3-week 100% recovery with tamoxifen, crashed again, now 50% recovered

Hello everyone, this is going to be a long one! I’ve been absent from the board for a while after crashing and joining in october 2010.

Introduction and Summary

I had found the site after about a week of temporarily quitting propecia to begin a detox, effectively quitting cold turkey in October 2010. I had taken it for 7 months previously. I was planning on taking the drug again once the detox had been finished as my sexual problems weren’t that bad on the drug. About a week after quitting propecia, i stumbled across the whole idea of ‘weaning of’, ‘crashing’ and how most of the real problems begin when you crash. I had the choice of whether to go back on the drug and wean off or continue not taking the drug as it stood. Unfortunately i believe i took the wrong option and after deciding not to go back on propecia to wean off later, i crashed a couple of weeks later.

Please see my member story as it’s been updated http://www.propeciahelp.com/forum/viewtopic.php?f=3&t=4393. Please also see the thread where i was enquiring about weaning off which happened a couple of weeks before i crashed http://www.propeciahelp.com/forum/viewtopic.php?f=32&t=4338.

I agree that our hormonal systems are fragile especially when stopping taking the drug and the dht comes flooding back in to our system. Any shocks to our body when we are stopping taking propecia could contribute to a ‘crash’ and in my case i believe the reasons for my crash (the first time) were:

  • stopping smoking and alcohol wasn’t a good idea - as this is another shock to the system trying to withdraw from another two drugs
  • unfortunately i didn’t get much sleep the night before i crashed, and i had to pick up my parents early in the morning from the airport
  • the detox although i only did it for a few days was obviously a big stress on my system
  • i have a busy and stressful family life
  • i had been to the gym and pushed it too hard a couple of hours before the crash

Firstly, i wish i never had taken the drug. Secondly, i wish i weaned off. Thirdly, i wasn’t going to have a third regret. So after reading the forums, the only cure that seemed to be suggested was taken tamoxifen or clomid early after crashing. So i made a concerted effort to get one of these drugs to see what happened. I should also add i was taking very low dose mirtazapine at 15mg daily for depression.

I took my first tamoxifen tablet in early January 2011. Amazingly, after 30 mins of taking the first tablet i began to feel a change, i began to feel different, a bit more bouncy and whilst i was sitting in the car, i felt something going on in the trouser area. Sure enough i was getting a substantial erection bulging out of my jeans. I felt different and the brain fog had disappeared. I felt lighter, happier and had more energy. I played this down for a few days as i didn’t want to tempt fate. I continued one a day 20mg. Things just got better and better but i felt fully recovered to be honest within the first few days of tamoxifen. All physical, sexual and mental side effects, which had been severe, disappeared fairly instantly. I couldn’t believe it, i thought how lucky i am and i was so happy. I was getting rock hard erections every night for a few weeks that would wake me up. I was getting strong spontaneous erections during the day, in the morning and at night, all my feeling in my genitals came back, all my energy came back, my personality came back, i wasnt depressed, my genitals weren’t shrunken and tight. In short, i felt fantastic and this continued for 3 weeks taking 1 x 20mg tamoxifen per day. I was probably at my best after 3 tablets and then it continued on from there. Unfortunately, after overdoing things i crashed again after 3 weeks on tamoxifen. The usual scenario, waking up in the middle of night, feeling a rush of anxiety and then the draining feeling and rapid shrinking of the genitals. The next day i was left with some of the symptoms i had before but not as severe. I would now say i am 50% better than i was after crashing the first time.

I’ve discussed this with my endocrinologist and he thinks this was a placebo effect and he would only believe otherwise if changes had occurred after a few weeks or more from a mechanistic point of view. I completely disagree obviously. I know my own body, i know how i was post crash and post tamoxifen and the changes were incredible. I actually wasn’t expecting anything to work, i thought we were all fucked basically. The fact that my erections were so strong and i was aroused so easily even without fantasying compared to the cold shrivelled disconnected state of my genitals before, is enough proof for me for something mechanistically had occurred such as the receptors being ‘switched on’ to androgens after blocking estrogens in my body - this is only my informed assumption. The fact that i saw changes again for the worse after crashing suggests to me something further mechanistic going on, such as stress causing some sort of overload on our fragile post finasteride hormonal systems. My endocrinologist did raise the point that the tamoxifen would’t have been absorbed after 30 mins, but i don’t believe that either as i know drugs can be absorbed very quickly. He did seem to be coming round to the idea of PFS but more in terms of neural pathways rather than receptor issues which i believe at this time.

Discussion

MOST INTERESTINGLY (and this point should be emphasized to all your doctors, endos and researchers) - i was getting rock hard random erections throughout the day even when i wasn’t thinking about anything sexy or even anything at all. Things just felt so responsive and sensitive down there. AND i would get this warm feeling like something was rushing through my body (T,DHT working correctly with the receptors???). It was an AMAZING FEELING. I think now and maybe it was similar to when DHT comes back on board after quitting propecia and you feel it in your head. I got tested again during this period (see below in the my emails) for my hormone profile and there were some better values like LH and T but also oestradiol. But from what i read elsewhere it, from my own experience and from my hormone testing, the problem seems more a receptor/signalling problem. My GP agreed. I wasn’t expecting this at all, i was thinking something might happen a few weeks down the line (as suggested in other recoveries) after starting tamoxifen, not the first tablet!

