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21 hours ago, Anna Nim said:

Watching and waiting for your response. Every Single One of us should respond to the MHRA inquiry questions. It has taken YEARS for it to get this much government attention. LESS Men may become hurt if you speak up. Something outside of our own misery for a change. 

 https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad  

I don't see how people mentioning listed, proven and well known side effects will do anything.  

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6 hours ago, Calcified said:

I don't see how people mentioning listed, proven and well known side effects will do anything.  

Calcified,

They are seeking the public's information. There are simply Not Enough Reports of Sexual Sides and Depression/Suicide for them to take it serious enough. It is not 'proven' enough..clearly. Not a single of my son's Drs have ever treated an ISO patient and simply said he did not have ED & refused to do blood work. Not enough people report their issues to the FDA, MHRA, etc. Every male on this site needs to spend 15 min on this! Then you all can go back to endlessly discussing supplements and erections. This inquiry is not a magic bullet. I know too well the limitations of this inquiry. That being said, I am thinking of this in the same way as the Abortion Laws are being chipped away in the USA. It has taken decades, but now there are more and more restrictions and paperwork, etc.

This has been YEARS in the making. YEARS. This movement has been pushed by grieving Mothers of injured and dead children. They are (only) considering more checklists and steps and warnings. More warnings are helpful. More of our VOICES on record may lead to other countries redistricting it. 

Take the time to help someone else. It is what we have. They are only going on for a few months! 

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@Anna Nim Honestly if it just dried the skin we wouldn't need a specialist to prescribe it. Its a last case scenario drug and prescribed in smaller dosages now under the Australasian college of dermatology. 

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17 hours ago, Calcified said:

@Anna Nim Honestly if it just dried the skin we wouldn't need a specialist to prescribe it. Its a last case scenario drug and prescribed in smaller dosages now under the Australasian college of dermatology. 

Data matters. What happens in the UK may spread to other places. Every affected person on this thread should fIll out the survey! ONLY 5 QUESTIONS! Then we can go back to spending hours discussing cures and supplements.

In much of the world it is NOT being used as a "Last Case".  The USA does not have warnings for the sexual sides, it seems given out like candy. My recommendation is save for over 18 year olds, only after 6-9 months of documented other medications (at least two of them oral), etc. I mean, this shit should not even be given to death row inmates..but here we are..

Here is my second letter I sent months ago.. I am however going to revise and re-submit for their new survey. I am a English teacher-so if anyone needs help with their statement. HMU! 

MHRA,

 I am writing in regards to the upcoming inquiry regarding Roaccutane/Accutane/Isotretinoin as a concerned parent. I firmly believe this is the most dangerous drug on the market today. No amount of blood work, monitoring, or expanded PIP's will make this drug safe enough for the bodies and brains of our young people. My previously entirely healthy, happy son has been damaged permanently by this drug and it should be taken off the market. 

 

Side effects of this drug are grossly under-reported. Because of this, the public believes it is not as dangerous as it is. The term "side effects" does not do justice to the horrors this drug causes. Permanent brain fog, permanent sexual issues, permanent vision issues, permanent depression and permanent joint pain, triggering of autoimmune diseases and cascading health issues from the gut/brain absorption are caused by this brain-damaging chemotherapy-type drug. If the public knew that the risk of PERMANENT damage was as high as it is, then few would take it. In fact, sheer disbelief and denial over how bad this drug is is what leads to its continued presence on the market. Surely, the government would not allow a drug that is this bad on the market for 35 years, right? Knowing what I know now, it is unbelievable that this is still on the market.

My beautiful, only son, my only child, took (Ro)Accutane for about 6 months two years ago and seemed to do okay with normal side effects (dry skin, bloody nose, etc). I now realize that it stunted his growth. He is no taller than myself or his father, despite having very tall brothers and uncles on both sides of the family. He also has had and some other issues that I now realize is likely from the drug, although I did not realize it at the time. My Doctor had told us that there was a "very small risk" of growth stunting, depression, dry skin and not to get pregnant. Any paperwork would have been dismissed as, "All drugs have side effects." How wrong I was.

