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I just feel like the people who HAVE recovered just don't share their stories because they're off enjoying life now. So all the sufferers are still stuck here without a clue as to what we should do.
As as far as my symptoms go 6 months post tane
Extreme exhaustion (I sleep well over 8 hours and still not well rested)
HAIR LOSS (body wide including arms, legs, armpits, pubic hair (sorry tmi) as far as hair on my head it just seems to be thinning overall
This strange feeling of depersonalization/not being fully in my body
Terrible short term memory
Low body temperature usually waking up in the 97's and remaining at low 98's all day
WAY more sensitive to the cold than I've ever been
Startling easily
Depression/Anhedonia
It's funny.. I don't always have sexual dysfunction.. STILL capable of getting hard (not AS hard, but I'm still able to ejaculate) I think the loss of emotions plays a role in this
ALSO noticed my pupils have been acting very strange since all of this has been happening. They're sometimes HUGE and have trouble staying contracted.
Face/head feels filled with pressure
Voice loss/voice breaks way easier now
Weight gain/fluctuations
Slow digestion and my poops are usually mixed in color (light brown/green with darker spots... thinking this could be a bile issue)
Out of breath easily
Sweat more often
hair feels so dry
ALL I GOT FOR YA PEEPS! Any insights ?
On 3/23/2017 at 4:28 AM, Colinboko said:I just feel like the people who HAVE recovered just don't share their stories because they're off enjoying life now. So all the sufferers are still stuck here without a clue as to what we should do.
As as far as my symptoms go 6 months post tane
Extreme exhaustion (I sleep well over 8 hours and still not well rested)
HAIR LOSS (body wide including arms, legs, armpits, pubic hair (sorry tmi) as far as hair on my head it just seems to be thinning overall
This strange feeling of depersonalization/not being fully in my body
Terrible short term memory
Low body temperature usually waking up in the 97's and remaining at low 98's all day
WAY more sensitive to the cold than I've ever been
Startling easily
Depression/Anhedonia
It's funny.. I don't always have sexual dysfunction.. STILL capable of getting hard (not AS hard, but I'm still able to ejaculate) I think the loss of emotions plays a role in this
ALSO noticed my pupils have been acting very strange since all of this has been happening. They're sometimes HUGE and have trouble staying contracted.
Face/head feels filled with pressure
Voice loss/voice breaks way easier now
Weight gain/fluctuations
Slow digestion and my poops are usually mixed in color (light brown/green with darker spots... thinking this could be a bile issue)
Out of breath easily
Sweat more often
hair feels so dryALL I GOT FOR YA PEEPS! Any insights ?
excellent... need more complete lists like this. lots of thyroid symptoms for sure.
tell me you dont match almost all of these symptoms....
[Edited link out]
Thyroxine is important for both collagen synthesis and matrix metabolism2. Hypothyroidism causes accumulation of glycosaminoglycans (GAGs) in the extracellular matrix, which may, in turn, predispose to tendon calcification15. GAGs are involved in the pathogenesis of carpal tunnel syndrome during hypothyroidism15. Elevation of (GAGs), IL6 and TNF has also been reported in exophtalmos in hyperthyroidism1618.
Tendinopathy can be the presenting complaint in hypothyroidism, and symptomatic relief can be obtained by appropriate management of the primary thyroid deficiency19, while calcific tendinopathy has been associated with thyroid dysfunctions20.
calcified ligaments and tendons
3 hours ago, Colinboko said:I just feel like the people who HAVE recovered just don't share their stories because they're off enjoying life now. So all the sufferers are still stuck here without a clue as to what we should do.
I've stayed in contact with several others who have posted on this forum in the past. None of them have recovered, they have only stopped burdening themselves with the extra stress of trying to find a way out of this pitfall.
This is just the unfortunate fact of the matter.
8 minutes ago, Dubya_B said:I've stayed in contact with several others who have posted on this forum in the past. None of them have recovered, they have only stopped burdening themselves with the extra stress of trying to find a way out of this pitfall.This is just the unfortunate fact of the matter.
Dubya,
What exactly are your symptoms to date?
This research paper is old but the unit of measurement is comparable.
The mean average serum zinc levels in 210 healthy people is 98 ug/dl or mcg/dl.
