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11 hours ago, MideonNViscera said:Hi everyone,
I've been reading quite a bit of this thread. Obviously I am here because Accutane damaged me. The thing is, my problems are localized entirely to my skin, while it seems most people here are having much tougher issues. I'm going to tell you what it's done to me. I have been off Accutane for 7 months and the problems seem to be increasing.
My lips are destroyed. They are constantly peeling, constantly dry, but more importantly there's massive inflammation and swelling around them at all times. I am essentially disfigured now. Sometimes even drinking water burns them. Sometimes they burn for seemingly no reason at all!
My skin is dry, but that's not all. Besides the wrinkles and prematurely aged look, I also now suddenly get dermatitis, psoriasis, and eczema. I wake up with random spots on me, and can get dermatitis even from my jacket.
I am always itchy, especially the neck and chest. My neck skin is definitely thin, and starting to sag. I am only 36.
My hair is bone dry of course as well.
When I wake up there's imprints from my sheets or pillow cases that last an hour. Even putting my hands in my pockets leaves marks on my hands for that long. If I scratch an itch the red mark lasts the same amount of time.
It's clear to me that my skin doesn't function anymore. It can't condition or protect itself. I look like I've aged a decade in 7 months.
Of course, I didn't even have acne and had a very terrible derm, but that's another story and not helpful to repeat.
My question to you guys is, has anybody been able to fix these relatively (not to me but in the scope of what could have happened) minor issues? Most of the chatter I see involves mental health and digestive issues.
I really don't want to go around the rest of my life with fucked up lips. My self confidence is already destroyed, and now I'm basically suicidal because I know nobody is ever going to admit what happened to me, let alone actually help me. I really don't want to watch myself deteriorate anymore.
Did you go see a couple dermatologists to get there opinion ?
Has anybody got there Thyroid numbers checked, I have read that if the thyroids tests seem normal then try to test Reverse T3 and see if it is raised. My was high, meaning there could be potential hypothyroidism ?
Well, my original derm just flat out said it's impossible to be because of Accutane because it's out of my system within "a couple weeks".
Tuesday I see a new derm, but I don't have a lot of hope because it seems none of them are willing to talk poorly about Accutane. If they won't accept the cause, they can't really help fix it.
10 hours ago, MideonNViscera said:Well, my original derm just flat out said it's impossible to be because of Accutane because it's out of my system within "a couple weeks".
Tuesday I see a new derm, but I don't have a lot of hope because it seems none of them are willing to talk poorly about Accutane. If they won't accept the cause, they can't really help fix it.
Ask them if its out of my system why dont I get acne anymore. That pretty much stumps them
It could be argued it has indeed left the system long ago
That the reason we dont get acne any more is that it has dried out the sebaceous glands hence less oil.
Would have been good thoughif this was all worked out 40 years ago before it was ever put on the market - unfortunately weve all just been guinea pigs really
I found this week what caused my issue (severe left shoulder pain): supplementing with 4000 IU (twice the max daily intake recommended by the European Food Safety Authority, check this PDF)vitamin D-3 (was also taking 100 Mcg K-2 MK-7)causeshypercalcemia especially if you are taking dairy often and also some crap almond milk with enriched calcium, which was my case, tricalcium phosphate was the name of the poison in the list of ingredients.
My problem was described in the ultrasound test as "calcific tendinitis of the subscapularis tendon. Supraspinatus tendinopathy". Since this is a veeeeeeeeeery long explanation I'll just leave this link here with my full comment on that, posted in another forum.
Now that I have stopped withthe D-3 for good (not K-2, I'll take this one and double the current dose to 200 Mcg, also with 10 mg lutein and 2 mg zeaxanthin, good for the eyes) and cut dairy and nut-milk, and added a few stuff more like type II collagen, boron, vitamin C and looking to increase magnesium consumption, things will resolve in a while. So far70-80% of the pain/discomfort is gone. 3 months from todayI'll do more blood tests and if possible another ultrasound to check things again. When I stopped taking D-3 for a yearmy levels plummeted to 30's (note: my first test measured 26, before I started taking for the 1st time).
Ideal levels, however, are achieved with 2000 IU and within a few months, I remember I once took and 90 days later D levels were in the 40's. With an increase in testosterone, which always happens due to D-3 increased levels in the blood.
