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New member:advice please re snps,methylation protocol,supplements

Messages
19
Location
Bath, England
hi, critterina suggested i start a new post for myself. so here goes...

i have been reading alot of posts on this fantastic forum and trying to learn !! many of you are so knowledgable it is incredible and i am hoping i will be able to learn more from this post of mine. i have been nervous to write here!

i was going very slowly (titrating) on the dr rich protocol from c. mid july 2013 but could not add in methyl b12 nor 5mthr without getting very fatigued and down. i stopped those and stayed on 1/8th tab dibenzicode, 1000mcg perque hydroxy b12 and 200mcg megafolinic but the fatigue stayed and blues on and off came back. so i stopped all of those from this weekend and don't know what to do!! i am hypothyroid(dxed by dr peatfield over here in UK early 2009) and was dxed chronic fatigue about 6.5 years ago, a year after getting MRSE and septicaemia in 2006 (i was on rifampicin for 3months at home after the one month hospital stay). i feel i am 70-80% there in terms of health ....last year i felt i was 50-60% there. but very inconsistent still...and mood has been affected in the last 6 weeks or so (ie since methylation protocol) and i cannot seem to tolerate 5htp (not even a small amount without getting really dissociative and depressed). but i know once i got ill with the mrse and septicaemia that they had to give my child doses of medicines (i was in my early 40s at the time) and also for anaesthesia. my snps show that i have issues tolerating certain medicines.

i turned to 23andme several months ago to see if that would give me further insight on my journey to full health as i felt i was stuck on 70%/80% and inconsistent in terms of energy. been trying to read alot but difficult as brain fog/ADD type symptoms came back while doing this methylation protocol! but snps are difficult to interpret and the interplay between them is obviously so individual. i feel lost!!

i have attached my mthfr support report plus the genetic genie results based on my 23andme results (i do want to say that the livewello report came back with 2 major differences: my HLA rs2155219 was homoz on the livewello but normal on the mthfr support and MAO A R297R was normal on the livewello but homoz on the mthfrsupport (and the genetic genie).

i believe i have a betacarotene conversion issue - hetero for 2 BCMO snps- and i have noticed my eyesight is more blurry in the last few months (really bad to be honest- i do wear glasses and worry that my new px since early june is too strong so i try not to wear them too much now - but i used to be able to read texts on my phone/small print if i held it at arms length before but in the last 6 weeks or so it is all blurry....i have to consciously practice letting that go coz it was freaking me out alot!! since the 23andme results i have bought a dry form of vit a which i take a few times a week. i know it is best not to go overboard with vit a and best to be balanced with vit d - it has been sunny here in the uk over the summer so have been sitting out 20/30 mins most days for vit d but my levels when last tested at end 2012 were pretty good at 70 - i had been taking 2400 of vit d a few times a week last year. i do not supp vit d for several months now).

i also think the snps (NOS) show i have issues with fats - omega 3? i do support my liver with a lemon juice and celtic sea salt drink in the morning and later in the day. i also take artichoke extract drops for liver support.

what should i be doing to be able to tolerate the b12 and the folinic /5mthr i am comt +/- and vdr taq+/+?? do i need a small amount of lithium orotate?? per yasko i should be taking the 3 b12s with just a small bit of methyl b12. i have been on this methylation protocol about 2 months. prior to that i was cutting back oxalates as my snps suggest i had issues with oxalates (i also ate a very high oxalate diet for the last several years..) as per the yahoo group (low oxalate group). i had major dumping issues (itching, rashes, stomach issues) once i dropped my spinach and almonds....but am a lot better in terms of dumping in the last few weeks.

supplements i am taking:
i am on c.1.25grains of thyroid (thai thiroyd) a day taken in the morning,
1.5ml of ldn per night (that really helped my hashis when i started that in jan 2013) - i take one night a week
1x thorne minerals
1 x holistic health neurological health formula
600mg mag cit
250mg liposomal vit c
1 x drop of 5%lugols
100mg selenium.
and up to 4 days ago on some b12 and source naturals megafolinic.
i am on 1/8th tsp progesterone cream per night (i am nearly 50 and perimenopausal).i am trying to increase this as i am now getting my period often but i cannot use much in the day as it causes me to be sleepy. in the past i cannot tolerate oestrogen supplementation - even smidges of otc oestrogen creams cause bloating/oedema even when i have shown very low in blood tests/saliva tests and when i had stopped my periods for 5 months this year and had low oestrogen symptoms. my basal temps are pretty normal for a while now (36.6/7 c 97.8 - 98.2f as are my daytime temps (get to 37ish c, 98.6 - 98.8f by mid afternoon)
250 mg of lipolife liposomal vit c
1x now super enzymes taken with main meal of the day.