UNFORTUNATELY, when i crashed after 3 weeks, i wasn’t expecting this either. I was thinking something negative might happen once i stop taking the drug not whilst i’m still on it. I had been travelling about a lot including a trip to look after my nephew, not much sleep etc. I also went to see my GP to tell him about my recovery and maybe got bit worked up as if to prove a point. I did the same with my mum. There was also family stress around again at the time. I maybe lost sight a bit of the fact that i should have been trying to stay recovered and taking care of myself rather than trying to get listened to almost to prove a point to my doctors and family members. This crash wasnt as bad as the first i had (well i’ve felt like i’ve had a few) both before tamoxifen and after. It almost feels like its like a light switch flickering the power only working some of the time. All the usual symptoms happened, the shrinking, draining etc. - it woke me up in the middle of the night, when crashes seem to occur mostly for some reason.

I continued taking tamoxifen but i saw no further improvement so stopped it within 1 week. NOW, i feel halfway between where i was during those 3 weeks and the previous 3 months post crash. Thankfully the genital shrinkage which i probably hated the most, is much better and i get regular erections although they are not rock hard. The brain fog has completely disappeared. Everything else is about 35% - 50% better. It would be REALLY interesting to see if more people taking tamoxifen had the same experience as myself, not just those that have recently quit propecia but ALL OF US? Obviously there are risks with taking more drugs so it’s up to each individual. I want to EMPHASISE, that i probably only needed a few tablets to make the switch rather than a whole month which i did.

Interestingly my hormone results were much better after recovering but that’s what tamoxifen does. I had testosterone taken at about 30 before crashing. I had a full hormone panel taken twice after crashing where my testosterone was about 17.5 and 20. I had one full hormone panel taken 3 weeks after recovering and my testosterone was about 25 and lh and fsh were better. However, i’m not convinced hormone tests are that useful. The main problem i believe, and this has been discussed on the forum, seems to be more insensitivity to our hormones. Possibly it is a problem to do with some malfunctioning of the receptors when dht returns to our bodies. It is possible that tamoxifen somehow switched on my receptors as the change in my symptoms were so sudden. Tamoxifen blocks the effect of estradiol so it therefore could have awakened my receptors to testosterone and other hormones. There hasn’t been many reported recoveries and those that do exist seem to differ to mine. Other recoveries seem to depict a gradual recovery after taking clomid. I must admit, i doubted the credibility of some of the stories and i still do. However, from first hand experience, a recovery is possible. I’m not sure if clomid will do the same as tamoxifen. I’m not sure if it matters how early you take these drugs after crashing. But i don’t believe it matters how bad your symptoms are, because i couldn’t imagine my symptoms being any worse. For example, the tight, cold and shrivelled penis and balls couldn’t have been any worse. Now it is much better and during my recovery i think they were as big and sensitive as they have ever been. My erections were ridiculous and and i thought something was going to burst down there.

I took tamoxifen over clomid because of the lesser links with cancer. I am surprised there are not more recovery stories as there seems to have been a fair amount of tamoxifen use. Sometimes i question if whether my recovery was real as i do with the circumstances under which i crashed (both times). But i can assure you everything is real.

I’ve been following all this talk about cures and JN and awors efforts. As far as i am concerned, one drug, tamoxifen, worked for me after taking it early after crashing. I still hope it will do the trick at some point in the future but i am probably pinning all my hope on awor now as well. Some days i forget i have pfs, it is really only the sexual sides that bring it home to me. But tamoxifen could be the simple answer if we could somehow prime our body for it’s use in the future. When i started taking tamoxifen i was eating really healthy, wasn’t smoking or drinking and wasn’t feeling any stress as i felt a bit like a zombie. I believe the key issue may be, that i was so insensitive to my hormones, that a switch was possible to my previous sensitivity. I live in hope that by altering to a more healthier lifestyle, i may achieve the same results as during those 3 weeks where i had no symptoms. I’ve thought about taking propecia again, even to try and induce another crash, and then trying tamoxifen after. But i’ve decided against it as i may sacrifice my current position which i’m actually fairly comfortable with.

Hopefully my experience can also be looked at by other researchers, doctors and theorists (you need to show them!) and possible mechanisms and treatments can be found for all of us. IT SHOWS THAT PFS IS REVERSIBLE. Hopefully something can be done for all of us in the future, especially those that have had PFS for a long time after quitting. I’m planning on taking my story to other professors in the UK whom are endocrinologists but also have research interests that are close to our problems at the molecular level. I have found 2 that i’d really like to speak to. At some point in the future, I may contact other UK sufferers to maybe form a group and share the costs for dialoging with these doctors. This group could also pursue issues from a legal and publicity perspective as well. Strength in numbers.

I have copied the emails that i have sent to my endocrinologist in 2011 - these are not essential to read as it just repeats much that i have said. But i’m including them to corroborate my story further for anyone that may have doubts about my story. There is detailed and accurate information on my experience in here as well as things like my hormone results.

I’m ready to answer the thread now with any queries. I’ll log in over the next couple of weeks to do so. Please don’t PM me unless you have confidential queries that you’d rather not have displayed on the board.

Emails sent between January 2011 and July 2011

Sent: 18 July 2011 12:19

I wanted to ask you if i could pay for a phone appointment with you, 30 mins would probably be enough? Or, if you think it would be worthwhile, i could visit you in again although to be honest i’m not feeling a trip.

Basically, i’m not sure what my next move is. The ‘Post Finasteride Syndrome’ (PFS) concept seems to be gathering pace on various fronts. The Trasih et. al publication in the Journal of Sexual medicine and the Irwig study at University of Washington seems to have achieved a lot and there is talk that PFS is now official - i don’t know if that can be said to be true, especially in the UK. There is also a molecular study being carried out on PFS sufferers in Europe with the backing of various parties. It sounds promising and i think they are basing the experiments around AR signalling theories. In my mind there is no question that something goes wrong when the DHT starts returning to the body. I am basing this on my own experience with stopping taking this drug and the fact i have experienced such pronounced changes to my body and mind that match the stories of thousands of others on the propeciahelp.com board.