My lowest was 58, my average is around 74, my highest was 90 ug/dl (only when I was supplementing temporally with up to a whopping 150mg zinc), afterwards it quickly dipped back down to the 70s.
What do you guys got?
you'll have to click the link, cant paste.
https://riordanclinic.org/wp-content/uploads/2014/12/89003621_p1.pdf
1 hour ago, Colinboko said:2 hours ago, tryingtohelp2014 said:excellent... need more complete lists like this. lots of thyroid symptoms for sure.tell me you dont match almost all of these symptoms....
http://hypothyroidmom.com/are-you-living-life-with-thyroid-brain-fog/
I couldn't agree more. I just need some testing done.
In terms of testing:
Had numerous thyroid blood tests all come back in range!!
Im not advising not to get tests but what will you do after being disillusioned with no clear evidence of a thyroid problem is what you've got to ask yourself??
Like me you might decide just to take what everyone else does with thyroid and that's Iodine!!
If anyone knows of anything else to take please let us all know? One thing I will say though is don't report back after 2 days of taking it, you'd be looking at a 6 month trial I'd imagine to see some changes. I'm about 3 months in with no change just so you know.
Im no expert but the other thing that was possibly shattered after tane and something that also regulates hormones is your pituitary gland!! Good luck trying to repair that though!!
21 minutes ago, TrueJustice said:In terms of testing:Had numerous thyroid blood tests all come back in range!!
Im not advising not to get tests but what will you do after being disillusioned with no clear evidence of a thyroid problem is what you've got to ask yourself??Like me you might decide just to take what everyone else does with thyroid and that's Iodine!!
If anyone knows of anything else to take please let us all know? One thing I will say though is don't report back after 2 days of taking it, you'd be looking at a 6 month trial I'd imagine to see some changes. I'm about 3 months in with no change just so you know.Im no expert but the other thing that was possibly shattered after tane and something that also regulates hormones is your pituitary gland!! Good luck trying to repair that though!!
But what exactly were your symptoms? Did you have low body temp? Hair falling out all over your body? Startling easily? Sun sensitivity? My symptoms seem to line up a little too closely with thyroid problems...
I hate to say but your long list is pretty much bang on with what I suffer and I'm 20 years post tane it pains me to say!
Dry in the face and hair, sun sensitivity is a big issue - I wear sunglasses even when it's cloudy.
Tired all the time and can't get a good nights sleep, I've just started Tryptophan that I hope will help.
depression is a big prob and pressure in head which I relate back to systemic inflammation.
None of these prob will go away by themselves hence the experiments continue.
Many people don't wish to hang around on forum as it all becomes too much for them. I can't do that, I'd like to find a solution and I like to hear what others have to say. After 20 years I'm very resilient you could say!!
Is itthe thyroid we need to address - dont know?
Is it the gut - don't know?
Is it TBI- don't know?
Is it a liver issue - don't know?
Without adoubt you will be experimenting in trying to find a solution!!
2 minutes ago, TrueJustice said:I hate to say but your long list is pretty much bang on with what I suffer and I'm 20 years post tane it pains me to say!
Dry in the face and hair, sun sensitivity is a big issue - I wear sunglasses even when it's cloudy.
Tired all the time and can't get a good nights sleep, I've just started Tryptophan that I hope will help.
depression is a big prob and pressure in head which I relate back to systemic inflammation.
None of these prob will go away by themselves hence the experiments continue.Many people don't wish to hang around on forum as it all becomes too much for them. I can't do that, I'd like to find a solution and I like to hear what others have to say. After 20 years I'm very resilient you could say!!
In all honesty I'm not extremely dry in my face. And I also have gotten some smaller blemishes here and there
13 minutes ago, Colinboko said:But what exactly were your symptoms? Did you have low body temp? Hair falling out all over your body? Startling easily? Sun sensitivity? My symptoms seem to line up a little too closely with thyroid problems...
Your symptoms could line up with whatever you want it to be. and by you I mean everyone. Lets say you take iodine and there is a perceived benefit. thats great, then you get all your blood test back, your tsh, t3, t4 and they are as normal as normal can be. So just realize the benefit you feel might not be related to the underlying medical condition you thought you might have that you were trying to treat.
