My post aromatase inhibitor syndrome story

Member Stories
#1

Where are you from (country)? Finland

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, something along the lines of “permanent damage after using aromatase inhibitors/arimidex”

What is your current age, height, weight? 24, 185cm, 73kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Arimidex mainly, thats what started all this and later on did experiment very short while with small doses of letrozole trying to see if it would help (it absolutely did not)

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Hard to remember exactly but I would say along the lines of 0.5mg every other day

What condition was being treated with the drug? I read about it potentially boosting testosterone and potentially increasing height by keeping growth plates open via inhibiting aromatase (was very naive and had no idea about the consequences this would lead to)

For how long did you take the drug (weeks/months/years)? I’d say between 3-5 months, probably closer to 3.

How old were you, and WHEN (date) did you start the drug? 19 or 20.

How old were you when you quit, and WHEN (date) did you quit? 20, had to check out some of my medical history stuff, it would had to be early 2016’ish.

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

How long into your usage did you notice the onset of side effects? The side effects I have were not during the middle of using them, however I do remember being very lethargic and felt feverish towards the end while still on it (figured I had crashed my already normal E2) but the symptoms I have now started at the very end of using or just after quitting.

What side effects did you experience that have yet to resolve since discontinuation? Itching of upper body, itching/pain in breast area maybe little gyno too, itching around love handle area (weirdly enough, always had very low BF but I grew slight amount of fat tissue around hips just where it iches), scalp itching and hair loss along with slightly receded hairline (it mainly receded very rapidly during the time I used arimidex but hair fall has not stopped ever since, used to have perfect thick hair before this), low libido, erectile dysfunction, being extremely fatigued 24/7,dark circles under eyes that wont go away, almost 24/7 sweating/hot flashes which are HORRIBLE, chest pain and occasionally some joint pain in my fingers and oddly enough slight pain in my left shoulder only. Also emotional sides include brainfog, emotional numbness, memory issues, severe depression and such. Also developed severe intolerance to caffeine, even one cup of coffee will cause intense panic attack like symptoms.

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

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

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[maybe, not sure] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[x] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[x] Dry / Dark Circles under eyes

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

[x] Other (please explain) wrote them above

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

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)? There has not been drastic changes or anything that would indicate a clear change which leads me to believe this is more of a receptor issue. Only thing that has been “off” is my serum DHT which has been both times I’ve tested it at the very bottom end of reference range, almost under it.

Anything not listed in the above questions you’d like to share about your experience? Not much, this has just been horrible nightmare and has detoriated my life and health completely.

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

(Copying what I wrote in the other topic)

Greetings. I decided to share my experience with permanent, severe issues after using AIs. I am 24 year old male. I first used arimidex at about 0.5mg EOD dose for several months over 3 years ago trying to boost my testosterone which I would have never done if I knew what would happen. This honestly feels surreal. Even saying it has been that long feels awful because I have maintained pretty much same symptoms if not worse now than it was right after quitting and feel like my health and life has detoriated.

Symptoms I have is itchy upper body skin, breast pain/itching, scalp itching/hair loss, dark circles under eyes, chest pain, extreme fatigue 24/7, zero libido, erectile dysfunction and maybe worst of them all, almost 24/7 sweating/hot flashes which are HORRIBLE. Not to mention all the mental effects such as severe brainfog, emotional numbness etc. In the past year I have also developed reduced exercise tolerance, vertigo issues etc. Really scary stuff. It has been very long time since I have even used an AI. But I feel like every time I tried to use it(or a SERM) it worsened my symptom severity. Also I tried HCG for a month last June and it did show my T and E2 rose normally in bloodwork but did 0 for my symptoms, I felt like it increased hot flashes though.

All bloodwork has been quite normal so doctors cant really offer much help, as a matter of fact the two endocrinologists I saw would not believe that these symptoms could have been caused by AI and even though if it was possible that they would not exist this long after discontinuation.

Only thing that has been little abnormal is my serum DHT which has been both times I’ve taken it at the very bottom of the reference range. I will be taking some bloodwork soon though first time in over 6 months to see where I am at. I just want to figure out the mechanism that is causing this all and how to possibly fix it. My health has detoriated and I feel like an old man thanks to this and I hardly feel like going out anymore due to looking like sh*t compared to what I used to look like before taking aromatase inhibitors.