 The real trouble started when his acne returned. I thought that a short second course would be appropriate, especially since his first round was "successful". In July 2019, he started taking 80 mg a day. Two and a half months into his course, he came to me and told me that he noticed something wrong with his penis. He stopped taking it THAT day. Now, almost four months later he still has raised testicles (unsure if they are shrunken or simply higher), Peyronie's Disease (curvature), his penis has rotated on axis, and has a possible decrease in size of penis. He previously reported excessive post-orgasm exhaustion, issues with rebound rate, decreased sensitivity and libido issues as well. 

 As his mother, I should not know this much about his sexual functioning. Imagine how scared he had to be to come to his mother about this! I am still awaiting the results of complete blood work checking his hormone levels. Although, I have discovered due to this drug damaging your pituitary gland, that even if he is lucky enough to have 'normal' blood work, the hormones may not be uptaked into the brain. I have personally spoke to almost a dozen other men with permanent sexual issues from this drug, some of them decades afterwards. I have also spoken to people with other permanent issues decades later.

 

People find it hard to believe my son has so many issues from a legal drug. It seems impossible, until you realize how common this is. There are Facebook groups with thousands of members suffering from side effects. It is an open secret. My son has ongoing joint pain, changes to the texture of his hair (because it is a chemotherapy-type drug), sleeping issues, ongoing low energy, and stomach issues. He lost weight; a lot of it. He is 1.55 meters and only 60 kg, despite my attempts to fatten him up. His stomach is bothered by almost everything he eats. My son is worried his hair is thinning, and I think he is right. Worse, he has developed light sensitivity, decreased vision issues and appears to have some sort of blind spot at night in the center of his vision. A trip to a regular ophthalmologist shows no issues, we will be seeing a neurologist ophthalmologist when I can get him in, but I have little hope doctors can do anything. They do not seem to do anything after this drug damages the body and are in denial. The dermatologist wipes their hand of you, the specialists are in denial and the patient is doomed. 

 My son also became very, very depressed on this drug. He and I talked about it, his doctor talked about it. I watched as he became negative, irritable and depressed-but yet, the Doctor continued to prescribe it. It was not until he had been off the medication for a few weeks that he realized just how depressed he was. We thought we were aware of the effects of this drug, we were paying attention and looking for signs, yet my son was floored at how much better he felt off of it. That is terrifying. No one realized how bad it was. 

 In regards to the suicide risk; suicides are not due to the oft-quoted "predisposition to depression" mindset. If so, you would think simply getting off the drug when your depression gets too much, and monitoring by concerned, loving parents and mindful doctors would stop it. But it is not the case, this drug literally changes the very way a person thinks. It induces psychosis and irrational thinking without warning.

 Do not underestimate the silent epidemic of young men suffering from permanent erectile dysfunction, testicular pain, genital numbness, lack of ability to orgasm, and libido as part of the, "Isotretinoin Suicides". The effect of a young man losing their sexual functioning absolutely causes suicide. Due to the type of nerve or brain damage to the sexual organs/part of brain, doctors are little help. Many suicides from sexual or other permanent issues caused by this dangerous drug, but they occur months and years later out of sheer desperation. 

 Money makes the world go around, but at the cost of our young people's bodies and minds. This drug is far more dangerous than realized. While not everyone suffers permanent side effects, I feel that no one escapes unscathed. The damage is cumulative. No amount of regulation will make this safe. None. It is like asking, "How much rat poison is safe?" The answer is none. 

 Please take action to save other children. 

 Respectfully, 

Colette Ann

 

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Oh, the agony and anguish of 15 minutes filling out a form. If I spend that much time performing an altruistic act, what's in it for me?

That's 15 fewer minutes in life to contemplate which obscure RAR antagonist will sit on a shelf between the quercetin and rick simpson oil in my cabinet of failed treatments.

 

https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad

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Survey done!!!

I dunno, all these surveys just to combat a chronic Candida problem....

Tell the fuckers to report the findings this time unlike the previous 5 surveys over the last 20 years pls - who would know the outcome from those?

thanks 

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56 minutes ago, TrueJustice said:

Survey done!!!

I dunno, all these surveys just to combat a chronic Candida problem....