BTW, if there was one test that everyone has had on here and thats been looked at since day 1, it would be thyroid.
More people are coming back with very low TSH numbers, the exact opposite of hypothyroidism. Thats when they look at your t3 and t4 blood test for any indication of hyperthyroidism. you probably dont have that either.
so your going to take iodine for your thyroid thats possibly already over stimulated. This will raise your heart rate. then your body gets used to the higher amount of iodine so you start to crash when you dont take it. eventually you might actually really have a thyroid problem.
Always a chance im wrong though. Btw have you had a serum zinc test?
3 minutes ago, guitarman01 said:Your symptoms could line up with whatever you want it to be. and by you I mean everyone. Lets say you take iodine and there is a perceived benefit. thats great, then you get all your blood test back, your tsh, t3, t4 and they are as normal as normal can be. So just realize the benefit you feel might not be related to the underlying medical condition you thought you might have that you were trying to treat.BTW, if there was one test that everyone has had on here and thats been looked at since day 1, it would be thyroid.
More people are coming back with very low TSH numbers, the exact opposite of hypothyroidism. Thats when they look at your t3 and t4 blood test for any indication of hyperthyroidism. you probably dont have that either.so your going to take iodine for your thyroid thats possibly already over stimulated. This will raise your heart rate. then your body gets used to the higher amount of iodine so you start to crash when you dont take it. eventually you might actually really have a thyroid problem.
Always a chance im wrong though. Btw have you had a serum zinc test?
I don't understand why there is so much negativity? I haven't heard of many people posting about low body temperature on here ever, which is definitely an indicator of a slowed metabolism. So like I'd rather get tested anyways. Vitamin A has been proven to slow down your thyroid function....?
2 minutes ago, Colinboko said:8 minutes ago, guitarman01 said:Your symptoms could line up with whatever you want it to be. and by you I mean everyone. Lets say you take iodine and there is a perceived benefit. thats great, then you get all your blood test back, your tsh, t3, t4 and they are as normal as normal can be. So just realize the benefit you feel might not be related to the underlying medical condition you thought you might have that you were trying to treat.BTW, if there was one test that everyone has had on here and thats been looked at since day 1, it would be thyroid.
More people are coming back with very low TSH numbers, the exact opposite of hypothyroidism. Thats when they look at your t3 and t4 blood test for any indication of hyperthyroidism. you probably dont have that either.so your going to take iodine for your thyroid thats possibly already over stimulated. This will raise your heart rate. then your body gets used to the higher amount of iodine so you start to crash when you dont take it. eventually you might actually really have a thyroid problem.
Always a chance im wrong though. Btw have you had a serum zinc test?I don't understand why there is so much negativity? I haven't heard of many people posting about low body temperature on here ever, which is definitely an indicator of a slowed metabolism. So like I'd rather get tested anyways. Vitamin A has been proven to slow down your thyroid function....?
im not negative at all my friend. Just honest. Yes get tested.
1 hour ago, Colinboko said:1 hour ago, guitarman01 said:Your symptoms could line up with whatever you want it to be. and by you I mean everyone. Lets say you take iodine and there is a perceived benefit. thats great, then you get all your blood test back, your tsh, t3, t4 and they are as normal as normal can be. So just realize the benefit you feel might not be related to the underlying medical condition you thought you might have that you were trying to treat.BTW, if there was one test that everyone has had on here and thats been looked at since day 1, it would be thyroid.
More people are coming back with very low TSH numbers, the exact opposite of hypothyroidism. Thats when they look at your t3 and t4 blood test for any indication of hyperthyroidism. you probably dont have that either.so your going to take iodine for your thyroid thats possibly already over stimulated. This will raise your heart rate. then your body gets used to the higher amount of iodine so you start to crash when you dont take it. eventually you might actually really have a thyroid problem.
Always a chance im wrong though. Btw have you had a serum zinc test?
I don't understand why there is so much negativity? I haven't heard of many people posting about low body temperature on here ever, which is definitely an indicator of a slowed metabolism. So like I'd rather get tested anyways. Vitamin A has been proven to slow down your thyroid function....?
if you have a fitbit... this can track your heart rate all day ... i would bet everyone with long term dry skin and joint pain have low tolerance to cold and a low heart rate and body temp.
