Western medicine and Accutane = dead end, there's very little help!!

Interesting when I last saw my kinesiologist, he started getting me to go back to some childhood trauma in a visualisation technique, I guess it's with the belief that by entering the trauma you can eliminate it or something.

Why did we do this?

I think he's out of ideas on trying to treat me as a tane victim, I honestly think he doesn't know what to do with Roaccutane side effects. He knows all the things I've tried over the years with no improvement and now wants me to not think of myself as a victim.
Damage is damage is it not, you can't heal a broken leg by wishing it better.....anyway.

I think it's time I went back, the work we do feels like it rejuvenates my brain, almost like it's rewireing it. Very rapid eye movement REM going on during a session.

Typical of all things after tane though is that it doesn't last, it's only temporary but it is good relief none the less.

On 3/24/2017 at 4:29 AM, ACCUiTy_drANE said:

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 [Edited link out]. 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.

On 3/24/2017 at 9:22 AM, hatetane said:

On 3/24/2017 at 4:29 AM, ACCUiTy_drANE said:

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.

I'm confused about progesterone and pregnolone - are they 5-alpha reductase inhibitors or not?
Looks like you have been on the ray pete forum too. There are some clever guys on there.

On 3/24/2017 at 4:29 AM, ACCUiTy_drANE said:

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.

I'm confused about progesterone and pregnolone - are they 5-alpha reductase inhibitors or not?
Looks like you have been on the ray pete forum too. There are some clever guys on there.

Accuity - have you seen this?

http://www.bio.net/mm/neur-sci/2004-August/058929.html

It even has some suggestions towards the end of the article:

If 5AR inhibitors do pose long term risks and you absolutely have to take them, it may be possible to lessen the neurological damage with things like acetyl-l-carnitine, minocycline, l-theanine, taurine, curcumin, green tea (EGCG), CoQ10, nicotinamide/niacinamide, creatine, ketogenic diets, so on and so forth (each of which carries with it its own complicating factors).

They also provide an email - might be worth contacting them.

On 3/23/2017 at 1:32 AM, tryingtohelp2014 said:

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.

See now, this is the danger with making assumptions like that. People believe what you're saying is true, however, i'm 7 years post tane with extremely dry skin and my heart rate is absolutely fine, I don't feel the cold any more than a normal person would, nor do i have joint pain. 

Maybe we will get to try this in the future

http://www.bbc.co.uk/news/health-39354628  

https://m.medicalxpress.com/news/2017-03-peptide-senescent-cells-stamina-fur.html

2 hours ago, Walden Rev said:

https://m.medicalxpress.com/news/2017-03-peptide-senescent-cells-stamina-fur.html

Yep that's the one - it's this bit that peaked my interest :

''seek out and destroy broken-down cells that hamper proper tissue renewal''.

2 hours ago, Justdry said:

Yep that's the one - it's this bit that peaked my interest :

''seek out and destroy broken-down cells that hamper proper tissue renewal''.

Its called:Proxofim( FOXO4-DRI)
If you look for the active ingredientFOXO4-DRI you will find some results.

So the leading scientist is focussed on FOXO

Peter de Keizer received his PhD from Utrecht University Medical Center in 2009 for his work on FOXO transcription factors in tumor suppression. He received his postdoctoral training at the Buck Institute for Research on Aging in Novato, CA, USA on the molecular hallmarks of cellular senescence.
His research focusses on the role of senescence in aging and cancer. Senescence has been causally linked to age-related diseases, but not therapeutic methods exist to remove senescent cells from an organism. His goal is to develop these, something which he dubbed TASC (Targeted Apoptosis of Senescent Cells). His second focus lies on targeting chemoresistance in metastatic cancer. He found certain senescence-associated proteins to be associated with therapy resistance and developed methods to overcome this.
In 2010 he was elected as a fellow of the Dutch Cancer Society (KWF) and in 2014, he was awarded the prestigious Talent Extraordinary Award from the Erasmus University Medical Center.

So i read alot about it.

Basically, he says your body is constantly repairing itself, when you are 65 the damage is more then you can handle.
What happens the damage is when 2 proteins bind to eachother and cause alot of damage in the surrounding tissue. 
What the new medicin does is it disconnect those two proteins, so they cant cause any damage anymore.