From a personal point of view, i haven’t made any further improvements since February. I’ve tried taking tamoxifen 20 mg again, first waiting 1 month and then 3 months since i ‘crashed’ after the 3 week ‘recovery’ i had. I only took a few tamoxifen tablets each time, as if you remember, i seemed to recover almost instantly from taking the drug for the first time. I’ve not got any clear idea as to why tamoxifen won’t do the trick now. I have started smoking again and eating less cleanly than for the first 3 months after my first ‘crash’. So maybe this ‘pollution’ is dulling my hormone receptors. I also mentioned to you before about how drugs like clomid and tamoxifen have been shown to work soon after ‘crashing’ for the first time ie within 6 months, and it is now 9 months for me. Maybe my system isn’t desensitised enough to make the ‘switch’ now. This is all guessing of course. I was hoping you would have some ideas of possible mechanisms or more importantly other drugs i could try to try and get me back to where i was for those 3 weeks?

I will say that i was having these panic like episodes through the night for a long time after my last crash, as if i was about to have another crash episode. It would just be a case of me waking up and then there would be a quick build up of tension before a final shock/ release at the end. But nothing was changing physically such as the rapid genital shrinkage as in previous crashes, so thats why i am calling them panic like attacks. Maybe it was my system trying to get back to a previous state - it was like my current state intermittently malfunctioning - like a light switch flickering on and off.

If i could quantify my improvement percentage-wise, from where i was the first 3 months of suffering PFS and where i am now (where 100% would be fully back to normal) it would be the following:

physical
energy 40%
genital shrinkage/ form 40% - i still get the rapid shrinkage and tightening within 10 secs of exercise at the gym (normally things would loosen and expand in my case) - i hate this the most - and things shrivel up and tighten up randomly for periods of time although it is not as bad as before
fatty deposits 40%

mental
depression 40%
brain power 60%
brain fog 100%

sexual
frequency of spontaneous erections 50%
strength of erections 40% - its like the supply of something being cut off
libido 40%

Please remember, during those 3 weeks after first trying tamoxifen all these values i would have put at 100% and in the case of frequency and strength of erections, i would say they were 110% and better than they have ever been in my life - it was actually a bit concerning.

Also of interest to you might be the full hormonal profile i had done on the NHS in the morning on 11 january. Interestingly, these numbers were taken 1 week into my recovery after taking tamoxifen:

total t3 - 2 nmol/L (0.9-2.6)
lh - 10.5 U/L (1-9)
fsh - 3.3 U/L (1-9)
oestradiol - 217 pmol/L (up to 150)
prolactin - 336 mU/L (up to 350)
testosterone - 24.5 nmol/L (7.6-31.4)
shbg - 31.4 nmol/L (15.4-63.8)
free androgen index - 78.03 (24-104)
tsh - 4.64 mU/L (0.4-4)

Comparing the results to the last set of results i had done in December, the LH is increased by 100%, oestradiol is increased by 75%, prolactin by 300% and testosterone by 50%.

I’m really concerned by the continual overlooking of the PFS issue especially in the UK. Things seem to be changing in America for example and more and more doctors and consultants are taking it seriously. On the web, a search for propecia/ propecia side affects brings up so much material now that it puts a real question mark about the safety of the drug in my opinion. However, take the MHRA for example, i’ve written to them about my issue and recieved a reply basically saying the drug can cause a lot of the side effects that affect me now. But i feel the MHRA and the wider general community in the UK anyway, seem to be missing the fact that it is when people stop taking the drug that things go severely wrong. I don’t believe any medical leaflet on finasteride warns us against the side effects appearing, worsening and continuing once stopping the drug. Or about the genital shrinkage and brain fog. There seems enough information and testimonials around for some sort of warning to be made at least, even if it is through doctors. I’m sure since i was affected by this, there have been more people who have been affected by PFS. I find it unacceptable that such a serious problem is being ignored. What does it take to get noticed with this? I feel my life and others have had their life ruined because no-one has listened to the others before us and in my case it could have been prevented. You’ve even mentioned yourself that the MHRA have been warned by you on this issue, and it seems to be falling on deaf ears.

I’m wondering if you knew of anyone else in the medical community that may be worth speaking especially due to their research interests - molecular mechanisms, gene mutations, hormone receptor signals, hypopituitary, hypogonadal patients etc.?

Also, did you ever hear about the Adiol G result?

Thanks

Date: Thu, 14 Apr 2011 20:30:54 +0100

Just to update you. I still feel midway between the way i was oct-dec to the 3 weeks of complete resolution of my side effects after taking tamoxifen.

Nothing much has changed since the last email. My mood is ok although it can swing to being severely depressed (i think more down to my general life at the moment and living with my parents). The brain fog has gone and my brain function seems back to normal as previously mentioned. My energy levels are ok although this can swing as well to having low energy for no apparent reason. My old character has come back in some areas but things like confidence, humour and appetite for life are lacking. I think these deficiencies are related all to the diminished sexual function i have. I don’t have my testicles clinging really tight to my body all the time but they don’t seem to hang like they used to. They also still have the tendency to droop really low and feel very light when this happens. The testicles also still seem smaller than what they were before i crashed. My penis isn’t as shrunk, cold and lifeless as it was but it doesn’t look the same size or feel the same way and doesn’t respond like it did. Erections - i have mediocre erections through the night and can have spontaneous erections now. They still feel half hearted and take time to happen and then go away pretty quickly. Full erections are at least an inch shorter than pre-crash length (or during the 3 week full recovery). Similarly, they are not as hard, red or as bulging as they were during the 3 week full recovery. My penis has the tendency to shrink now and again like my testicles.

