JG's story and recovery attempts

Quint and galapagos both underwent Tamoxifen treatment with Dr Crisler.

Here is teh protocol Quint was given:

propeciahelp.com/forum/viewtopic.php?t=1088

I recall reading somewhere that elevated estrogens can be a factor in BPH and prostatitis, so I wouldnt be surprised if it’s all interconnected.

with the agreement of my GP, I began yesterday a one month cycle of tamoxifen.

He did not know exactly how to proceed so we decided to begin with 20mg every day during a few days and then switch to 10 mg/day.

I hope it will work, I noticed today that the chest pain disappeared 50% like when i started DIM, which is already something, but not much for the moment.
Its the first day so I guess I have to give it time, but I hope the chest pain wont come back after 3-4 days like with DIM (which I still take)

Time to make a little update :

these last days i took :

10 mg/day during one week
30 mg/day during 20 days

Positive things

  • prostate pain decreased a lot !
  • I can feel my dick now like before
  • less pain when I piss, and I the sensation is normal again
  • libido is better, but not 100% (75% i would say)
  • no more unwanted muscular contractions
  • overall I fell good
  • my leg pain (which I associate to inflammation of the sciatic nerve due to prostate pain) is disminished

But

  • chest pain still there, even if maybe less
  • some other symptoms still present : slight tinnitus, my heart is beating very hard, difficulty breathing, brainfogtimes to times, and my left testicle is sore (i have a varicocele + a big kyst there)

Now, my doctor want me to go to 40 mg/day, to see what it makes.
In september, i will see one good uro and one good endo. I hope they will give me some relevant information.

These are the news. Overall I’m happy that the prostate pain disminished that much, but I will wait a few weeks to say it is definitely an improvement.
I’m disappointed that the chest pain is still that much present, even if less. I thought it would be the first thing to drop.

Hey JG thanks for the update.

Are you referring to genital numbness, rubbery feeling dick and scrotum? Full sensitivity has returned?

Do you mean that before treatment libido was 0% and is now 75%? How significant of an improvement? Feel horny all the time, get turned on easily looking at porn, think/fantasize about sex all the time again?

Are you referring to muscle twitching all over the body?

THanks

hi Mew :

  • yes i’m talking about the sensitivity. I remember last november, when I touched my dick, it was such a strange feeling, like it was something dead. I think other members on this board got this thing more severe than me though. With time it came a little back, and with the tamoxifen, I think I can say now that I’m close to 100% of sensitivity.

  • I would say that after fin, I was at 30 %, with time it got a little better until 50 % before tamox. With tamoxifen in a few weeks it sped up the process and now I’m 75-80%, I’m able to permorm almost like before, even if sometimes I occasionally lose my erection. Hopefully one day back to 100%.

  • yes, I’m refering to muscle twitching. During 7-8 months, I got them everyday, about 4-5/day. I remember once during 5 minutes, my muscle was twitching on its own, so strange. The last 15 days, it happend to me once, maybe. I guess the tamoxifen may have done something there.

UPDATE : 15 MONTHS OFF

Reminder : the only heavy treatment I took since quitting is tamoxifen, during approximatively 6 weeks last summer

I’m happy to say that I improved in lots of areas :

Brain fog only appear on very rare occasions.
Chest pain has almost disappeared.
Libido, dick sensitivity are better
My pain in the left leg is almost gone.
Breathing is better.
etc.

My prostatitis and testicle pain had cleared from last august until 1 week ago.
But as I was doing lots of bicycle, the pain came back (not like what it was, but still, it hurts) >>> I’m an idiot, I should have thought of that. It’s a little discouraging.

Anyway :
I’m getting better, but it remains still these palpitations problems, slight tinnitus, I would like my libido at 100%, and in addition, this come back of prostatitis-like.

Next months :

  • I hope I will keep on getting better naturally
  • If the prostatitis stays despite of the pain-killers, I will try to clear it up the same way I did last summer (with tamoxifen)
  • My TSH is still high (4.5) and T3, T4 are low. So I’m wondering if I will return to the doc that told me I was hypothyroid.
  • My TSH is still high (4.5) and T3, T4 are low. So I’m wondering if I will return to the doc that told me I was hypothyroid.
    [/quote]

If your TSH is 4.5 you need to be more close to 1. You are still hypothyroid and that can cause a boat load of problems. Im hypo and have my tsh at 0.599 right now and my free t4 and free t3 is in the 36% range which I would like to get them boat to 50%.

Yes, I think I will make something for that, one of these days…

I read your story and I saw that you’ve taken synthroid for a few years now.
I guess it must be hard to tell, as you’ve taken many medicines during the same time, but : do you feel it has helped you anyhow?

Hi there, little update…

I’m feeling very well these days. I feel normal again most of the time, it’s awesome !

I’m seeing a metabolism doctor, because I think I still have some adjustments to make in order to reach 100% recovery.

