crashed last night

Member Stories
#1

My worst feared happened last night and it seems like i crashed last night.

I’ve been off propecia (after taking it for 7 months) for 3 weeks. I quit cold turkey and continued my usaal moderate drinking and smoking, lifestyle an fairly healthy/some junk food eating habits. I also have a busy/fairly stressful family life. After a approx 10 days i found this site. I read all the things i should be doing to avoid a crash and how i should have weaned off. I thought about going back on the drug to wean off but decided against it. I also started a detox for a few days but stopped that

After 10-14 days i had a few bad days, brain fog, insomnia, depression, numb genitals, shrunk penis and genitals, lack of libido, inability to properly masterbate and hold a hard erection.

The last 7 days have been good, i could feel the DHT coming back, my sexual side effects dissapered along with the brain fog and insomnia. I was really horny almost more than normal. The only problems was some slight aches and pains in my body. The last couple of days however i started getting a kind of pain at my lower/inside buttocks close to my genitals which slightly worried me.

Then last night after a busy and slightly stressful day, after i returned from the gym, i felt this rush of anxiety come upon me while watching tv. 20 mins later i could feel something ‘drain from me’ (probably the DHT) and my penis and testicles shrunk in side my body really fast. It was really frightening. I was left feeling different, panicky, detached from my genitals, no apparet interest in anything including thoughts of girls and difficulty urinating and needing to frequently urinate. I couldnt sleep after this, i didnt feel my body wanted to sleep. Its taken about 12 hours in my bed to get maybe 6 hours sleep. My shrunken genitals have imporved slightly and beginning to stretch and get slightly hard. I still have the detached and ‘dead to the world feeling’. I think i have the brain fog back.

I’ve eaten really healthy, got all the vits, (apart from yesterday) i was taking it easy and not doing loads, i havent been stressed, taking regular exercise, no masterbation, getting rest (apart from yesterday). I was convinced that i would be ok so this has shocked me.

I had blood tests done at my doctor a week ago and awaiting results. They won’t be everything on the listed on this site. I took the doctors advice to see what he could get back before trying to find a private/research lab that would do all the tests. I now need to go and see my family doctor agan to say what has happened. I want to go and see a urologist as well.

Can anyone sugest whether i should now go and get a full bloodwork done? I also read about the PFS doctors as being the only doctors worth speaking to. But they all are in North America. Can nayone suggest good doctors/specialists in the UK? Should i be asking about any treatment therapies at this stage like TRT.

I’m feeling depressed and shocked with this.

#2

Seems to be a doctor in Ireland now. I dont know if he is offering any treatments. Could call and ask.

viewtopic.php?t=4391

You may want to wait and see the doc before you get bloodtests. That way you wont have to take the same ones twice.

#3

Still feeling pretty good and not much change for me over the last 8 months since my full then half recovery with tamoxifen. Please see recovery thread with tamoxifen in DRUG THERAPY SECTiON.

viewtopic.php?f=5&t=5594

It would be real step forward if other people replicated the results i achieved with tamoxifen from a mechanistic and treatment perspective for the rest of us. Especially if they can stay 100% recovered which i believe i could have had i taking it easy a bit more. I would especially be interested too see how people perform with it after taking it early after crashing.

I am inclined to think that taking tamoxifen early after crashing could be crucial to achieving a recovery. It is strange how tamoxifen isn’t working for me now or weeks after i crashed during the recovery. It could be that a switch/recovery is only possible whilst our receptors are still receptive to being switched back on to their previous state/ sensitivity levels in tandem with the the person’s receptors being fairly unreceptive and desensitised if that makes sense. The fact that my receptors seem to be functioning ok now could be preventing me from making the full switch to my pre-crash days. That’s why i believe it doesn’t matter how bad your symptoms are after you crash as it could be the more desensitised you are to your own hormones, the better chance of making that switch. I’ve thought about taking propecia again to almost induce another crash. But were i to be lucky enough to make another switch, i wonder to which level of sensitivity i’d go back to, to my pre-crash days or the state i am in at the moment? I would probably bet on the latter therefore i’m not willing to risk what i have at the moment. I’m going to stop there because i’m rambling a bit and it’s all guessing still at this stage, but these are thoughts i have at the moment based on the information and experiences that are out there.