In 2-3 year they are going to test it on healthy persons, in about a year it will be on people who are diagnosed with aggresive tumors who only have 6 months to live.
They talked about a topical cream for the hair.
They dont expect any side effects but they cant tell.
What he also mentions alot is the fact that Chemo cause the same two proteins to bind, (same damage as someone who is 65 years old). 
So it will help chemo patients alot (accutane patients).

Hes all over the news in the Netherlands right now and when the buzz is fallen I will pay him a visit so he can test on me voluntary.

http://www.cell.com/cell/fulltext/S0092-8674(17)30246-5

How I understand it, the burden of a continuously build up inflammatory senescent cells in old age causes permanent inflammation and a lot of aging issues. Those cells can't repair itself anymore, so they should kill themself. The mechanism to kill themself actually already began in those senescent cell, but the last step to initiate apoptosis is blocked by FOXO4. FOXO4 binds to p53, so that p53 never is able to reach the mitochrondia (which would destroy the mitochrondia and so initiate apoptosis).

By fixing this broken mechanism, this would free the aging individual of the build up of inflammatory senescent cells and so be effective against some aging issues (which is very visible in the pictures below).

"Senescent cells are permanently withdrawn from the cell cycle and generally develop a persistent pro-inflammatory phenotype, called the senescence-associated secretory phenotype (SASP) (Copp© et al., 2008)."

"Together, these show that after acute damage FOXO4 favors senescence over apoptosis and maintains viability of senescent cells by repressing their apoptosis response."
...
"Together, these results show that by competing with endogenous FOXO4 for p53 binding, FOXO4-DRI disrupts senescence-associated FOXO4/PML/DNA-SCARS and causes nuclear exclusion of active p53."
...
"Together, these data show that FOXO4-DRI potently and selectively reduces the viability of senescent cells by competing with FOXO4-p53 binding, thereby triggering release of active p53 to the cytosol and inducing cell-intrinsic apoptosis through caspase-3/7. This establishes FOXO4-DRI as a genuine inducer of TASC. (targeted apoptosis of senescent cells)."
...
Together, these data indicate that FOXO4-DRI is effective in reducing doxorubicin-induced senescence in vitro and in vivo and in doing so neutralizes the doxorubicin-induced loss in body weight and liver toxicity. Thus, FOXO4-DRI is effective against chemotoxicity.
...
Together, these results indicate that FOXO4-DRI can reduce cellular senescence and counteract hair loss and general frailty in fast-aging XpdTTD/TTD mice.
...
Thus, FOXO4-DRI targets high SASP-expressing senescent cells that have naturally developed in the kidneys of fast-aging XpdTTD/TTD mice and in doing so restores kidney homeostasis.
...
By inducing TASC, FOXO4-DRI may thus be a potent drug to restore loss of health after natural aging and is an attractive option to explore further in the battle against those age-related diseases that are at least in part driven by senescence.

 
 

THC

https://selfhacked.com/2016/04/17/top-11-scientific-health-benefits-pregnenolone-including-drawbacks/#8_Pregnenolone_Increases_

THCthe main active component of marijuana, substantially increases the production of pregnenolone (R).

I am soo Close 2 just don't give a fu*$ anymore and smoke marijuana for My moode! And eat a lot of melons...LOL, love Them! In May 2017 its been over a year since I Saw one of My friends! Old friends now, cause I dont Want too see anybody anymore again! The accutane side effect I could have lived with,,, BUT the accutane side effects AND a lot of scars!! I'll rather have lost a leg ... Sorry

19 hours ago, hatetane said:

I'm confused about progesterone and pregnolone - are they 5-alpha reductase inhibitors or not?
Looks like you have been on the ray pete forum too. There are some clever guys on there. I'm confused about progesterone and pregnolone - are they 5-alpha reductase inhibitors or not?
Looks like you have been on the ray pete forum too. There are some clever guys on there.

Here's a graph that helps explain things better. Pregnenolone is the steroid hormone in which most other steroid hormones come from. Cholesterol is in the initial building block. What you may overlook by focusing on the graph is the fact that pregnenolone is a neurosteroid in and of itself, and crosses the blood-brain-barrier. Back in the day, oral administration was used to treat numerous diseases.