Thanks for reading. I just feel relieved there are other people that share this same type issue and I am not crazy and just imagining this.

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#2

sorry to hear. A severe pssd sufferer from Finland.

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#3

I feel for you bro. I’ve also been a long time user for both AIs and finesteride. It all started with finesteride (big mistake) because I was trying to save some hair not knowing the high price tag I’ll pay with my own life! I experienced typical PFS symptoms and bloodwork used to show normal T yet high E2. So I resorted to AIs (bigger mistake) to correct T/E2 ratio. Each AI (Arimidex, Letrozol, Aromasin) used to give me mixed results such as initially increased libido that would dissipate later leaving me with a myriad of symptoms that are very similar to yours (except the itchiness). Fast forward to 2017, I kept re-introducing AIs (aromasin) every now and then at a very low dose but I still got bad sides and they were much more pronounced than all previous years combined. I couldn’t take it anymore becuase I remember waking up in the middle of the night breathless with suicide ideations and didn’t know what to do or who to turn to. I quit AIs for good and had numerous bloodworks done and E2 would always come at the bottom. Months and even years later and E2 was still very low despite normal Testosterone level. I knew I screwed up my body real bad.

T/E2, E2/DHT, Cortisol/DHEA are all critical to restore normality. It’s also worth mentioning that in order to fix what ever issue you got then use the following pattern:

Adrenals > Thyroid > Gonads

Yes, adrenals should be your first priority.

#4

Yeah, I read in the other topic that taking AIs or SERMs would cause them to feel even worse afterwards which is literally what happened to me. I tried once or twice to take small doses of AI/SERM for a little while to see if it would effect symptoms and after stopping I could feel symptoms going worse. I thought I was imagining it but I read other people saying the same thing, really weird and scary stuff.

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#5

Hi @Lost !

I too got sick from taking an AI called arimistane. It’s my three year anniversary today (don’t all congratulate me at once). Over time, some symptoms have improved and have become a bit more okay. Others have stayed the same (sexual symptoms, mainly). I’ve done blood work, and it’s always come back normal. I suppose E2 was on the lowish side about 6 months out (17 with the E2 sensitive lab). I haven’t tested DHT, however. I might do that during my next physical.

Anyways, thanks for filling out the member story. You’re definitely not alone with the AI thing and there are many scattered stories across the internet like ours. Take care and feel free to ask anything about the AI situation.

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#6

DHT comes from T via 5-alpha-reductase. Other substances and foods and drugs can lower 5-alpha reductase. What have you taken recently?

Also, even if your Total T blood test result is in range, if your DHT is below range, then I think you need more T, either via Clomid or supplemental topical T.

Do you understand all this?

#7

Yeah. I have not taken anything recently that would affect hormone levels. The gyno thing seems to have increased slightly recently (although still only mild form) and it really is outright painful itchy almost all the time. Seeing as DHT will antagonize estrogen on receptor sites there could be a clue. But my DHT increased a fair bit on HCG but didnt affect symptoms, maybe the bigger rise in E2 same time counteracted the benefits? I dont know, pure speculation.

#8

I understand.
Are you going to have a doctor monitor the gyno?

#9

Have you tested cortisol at all

#10

I might visit an endocrinologist again. I have previously talked to two, one said he could feel slight tissue and other said I have no gyno but that was year ago.

And I havd tested cortisol several times, it varies being in the bottom 3rd to mid range. When I did saliva cortisol once over a year ago the morning sample was in the upper third. So generally normal cortisol levels. However my ACTH was around 7 last time with ref range of <54. It has in the past been in the upper range if not slightly over it but could have been due to slight anxiety while blood was being taken (?) Doctor thought nothing of it since cortisol was in range.

#11

There might be a problem if ACTH is below normal AND cortisol is below normal at the same time. But these two hormones fluctuate.

Cortisol that is too high is likely to cause: rounder fatter face, fat gain around the middle of the body, stretch marks that weren’t there before, high or higher spike in blood pressure.

Cortisol that is too low is likely to cause: complete exhaustion, not being able to move, low blood pressure, feeling like you will pass out, weight loss.