I do feel i was incredibly unlucky to find the board, seemed to be asking the right questions and then crashed. But when i look at what was going on in my life at the time, i am not surprised that i crashed. I feel less and less sorry for myself as days go on. I am grateful to an extent for my full then half recovery and very lucky in that respect. However, the way i felt during those 3 weeks of full recovery was incredible and that is target i have for myself. I am not going to be satisfied with anything less. In the meantime, i’ll do all i can to sort this mess out for myself and everyone else. I’m feeling fairly content with what i have and i can have a good quality life with what i’ve been left with. My symptoms that seem apparent to me now are:

physical
energy 50% less than normal - still feel a bit lethargic
genital shrinkage/ form 75% normal - 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 and muscle mass - 50% more fat 50% less muscle - i’ve put on weight around the midriff and buttocks and have loss a lot of muscle mass although to be fair i’ve done next to no exercise over the last year

mental
depression - 50% of me is still a bit depressed
brain power working at 50% capacity than normal
no brain fog

sexual
frequency of spontaneous erections 50% less than normal
strength of erections 40% as good as normal - its like the supply of something being cut off
libido 40% what it would normally be

In hindsight, i would have rather kept on taking propecia and then i could have weaned off in the future. For some reason the main sites i was coming across was the ‘my story’ website from one of the PFS victims plus the scam website where the guy claims to have gone to china to have recovered. The advice from these sources seemed to be just get of it. Now propeciahelp seems to be all over the web and more easily accessible in the space of 6-9 months. Also the medical professionals writing blogs and doing papers is a major breakthrough. Had i read Dr Rynne’s blog (which amazingly came a month after i started taking propecia) i would have never taken it. I know there was american doctors like crisler etc., but i viewed these guys a bit cynically and with suspicion, believing they had created an nice earner for themselves by tapping in to sufferer’s stories. I still do believe that to a point, although they have obviously done good for us as well.

There are still no UK professionals jumping aboard our ship, and since i believe the UK medical fields to be the best in the world, this is where i could have used someone writing about the problem to show it existed. Even my endocrinologist hasn’t bought in to it fully yet. That is the problem with the UK, it is so conservative and thank goodness that America’s medical fields are more open minded, to an extent obviously. Funnily enough, the city i moved to in the UK has a great reputation for the biomedical sciences. Opposite the gym i go to on the university campus, is a massive department specializing in molecular signalling so i’m going to stop in there one day. There are also a couple of other Profs ive researched who i believe will be more useful to us.

#4

Everyone wishes they’d weened off in hindsight, but what’s done is done. When I arrived the FAQs said it would make no difference, so I wasn’t too concerned, but reading a bit myself I saw a poll where 95% had just stopped so wanted to slowly ween - but I lost the pills when I visited my parents over Christmas! You couldn’t make it up. My lifestyle was poor for a number of unrelated reasons up to my crash, and dark midwinter isn’t the happiest of times anyway, and I don’t doubt that made things worse.

It is true that there is far more awareness now, in the UK the BBC story is one of the first things that comes up if you google ‘propecia’, not even ‘propecia side effects’. I wonder how many men are still out there oblivious to this since they started taking the drug before say 2006 when the problem was hidden. Finasteride might be easier to get now but I think fewer men will be taking it because it takes only a modicum of research to know the potential risks.

#5

notcrashedyet, you mentioned in another post

Is this the high blood pressure a problem that you are sure wasn’t present before crashing? I had mine checked about every 6 months prior to having a crash caused by accutane. My blood pressure reading was high for the first time during a physical performed 1-2 months after I crashed and it has remained high for the past 12 years. I had two GPs say that 140/90 is basically the upper limit before drugs are needed to control it. You could probably get away with controlling your blood pressure through lifestyle changes at this point, but it is recommended that medications be used if either number checks in any higher on a regular basis. Do your homework before you begin taking any BP medication, seems as if 2/3 of them cause sexual side effects. ACE inhibitors are reported to be relatively safe, but we all know what kind of shit-storm inhibiting enzymes can cause.

It’s good to hear you had a few weeks of complete normalcy from tamoxifen. Be careful though. I had rock-hard night time erections for the first 4 nights after beginning tamoxifen last fall, but the effects soon wore off and I swear it left me in worse shape sexually than I was already in before taking it.

Good luck with everything.

#6

I took tamox for roughly 4 months. Never had ANY effect - very strange. Got a bit better right after stopping it…

#7

I have just joined this forum today having experienced a crash roughly 2 weeks ago now. In between I felt that I was improving only for thing to get worse just a few days ago. I went to the doctor yesterday who has taken blood samples and has asked me to come back in 2 weeks, convinced that my symptoms are purely psychological. I fear that it will be almost impossible to convince him that what I am experiencing is down to propecia.

