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Does anyone else still have occasional skin oiliness? That's what makes me believe it has nothing to do with accutane still being in my body. Like yeah I'm not an oil slick like before but I'm average now. Not too dry, and not too oily. I'm assuming now my immune just kills the acne bacteria before it can even form into a cyst or big zit. Because I still get acne on my face occasionally, but they die off sooo quickly. Just like my mosquito bites don't welt anymore. Idk this whole immune system angle is so interesting.
23 hours ago, macleod said:Just got some of my hormone tests back. Doc is concerned and wants to do more tests. 2nd test in a row low T and FSH.
Sex Hormone Binding 24.0 nmol/L 16.5 - 55.9 nmol/L (Range)
Testosterone 185 ng/dL 348 - 1197 ng/dL
LH 3.7 mIU/mL 1.7 - 8.6 mIU/mL Follicle Stimulating Hormone 0.8 mIU/mL 1.5 - 12.4 mIU/mL
You gotta go on TRT. You have extremely low T and your body is not reacting to it, not trying to produce any. You guys need to understand that. Get your hormones tested. In all likeliness, most of you have low T and need to be treated.
This should be the most crucial part to address here.
16 hours ago, AccuNate said:The thing I was thinking about most at the moment was about the potential detox of the liver from the accutane that is said to still reside in the body.
I don't know the entire process of vitamin A metabolism, but I know that Accutane is simply a metabolite of vitamin A that every human should have in his/her body in trace amounts. The half-life of Accutane (13-cis retinoic acid) is under 30 hours. It is chemically impossible for Accutane to convert (back) into retinol. I point this out because I have heard it stated that retinol can stay in the liver for prolonged periods of time. Accutane and retinoic acid are basically stuck the way they are and can only turn into oxo-isotretinoin and oxo-retinoic-acid, and leave the body in a timely matter.
The cause of persistent side effects are obviously anyone's guess, but I don't see any evidence that Accutane is still in our bodies in significant amounts. Rather, any of the following could be taking place: Hypothyroidism, hypogonadism, other hormone related issues, brain damage, immune system changes, stem cell changes, prolonged telomerase downregulation (body-wide consequences), depression as a disease (whatever that means), schizophrenia spectrum disorder (given how many of us have the negative symptoms). The list goes on. A drug does not need to be active to cause issues. Once a disease process begins, many cellular and genetic processes are altered from a former state.
52 minutes ago, Kynarr said:You gotta go on TRT. You have extremely low T and your body is not reacting to it, not trying to produce any. You guys need to understand that. Get your hormones tested. In all likeliness, most of you have low T and need to be treated.
I agree it is a good idea to manage any issue as it is found. Those who have a blood test showing irregular testosterone or thyroid levels are (ironically) fortunate to have something revealed to them to treat. Tomorrow, I have a thorough testosterone and thyroid blood test scheduled. Living in a state with outright insane medical laws, I have to travel to a different state (upstate NY to PA) to actually have them done, even with a doctor's order! I will post my results when I have them.
I just talked to a derm in Australia via skype he bluntly said we don't use isotretinoin in our practice he stated we don't know the long term outcome of these patients. That's coming from a @$@(ing derm I think that about says it all.
Yet they had this stuff out like candy to unsuspecting teenagers and young adults often might I add ruining there lives in the process . At this point in my life I'm pissed off at every allopathic doctor in the world , because in reality they gave us a controlled poisoning but I never got the worst side effects until years later. It saddens the heart .
As a young man I was traumatized by this poison losing half my hair in a month . I will never forget the injustice done to me.
On 7/6/2017 at 4:12 PM, TrueJustice said:In one sentence, what is the test called??
I cant find it amongst all the info,
I'd like to get this one done.
[Edited link out]
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Depending on what country you live in you might need to check with your local doctors on how to order this, or if they know of a similar test forACHR Ganglionic neuronal antibody. This could be primary care, Neurologist, rheumatologist, or gastroenterologist, who ever you think you'dhave the easiest time convincing. This can deal with gastric motility so maybe the gastroenterologist,being you've had a extensive workup there. You could call around and ask. I would just verify the cpt codes of the tests first, to make sure your insurancewill cover it.
Have any of you who sent emails off regarding the reporting of side effects etc received any responses?
I'm assuming not as no one has posted anything!?
So the Govt and TGA are both quite happy to continue the controlled poisoning......as I thought.
