Thanks for the feedback @Crossroads. This is an area of debate i believe that there is an element of autoimmune at play here as others do. Obviously many other systems are effected as covered in the studies. Its very strange that 'despite being weakened" hardly any of us get colds. With having rheum from being v young i can see/feel similar disease activity. E. G. An extreme attack on the body when eating/ingesting foods/supps etc
Greetings. Symptoms are the same, hot flashes are sometimes unbearable and very intense, same with the itchiness. Fatigue is very bad. I took a sleep study while ago and it showed mild sleep apnea. Hypopneas occur especially during REM sleep. But I remember having one before all this and I think it also mentioned the mild apnea but I was not this way back then symptom wise.
Funnily enough I checked my testosterone and it was highest it has been, around 700 ng/dl and SHBG was 29. Still I have zero libido and feel like shit. Did not bother check estrogen this time since it has always been normal. This must be some type of receptor issue I believe.
your estrogen/estradiol is too low. PFS is not a testosterone/estrogen level problem. It occurs at the receptor epigenetic level. Men need estrogen or they can have poor sexual and mental functioning despite normal or high T levels.
I got all these symptoms from tribulus terrestris.
1 Like
Hello Lost, please take the survey.
Yeah however my estradiol has always been within the normal range even with the sensitive assay. It even rose accordingly a bit over the range during my short HCG trial.
I think my receptors are oversensitive to estrogen now or something. I have water retention in my face, dark circles under eyes that wont go away, constantly sweating, very fatigued, itchiness/pain in chest region etc. The more I think these sound like high e2 symptoms to me rather than low. However I am afraid to touch any AI ever again (atleast the -zole ones, never tried aromasin) and when I tried anastrozole in small doses long time ago after my initial try after which I got all these symptoms, it seemed to make no difference if not make my symptms worse after stopping. Hair loss and body hair growth seems to be accelerating (DHT upregulation due to estrogen overexpression?) I am clueless what to do or how to fix this.
Sorry to hear this @Lost
I think an annual physical exam with all the blood tests they do would be good for you.
And have them do thyroid and adrenal tests too.
The symptoms you describe could be related to problems with hormones that do not involve T or E2.
And even if you do not tell the doctor about PFS/finasteride, which I do not recommend, you and we all still need to get good medical care.
I took Tamoxifen and it made my dick shrink/thinnner (and not “elastic”) anymore. Even though aromatase inhibitors work differently, both somehow block estrogen receptors. I am desperatly finding a way to at least get my dick back to the normal size (Pre Tamoxifen). Theoretically increasing estrogen might work, but I don’ know how.
Unfourtunately all my bloodwork are normal. I did basic bloodwork just while ago there was nothing out of the ordinary, ferritin was a bit on the lowish side but it has been low in the past and I fixed it with iron supplementation. Cortisol and thyroid were perfectly normal.
Literally only “clue” I have had is my blood DHT has been at the very bottom end of reference range while my testosterone is often good even. I think crushing my e2 for no reason which was probably already low normal made my e2 receptors become hypersensitive to normal amounts of estrogen… I feel very sick and fatigued.
Do you have a constipation problem? After taking the AI, I’m constipated all the time
Has anyone here had any improvements with post aromatase inhibitor syndrome? It’s been two and a half years for me.
1 Like
I think there may be a connection with Estrogen receptors and serotonin regulation. For me lower serotonin is the cause of the constipation
Maybe run the test to see if you are low ?
My constipation has now gone away since I stopped using anastrozole
Ohh ok good
No improvements. It has basically ruined my life. Hot flashes all day, itchiness in scalp and breast area, poor libido, extremely tired even after 10 hours of sleep, face looks like shit with dark circles under eyes, slight water retention and overall just looking really tired. It has now been like nearly 6 years of this every day although my overall feeling of health was not nearly as bad in the beginning as it is now. Feels so absurd to even think that this has happened to me and been so long. All I can guess is that something is messed up in the hormone receptors. All bloodwork has come back perfectly normal. Still trying to find a doctor that is willing to look deeper into this but things are looking rather bleak.
1 Like
What is your T, E2 and DHT levels at?
Last time I checked E2 with the sensitive assay it was around 24 pg/ml. Total testosterone was recently checked and it was highest it has been, little over 700 ng/dl with SHBG being around 30 nmol/l range. Now DHT I have measured twice while on nothing and both times it has been 1.00 nmol/l dont know what that measures into other units. On the other test 1.00 nmol/l was the lowest end of reference range and on the other one it was near the low end also. As a matter of fact serum DHT is the only thing that has been somewhat of a question mark thus far. It did increase to like 1.65 nmol/l while on 250IU of HCG three times a week. HCG trial did not make me feel better at all
1 Like
1 nmol/L is roughly 29 ng/dL. DHT show be 5-10% of your total T, in your case 35-70 ng/dL.
So you’re a little low, but not super low. Reference ranges differs but it’s not uncommon for them to go as low as 0.5 nmol/L.
Your E2 is also on the low side, compared to your total T, in my opinion.
I have no idea if either has anything to do with your problems though. You took AI while still being a teen, so it’s likely you both changed hormone homeostasis and receptor density/sensitivity.
How did you get hold of AI in such a young age? Your problem does sound on paper like you don’t have enough androgen to estrogens, but with these diseases we have it’s not always as it seems.
And HCG is kind of like a dark horse, it have some interesting effects but it’s hard to predict what it’s gonna do before trying. Many males increase their estrogenic to androgenic profile on it, rather than the opposite which I would assume could potentially be beneficial in your case.
I got AI prescribed by doctor to try and boost my T levels that were pretty low on one bloodtest at the time. They later tested normal but I was so fixated in getting a “harmless boost” to my T levels. It was so foolish thinking back now but at the time I didnt know better, I was clueless about hormones and the benefits of healthy levels of estrogen for example.
What is weird is that there are studies of letrozole for example which is stronger than anastrozole being used in higher doses and for longer periods of time on teenage pubertal boys for delaying growth plate closure and there are not these type of long term effects mentioned. I don’t understand how I got these effects that dont seem to go away with time.
I have a feeling though that my body is in some type of hyperestrogenic state mainly because of the itching and tingling on breast tissue and there is mild gyno I believe. But I remember trying to take AI again long time ago and it did not seem to help at all. Although I have never tried a suicidal AI such as exemestane for example. And at this point I am very afraid of taking anything that would alter my hormones especially estrogen, then again I really got nothing to lose but it would have to be for a good reason.
A doctor giving AI to a teen… Should be suspended imo.
Did you have symptoms of low T, or why did you get tested in the first place?
I feel for you, but I think it should be easier to find a cure than for people who used 5ARI.
Aromatse is mostly (only?) only active when converting T into E2, but 5AR is involved in much more than just T -> DHT.
It’s very likely you have upregulated ER, just as PFS sufferers have upregulated AR.