What sort of things should I be talking to my endocrinologist about?

Therapeutic Efforts
#1

I have been suffering PFS for 2 years and have been seeing an endocrinologist for about a year. She is very kind and appreciates PFS as a real entity, but it seems she doesn’t know what to do. She has given me a couple of tests which you will see below. What you will notice is that everything is in range as of my last test (Test 2). My prolactin was out of range but has returned to being in range. Does anything stand out to you guys? I have another prolactin test next week and then will be seeing her 2 weeks after that.

I should mention that my sides are mostly sexual, with some anxiety issues. My libido has been at 0% for the entire time and I no longer get spontaneous erections and struggle to maintain erections. Please let me know your thoughts.

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#2

Have your symptoms improved at all?

#3

Not really, I wouldn’t say. The only thing that has is that I get nocturnal erections again. But my erectile function is still poor and my libido remains at 0%

#4

I suppose the prolactin doesn’t mean much then, hard to say for sure. Considering your symptoms it could be the cause of your misery.

For some guys after they quit finasteride they just end up with weird hormonal profiles and symptoms, which resolves upon treating aforementioned hormonal issues. If you are extremely lucky, you could be one of those, which would mean you don’t have PFS. Maybe discuss lowering prolactin with your doctor.

#5

I guess it will come down to how my prolactin looks at my next test. My endocrinologist considered it ok at 17, but even though it is technically in range, that is still quite high for a healthy male.

Additionally though, isn’t it odd that my testosterone is so high in tandem with my prolactin being as high as it is?

#6

I have spent over £5,000 on seeing Endocrinologists to no avail. In the end I decided it had been an expensive waste of time and the only person benefiting were the doctors whom I was funding. I also spent time thinking about the questions I should ask and not ask but with PFS we still have many questions that remain unanswered. Perhaps it might be worth asking yourself what can an Endocrinologist do to make you better. What drugs can they prescribe to improve your symptoms. You might also consider the experiences of many here who have seen Endo’s. Low testosterone or low libido is a largely treatable medical condition which Endos have success in improving a patients symptoms, the same can’t be said about PFS. Consider the financial investment you are making in this doctor and whether it justifies the outcome.

#7

Fortunately the country I live in I don’t have to pay to see the endocrinologist. The medication will have some cost to it, if that is what is pursued. I am aware that PFS sufferers haven’t had much luck with endos, but I do clearly have some hormonal targets that might be worth exploring. I do recognize though that the fact that my testosterone is high, doesn’t bode well for me about addressing my libido because with a testosterone like that, libido shouldn’t be an issue. With that said, having prolactin at 17 is pretty high and could be affecting my libido.

I appreciate your advice though. It just sucks because by all accounts, libido seems to be the hardest symptom for much of anyone to recover from.