What role does your doctor play in your treatment?

Therapeutic Efforts Doctors & Therapists
#1

Like most of us, I’ve spent over a decade in and out of dozens of doctors’ offices. While some have helped, I haven’t found a long-term, collaborative physician. After a while, there’s only so many times I can tell my story, run the same damn tests, and get no results. Most of my progress has been outside the doctor’s office (diet, exercise, my own research).

So: what’s your relationship with your doctor? I feel like I’m always taking the lead – asking questions, pushing for tests, prodding for results – but this usually drives most MD’s nuts!

I want to step my treatment up, but I’ve tried all the standard routines (TRT, Armidex, etc.).

Do most of you just keep someone on standby for checkups? How do you handle telling new docs about your Propecia experience?

I have a physician who’s a nice guy and agrees my system is out of whack. But beyond sympathy and a load of test results, I can’t say we’re making progress.

Time to test-drive another doc or just wait and see?

#2

some people have had luck with anti aging doctors.

#3

IMO have a local GP just for overall health. ie, you need a script for an ear infection, etc. But, they are all useless as far as PFS “treatment”. You can drive yourself crazy going to GP after GP trying to explain PFS, even with all the latest studies confirming our condition. Same goes for most endos and urologists. I’d contact Dr. Jacobs. He does phone consults if you can’t make it to NY. If you follow his blogs you know he is doing more for us than anyone else.

ps- Sorry to hear you’ve been dealing with this for a decade. It’s only been a year for me and it seems like forever.

#4

TXOptimist,

This is really good topic and something the new guys will likely dismiss. It’s very difficult to merely find a doctor that believes that propecia could have caused these sides. It’s even harder to find one that will work with you and collaborate on theories. My advice is don’t pick one arbitrarily. There are a lot of bad doctors out there. At least try to find one who is recommended by someone.

I think I went to 6 or 7 doctors, before I even found one that would work with me. He’s an endo. I pretty much do all my own research and then I go in and discuss the theory with him. He will research what ever my theory is and if he agrees it has merit, he will agree to try differnt hormones or treatment options to deal with it.

This condition is so complicated I think it’s unlikely anyone is going to care about it or spend as much time as we do trying to get to the bottom of it. M81 uses an alternative doctor. His doctor is more hands on and does extensive research for him. So maybe an alternative doctors another good option. GP’s are joke for dealing with this conidtion IMO though. Many give out fina like candy and are close minded.

The bottom line is you need someone that is willing to collaborate with you, open minded and willing to admit they don’t know everything. I don’t think you need to spend a large amount of money to see one of the supposed PFS doctors either. While these doctors seem to be great people, recognizing the damage done by propecia. They haven’t proven to have any more success with treating us than other doctors.

#5

As much as I want to head to see some of the so-called Propecia specialists, until I start hearing about some innovative treatment approaches I guess I’ll stick with my current team. I say I want a new doctor – what I really want is results, and I’m afraid there’s no one out there that can turn this around. Tweak at the margins, yes. Deal with core issues? No.

As frustrated as I am with the doctors, I also understand they don’t know why this is happening either.

#6

TX,

I repectfully disagree that seeing a PFS doc has no merit right now. It is true there is no cure at the moment but some treatments have helped a rare few. The member Dury had a complete recovery after a round of clomid. Also, you would add another case for documentation which adds to the greater good of all. We’ve all sat in the examining room depressed and suffering trying to explain PFS while some arrogant doctor smerks at us and tells our issues arn’t Fin related. Being frustrated is certainly understandable. Whatever you decide, GL.

#7

True but Dr Crisler, Jacobs and Shippen have all reported decent success rates with TREATMENTS. So dont disadvantage yourself.

They aren’t allowed to publish things about specific case examples or anything, they’d lose their licence, but i do think there is some success out there.

#8

In staying true to my screen name, I’m not closing any doors. I actually feel pretty good right now. Only thing is I’ve tried most of the treatments mentioned around here, and they haven’t done much. I’m more than willing to consider these doctors, but I’d be more likely to fork over their $500 out of pocket consultation fees if I heard new treatment approaches.

#9

TXoptimist - you don’t necessarily need to find a doctor that recognizes PFS. To improve your chances of good treatment, look for one that is know for giving proper hormonal testing, knows how to treat thyroid properly (e.g. armour thyroid), does 4x saliva cortisol testing, recognizes fibro and so on…

This type of doctor is probably far more likely to believe your story, whether or not you tell them about those evil pills we took or not. At least then you can get proper testing and just that gives you help if you ned to self treat.

#10

Colin, point taken maybe they can’t promote their success. But where are these guys they claim to have helped? I find it hard to believe not even a few of them would find their way onto this mb and rave about how one of these doctors was able to help them. I have not a single story like this.

#11

I don’t think they’d lose their license over something like perscribing clomid or TRT for someone who is hypogonadal. That seems to be what they try and thats been my experience w/2 PFS docs. Jacobs talked about guys he sees falling into 3 catagories - guys w/non Fin issues, guys w/Fin and something else, and guys w/straight Fin issues. I think the guys in the 1st camp have probably been treated successfully (not realizing it wasnt Fin that was the issue). I don’t think there are many , if any, instances of guys in the last 2 camps being cured.

#12

This.

#13

I just fired my most recent doc. I suspected my T-levels were falling, and when I told his office this, he still refused to refill my Rx until I came to see him. I live more than 3 hours away, can’t get away for awhile, and he knew this. He had been blowing me off for awhile, so I was ready to cut him loose.

Luckily I got in to see another local practitioner. I was right: my T-levels dropped to 250, the lowest yet. We’re running a battery of tests, including a pituitary MRI, since those levels were off. IGF and other blood work was normal.

Why don’t doctors trust patients? I understand they must deal with a lot of crazies. Working with the public and insurance companies can’t be fun. But I can get a hold of my local Congressman easier than I can reach some physicians.

Hopefully we can get this turned around this month. I feel like I’m running on empty.

#14

TXOptimist,

Good luck with the tests, but I doubt you will find anything on the pituiary MRI. Many of us have had this test done including myself and the result came back negative. Essentially the are just looking for a tumor on the MRI. I don’t think the medical community even knows enough about other possible Pituitary problems other than a tumor.

This was an area I spent a lot of time looking into more than a year ago. However, if it does turn out that it’s some type of Pituitary dysfunctional problem, God help us!