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puddleduck’s progress (CFS symptoms)

#161 · September 14, 2023, 8:11 am

Glad you’re on the mend, @orion! 🙂

tim and Joe2 have reacted to this post.

#162 · November 5, 2023, 3:27 pm

Quote from puddleduck on November 5, 2023, 3:27 pm
Firstly, please permit me this brief PSA: “Today, once more, they will replenish themselves, cheat death again, through the power of their source...” By which I mean, Matt Stone is making YouTube videos again, and I’m glad he’s back. 🙂 If anyone hasn’t seen his video on his experience going low vitamin A to improve his asthma, here’s the link:

https://youtu.be/rjrB90eYREs

4 MONTH UPDATE (September 2023): Oil-free Vegan Diet, High Omega 3, Avoiding Omega 6

The menstrual improvements held! 🥳🥳🥳

Due to the allergy symptoms and voice changes mentioned in my previous update, as well as a noted increase in my need for supplemental zinc, I eliminated gluten from my diet again starting in September. It took a couple of weeks, but the raspiness has gone from my voice (runny nose persists, though). Increased need for zinc remains.

5 MONTH UPDATE (October 2023): Oil-free (Mostly) Vegan Diet, 1:1 Omega 3-to-6 Ratio

This month, I decided to equalize my intake of “whole-food-based”omega 6 and 3, and fortunately doing so didn’t cause any backsliding with regards to my menstrual situation! So I will continue as long as the improvements hold. 🙂

This month I went traveling to see family for a couple of weeks, and ate a few meals involving meat, deep fried potato products, and even had half-a-piece of gluten free pumpkin pie with whipped cream (yes, the leg rash flared, lol 😅🦵🔥).

However, I made sure to consume 1/2 cup flaxseed and a banana smoothie with hemp hearts every morning for breakfast no matter what I was eating later in the day, and I found my gut was able to handle the occasional restaurant or high vitamin A meal much better than it was a year ago. I’d get a pimple or two, but even though I’d feel more bloated, elimination wasn’t halted and my energy levels stayed good!

Notable Improvements

I didn’t have a “Nap Attack” even once in November! And before that, they seemed to be happening much less frequently... 🤞 Feeling super hopeful about reversing that symptom for good! 🙏🌈☀️

I can do half-push-ups now lol (I couldn’t do them a year ago when I started working out; had to do doorframe push-ups) and have progressed to squats with weights.

I tolerate coffee/caffeine with no issue.

The acne on my back (a “side effect” of going low vitamin A) is gone now, and the scars are healing.

My skin seems to be trending towards healing in general.

Body temperature is warmer.

As of November 2023, I no longer need to take extra zinc, and have cut back by half to 80 mg daily.

Remaining Symptoms

Night Sweats - I’ve honestly considered going back on the inositol when they come on strong for a few days, but then they go away for a week and I want to figure out why. Suspect it is just a dysautonomia thing, the symptoms of which tend to flare around the same time: my period. Taking extra iron helps a lot at that time, so I think I am still rebuilding those stores. Other possible triggers: too much vitamin A and/or oxalate, too little folate and/or fiber.

Leg Rash - It’ll flare within 12 hours if I eat more than 250 mcg of retinol, and it takes 2 weeks to clear. 💥🤯

Gluten Sensitivity - Since there is a doctor shortage in my country, I decided not to bother getting a celiac test again. Regardless, it seems best to avoid it for now.

CFS/POTS - This syndrome affects me differently, now. I think I have firmly moved out of “rest mode,” into a healing stage involving higher energy levels, which strongly reminds me of how I felt in my teen years prior to my first PEM crash. If I exert myself too much, I tend to get extremely clumsy, overwhelmed (especially under high sensory overload), my words slur, I struggle to talk loudly enough, and at worst I get shaky, but I can still kinda push through it without triggering a full-on PEM crash. This does lead to insomnia, however, which results in an exhaustion that is more wired and less foggy...

Because my pattern directly prior to getting sick was the perfectionistic workaholism of which the Enneagram Type One is prone, I find this healing stage pulls me towards a similar-yet-decidedly-overmethylated anxiety-driven focus. Sluggishness accompanied by inner criticism motivates optimistic compassionate-self-talk and long periods of focused work.

Taking the time to interrupt my focused periods with breathing exercises and rest even when I am not physically compelled to do so, helps even out these mild ups and downs.

I believe the description given here by the Walsh Institute applies:

Overmethylation

Because of access to a large database of biochemical information from more than 20,000 patients with mental health problems, we have learned most of these persons have striking abnormalities in specific nutrients required for neurotransmitter production and functioning. For example, many persons who suffer from anxiety and depression are overmethylated which results in excessive activity at dopamine, norepinephrine and serotonin receptors. Typical symptoms include sleep disorders, underachievement, upper body pain, and an adverse reaction to serotonin-enhancing substances such as Prozac, Paxil, Zoloft, methionine, and SAMe. Nutrient treatment focuses on folates, Vitamins B-3 and B-12 that reduce activity of dopamine and norepinephrine. These persons should strictly avoid supplements containing copper, methionine, and other nutrients that could worsen anxiety and depression.

