My post aromatase inhibitor syndrome story

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#21

Greetings. Did some new labwork which unfourtunately does not reveal anything abnormal which makes me believe even more that this condition has something to do in receptor/cellular level. But how to convince doctors that when they refuse to even believe I have persisting symptoms caused by AI use? And there isnt much you can do? My chest area itches all the time and is even painful and I think there is some gyno there (bloodwork revealed normal blood androgen to estrogen ratio). Hot flashes/constant sweating continues and the heat of the summer is making it even worse, almost unbearable. My fatigue is getting really strong, I feel very exhausted and my eyes are heavy all day everyday. I feel occasionally really bad heart palpitations and my heartbeat sometimes feels really “forceful”. Anyway, here is the bloodwork. I mainly asked for it to check my estradiol level with the sensitive assay.

LH: 4.95 IU/l (1.5-9.3)
Total testosterone: 20 nmol/l (10-30)
SHBG: 28 nmol/l (15-95)
TSH: 1.38 (0.4-4)
fT4: 15 pmol/l (10-21)
Cortisol: 470 nmol/l (138-690)
Estradiol E2 (Sensitive LC/MS method): 0.09 nmol/l (<0.14) [this translates to about 25 pg/ml]

#22

Consider this as good news. My advice is to try to take off your mind of E2 syndrome due to AI for now. My hypothesis is that blocking enzymes (5AR, Aromatase) may cause a domino-like effect that affects other bodily systems including GI and Immune System. Try and look for other potential causes for your symptoms. If you have gut issues then try and solve them. If you’re getting symptoms of immune system disorders and signs of increased inflammation then that’s another key area to consider.

You may need further tests for blood markers, liver profile, kidney function, vitamins and minerals, etc. to guide you through this.

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#23

Yeah but what could be causing the severe itchiness of my chest and gynecomastia like symptoms along with the severe hot flashes? I can pinpoint them starting after quitting arimidex and it really feels like something hormonal is going on.

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#24

I hear your concern @Lost . This is merely guessing on my part, but Progesterone (P4) may also be a suspect. P4 and E2 are very much interlinked. It is suggested that P4 receptor drives estrogen receptor activity meaning P4 governs E2 receptors density and possibly sensitivity. Hot flashes is a common complaint in premenopausal and post menopausal women who happen to have falling E2 and P4 levels.

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#25

You havent tested prolactin?

has it became worse these hot days? Sounds strange but i would advice to pay attention how you react in the strong sunlight, if it eventually triggers the itchiness in your chest. Its not a solution on a molecular level like doomed hypotetized but maybe worth pay attention how you react to the strong sunlight

#26

Prolactin comes back normal when I test it. I remember testing progesterone once over a year ago, cant remember exact number but it was within the reference range. Only “abnormal” result I have got is blood DHT level has been at the very bottom of reference range even though T has been normal. And DHT is estrogen antagonist. But from what I gather, hot flashes are more of symptoms of low estrogen. And then some say that blood levels of DHT arent the most accurate measurement of 5 alpha reductase activity. All of this is pretty confusing, wish I never took any AI in the first place.

#27

Speaking of low E2, there’re myriad of symptoms including joint pain, depression, night sweats, tendonitis, cold hands and feet, dry skin, lethargy, accelerated hair loss, G.I problems to name a few. Hot flashes is also a usual complaint. Are you experiencing other issues beside hot flahes? I used AIs left and right in the past and while I believe post aromatase inhibitor syndrome is very much real similarly to PFS, I think symptoms are manageable given enough time and by avoiding any anti-estrogen stuff. High E2 symptoms are also quite similar to low E2 ones. Get well soon

#28

Yeah as I talked about I have been experiencing these symptoms pretty much daily since I quit taking AIs few years ago. Scalp itchiness along with hair loss, severe sweating/hot flashes almost around the clock, worsening feelings of severe fatigue that sleep wont fix, dark circles under eyes, lack of libido etc. Only real “high E2” symptom I have is the itchiness of chest area, even painful often. But as I mentioned, blood levels seem to be fine but so I’ve seen them be in many PFS sufferers so there might be more going on in the receptor level. Someone else suffering from this mentioned their symptoms got permanently worse after using anything that manipulates estrogen levels. I believe this happened to me too especially in the fatigue department and in the frequency of hot flashes after I tried AI again and then a course of low dose HCG last year.

#29

I always correlated chest/nipples sensitivity and/or pain with increased estrogen. Professional bodybuilders on aromatizable gear commonly report this issue and resort to AIs. I’ve experienced every low E2 symptom in the book (except the ithcy chest) after years of abusing AIs (Adex, Asin, even letro). I ended up with extremely low E2 and severe depression that won’t go away, I literally was suicidal and tried every tweak known to human to raise E2. It could be something at receptors level or some sort of inflammation due to immune system disorder from tinkering with hormones. Try anti-inflammatory things and see if that helps.