Back in March, 1 month before I started taking 4000, it was already higher than ever the total T, but free T I always feel it's still low, 8.9 within a lab range that goes to 24. SHBG is always high, too, within the lab range. LH within lab range, yet low, and prolactin always high (20's, for a man it should be below 13). Estradiol it should be less than 33, yet numbers like 10, 13, are low for me (note: low estrogen means low libido, too).
It looks like a lot of stuff needs to be tried and changed to continue checking if Accutane hasn't killed sex drive and messed with hormones forever. Permanent sexual dysfunction seems to be the case according to a few reports. I also measured low DHT.
On 11/2/2020 at 2:37 AM, MideonNViscera said:Well my question is fairly simple. Has anybody ever figured out how to improve the skin related permanent side effects?
Have youchecked your thyroid levels, your TSH maybe within range but its important to check the Revers T3 numbers ?
Has anybody properly checked there thyroid levels, most would go to the doctor and check TSH and if within range they would say your thyroid is functioning properly. They main component to test is the reverse T3 and see if it is high, people with Hypothyrodism have hight Reverse T3 levels but have normal TSH levels which can indicate we have very similar symtpoms with Hypothyroidism ?
On 11/1/2020 at 3:37 PM, MideonNViscera said:Well my question is fairly simple. Has anybody ever figured out how to improve the skin related permanent side effects?
Copper bisglycinate 2mg per day seemed to greatly help skin thinning issues for me (mental ones too).. certainly had a headache with that a few years ago. Gelatin could be helpful too by providing aminos needed for collagen (also contains a bit of copper). Also IIRC vitamin C plays a role there too.
Had recurrent angular cheilitis(corners of mouth disintegrating) although onset was a few years post tane, I only managed to clear up by applying bioactive yoghurt to the areas and leaving it for a while, perhaps overnight for a couple of days.. would reoccur once a year or so and get progressively worse till treated, I believe it stopped coming back after the 4th occurrence/treatment. Don't know if that would be helpful for your situ.. but just in case.
When I was on a vitamin A depletion diet I wanted to try speed up the process of elimination and decided to experiment with high dose taurine due to the high possibility that it binds to retinol for excretion. I decided to do this after experimenting with high dose taurine and glycine for some other purpose (easy to add bulk powder to coffee) I found that my lips became sore and were peeling in the way they would whilst on accutane.. this continued for a few days and then lips returned to normal. I had used both plenty prior to this but at lower doses. I believe the effect was initially achieved with around 6g taurine and 10g glycine(I'm sure I did this more than once per day but caution as there is an upper limit to the amount of glycine that can be taken safely without causing toxicity issues and I believe after some experimentation I found the high dose taurine to be the key factor). Have taken taurine 5g 3 times a day upon occasion(at a later date) trying to achieve other goals(reversing fibrosis/lowering ammonia) and consider that a safe dose for the short term.
Digestion/gut issues can play a role with skin issues too (mal-absorbtion of nutrients needed for skin health, sibo), small things like a good multi-b might help to sure up any deficiency there..
Just some ideas, hope something is helpful and you manage to get a handle on it quickly.
On 11/2/2020 at 9:33 AM, MideonNViscera said:I don't have any thought on that, but I will let you know what they say at my appointment tomorrow. Hopefully they at least listen.
Sorry Pido, I don't have anything else to add. This dermatologist didn't even let me speak.
12 hours ago, Warrah said:Copper bisglycinate 2mg per day seemed to greatly help skin thinning issues for me (mental ones too).. certainly had a headache with that a few years ago. Gelatin could be helpful too by providing aminos needed for collagen (also contains a bit of copper). Also IIRC vitamin C plays a role there too.
Had recurrent angular cheilitis(corners of mouth disintegrating) although onset was a few years post tane, I only managed to clear up by applying bioactive yoghurt to the areas and leaving it for a while, perhaps overnight for a couple of days.. would reoccur once a year or so and get progressively worse till treated, I believe it stopped coming back after the 4th occurrence/treatment. Don't know if that would be helpful for your situ.. but just in case.
