Why arenDeplin?

[topaz]

I, too, have done some reading at MTHFR.net, and if this guy HAS an MTHFR SNP (edit here -- ok, he does; they are silly with it, in fact) I wonder how well he is feeling? I wonder if he has looked at biochemistry, and has realized that folate and cobalamin need potassium to work.

Has he himself had horrid IBS for years that quickly cleared up by leaving out ONE nutrient from his diet, and supplementing several others?


Keep in mind he also has products to sell, and he may not have paid his neuropathy dues so to speak (with personal painful physical experience that has healed).

Always keep in mind where someone is coming from.

I am glad he is out there, though. At least if someone looks up my problem, his explanation could help them understand it.

Hi Rosebud

What is the one nutrient that cleared up your IBS? (Folic acid??) and with "supplementing several others" are you referring to methylation protocol?

Thanks

 

[Freddd]

Freddd

Im feeling left out (lol!). Im really not supplementing with potassium and appear not to have any potassium deficiency symptoms. Could this mean that I am not healing?

Hi Topaz,

The potassium drop happens when a lot of pent up delayed healing, like a person with partial methylation block has, when methylation is restarted. It relates to RATE of healing. If a person has been at equilbrium on potassium and their healing increases a little and they have plenty of potassium, they likely will never notice it. The amount of additional needed appears to be within ordinary ranges of food obtained potassium. Some of us have a problem becasuse restricting folate containing foods also restricts potassium containing foods. Also, there is lots of healing that happens slowly that doens't make for a sudden increase in potassium need.

So now it comes down to what is your list of symptoms from that long list in BASICS? And what supplements are you taking? If you don't have the symptoms that require potaqssium to heal, no lack likely present. If you don't take the supplements needed to heal them, no lack is created. SO let's go to the basics of your situation and do the analysis. I have a version of the symptoms list that matches the symptoms up to various nutrients.

 

[topaz]

Deep thanks for your help Freddd.

From your list of symptoms of potassium deficiency, my symptoms are:
- constipation (however as I have IBS, this does not appear worse than pre-methylation ie it is constant. Nb I require 500mg magnesium nightly to assist in movement)
- fatigue (brain/cognitive fatigue - much more mental than physical, however with brain fog, physical activity level declines also but I do not feel particularly physically weak)
- no muscle weakness, spasms or cramps.

Did you mean symptoms from the Active B12 Basics post? If so, the symptoms which were present when I was diagnosed with ME were: brain fog (severe), loss of appetite, extreme physical fatigue, all gut/bowel symptoms except diarrhea which together are IBS, chronic malaise, poor concentration, difficulty assimilating new information, reduced task completion, moodiness, tiredness, impaired connection to others, mentally fuzzy, foggy, brainfog, mild to extremely severe fatigue, continuous extremely severe fatigue, non restorative sleep, hair loss and poor condition of hair.

The brain fog is my worst symptom, mainly because it affects one's 'soul' and is a complete loss of self. This has fluctuated in severity but since being diagnosed almost 12 months ago, I have only had two days last June when I was 'normal' again. I do not know what was different that happened to cause this brief remission (so welcomed after such debilitation that I still recall it today) but something came together and brought a taste of recovery - if only for 2 days. I am unable to work due to brain fog but am not bed ridden but my cognitive activity is obviously severely limited. I gone from being a very active (cycling in the Andes, running 8km 5x week) functioning executive to being unable to work with brain function that at times is what I call 'being in a walking coma' - it impacts everything including ability to plan anything and interaction with others. That's at its worst.

Testing has indicated normal thyroid (T3, T4, TSH) but very low iodine and I am on an iodine supplement. Urinary amino acid showed low seratonin and tyrosine so my practitioner put me on 5HTP and L-tyrosine, stool analysis showed low levels of good bacteria (am on a broad spectrum pro biotic) but no parasites or yeast etc and low stomach acid. Saliva indicated high night time cortisol (for which my practitioner prescribed valium/diazepam - disastrous results from 1/4 of a small dose tablet and knocked me out for almost a week) DHEA mid normal range. I am heterozygous 677 but I believe in my case it was a series of extreme stressors that 'broke the camels back' and for once, I didnt bounce back.

I am not supplementing with much Potassium either (refer below). Bloods taken 4/5 days after commencement of methylation showed potassium in mid normal range. Maybe I should re-test at this stage??