I tried upping mirtazapine intake, but i was in a lousy mood at these higher doses - i felt in quite a dark place and very touchy. I have stayed on 15mg because it seems to put me to sleep easily. I might stop it soon though too see if it lifts my mood and too see how i am without it. What do you think?

I tried taking tamoxifen (3 tabs over 3 days) again after being off it for a month, but i didn’t show any improvements. I tried again after leaving it for a few weeks (7 tabs over the week), and i did feel something going on around my genitals and subsequent random erections, but they were soft and about half erect. Then no noticeable improvement. I want to try tamoxifen again after a few months of not taking it and see what happens. What do you think?

Hopefully i’ve made it clear how i feel about taking tamoxifen. Thinking back to january, i remember minutes after taking my first 20mg of tamoxifen and sitting in the car and having these random spontaneous erections in my jeans for the 30 minute journey i was making. Over the next few days i was getting erections in shops, when i was walking without thinking anything sexual. Then if i did think about anything sexual or look at attractive women … fantasizing … i would get these strong bulging erections - almost too strong like if you take viagra - although maybe i’ve forgotten what proper erections should feel like. The warmness this brought to my body was amazing and it was like i could feel my brain and body tuning in to life again - almost immediately my brain became sharp again, the brain fog disaapeared and my brain fuction accelerated as did my energy levels and bounce to life which continued over the 3 weeks. I had loads of energy together with a spring in my step and a certain cockiness. I could feel my penis responding and stretching randomly - this had been non-existant over the last 3 months. At nights it was confirmed to me when i would wake up and feel these rock hard erections, and the deep satisfaction that brought. I was convinced before that there is something else rather than just depression, due to my story being too similar to other peoples on propeciahelp website. This is has just reaffirmed everything for me. Unfortunately, like i have said, i had another crash episode after being under stress and overdoing it. I don’t feel the warmness and the cockiness that i did when i was having the strong and more frequent erections. Although i realize (and i’m thankful) that the body is responding and functioning more like it used to and there is therefore not a big improvement needing to be made.

I see there is a lot more publicity even within a space of a few months regarding propecia side effects. Some of the authors of the studies are postulating possible damage to nerves. My local GP has suggested damage to the receptors. I’m thinking tamoxifen has possibly awaked my receptors or nerve endings to testosterone and dht by blocking oestradiol. In this respect, only a few tablets would have been needed rather than 21 that i took. I don’t think anyone is looking at things from this angle, people and doctors are thinking it is all about taking clomid or tamoxifen over a significant period of time to raise t levels or to restart the system. Have you got any possible theories on what could have happened to me? Do you believe me?

Even writing this i wonder if everything i’ve experienced is real. To end up in the situation i have after reading about it, then to have what felt like a full recovery both seem far fetched to me, but to happen together seems ridiculous. But i want to stress i am not exaggerating events and everything i’ve said has been as accurate as i can make out.

My big worry is that i won’t see any further improvement and i’ve missed my chance of a full recovery. Knowing that i am not functioning properly sexually, is depressing in itself and in my case and probably most other men, affects confidence and energy for life.

Thanks for listening

Sent: 31 January 2011 14:36

Since last wednesday night when i had a crash episode, i have felt as previously mentioned, at a halfway house between where i was initially and the recovery i had made on 3 weeks of tamoxifen. I seem to be fluctuating more to my previous state and i think i have had another mini episode. Most of the previous symptoms have appeared again yesterday and today: the enormous fatigue, the complete lack of mental power and character, i feel depressed again and lifeless, i don’t want to leave the house, my sleep is as before awakening in the night and in and out of sleep, feeling like i could stay in my bed forever and even finding it hard to get out of bed, erections have been very mild throughout the night and i am unable to get aroused again. The devastating thing is i felt i had made a full recovery from all side effects. And then i think it is stress to my body that causes me to throw everything back to the start again. I was travelling a lot, babysitting etc., i wasn’t getting enough sleep, travelling was tiring, i did too much when i got home the next day as well as going to my G.P and explaining how i have been the last month (which was hard), then my Dad was being difficult to deal with the night i crashed which i believe must have pushed me over the edge. The last couple of days i’ve had other minor symptoms coming and going, like headaches, slight heart pain, shaky legs and dizziness. Strangely though the physical appearance of my genitals have kept there size, shape and feel to touch not shrunken and fibrous as before.

You probably get by me writing to you like this and in this way, that i am very anxious which may not be helping matters. I feel a bit devastated though after everything was going so well. I was even looking in to getting a mortgage and things like that. Now i feel in this zombie state again, that i can only describe like a very slow death, i don’t see much of a future like this.

I am also thinking that tamoxifen is maybe making this worse now, as the negative side to it seemed to be making me feel slightly sick and flu like that i feel may be compounding my previous symptoms. I don’t seem to be getting any sustained positives from it now that were over-riding these factors. When all my symptoms had disappeared, it felt partly due to me building some momentum up and believe that that this recovery had happened and was real.

Could there be some sort of change that has occurred with my receptors (especially when i had the initial ‘crash’ and subsequent smaller episodes? Or is it a sensitivity issue related to the receptors/ hormones? I am wondering if stopping the tamoxifen again for a while and then restarting it to see if it awakens my receptors again like a shock?

Thanks - i just feel the need to update you on this as soon as possible.