When I was on a vitamin A depletion diet I wanted to try speed up the process of elimination and decided to experiment with high dose taurine due to the high possibility that it binds to retinol for excretion. I decided to do this after experimenting with high dose taurine and glycine for some other purpose (easy to add bulk powder to coffee) I found that my lips became sore and were peeling in the way they would whilst on accutane.. this continued for a few days and then lips returned to normal. I had used both plenty prior to this but at lower doses. I believe the effect was initially achieved with around 6g taurine and 10g glycine(I'm sure I did this more than once per day but caution as there is an upper limit to the amount of glycine that can be taken safely without causing toxicity issues and I believe after some experimentation I found the high dose taurine to be the key factor). Have taken taurine 5g 3 times a day upon occasion(at a later date) trying to achieve other goals(reversing fibrosis/lowering ammonia) and consider that a safe dose for the short term.
Digestion/gut issues can play a role with skin issues too (mal-absorbtion of nutrients needed for skin health, sibo), small things like a good multi-b might help to sure up any deficiency there..
Just some ideas, hope something is helpful and you manage to get a handle on it quickly.
Thanks a lot for all of that. You're the most helpful person I have found.
On 11/4/2020 at 5:31 AM, Warrah said:When I was on a vitamin A depletion diet I wanted to try speed up the process of elimination and decided to experiment with high dose taurine due to the high possibility that it binds to retinol for excretion. I decided to do this after experimenting with high dose taurine and glycine for some other purpose
Hey @Warrah How long did you make on the low VA diet?
2 years tomorrow for me, and still seeing positive progress. Depleting stored VA from liver and fat tissues takes a long time. Supplements I continue to experiment with(part of VA excretion pathways): Alli-B1, Vit K, Taurine, and Molybdenum.
I guess no one wants to follow the activation path with supplementing?
You can take all the B vitamins or any vitamin you want, doesnt mean itll necessarily be working correctly all the time, sometimes it will, other times it wont.I recently found an issue with Vit B2 in particular and had to have some corrections and adjustments done anatomically to help activate it. B2 plays a major role in stomach acid production amongst other things.
I cant be the only one surely who has to factor this in post tane....just saying
See a good kinesiologist who knows how to connect all the dots!!
On 11/3/2020 at 6:29 PM, Ronnie99 said:Have youchecked your thyroid levels, your TSH maybe within range but its important to check the Revers T3 numbers ?
Has anybody properly checked there thyroid levels, most would go to the doctor and check TSH and if within range they would say your thyroid is functioning properly. They main component to test is the reverse T3 and see if it is high, people with Hypothyrodism have hight Reverse T3 levels but have normal TSH levels which can indicate we have very similar symtpoms with Hypothyroidism ?
Thanks for this info. Ill enquire about this test via my GP
Love working with kinesiologist but even they would encourage still getting blood tests etc via the GP
The dry hair and fatigue could be thyroid related....
5 hours ago, TrueJustice said:Thanks for this info. Ill enquire about this test via my GP
Love working with kinesiologist but even they would encourage still getting blood tests etc via the GP
The dry hair and fatigue could be thyroid related....
Does a kinesiologist deal with the endocrine system specifically HPA Axis ?
Yes they do. I thought that was my issue when I read about HPA dysfunction, we did some correcting about 12 months ago but definitely not my main issue
Kinesiologist can only do so much in the way of stress etc, if your home life sucks or job sucks for example and yourestressed all the time, its up to the individual to manage that. I only make this point because cortisol and stress lvls are a critical component to managing HPA axis
But yes, if they diagnose dysfunction they can definitely help out, help adrenals etc
My biggest obstacle is still with gut - cant completely correct dysfunction and still get acid reflux. Tane at this stage has permanently altered my gut, I would never have admitted this 4years ago but after seeing everyone from gastroenterologist to kinesiologist and not being able to fix it,what else can I conclude....
On 11/3/2020 at 9:37 AM, Perene said:I found this week what caused my issue (severe left shoulder pain): supplementing with 4000 IU (twice the max daily intake recommended by the European Food Safety Authority, check this PDF)vitamin D-3 (was also taking 100 Mcg K-2 MK-7)causeshypercalcemia especially if you are taking dairy often and also some crap almond milk with enriched calcium, which was my case, tricalcium phosphate was the name of the poison in the list of ingredients.
My problem was described in the ultrasound test as "calcific tendinitis of the subscapularis tendon. Supraspinatus tendinopathy". Since this is a veeeeeeeeeery long explanation I'll just leave this link here with my full comment on that, posted in another forum.