Tell the fuckers to report the findings this time unlike the previous 5 surveys over the last 20 years pls - who would know the outcome from those?

thanks 

Hey, DYK that you can ask to be kept informed of the outcome of this. They have written me back about my son's story..and I am not done with them yet. DYK, Only 25 people reported sexual side effects in the UK this year...25. I call BS. They do not believe that the effects are as bad as they are, the other sides, as we well know are being blown off. This inquiry has taken years to come to this point. They are looking at more guidelines and warnings on this drug in the UK. I KNOW that is not enough, I really do, but numbers matter. This information might be used for other countries to become aware, etc, etc. I know it is a impossible mountain. But regardless, we ALL should report ALL of our issues to the MHRA (and the FDA in the USA). 

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19 hours ago, Calcified said:

@Anna Nim ok I did it, honestly why some specialists still give out high dosages is beyond my comprehension.

Thanks sweetie. I know it is limited in scope, but numbers matter. 

I believe my son was given an overdose, when I look up his weight and dose. IDK if it would matter to an attorney, as sexual sides are not even RECOGNIZED in the USA, and no doctor will believe us or certainly write about it. His dose was WAY too high. My son feels bad for asking for the increase, and I feel bad for pushing to get us into a Dr. Ruined our lives. He is struggling with attention span and brain power, which I know is this poison.. 

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2 hours ago, Anna Nim said:

Thanks sweetie. I know it is limited in scope, but numbers matter. 

I believe my son was given an overdose, when I look up his weight and dose. IDK if it would matter to an attorney, as sexual sides are not even RECOGNIZED in the USA, and no doctor will believe us or certainly write about it. His dose was WAY too high. My son feels bad for asking for the increase, and I feel bad for pushing to get us into a Dr. Ruined our lives. He is struggling with attention span and brain power, which I know is this poison.. 

how did you find out what dose was needed for weight and height ?

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I have seen dosage recommendations in various places. I am not quite sure what the 'legal' amounts are. You height is irrelevant. Regardless of dose, this is TOXIC and UNSAFE at any dose. ANY dose is dangerous. Here a 40 page booklet from the FDA's own website. https://www.accessdata.fda.gov/drugsatfda_docs/label/2008/018662s059lbl.pdf

(Anyone reading this, please ensure you fill out the MHRA survey regarding sexual side effects and suicide, regardless if you even took it they want to hear from the people) 

DOSAGE AND ADMINISTRATION Accutane should be administered with a meal (see PRECAUTIONS: Information for Patients). The recommended dosage range for Accutane is 0.5 to 1.0 mg/kg/day given in two divided doses with food for 15 to 20 weeks. In studies comparing 0.1, 0.5, and 1.0 mg/kg/day,8 it was found that all dosages provided initial clearing of disease, but there was a greater need for retreatment with the lower dosages. During treatment, the dose may be adjusted according to response of the disease and/or the appearance of clinical side effects — some of which may be dose related. Adult patients whose disease is very severe with scarring or is primarily manifested on the trunk may require dose adjustments up to 2.0 mg/kg/day, as tolerated. Failure to take Accutane with food will significantly decrease absorption. Before upward dose adjustments are made, the patients should be questioned about their compliance with food instructions. (p. 30).

It also has a chart for weight/dosing (would not copy right). My son was simply given too much, but ANY is too much IMHO...

Anna Nim

 

 

 

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On 11/23/2020 at 3:02 PM, Quinc said:

Yes I think there are ways to lower your enzymes with things like vitamin E and milk thistle, but I think the unique function of cholestryamine as it binds to the bile acids and removes substances like isotretinoin is key here. In the case I posted above, the ALT level for the girl was reduced with cholestryamine, but why would a medicine to lower cholesterol and bind to bile acids lower ALT? There’s a connection there between isotretinoin metabolites and elevated enzymes. I think trying it is worth it 


Thinking back to 1998 when I was on tane, from memory 4-6 month treatment, the one test you had to do was a Liver test. I tested ok so continued with my course 

Let us know if you have success using Cholestryamine 

Its not just another supplement from what I’ve read on it, could be very helpful for tane victims 

 

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Hello everyone. Anyone else think all, (yes all), of the accutane side effects are autoimmune related? That is my current theory based on how accutane triggered major hairloss in me which later got diagnosed as Lichen Planopilaris. I've also noticed how the skin rashes, stomach problems, and so forth that other tane survivors have are usually autoimmune.