I was wondering how you approached this with your doctor and how you managed to get him to put you on tomoxifen? Was this only after you had hormone test results back? Does your doctor acknowledge that your problems are down to having taken this drug?

I am really panicking that I’ve screwed up my life and really need some guidance on what to do next.

#8

best thing is be easy

u have a very good possibilities to recover naturally in some months
avoid forum for a while, healty life, good sleep r best advices

only if things don’t fix u could join our struggle to recover

#9

Hi, i’m really sorry if you have experienced a crash, it’s horrible. So i can check you actually had a crash. Were you awake when something happened - for example, did you have this rush of anxiety and then did you penis and balls shrink rapidly accompanied by a prolonged draining feeling? Do you feel a completely different person now, emotionally, sexually, physically?

If you have had a crash, all is not lost though so try and keep your chin up as much as possible. I don’t think your G.P. will be able to help that much at the moment. You’ve told him whats happened, he probably won’t know that much about the drug and any information he gives you will probably be from the computer screen that all GPs are given regarding side effects for each drug. Anything he’s got to say on the matter you could just basically disregard. You could try taking him information that can be accessed from this site, especially on the home page. The traish et al paper in the journal of sexual medicine could be especially useful. There are 2 main things you should be thinking about at the moment.

Firstly, is the hormone profile. Ask your GP to be refereed to see an endocrinologist on the NHS. This will probably take you 3 months though, so if you have the money (or private medical insurance) you could go and see one privately and have one done then although you will probably need £1000 for the tests and 2 appointments. You could ask your GP for a full hormone profile as described on this site, although the chances are he wont give you this because he cant justify the costs. The endocrinologist on the NHS will probably give you the full hormone profile so you could wait until then. My opinion is that the hormone profile is not of great use in dealing with post crash issues. But it is a starting point and may be useful to compare what you have now and what you get in the future if you achieve a recovery. It may also help you mentally to know a step has been taken to investigate you. If i had the choice again, i would have waited until i saw the NHS endocrinologist as it would have saved me money.

Secondly and obviously the most important, is finding a treatment/ a cure for you that can reverse your symptoms. What i could gather from this site was the only chance of making a full recovery was to try tamoxifen or clomid early after crashing. I’m not sure if your G.P would give you these especially if you can’t convince him of PFS. Even the endo on the NHS didn’t offer me any help. You may need to go private and enter into some sort of debate with them. I’ll PM you who i went to see and who gave me tamoxifen. The administrators of this site have been a bit funny about me giving this info in threads in case they got sued from the endocrinologist in question.

Amazingly tamoxifen did work for me and all my symptoms went away including all the sexual ones fairly instantly. I thought i was permanently cured but it unfortunately only lasted 3 weeks. I believe however i contributed to my second crash and wasn’t looking after myself enough. You might be the one that can achieve a full long lasting recovery. I have now been left 50 % recovered for the last 8 months but i am fairly happy with this. Please see my drug therapy post if you want further information of this. It is worth saying that many people seem to have improved their symptoms with other treatments.

Other than that, some of the long term sufferers are doing a lot of good work trying to find a cure, publicity and a bit of legal justice. There is also hope there.

Good luck

#10

notcrashedyet:

when you mention shrinkage, did you get numbness and emerging veins? How bad was ED? Are we talking severe ED with erections requiring constant stimulation? Any fibroisis or ball shrinkage? Bad fatigue or insomnia?

I’m toying with the idea of taking a SERM since I have bottom of range T, LH and FSH so in theory should benefit more than most. However, we know that’s not how it works and some guys actually report a worsening on tamoxifen so I’m hesitant.

#11

luckfax -

total numbness, no feeling, total disconnection, no veins to my knowledge

ED - yes no erections at all, even with stimulation it was pathetic - mirtazapine helped a tiny bit - ball shrinkage yes badly, tight to body or hanging really loose - penis was fibrous

horrendous fatigue and not so much insomnia but crap sleeping patterns - i could lie in my bed all day

have you not read my posts, was it not enough for you after all?

#12

It would have been easier if you’d just filled in a template profile, things tended to get lost in your ramblings…

I’m pleased you took my advice about taking a pharmaceutical T booster early on.