Gents93 story - Post Aromatase Inhibitor Syndrome


#1

Where are you from (country)? USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google search, I do not remember how I came across it.

What is your current age, height, weight? 24, 5’4, 164lbs

Do you excercise regularly? If so, what type of excercise?
Yes, resistance training 4-5 times a week for the last 9 years.

What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
No specific diet, my ensure that I get all my micronutrients in my diet, while eating whatever I want.

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Anastrazole, or Arimidex

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 0.25mg every 2-3 weeks for 3 years, then 1-3mg every week for 2 months in May/June 2017

What condition was being treated with the drug? Hyperestrogenemia, for recreational bodybuilding purposes (illegally) while supplementing with Testosterone

For how long did you take the drug (weeks/months/years)? Total of 3 years

How old were you, and WHEN (date) did you start the drug? 20, March 2014

How old were you when you quit, and WHEN (date) did you quit? 24, August 2017

How did you quit (cold turkey or taper off)? Cold turkey

How long into your usage did you notice the onset of side effects? 3 years

What side effects did you experience that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence (only in a crash)
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate (had this from being on Testosterone already - was considered normal)
Reduced Ejaculate (same thing)
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility (same thing)

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks (only in a crash)
Severe Depression / Melancholy (only in a crash)
Suicidal Thoughts (only in a crash)

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness (same thing, had this from steroid use and was considered a normal finding)
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
[xxxx] Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
[xxxxxx] Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)
-Penile Hypersensitivity (pre-mature ejaculation)
-better sleep
-better energy
-faster body hair growth that now grow coarsely and feels dry
-water retention
-loss of vascularity
-loss of acne
-loss of sebum production
-loss of appetite
-gastroparesis (only in a crash)
-reduced nail growth and reduction of texture
-dry skin
-dry hair
-loss of the ability to achieve reactive hyperemia (muscle pump during resistance training)
-loss of nipple puffiness that I always had on testosterone that indicated my estrogen was high
-severe and adverse reactions to clomid, nolvadex, and phytoestrogens (Horny Goat Weed, Flaxseeds) that I never got before
-cold extremeties
-lower blood pressure and basal heart rate

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

Increasing estrogen through increasing T dose, clomid, HCG, nolvadex, alprazolam

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Nothing at all has changed on my comprehensive blood tests.

Anything not listed in the above questions you’d like to share about your experience?

Yeah, this disease is absolute bullshit.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

Before May 2017, I considered my life to be perfect. I had just finished a Cellular and Molecular Biology Degree at a Pennsylvania based University and I have just finished a bachelor in science for nursing from a New Jersey based university, bolstering a Summa Cum Laude GPA. I am fortunate to have a beautiful family and many supportive friends.