Norepinephrine is often chronically elevated in CFS/POTS patients.

And I have noticed getting enough legumes, fruits, veggies, and seeds at each meal gives me more stable energy throughout the day. Meals of whole grains alone tend to make me more “anxiously sluggish,” perhaps due to my higher need for folate and niacin, which are less abundant in whole grains than the foods listed prior. I feel better on brown rice than oatmeal, probably because brown rice contains more niacin than oatmeal does. 🥣

Current Supplement and Meal Routine

I have cut back on the supplements I take, because I’m at the point where I’m questioning the wisdom of trying to manipulate my body with anything that isn’t the most basic and critical of nutrients, since food really can provide most of what I need anyway now that my gut is getting healthy enough to absorb it.

Usually I am hungry for around 2,500 calories daily, more if heavily active.

Before Dawn

I take 1 to 2 drops of a kelp-based nascent iodine supplement

30 sprays of topical magnesium (magnesium chloride dissolved in water)

2 to 6 minutes of UVB lamp exposure

5 to 15 minutes of NIR lamp exposure

Breakfast

2,000 mcg capsule of “Pure Encapsulations” Adenosyl/Hydroxy unmethylated B12

600 mg Calcium Citrate Powder by “Now”

1 drop Thorne K2 supplement a couple of days per week (questioning the wisdom of this one, especially since a recent study showed that vegans have decent K2 levels)

Meal: frozen fruit smoothie made with at least 2 bananas, 3 tablespoons hemp hearts, and a few dates or brown rice porridge with bananas and hemp hearts on top

Lunch

I take one to two capsules (5 mg each) of the heme iron supplement by “Cardiovascular Research” called “Ferritin,” every other day, and every day during/a few days after menstration.

Meal: flaxseed crackers topped with sunflower and pumpkin seeds (baked at ultra low heat) with hummus/bean dip or vegetable/lentil/bean soup

Dinner - 5:00 p.m.

I take 80 mg to 160 mg of zinc picolinate (50 mg) and glycinate (30 mg) by “Now,” every day or every other day.

Meal: big salad bowl of raw shredded cabbage and/or chopped cauliflower and sliced avocado, usually with some lazier variation of the following on top (1) Mexican Bowl - black/pinto beans, corn, brown rice, raw salsa (2) Thai Bowl - brown rice pasta, baked tofu cubes, cucumber, homemade lime ginger peanut sauce (3) Raw Harvest Bowl - sliced beets, radish, green apple, sunflower seeds, pumpkin seeds, dried cranberries, sweet lemon mustard dressing (4) Legume Bowl - edamame, chickpeas, red onion, raisins, diced figs or dates, brown rice, chopped almonds or walnuts, garlic tahini dressing (5) Lima Olive Bowl - butter beans, mushrooms, kalamata olives, artichoke hearts, sun-dried tomatoes, oregano, balsamic vinaigrette

Bedtime - 9:00 p.m.

1/2 teaspoon salt

200 mg magnesium citrate

Hope everyone is staying cosy and healthy as winter approaches, and that y’all have a splendid Christmas season! ❄️

P.S. Orion’s comment above reminds me I must start eating more lacto-fermented veggies again, too.

Firstly, please permit me this brief PSA: “Today, once more, they will replenish themselves, cheat death again, through the power of their source...” By which I mean, Matt Stone is making YouTube videos again, and I’m glad he’s back. 🙂 If anyone hasn’t seen his video on his experience going low vitamin A to improve his asthma, here’s the link:

https://youtu.be/rjrB90eYREs

4 MONTH UPDATE (September 2023): Oil-free Vegan Diet, High Omega 3, Avoiding Omega 6

The menstrual improvements held! 🥳🥳🥳

Due to the allergy symptoms and voice changes mentioned in my previous update, as well as a noted increase in my need for supplemental zinc, I eliminated gluten from my diet again starting in September. It took a couple of weeks, but the raspiness has gone from my voice (runny nose persists, though). Increased need for zinc remains.

5 MONTH UPDATE (October 2023): Oil-free (Mostly) Vegan Diet, 1:1 Omega 3-to-6 Ratio

This month, I decided to equalize my intake of “whole-food-based”omega 6 and 3, and fortunately doing so didn’t cause any backsliding with regards to my menstrual situation! So I will continue as long as the improvements hold. 🙂

This month I went traveling to see family for a couple of weeks, and ate a few meals involving meat, deep fried potato products, and even had half-a-piece of gluten free pumpkin pie with whipped cream (yes, the leg rash flared, lol 😅🦵🔥).

