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

Therapeutic Efforts Pharmaceutical
#3

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.

#4

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

#5

[Size=4]‘notcrashedyet’ - did you get a reply to any of your emails you sent your endocrinologist???[/size]

#6

‘Please leave me alone’?

#7

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).
#8

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.

#9

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?

#10

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.

#11

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

#12

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.

1 Like
#13

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.

#14

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?

#15

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.

#16

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.

#17

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.

#18

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.

#19

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.

#20

@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.

#21

ahahah you talk like you have been having pfs for 10 years, then i read you quitted 1 month and a half ago. You have nothing and cases like yours make doctors not believe us.

#22

Ok, this was expectable. Tamoxifen worked in the begging because it has the property of raising lh and fsh levels, therefore increasing testosterone. Problem is, it also increases estrogen, so once you stop tanking the estrogen levels are still high, while the testosterone no longer has the stimulation to stay high. The high estrogen makes the testosterone lower again, also reducing the activity of the thyreoid. You should check your thyreoid and your estradiol levels to see whats up