I had no health concerns, no psychiatric issues, no previous hospitalizations, no allergies, no prior illnesses, no family history of depression or anxiety, and no indication of other endocrine disorders. I do not use any prescribed medications to promote health or any recreational drugs. I would consider myself a healthy young man. I was extremely active my entire life and loved to be in the gym. Owing to this passion, I started self-medicating with replacement doses of testosterone in March 2014. I have never had any health issues being on testosterone and kept a close eye on my bloodwork. At this time, I dosed the testosterone at 100mg per week with 0.2mg of the aromatase inhibitor Arimidex every two to three weeks as needed. I still supplement testosterone; however, this regimen is now under doctor’s supervision. In terms of physical characteristics, I have always had a thick head of hair, no hair loss or impending signs of it, and no family history of male pattern baldness. My skin was always soft and supple; it produced copious amounts of sebum which warranted at least 2 showers a day to avoid acne breakouts. My skin would flush with blood during any vigorous activity. It was always warm and radiated heat, and I loved sleeping in colder temperatures. My nails grew rapidly and I had to cut them almost twice weekly. My metabolism was extremely fast and had great GI motility. In the gym, my performance was excellent. My muscles responded efficiently to resistance training and my muscular endurance was superb. Lastly, I always had great libido no matter my mood or situation. My erectile function was just as efficient as my libido and I never had a single sexual or psychosexual issue either before, during, or after the use of testosterone. Unfortunately, all of these characteristics are now dramatically altered.What Happened?I should note at the outset that any pharmaceuticals I have used were obtained via a pharmacy. It is important to understand when I normally dosed0.2mg of Arimidex, like clockwork, I would lose water weight within two days through excessive urination and would experience a cessation of the presumed symptoms of high estrogen. However, in late May 2017, this did not happen this time. I remained bloated when I took my dose. Puzzled, I continued taking Arimidex to get the desired effect.I began using large doses of Arimidex (2-3mg per week for roughly 3 weeks) to counteract what I suspected to be the symptoms of high serum estrogen. I began to feel different, like something was missing from my body, as if something fundamental had been taken away from me, but I still did not receive any symptoms of low or normal serum estrogen that only took 0.2mg to receive. I started feeling quite odd and socially awkward in social situations which is something that is not typical of my extrovert personality. Physiologically, my performance in the gym began to decline. I would not feel sufficient blood flow to my muscles when I lifted weights, and they started to get cold and clammy. Starting on May 23rd when I began using copious amounts of Arimidex I began losing hair on my scalp at a rapid pace. Within 25days, I lost a portion of hair on my temporal regions, which the follicles here are known to be more sensitive to hormonal changes. At this point I decided to pursue laboratory blood work. My E2 reading revealed <5pg/ml (7.6-42.6). Despite this, I wasn’t having any of typical lower/normal estrogen “symptoms”. Logically, I stopped Arimidex, and within 96 hours I began to feel almost normal again. I lost a lot of water weight through urination, my muscles became full looking again and my low mood lifted. But, I still did not feel exactly as I did before. A week later, after feeling high estrogen symptoms once more I took another 0.25mg Arimidex, which quickly resulted in water retention and feeling very odd. I decided to cease Arimidex, and within 3-4 days, the same pattern repeated: I felt better, but had not returned to my complete usual self. In July, a DO, prescribed me 120mg T cypionate, 500IU Novarel twice per week, 0.25mg Arimidex twice per week. This protocol, which I stayed on for 8weeks, did not help and only made things worse, despite my E2 coming back at 17.2 pg/mL(8-35pg/mL) on the sensitive scale. I also had no response to HCG. In the past, I had great responses to it in terms of testicular size and ejaculatory volume. By the end ofAugust, when I permanently ceased Arimidex, I did not feel a positive rebound that I was getting in June or July. I began not feeling like myself at all, despite no Arimidex. My skin became permanently dry and did not produce any sebum. My libido decreased further, my erectile function suffered, I lost considerable vascularity, and my blood pressure dropped. My hair was (and still is) falling out at a rate you would be forgiven for associating with intense chemotherapy. I’ve also lost body hair and my formidable aggression that I always had.

Since August, my symptoms have continued to worsen, especially when I used a 25 milligram dose of Nolvadex -something that I have used in the past to come off Testosterone temporarily, with no adverse reaction. This single dose of Nolvadex caused my erections suffered even more, my hair loss worsened and accelerated ,my lips and mouth became very dry and arid ,and I lost many more veins that used to be very apparent on my body. At this point, my body completely and permanently stopped producing sebum. In addition to the physical symptoms that appeared immediately after I took the Nolvadex, I suffered from a loss of appetite and intense nausea and exacerbation of previously mentioned symptoms. In early September, I decreased my testosterone dosage back to 100mg (30mg every other day, SQ) as per an endocrinologist. This resulted with no improvement in symptoms, but no worsening. Two weeks after this, I tried a small dose of Clomifene, which I have used in the past with no adverse reactions, which gave me the same outcome as the Nolvadex. In a desperate effort to increase my erection quality I tried a standardized Horny Goat Weed Extract which is something that, when trying in the past out of curiosity, had provided a great result. When I used it this time, within 8 hours I noticed a sharp decline in libido and could not get an erection for days. I later learned that iicarin contains potent phytoestrogens.In November, I returned to doing intramuscular injections instead of subcutaneous, but the same dose. This resulted in an increase of T from 759 to 1006, and an increase of E2 from 25 to 35. After returning to my usual route of administration, symptoms worsened just like they did with the Nolvadex and Clomifene. I felt as if I was undergoing aggressive chemotherapy. I lost appetite, lost chunks of hair on my scalp, lost body hair, had intense nausea, and had muscle wastage. Increasing my testosterone(and therefore estrogen since I was not using an aromatase inhibitor) dosage had never gave me these symptoms, in fact, it increased my libido, hair growth rate and thickness, and made my skin oilier. However, here it had a clear paradoxical effect on my body as my E2 rose from 25 to 35. I deduced from my experiences that my symptoms would concurrently worsen following any increase in estrogen, as if my body was continually silencing my estrogen receptor function in
response to the increased levels, and in addition, paradoxically caused harm to me. The use of SERMS, phytoestrogens, or endogenous increases of estradiol all led to the same outcome. I believe my inhibition of Aromatase initiated an epigenetic down regulation in at least one promoter region relating to the function of the Estrogen Receptor, causing a reduction in my body’s ability to activate certain estrogen responsive genes. As I explained, this reduction in activation of the ER progressively worsened every time I altered my estrogen level in an upwards manner.

I firmly believe that this condition is triggered by receptor over-expression that occurs when SOME people inhibit their hormone production. There is obviously a genetic predisposition to this, hence why not everyone develops what I have or PFS.