Anecdotal... in the comment section of this article...
http://www.forefronthealth.com/vitamin-a-and-hypothyroidism/
Anyone know or have a theory as to why many of us can't consume omega-3's without sides getting worse? I have talked to many people, and I'm included in this, who if they consume omega-3's have worsened side effects. For me, my rosacea gets worse and my dry eyes become extremely severe rather quickly. Omega-3's are supposed to be healthy and anti-inflammatory? What about it would be aggravating to us?
Has anyone got any experience or knowledge about glycine - PFS guys have been talking about it on the Ray Pete forum
1 hour ago, hatetane said:https://draxe.com/glycine/Has anyone got any experience or knowledge about glycine - PFS guys have been talking about it on the Ray Pete forum
Been taking 15g of glycine everyday for about two months now. I'm sure it's helping with overall health and all but I haven't noticed anything. At least for me it's not anything incredible. Makes water taste great, though!
2 hours ago, hatetane said:https://draxe.com/glycine/
Has anyone got any experience or knowledge about glycine - PFS guys have been talking about it on the Ray Pete forum
Yeah, I've been interested in trying glycine because one of a few supplements capable of boosting neurosteroid (allopregnanolone) production. This is addition to caffeine, progesterone, 5a-DHP, pregnenolone, and niacinamide. I've talked to many post-Accutane sufferers who say they never felt the need for caffeine until they incurred problems from Accutane. Now, it feels like a missing component. I always knew there was something more to it than "hurr durr dopamine" and that article really helped make everything click.
There was also recently a new research article posted about post-Finasteride syndrome. Admittedly, it's really strange. As a treatment option, it recommends supplementing with DHT if you're right-handed and supplementing with progesterone or dihydroprogesterone if you're left-handed. I'm not joking. My critique is even if you supplement with these hormones, additional conversions (dependent on 5-alpha reductase) have to take place. So how do we know supplementing with DHT alone would help, for example? Also, it fails to acknowledge secondary effects that would take place due to neurosteroid deprivation (decreased neurogenesis, demyelination). So reinstating what's deficient is not necessarily enough. Having read the full-text artcile, here is something that puzzled me:
"Relevant for our topic, a person may present either a neuroendocrine profile that is dependent/modulated by sexual hormones (in this case being susceptible to develop adverse effects to administration of antihormonal compounds) or, contrary, a neuroendocrine profile that is dependent rather by sexual pheromones (per-sons who usually would be not affected by antihormonal compounds)." So we obviously fit the criteria for the first neuroendocrine profile. All the more reason to not mess with aromatase inhibitors! However, I have no clue what this is trying to say.
Here's a little more. Sorry, I cannot post more in case it is behind a paywall.
Accuity, you are a better doctor than my Dr. and he's really smart He's really not a bad guy, he's young, and he curses, completely agrees with me 100% that accutane can and has probably messed us up, but hates when i try to present any scientific studies pointing him in the direction where I feel I'm the most compromised...He wants me to just present to him symptoms, which is hard considering the plethora of them, but when I do he either writes them off as unlikely (going off my blood tests), under the vague umbrella of depression, or he says he has these symptoms himself. It's almost as if he is trying to dissuade me from any research whatsoever and even brought up the H word today. Nevertheless, I did succeed in getting a neurology referral. He even told me he himself suffers from depression and treats himself. What in the actual fuck? I like the guy, I really do, but is he going off some script to just undermine any case that I have of the actual damage Accutane has caused myself and others? I hit a roadblock today, but we'll see what I can come up with the Neurologist...I have so many symptoms relating to hypermetabolism of the brain and ischemic damage from my TIA 8 years ago. Opthamology results surprisingly all passed even though I'm still blind at night, have visual snow, blue entoptic phenomenon, persistent afterimages, shit ton of floaters (which they see too). This really is the perfect drug. Kudos Roche. GG..
2 hours ago, macleod said:Insert post.
Haha, this is why I cannot do doctors. I know exactly what you mean. I have had some of the nicest physician assistants and doctors, but whenever you bring a symptom that cannot be seen, critical thought shuts off. The potential underlying biological actions that can contribute to psychiatric problems are literally never considered. Lots of people have hard lives and never develop persistent mental problems, so that should tell you there are obvious underlying problems that leave people feeling "off" or "depressed" no matter how positively they try to think. I am in contact with a few PFS guys now, I am told their doctors say: "When are you going to let this go so you can get better?"