Date: Sat, 29 Jan 2011 20:06:16 +0000

I am writing to tell you how i have been and my latest developments which have been amazingly positive on the whole. I have documented everything as accurately as i can after observing my body very closely over the last month or so. I have updated the diary below mostly as events have occurred. I feel i need to emphasize to you the truth in the events described below and that nothing has been concocted up i my head or by any sort of placebo effect. I haven’t fabricated any of these events. In a nutshell, i believe tamoxifen is making all my side effects go away. I feel alive, i feel the need to be busy, i have vigour about my daily tasks, i think about everything, people, relationships, my mind is racing, i laugh to myself, i am cocky……this all coincides with my genitals feeling sensitive, warmer, back to normal size and appearance as well as regular erections and things feel like there responding and moving about down there.

But i feel in a fragile state where on a couple of occasions i have this crash effect (or panic attack) just like before with the accompanying physical, mental and sexual side effects. On the first occasion a crash happened (coming 3 weeks after i started tamoxifen) , it came after going to my G.P to tell him about the latest developments (which was stressful as i feel i am trying to convince people the realness of what is happening to me) together with a fairly stressful family day. The side effects which were as before, lasted for most of the next day but then the side effects resolved again the day after. I want to stress the dramatic change that occurs when i crash, i feel dead to the world, i am apathetic, i feel slow, stupid and my genitals shrink and there is no feeling down there, there is this phenomenal fatigue and everything seems a task. Even my sleep is the exact same pattern as when i had these side effects before. I also want to stress that the depression comes as an accompanying symptom after i crash. I only feel depressed when i am this ‘crash’ state therefore i believe depression is not a cause of my problems it’s a symptom of whatever is happening to me.

Diary start - 5th January

After a week of mirtazapine at 15mg a day, i felt a little better and had a slight to moderate improvement across the board in sexual, physical and mental side effects.

After a week on mirtazapine, I then began tamoxifen at 15mg a day and the next day I had, what feels like, almost complete resolution of all side effects including most strikingly: regular, very spontaneous, strong and persistent erections in the morning, throughout the day and at night. Libido feels back, I have energy and aggression back (maybe more than normal). My penis feels fuller, back to its normal state and size, is very responsive and is not numb anymore. I have that connected/ tingling feeling back down there that I haven’t had in 10 months. My testicles are slowly getting back to a more normal state although I am not sure about this. I think they feel different, warmer, a little bigger, a little heavier, less tight than they were before treatment and I feel like they sit better in themselves. However, they still on many occasions feel tight to my body and smaller from what I remember, especially when I am out in the cold (when it can feel uncomfortable to walk) or I am busy or in the shower. The strictly physical side effects, mainly fat gain in buttocks and midriff, I would like to say are not as bad as they were, although maybe this would be ‘in my mind’. I feel my mental function is back, I think clearly and quickly now and everything feels normal. I feel like my old self, my character is back (good and bad sides) and there is a sense of deeper well being. I feel my mood on the surface is better, although I maybe don’t show it as I am anxious about regressing back to my previous state. Overall though, I feel a much deeper satisfaction with myself and with life and I’m really positive about the future now.

On the negative side, I am not sleeping great but I get to sleep fairly easily and I feel more refreshed than I ever have over the last 3 months. I feel a bit nauseous consistently throughout the day and I’m also on edge although I understand this is a side effect of tamoxifen and should disappear over the coming weeks. My aggression seems above what it is normally and old things that annoy me can get me wound up again. The last few months, these things hardly crossed my mind, so I take this as a sign I am feeling normal again. I also feel I have a lot to lose at the moment, after making such a recovery, therefore I am more on edge and not willing compromise with people much, if a situation will put me in a vulnerable position where I will feel aggrieved.

I am a bit shocked as to the sudden improvements and I wasn’t expecting any improvement to be honest. I am quietly ecstatic, although I am anxious as too how to proceed with the treatment in the future. I still feel vulnerable and don’t want to reverse to my previous state, as I believe a reversal can happen once stopping via a so called ‘crash scenario’. I believe this can happen to PFS or bodybuilding patients who tryout drugs such as tamoxifen or TRT in trying to correct similar drug induced side effects. However, I understand there are health risks with continual tamoxifen intake such as possible cancer links.

I believe resolution of many of my side effects have been achieved mainly by tamoxifen. I believe mirtazapine has contributed as well. I don’t discount that mirtazapine could be wholly behind these improvements. I feel mirtazapine is good for relaxing me at night and then I feel drowsy and go to sleep easily.

I can’t see how testosterone could have increased so much within a day or 2 too bring about these improvements. Therefore could it be tamoxifen’s effect on oestradiol, together with a week on mirtazapine that has brought about a resolution of these side effects? I viewed my oestradiol as being high and testosterone as reading low.

12th January

2 weeks on and 1 week on from starting mirtazapine and tamoxifen respectively, things are the same if not better. At this point I got a full repeat of the bloods tests done on the NHS. I am awaiting results.

I do have slight aches in certain areas of my body, such as the testicles, midriff, sides, top and lower buttocks and lower back. There is also a slight burning sensation sometimes in the penis.

My blood pressure remains high at about 140/90 – the stress of all this – should I take something for it?

Wed 27th January

After a fairly stressful day and week, and 3 weeks on tamoxifen, where I have felt completely back to my normal self in every way (including a return to normal/increased size, hang and appearance of testicles NB this was the last of the symptoms to get better, after a week of two they seemed back to normal) I woke up in the middle of the night and crashed/ had a panic attack and symptoms as before reappeared. After a few hours things seemed to be going back to normal. When I woke up later on thursday morning, I felt at a ‘halfway house’ between where I was before and the last 3 weeks. I took my tamoxifen for that day and soon after felt the crash symptoms come back gradually especially the shrinkage in genitals, being the most obvious one. 1 hour later, I started to have fairly strong spontaneous erections again, that brought about a clarity in my thinking and lifted my mood quite strikingly. I still feel at a ‘halfway house’, things are fairly shrunk up down there and my mental clarity isn’t great. The brain fog seems to be present again, when it clears it’s kind of like your ears being blocked then popping. Fatigue is back which is depressing in itself. It’s like a heaviness, everything feels laboured. It feels like I have gone back to square one again. The next day things have symptoms have resolved themelves again. The day after i have a mini crash. Things resolve themselves again 1 hour after mini crash.

