B1, thyroid issues, chronic diseases, or multiple myloma in the family. She's also starting to look for sleep apnea in those with the MTHFR mutation. That's why my husband got tested, then me when I read about the symptoms. And we both have moderate complex apnea.
(This post was last modified: 10-31-2014 11:28 AM by PhyllisBalboa.)
10-31-2014 10:39 AM
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PaytonA Offline
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Post: #28
RE: Please help - still completely fatigued
(10-31-2014 07:41 AM)PhyllisBalboa Wrote:  Now we're more normal than we've been in years.

And here I thought that one had to be abnormal in order to gain entry to the apnea board. Another myth dispelled. Laugh-a-lot
10-31-2014 11:08 AM
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PhyllisBalboa Offline

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Post: #29
RE: Please help - still completely fatigued
(10-31-2014 11:08 AM)PaytonA Wrote:  
(10-31-2014 07:41 AM)PhyllisBalboa Wrote:  Now we're more normal than we've been in years.

And here I thought that one had to be abnormal in order to gain entry to the apnea board. Another myth dispelled. Laugh-a-lot

I'm sure I could come up with enough abnormalities to make you happy.

Rolleyes
10-31-2014 11:11 AM
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justMongo Offline

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Post: #30
RE: Please help - still completely fatigued
Looks like 23andMe is not doing tests right now... some problem with the FDA.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
10-31-2014 02:34 PM
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