SPIRONOLACTONE destroyed me, 32 year old female, no hope


#1

Hello Dear Forum Users,

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?POLAND

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 on androgen receptors

What is your current age, height, weight?32, 168 cm, weight loss in progress

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?SPIRONOLACTONE AND BIRTH CONTROL PILLS

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 50 MG/DAY

What condition was being treated with the drug?FEMALE PATTERN HAIR LOSS

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

How old were you, and WHEN (date) did you start the drug?FEBRUARY 2018

How old were you when you quit, and WHEN (date) did you quit?JUNE 2018

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

How long into your usage did you notice the onset of side effects?AFTER THE FIRST MONTH GRADUALLY BUT I DIDN’T ASSOCIATE THEM WITH THE DRUG, I GUESS I WAS VERY NAIVE

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

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ ] Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

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
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
[ ] 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
[ ] Increased hair loss
Frequent urination
[ ] Lowered body temperature

Other (please explain)
FAT ATROPHY FROM THE FACE, COMPLETE LOSS OF SEBUM ALL OVER THE BODY, LOSS OF SKIN ELASTICITY AND MOISTURE, DRY EYES, DRY MOUTH,EXTREME SKIN THINNING AND ROUGHNESS - NOW I SEE ALL THE VEINS ALL OVER MY BODY, COMPLETE LOSS OF SUBCUTANEOUS LIPIDS THAT GAVE THE SKIN ITS MOISTURE AND PLUMPNESS, STUPIDITY - I FEEL DUMB, AND LOSS OF DRIVING ABILITY - ABSOLUTELY NO COORDINATION, DIFFICULTY CONCENTRATING

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? HEALTHY DIET, EXERCISE, SKIN OILS ETC - NOTHING HELPS, SUPPLEMENTS: OMEGA3, VIT D, BUTCHERS BROOM EXTRACT, GINKO BILOBA, HYALURONIC ACID, VIT C WITH COLLAGEN, PLANNING ON BUYING BOTULIN, QUERCETIN, P5P, CARNOSINE,

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)?I AM STILL WAITING FOR AN APPOINTMENT WITH ANOTHER ENDOCRINOLOGIST WHO WILL HOPEFULLY TAKE ME SERIOUSLY

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

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

To all dear and smart Forum users out there,

Hello,
I am a 32 year-old female from Eastern Europe. I discovered your forum and all the positive things/research that you guys do here by accident, looking for information that could help me repair my own tragedy - basically, another ruined life, I don’t understand how can a couple of pills transform somebody into a person 20 years older in the body and the brain…

My story is about the effect that taking Spironolactone for 3 months had on me, not Propecia that your Forum is all about, however, I recognize that these drugs might share similar mechanisms in the body of some susceptible men/women and, knowing that you have amassed so much knowledge here, I hope someone here can chime in, give me some ideas, advice, anything, because I’m at my wits end and sometimes suicidal.

So, I was morbidly obese from the age of 23 and the thing is, in January I decided to lose the weight once and for all, I was examined endocrinologically, and I gave myself 6 months before considering bariatric surgery.

As I was developing male pattern baldness and PCOS, the doctor decided to put me on birth control pills (estradiol and progesterone - this combination lowers testosterone) and spironolactone to help with hair loss. By the way, it didn’t work, I mean, as soon as I weaned off of it, there was a total fallout of my remaining hair and right now I’m saving for a wig.

AT first after taking these drugs, I was happy, exercising, drinking water, eating my Omega 3, Buther’s Broom and Pycnogenol supplements, shedding pounds like crazy! following a low carb diet, which always worked in the past, even a couple of months before….then, all of a sudden, I started feeling awful, weak, depressed, getting brain zaps all the time, losing muscle mass, my appetite was non-existant….
I became so weak, I developed back problems all of a sudden with lumbar vertebrae, I noticed that I’m not losing healthy fat as I used to before, that my skin is beginning to change, I lost all the subcutaneous healthy lipids from my skin on my face, arms, legs and butt (possibly fat atrophy, dystrophy) - my previously very very very oily and fatty skin lost all moisture in less than 3 months, I started seeing all the veins in my body everywhere, besides, the skin turned from white pigmented to yellow and muted, nets of stretch marks, literally, that were not there appeared everywhere on the butt, legs, arms, belly, all the good „juice” is gone, but the worst is the face - although it is depressing that I will never be able to do justice to my body after losing weight as many other women can with plastic surgery, because my skin is basically stretch marks all of a sudden, the face is the worst - in 3 months my whole face, I mean the skin on my eye brows, cheeks, neck has „left” my face, it sags in an inhumane way - I changed from a cute obese woman in her thirties, who was hoping to get healthy, to an old person with dry 60 year old skin that doesn’t stick to her hands, legs, and face….also, the face feels saggy and puffy…the skin has fissures.