  • End of diary

What I am also noticing with all this, is that when I begin to have erections again, it brings about a resolution of my other symptoms. It also gives me a warm felling in my body. This is opposed to the draining and unsettling feeling I get when things shrink up.

I strongly feel after observing my body through all this, that tamoxifen is bringing about any sort of recovery I am having at the moment. I don’t feel the need for an antidepressant although it is good for my sleep.

I am scared of these crash/ panic episodes keeping on recurring and the tamoxifen stopping working eventually. I am scared I have a window of opportunity to get a permanent recovery, if that is even possible. Some people on the propeciahelp board believe, after hearing each other’s stories, that that drugs such as tamoxifen only work within 6 months of the first crash but they have shown to only work for very few people. What happens when i go over 6 months, will things stop responding for me somehow?

I fear there is something permanently wrong with me, possibly damage to the receptors that is bringing about such a rapid change in physical, mental and sexual state. Again it is just an guess but when dht is returning to the body when we quit propecia, does the receptors get damaged somehow or desensitised or methylated? Everyone on the propeciahelp board seem to be affected to different degrees, some seem to have more sensitivity to therir hormones than others and some have no sensitivity. Could i have enough sensitivity left, that blocking oestradiol allows my testosterone to work better for me.

Or what damage is done each time a crash happens? I feel too much stress and tiredness is possibly contributing to these episodes.

Can anything be measured or observed medically that can help understand what is happening to me? My endocrinology even? Will the adios G result be useful?

I know I have to come off tamoxifen though, probably fairly soon due to possible cancer dangers. Would any other drug bring about the desired effect that could be used safely for a long period of time? It might just be a case of lowering oestradiol. Would HCG be of use? Or other drugs like clomid or arimidex/ aromasin?

The big question is whether my system can work well with no side effects without any drugs. Before i crashed on tamoxifen, i was hoping this was me ‘cured’ now and this is what i discussed with GP. But these sudden crashed i have had are suggesting to me like i have said a possible permanent problem with my receptors whereby i will continue to keep having these negative reactions and only drugs like tamoxifen can brig a relief to these symptoms. However, i wouldn’t be happy about taking a drug long term if it were to even slightly increase my chances of getting some sort of cancer.

I am very interested to hear your comments on the above and if you can answer any questions for me. I would welcome another meeting with you face to face or over the telephone. I will of course pay you for either and for any correspondence by email.

There also seems to me more and more publicity and academic focus on long term side effects of using propecia. There was a bbc report on it recently, as well as a canadian class action lawsuit against merck being filed and i think i read somewhere that Merck are even changing there pamphlets in the propecia box to include possible long term negative side effects. It only seems to be in certain countries and i’m not sure if it has happened in Britain yet. More importantly, there has been a scientific paper published which i will give you a link for, which will hopefully encourage research on the matter.

It’s in the journal of sexual medicine by Traish et al. published 22nd dec 2010, onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.02157.x/abstract

Sorry for the length, and sometimes cluttered email, maybe a face to face discussion is best once you have read this.

Thanks,

Hi mate

Another member from the UK

It woudl appear theres atleast 40-50 cases of PFS in the UK. Probably alot more. THis concerns me - i think there is a very disproportionate amount of guys from the UK reported PFS. What the heck? Are we more predisposed to this? Very possibly.

Anyway, i think you mightnt be a difficult to treat as many others.

You took tamoxifen and got great results. But unfortunately things wore off. They always seem to.

You estrogen level and prolactin levels are very high. Ultimately i think you hit a good point of estrogen levels in comparison to testosterone levels etc originally but then shot way past your optimum.

You would likely strongly benefit from bringing your estrogen back into range.

You could use arimidex or aromasin to do that and go from there.

Hi thanks for your comments. I hope for all of us. I hadn’t thought too much about why i crashed while on tamoxifen after i had made a full recovery. One reason i strongly suspect is that i raised prolactin levels and that somehow overloaded my very sensitive hormone system post crash. I have quite a stressful family life. I really believe if i had had taken it easy a bit more i could be home and dry with this. Maybe i should have came off the tamoxifen after 3 weeks but i was thinking i had to be on it for a few months. Maybe like you say my testosterone end estrogens got out of balance and overloaded my system.

The key thing was that i felt recovered after 30 mins of taking my first tablet. It is possible tamoxifen switched on my receptors. The values of all my various hormones surely could not have been much different to when i had all my symptoms. Therefore values do not concern me that much. I may experiment with aromasin etc. to bring my estrogens down and see what happens however.

viewtopic.php?f=5&t=5604&p=44427#p44427

‘notcrashedyet’ - did you get a reply to any of your emails you sent your endocrinologist???

‘Please leave me alone’?

I wouldnt be surprised, his post reads like a total lunatic-hypochondriac (better after 30mins with 1 pill of tamoxifen, 1 hour mini-crash, etc, etc, etc.)

‘notcrashedyet’ - I know who the person you emailed must be [EDITED for privacy of that person].

Tell me the following information:

  1. Did he ever respond to your emails. 2. Did he ever request these emails. 3. When did he stop responding to your emails (if he ever did).