supplements i have tried/taking but stopped:
i was taking half a tab of twin labs trans resveratrol max drops (1/4 of the recommended dose)- stopped that too while i rethink my supplement approach!
i was taking NADH 5mg sublingual in the mornings first thing for 2 months but again stopped recently.
i was also taking 1/4 teaspoon of the sunflower lecithin granules (which is equivalent to about 1/3 of the 1200mg sunflower lecithin soft gel) but again stopped recently.
i have tried time release 5htp (50mg)to help with the mood swings and got very fatigued and depressed from this...
i can only take 1/4 of the pharma gaba lozenge and only in the morning (if i take in the afternoon it affects my sleep - makes me alert until late) and when i tried 1/2 lozenge i got very depressed and very blah...couldn't get off the sofa...

i am hoping for some guidance in terms of what to take and how to add in. in the fridge i do have NADH lozenges, d ribose, dry form of vit e succinate, biocare b plex, fermented cod liver oil, dry form of vit a, VLR 3 probiotic, pharmaGaba, natrol time release 5htp.- just not taking them. i basically follow paul jaminet's perfect health diet (paleo with safe starches) for the last few years but keep to about 50% fat, 30% carbs, 20% protein now. i am not great on too much protein i think....i am more satiated on more fat...am gluten free, drink raw milk and make and drink my own raw milk kefir.

today is the fourth day off the b12s and the folinic and i feel good.not a lot of energy but ok to do a short weights session this morning. i had been suffering from really bad bloating for several weeks and weight gain(clothes very tight/unable to wear some). but i am def not bloated anymore since dropping the b12s and folinic. and not anxious by the end of the day and the cold extremities have gone (these symptoms came on in the last couple of months)...i don't weigh myself but feel slightly lighter.

i am trying to incorporate a 20 min weight session a couple times a week with self myofascial release which helps me a lot. i feel mentally ok good today (no depression, calm) and no fatigue. i think the perimenopausal stuff doesn't help - last night my period started (only a 14 day cycle this time, before thatt it was 22 days, prior to that it was 40 days and before that it was 5 months!) so maybe that is why i got very depressed yesterday....

sorry for this very long post but i don't know what would be relevant! given my snps, and my supplements. plus symptoms

thank you!
 

Attachments

  • C_Cronin -MthfrSupportReport.pdf
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  • geneticgenie methylation results .pdf
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Crux

Senior Member
Messages
1,441
Location
USA
Hi rawcreamqueen;

I'm still very new to analyzing snps, and I also see that some studies are conflicting. ( discrepancies in risk alleles)

It looks to me that there is more trouble with B12 absorption and transport. ( FUT2 and TCN1,MTRR)

B12 supplementation strongly affects thyroid function, and many people have had to reduce their thyroid dosage after beginning B12.

Some people with B12 deficiency will have excess folate, at first, so folate may cause negative symptoms. (pain)

I'm only guessing at this, especially since you feel better without the supps.
 
Messages
19
Location
Bath, England
Hi Crux,
thanks for picking that out for me - the FUT2, TCN1 plus the MTRR. I have been busy reading Dr Yasko and Dr Rich Van K's stuff again and even the Yasko long book.....i will look up FUT2 etc...i always loved puzzles as a child and one of the reasons i refused to just accept the ME/CFS dx years ago as i thought there must be something I can do to get my life back and started to research in between the brain fog weeks! but all this is more like a 3d puzzle x 100!