I stopped taking the drug, gained 10 kgs back to see if the additional fat can somehow restore the scaffolding to my face, but it didn’t help, now Im planning on loosing weight to a healthy range and begging some American plastic surgeons for a face/neck/brow lift in the future to be able to function socially and earn money for body surgeries, if this skin has the capacity to repair itself, at all. I became depressed and suicidal, I can not tell you the psychological effects that losing your face in 3 months at my age can have on you….I read some of your stories here - I can only emphasize and relate to it so much….and the worst part is that people and doctors don’t understand! I have already visited some endocrinologists and they treat me like a crazy person…I visited a psychiatrist already, my family wants to close me in a mental institution because I became so depressed as this drug ruined my chances of regaining a normal life, when I started telling the psychiatrist that the drug affects ALPHA REDUCTASE IN THE BRAIN AS WELL, GABA in the brain, as well as some dopamine receptors in the mesolimbic system, he concluded that I belong in a facility.

Do you have any ideas if I can fix it, prevent it from getting worse? I’ve been off it for months now, I need to check if I produce my own testosterone, but my skin is dry and nonelastic as hell, I no longer sweat or produce sebum at all. Like the receptors responsible for sebaceous glands and elasticity do not respond at all, and it is only getting worse, like cracked soil - I have pictures from last November when I was the only person shining, like covered in Vaseline, white and young soft skin, now like a 50 year old…

I was thinking about applying hormones topically, but I don’t know if it will have a systemic effect as well.

Meanwhile, I barely leave the house, because when I bump into people who know me, they ask me what happened, do you have cancer, you aged 20 years in 5 months, one of my friends told me, well, I guess some people are lucky when they lose the weight and some turn ugly and you used to be so cute….omg, I thought I wanted to die….the skin does not have wrinkles, it just does not hold onto the face\body/muscles at all….

Thank you for reading this and I will be grateful for any suggestions.
I must say that I admire your work there and I will cite your Forum and Foundation to every doctor I encounter that is worth talking to, unfortunately, I have yet to meet one.
Regards!


#2

Hello from Croatia , Asia!

I am a male in a very similar situation to you. I believe my problems were caused by an extreme crash diet or from an antifungal cream, maybe a mixture of both. Anyways I first noticed low libido/which took months to figure what was going in, like a big brain fog. Then I noticed the absence of morning and spontatenous erections/precum etc. Then I noticed low semen volume and poor ejaculate force. Then came genital numbness. When im wearing pants I cannot tell which way my penis is facing. It also feels completely numb. When im not wearing pants and touch the skin , the skin feels exactly like RUBBER! No sensation in it. Finally I noticed that my appocrine sweat glands are completely off. I no longer produce body odor like a normal 24 year old man, and there is no moisture in my armpits, or my genitals like before. These were the 2 main places I sweat before, completely gone now. My eyes are also completely dry and feel saggy/tired.


#3

Do you have any blood test done?


#4

me or the original poster?


#5

Original poster, is better not to mix.


#6

Hello @Asia,

I am sorry to hear of the problems that you’re dealing with. Part of our plan here is to gather men and women affected by a variety of drugs. It will be easier for us to research, find therapies and support one another when we are all together. Though, nobody wishes to be here, you are very welcome and you are absolutely in the right place.

While our varied conditions are upsetting, please don’t take risks with your health, some of our members have worsened their condition through the use of drugs and supplements. It’s worth noting that many people report their condition improves with time. Hold on.

If you are able, you could take part in our 23&Me project which aims to find out what people affected by these syndromes have in common genetically. Soon we will publish our member survey which will result in our conditions being categorised appropriately. These things are steps towards further scientific advancement. You can read about them here:

There are studies in progress and plans for the future are being drawn up.

There are reasons to feel hopeful for the future, but you must hold on.


#7

Hi Joey10,
I am sorry to hear about your problems.I feel you.
I also do not produce any body smell, nothing, like Sahara desert - have you researched any articles how to bring back sweating and oil functions? Did you also notice change in skin color maybe, like some lipids from underneath your skin all over the body are gone?

I went to a sauna for 20 minutes last week, and no sweat, when just last year I would sweat profusely in 5 minutes. Unbelievable. Like an old dry person.
I also have this problem that when I went to some doctors, they told me it’s aging and obesity, but f… hell - both old and fat people sweat and have blackheads in the nose, their face don’t hung and hurt from sagging…

PS.I love Croatia - I was hoping to go there in a bikini next year, actually, but since no health and bikini for me anymore, then maybe I will visit your beautiful country as a 32 year old looking 60years old…good that people are friendly there so if romance is off the table at least friendships might be included…


#8

Tomas,
Thank you for reading my story.
No, not yet, but I will post as soon as I have them done.


#9

Asia,

Just to point out, that one of the most agreed tips to do when you are on PFS is to take a lot of sun exposure.
Telling this for your PS note.