There are a few others like me on other TRT forums, namely, lowE2sucks.

I have applied to Baylor’s Undiagnosed Diseases Network for genetic and epigenetic studies, but I believe my chances of getting in are slim.


#2

Sorry to hear what happened.

There was a member of several PFS-related sites who went by “BlackFox/QuantumFaith” and another who went by “Konflict”. They both had problems with severe worsening of PFS symptoms and additional complications after taking aromatase inhibitors. QuantumFaith took his life unfortunately, and no one has heard from Konflict in ages.

Other than these couple PFS cases, I have never heard of such adverse reactions to AIs until now. Could you link to some similar accounts of this happening?

I began to feel different, like something was missing from my body, as if something fundamental had been taken away from me

^ This sounds all too familiar.


#3

As you are probably already aware, recent studies show an overexpression of AR receptors in penile tissue in PFS sufferers. Additionally, previous rat studies have revealed an overexpression in AR receptors in the brain of the rats during Finasteride use.

I feel that investigation should be directed to the following questions:

  • Is the AR expression the cause of PFS? Or is it just something which happens ‘down the line’ from it’s point of origin?
  • What is the root cause of this overexpression? It would seem like the rapid change in hormone levels are the culprit, but this would be hard to confirm.
  • Which specific AR receptors are overexpressed?
  • What can be done to reduce AR expression in a safe manner?

I would feel that there would already be an abundance of science over the decades which would have focused on factors which influence AR expression so perhaps these can be mined.

One would think that animal studies on ways to reduce the AR overexpression in Finasteride-exposed rats would be a logical next step in this ongoing quest to get to the bottom of this malady and offer some kind of remedy.


#4

Yeah, totally get that.


#5

people who have been affected the same way I have:

  1. lowE2sucks -> still in complete denial about his state after I have explained it to him many many times
  2. burritosnstuff
  3. Simeoni

#7

Thanks for this.

Browsing through those conversations, you guys believe you have an “estrogen receptor” parallel to the prevalent androgen receptor theory of PFS?

  1. Inhibition of aromatse enzyme

  2. Very low estrogens

  3. ER overexpression

  4. AI is stopped

  5. Normal levels of estrogen returns

  6. ER expression is downregulated to accommodate return of estrogens in most people, in an unlucky/susceptible minority, ER expression remains extremely high in an environment of high/normal estrogen concentration

  7. ER signal is silenced with a possible silencing of ER-responsive genes

  8. Increasing estrogen via TRT makes symptoms worse

Does this sound close?

Do any of you guys notice symptomatic relief using AIs or ER antoagonists?

Have you found women on breast-cancer survivor forums who are experiencing something similar?

Sorry for all the questions.

btw- Fuck those posters who say you are imagining this and those who say PFS is self-perpetuated


#8

you hit the nail right on the head Dubya, except you forgot to add increasing estrogen in any single manner make symptoms permanently worse. this includes

  • TRT dosage increase

  • SERMS

  • Phytoestrogen products

  • inhibition of CYP3A4 (grapefruit)

  • using an aromatase inhibitor, then stopping it (E2 levels will rise again)

we do notice symptomatic improvement when estrogen levels are not increasing (stable levels) or they are lowered. but once its lowered, we cannot bring it back up again as our bodies cannot handle it.

i have not found any women that have experienced this yet which makes this very hard to prove

and yeah, most of those posters are such arrogant jerk offs. i am too tired to deal with that shit anymore


#9

Hi Gents.

I am here as well because an aromatase inhibitor fucked me up. It went by arimistane, an over the counter drug. I’m 1.5 years out from the first crash, and doing better but still symptomatic. I can get erections when I need to, but libido is low. Tight balls are still around, and my energy, appetite, and muscle are still not back.

I’m going to start eating much better and working out regularly to try to feel better now.


#10

a friend of mine got fucked up the same from exogenous testosterone injection!
all hell breaks loose


#11

your friend doesn’t have what i have.


#12

What things have you tried to feel better and what effect have they had on you?


#15

Gents93,

I’m currently on a clomid 12.5 mg everyday, now switching to every other day. I’ve tried some of the cdsnuts supplements and have done some fasting. Other than that, I don’t really do anything. I try to sleep as much as I can and live healthy, but I’m in a demanding ass graduate program so that is tough. I also tried caber a while ago, and while that raised my libido and EQ, it was causing migraines, stomachaches, and making me feel borderline manic and I could not sleep on it.

I think the clomid has helped a little bit, it has also added its own side effects, however. I think once I come off the clomid, I’ll be feeling slightly better, but I don’t expect to have been cured or any of that.

My test was around 700, and all else was normal besides high (55) SHBG. I might try some thyroid medication next, not sure yet.