Funnily enough since the protocol i have been able to increase my thyroid dosage (long story to my thyroid med history but was dx'ed low adrenals via saliva test and practically non existent free t3 by Dr Peatfield - mainstream GPs etc had me down as ME/CFS so there was nothing to do to help me....i had a great year after seeing Dr P on NDT and Nutri Adrenal extra but not alot of change to diet/stress coping/lifestyle etc and crashed badly - 3months bedbound at end 2010. ended up on t3 only meds and HC for about 14 months. discovered meditation while ill and better diet/stress coping habits (nothing is ever a disaster!!) then weaned off the hc and florinef and then switched from t3 to ndt again last autumn and my free t4 and free t3 bloods show i am definitely converting fine and good levels. however i found i could not tolerate that much ndt - affecting sleep, lower temps, more achy. i found i was very sensitive to even an 1/8th grain increase or decrease of ndt and stayed at 1 grain for a few months but for now am on 1.25grains of ndt and body temps have a normal rise and fall and no aches...maybe eventually i will be able to cut the thyroid meds.

the depression, a slight fatigue and slow brain came back from mid pm yesterday...a few hours after i took my neurological health formula tablet. not badly but a heaviness for sure and easily stressed .....but maybe i should be grateful i am a responder to all this...and this is part of my detox...i am planning to restart the protocol and take it slow. i had major depression, fatigue, pain, brain fog before meeting dr peatfield and when i crashed again for 3 months in 2010. i am really grateful that although i have some of those again it is nothing like back then...HealthyCat replied to my original post about my 'issues' in another thread with some good leads/advice so am trying to educate myself and figure out my path in all this as i am basically self treating with the help of some kind souls out there like yourself. I am broke after 7.5 years of ill health with demands of growing children etc but funnily enough really grateful everyday to be alive (unlike before i was ill...i don't think i realised i was alive!!! if you know what i mean!!)

thanks for your input.
 

UM MAN

Senior Member
Messages
106
Location
Florida
T3 messed up my sleep patterns for years.
Have you measured you D3 levels? Raising my D3 level from 30 up to 70 (range 30-100) helped my sleep.
Have you considered supporting the CBS snp with TMG and Molybdenum?
 
Messages
19
Location
Bath, England
hi um man,

yes..t3...now i realised it caused major stress in my body hence the need for hc...but we live and learn and i was scared of ndt after relapsing so badly (but my iron was very low and my cortisol had tanked again....stuff i learnt after the fact..)...and i think only very few of us hypoT types actually need T3 only therapy. i used the circadian t3 method to wean off the hc etc and once i was off the hc i dropped the amount of T3 i was on by over 60%. and then i decided to try NDT again and still ecstatic to be off the t3 etc. i did think that once i was off that and hc i would be well in about a year...ie by about now!! all this stuff is like peeling off layers of an onion...but onwards and upwards (well...progression is never linear....as i lie in bed today feeling very lethargic..have to get up... as my eldest needs to shop for university..(her freshers week starts in 10 days).

my d3 levels are good - well, when i last checked....it was 70 and then i maintained a few times a week. and this summer i have definitely enjoyed my half an hour /hour in the sunshine when it is out. my sleep is pretty good for a while now. not waking up in the night. sometimes i find i am a bit stimulated until midnight....i do wear amber glasses to read at night!

i do take molyb - around 75mcg a day. i am taking about 30 mg of zinc a day. i had a copper iud removed this feb and my body went nuts for quite a while....it was horrid. major anxiety, insomnia, night sweats etc . hence i thought i would add in some zinc and molyb. there is a small amount of TMG in the neuro health formula tab i take - i only take one a day (today i added in an extra 1/4 tab to see how i go) so i get about 8mg of TMG.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Let me jump in and ask you folks a question: how much supplemental D3 does it take for you to maintain levels in the 70? I have to take 10,000 IU to keep it there, and that seems like a lot. Just looking for a point of comparison. Thanks!
 
Messages
27
Location
Davenport, Iowa
I find I have to take 1000iui for every 25lbs of body weight to maintain 70. I had slipped up and had only been taking 5000iui when I thought it was 10000iui and my levels dropped down to 43. I normally take 10000iui m-f.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Let me jump in and ask you folks a question: how much supplemental D3 does it take for you to maintain levels in the 70? I have to take 10,000 IU to keep it there, and that seems like a lot. Just looking for a point of comparison. Thanks!

That is the level I would have to take to stay around 70. I currently take 5000/day and that just barely keeps me in range 50-55. My doctor would like to see it in the 70's also.