Regards.


#10

Thank you Greek,
I will have a look at this.
Since now I have become irreversibly ugly and will have no normal life anyway, I might as well contribute to science development to be of any use to humanity.

I can’t believe that taking some pills might change your life like that, forever. There must have been something in us that made us so vulnerable to all of this.

Greek,since you are a moderator here, are you familiar with any protocols on turning the oil glands, sebum and sweat production?
I know that men first focus on erections because it is the most important thing for them, and also, neurological side effects - I had a lot of impulsivity, creativity and drive, a bit masculine for a woman, and now living without the effects of testosterone in my brain, feels like nothing, nothing at all…so weird, I can not explain that…


#11

Ciao Asia, greetings from Italy!
I’m sorry your story. Be strong


#12

Also, I forgot to ask if there have been any complaints, court cases, actions taken against the manufacturers in the USA? Have you people filed any forms to manufacturers and was there any response at all? They should be paying for our tests, and coming up with solutions for God’s sake…


#13

Sadly, I am not aware of a method to restore oil production. I will say that I have had dry skin, lack of odour through this but have noticed that it is generally better than it was and sometimes is substantially so.

With regard to creativity and drive, I have also found that this has at times been better. In general I have found that my symptoms fluctuate but that they have all improved to some degree with time.


#14

Hello Asia. I have many of the same problems as you from SSRIs. I was a very young looking 36 year old who was always mistaken for 10 years younger. Now my skin, especially on the face, is dry and thin, my hair thinned, white hairs appearing on beard, etc. I don’t sweat anymore either. No oil is getting through. I have genital numbness and tissue damage. Also I have no emotions or libido. It really is shocking what these pills have done to us. We were all just trying to improve ourselves so we could get what we want out of life. Now many of our lives have been destroyed, in some ways irreversibly. Anyway we’re all suffering this strange horror together. Welcome.


#15

Hi jrums01!
Thank you for your "Welcome"but I’d rather not be here, really.
I have read your story here - I am so sorry for you, actually for all of us.
I too took some SSRIs in my life in my early twenties and regret doing it, because I believe they turned on some genes for a very debilitating mental illness in me that I was not aware of until I took Spironolactone that aged me 20 years in 3 months, made my brain zap and some memories returned to me, showing me that I was not even living a life since I quit Zoloft and Wellbutrin.In a way, Spironolactone emptied my brain of dopamine and DHT as well as GABA, so now I started thinking clearly.If you want to talk about these mental sides, PM.
Regards!


#16

Hi there @Asia

I am so sorry to read of your experiences. My heart goes out to you. Hopefully by coming here and with the support of the community here it can help you somewhat. Your coming here certainly helps us and the bigger fight for us all to get better. As you are probably aware and as has previously been stated by @Greek, the community here is looking to expand as we are becoming aware that our symptomology isn’t unique to a particular drug and appears to occur in a whole spectrum of endocrine disruptors.

On a personal note I can relate to your pain. Although my experiences aren’t quite the same, my skin prematurely aged whilst on propecia, and I subsequently lost subcutaneous fat from my face when I stopped the drug, plus stretchy skin. This psychologically had a profound impact on my own life: being faced with something which shouldn’t happen at this stage of life, or frankly at any stage (these rapid changes shouldn’t naturally occur). It makes it all the more difficult when it happens to your face. In my own particular case I can say that there has been no evident further deterioration and my mood around it has improved significantly.

If I remember rightly I am sure that I have come across Spironolactone myself when I was looking for others that had experienced similar side effects to myself online. Are you aware of other users of Spironolactone who have reacted similarly?

Although these drugs can clearly do harm, I strongly believe that we will get to the bottom of what has happened to all of us and from that treatments can be explored.


#17

don’t give up on yourself yet Asia! even if it seems that at this point its game over it is often not! I think 1-2 years from today you will be in much better place health wise!


#18

i’m pretty sure douglasmich screwed himself up more with spironolactone


#19

douglasmich took aromatase inhibitor either anastrozole or aromasin or letrozole in effort to cure him from PFS induced by saw palmetto… He got improvements from AI (aromatase inhibitor) but then crashed much harder then he was in PFS state… bed ridden, all connective tissue got destroyed, 0 libido, many neurological symptoms basically he never thought about suicide living with PFS but overdose on AI made him want to consider suicide… raising estrogen to normal or even over normal range had 0 effect on symptoms he got from taking too much AI. I had PAS at same time as he had it but I was a bit in better place symptoms wise than him at that time… Then my symptoms progressed to stage he was in before suicide… But I got better over time… so its not permanent… I started somehow recovering but never was 100% cured. Still could live a “normal life” but wasnt 100% cured
I wanted to kill myself as well just didnt have anymore energy left in me to do it… that saved me


#20

that’s for the synopsis but i’m talking about before all of that