So as you saw, progesterone comes from pregnenolone.

Progesterone ---> dihydroprogesterone ---> tetrahydroprogesterone ---> allopregnanolone (5-alpha reductase assists in these conversions.)

This is why some PFS patients supplement with progesterone. Also, thanks for the link. I will check it out.

@macleodWell, thanks for the reassurance. I genuinely was wondering if I was missing something. I will admit I sometimes spend too much time debating these topics. I always justified it as, "Well, at least when someone Googles this issue they will see the evidence." After all, I was initially introduced to this topic by reading forums myself.

Honestly, I hope you make some progress with one of your doctors. You suggested a lot of sound therapies to him. Unfortunately, he has tunnel vision. Sometimes you have to pay top dollar to seek out a dedicated clinic for your given interest. Here in America, we have Ketamine clinics, (online) LDN clinics, TRT clinics, etc. The alternative is going to a doctor covered by insurance who will likely recommend generic treatments with mediocre/low success rates. I completely share your sentiment that these "prestigious" positions are overrated. I've heard countless people say have had better luck managing their chronic conditions through their own research than going to a doctor. Healthy people do not have the same perspective we do.

Anyone seeing a neurologist, they will likely give two test, a MRI and a EEG. I'd ask for a copy of both reports. If normal maybe try to push for a SPEC scan and site the study showing accutane reduced cerebral blood flow in some cases(similar to the vasculitis someone said they just got diagnosed with). No mater what you tell them it might not go any farther then a MRI and EEG.

Has anyone been to a actual clinic like MAYO and been like look, accutane did this, this and this to me im not getting better and the same thing is happening to other people, FIND IT! Some of us have too many symptoms in common that we need to site for nobody to find anything. I just feel like it needs to be at a big time clinic or university thats more orientated in research and that has the means to look at things deeper.

only thing that has helped my brain is alternative day fasting. libido still fucked and skin still thinning. the alternative day fasting probably thins the skin out even more. But my mood is better and my mind is clearer. what it's worth i guess . sorry guys.

Here is another study showing mean serum zinc levels at 97.94 ug/dl in healthy people.
Its showing zinc metabolism disturbances possibly playing a key role in various types of hair loss.
what they considered significantly lower was 84.33
another takeaway is the 1to1 copper to zinc ratio in a healthy population. copper 96.44 to zinc 97.94
So again what is your serum zinc? Also in respect to your serum copper?
This is worth checking.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870206/

All I can take out of reports that compare ratios is "Metabolism"

You can get tested all you want after tane, you can start taking zinc no problem but you won't be cured.

It begs the question, is our gut health so bad that we just don't absorb or metabolise vitamins/minerals in the same way?

while I'm on, can anyone offer up a couple of ideas on how to treat this inflammation??

Supplement wise I think I know but is there anything else, any drugs? ( other than LDN )
Also does anyone know if there's a way of measuring chronic inflammation? Regardless of where it's taking place in the body, a test that shows it would be so welcome, it would help explain to my doctor what I'm feeling, why my brain feels heavy, why my body feels stiff and sore etc.

26 minutes ago, TrueJustice said:

while I'm on, can anyone offer up a couple of ideas on how to treat this inflammation??

I think sometimes people, including myself might make things more complicated then maybe they actually are.
Im looking at immune dysfunction, connective tissue disorders,gut health, inflammation, bone, joint and muscle problems, skin and hair issues.

Im looking at the big picture, but it starts with simple questions and finding what people have in common.
This question is one that shouldnt be past up so fast, until we can say no, thats not a issue and move on.
So yes I'd like to see what the average serum zinc level is post accutane before writing it off as nothing.

Here is just one quick study that took 2 seconds to pull up when you mention inflammation.

Zinc and its role in age-related inflammation and immune dysfunction.

1 hour ago, guitarman01 said:

I think sometimes people, including myself might make things more complicated then maybe they actually are.
Im looking at immune dysfunction, connective tissue disorders,gut health, inflammation, bone, joint and muscle problems, skin and hair issues.

Im looking at the big picture, but it starts with simple questions and finding what people have in common.
This question is one that shouldnt be past up so fast, until we can say no, thats not a issue and move on.
So yes I'd like to see what the average serum zinc level is post accutane before writing it off as nothing.

