9 months of hell.
Urination issues now. Leaking every time which is just fucking fantastic.
Awful bowel movements.
Penis still shrunken and rubber.
Cialis is mildly affective at best.
Had blood work done. Everything came back mid range except prolactin which was nearly 3 times higher than what they like to see.
Seeing an endo at end of month. Going to try to lower prolactin levels.
Urologist is baffled. Says they have never seen anything like this.
High prolactin can be common with a lot of suffers after finasteride.
Mine was also at an extremely high level.
Gradually after a few more months it came within the normal limit, but its stayed at the high end of the range.
The photo is my prolactin level 3 months after taking finasteride. Its clearly problematic that just 3 weeks of finasteride allowed my prolactin to be at that level even 12 weeks after cessation.
Surely its not beneficial to have predominately a female hormone circulating the male body for a sustained period of time.
By no means does prolactin explain the symptoms and cause of finasteride but i surely think its one of markers that will ultimately be shown to be connected to the issues, along with others.
I think it can explain some. Some Symptoms of high prolactin in men.
Seems like a lot of symptoms associated with this, but if it were only that easy.
Did your prolactin just lower in its own?
Iām curious to try cabergoline or at least cycle it to see if I can kick start my libido.
10 months. 10 months of torture.
Remaining symptoms are all sexual. Severe penile and testicular atrophy when flaccid.
Moments of clarity and then back to crash levels which is very confusing.
Libido still virtually nill though I can fake it at times to actually get it going. Fake it till you make it right?
Sleep is getting better. 6 hours a night most nights.
Iāve been using red light therapy at my gym and I think that has helped with my dry skin and brittle hair.
Seeing an endo on Thursday and another doctor Friday to discuss hormones and possible p-shot and gainswave but Iām skeptical of the p-shot and gainswave.
My Prolactin is also high, about 600. And my Progesterone is also double the ref range.
Both these issues will lead to sexual dysfunction and memory problems / brain fog.
This makes sense, my prolactin was high and my progesterone was 5 times the normal amount when I crashed and I was completely impotent with severe brain fog
At my endo appointment.
My urologist never told me my testosterone dropped from above 750 to under 420 while my prolactin skyrocketed.
Iām a little annoyed that they completely ignored it and tried to run every other test imaginable.
I will say the endo I am at is great. They are currently researching finasteride literature to work on some sort of plan to see what we can do.
They didnāt just write me off like everybody else to date.
Iām so glad to hear some of you came across good doctors.
Any chance you can connect your docs to professionals like the ones who are treating @Hanru_Sun?
Still dealing with sexual sides and the pellet like bowel movements.
Iām on low dose cabergoline to get high prolactin down. Endo said we are going to do minimal dose to not shock the system and this could take months to stabilize so be patient.
Most everything else has subsided.
Im trying to say this next part delicately as to not offend anyone.
My Endo believes that there is a very real connection between Fin and my issues. We had a very long discussion about everything.
With that said I turned her office to this site and she basically told me to stop coming here. Or if I do only look at certain areas (science posts)
Told me that there is a lot of fear mongering with little basis, which in a case where you have heightened anxiety would create more. Also she laughed at the thought of a lot of what is posted on this board. She made reference to a post about how someone took like 7 testosterone pills at once and expected to feel better.
She also explained how a lot of what is posted here is downright dangerous. Referencing some of the extreme diets and the horomone self regulating.
This is not the first time Iāve heard this place referenced in bad light either.
So Iām my opinion while this place exists for a reason, that reason may have gotten lost.
Add - not the foundation itself but the boards. There is some good stuff here but a lot of it is lost in the shuffle.
Did she say the high prolactin levels may be causing the genital numbness?