 

Anyways, I just wanted to report that I am having success treating my specific accutane side effect using immuno suppressor medicaiton. 

 

I will add that if I had ED from accutane, which luckily I do not, I would most definitely try immuno suppressor medicaitons in a attempt to see if autoimmunity is playing a factor. Just wanted to throw that out there. Some medications that I would hypothetically try would be Tofacitinib, Apremilast, Actos, or hydroxycholchine. Once again, I don't have ED from accutane, but that would be my first protocol to try out if I did. 

 

Back to my issue- My accutane induced lichen planopilaris is getting better through the use of Apremilast at 45mg. It's been only 1 week on it but my scalp is no longer itchy. I still have to wait and see if the shed decreases, but I have hopes.

 

~Gunnersup

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This loosely held together community seems split on either adrenal problems, or widespread autoimmunity.

What worked for me was immuno-suppressants, but I'm sure everyone is different. There's really no one-size fits all for this, people have to evaluate their side effects, talk to others with the same problems, read research, gather a plan, and go through with it. After 5 months of careful planning on my end I am seeing the light at the end of the tunnel with my own personal side effects

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Good answer, I can respect that

my lingering problems in no particular order are brain fog, acid reflux and fatigue. 
 

Ive done some good work with kinesiologist but I’m thinking I’ll see a neurologist, I think they can help with brain fog these days. It could be a result from depression or hypothyroidism for example but I can’t be sure 

I wouldn’t know though if my issues are anything to do with autoimmune - for me I wouldn’t go chucking drugs at it randomly not knowing the cause, personally just couldn’t do that.

Glad you’re getting better!

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On 11/28/2020 at 4:08 PM, Anna Nim said:

I have seen dosage recommendations in various places. I am not quite sure what the 'legal' amounts are. You height is irrelevant. Regardless of dose, this is TOXIC and UNSAFE at any dose. ANY dose is dangerous. Here a 40 page booklet from the FDA's own website. https://www.accessdata.fda.gov/drugsatfda_docs/label/2008/018662s059lbl.pdf

(Anyone reading this, please ensure you fill out the MHRA survey regarding sexual side effects and suicide, regardless if you even took it they want to hear from the people) 

DOSAGE AND ADMINISTRATION Accutane should be administered with a meal (see PRECAUTIONS: Information for Patients). The recommended dosage range for Accutane is 0.5 to 1.0 mg/kg/day given in two divided doses with food for 15 to 20 weeks. In studies comparing 0.1, 0.5, and 1.0 mg/kg/day,8 it was found that all dosages provided initial clearing of disease, but there was a greater need for retreatment with the lower dosages. During treatment, the dose may be adjusted according to response of the disease and/or the appearance of clinical side effects — some of which may be dose related. Adult patients whose disease is very severe with scarring or is primarily manifested on the trunk may require dose adjustments up to 2.0 mg/kg/day, as tolerated. Failure to take Accutane with food will significantly decrease absorption. Before upward dose adjustments are made, the patients should be questioned about their compliance with food instructions. (p. 30).

It also has a chart for weight/dosing (would not copy right). My son was simply given too much, but ANY is too much IMHO...

Anna Nim

 

 

 

Hello Anna, I spent some time reading through your post history. Sorry about your son, I am his same age and also going through this life obstacle. 

 

I found something similar to my story while reading through your posts, in that you said he has hairloss along with scalp itch. The itching is especially alarming for me to hear, as I have the same side effect from accutane. Well it turns out this side effect, in my case, was Lichen Planopilaris. Essentially it is an autoimmune disease in which your hair permanentatly diffusely scars over, subsequently not allowing regrowth. I got a proper diagnosisis from a dermatologist.

 

I have been having some success treating it with a medication called Otezla. Just wanted to tell you, but I realize he has other more important side effects that require care for. However, if he does have Lichen Planopilaris, which I'm nearly positive he has (as I have spoken to many others whom had Lichen Planopilaris from accutane), I wouldn't doubt his other symptoms could *also* be autoimmune related. Just a thought worth sharing.

 

 

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On 11/30/2020 at 2:58 AM, Gunnersup said:

Hello Anna, I spent some time reading through your post history. Sorry about your son, I am his same age and also going through this life obstacle. 

