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The beginning of a long journey
Symptoms, side effects, and toxicity
Have been suffering from worsening health ever since taking 2 months of isotretinoin approx Spring 2021. So about two years ago. I knew there was a link between accutane and my health, which led me on different forums/groups/subreddits until I found the eBook by Grant, which led me here.
These are the most notable symptoms of current excess vA toxicity (what I had while on isotretinoin), some recently when detoxing:
- Nightmares
- I usually don't have nightmares. These are some out of the world, sweat and wake up levels of nightmares.
- Headaches
- the usual dry skin/dry lips/nosebleeds
Issues I noticed a few months out. I was not aware of any long-term problems at this time:
- Tinnitus
- When I touch my neck on the right side I feel a rumbling in my ear. I now believe this is some sort of calcification. There is a calcification in my sinus revealed by an xray (Fall 2021)
- Hair loss
The summer last year I had taken too much of an edible, which may have exacerbated my current issues. I also took PEP, an anti-HIV drug to be on the safe side after a potential exposure, which I now think was unnecessary, but my anxiety was quite high at the time. These two things may have affected my body in unknown ways. I now regard doctors with a scrutinizing eye and realize the inherent toxicity in many drugs. To borrow a concept from thermo: I think of things as systems, where our body is a system that takes in food, water, sunlight, air, etc. and expels certain products. A healthy body at my age doesn't randomly start having these problems unless something bad has been added or not enough of something is there. (Toxicity and deficiency)
Current chronic issues that made me really realize something was wrong:
- Gluten sensitivity (I ate a currywurst, bread + sausage. Intense upper left quadrant abdominal pain afterwards. Obviously the issue was not the sausage because I can still eat meat.). Diarrhea afterwards.
- Still having some pain when eating various foods, but not as intense as gluten. White rice + beef seem to have no reactions. Things as simple as millet and cucumber are prompting reactions.
I'm also noticing these additional physical issues at the moment:
- Fingernail recession
- Gum recession
- Joint cracking
- Skin lesions
- White hairs on my knees and testicles
- Missing patches of hair on my legs
- Small amounts of oil floating on the water after stools. Stools look normal when my diet is normal.
- Foamy urine?
Mentally I feel a bit more confused, and it takes me longer to find the right word. I find myself walking with no direction, aimlessly, only to then realize what I was looking for. I also might put a pot on the stove and forget.
Here are some other misc symptoms:
- One day I had really sweet saliva in my mouth. Blood sugar was around 99 after eating.
- Vertical nail ridges (seem fairly common in most people as I've been looking at a lot of people's nails lately, but when I was healthy my nails were completely smooth. Not sure if this is a sign of vD deficiency)
- I notice I lose a lot of weight at night when sleeping. Like 1-1.5kg.
Blood Tests:
- Kidneys seem fine. eGFR > 90, though decreased a bit in recent years. Not sure how much of that is an actual decrease versus the eGFR formula changing.
- Liver enzymes ALT/AST were around 20 before isotretinoin, now around 30-40ish
- ANA Titer 1:640, increased rapidly these past few months. My body is obviously destroying itself.
- According to my Apple Watch, my Heart Rate Variability averages 45ms. I've noticed it has gone as low as 25ms when I travel am stressed. My understanding so far of this is that 45ms is the average HRV of a 50 year old, and a low HRV indicates your body is stressed/needing to repair itself from something. Respiration, sleep, other factors seem normal.
Factors I am tracking
I used to never look at my poop. I thought it was disgusting. Only when you become desperate for a solution do you start doing things once unthinkable. Needles in my arm for blood tests don't even phase me anymore.
I'm using the following factors and metrics for my health:
- A weight scale
- I only log my weight during these times: after I poop, after I wake up, and before I wake up. You would think you don't lose much weight when sleeping, but I'm noticing as much as 1.5kg. I am not tracking water consumption but it obviously will cause my weight to fluctuate quite a lot. What I might be able to do here is to drink a consistent amount, enough so that I am hydrated. I trust my body will excrete any unnecessary water.
- Apple Watch Series 8 (diff. over series 6, 7 is the deviation from average body temperature when sleeping. Not sure how useful this will be, might be useful for women + ovulation)
- Useful for sleep, exercise, etc. Kind of expensive but getting better is a huge priority for me.