All too predictable I'm afraid.
just going to post this test before I forget myself. There is a chance this could be abnormal. This could fit a profile
Used in diagnosis of disorders related to the nervous system
Extremely high levels of catecholamines (also known as catecholamine toxicity) can occur incentral nervous systemtrauma due to stimulation and/or damage ofnucleiin thebrainstem, in particular those nuclei affecting thesympathetic nervous system.
it looks similar to carcinoid syndrome such as facial flushing and aggression
High levels of catecholamines can also be caused bymonoamine oxidase A(MAO-A) deficiency. As MAO-A is one of the enzymes responsible for degradation of these neurotransmitters,
Catecholamines
https://www.labcorp.com/test-menu/21991/catecholamines-fractionated-plasma
- Adrenalin, Plasma
- Dopamine, Plasma
- Epinephrine, Plasma
- Noradrenaline, Plasma
- Norepinephrine, Plasma
On 7/7/2017 at 10:01 AM, guitarman01 said:[Edited link out]
[Edited link out]
Depending on what country you live in you might need to check with your local doctors on how to order this, or if they know of a similar test forACHR Ganglionic neuronal antibody. This could be primary care, Neurologist, rheumatologist, or gastroenterologist, who ever you think you'dhave the easiest time convincing. This can deal with gastric motility so maybe the gastroenterologist,being you've had a extensive workup there. You could call around and ask. I would just verify the cpt codes of the tests first, to make sure your insurancewill cover it.
Is it just a blood test they are doing for this?
12 hours ago, Kynarr said:You gotta go on TRT. You have extremely low T and your body is not reacting to it, not trying to produce any. You guys need to understand that. Get your hormones tested. In all likeliness, most of you have low T and need to be treated.This should be the most crucial part to address here.
I know I know, we will be discussing it soon. Hopefully I can take care of this sooner than later as I'm not getting any younger. Wasted my entire 20's living like this. This is a step in the right direction for me, and fortunately I have ONE of my doctors persistence and understanding that obviously something is inherently wrong.
I have more to say on the subject, but I don't want to start ranting, I'm too upset. Let's just get these tests done and knock it out of the park. We got this guys.
6 hours ago, macleod said:I know I know, we will be discussing it soon. Hopefully I can take care of this sooner than later as I'm not getting any younger. Wasted my entire 20's living like this. This is a step in the right direction for me, and fortunately I have ONE of my doctors persistence and understanding that obviously something is inherently wrong.I have more to say on the subject, but I don't want to start ranting, I'm too upset. Let's just get these tests done and knock it out of the park. We got this guys.
Word of advice, go straight for injections. I do subQ Enanthate at 80mg weekly at the moment. I've increased my T to over 800 most recently. Androgel will fail you. Don't go on it.
This is the one problem we know most of us have, that we can address. I'll report my story soon, but I'm finally starting to get better. I doubt it will cure every issue, but it's a damn good start.
Hey guy! Good newssort of. One of the biggest issues I have had so far is chronic daily headaches and now muscle fatigue/weakness. After multiple visits to the doctors and seeing a neurologist, they think it might be Idiopathic Intracranial Hypertension. High doses of Vitamin A derivatives acne medication (Accutane) have been known to cause this. I have a lumbar puncture scheduled for next week to know for sure, but I feel like I'm finally getting somewhere. If this is the case, the good news is that 1) it's not life threatening (although it can cause loss of vision of not treated) 2) can be treated through medication or CSF drainage
This one may explain the chronic headaches and fatigue two of my biggest symptoms!
Also, a lot of people here talk about the benefits of cannabis oil. I was surprised to read this because for the past couple of months I have been smoking weed with high levels of THC and it has been the only thing to alleviate the pain and make my body feel "normal" albeit sometimes I overdo it and get the "high" effect. Keep in mind, I never smoked weed before, but after these crazy side effects I was willing to try anything that wasn't another toxic medication. Granted, I am also fortunate enough to live in Portland where weed is legal.
Another side effect that that I had was dry, extremely itchy scalp. I went to the dermatologist and they said I have Sebhoric Dermatitis and I was prescribed two daily anti-dandruff shampoos and Clobetasol Propionate Topical solution that has helped tremendously !
Anyways, my advice is keep going to the doctor for them to figure out what's wrong and treat the symptoms. What you have are medical conditions that can be treated. There's still a science to this, and I know a lot of us try to go down the natureopathy or supplemental route, but after reading all these posts I realize a lot of it is a placebo with no long term results.
