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.
He said exactly that? Did he say he had seen other cases? I’m surprised that he’s so confident.
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.
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.
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.
sad to hear brother, poison it is!
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
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.
Its been a while since ive provided an update on my situation. Im not after sympathy but want to share. Unfortunatley there has only been further deteriation. Long standing symptoms have only worsened and new ones have developed ie.i get constsnt bone pain especially in the legs, knee caps, shoulder cuffs, cheek bones, eye orbits, cranial plates, ankles, fingers and thumbs. My soft tissue loss continues with the added bonus of severe stabbing pains in the muscles especially around the legs. I cant walk in my bare feet as theres nothing between the bone and surface of the skin. It feels like stepping onto broken glass. My strength has all but gone. I have bruises from months ago that have not cleared, my skin tears like paper. I cannot sit as i get pains in my buttocks. I am contemplating drinking warm water ‘my only choice of drink’ through a straw because of the sensitivity from global nerve exposure. The cognitive sides of constant extreme anxiety, anhedonia heve never lifted. I generally get 2 hours sleep but have had none these last 2 while lying wide awake despite invoking mindfulness/relaxation strategies. The left side of my face feels like ita been kicked and ive been seeing flashing lights out of the left eye. I have been diagnosed with tumours on my liver which are being further investigated this type is more prominent in women with estrogen problems ‘wtf’ myalsa has appeared on my face overnight. I recently presented my drs with 4 pages of symptoms. I have asked for transcranial magnetic stimulation and wellbutrin which are being looked into. The latter is not something im keen on but i need to try something to take the edge of this hell. Im still pushing for one of them to register my off label sides via the yellow card scheme. I continue to badger all of the medics relentlessly. Ive also asked to see the endo again. I enciurage everyone to do this or theyll just allow us to be forgotten. I was in a beautiful park yesterday with my son i watched people playing in the sun, enjoying the relaxation to social gethering and family time. I felt like an alien unable to feel any of it. My son wanted fun with his dad and all i could do was hide my pain as best as possible. Ive given up the ghost on trying to hold on to my old life eg socialy as it was too painful being on stage and play acting i now avoid and withdraw. I dont know where to go from here i just spend my time in damage control, survival mode. As i type my hand has become ice cold and my tinnitus has exploded for no reason. I hope to post improvements to my situation one day but unfortunately there are no signs of anything at this point in my long arduous journey. Without this forum and the support from one or two guys on here id be in an even worse position which is unimaginable really. God bless us all.
I’m very sorry to hear it. Do you receive antitumor treatment? These bad boys may produce a lot of hormones and contribute to your endocrine disbalance. Moreover, I suppose your blood tests should reveal a bunch of abnormalities, and you can address them to relieve your suffering.
Please do not give up. I really like your posts and your spirit. You’re a man.
@bigboss thanks man theyre investigating at this stage and ive requested bloods. Its funny ‘though not literally’ that every test etc has only been acted upon by me chasing them down. Very common for us unfortunately !!!
So it may be something. I’m sure you will feel much better when you receive tumor treatment.
Please keep us updated. Don’t hesitate to include test results, any thoughts, and theories about your condition. We are not doctors, but when the medicine is struggling like that, it may be useful to receive reasonable insights from others and also a fresh look. What I want to convey, do not stay alone in your head against all these problems, because you’re not alone. I don’t know if you have already heard all of that, but I speak from my heart.
In some of my darkest times , I’ve come on here desperate as hell and you have always been a source of light and of envoking the “not giving up spirit “.
On a summers day it’s hard as you say when everyone else is finding reasons to enjoy the day and just living , and it feels like you are some kind of living dead- in between the two and feel like a zombie.
But the way you support, encourage and push others forward on this forum is a credit no syndrome or illness can take away from you.
There’s this quote I’ve always loved from Harry Potter of all things, but it helped me a lot when I suffered with OCD intrusions as a teenager - “it’s our choices that make us who we are”
From seeing your positivity on here , I’m sure without realizing it you are out there making choices everyday that are helping others, and making the lives of others better . Even though you are in a living hell now , these choices are Whats defining your identity and not PFS or any other illness.
Hang in there friend , any good moment you have , where you feel ok even for a minute will be a mile stone, keep living for others and for those moments and I’m sure over time there will be more and more of them .
Hey Lazarus. I have a question. I’m also a father and I’m finding it hard to continue going. How is your anhedonia? Are you able to cry?
im 28 with the same path or road i think im still working.now 2.4 years since quitting after 6 months of use .did experince sides since day 1.i have veins showing up in my left arm with pain in the left heart area .now sleep adrenal pain .i live in 3rd world country that even dont sell finasteride .i dont know whats going to happen as no one can help .my mother is tired as she is the only one that i can speek to .living in pain .i did not imagine that could happen to me but now the bad thing is already done .no one undrestands. as i see im not the only one .but i still have hope
I would try to water fast for about 14 days then trying more risky things.
i already have no appetite and too skinny 57kg 180cm .my symptoms are the same as @LazarusRy i think i was hit the same way .im planning to try trt
8 months earlier .just before crash all blood work came back normal but i feel like shit.i dont want to spread negativity but atleast i throw it off my chest