Sadly, i quickly learned that even the most accomadating medical profession won’t have time for elaborate emails. It just isn’t realistic.

The cards are certainly stacked against us. That said i got loads of stuff out of my endo because getting fed up (on both ends) with the lack of rapport. Gotta play the game.

I will reply to this, but only you only because you badly misunderstand my line of questioning.

Is this person sending unsolicited emails about his “shaky legs” along with detailed descriptions of his penis to the one person in the UK that might actually be able to help?

Luckfax - i’ll take your comments with a pinch of salt.

Oscar - you seem to be a bit more obsessive so i’ll take a bit of time to answer you. Dissecting your symptoms and sharing your experiences is one of the few tools we have for building up a picture of this problem to each other and our doctors. I feel in tune with how my body works and have paid close attention to how i’ve been with all this and especially how i’ve responded to tamoxifen. The fact that i made a full recovery was pretty obvious to me. The fact that i malfunctioned after a while was pretty obvious. It hasn’t been a black and white experience, more of a rollercoaster. Everyone is entitled to their opinion and if explaining myself in detail makes you doubt my story, that’s up to you. You’ve made your point and your not that important to me so kindly move on. However, the manner in which you’ve made your comments speaks volumes for you. I hope i never have the displeasure in meeting you in person. When someone is trying to to do their best for the greater good of this forum, try and conduct yourself a little bit more constructively. With attitudes like yours, we would go nowhere with this.

Since crashing and entering in to the depressing world of PFS, i’ve only been interested in trying to fix this problem with the best information that is available on this site. I wasn’t going to allow myself to be brainwashed in to how my endo viewed my symptoms especially when he made it quite clear at the beginning that he hadn’t bought in to the idea of PFS. Critically for me, the advice on this board seemed to suggest trying tamoxifen early after crashing could be as good an answer to a cure as there was one. Ironic that luckfax was one of the guys that i seemed to remember was harping on about this. In my case, i (and luckfax) have been proved right with this. If the price for this is coming across as bit of obsessive about it, so be it. Trying to communicate this problem is hard enough never mind trying to get doctors to help or believe you. I’m sure many people on this board would happily trade places with me. I hope my experience can now inform this community to help others and to find a lasting cure for all of us. If anyone wants to pour scorn on that, i despair. I don’t believe any doctor is more useful than the collective effort of this board, who are in the thick of the action. Realistically, there is scant info available that reports recoveries to any significant degree and any reported recoveries don’t go in to that much detail. I can’t put that much trust in to stories that don’t go in to that much detail, since there is no way of quantifying recoveries never mind the fact that i’ve never met the person or know anything about their symptoms. I can’t see it any other way. The reason i took tamoxifen was based to advice given on this board. My endo prescribed me tamoxifen. That’s about all he’s done.

The endo has no problem with me sending emails or describing my symptoms. We agreed to stay in contact because i live 500 miles away from his clinic. Talking about my penis isn’t off limits as it’s part of the problem. If you are embarrassed by this, you need to take a reality check because until that starts working i doubt whether you will ever be cured of your PFS symptoms. Yes he replied to the emails, i’m still in contact with him and i edited them for privacy reasons. I don’t see the point in you asking about this.

I’ll also add that it took me 4 months to wear my endo down to prescribe me tamoxifen, than goodness for my perseverance!!

I can see where you might feel i’ve been suffering from hypochondria. Paragraphs like:

'Wed 27th January

After a fairly stressful day and week, and 3 weeks on tamoxifen, where I have felt completely back to my normal self in every way (including a return to normal/increased size, hang and appearance of testicles NB this was the last of the symptoms to get better, after a week of two they seemed back to normal) I woke up in the middle of the night and crashed/ had a panic attack and symptoms as before reappeared. After a few hours things seemed to be going back to normal. When I woke up later on thursday morning, I felt at a ‘halfway house’ between where I was before and the last 3 weeks. I took my tamoxifen for that day and soon after felt the crash symptoms come back gradually especially the shrinkage in genitals, being the most obvious one. 1 hour later, I started to have fairly strong spontaneous erections again, that brought about a clarity in my thinking and lifted my mood quite strikingly. I still feel at a ‘halfway house’, things are fairly shrunk up down there and my mental clarity isn’t great. The brain fog seems to be present again, when it clears it’s kind of like your ears being blocked then popping. Fatigue is back which is depressing in itself. It’s like a heaviness, everything feels laboured. It feels like I have gone back to square one again. The next day things have symptoms have resolved themelves again. The day after i have a mini crash. Things resolve themselves again 1 hour after mini crash.’

I never edited the emails as they were really there just to back up my story. They were written as things were happened and i maybe got a bit carried away in places. However, on the whole they are very truthful and i feel i’ve done a good job describing things. When i talk about ‘mini-crashed’ that’s exactly how it felt with fluctuating shrinking/crashing feelings. I think i did say it wasn’t essential to read the emails. Oscar, you seem to have done the opposite and magnified them.

Yeah i had to work on my endo to give me arimidex. He was also willing to try aromasin and clomid. The first time i spoke to him he said those things weren’t even worth discussing - he was completely opposed to such treatments he had zero experience with.

I continued to work on him and i sent various emails, he was very receptive for a while although i think he kind of gave up with me in the end. That said i think it’s better doing that than doing nothing like a good proportion of this forum.

Anyway, i think more of this board should learn to help themselves. And by that i mean exercise and hollistic diets (if necessary). Exercise, exercise, exercise - in a systematic way to help slowly upregulate your body and give it a good chance of natural recovery.

I didnt want your life story. Just answers to the 3 questions. (yes. yes. no.?)