- Food diary
- Looking at my poop and observing it
- Symptom Tracker (any time I have some pain, dry feeling, etc. I'm going to log it)
Recovery Factors
I noticed that my hair grew back a little bit in August and September when I spent a lot more time in the sun. I read a study linking increased autoimmune diseases to decreased sunlight exposure. My vD levels have been around 24-29 for at least 1.5 years, but were much higher when I was younger.
Given vA stored in fat, my increasing symptoms may be related to me going from 125 -> 115 pounds over the past few months as well. I need to eat a lot. Like 2700-3000 cal per days in order to get back to 125, ideally >130 so that I can be healthier. If food helps detox, then more food in = more toxins out.
I think it's a given that exercising moderately is better than being sedentary. At the moment I have to avoid going too heavy on weights because I may have a heightened risk of osteoporosis. Mainly push-ups, unloaded squats, pull-ups, walking.
Two cooking implements which can be very helpful are an advanced rice cooker and a pressure cooker. I'd recommend the Zojirushi 5 cup one, about 120 USD or so. Good rice cookers have a removable steam lid because the boiling of rice releases starches along with the steam that will gunk up the lid. Pressure cooker for making large chunks of meat like chuck roast taste better.
So once again:
- Eat a lot while avoiding vA
- Sunlight exposure
- Moderate exercise
Other important factors:
- Sleep well
- reduce stress (I noticed League of Legends was pointlessly making me sweat/increase my heart rate, so I quit)
- Track metrics!
- Weight, poop, exercise, you name it
Indicators of Health
- If my hair loss stops
- Thoughts on causes: autoimmune, oil deficiency, vD deficiency
- Will rub oils on hair near hairline for the next few months. If it doesn't grow back (it's winter so little sun) then it's not because of an oil deficiency.
- low vA diet + sunlight. Unfortunately I'm not going to try and single out a factor because I want to recover my health the fastest. So I'm going to do both of these and see if there is any hair regrowth in the summer.
- Thoughts on causes: autoimmune, oil deficiency, vD deficiency
- If my nails/gums stop receding and grow back
- Autoimmune/vA/cellular damage or lack of oils
- Will see if rubbing oils on my right hand but not my left does anything
- Might be related to sunlight exposure too. Will keep note.
- If my white hairs go away
- If I have less brain fog
- If my vision gets better
- If my skin lesions go away
Follow-up Medical Tests
Rheum appointment. Positive ANA is very unspecific, they would have to run more tests to see which part of the body is being destroyed. I don't see myself taking steroids or things that suppress my immune system unless it starts becoming unbearable. I hope this diet will lead me to greener pastures.
Might get scoped to see what's up with any GI issues. Scoping may have some side effects though, will have to research on whether or not it's worth it. I wonder if those pill cameras are available. It can be helpful to have an official diagnosis just for medical/insurance/employment reasons.
Do some noninvasive scans just to check my liver, pancreas, etc. I am quite worried about these two organs because of the pain I've been feeling when eating, the occasional sweet saliva, and digestive problems I've been having lately.
At the present moment I have no mental symptoms of depression or anxiety. I called a friend and he told me I was talking like a dead person. I still have a life to live, a career to build, and a family to spend time with. Overall my body is healthy and I am able to move around just fine, but there are slight factors making me miserable and indicative of long-term issues which prompt me to take corrective action.
I am wishing everyone good health for the new year and wish everyone a speedy recovery.
Food, diet, avoiding vA detox
vA detox is what I am most worried about. I don't know if my body will be able to handle the dumping of large amounts of vA into my system.
Food is of course important. I still need to research more factors like beta-carotene conversion factors and have a better grasp of all the forms of vA. Having a routine diet of >2000 calories is absolutely the first thing that I must do. Tentatively, this looks like eating 320g of rice and 500g of beef every day. I then probably should add on some more rice, beef, potatoes, or other acceptable food to get me to 3000.
Some questions I am asking myself right now are:
- If I stew my beef with aromatics such as ginger, garlic, bay leaf, etc., will this increase the vA?
- What can I really eat? Cucumber and millet are starting to make me feel uncomfortable. Perhaps I should try to perfect a diet of just rice + stewed beef first, then slowly research other foods.
Hopefully if I have time and when I'm back in the States this summer, I'll raise some gerbils or mice on a low vA diet.
Proof of Symptoms
Calcification (I don't have the xray w/ me right now)
Nail recession.
Test result.
Obviously some things like headaches, nightmares, mental stuff are not so easy to prove, white hairs are not so easy to photograph. But I just wanted to attach a few examples of proof so that people know I'm being serious about this.
