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#1

I tried to post before, but I guess it didn’t go through.

I am a former 7 year on and off again finasteride user, and have a good deal of the side effects alot of you do on here, even after stopping at least a year ago. I have been lurking this forum for quite a long time 2-3 years. And since the sides have not subsided, I am going to try and do something about it. Emphasis on the try part. We have to try right?

Anyways here are my symptoms :

loss of libido
no morning erections
no nocturnal erections
brain fog
trouble getting to/staying sleep
anxiety attacks
loss of vascularity everywhere
increased sensitivity to any medications

I never tolerated finasteride well. I always had to go real small on the dosage, .25mg EOD or topically. It was this or all the above symptoms were amplified 10 fold if I took the recommended dosage. 1mg made me want to wish I was dead. While that should have been the sign to never touch the stuff again, I soldiered on 7 years trying to save my hair. I fiddled with doses, tried thyroid supplements, experimented with estrogen blockers to combat sides, etc. Probably what alot of you tried as well.

I want to try to recover as much as possible. But even with all the lurking, I am still somewhat at a loss as to who to go and see. Urologist, Endocrinologist, DO, MD??? I’ve been googling doctors in my area for 2 weeks and can’t really get a handle on where to begin. Seems like all the anti-aging clinics here in Tampa, FL are the only ones doing TRT/HRT, Hcg shots, etc. But they are asking so much money with no insurance coverage and seems like an average of $250-500/month in meds.

So, if anyone can give any insight like a good person to see in the Tampa Bay metro area I’d appreciate it so much. Also, is there anything I can bring them specifically (i.e. literature) if I do get an appointment, so they know exactly what I’m going through and possibly how to treat? I’m assuming when I go to the urologist, he will probably tell me how someone at 34 shouldn’t need any hormone replacement, I’m within lab ranges, etc.

I have not had labs done yet. I am taking tribulus/longjack, l-tyrosine for slight libido enhancement. Creatine (kre-alkylyn form) to try and boost DHT. I tried also adding 5mg of DHEA ED in the mix 2 days ago, but I’m getting the cold hands/feet thing again and will have to stop. FYI, it seems any anti-estrogen makes me feel terrible. I have tried Sustain-Alpha and that stuff made me very ill.

Thanks in advance. I’ve never asked for help like this before, but I’m afraid I am at a loss and nothing is helping via supplementation or nutrition-wise.

Brad

#2

Just got ahold of 2 urologists and they say I need to go through my PCP to get blood work done before I even can see them. Sorry if this sounds ignorant but I had no idea you needed to do that first. I’m assuming this is standard operating procedure.

#3

Yeah, they are assholes like this…

#4

Probably some protocol that is put in place by the insurance companies.

Brad, go directly to one of the PFS docs if you can. Dr. Jacobs or Dr. Mariano. I know it means travel. Pretty much all other docs are just a waste of time and will just cost you more cash and add to your stress IMO.

#5

I want to trust me bro. I don’t want to waste my time at all, but it is a lot of money. I am leaning towards Crisler, but do you have any reason to see anyone else that you can think of?

#6

Btw, in retrospect, I actually find myself wishing to lose hair now. How effed up is that? Lol

In case you all wondered this was my crash:

  1. On finasteride 7 years off and on
  2. Quit finasteride for good
  3. 2 months later I had the best libido of my life, face and body acne, lost body fat, confidence through the roof.
  4. Month 3 and after I completely crashed with no return to date.

I’m assuming I had reflex hyperandrogencity and my hpta got screwed up in addition to the other probable causes of our condition like down regulation of androgen receptors and/or permanent mutation. Sound about right?

#7

I think I’d go Dr. Jacobs or Dr. Mariano. Dr. Jacobs is top of his field and a bit of a maverick which is what we need. He blogs about PFS and is treating dozens of us. I’m a patient of Dr. J and I will say he’s a great guy, very compassionate, although hard to reach. He has a great pedigree -Duke, Columbia, Harvard. I think Marinao takes a more overall health approach to PFS and doesnt prescribe to the androgen deprevation theory. Some members are also seeing Mariano and those I’ve spoken to speak very highly of him.

Maybe some members who are patients of each will PM you their thoughts and you can then call their respective offices and decide.