However, I made sure to consume 1/2 cup flaxseed and a banana smoothie with hemp hearts every morning for breakfast no matter what I was eating later in the day, and I found my gut was able to handle the occasional restaurant or high vitamin A meal much better than it was a year ago. I’d get a pimple or two, but even though I’d feel more bloated, elimination wasn’t halted and my energy levels stayed good!

Notable Improvements

I didn’t have a “Nap Attack” even once in November! And before that, they seemed to be happening much less frequently... 🤞 Feeling super hopeful about reversing that symptom for good! 🙏🌈☀️
I can do half-push-ups now lol (I couldn’t do them a year ago when I started working out; had to do doorframe push-ups) and have progressed to squats with weights.
I tolerate coffee/caffeine with no issue.
The acne on my back (a “side effect” of going low vitamin A) is gone now, and the scars are healing.
My skin seems to be trending towards healing in general.
Body temperature is warmer.
As of November 2023, I no longer need to take extra zinc, and have cut back by half to 80 mg daily.

Remaining Symptoms

Night Sweats - I’ve honestly considered going back on the inositol when they come on strong for a few days, but then they go away for a week and I want to figure out why. Suspect it is just a dysautonomia thing, the symptoms of which tend to flare around the same time: my period. Taking extra iron helps a lot at that time, so I think I am still rebuilding those stores. Other possible triggers: too much vitamin A and/or oxalate, too little folate and/or fiber.
Leg Rash - It’ll flare within 12 hours if I eat more than 250 mcg of retinol, and it takes 2 weeks to clear. 💥🤯
Gluten Sensitivity - Since there is a doctor shortage in my country, I decided not to bother getting a celiac test again. Regardless, it seems best to avoid it for now.
CFS/POTS - This syndrome affects me differently, now. I think I have firmly moved out of “rest mode,” into a healing stage involving higher energy levels, which strongly reminds me of how I felt in my teen years prior to my first PEM crash. If I exert myself too much, I tend to get extremely clumsy, overwhelmed (especially under high sensory overload), my words slur, I struggle to talk loudly enough, and at worst I get shaky, but I can still kinda push through it without triggering a full-on PEM crash. This does lead to insomnia, however, which results in an exhaustion that is more wired and less foggy...

Because my pattern directly prior to getting sick was the perfectionistic workaholism of which the Enneagram Type One is prone, I find this healing stage pulls me towards a similar-yet-decidedly-overmethylated anxiety-driven focus. Sluggishness accompanied by inner criticism motivates optimistic compassionate-self-talk and long periods of focused work.

Taking the time to interrupt my focused periods with breathing exercises and rest even when I am not physically compelled to do so, helps even out these mild ups and downs.

I believe the description given here by the Walsh Institute applies:

Overmethylation

Because of access to a large database of biochemical information from more than 20,000 patients with mental health problems, we have learned most of these persons have striking abnormalities in specific nutrients required for neurotransmitter production and functioning. For example, many persons who suffer from anxiety and depression are overmethylated which results in excessive activity at dopamine, norepinephrine and serotonin receptors. Typical symptoms include sleep disorders, underachievement, upper body pain, and an adverse reaction to serotonin-enhancing substances such as Prozac, Paxil, Zoloft, methionine, and SAMe. Nutrient treatment focuses on folates, Vitamins B-3 and B-12 that reduce activity of dopamine and norepinephrine. These persons should strictly avoid supplements containing copper, methionine, and other nutrients that could worsen anxiety and depression.

Norepinephrine is often chronically elevated in CFS/POTS patients.

And I have noticed getting enough legumes, fruits, veggies, and seeds at each meal gives me more stable energy throughout the day. Meals of whole grains alone tend to make me more “anxiously sluggish,” perhaps due to my higher need for folate and niacin, which are less abundant in whole grains than the foods listed prior. I feel better on brown rice than oatmeal, probably because brown rice contains more niacin than oatmeal does. 🥣

Current Supplement and Meal Routine

I have cut back on the supplements I take, because I’m at the point where I’m questioning the wisdom of trying to manipulate my body with anything that isn’t the most basic and critical of nutrients, since food really can provide most of what I need anyway now that my gut is getting healthy enough to absorb it.

Usually I am hungry for around 2,500 calories daily, more if heavily active.

Before Dawn

I take 1 to 2 drops of a kelp-based nascent iodine supplement
30 sprays of topical magnesium (magnesium chloride dissolved in water)
2 to 6 minutes of UVB lamp exposure
5 to 15 minutes of NIR lamp exposure

Breakfast

2,000 mcg capsule of “Pure Encapsulations” Adenosyl/Hydroxy unmethylated B12
600 mg Calcium Citrate Powder by “Now”
1 drop Thorne K2 supplement a couple of days per week (questioning the wisdom of this one, especially since a recent study showed that vegans have decent K2 levels)
Meal: frozen fruit smoothie made with at least 2 bananas, 3 tablespoons hemp hearts, and a few dates or brown rice porridge with bananas and hemp hearts on top

Lunch

I take one to two capsules (5 mg each) of the heme iron supplement by “Cardiovascular Research” called “Ferritin,” every other day, and every day during/a few days after menstration.
Meal: flaxseed crackers topped with sunflower and pumpkin seeds (baked at ultra low heat) with hummus/bean dip or vegetable/lentil/bean soup

Dinner - 5:00 p.m.