Freddds Active B12 Protocol started over 3 weeks ago. All supplements from the protocol were commenced with the exception of TMG + SAMe which were added just over a week ago.

Adverse symptoms since commencing: deterioration in cognition ie increase in brain fog (significant), grogginess lasting well into the day and sometimes all day/unrestorative sleep plus increase in depression and tearfulness for past 1 1.5 weeks (particularly noticeable this last week). Today all I have been able to do is make 2 calls, read a few posts on PR and post this. Note that I was absent interstate when I commenced this protocol but was taking B12/Folate/adl 12 daily but variable with the other supplements (just forgot or didnt have time with young nephew commitments). For the past 2+ weeks I have been taking all the supplements below daily. Some of the supplements forming part of the protocol were taken previously (Vit E, C, D, Mg, 5HTP, Fish oil, CoQ10, molybdenum, zinc, niacin, d-ribose, acetyl L-carnitine + amino acids (now ceased).

I am at a loss at what is causing this but it could be a change in brand of 5 HTP which coincided with methylation (from Thorne to NAtural Factors - Thorne was previously taken for over 2 months); the SAMe or TMG (unlikely imo), B12/Folate ratio or just the not unexpected deterioration before improvement is noticed (per Richvank's lecture).

I am almost as concerned about my lack of potassium deficiency symptoms as I am about the brain fog return since commencing methylation as I worry that the lack of potassium symptoms given my low supplementing may indicate insufficient healing is taking place.

Any thoughts appreciated.

SUPPLEMENT LIST FROM FREDDDS ACTIVE B12 PROTOCOL:
Jarrow Formulas 5mg Methyl B12
(Dose: 1 x 5mg daily under tongue for about 20 minutes I cant make it last your suggested 45 minutes. Nb: have increased dose to 10mg and 15mg on several random days. Is it preferable to take a 5mg tablet over 3-4 doses rather than once/day?).

Solgar Metafolin 800mcg
(Dose: 2 8 tablets daily. Random doses while I try to determine optimal level??)

Source Naturals Dibencozide 10mg
(Dose: - 1 daily under upper lip or tongue for about 20minutes I cant make it last for your suggested 45-120 minutes for best effectiveness. Dose increased to 1 x day when Methyl B12 is increased)

Douglas Laboratories B-complex with Metafolin
(Dose: 1 day. Maybe should increase to 2/day??)

Potassium phosphate dibasic 33 mg
(Dose: 1x daily [+ 55mg potassium asapartate taken as part of magnesium supplement, per below, - now discontinued. ])

Omega3 fishoils
(Dose: Alternate between 1T fishoil and 1T Cod Liver Oil daily. Cod Liver Oil is my source of natural Vit A - 1T CLO provides 4550 IU Vit A every alternate day.)

Zinc - Solgar Picolinate 22mg
(Dose: 1 x day. Maybe should increase to 2/day to get your suggested 50 mg).

Magnesium supplement**
(Dose: until 2 days ago I took a magnesium complex powder which contained 280 mg magnesium + 500mg glutamine + 150mcg folic acid. Now discontinued due to folic acid and glutamine. Despite being very vigilant in reviewing vitamins, this one had been a practitioner prescribed staple for so long that it slipped through the cracks.
Replaced with Magnesium amino acid chelate providing 100 mg equivalent magnesium. Dose: 7x day with 5x taken at night to assist in gut motility IBS constipation.)

D3 drops 1000 IU/drop
(Dose: 3000-5000 IU daily)

Vitamin E Carlson Gamma complex
(Dose: 1 x daily)

Vitamin C Twin Lab Super C
(Dose: 2000 4000 mg daily)

SAM-e 400mg Dr Best
(Dose: 1 x day)

TMG
(Dose: 1.25 2.5 g daily, mostly 1.25g (1/2 t) daily)

L-carnitine fumarate Dr Best 500mg
(Dose: 1 x day)

Alpha Lipoic Acid Source Naturals 600 mg
(Dose: 1x day)

D-Ribose Healthy Origins
(Dose: 1t/5g per day)

OTHER DAILY SUPPLEMENTS NOT FROM ACTIVE B12 PROTOCOL:
CoQ10 150 mg
(Dose: 1 -2 daily (150 300 mg daily))

Molybdenum drops 27.7 mcg/drop
(Dose: 5 drops/day)

Thyroplex (Iodine 145mcg, selenium 50mcg, zinc 10mg, tyrosine 500 mg, cysteine hydrochloride 25 mg, methione 25 mg, taurine 25 mg + Vit A, Vit C + Vit D3 + Vit E)
(Dose: x 3 day: prescribed for low iodine)

L-Tyrosine 500mg
(Dose: 1 x day)

5-HTP Natural Factors 100 mg
(2 x day taken at night)

Nicotinic acid (flushing niacin) 100 mg
(Dose: pre-methylation 3 x day taken regularly but not frequently. Have not taken since commencing methylation but I am thinking of recommencing).