Most of us donāt condone the absurd protocols, regimes, or āpopping 7 pills at one timeā ideas. A lot of us are just desperate to get a solution to fix our problem, and it doesnāt help that a lot of doctors either donāt believe in our suffering or have no training/knowledge on it. We are left to ourselves, with only a few doctors here and there willing to try something out with usually a low success rate. I have heard high prolactin may be causing a lot of the sexual problems, some resembling that of hard flaccid syndrome, so I would be interested in reaching out to your Endo at some point for suggestions or guidance.
Yes. Higher levels of prolactin would play a role.
Told me not to expect immediate results. We are going to do Cabergoline .25 mg once a week for a month to two months check levels and see where they are. Increase dose from there or reduce dose depending on tests and how Iām feeling.
cabergoline from everything Iāve read is 4 months to stabilize hormone levels at .25 twice a week and Iām only doing one since my numbers are not crazy high.
Also, Even though my testosterone levels were not considered low by text book definition, my levels certainly were for my body and thatās the first thing she said to me. Blood tests 6 months apart show an almost 400 drop from 775 to 420. Thatās significant and for my body that was low.
Testosterone has gone up some to above 500 and Iām still not feeling entirely great but all I can do is give it time.
I think my next step is to go to be a gastro to get stomach levels checked but Iām going to work with my endo to see who she recommends or if she recs one while taking any meds.
I will say that Iāve had this strange thing going on the past few weeks where it feels like morning erection is trying to happen after I wake up and continue for an hour or two while Iām having my morning coffee and the connection is trying to happen but itās not quite there. Then slowly starts to fade. Not sure if good sign or bad sign.
Also I want to be clear. I am here for the same reason everybody else is, and I am not downplaying this at all, but I also know how the world works. They see posts and threads about some of this really out there stuff and that is what they run with, and not the very important stuff that seemingly gets buried.
Iām trying to be delicate to everyone here but for example I see the threads about food and they drive me nuts.
Yes eating a healthier diet will make you feel better. My doctors have been telling me that since i was a teenager, but itās almost gospel around here that you have to cut out so much food. I went insane healthy and was avoiding everything. I lost a crap ton of weight and realized I was only getting maybe 1200-1300 calories a day and trying to stay active, and noticed really no difference for months.
I went back to a normal diet where I eat healthy but I also eat pizza and burgers. Iāve since regained all my weight + and Iām eating pretty well normal and my condition has not improved nor worsened.
I didnāt check my testosterone levels before taking Fin, but after getting the symptoms, I had it tested with total testosterone level at 311 ng/dL. The PA didnāt see an issue with it as youāve said, it was OK by textbook definition.
Iām assuming I may have the same issue as you with high prolactin levels. Just scheduled an appointment with my doctor to get it checked, and if not, get a referral to an endocrinologist.
Funny enough, I didnāt know about prolactin effects until someone in my online chat brought it up after my bouts of anguish. They doubted that my problems were hard flaccid related and said prolactin levels may be the case. Do you think prolactin levels can balance itself out over time without drug intervention? I heard it can take a long time as its a gradual process.
How high was your prolactin?
Prolactin levels may eventually figure itself out. Just like anything else, But I honestly was not willing to wait any longer and wanted to try and do something about it.
My last round my prolactin was at 26, the blood work 6 months prior my level was 30.
So while it was decreasing, I got the sense that it was going to be a slow crawl to get that back to normal which is below 13.
I should say Iām not expecting any miracles here and Iād bet there will be more work to be done after I get prolactin to eventually stabilize.
My last bloodwork wasnāt in July and it was at 26. 6 months prior it was 30.
More that double the upper range of 13
Thanks, interesting that we have the same prolactin level at 26.
Also know a guy from Reddit who had PFS and he also have the same number.
Just wanted to say I really appreciate you keeping us updated. Also Cialis and other PDE5 inhibitors can cause GERD by relaxing the esophageal sphincter. Really hoping you make progress.
So the depression/ mental fatigue has tried to come back the last few days but Iām fighting through it the best I can.
Canāt say Iām feeling much different on Cabergoline to date. Still only 3 weeks at less than the min recommended dose so I have to give it more time.