I have had experience with too low cortisol and my symptoms were those I just mentioned. Be glad you have not had too high or too low cortisol!

#12

Yeah I have dealt with low BP in the past but it seems normal currently. I do however have EXTREME sensitivity to any stressor. I feel like my body is in 24/7 fight or flight state most of the times that I have zero control over.

#13

The thing to remember is the difference between adrenaline and cortisol, despite what we see on YouTube or wherever.

Adrenaline rises quickly and goes down quickly due to a stressor. This is normal for animals including humans, we need adrenaline to help our bodies adapt at a moment’s notice. So measuring adrenaline does not make sense cuz it fluctuates so much.

If adrenaline is consistently high every day every hour all the time, some people get cortisol above normal and some people get cortisol below normal–and some have normal cortisol. So cortisol is a measure of longer term stress overall on the body over time, which is different for adrenaline.

I think I read that some people with PTSD have lower than normal cortisol, and some people with depression have higher than normal cortisol, but again, it’s hard to say X happens in all cases.

#14

Took some bloodwork. Unfortunately the lab did not have sensitive estradiol test so I had to take the regular one, no idea how reliable it is. There is no visible further growth of gyno but my breast area itches painfully almost all day. Fatigue has become unbearable, sometimes my body almost goes to sleep against my will.

Basic blood count was all normal apart from slightly under range platelets which has always been the case (120-145 when lower range is 150.) Also normal lymphocyte count but the % count of lymphocytes were just tip over the range whatever that means.

Tests were taken at 8.30AM

LH: 4.10 IU/l (1.5-9.3)
Total testosterone: 17 nmol/l (10-38)
SHBG: 31 nmol/l (15-95)
Free calculated testosterone: 271 pmol/l (155-800) [low’ish?]
Estradiol, non sensitive assay: 24 pg/ml
TSH: 0.67 mIU/l (0.4-4.00)
fT4: 17 pmol/l (10-21)
Cortisol: 211 nmol/l (138-690) [low’ish?]

Also took liver test (ALT) which was marked as <9 on a range of <50.

A bit fearful at the time of this pandemic to go to doctors since I am feeling very weak and dont feel like my body could fight such infection at this moment if I were to catch it…

#15

Standard E2 assay usually overestimates the result so your actual E2 is likely lower (borderline low). Your other numbers are fine (I’d like to see SHBG though) and I wouldn’t be too concerned about lymphocytes, platelets and ALT. Yes your AM Cortisol is low normal. Have your DHEA-s tested if you can. It will help you in assessing your adrenal function.

Both low E2 and low Cortisol can produce the weakness symptoms you describe.

#16

Will go ask for some bloodwork at some point from a doctor so I can have my insurance cover it. Isn’t low cortisol issue usually accompanied by low blood pressure? Mine is normal.

#17

Yours isn’t low per se. More like low normal. It’s preferable to have high normal in the morning. Do you struggle with getting up? I had low Cortisol symptoms before and they’re usually like difficulty getting up in the morning, early evening tiredness, fluctuating blood sugar level, headaches, and reduced capacity to handle stress.

#18

The tiredness is really affecting everyday life now. Like the sleepiness is sometimes scary as I can not control it. I feel like I’ve had an all nighter after being just few hours awake. All of this is obviously somehow tied to my estrogen manipulation as the itchiness and hot flashes points to hormonal issues. But worst part is that nothing on bloodwork thus far has been blatantly out of the norm.

#19

If you’re referring to skin itchiness then this is more like issue with immune system. As a matter of fact, there’s this unique relationship between Estrogen-Adrenals-Immune system. I had an even lower E2 of 11 at one point. My Testosterone always came ~18. I tried everything to raise E2 but failed miserably. One time I took DHEA for 3 weeks then had E2 tested and BOOM it’s 28!

Having immune system disorder leads to issues with adrenals, which in turn causes low E2. The extreme lethargy and night sweats are both symptoms.

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#20

The thing is, I took HCG with fairly low dose last year for a month and my E2 increased a fair bit but felt no difference in symptoms, if anything it seemed to increase hot flashes for some reason.

Does Immunoglobulin A tell anything about your immune system function? I took a saliva cortisol test like year and a half ago and it also measured my IgA levels from saliva which were towards the low end of reference range.