So… a senior medical professional who sees hundreds of patients on the NHS and Privately, six days a week (and who you saw on a private basis) is now willing to keep on giving up his time for free to respond to you, despite the fact he only gave you anti-depressants? Perhaps he asked you to keep a diary with the anti-depressants, but that all, its pretty clear none of your emails make any references to his responses to your earlier emails.

Doesnt it damage any attempts at collective efforts if you selfishly decide to continually send strange unsolicited emails to this doctor?

Oscar, the endo has earned himself a princely sum on a private basis. As i’m sure you’ll be aware, doctors do private care for the money. We agreed to stay in touch by email. Yes he maybe got more emails than he bargained for. This endo is a human being and doesn’t feel the need to charge by email. My emails haven’t caused him to abandon our cause (if he was ever part of it). He still loves us but he thinks your a dick.

Have you did anything on the PFS front in the UK? What endos have you met up with, discussed PFS with? What urologists? Have you spoke with universities?

I order full disclosure on your efforts, because all i see is hot air.

notcrashedyet,
The panic attack while on a Serm may be caused by too much pregnenolone being diverted to DHEA->T rather than to boosting neurotransmitters. I had the same problem while on clomid in 2010. Supplementing with pregnenolone may help.

Regarding feeling the effects of a Serm right away, I believe you. I feel the effect of clomid (which has a similar half life of Tamoxifen) within 2-3 hours.

m-81 - thanks for your comments. I’ve got a list of drugs i’m wanting to try, i’ll add pregnenolone to that list, getting them in the UK is another matter. I haven’t decided yet how i’m going to do it. Would be interesting to see how other drugs affect me. I’m thinking i may improve my symptoms but getting back to 100% may be pushing it. If the underlying problem is receptor based or something similar, i’m thinking i’ve maybe missed my chance for the moment to get back to 100%. It may well be that tamoxifen and similar drugs can only work as an absolute cure if taken early after crashing. WIth regards to the panic attacks i’ve described, these were really occurring towards the end of my tamoxifen use but have become much more prevalent since i stopped it. They only occur at night just as i’m about to drop off to sleep. If you can remember what your crash feeling was like, the rush of anxiety followed by a ‘pop’ and then the shrinking genitals and draining/unsettling feeling - it feels similar to that. Although i don’t get the shrinking, the episodes are brief and not that bad at all. It’s really strange. I can go to bed quite happy and calm and then they can start happening. Sometimes they go away for weeks. On average, maybe 2 or 3 a week.

m-81 - I’m not sure how tamoxifen exactly works etc. My knowledge of it is pretty basic. I will probably read up about it at some point to see if i can piece together possible mechanisms etc. However tamoxifen is intended to work, i’m not so sure that this was the pathway that led to an almost instantaneous full recovery that i experienced. I know for example bodybuilders use it for restarting their hpta when they overdo it on steroids and it is used in women to induce pregnancy (i think) and as a cancer treatment (i think). That’s why i was expecting to be on it for 3 months or so and i think my endo was thinking that as well as he gave me 3 months worth. I was only give tamoxifen as a trial for my own sake. I wasn’t expecting anything to happen to be honest, but if anything, i was expecting a gradual recovery once my testosterone increased. In the end i only used it for 3 - 4 weeks because in that time i experienced a full recovery, followed by a crash and then plateauing somewhere between a full blown recovery and full blown PFS. Tamoxifen wasn’t doing anything after i crashed the 2nd time, and if anything was making me worse as i think i was feeling a bit sick on it. I’m thinking it is possible that our problem is receptor based (possibly based around awor’s theories) and that tamoxifen somehow switched on my receptors. Because i took tamoxifen early after crashing, i’m thinking it is possible that our receptors are will only return to their previous functioning levels if a chemical intervention is used early. I’m really interested to see if anyone else could replicate my results with tamoxifen. It could be that tamoxifen, by completely blocking the effect of estradiol, awakens our receptors to it’s opposite numbers, testosterone and dht, so that those receptors (the ones that have been affected by PFS) are somehow activated more. This is all guessing really, but it seems plausible to me. Maybe things will become more evident once i’ve read up more. I haven’t read into receptors too much, but i intend to.

@notcrashedyet

The fact that you had to take tamoxifen to get that bouncy chirpy active creative feeling tells me that you needed some external stimulus to get rid of the low levels(or unbalance) of some particular hormone. (DHT, estradiol or watever). I had a same feeling with me exactly 11 days after quitting finasteride. In your case the crash had come after some time of quitting. For me it came the next day of quitting. I never too tamoxifen or any other medicine, but kept on taking multivitamins (though irregularly). You might have needed that external stimulus to get to that mental/ physical state. While I didnt, and it came naturally from normal body response. I believe after taking one dose of tamoxifen even if you would have stopped it, you still would have been in a similar position. I also think I am kinda 60-70 percent recovered from my crash, after thinking almost 100% for a period of 3 weeks. After that even though I did not crash, the erections went down again to like 80% though other symptoms did not recover. I do feel low on libido for a whole day or two if I have too much sex at a stretch (masturbate 2 times and intercourse 4 times after drinking like 2 pegs… I believe that is too much for my body right now.) I still think I am in a recovery mode and things will get better with time. I have set my sight on 2 months and then the 6 months mark to see what are the possible options. Post finasteride I havent taken any drug to cause any issue with the endocrine system. And except the sexual sides where they are like 80%, most of other sides have gone away. Also when I say 80% erection, it means either by kissing, playing with girlfriend or when she is not there then slight manual assistance but not random, spontaneous arousal. I wish that we could stay in that “recovered period” for always.