I take 80 mg to 160 mg of zinc picolinate (50 mg) and glycinate (30 mg) by “Now,” every day or every other day.
Meal: big salad bowl of raw shredded cabbage and/or chopped cauliflower and sliced avocado, usually with some lazier variation of the following on top (1) Mexican Bowl - black/pinto beans, corn, brown rice, raw salsa (2) Thai Bowl - brown rice pasta, baked tofu cubes, cucumber, homemade lime ginger peanut sauce (3) Raw Harvest Bowl - sliced beets, radish, green apple, sunflower seeds, pumpkin seeds, dried cranberries, sweet lemon mustard dressing (4) Legume Bowl - edamame, chickpeas, red onion, raisins, diced figs or dates, brown rice, chopped almonds or walnuts, garlic tahini dressing (5) Lima Olive Bowl - butter beans, mushrooms, kalamata olives, artichoke hearts, sun-dried tomatoes, oregano, balsamic vinaigrette

Bedtime - 9:00 p.m.

1/2 teaspoon salt
200 mg magnesium citrate

Hope everyone is staying cosy and healthy as winter approaches, and that y’all have a splendid Christmas season! ❄️

P.S. Orion’s comment above reminds me I must start eating more lacto-fermented veggies again, too.

Bella, tim and 5 other users have reacted to this post.

#163 · June 15, 2024, 12:43 pm

Quote from puddleduck on June 15, 2024, 12:43 pm
Short update: been busy lately, but since I just got some blood work done, I wanted to pop in to record a few positive and negative highlights from the past seven months.

+ POSITIVES +
=============

1. My TSH dropped 2 points back to normal! I thought this was the case, since as already documented, my wellness increased after I started taking iodine and using iodized salt. Don’t neglect iodine, guys! It’s an essential nutrient. (And also: I’ve never eaten more cruciferous vegetables and soy in my life than I have this past year, so as the literature indicates, iodine sufficiency is key to tolerating and thriving on those foods!)

2. Kimberly’s High-Dose Activated Charcoal Cleanse and a high-raw/high-fruit intake has gotten my gut to the point where I have FINALLY been able to increase my soluble fiber intake substantially without developing a constipation reaction! I’ll write more about this hopefully in the future, but the cleanse protocol is on The Charcoal Times website if anyone wants to check it out. It took several months, and it was a rocky road—to say the least—so this is pretty major. 😁

3. My serum retinol is lower than last time I tested. I mean, hopefully that’s good, at least insofar as I haven’t any signs of vitamin A deficiency. But who knows what the future may hold...

- NEGATIVES -
=============

4. My ceruloplasmin tested deficient. It’s odd.

5. My serum copper tested deficient. Also odd, since I do not restrict copper in any way, and therefore typically consume 2 to 4 mg copper from plant foods daily.

6. My ferritin tested deficient. This has always been the case, but I guess I haven’t supplemented high enough doses to restore my stores yet?

7. My zinc tested deficient. Even though I was supplementing prior to the blood test...Also, even on a vegan diet, my dietary zinc intake is naturally many more mg higher than copper. From what I’ve read, zinc tends to outcompete copper for absorption in the gut (will add a reference later if I remember).

8. I tried eating mangos every day for a few days, and the leg rash came back. It was kind of hilarious timing, too, since Grant posted his article about the mango as the tree of the knowledge of good and evil at exactly the same time I start eating mangoes for the first time in five years. 😂 Cracks me up! You’re the best, Grant, even though I must confess I really do love mangoes... 👁 ♥️ 🥭

Closing Thoughts

I am not interested in debating the pros and cons of veganism or in reading arguments on why I should resume daily beef consumption. I’ve heard ‘em in Dr. Smith’s network already. 😉 The option isn’t entirely off table, and I appreciate the spirit in which such advice is offered. But I feel I’ve “been there, done that” so I’m gonna hold off on going in that direction for now. If I do change course, I’ll be sure to post about how it goes. Also: the only 100% retinol-free diet is a vegan diet. Just sayin’.

Pernicious anemia is a possible factor here, because although I tested negative for parietal cell and intrinsic factor antibodies, that’s a confirmatory marker only. It’s doesn’t in any way indicate B12 absorption is optimal.

And I’m aware Wilson’s Disease is a, albeit slight, possibility. Will see if I can get a 24-hour-urine copper test to hopefully rule it out. 🤞

Part of me thinks maybe I’ve driven my copper too low supplementing zinc, but yet zinc supplements still do relieve certain symptoms for me (if I’m sick, etc)...so I dunno what to think. It’s weird zinc would be so low after this many years of supplementing.