Here is just one quick study that took 2 seconds to pull up when you mention inflammation.

Zinc and its role in age-related inflammation and immune dysfunction.

Wong CP¹,Ho E.

Author information

Abstract

Zinc is an essential micronutrient required for many cellular processes, especially for the normal development and function of the immune system. Zinc homeostasis and signaling are critical in immune activation, and an imbalance in zinc homeostasis is associated with the development of chronic diseases. Zinc deficiency causes significant impairment in both adaptive and innate immune responses, and promotes systemic inflammation. The elderly are a population particularly susceptible to zinc deficiency. National surveys indicate that a significant portion of the aged population has inadequate zinc intake, and a decline in zinc status is observed with age. There are remarkable similarities between the hallmarks of zinc deficiency and immunological dysfunction in aged individuals. Both zinc deficiency and the aging process are characterized by impaired immune responses and systemic low grade chronic inflammation. It has been hypothesized that age-related zinc deficiency may be an important factor contributing to immune dysfunction and chronic inflammation during the aging process. In this review, we discuss the effects of zinc status on aging, potential molecular and epigenetic mechanisms contributing to age-related decline in zinc status, and the role of zinc in age-related immune dysfunction and chronic inflammation.

Yeah I didn't mean to be dismissive of your question, by all means, get tests and collect data if you're that way inclined.

Im just at a point where I'm fed up with blood tests, I'm at a point where if someone says it's all to do with thyroid, I'm not even bothering with a test, I'll just assume I need Iodine and get on it. That's why I just ask what are people taking, I'm done with the science - at the end of 10 page reports just tell what you are taking!! That's all I care about.

So in regard to Zinc - take a good quality multivitamin and then it's covered yeah or get on Zinc supplements, then that base is covered!!

Suplements will only go so far yeah, with the damage that Accutane has done it will be a drug of some sort that may still get us out of this mess, perhaps an anti-inflammatory or a antibiotic or we may have to look at Peptides.

Other than that, everything else we already know:

Diet
Sleep
Exercise ( everything from gym to yoga )
mindfulness ( meditation )
Work/Life balance.

and here's a more complicated answer for accutane sides, but maybe with a simpler explanation. in a previous study i posted, it showed how high dose vitamin a might facilitate copper transport and induce DNA damage. Some ideas or theories might be a stretch, but we got to realize if and when we actually find something, something we can treat, Its not going to be in any studies.

Oralisotretinoin(13-cis retinoic acid) is the most effective drug in the treatment of acne and restores all major pathogenetic factors of acne vulgaris.isotretinoinis regarded as a prodrug which after isomerizisation to all-trans-retinoic acid (ATRA) induces apoptosis in cells cultured from human sebaceous glands, meibomian glands, neuroblastoma cells, hypothalamic cells, hippocampus cells, Dalton's lymphoma ascites cells, B16F-10 melanoma cells, and neuronal crest cells and others. By means of translational research this paper provides substantial indirect evidence forisotretinoin's mode of action by upregulation of forkhead box class O (FoxO) transcription factors. FoxOs play a pivotal role in the regulation of androgen receptor transactivation, insulin/insulin like growth factor-1 (IGF-1)-signaling, peroxisome proliferator-activated receptor-I (PPArI)- and liver X receptor-I (LXrI)-mediated lipogenesis, I-catenin signaling, cell proliferation, apoptosis, reactive oxygene homeostasis, innate and acquired immunity, stem cell homeostasis, as well as anti-cancer effects. An accumulating body of evidence suggests that the therapeutic, adverse, teratogenic and chemopreventive effecs ofisotretinoinare all mediated by upregulation of FoxO-mediated gene transcription. These FoxO-driven transcriptional changes of the second response of retinoic acid receptor (RAR)-mediated signaling counterbalance gene expression of acne due to increased growth factor signaling with downregulated nuclear FoxO proteins. The proposed isotretinoinaATRAaRARaFoxO interaction offers intriguing new insights into the mode ofisotretinoinaction and explains most therapeutic, adverse and teratogenic effects ofisotretinoinin the treatment of acne by a common mode of FoxO-mediated transcriptional regulation. PMID:22110774

Modulation of FoxO signaling in human hepatoma cells by exposure to copper or zinc ions.