TO BE ADDED (as soon as order is placed and arrives):
Phosphatidyl serine complex (with phosphatidyl choline)

Hydrozyme (Betain hydrochloride 400 mg, Glutamic acid 100 mg, Pepsin 100 mg)
(Dose: 1 tablet before meals. Prescribed by practitioner for low stomach acid)

P5P
(Dose: ???)

Thank you

 

[Rosebud Dairy]

Hi Rosebud

What is the one nutrient that cleared up your IBS? (Folic acid??) and with "supplementing several others" are you referring to methylation protocol?

Thanks

/QUOTE]

Hi Topaz,

I think folic acid may aggravate my IBS - I am still, however, titrating up my potassium.
Everyday I take metafolin (titrating up from 10 mg/day split into 3-5 doses), Mb12 (Jarrow 5mg) and ad-b12 (natural factors)

Right now, I am having some consistent nausea (up the potassium?) and my left leg has been hurting terribly for the last two weeks. A couple of days ago, I began to increase metafolin, and to take the mb12 more throughout the day.

As I up the potassium, my IBS in increasing, so I am not totally sure that what I am doing is exactly right, but I keep reading and going.

 

[Freddd]

Hi Rosebud

What is the one nutrient that cleared up your IBS? (Folic acid??) and with "supplementing several others" are you referring to methylation protocol?

Thanks

/QUOTE]

Hi Topaz,

I think folic acid may aggravate my IBS - I am still, however, titrating up my potassium.
Everyday I take metafolin (titrating up from 10 mg/day split into 3-5 doses), Mb12 (Jarrow 5mg) and ad-b12 (natural factors)

Right now, I am having some consistent nausea (up the potassium?) and my left leg has been hurting terribly for the last two weeks. A couple of days ago, I began to increase metafolin, and to take the mb12 more throughout the day.

As I up the potassium, my IBS in increasing, so I am not totally sure that what I am doing is exactly right, but I keep reading and going.

Hi Rosebud,

While folic acid might up the diarrhea, methylfolate will get rid of the folate deficiency in a large enough dose if that is what is causing the IBS. Potassium lack generally isn't assoicated with IBS.

 

[Rosebud Dairy]

"large enough dose" of metafolin - looking to try 7.5 pre-load before or with meals - depending on the meal and my ability to remember to take it.

I am not sure if loose still is just from raw fruits and veg - I hope not! - or from not enough of something. Really motivated to figure this one out.

It has taken me two weeks to really recover from my folic acid/wheat eating event. My sinuses got really bad the next day, and I felt awful. My sinuses are just now recovering, as are some of the other symptoms.

 

[rydra_wong]

I can't take Metafolin as 1 single or even 2 large doses in a day. I need it more frequently. Timing with food, and other times without, is what works for me. I take 5 doses a day

Freddd, what happens if you take th e mfolate all at once? I am wondering if this is how you stabilize such a large dose? Because taking it at once was very unstable for me - it caused my methylation to be stopped and a scramble for supplement balance to get it working again. Also more potassium issues. I am not up for taking anything 5x/day. How do you ever manage it? Do you set an alarm n your cell? Carry around 5 different pilles of pills to take and have to remember which is for morning, which for mid-morning...etc it sounds like a nightmare to me.

 

[Freddd]

Freddd, what happens if you take th e mfolate all at once? I am wondering if this is how you stabilize such a large dose? Because taking it at once was very unstable for me - it caused my methylation to be stopped and a scramble for supplement balance to get it working again. Also more potassium issues. I am not up for taking anything 5x/day. How do you ever manage it? Do you set an alarm n your cell? Carry around 5 different pilles of pills to take and have to remember which is for morning, which for mid-morning...etc it sounds like a nightmare to me.