Anyway, thinking aloud here, so I’ll sign off for now. There are some big situations in my personal life right now, so if anyone leaves a reply please know I’ll read it and appreciate it, I just might be super slow to respond.

Hope all of you are enjoying your summer! ☀️💛😎 I’ve planted tomatoes in the garden, and I’m excited about it because I can eat them in moderation with no real issue now. 😂 All the best to each of you.

Short update: been busy lately, but since I just got some blood work done, I wanted to pop in to record a few positive and negative highlights from the past seven months.

+ POSITIVES +
=============

1. My TSH dropped 2 points back to normal! I thought this was the case, since as already documented, my wellness increased after I started taking iodine and using iodized salt. Don’t neglect iodine, guys! It’s an essential nutrient. (And also: I’ve never eaten more cruciferous vegetables and soy in my life than I have this past year, so as the literature indicates, iodine sufficiency is key to tolerating and thriving on those foods!)

2. Kimberly’s High-Dose Activated Charcoal Cleanse and a high-raw/high-fruit intake has gotten my gut to the point where I have FINALLY been able to increase my soluble fiber intake substantially without developing a constipation reaction! I’ll write more about this hopefully in the future, but the cleanse protocol is on The Charcoal Times website if anyone wants to check it out. It took several months, and it was a rocky road—to say the least—so this is pretty major. 😁

3. My serum retinol is lower than last time I tested. I mean, hopefully that’s good, at least insofar as I haven’t any signs of vitamin A deficiency. But who knows what the future may hold...

- NEGATIVES -
=============

4. My ceruloplasmin tested deficient. It’s odd.

5. My serum copper tested deficient. Also odd, since I do not restrict copper in any way, and therefore typically consume 2 to 4 mg copper from plant foods daily.

6. My ferritin tested deficient. This has always been the case, but I guess I haven’t supplemented high enough doses to restore my stores yet?

7. My zinc tested deficient. Even though I was supplementing prior to the blood test...Also, even on a vegan diet, my dietary zinc intake is naturally many more mg higher than copper. From what I’ve read, zinc tends to outcompete copper for absorption in the gut (will add a reference later if I remember).

8. I tried eating mangos every day for a few days, and the leg rash came back. It was kind of hilarious timing, too, since Grant posted his article about the mango as the tree of the knowledge of good and evil at exactly the same time I start eating mangoes for the first time in five years. 😂 Cracks me up! You’re the best, Grant, even though I must confess I really do love mangoes... 👁 ♥️ 🥭

Closing Thoughts

I am not interested in debating the pros and cons of veganism or in reading arguments on why I should resume daily beef consumption. I’ve heard ‘em in Dr. Smith’s network already. 😉 The option isn’t entirely off table, and I appreciate the spirit in which such advice is offered. But I feel I’ve “been there, done that” so I’m gonna hold off on going in that direction for now. If I do change course, I’ll be sure to post about how it goes. Also: the only 100% retinol-free diet is a vegan diet. Just sayin’.

Pernicious anemia is a possible factor here, because although I tested negative for parietal cell and intrinsic factor antibodies, that’s a confirmatory marker only. It’s doesn’t in any way indicate B12 absorption is optimal.

And I’m aware Wilson’s Disease is a, albeit slight, possibility. Will see if I can get a 24-hour-urine copper test to hopefully rule it out. 🤞

Part of me thinks maybe I’ve driven my copper too low supplementing zinc, but yet zinc supplements still do relieve certain symptoms for me (if I’m sick, etc)...so I dunno what to think. It’s weird zinc would be so low after this many years of supplementing.

Anyway, thinking aloud here, so I’ll sign off for now. There are some big situations in my personal life right now, so if anyone leaves a reply please know I’ll read it and appreciate it, I just might be super slow to respond.

Hope all of you are enjoying your summer! ☀️💛😎 I’ve planted tomatoes in the garden, and I’m excited about it because I can eat them in moderation with no real issue now. 😂 All the best to each of you.

Bella, Janelle525 and 2 other users have reacted to this post.

#164 · June 16, 2024, 3:52 am

Quote from ItsMe on June 16, 2024, 3:25 am

@puddleduck In regards to the low ceruloplasmin,copper,ferritin....this might be controversial seeing the theory about vit.A here, but vit.A is (supposedly) a keyplayer in the iron metabolism.

Vit.A activates and moderates ceruloplasmin, which is needed to load in the copper. Copper is needed to bind and shuttle iron,so it doesn't get stored in the liver and tissues. VA also regulates hepcidin production in the liver.

Morley Robbins is the total opposite to here,as he advocates taking CLO and eating liver for its vit.A content, (don't pay attention to that) but he talks a lot about this iron mechanism .

It's something I'm struggling with and trying to balance while I'm circling the drain.