Now that I have stopped withthe D-3 for good (not K-2, I'll take this one and double the current dose to 200 Mcg, also with 10 mg lutein and 2 mg zeaxanthin, good for the eyes) and cut dairy and nut-milk, and added a few stuff more like type II collagen, boron, vitamin C and looking to increase magnesium consumption, things will resolve in a while. So far70-80% of the pain/discomfort is gone. 3 months from todayI'll do more blood tests and if possible another ultrasound to check things again. When I stopped taking D-3 for a yearmy levels plummeted to 30's (note: my first test measured 26, before I started taking for the 1st time).
Ideal levels, however, are achieved with 2000 IU and within a few months, I remember I once took and 90 days later D levels were in the 40's. With an increase in testosterone, which always happens due to D-3 increased levels in the blood.
Back in March, 1 month before I started taking 4000, it was already higher than ever the total T, but free T I always feel it's still low, 8.9 within a lab range that goes to 24. SHBG is always high, too, within the lab range. LH within lab range, yet low, and prolactin always high (20's, for a man it should be below 13). Estradiol it should be less than 33, yet numbers like 10, 13, are low for me (note: low estrogen means low libido, too).
It looks like a lot of stuff needs to be tried and changed to continue checking if Accutane hasn't killed sex drive and messed with hormones forever. Permanent sexual dysfunction seems to be the case according to a few reports. I also measured low DHT.
I sometimes wonder how safe it is tohave normal vitamin D levels now after accutane treatment ....is low D acting as a defence mechanism or a balancing act? Or obsorption issue.
I've never taken a lot of vitamin D yet I'm calcified.
On 11/3/2020 at 9:37 AM, Perene said:
Anyone here tried Methylene Blue?
there are alot of discussions about at longecity, feels pretty good. Got my confidence and verbal fluency back.
also some studies showed that it should repair the skin making it thicker and add more water to it, permanent change. Its dirt cheap.
8 hours ago, TrueJustice said:I kinda know what you mean by feeling calcified - why we feel like an 80 year old
But what is at play here??Justjoints andligaments or entire skeletal system affected?
Has anyone gone to see an orthopaedic specialist to get some insight?( bone specialist )
Probably itstarts off being too dry and joints get stuffed, then vitamin A not working or imbalanced with vitamin D. A culmination seems to be possible.
At play may be advanced degeneration to all systems.
I saw an orthopaedic and he suggested stretching exercises but I already stretch constantly.
16 hours ago, TrueJustice said:Pls elaborate on this?
Im seeing that you give this to pets when I google it. Whats it targeting in us specifically?
thanks
So it produces ATP (your energie, basically everything runs on ATP) and it supports the Mitochondria.
Read the links below, if you are interested DM me.
https://selfhacked.com/blog/methylene-blue-the-cheapest-cognitive-enhancer/
https://www.longecity.org/forum/topic/51982-methylene-blue-dosing-and-products/
Methylene Blue as Electron Donor
Low-dose methylene blue stimulates mitochondrial respiration by donating electrons to the electron transport chain. This is possible by a unique auto oxidizing redox chemical property. Methylene blue is unique among chemicals for several important reasons. Foremost is the auto oxidizing property that allows methylene blue at low concentrations to form a redox equilibrium by cycling electrons (i.e., serving as both an electron donor and acceptor). This property permits the cycling of electrons from chemicals inside the mitochondrial matrix to electron transport proteins in mitochondria. These transport proteins act as acceptors for electrons donated by methylene blue in mitochondria. The final acceptor of electrons in the respiratory chain is oxygen, which is obtained from oxyhemoglobin transported in the circulation. Molecular oxygen becomes reduced to water in a reaction catalyzed by the mitochondrial enzyme cytochrome oxidase (Complex IV, cytochrome c oxidase). The electron transport chain is coupled with the biochemical process of oxidative phosphorylation, which leads to increased oxygen consumption and the formation of ATP from ADP (Figure1). Under normal physiological conditions the electrons that enter the electron transport chain come from electron donor molecules such as NADH and FADH2. These molecules derive from the Krebs cycle conversion of the food we eat. Methylene blue at low concentrations serves as another source of electrons for the electron transport chain that is part of mitochondrial respiration, leading to increased cytochrome oxidase activity and oxygen consumption (Riha et al., 2005;Wen et al., 2011;Rojas et al., 2012a;Rodriguez et al., 2014).