I have no idea. As the serum halflife is 3 hours you will be on an elevator. Not very stable. I take my last dose at bedtime and my first on wakeup and 3 more. I two other doses with meals as part of the vitamin packs I set out each week. The mid afternoon dose is with my mb12 midday injection. So no problem at all. I take all sorts of things at all sorts of times throughout the day. I've gotten used to it. I used to travel with a whole pharmacy bag with me all the time, a gadget bag filled with meds, an 8 ounce water bottle, some crackers or peanuts for those meds needing food. My premeasured vitamins for a one month period fills a shopping bag with baggies.

 

[chilove]

WOw... Fredd.... do you mind me asking you how much spend on supplements on a monthly basis?

Thanks,

Audrey

 

[rydra_wong]

The brain fog is my worst symptom, mainly because it affects one's 'soul' and is a complete loss of self. This has fluctuated in severity but since being diagnosed almost 12 months ago, I have only had two days last June when I was 'normal' again. I do not know what was different that happened to cause this brief remission (so welcomed after such debilitation that I still recall it today) but something came together and brought a taste of recovery - if only for 2 days. I am unable to work due to brain fog but am not bed ridden but my cognitive activity is obviously severely limited. I gone from being a very active (cycling in the Andes, running 8km 5x week) functioning executive to being unable to work with brain function that at times is what I call 'being in a walking coma' - it impacts everything including ability to plan anything and interaction with others. That's at its worst.

Testing has indicated normal thyroid (T3, T4, TSH) but very low iodine and I am on an iodine supplement. T

Topaz, brain fog can be a result of hypothyroid (buzzing is more likely hyPERthyroid). The lab ranges for thyroid are as wide as a barn door. Look at www.lef.org for what ranges are actually healthy:
One study showed that individuals with TSH values over 2.0 have an increased risk of developing overt hypothyroid disease over the next 20 years.16 Other studies show that TSH values over 1.9 indicate abnormal pathologies of the thyroid, specifically autoimmune attacks on the thyroid gland itself that can result in significant impairment.17

A more startling study showed that TSH values over 4.0 increase the prevalence of heart disease, after correcting other known risk factors.17 Another study showed that administration of thyroid hormone lowered cholesterol in patients with TSH ranges of 2.0-4.0 but had no effect in lowering cholesterol in patients whose TSH range was 0.2-1.9.18 It also showed that in people with elevated cholesterol, TSH values over 1.9 could indicate that a thyroid deficiency is the culprit, causing excess production of cholesterol, whereas TSH levels below 2.0 would indicate a normal thyroid hormone status.

Doctors routinely prescribe cholesterol-lowering drugs to patients without properly evaluating their thyroid status. Based on the evidence presented to date, it might make sense for doctors to first attempt to correct a thyroid deficiency (based on a TSH value over 1.9) instead of resorting to cholesterol-lowering drugs.

In a study done to evaluate psychological well being, impairment was found in patients with thyroid abnormalities who were nonetheless within normal TSH reference ranges.19 The authors of a study published in the August 3, 2002, issue of The Lancet stated that the emerging epidemiological data begin to suggest that TSH concentrations above 2.0 (mU/L) may be associated with adverse effects.

Mild hypothyroidism (low thyroid gland function) may be associated with reversible hyper-cholesterolemia (high blood cholesterol) and cognitive dysfunction, as well as such nonspecific symptoms as fatigue, depression, cold intolerance, dry skin, constipation, and weight gain. Mild hyperthyroidism is often associated with atrial fibrillation and reduced bone mineral density and nonspecific symptoms such as fatigue, weight loss, heat intolerance, nervousness, insomnia, muscle weakness, dyspnea, and palpitations, among others.

Measurement of TSH is the best test for assessing thyroid function. Currently, the American Thyroid Association recommends TSH testing beginning at age 35, and every five years thereafter.73 Comparing the ratios between TSH, T3, and T4 blood levels, though, may elucidate definitive diagnosis. This is extremely important, given that the majority of people with mild hypo- or hyperthyroidism are asymptomatic, and levels of thyroid hormones may be depressed or elevated only slightly.

Although the normally accepted upper range for TSH is 5.50 mcIU/mL, investigations have shown that blood levels equal and greater than 2.0 mcIU/mL may actually indicate adverse health effects:

TSH >2.0 mcIU/mL increased the 20-year risk of thyroid-induced autoimmune attack.74
TSH >4.0 mcIU/mL increased the risk of heart attack.75
On the positive side, when TSH levels are 2.0-4.0 mcIU/mL, cholesterol levels decline in response to T4 therapy.76