My story (accutane/dht)

Member Stories
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#1

This is an accutane story, and I apologize for putting this in the propecia forum, but I think the suffering is quite similar, from what I’ve read.

I took accutane for a month in December of 1994, and started experiencing erectile dysfunction and low libido in March of 1995. I didn’t make the connection then because I was ignorant. I was with a girlfriend of 2 years, and suddenly lost all libido, I can still remember the exact week even though it was 15 years ago. For two years, I passed off the problem as psychological, and continued with my life in a depressed and confused state. As my life continued slowly fall apart, I finally saw a general practitioner and had a blood panel done (DHT wasn’t an issue then for doctors, even urologists). Test levels at the time were considered within normal range.

In 1997, I went to see a urologist in Boston who specialized in erectile dysfunction. He couldn’t determine a cause, and theorized that problems were most likely psychological. On a seemingly unrelated note, he recommended I have a skin bridge removed from the glans penis, remaining from circumcision. I had the procedure done, not expecting it have any effect on my problems. Three days after the surgery, I had a spontaneous erection for the first time in two years. This lasted only about two weeks. After reading the post on procaine/demthylizing agents and DHT/5-AR, I now wonder if the localized lidocaine in the penis may have affected DHT levels to the point where erections were possible for a short period of time.

In 2000, I went to see Dr. Irwin Goldstein in Boston, who at time was already a noted urologist specializing in sexual health. After a battery of tests, he diagnosed me with perineal arterial blockage, and recommended bypass surgery. Long story short, I had the surgery, and while it accomplished to goals that were set out regarding blood flow, I still had no libido. In 2002, I returned to see Dr. Goldstein, and this time we decided to go the hormonal route with DHEA supplementation, without results. I then went to Whitaker Wellness Clinic (naturopathic doctors) in the Los Angeles area, where I was eventually prescribed HCG.

I injected HCG for a month, and it raised my total testosterone to 1500. Erections and libido were still nonexistant,so I stopped using the HCG. Although I didn’t think anything of it at the time, my skin was oily for the first time since 1995 (was this a good sign, that DHT levels had also been raised?) Immediately afterwards, I began taking herbal supplements from a website called actionlove (incidentally, one of the first places I noticed talking about DHT, 5-AR, propecia, accutane and erectile dysfunction/low libido in 2005). One month after taking the supplements, I suddenly had full erections and normal ejaculations for a few days, and then things regressed. I continued taking the supplements for quite a long time afterwards, with no effect. I now wonder if my body needed a month to process the hormonal changes that HCG caused, thus allowing me to have normal erection/ejaculation for a few days.

For the next few years, I concentrated on food nutrition to try to heal my body, not knowing the cause. Now I am 36, and have been trying to live a muted life as a hermit/monk while working in a nondescript job. Recent thoughts of suicide (not to be dramatic) drove me to do more research on DHT/5-AR connection and get blood tests done through privatemdlabs.com (after 15 years, I never had really addressed low DHT levels, although results over the years had shown extremely low levels). Here are the results:

total T 447 (280-800)
free T 19.67 (5-21)
LH 2.8 (1.7-8.6)
FSH 4.4 (1.5-12.4)
DHT 23 (30-85)

Total T has been around this number for about 15 years, don’t know what it was before taking accutane. Free T is high for some reason. DHT is very low, and has always been in the few times I’ve had it tested in 15 years. I should have had estradiol and SHGB tested, but to be honest, I was only concerned with DHT levels.

Needless to say, I was crushed when I saw the DHT results. I’m scared to death that my condition is permanent and that I’ll have to continue live out my life in this horrible state. I’ve made an appointment to see Dr. Goldstein again (he’s now in San Diego) to see if I can try HCG again.

Thanks for reading my story. Does anyone have experience with with low T/very low DHT being remedied through HCG use? I’m under the impression that very low DHT suggests that 5-AR conversion of testosterone to DHT is destroyed–but if anyone has any information, I’d appreciate it.

Roger

#2

Consider transdermal test - it should raise dht significantly over shots

#3

Sorry to hear you’ve suffered so long roger.