In my recent progress update posts I wrote about starting eating small amounts of liver pate again and noticing major improvements. Previously, I've had both low ceruloplasmin and copper, while my zinc was high at one time and then closer to the lower end of the reference range at another. My iron metabolism has also been wonky, with consuming high-iron foods leading to increasing transferrin saturation (up to 50%) while ferritin remained low (15-30). I'll re-do the copper, zinc and iron panels in the near future to check if vitamin A is indeed needed for proper metabolism of those.

puddleduck and Joe2 have reacted to this post.

#165 · June 16, 2024, 6:33 am

Quote from Viktor on June 16, 2024, 6:33 am

Quote from ItsMe on June 16, 2024, 4:42 am

@viktor yeah, according to Morley bloodresults for iron can be low,even aneamic, meaning that the free iron is being stored away in the liver and tissues, leading to all kinds of health problems and eventually even hemochromatosis. Ray Peat wasn't much of a fan of iron either....so it doesn't seem to be such an innocent to be overlooked nutrient either,which makes me question if this mechanism going faulty is involved for some vit.a toxic people.

I can only think : Yikes! when I see people claiming VA and Copper are toxins and have no place in a diet.

Vitamin A, copper and iron can indeed be toxic, the latter two more so when one has a genetic predisposition. I had vitamin A toxicity for a long time and actually thought my vitamin A overload symptoms were due to vitamin A deficiency (lol, i know). I have a university degree and am not retarded, by the way. I still have some symptoms, which doesn't mean vitamin A is bad for everyone in any amount. I believe it's vital for many bodily functions and shouldn't be avoided. Anyway, when I received my first test results showing I had low ceruloplasmin and copper, being pretty low A at that time, my immediate first step was to get a DNA test for the Wilson's disease. It came back negative for all possible SNPs. I do have a heterozygous hemochromatosis mutation, but I don't think it fully accounts for my strange iron fluctuations (normal hemoglobin, normal to highish saturation, low ferritin). That has led me to believe that my long abstinence from eating liver had screwed me quite a bit, almost as bad as overeating liver in the past. I don't know yet what exact nutrient(s) in the liver make me feel better, and I'm not 100% recovered from vitamin A/carotene toxicity (i.e. I can't eat a huge bowl of green salad every day and feel fine like most normal people can), but I know I'm getting there. I think I can retest my ceruloplasmin, copper, zinc, vitamin d, iron and ferritin in a couple weeks.

Quote from ItsMe on June 16, 2024, 4:42 am

@viktor yeah, according to Morley bloodresults for iron can be low,even aneamic, meaning that the free iron is being stored away in the liver and tissues, leading to all kinds of health problems and eventually even hemochromatosis. Ray Peat wasn't much of a fan of iron either....so it doesn't seem to be such an innocent to be overlooked nutrient either,which makes me question if this mechanism going faulty is involved for some vit.a toxic people.

I can only think : Yikes! when I see people claiming VA and Copper are toxins and have no place in a diet.

Vitamin A, copper and iron can indeed be toxic, the latter two more so when one has a genetic predisposition. I had vitamin A toxicity for a long time and actually thought my vitamin A overload symptoms were due to vitamin A deficiency (lol, i know). I have a university degree and am not retarded, by the way. I still have some symptoms, which doesn't mean vitamin A is bad for everyone in any amount. I believe it's vital for many bodily functions and shouldn't be avoided. Anyway, when I received my first test results showing I had low ceruloplasmin and copper, being pretty low A at that time, my immediate first step was to get a DNA test for the Wilson's disease. It came back negative for all possible SNPs. I do have a heterozygous hemochromatosis mutation, but I don't think it fully accounts for my strange iron fluctuations (normal hemoglobin, normal to highish saturation, low ferritin). That has led me to believe that my long abstinence from eating liver had screwed me quite a bit, almost as bad as overeating liver in the past. I don't know yet what exact nutrient(s) in the liver make me feel better, and I'm not 100% recovered from vitamin A/carotene toxicity (i.e. I can't eat a huge bowl of green salad every day and feel fine like most normal people can), but I know I'm getting there. I think I can retest my ceruloplasmin, copper, zinc, vitamin d, iron and ferritin in a couple weeks.

puddleduck and Joe2 have reacted to this post.

#166 · June 16, 2024, 4:17 pm

Quote from ItsMe on June 16, 2024, 3:25 am

@puddleduck In regards to the low ceruloplasmin,copper,ferritin....this might be controversial seeing the theory about vit.A here, but vit.A is (supposedly) a keyplayer in the iron metabolism.

Vit.A activates and moderates ceruloplasmin, which is needed to load in the copper. Copper is needed to bind and shuttle iron,so it doesn't get stored in the liver and tissues. VA also regulates hepcidin production in the liver.

Morley Robbins is the total opposite to here,as he advocates taking CLO and eating liver for its vit.A content, (don't pay attention to that) but he talks a lot about this iron mechanism .