Where I’m at right now is pretty much acceptance of my condition, but I want to find ways to cope with the symptoms. I can’t let this condition dominate me and depress me further. For example, if we were diagnosed with MS, we would all have to find ways to keep living and going about our days. What is difficult in my situation is that there is no medical consensus on what the hell is wrong with us. That part disturbs me but I just have to accept that’s the way life is right now.

I know that as time goes on, I will keep improving and improving.

What we can do is start paving the path towards research. Either by donations, or by straight up funding a research project. Research is expensive, you have to pay the scientists, participants, and of course the equipment and rooms.

In my dream world, the research would look into every little nook and cranny of our bodies and brains. Every hormone would tested, neurotransmitter levels, and even tissue samples of our organs. Maybe something in our liver is messed up? Maybe it’s receptors in our balls? Maybe some yet to be identified hormone has stopped or decreased in production. God knows, but only by researching our conditions can we learn more.

I truly believe this condition is treatable. Otherwise you wouldn’t have spontaneous recovery of three days followed by a crash again. I believe that during those three magical days, your body is actually functioning correctly and correctly producing and receiving chemical signals. Then… the magic little thing we don’t know that is wrong with us runs out… We have so many physical symptoms, and I believe there has to be a molecule or signal our bodies are not receiving or producing correctly.

The way I would like to take on this condition is by fundraising a set amount of money, and then use that money for a private or university research team. We as sufferers need to somehow work towards attention and cures of our conditions. but it is not through passive typing on keyboards… only through strategic action and work.

That is my .02 cents.


#16

Totally agree
Tapping away at keyboards isn’t going to do much at all for us , don’t get me wrong it helps to read understand and know your not alone but other than a bit of comfort to each other its not really going to be ground breaking in moving things forwards …

What do you suggest
We have this website but it’s not made a huge impact in getting any real acknowledgment
We have scientists pushing things along sharing data from studies all great but slow moving due to complications and funding
We have our own little trials and experiments using ourselves as Guinea pigs to help find ways to aid ourselves and others all very good but can be somewhat dangerous.

Without major medical backing its a deep hole with lots of confusion along the way.

Not many people have stuck their heads up in fear of it being blown off due to the embarrassment of actually telling people all their problems especially the sexual ones society is cruel and people fear being mocked its difficult when so many have seen doctors and they still don’t get anywhere.


#17

@Baz44uk

  1. I messaged Awor and suggested a massive thread once a month where donations are encouraged. This would increase the money going to scientists.

  2. There is a study going on in Baylor University right now. I don’t know what their money situation is, but perhaps they could use some of the funds we raise on here. If not…

  3. We pilot our own research and hire a private research team. Of course, we need a ton of coordination for this to go down, but it is very possible, and I can’t imagine a research team turning down sufficient amount of money. I would rather not go this route until current research studies are done with, and we’ve supported those causes, however.

We live in a time where biological engineering and new discoveries can be made… We just need the resources and leadership.


#18

How much do you think you’d be prepared to donate for that?


#20

Just to be clear, I’m talking about all of our collective efforts being donated to the PFS Foundation. It would cost a fuck ton of money through donations alone, and that will probably not cover it. But if enough steam gets in the engine and the study proposal is solid, grants could help out, just like how other studies get funded.

Now to answer your question, I’m going to do what I truly think is productive, and donate every Friday. I’m not disclosing an amount, but let’s just say it’s a tiny amount as I in graduate school right now. The more noise and money we all make though, the better.


#21

Good. I think donating to the foundation is the correct way to do it.

I was worried that you were proposing splintering and funding separate studies, which runs significant risk of overlapping work taking place and as a result, money being wasted.


#22

@Greek

Helll no. Keeping all the money in one place is definitely the best way to go about right now. Unless you’re some tycoon who can buy out a research team for yourself haha.

I honestly think PFS is going to be getting more attention in a roundabout way, though. Have you heard of Hims by any chance? They are this company that will send you a Finasteride Rx through the mail. Super easy to get the Rx, and they are all over social media right now. I’m 25 years old, and I see Hims ads all over my feeds. They also sell ED pills, and some lotion and other stuff too. If they start to get big, some of their patients are statistically likely to get PFS-like symptoms. I wish no harm to their customers, but I believe it is bound to happen. When that does, even more attention is going to be placed on our condition, and will up the pressure to find out what the devil is wrong with us.


#23

I have heard of Hims, I think Finasteride is a timebomb, for sure. I’m sure sales are just going to go up and up and victims will also appear with more and more regularity.

As you’ve just said, I wouldn’t wish illness on anyone but the numbers will almost certainly go up, which will make this condition more visible.

I actually found myself wondering what the marketing would be like for a cure if it were discovered. “Now you can take the finasteride gamble risk free!”


#24

Haha hey I’m down to start the “Hims” version of the cure with you if it ever happens!