#8

Well, none of them have cured any of us. A few members have said Mariano is helping them feel better. I have no reason not to believe them. Yes, Jacobs has a more scientific approach from what I gather. Depends on what type of treatments you want to pursue. Im not putting Dr. J down by a long shot. Im one of his patients. Hes a brilliant guy and I believe he actually cares about us.

#9

All great info and I really appreciate it. I guess I’m leaning Dr Jacobs then. Would you mind explaining what I might need to do before seeing him, if anything?

#10

Went to Dr Jacobs website and blog. It does appear he is a very smart man who is sympathetic to our condition. I am calling today to setup a consult. I know this is important to track for all our sakes, so I will document here as much as I can when I start treatment.

#11

Just call his office and talk to Anne and set up an appointment. Tell her you’re having sides from Propecia. He has an office about an hour north of the city and one in the city. You could ask if you can do bloodwork first but Im guessing he will give you the order for your bloodwork at your first appointment. They are extremely positive there but just keep your expectations reasonable. There really is no proven cure but everyone is different. Good luck and let us know how it goes.

#12

Just curious, what do you think the estimated costs are besides travel/transportation/lodging that I should be expecting? I know there is the $550 consult fee for sure. But I assume there are diagnostics, lab work, prescriptions, etc. as well. Thanks

#13

Update: Appointment with Dr. Jacobs next Wednesday, Nov 10th.

#14

I’ve been at this now for 7 months. So far I’ve probably spent 5K on labs, travel, appointments, etc. Its not cheap. Some here are in the 10’s of thousands.

First set of labs from Jacobs was $1600.

I dont think any of us are getting out of this on the cheap. But, we have no choice.

gl with your appointment with Jacobs. Let us know how it goes.

#15

Has it helped at all? I hope it has, because that’s an awful lot of money.

BTW, as of yesterday I now have high blood pressure 148/96. I’m about 12% bf, don’t drink, don’t smoke, don’t salt my food, workout 5-6 days/week. I was 119/78 just about a year ago.

#16

As of the moment I’m typing this I’d say Im about 20% better. If I’m another 20% better in another 6 months I’ll be very happy. Not sure if I’ll ever completely recover but who knows.
Yes, its worth it and I think you’re doing yourself a great favor seeing Dr. Jacobs.

#17

Well, I’m glad to hear you have made some progress. Yes, 20% is better than 0% for sure.

#18

This isn’t very comprehensive I know, and I have a broader range from another test I did with the Urologist recently that I will post next week. But here are my test levels:

Serum: 446ng/dl Range: 280-800ng/dl
Free: 7.9pg/ml Range: 8.7-25.1pg/ml

Liver enzymes were all perfect. In fact, everything was kosher except cholesterol:

Total: 200mg/dl Range: 100-199mg/dl
HDL: 137mg/dl Range: 0-99mg/dl
LDL: 48mg/dl (which they like to be >59)
Triglycerides: 75mg/dl Range: 0-149mg/dl

#19

So you’re not metabolizing cholesterol properly. What can cause this?

#20

New test results. Unfortunately cash is a problem right now and would love to see a PFS doc, but until then I have to suffer even more with the doctors available to me.

Free T (Direct): 8.0pg/dL Range: 8.7-25.1pg/dL LOW
Serum T: 397ng/dL Range: 280-800ng/dL
Prolactin: 15.5ng/mL Range: 4.0-15.2ng/mL HIGH
LH: 4.0mIU/mL Range: 1.7-8.6mIU/mL
FSH 4.6mIU/mL Range: 1.5-12.4mIU/mL
TSH: 2.16uIU/mL Range: 0.45-4.5uIU/mL
T3: 108ng/dL Range: 71-180ng/dL
T4: 9.1ug/dL Range: 4.5-12.0ug/dL

My urologist says I have plenty of Testosterone and to start taking 50mg of DHEA every day and nothing else “to see if I start feeling better”. He also said “you MIGHT START seeing improvement in 6 months or so” and “I don’t want to put you on testosterone because it will suppress your LH and FSH”. He knows the Propecia story and agrees it is probably the cause of most symptoms. I asked him why my feet and hands were so cold and he replied “Your thyroid is fine, so it is probably stress and anxiety”.

I will not be going to him ever again. Good times…