He made me some tests to do recently, and I’m glad to see estradiol is now 22 pg/mL (10-40). I think it’s logic as I have no chest pain anymore.

About the tests he gave me, here are those that are wrong :

Vitamin D : 10 ng/mL (30-80)
Delta 4 Androstenedione : 3,4 ng/mL (0,5-2,2)
DHEA : 18 ng/mL (1-10)
Iodine : 44 mcg/24h (100-300)

Low vitamin D is very common but I will take a supplementation to see if it changes anything.
Iodine is too low, which is no surprise as my thyroid levels are bad and low iodine can cause this.
For D4A and DHEA, I think it’s preferable to have them high than low.

Good luck to everyone !

True to an extent, I think, but yours, like mine, is like double the range. It’s worth keeping an eye on because it could mean trouble down the road as the adrenals are working very hard to crank it out.

Hello,

It’s been about 1 year since my last update.
I’m now 27 months off this crap and I think I can say I’m healed.

I feel generally 100%.
Sometimes my chest pain comes back, but not long.
Same thing for my pelvic pain.
But I’m talking about very soft pain, nothing like when I was between Month 0 to Month 12.
I have slight gyno but it does not go away… it is here to remind me what I went through.
I may be a little less horny than before, but it’s harsh to assess…

Anyway. As I said in previous posts, I never was pessimistic, I always believed it would happen.
I’m happy now, and I enjoy life 10x more than before.

Everybody can read in my previous posts what I did to reach this. But each of us is different so I highly doubt this method would work for all of us.

I must add that I became very cautious about what I eat now. I try to eat naturally : lots of vegetables, fruits… fish somtimes (proteins).
I also take multivitamins (for iodine and vitamin D deficiency)

When I think of what I went through, it’s like thinking of a nightmare. When sometimes the pain comes back, I’m very very anxious.

I’ve thought so many times of how naive I was before all this
How is it possible that all these doctors just don’t believe us ? Who exactly are they ? Robots ? Laboratory representatives ?
What about the giant amount of jerks on hairlossboard that treat us like shit, just because they try to reinsure themselves that propecia is safe…

In conclusion :

I took finasteride from Jan07 to Nov07.
I quit because of the side, which came stronger as I went off.
the sides remain awful until Aug08
then gradually disappeared until Summer09, I would say

The only “true” medication I took was tamoxifen, for about 2 or 3 weeks only.
I always remained confident in my recovery, even if the worse moments. I juste did not want to believe I would forever be in such a bad condition.

This is great news man,I too feel very positive about recovery for all of us.I came to the conclusion that positive thinking and time are the best cure.Eventually we all will be cured,and of course diet and excersise will speed things up.I stopped reading all these negative posters on here and am getting better fast because of it.Great post man. :smiley:

do you think the tamoxifen played a role in your recovery, or do you think time was really what did it for you? I’m 18 months off and still really suffering badly and would be thrilled if I could be even 50% better in 9 months

Yes my problems began to get better while I was taking tamoxifen.

I stopped (because of headaches) but I kept on going better though.

Good luck mate :slight_smile:

This is NOT recovery!!!

DO NOT sell yourselves short guys.

This is NOT recovery!!!

Is it humour ?

JG

you were not very effected very much. I think your blood and every thing was normal already even if you had not used Tamoxifen you would have recovered.
Yes with the passage of time you will keep improving.

sps

I’m certainly not the one who had the most severe symptoms, sure.

However, stating I was not affected “very much” seems like somewhat rude.

I lived a nightmare during 1 year, you can read my symptoms in my story.
I did have crazy chest pain (and still have sometimes), erectile dysfunction, low libido, awful pelvic pain with sciatic associated, bad brainfog, tinnitus, vision affected, hard breathing problems. I suffered a lot and the pain was present 24h/24, 7 days/7.

Maybe you are mistaken with the fact that I always tried to be optimistic in my posts.

Well anyway, it’s not a competition to determine who is the #1 most post finasteride sufferer.

my condition did not improve until tamoxifen use, in august 2008, which I think triggered my remission, even after quitting it.
But it’s your right not to believe tamoxifen helped me, as well as people don’t believe you when you try to convince them finasteride or SP caused your problems.

If the recovery section only applied to a 100% return to pre-fin conditions it would be small indeed. A 70%, 80%, 90% recovery is still a recovery. And I can say that early on in my struggle with a life maimed by fin I found definite solace in reading about even partial recoveries. I think anyone that had truly bad sides would’ve been happy with a partial recovery during their worst times.

Immediately hoping and EXPECTING a 100% recovery when you’re completely fucked up from fin is somewhat unlikely, and brings much unneeded pressure. You cling to every up and down like it’s your last hope, and that is not conducive to a mental or emotional recovery (or coping method). I think everyone should look longer term, though I know it’s hard when you’re just realizing the effects of the drug. People usually don’t change much week to week, a month or two. But virtually everyone improves over the span of 1-3 years.

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