It's something I'm struggling with and trying to balance while I'm circling the drain.

Appreciate this, thank you @ItsMe! Yeah, I neglected to mention in my update post that I was thinking these blood results could be related to too little vitamin A, which is part of what motivated me to share right away actually. It's important to consider.

One more thing also, I don't have time to double check to confirm ATM, but going off memory I believe we need iron to utilize beta carotene, too. Right? Low iron has been a struggle for me all my adult life due to menorrhagia, so maybe there's a bottleneck insofar as conversion goes, too...

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#167 · June 16, 2024, 4:39 pm

Thank you so much for sharing your experience with me @Viktor! And man, I thought my vitamin A toxicity symptoms were deficiency symptoms for the longest time, too. xD So I can certainly understand. Have you tested your B12? I'll read your log and will follow to be updated whenever you post about your next labs and your journey in general.

It's helpful to know that you still can't tolerate green salads every day yet, either. I do try to eat an orange every day now, but haven't really tested greens more than twice in the past year.

And @itsme, I appreciate hearing your experience, too, although I am very sorry to hear how badly you are feeling.

There's gotta be a path out of this, eh? It's such a puzzle... Hoping you both continue to find ways of improving your symptoms, and healing whatever imbalances are at play.

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#168 · June 17, 2024, 12:20 am

Quote from ItsMe on June 16, 2024, 9:50 am

@viktor I'm sorry if my explanation came across as if you were dumb. I was just trying to be clear, for myself mostly too, how this mechanism works.

I notice I run mostly into bowel difficulties towards the end of my cycle and need VA/copper with the iron to keep bowel movements going. Probably bc of estrogen, since it's also related to copper.

However I don't tolerate VA well, immediately get drunk-like symptoms and my body continues to fall apart on me.

Lmao

No, I didn't mean that at all. It's just when I think about it now, feeling bad after starting to eat more liver, then reading online about all my symptoms and assuming it was all due to vitamin A deficiency, it was the dumbest decision of my life, which led to some bad consequences. It's not like I got myself Accutane toxicity per a doctor's prescription or from retinol-containing skincare. It was my actions alone which caused all that.

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#169 · June 17, 2024, 6:18 am

I have a great book about iron disorders, and it states that beta carotene increases iron absorbtion quite a bit! I need to re check how much, just read about it yesterday.

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#170 · June 17, 2024, 6:34 am

Quote from Inger on June 17, 2024, 6:34 am

Quote from ItsMe on June 17, 2024, 3:11 am

@puddleduck To be honest, I know nothing of the interaction between beta carotene and iron. Never heard Morley speaking specifically about beta carotene as the things he seems to favor are retinol sources.

One thing which I do find puzzling is,why when the body dumps stored VA, it has no effect on me being able to have bowel movements (with the body being filled with VA) nor does taking copper on it's own, it only seems to work when I get in a little bit of VA. (Which is a balancing act on it's own when trying to be somewhat functional).

I've been eating low A (between 0-75 IU) for 5 months now, yet I only seem to be getting physically worse; still unsteady difficulty walking, hair thinning and -loss and significant reduction in public hair possibly also eyelashes and brows (I'm starting to feel like a chemo patiënt :s ), cracked lips, teeth keep shortening,fingernails are brittle/completely torn off, very dry skin...when I take off clothes I see these fine white flakes flying around (despite using bodymilk), sometimes I have red spots in my face (histamine reaction possibly), my fat (and maybe water) especially belly&love handles is increasing...I sometimes feel like I'm becoming skinny fat and losing mostly muscle. The fat rolls feel more soft and squishy than they used to before. And what I'd noticed was when I ate mostly tallow, before going low A and switching to coconut oil, my breast became a little bit Fuller and rounder in shape while they now look less attractive again (sad saggy and more conical shaped). So yeah, I feel I'm turning into the worst physical version of myself after already working on everything for a decade. :/

@viktor oh ok. We all make mistakes in trying to do what we think is best for our health/lives at the time and sometimes we unfortunately pay a steep price for it. I've never had a liver eating/high VA habit,nor supplemented it or used such beauty products, yet I ended up here so it was my own action as well. We try to do the best we can, so don't be hard on yourself.

you sound a lot like me! I was just getting fatter and my belly got fat and boobs too and I just thought I looked like a grandma.. dry skin etc... grrr. So I changed it up about a month ago and started to eat mostly raw. Less protein, but lots of raw cheese! Roquefort, which is a delicious raw sheep milk cheese from France, I tolerate sheep milk and goat better than cow.