Effect ofisotretinoinon serum levels of precursor and peripherally derived androgens in patients with acne.

PubMed

Lookingbill, D P; Demers, L M; Tigelaar, R E; Shalita, A R

1988-04-01

Sebaceous glands are stimulated by androgens and can convert them to more active forms.Isotretinoin, however, has a profound inhibitory effect on sebaceous gland size and function. This study evaluated the effect ofisotretinoinon serum levels of precursor and tissue-derived androgens. Twenty-four subjects (15 men and nine women) were treated for 20 weeks with 1 mg/kg/d ofisotretinoin. Serum samples were obtained at baseline, 8, 16, and 24 weeks, and assayed for precursor androgens--total testosterone (TT), free testosterone (free T), dehydroepiandrosterone (DHEA), dehydroepiandrosterone-sulfate (DHEA-S); and tissue androgens--dihydrotestosterone (DHT), and its metabolite, 3 alpha-androstanediol glucuronide (3 alpha-diol G).Isotretinoinhad no meaningful effects on precursor androgens, except for producing an elevation of free T in women. In contrast,isotretinoinproduced depressions in the serum levels of DHT and 3 alpha-diol G in women and in 3 alpha-diol G in men. These decreases are believed to be the result, rather than the cause, of a reduction in the size of the sebaceous glands: The magnitude of the observed decreases may represent the amount of tissue-derived androgens that sebaceous glands normally contribute to the circulating pool. PMID:2965551

http://www.thetimes.co.uk/article/out-damned-spot-pills-k0rrfffnmp2 http://www.ollysfriendshipfoundation.org.uk/about-roaccutan e

http://www.thetimes.co.uk/article/out-damned-spot-pills-k0rrfffnmp2

19 minutes ago, hatetane said:

http://www.thetimes.co.uk/article/out-damned-spot-pills-k0rrfffnmp2 http://www.ollysfriendshipfoundation.org.uk/about-roaccutan e

http://www.thetimes.co.uk/article/out-damned-spot-pills-k0rrfffnmp2

http://www.bbc.co.uk/news/uk-england-kent-27214265

Report you symptoms now if you haven't done so already, especially everyone in the UK.
I have said it before and I am saying it again:
anyone who doesn't report their side effects is a disgrace - you are playing a part in allowing this drug to continue and for other young people like yourselves to be destroyed by this drug.

Not trying to push anything here, you guys know me by now, antisocial chip on my shoulderasshole, but the supplements i have been taking recently (besides my digestive enzymes VeganZyme) are these doTERRA supps. My cousin is a biologist and she actually recommended them to me as she takes them herself. https://doterra.com/US/en/pl/supplements-daily-vitality

I take two of the Mega and CRS a day. Can't say it'll cure the brain, but my body feels healthy-ish, for what its worth.

35 minutes ago, hatetane said:

http://www.thetimes.co.uk/article/out-damned-spot-pills-k0rrfffnmp2 http://www.ollysfriendshipfoundation.org.uk/about-roaccutan e

http://www.thetimes.co.uk/article/out-damned-spot-pills-k0rrfffnmp2

http://www.bbc.co.uk/news/uk-england-kent-27214265

Report you symptoms now if you haven't done so already, especially everyone in the UK.
I have said it before and I am saying it again:
anyone who doesn't report their side effects is a disgrace - you are playing a part in allowing this drug to continue and for other young people like yourselves to be destroyed by this drug.

http://www.bbc.co.uk/news/uk-england-25201642

http://www.bbc.co.uk/news/uk-england-kent-23365784

http://news.bbc.co.uk/newsbeat/hi/health/newsid_8051000/8051355.stm

[Edited link out]

One of these boys was on this forum but I prefer not to highlight his name.

I want to get some numbers from anyone in the uk.
Please let me know if you reported your side effects. It's not to have a go at you but to try and get some idea
about the level of unreported side effects.

Aren't all the side effects known by now?
I'm more into reporting on Doctors and Specialists ignorance or general inability to know what to do with the side effects - that's what needs reporting more than anything but who the hell do you tell that to??

It's the bullshit theory that once you stop taking tane any side effects will go away, that's the lie that needs reporting.