 

I found something similar to my story while reading through your posts, in that you said he has hairloss along with scalp itch. The itching is especially alarming for me to hear, as I have the same side effect from accutane. Well it turns out this side effect, in my case, was Lichen Planopilaris. Essentially it is an autoimmune disease in which your hair permanentatly diffusely scars over, subsequently not allowing regrowth. I got a proper diagnosisis from a dermatologist.

 

I have been having some success treating it with a medication called Otezla. Just wanted to tell you, but I realize he has other more important side effects that require care for. However, if he does have Lichen Planopilaris, which I'm nearly positive he has (as I have spoken to many others whom had Lichen Planopilaris from accutane), I wouldn't doubt his other symptoms could *also* be autoimmune related. Just a thought worth sharing.

 

 

Hey, have you filled out the MHRA survey? Has EVERYONE who are reading my words filled it out?? They choose to believe that Sexual Sides and Sucides are rare since they do not hear from us. Fill it out today! 

https://www.gov.uk/government/consultations/isotretinoin-call-for-information-to-be-considered-as-part-of-an-expert-review

That being said, perhaps I will take him to a (shutter) dermatologist..they SHOULD be able to diagnose that, at least...

In your experience with this, does this sound like Lichen? He does not appear to have missing hair at this time. He was losing it when he got sick, but that has stopped. He does still report that itchy hot spot at the center of his crown (basically where the 'whorl" is. He scratches it a lot. A few weeks ago, he got a chiropractic adjustment and after icing his neck, that spot on the top of his scalp was icy. I have never seen any spots or anything on his scalp in that spot, except from scratching (I guess it was in that order).

What kind of blood tests are done to determine an auto-immune issue? Does this medication treat other things or just that, although I admit I would be VERY hesitant to take a damn thing. How does the derm diagnose the issue? Do some people take it for a time, then stop. (He also has "Male pattern hair loss" that I also am certain was triggered by ISO,. I am pretending not to notice).

I want to take him to Drs to AT LEAST get diagnoses. FFS, that should be easy! The Uro said it was in his head, refused to do ANYTHING since his T was "WNL" at a mere 523. He has eye issues going on as well, although IDK if it is ISO or the mild concussion he got two months after. I always think ISO. Fukers..

 

 

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On 12/2/2020 at 5:10 PM, Anna Nim said:

Hey, have you filled out the MHRA survey? Has EVERYONE who are reading my words filled it out?? They choose to believe that Sexual Sides and Sucides are rare since they do not hear from us. Fill it out today! 

https://www.gov.uk/government/consultations/isotretinoin-call-for-information-to-be-considered-as-part-of-an-expert-review

That being said, perhaps I will take him to a (shutter) dermatologist..they SHOULD be able to diagnose that, at least...

In your experience with this, does this sound like Lichen? He does not appear to have missing hair at this time. He was losing it when he got sick, but that has stopped. He does still report that itchy hot spot at the center of his crown (basically where the 'whorl" is. He scratches it a lot. A few weeks ago, he got a chiropractic adjustment and after icing his neck, that spot on the top of his scalp was icy. I have never seen any spots or anything on his scalp in that spot, except from scratching (I guess it was in that order).

What kind of blood tests are done to determine an auto-immune issue? Does this medication treat other things or just that, although I admit I would be VERY hesitant to take a damn thing. How does the derm diagnose the issue? Do some people take it for a time, then stop. (He also has "Male pattern hair loss" that I also am certain was triggered by ISO,. I am pretending not to notice).

I want to take him to Drs to AT LEAST get diagnoses. FFS, that should be easy! The Uro said it was in his head, refused to do ANYTHING since his T was "WNL" at a mere 523. He has eye issues going on as well, although IDK if it is ISO or the mild concussion he got two months after. I always think ISO. Fukers..

 

 

There is a possibility it is Lichen Planopilaris, a dermatologist will be able to tell. Otezla if working for my Lichen, but it's the only side effect from accutane I have. So I don't know if it would work for other accutane side effects. I bet it would, though

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On 11/30/2020 at 4:58 PM, TrueJustice said:

Good answer, I can respect that

my lingering problems in no particular order are brain fog, acid reflux and fatigue. 
 