#30

These hot flashes are absolutely horrible especially now that its summer outside. I just cant understand the mechanism these are caused by when my hormonal tests are smack dab in the middle. Only thing I read regarding males and hot flashes is about androgen deprivation teraphy and generally low T/testicular insufficiency which I don’t have according to bloodwork. Also its like I have low and high E2 symptoms same time (painful and itchy chest = high E2) (hot flashes, fatigue, low libido = low E2) go figure… My life is really a living hell due to this drug and I do not even fully understand the mechanism and how these symptoms wont ease up even after years off AI. Let alone trying to find a doctor who could offer any help.

#31

Did you try and herbs like tribulus, ashwaganda?

Maybe taking estradiol could help.

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#32

Please refer to the Post-Androgen Deprivation Syndrome paper on the main website. Our condition mirrors androgen deprivation, but is not driven by hormones.

#33

This would make alot of sense and what I have been partly speculating. Although in my case I used anti estrogen and not anti androgen but same theory could be applied that it somehow affected my estrogen receptor activity (hot flashes in androgen deprivation is also linked to low estrogen)

Also to Das, have not used tribulus but ashwagandha made me feel ill. Estradiol has been documented to help hot flashes but I am not too keen about the potentially feminizing effects. Also so far anything that has manipulated my estrogen levels (AI, SERM, HCG) either has not helped or has made symptoms worse.

#34

Could it be your body unregulated estrogen receptors and downregulated androgen receptors?

#35

I took one dose of AI a couple months ago and have experienced many of your same symptoms. Except I cannot sleep at all, literally a total 100% insomniac. I require a host of sleeping pills like ambien to get any sleep. No itchiness of skin but popping joints, dry skin on face, vertigo like i’m always on a boat, and this persistent effervescent/tension feeling in my head. Also like you said, I cannot handle even a sip of caffeine or I get a huge panic attack and sends my heart rate through the roof. I used to drink coffee and energy drinks with no issue. Doctor of course doesn’t believe taking an AI could be causing this. I understand it doesn’t make sense and there’s no medical literature on it, but this all started the day after I took the pill when I suddenly had an hours-long panic attack, and then everything else started. It’s so weird, wish I had never touched the stuff.

#36

We PFS sufferers must be abstaining from any sort of western/English allopathic drugs for the rest of our life as now we clearly know these medicines/drugs are not medicines but rat poisons. I have lost all my trust on these doctors and so called medicines and drugs. When we get seriously hit by the side effects of these prescription drugs, these same fucking doctors deny to help us. I will always choose ayurveda or homeopathy even whenever I get seriously ill.

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#37

Greetings. Not much have changed atleast for the better. I now wake up like every 2 hours every night and I feel absolutely dead the whole day. My scalp and chest area itchiness has increased to levels that its almost constantly now and I think my hair loss has accelerated, incidentally enough I think my body hair (back, shoulder, arms) growth is accelerating also… Used to have perfect hairline and very little bodyhair before all this. Libido is absolutely dead. And still the worst effects are the goddamn hot flashes I experience almost constantly, I would give anything to get rid of them. Well maybe this absolutely death fatigue is the number one symptom. I am probably going to do extensive sleep study in the near future. One thing I did was check out my cholesterol levels while taking some regular blood work (no hormonal other than thyroid which was normal although my morning temperatures have been low’ish? Just today morning it was 96.98F around 7-8am just after waking up).

My total cholesterol is 6 mmol/l (ref range under 5) which translates to approx. 230 mg/dl. My LDL was 3.4 mmol/l (ref range less than 3) which translates to approx. 130 mg/dl. However my HDL was also (very?) high with 2.4 mmol/l (ref range over 1) which translates to approx. 90 mg/dl. Is there such thing as too high HDL levels? I have been experiencing some circulatory issues over time and my exercise capacity has drastically reduced in the past couple of years. Should I be worried at all? Another point I want to make from this high HDL level is that I’ve read that in estrogen deprivation stages in males your HDL will suffer and estrogen helps increase HDL. If my body was in LOW estrogenic state even if not in blood but at receptors etc. shouldn’t my HDL be affected? Could it be that my body is somehow in HIGH estrogenic state (due to AI use by deprivating estrogen my body upregulated its response to it) which could explain the breast itchiness (even though my serum testosterone and estradiol are normal) and this increased HDL effect, maybe its just genetics but if I was in estrogen deprivation stage shouldn’t my HDL be expected to be much worse? Are hot flashes a symptom of high estrogen sometimes rather than low? Just some thoughts. This is a nightmare. I’ve read from some other post AI sufferers how they are having both low and high e2 symptoms. But this HDL thing just had me thinking…

#38

My own experience of AI has been not so good. I don’t think that pushing our estradiol so low with a chemotherapy drug is the answer. We, men and women, all need estrogens including estradiol to neither be too high nor too low. PFS is not an estrogen-excess disease!

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#39

@Crossroads im seeing my rheum proff today and looking to get a different treatment in the hope it can dampen the Pfs, was going to ask for chemo as this can be used in none responsive rheumatoid patients. My other ask will be Olumiant

#40

@LazarusRy PFS and similar disorders are not autoimmune disorders or immune deficiency disorders.