This is my fear, many many years of suffering.

Did you escape other other physical or mental sides?

#4

Luckfax:

Even though accutane and propecia have somewhat similar effects on 5-AR and DHT production, from my understanding, the side effects are not necessarily completely identical. Deep depression has always gone hand in hand with my erectile dysfunction/lack of libido. My body has wasted away over the past 15 years in terms of muscle tissue, but I was skinny to begin with, so it’s not that noticeable. I have extremely dry skin and no longer sweat–doesn’t sound that bad, but it’s not good. I can no longer feel emotion for the most part, but that’s most likely a symptom of depression/neurotransmitters. Physically, I’m assuming the consistently low DHT levels for 15 years are the primary cause of my symptoms.

In other words, I’m physically able to go to work and go through the motions of life, but not able to enjoy it. This happened when I was 21 and I’m now 36, so I had the same fears in the beginning years. I do remember what it was once like to feel like a normal human being (again, not to be dramatic) but it has been 15 years, and in a way, this is the only life I know.

I will give out this encouragement, however. Medical treatment of erectile dysfunction/lack of libido has progressed quite a bit since 1995–I’ve witnessed it. Back then, most general practitioners would tend to dismiss these concerns as psychological and encourage an individual to move on with their life. I know that’s a blanket statement. Medical information is also much more readily available through the internet now.

Roger

#5

if you got your T high through HCG why not give another try? maybe after 3-4 months ur body start making more DHT.
did you feel any shutdown from HCG? what was ur dosage and how many days/wk?

thanx

sps

#6

spstriken:

I’m going to try it again, as soon as I get another prescription. Actually, what you mentioned about your body needing a few months to start converting T to DHT again after HCG treatment, I’m hoping might be true. As I mentioned, in 2002, I tried the injections for only a month (don’t remember the dosage unfortunately), but I was injecting about 3 times a week.

Results after one month:

T raised to about 1500
Free T and DHT unknown (I was ignorant)
oily skin (looking back now, maybe a sign of hope that DHT was also being raised)

I stopped after one month because the T was at 1500 and I had no erections or libido–it didn’t occur to me back then that results might not be instantaneous. One month after stopping HCG completely, I woke up feeling refreshed and discovered I had libido and later, a full erection for the first time in 7 years. Unfortunately, this lasted only about 3 days. At the time, I attributed this temporary recovery to some herbal supplements I was taking, but that was probably incorrect thinking on my part.

Long story short, I’ll be trying HCG again as soon as possible and monitor T and DHT levels.

#7

did you get any blood test after HCG?

thanx

sps

#8

spstriken:

No, unfortunately. The total T of 1500 was right before I stopped, I don’t know how the accumulation of T affected DHT production afterwards.

#9

Roger,

Alot of us are having thyroid problems as well. Please review the thyroid thread so you can see what im talking about. High Reverse T3, could be a culprit.

#10

did u get any blood after HCG?

sps

#11

HCG will skyrocket your estrogen levels if you take too much…If your levels got up to 1500 on HCG alone, you probably took a good dose…This may of also increased your estrogen levels above the reference range which will make you feel like crap.

Dosing arimidex(1 mg per week) could help the situation if you give it time and not get impatient. Split the 1mg into (.25) quarters and use it every other day and see how you feel.

You need to do blood tests monthly though, this is very important.

#12

Anonn1:

I just injected HCG again for a month, 1000iu at 2 times/week. Estradiol skyrocketed up to 90.4 (7.6-42.6), and I felt horrible during the injections. Total T went from about 400 to about 800, DHT finally rose from 23 to 36 (30-85). LH and FSH levels of course dropped to near zero. Free T at 34 (5-21). No libido whatsoever.

I now am restarting the HCG protocol with arimidex, will test the blood levels again in a few weeks. I ended up cancelling my appointment with Dr. Goldstein in San Diego, and consulting with another doctor who first prescribed me HCG back in 2002. Goldstein apparently prefers clomid–sounds more attractive since it stimulates the pituitary. But I suppose the point is to use HCG and clomid as a test to see if increased DHT levels will have an effect on libido.