I read a lot of articles about autoimmune diseases, proposed cures like "raw vegan diets," "carnivore diets," etc. and so on. But many people are not fully introspective enough to find what may be the root cause. You can tell it in the writing and the attention to detail they have.
After reading Grant's book, I think it's the only thing that perfectly explains my symptoms. He comes from a scientific background and is offering his books for free. He's not trying to make a profit, but rather trying to prove a point.
Some might argue that too many diseases are trying to be pinned on vA, though there are scientific studies that make it seem plausible, if not highly likely, for vA causing things as varied as osteoporosis, hair loss, nail/gum recession, autoimmune indicators, celiac's, etc. For me, it is a very obvious cause and effect. I took isotretinoin (a form of vA), and now I have health issues matching many symptoms.
I don't think I'm in a state of extreme toxicity, but I don't think I would've randomly gotten better either had I gone down the immunosuppressant route. I'm also attaching evidence here so that you all know this is proof. If I get better or worse I will upload more proof. The evidence is what matters.
Uploaded files:
Hi @jzuc37 welcome to the forum. I’m sorry to hear about your declining health with isotretinoin, it really is a drug that causes issues. I agree with your general conclusions about the toxicity of drugs.
I started my vA detox 4 years ago and have got rid of all my vA toxicity symptoms. However, I’ve had collateral damage from the detox, which I now think is due to a choline deficiency and/or the triggering of secondary porphyria. I advise anyone starting the vA detox diet now to reduce vA slowly rather than all at once and to make sure you are ingesting the RDA of choline. If this means including eggs then don’t worry about the small amount of vA in eggs, the choline is super important. It’s really important imo to keep a nutrient dense diet. I advise using Cronometer to monitor this.
Edit: nightmares can be associated with low B6, which can be worsened by vA toxicity. I personally supplement B6 but some people don’t tolerate it. Toxicities and deficiencies go hand in hand.
Thanks for the heads-up. I saw your post but didn't read through all of it yet. I might keep an egg or two along with a bite of other foods/spices in my diet as well until I do more research. I did see Grant's post about people on carbs possibly running out of B vitamins/Cauliflower effects. If there are low-risk, well-tolerated vitamins then I would consider adding small amounts to my diet.
At the moment I'm very hesitant to do any sort of supplementation outside of normal, whole foods. I was reading Why we Sleep, and encountered a diagram of different spiderwebs while using drugs. I then researched it and came upon this page, https://en.wikipedia.org/wiki/Effect_of_psychoactive_drugs_on_animals, and this quote stuck out to me:
Coffee berry borers seem to be unaffected by caffeine, in that their feeding rate did not change when they were given leaves sprayed with caffeine solution. It was concluded that those beetles have adapted to caffeine.[10] This study was further developed by changing the solvent for caffeine. Although aqueous caffeine solutions had indeed no effect on the beetles, oleate emulsions of caffeine did inhibit their feeding, suggesting that even if certain insects have adjusted to some caffeine forms, they can be tricked by changing minor details, such as the drug solvent.[11]
So supplementation can be risky. Nicotinamide is low risk but nicotinic acid is high risk. There's a German vitamin/mineral supplementation risk assessment (250ish pages) that I haven't gotten to reading through yet. Attached are some excerpts. It's called "verwendung_von_vitaminen_in_lebensmitteln" and you can find it here/google translate it later: https://www.bfr.bund.de/cm/350/verwendung_von_vitaminen_in_lebensmitteln.pdf
Uploaded files:
I also have the "receding fingernails" problem, and receding gums, which I associate with Vitamin A toxicity. In the picture you shared, it looks like you are focusing on the receding cuticle at the base of the nail, but what I also see in your photo is onycholysis, which is the separation of the tip of the nail from the nail bed, which causes a pale color at the leading edge of the nail. I seem to have both of those issues myself, along with the vertical ridging you mentioned, and nail beading that appears occasionally. The vertical ridging and nail beading have diminished on a low Vitamin A diet, and I think the cuticle problem and onycholysis are slowly improving as well...very slowly though.
Most of my symptoms came on or worsened after going onto a low Vitamin A diet, but then gradually improved, so don't get discouraged if your symptoms worsen initially...it is probably a sign that your body is getting rid of peripheral stores of Vitamin A.
Oh, I hadn't noticed that as a thing. Thanks for pointing it out. I don't notice and nail beading personally. As a temporarily ameliorative measure I'll try moisturizing the nail bed more/oil pulling for teeth/gums.
I really like how well you’ve documented and structured everything, interested to see how everything goes.