My advise is take care of yourself mentally, as my biggest obstacle is always the sense of hopelessness through all this, which I'm sure we all experience. Keep going to the doctor. There is medication out there to treat these chronic long term affects.
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Evidence are from abundant clinical case reports uncovering the association between retinoid treatment and depressive symptoms.
In humans, such maladaptive changes in the HPA axis after excessive RA treatment or vitamin A consumption may set the stage for stress-related neuropsychiatric disorders. The rapid reversal by mifepristone may hence be of interest for the development of therapeutic options for HPA-related aspects of depression. Finally, the above changes could be rapidly normalized by treatment with GR antagonist mifepristone.
https://en.wikipedia.org/wiki/Mifepristone
Wow. It's all here.
And the references listed...there are so many.
These Chinese scientists actually found the link.
On 7/8/2017 at 7:09 AM, macleod said:[Edited link out]
Evidence are from abundant clinical case reports uncovering the association between retinoid treatment and depressive symptoms.
In humans, such maladaptive changes in the HPA axis after excessive RA treatment or vitamin A consumption may set the stage for stress-related neuropsychiatric disorders. The rapid reversal by mifepristone may hence be of interest for the development of therapeutic options for HPA-related aspects of depression. Finally, the above changes could be rapidly normalized by treatment with GR antagonist mifepristone.
https://en.wikipedia.org/wiki/Mifepristone
Wow. It's all here.
And the references listed...there are so many.
These Chinese scientists actually found the link.
Great find sir!!
19 hours ago, TrueJustice said:Have any of you who sent emails off regarding the reporting of side effects etc received any responses?
I'm assuming not as no one has posted anything!?
So the Govt and TGA are both quite happy to continue the controlled poisoning......as I thought.
All too predictable I'm afraid.
A few of us who wrote to the European Medicines Agency received responses. Their replies basically amounted to "We will take your statements regarding Ro/Accutane into consideration." They also stated the review of the drug is still ongoing.
...Not much, but it's better than nothing.
@macleodGood to know you found something that might be treatable. There was a guy who posted here long ago, Babis, who lost much of his pituitary function after Accutane. He said he felt good again after starting HRT for various hormone deficiencies. There's hope for you.
.
Was just looking at some possible associations here. Could you say that Accutane is organic? Just a supra exposure to it, or way beyond the normal limits. So what happened or what continues to happen is still part of an organic process that has just been altered because of such extreme exposure? Organic meaning if found or corrected in time this altered course could be reversed, the scariest thing to me if its not found in time, some things might not be so reversible anymore.
A hypothetical role for vitamin K2 in the endocrine and exocrine aspects of dental caries
March 2015
http://www.sciencedirect.com/science/article/pii/S0306987715000328
New opportunities for dental research, particularly in the fields of neuroscience and endocrinology will emerge. The role of the hypothalamus portion of the brain cannot be underestimated.
Currently, the traditional theory of dental caries considers only the oral environment and does not recognize any significant role for the brain. The healthy tooth, however, has a centrifugal fluid flow to nourish and cleanse it. This is moderated by the hypothalamus/parotid axis which signals the endocrine portion of the parotid glands.
Menaquinones are stored in several tissues of the body. Some of the highest concentrations are in the pancreas and the salivary glands[39]. There is a close relationship between both of these exocrine/endocrine glands through the hypothalamus.
Vitamin K2has only begun to be studied
On 7/7/2017 at 3:17 AM, TrueJustice said:Is it just a blood test they are doing for this?
yes its just a blood test.
Looking at Autoimmune Dysautonomia again, another disorder caused by this is
spasticity,
Spasticityis a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait.Spasticityis usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.
This can be caused from a organic process as well, for example copper dysregulation.
I might look into getting full genetic testing of all atp7a and atp7b genes as well.
Based on what I know of everyone's symptoms including my own, I believe you guys have a 50/50 chance of testing positive for this.
Test ID: DYS1
Autoimmune Dysautonomia Evaluation, Serum
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This is what could lead to a lawsuit and I think it would be relatively easy to prove with enough numbers.
This isnt in the pamphlet im sure.
This is what could spark a actual study that could get to the root of what might be going on. That there might be something sitting on the top of all these altered processes or functions.
Its the simplest test in a sense, that might have significant meaning.