I had gotten tartar on one place on my teeth this spring after being a lot in the sun, my skin was horrible.. the belly fat etc. I started to think I might have vit K2 deficiency, avoiding all greens too. So I started eating like 100 gram Roquefort every day, raw eggyolks most days, lots of organic salad and veggies raw, for breakfast I do 1 avocado with lots of raw veggies/greens..... and only in the evening cooked legumes just alone or with veggies. No meat or protein with it. And very fast my body started to change! My belly fat is melting, my skin is better, my shape is starting to get beautiful again, boobies getting smaller... I am soooo happy :). At work this weekend one lady I work with asked my age, I said I am 47. She was like.. Whaaat... I thought you were 37?? She was shocked.. That was the best compliment, really, she did not see my wrinkles lol I am the wrinkliest of all! But she said i have this energy, I am so strong, and my shape is so beautiful... I take it! I told her I do yoga 20 min every day and she said she will start doing it too...

So just wanted to share in case you want to try out a mostly raw diet with some cooked legumes if it helps you. I want the soluble fiber but I am careful to not mix it with anything else except fat. Oh, I also started to eat butter again, every day some tbspoons. I am a lot in the sun, I am thinking vitamin A could be a good thing with sun and no fake light, and a bad thing with lots of fake light.. not sure. But I do know light has something to do with the vitamin A cycle. Also in summer there is lots of greens etc around, so would be natural to eat vitamin A/beta carotene then, and not in winter.

PS. the tartar on my teeth went away after a week or two on this regimen! I am pretty sure I was vitamin K2 deficient. My energy is also much better.

Quote from ItsMe on June 17, 2024, 3:11 am

@puddleduck To be honest, I know nothing of the interaction between beta carotene and iron. Never heard Morley speaking specifically about beta carotene as the things he seems to favor are retinol sources.

One thing which I do find puzzling is,why when the body dumps stored VA, it has no effect on me being able to have bowel movements (with the body being filled with VA) nor does taking copper on it's own, it only seems to work when I get in a little bit of VA. (Which is a balancing act on it's own when trying to be somewhat functional).

I've been eating low A (between 0-75 IU) for 5 months now, yet I only seem to be getting physically worse; still unsteady difficulty walking, hair thinning and -loss and significant reduction in public hair possibly also eyelashes and brows (I'm starting to feel like a chemo patiënt :s ), cracked lips, teeth keep shortening,fingernails are brittle/completely torn off, very dry skin...when I take off clothes I see these fine white flakes flying around (despite using bodymilk), sometimes I have red spots in my face (histamine reaction possibly), my fat (and maybe water) especially belly&love handles is increasing...I sometimes feel like I'm becoming skinny fat and losing mostly muscle. The fat rolls feel more soft and squishy than they used to before. And what I'd noticed was when I ate mostly tallow, before going low A and switching to coconut oil, my breast became a little bit Fuller and rounder in shape while they now look less attractive again (sad saggy and more conical shaped). So yeah, I feel I'm turning into the worst physical version of myself after already working on everything for a decade. :/

@viktor oh ok. We all make mistakes in trying to do what we think is best for our health/lives at the time and sometimes we unfortunately pay a steep price for it. I've never had a liver eating/high VA habit,nor supplemented it or used such beauty products, yet I ended up here so it was my own action as well. We try to do the best we can, so don't be hard on yourself.

you sound a lot like me! I was just getting fatter and my belly got fat and boobs too and I just thought I looked like a grandma.. dry skin etc... grrr. So I changed it up about a month ago and started to eat mostly raw. Less protein, but lots of raw cheese! Roquefort, which is a delicious raw sheep milk cheese from France, I tolerate sheep milk and goat better than cow.

I had gotten tartar on one place on my teeth this spring after being a lot in the sun, my skin was horrible.. the belly fat etc. I started to think I might have vit K2 deficiency, avoiding all greens too. So I started eating like 100 gram Roquefort every day, raw eggyolks most days, lots of organic salad and veggies raw, for breakfast I do 1 avocado with lots of raw veggies/greens..... and only in the evening cooked legumes just alone or with veggies. No meat or protein with it. And very fast my body started to change! My belly fat is melting, my skin is better, my shape is starting to get beautiful again, boobies getting smaller... I am soooo happy :). At work this weekend one lady I work with asked my age, I said I am 47. She was like.. Whaaat... I thought you were 37?? She was shocked.. That was the best compliment, really, she did not see my wrinkles lol I am the wrinkliest of all! But she said i have this energy, I am so strong, and my shape is so beautiful... I take it! I told her I do yoga 20 min every day and she said she will start doing it too...

So just wanted to share in case you want to try out a mostly raw diet with some cooked legumes if it helps you. I want the soluble fiber but I am careful to not mix it with anything else except fat. Oh, I also started to eat butter again, every day some tbspoons. I am a lot in the sun, I am thinking vitamin A could be a good thing with sun and no fake light, and a bad thing with lots of fake light.. not sure. But I do know light has something to do with the vitamin A cycle. Also in summer there is lots of greens etc around, so would be natural to eat vitamin A/beta carotene then, and not in winter.

PS. the tartar on my teeth went away after a week or two on this regimen! I am pretty sure I was vitamin K2 deficient. My energy is also much better.

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