Ive done some good work with kinesiologist but I’m thinking I’ll see a neurologist, I think they can help with brain fog these days. It could be a result from depression or hypothyroidism for example but I can’t be sure 

I wouldn’t know though if my issues are anything to do with autoimmune - for me I wouldn’t go chucking drugs at it randomly not knowing the cause, personally just couldn’t do that.

Glad you’re getting better!


have you done a extensive thyroid test ? Even though your TSH is still within range which most doctors do, you could still have secondary hypothyroidism.

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1 hour ago, Ronnie99 said:


have you done a extensive thyroid test ? Even though your TSH is still within range which most doctors do, you could still have secondary hypothyroidism.

Let me respond by saying this

Why would anyone look into hypothyroidism right now??

Right now Gunnersup has clearly identified an autoimmune issue which he is working on. Not to say we all have the same condition but at least he’s identified an autoimmune issue, to my knowledge there’s nothing for him to consider with thyroid 

I ask this question with all sincerity, the thing that pisses me off the most post tane is not knowing which path to investigate, liver, thyroid, autoimmune, fucking avoiding Vit A, water fast, you name it - you can spend a lifetime going down any one of these paths, and some must be fruitless and a waste of time 

So unless there’s some success story with treating hypothyroidism that’s been clearly diagnosed post tane, I can’t think of why anyone should investigate that area right now?

Happy to hear some stories if there are any!!

Dont get me wrong, I appreciate the question but show me some success stories please 

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On 11/26/2020 at 8:28 AM, TrueJustice said:

Survey done!!!

I dunno, all these surveys just to combat a chronic Candida problem....

Tell the fuckers to report the findings this time unlike the previous 5 surveys over the last 20 years pls - who would know the outcome from those?

thanks 

What other surveys? This is the first time ever Accutane  victims have had the chance to be heard. Your australian regulators are doing nothing and although I don't have much faith in the MHRA they are at lest rolling this survey out to victims across the world.

Devastatingly there are thousands of young Accutane victims who will never again get the chance to be heard because they are dead. Anyone who has ever been hurt by this evil drug please speak up on behalf of all the loved ones we have lost and for all of those who will go on to take their own lives because of this wicked drug. 

22 Accutane deaths have been reported in the UK since the MHRA fist agreed to reconvened an EWG and 54 in the US. We all know that many Accutane suicides will not have been reported and there is no way to know the real numbers of lives lost to this evil drug.

Everyone, please take the time to fill out the survey and if you want to say more you can email the expert working group directly: isotretinoin @mhra.gov.uk

Edited by timetoban
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On 11/26/2020 at 11:03 AM, Yedek said:

Let's hope all victims will have a conscience. I know it is too late for us but more will die if we do not act now.

Please complete the survey and more if you feel strongly. email the MHRA to voice your concerns and call for support and compensation for all victims.

Edited by timetoban
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On 12/5/2020 at 8:15 PM, TrueJustice said:

Let me respond by saying this

Why would anyone look into hypothyroidism right now??

Right now Gunnersup has clearly identified an autoimmune issue which he is working on. Not to say we all have the same condition but at least he’s identified an autoimmune issue, to my knowledge there’s nothing for him to consider with thyroid 

I ask this question with all sincerity, the thing that pisses me off the most post tane is not knowing which path to investigate, liver, thyroid, autoimmune, fucking avoiding Vit A, water fast, you name it - you can spend a lifetime going down any one of these paths, and some must be fruitless and a waste of time 

So unless there’s some success story with treating hypothyroidism that’s been clearly diagnosed post tane, I can’t think of why anyone should investigate that area right now?

Happy to hear some stories if there are any!!

Dont get me wrong, I appreciate the question but show me some success stories please 

Well mate you wrote regarding brain fog it could be Hypothyroidism so I was trying to give you a pointer.

I went to see a neurologist last week, he gave me the option to do two tests, a PET Scan and an MRI, im thinking of doing both, possibly the PET scan could somehow show reduced blood flow to certain areas of the brain, I think I read in a study Accutane reduced blood flow metabolism to the orbitofrontal cortex, it will be interesting to compare the scan to normal/controls.

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