An update on where I am

Had a telephone consultation with my endo today, normally F2Fbut lockdown protocols naturally dictate. As usual all of my bloods are fine. Unsuccessfully tried t gel since last appt in Feb. Despite a few hours reprieve I was blown apart afterwards so had to stop. The endo painted a bleak picture back in Feb but this time has said there is nothing to treat me, he won’t see me again, is unaware of any research with upcoming treatment and advised me to do what I can while I can as things will continue to deteriorate. I find a further deteriation unimaginable considering how far I’ve fallen in the last few years. Really sobering i can’t bear to think what will be left of me. Not a positive message I know but had to share. Not everyone is in this predicament so don’t see it as your own destiny.

Fuck mate that’s absolutely terrible, ive been following your story you must be tough as hell to be sticking it out despite all this. So sorry to hear this is what you’re dealing with. It’s deeply unfair good people have been left in your position from taking a bloody hair loss drug. Not sure what to say in terms of advice but feel free to PM if you need a chat or something.

Did the doc really say that in such clear terms? seems a bit strange to say given that doctors don’t really have a prognosis for an undefined/unrecognised condition.

*edit don’t give up on health care just yet find someone who is willing to work with you, seems like pretty lame advice from the doc to just leave you high and dry.

2 Likes

He said exactly that? Did he say he had seen other cases? I’m surprised that he’s so confident.

1 Like

I believe he’s researched it, said it’s s rare disease with no known treatment “as we know” and he’s also going on the person he’s seen for the last 6 months sitting in front of him presenting a deteriating picture as well as I expect having the knowledge of what very low androgens / hormones do in the long-term untreated. He told me in feb I was in serious trouble. I can’t refute his view as listen to my body and know it’s really bad. I had the start stop of fin for too many years. He’s a good guy and tried to help. He probably understands the endo system more than any of us. It’s a sad day. Regardless I’m going private as want to rule a few more things out in terms of potential treatments.

I’m surprised that he doesn’t want to even keep checking in on you.

Be careful if you do have to pay out of pocket to see someone, plenty of shysters out there.

2 Likes

I know I felt dispondent to say the least I did ask if he’d still see me for routine bloods but he stated that bloods are normal and it’s unlikely things will change. Going to try the Nuffield. With what’s on the forum I thankfully have a degree of understanding.

1 Like

I’m sorry to hear this. If you ever need someone to chat to, please feel free to reach out and I will offer what support I can.

3 Likes

sad to hear brother, poison it is!

1 Like

that doc is lying to you, dont belive on him stay positive and dont give up we all can go one more step foward

dont stay depressive and you can recuperate all ,just dont give up because a bad doc told you that

Remenber your not alone in the fight we are all figthing with you and you with us and we gonna win donst matter if we take 1 2 3 4 5 years we gonna win

3 Likes

@peter31WORD!

1 Like

To confidently say it’s going to get worse is as much magical prognostication as telling you you’ll be %100 in another 6 months. Don’t pay it too much heed @LazarusRy
Hopefully you’re aware enough about other people’s experiences to know where you actually stand without someone talking like you’re a ticking time bomb. Can’t imagine what someone fresh into PFS and with a high regard for the opinion of doctors would think after hearing this.

3 Likes