Post Accutane- 9 Years on Low Dose Clomid / Cialis - no longer working

[HR_Watson]

Hello, first-time poster.
I'll try and be as direct and succinct as possible - I have a long and complicated history.

I'm 38 years old. I started Clomid almost 9 years ago at the age of 28. I've been taking .25 mg 3x a week for the past 4-5 years. My initial doses were higher.

I was diagnosed as having secondary hypogonadism caused by two courses of Accutane when I was 26 and 27.
At the time, most Drs didn't know what to make of this, but in recent years, Accutane has been shown to shut down the hypothalamus/pituitary axis and cause hypogonadism.

Upon starting Clomid therapy my symptoms improved, although I consistently needed Cialis to induce erections.

For years, I was able to maintain a normal life while on this routine. Things weren't perfect - my libido was never the same as it once was, and I was reliant upon Cialis. Going through my tests from those early days my E was fairly high, and I'm a bit surprised that I wasn't put on Anastrozole.

In the past year, however, things have been on the rapid decline, and in the past month, I'm back to where I was pre-clomid *EXCEPT* that all of my levels are coming back normal, if not great.

Also, the Cialis is no longer working, and when I do ejaculate, it's practically non-existent.

My Dr is at a loss - and frankly, I'm scared and depressed. She wants me to stop the Clomid, and try Anastrozole only. I'm skeptical.

The other option presented was for me to slowly taper off Clomid, and then get a new base level reading.

Here are my most recent levels:
T Total: 771
T Free: 91.5
DHT - 37
Estradiol - 26
Prolactin - 4.5
FSH - 4.1
LH - 5.0
TSH - 1.8 (I'm hypothyroid and take 125mcg of Synthroid, daily).

Thoughts, comments, suggestions?

 

[ERO]

Anastrozole only makes no sense whatsoever - especially since your E2 level is fine as-is. What you need a doctor that is up to speed on the latest protocols. Prime Body and Defy Medical are both sponsors of this site and come highly recommended.

 

[CPTWilly]

I agree, anastrozole only is a prescription for disaster in the form of low E2, which is as bad or worse than high E2.

 

[Vince]

I agree with ERO, time to find a new doctor and protocol. Looks like this Clomid therapy isn't working for you.

 

[molonlabedoc]

Also, keep in mind, wow, what a great run you had and how lucky you were to have discovered the issue. Many have been ruined by accutane and have/had ZERO clue. Some did SSRIs and that almost always is a disaster.

You have come to the right place for some answers.

Good luck!

 

[DaveK22]

Fellow Accutane victim here. I was 43 though when first used it due to occasional adult cystic acne. Anyway, I'm 49 now & accepted that there is no cure for our condition (much like the PFS guys).

I'm currently doing Enclomiphene mono 12.5mg daily for my secondary hypo & Trimix for party time. I've tried EVERY protocol under the sun & nothing ever gave me my libido back. Overall I feel good now & have accepted my "new normal". Life is too short to dwell on the shitty hand dealt by Big Pharma but many others have a similar stories as ours, i.e. Propecia & SSRIs

Like many other 'Tane & PFS victims will tell you, higher T levels make no difference in how you feel. One theory is some type of androgen receptor "silencing"...among many other things

As far as Trimix, when I first read about it & I was like "no fcking way". Now I'm like, oh yea baby, God's gift to men lol

At least you found this forum...one of the best for men with hormonal issues.

 

[CoastWatcher]

Anastrozole only will send you into a tailspin and a world of misery. As was pointed out, you've no need for it. ERO's point is a good one - it's time for a new doctor. A full evaluation by someone who is confident, knowledgeable, and experienced. It may cost some money, not an inordinate amount, but both Defy and Prime Body are worth the initial fees associated with the start of treatment and those fees drop once your protocol is in place. Think if it as a necessary investment in good health.

It it may be an obvious question, but has a urologist ruled out any other, non-hormonal issues for the ED?

 

[mopes]

I was on accutane on and off for almost 15 years. I'm 35. I was also on various SSRI's for 10 years. Now I'm not on either and feel far better than I have in many, many years on T cyp. Never tried clomid but looking into it for many years before pulling the trigger on T. You've obviously given clomid a fair trial.