And you're telling me your doctor actually has a mental issue and still cannot understand what you may be going through. You're not even appealing to emotion; you're trying to give sources. That shows you just can't win. I was just arguing with a doctor online today. You can skim my responses, but TELL me I'm the unreasonable one here! Link.
TL;DR: Doctor basically says "As a doctor, PFS doesn't exist. Here is one study proving it." I shoot back a researcher and doctor who disagree, and spit out 700 studies back. He says, "Bad, flawed studies. And you appealed to authority." I say: "Isn't that what you did? And no study is perfect, dude. This is why we take into account the full-picture."
But that's the thing. When you're a doctor, you're surrounded by like-minded people. You become consumed with dogma, which shuts off critical-thinking for SOME (too many). I don't care if you're a doctor: People who spend their lives studying the biological mechanisms of these drugs disagree with you for evidence-based reasons. That drug that you prescribed to 1,000 patients, and 6 of your colleagues take, can and does ruin peoples' lives.
I have a tight-knit Facebook group for long-term Accutane side effects (80 or so members). And none of them are helped by antidepressants. So why is that the go-to treatment? Because dogma, tradition. Doctors have no idea what else to do. I do my best to give suggestions. I have had tremendous success in treating some symptoms, and mixed results treating others. If we're gonna solve this, we need the real critical thinkers looking into this. No doctor is going to solve this on the spot when they have 49 other patients to see that day.
5 hours ago, helpmeoutbuddies11 said:Anyone know or have a theory as to why many of us can't consume omega-3's without sides getting worse? I have talked to many people, and I'm included in this, who if they consume omega-3's have worsened side effects. For me, my rosacea gets worse and my dry eyes become extremely severe rather quickly. Omega-3's are supposed to be healthy and anti-inflammatory? What about it would be aggravating to us?
You should look at Lamarr1986 posts, he suffered from rosacea and inflamed dry eyes. Also, I am not sure how many but the omega 3's goes way back to suffers from 90's early 2000's. I posted a long time ago, I think even on this thread about the relationship.
4 minutes ago, ACCUiTy_drANE said:but whenever you bring a symptom that cannot be seen, critical thought shuts off. The potential underlying biological actions that can contribute to psychiatric problems are literally never considered.I am told their doctors say: "When are you going to let this go so you can get better?"
This exactly! This is so mind numbing. it's almost as if they are reading from a manual.
I told him I wasn't completely objected to treating my depression, but first I want to find the cause and the underlying issue, and still attempt to try conservative alternative methods. He asked me like what kind? I said that I had read about low dose ketamine + hyperbaric o2 therapy, this doctor in wisconsin is doing it and getting good results. He's like "nah, no one is really gonna prescribe ketamine." I was like, what about just hyperbaric o2 then? "mmm no, those are just doing essentially the same thing any other treatment does. scratching at the surface, not actually treating" What about LDN then? I'm reading promising things online. Then he stops for a second, "yea i have another patient who comes in here with 600 other things, and now with his prescribed placebo LDN, he's feeling much better." Then I had to put him in check. Look, I don't care about that nerd. I don't want to be here any more than you do, I'd much rather go back to my life of rap music, smoking pot, and dating girls. And then it just goes back and forth. It's a combination of he tells me what I want to hear, he acknowledges underlying issues, but wants to do things by some bs standard protocol, even though this is clearly a special case. I dunno, the older I get, the more I start to see through some of these so called societal positions of influence and prestige. Let's hope for better luck with the Neuro, I know there are a couple of good guys in this area.
1 hour ago, ACCUiTy_drANE said:That shows you just can't win. I was just arguing with a doctor online today. You can skim my responses, but TELL me I'm the unreasonable one here! Link.
Hey, trust me on this one, I'm gonna recommend laying off. I read the discussion and your logic is sound, but that person is purposely trying to refute everything you are saying just for the sake of refuting. I don't think it's a doctor. It could be a smart student, or maybe just a pre med guy, but to me it looks as if they are playing a game. An unwinnable game. If you do choose to play, at least do so in the mindset that you are honing your skills.