#13

Anonnn1:

I got Reverse T3 tested as soon as I stopped the HCG protocol. Reverse T3 is 290 (90-350). Free T3 and T4 are in the middle range. I tried out Natural Sources Raw Thyroid for a week, made me more energetic. I also obtained Armour and just tried out 15mg today, made me energetic and easily irritated. I’m going to have to assume for the moment that thyroid isn’t the cause of my problems.

#14

a while back I was looking at advertisement for Avodart where it was stated that it shrinks prostate for 4 years and DHT returns to normal state after 18 months (of cours eith lie or they were talking for normal people) I am sorry I don’t have the link now.So keeping in view this I think u will have to keep ur T at normal level for 18 months so that ur DHT can go to normal level. that is all my guess.
keeping airmidex while on HCG will be good not only for E2 but also it will keep ur LH and FSH in balance.
sps.

#15

I don’t know about that. Unlike a lot of guys here my DHT levels are pretty high, even to my surprise.

I don’t think Fin has done any lasting damage to my prostate, it probably shrunk it a little bit since it’s .8, but that’s within range, it was probably a 2 before I started, but I’ll never know really since my DHT is 62 ng/dL Range 25-75.

My T level was extremely low a month ago, 122.

Now it’s 313. I’ve been only on clomid, synthroid, vitamin D.

I was accutane for 3 months, I never experienced any long lasting damage like fin. Only thing I experienced was dry skin, but that went away after discontinuing it for 6 months.

#16

Hi Roger.

Please hang in there man. I know its tough but your symptoms are the same as ours and its very likely that the underlying problem is identical. We are going to find a solution to this. Have you been tested for heavy metals yet? A couple of guys (including myself) have tested positive for high copper levels (as well as other heavy metals like mercury and lead). It appears as if these heavy metals can cause a whole host of problems in the body, including impairing the function of the thyroid and adrenals. Please read Letsconvenience’s story for more details on this. It may also be worthwhile to record your body temperature 3 times per day, 3 hours apart for a number of days to ensure that your thyroid is indeed functioning correctly. A low body temperature is a strong indicator that there may be a problem with your thyroid. A low body temperature can severely affect the functioning of enzymes and hormones in the body and as a result cause a chain reaction that can cause many other problems as well. There is no risk in doing this and it is worth ruling out. Please check out JN’s recovery for more information on this.

1 Like
#17

Tried anything new Roger?

#18

Joe, I’m sure you are aware you’re attempting to co-mingle with a persona non grata. I know you are hoping to gather information which could be useful to you in this fight for life, but I think you are forgetting poor Martin’s plight. Any outlandish outbursts by poor Roger could inadvertently quash Martin, and then how would you feel? As far as I can tell, Roger logs in 2-3 times per week, but keeps to himself mostly. I wonder why? I know I reneged, but I promise – last broadcast. Joe you asked about nocturnal erections not long ago: I said they were fine, but I should have gone further and told you that the nocturnal ones are the only kind I can get.

#19

Accutane is not used because it is an anti-androgen.

Accutane is a different drug to Finasteride, it has many different effects and most people who use Accutane get side effects different from the people who use Finasteride.

MOST studies suggest Accutane DOES NOT inhibit 5alpha-Reductase (see my posts here viewtopic.php?f=27&t=5076&p=36987&hilit=+accutane#p36987).

Therefore for the benefit of the people for whom this website was set up it may be very misleading to try and connect the dots in a way that includes Accutane users. It may also be a waste of time for Accutane users to try and connect their problems to Finasteride users - it also wrong for anyone to claim this is true with no evidence. This may build false hope - This may set back their own recovery years since they are looking in the wrong place.

I personally dont have a problem with you posting here - but it would be better at “accutanehelp”.

#20

but he clearly has extremely low DHT… so maybe the mechanisms of finasteride are acting in our bodies in a way that’s different than simply examining the 5AR2 inhibiting features of the drug… since you nor anybody else knows the exact mechanisms taking place, you can’t say this is false…