Time to find a new doc or convince your's to script some injectable testosterone. Fyi, I also tried compounded 20% cream, it was worthless for me as I wouldn't absorb it. Since you've also been on accutane I'd say there is a fair chance that your skin is ****ed too and wouldn't waste the time with a cream/gel.

 

[HR_Watson]

My apologies for the delay in getting back to everyone, I'm currently traveling.

This is tremendously helpful, the feedback and support is extremely comforting, I can't thank you guys enough!

Quick response to some of the issues brought up: I don't think straight up TRT is an option just yet as I'm experiencing secondary hypogonadism. I'm a bit hesitant to try creams and injections as I don't want to encourage primary hypogonadism. Also, my wife and I are hoping to conceive this year, so fertility is a major concern.

A few questions:

1) I'm relatively new to the site - is there a listing of approved Urologists/Endocrinologists? I had a top notch guy in New York City, but I've since moved to Los Angeles and the care I've been getting here feels sub par in comparison.

2) Any ideas on why the medications have suddenly stopped working? My body is clearly doing something with the clomid, as my numbers are okay and indicate a response.

The cialis issues started after I switched to a generic - I've tried two different generics, and the obvious answer would be to try the brand again, which I'm going to do, despite the cost.

Aside from desensitization, what other issues can cause this kind of non-response? My hypothyroidism is in check, and I'm not diabetic.

I'm getting all the other bonuses from having healthy t levels - my mood is stable, I can keep fat off and muscle on. I just have almost no sexual function.

3) I'm not the most litigious person, but for those of you suffering from accutane induced issues - has anyone ever taken legal action? I took it almost 10 years ago, so the statute of limitations might be up, but I'm curious.


Thanks in advance!

 

[ERO]

You need a TRT specialist to make this work well, even if you are sticking with Clomid for now and not starting T injections - and your average Endo/Uro is not up to the task. In fact we typically see some of the worst protocols on this site from your average Endo/Uro. I could consider Prime Body or Defy Medical as they are highly recommended by a great many guys on this forum.

 

[HR_Watson]

You need a TRT specialist to make this work well, even if you are sticking with Clomid for now and not starting T injections - and your average Endo/Uro is not up to the task. In fact we typically see some of the worst protocols on this site from your average Endo/Uro. I could consider Prime Body or Defy Medical as they are highly recommended by a great many guys on this forum.

I'm definitely looking for second opinions, unfortunately the Dr I had in NYC doesn't accept marketplace insurance plans any longer, and won't see me remotely.

I've looked into Defy and Prime - and I'm definitely open to it, but the first thing that comes up when I google them is "scam".

Is there more I can read up on them? Has anyone done long term (as in multiple years) treatment with them?

 

[Dr Justin Saya MD]

I'm definitely looking for second opinions, unfortunately the Dr I had in NYC doesn't accept marketplace insurance plans any longer, and won't see me remotely.

I've looked into Defy and Prime - and I'm definitely open to it, but the first thing that comes up when I google them is "scam".

Is there more I can read up on them? Has anyone done long term (as in multiple years) treatment with them?

Type in the search box here "Defy Medical" or "Dr Saya" and you will find HUNDREDS, if not thousands of posts dating back several years from countless patients. You can do the same over on the peaktestosterone site. I trust you will find the overwhelming consensus is that "scam" is the last word one would use to describe us. In fact, I clean up the messes from many other "scams" that are out there on a daily basis.

 

[trt4me]

Defy is not a scam at all and I agree with saya saying he cleans up others left over treatment.
They are reasonable in pricing and know their stuff. It's very hard to find local Drs that know how to handle a male completely.
Saya is one of the best in this realm and also collaborates with other top Drs.
You'll see very quickly if you start with them that this is their gig.

 

[CoastWatcher]

I am not a Defy patient, I have no vested interest in their success, but I admire their work. Scores of men here at EM have benefitted from their efforts. They are hardly a scam. Should you wish to consult someone in southern California, Dr.mRand McLain practices in the area. He, too, is widely admired and a friend of this Forum.

You our would not go wrong with either Dr. Saya and Defymor Dr. McLain.