My experience

Member Stories
#1

Hi all,just registered but have been reading for a few weeks on this forum.There is some very useful information and i very much appreciate all the contribution…I think sharing are personal stories,theories and confronting them is a very important step on the trying to recover,if that were ever possible.

Here goes mine.
I’m 24 years of age and live in Italy and am a university student.
I always suffered of thinning hair even as early teenager,without real shedding.I have always mantained all hair even though i would continuosly worry about it.So at the age of 21 i decide to go to the dermatologist which after consultation initially prescribed me minoxidil 2% lotion and nizoral shampoo.So i went home and applied for a couple of months but wasn’t happy with the results,it was also giving me skin irritation.In the meantime i was doing all my homework for finding all possible treatments for my hair problems.I came across propecia on some Italian hairloss boards and read about it not paying to much attention to it’s possible side effects.So on a second appointment with the doctor i told him I wasn’t too happy with minoxidil.He explained that the only alternative with proven research was finasteride,but he also thought i was quite young for treatment and didn’t have a severe case for it’s purpose.I was willing to make him prescribe me this medicine for it was much easier to take and thought it would work better, hearing it’s good results.I was too eager to get something done.So he then decided to prescribe me it without talking to me about the possible complications.So i started taking it and after a few weeks my not initially bad hair situation was changing positively,sebum was completely stopped,shedding was completly absent and the hair was slowly growing thicker…I was finally happy with the results but unawair of it was actually doing to me…In the meantime I was working out and was having brilliant results with both resistance and overall strength.My libido too was very good and had no problems with my girlfreind.I felt great and was quite tight.Tings started changing,I was getting very nervous and anxious,i am normally,but couldn’t cope with it anymore.I did not know what was happening.I soon split up with my girlfreind and was feeling very depressed.I thought it was time to stop, I finally realised it was doing something bad to me.As i stopped things got a little better mentally but didn’t want to lose the results.I decided by myself to take saw palmetto as it worked in the same way but was natural so i thought it would ok and less harmful treatment.As i came off finasteride and went on Saw palmetto i started getting mild nipple tenderness, probably caused from the the drop of t levels and high estrogen levels after coming off propecia.Saw palmetto was probably making it worse but did not realise.I was still a bit low so my gp thought to help me out with elopram(SSRI) to get help me get through this difficult period.He also told to get immediately off antndrogens.So from saw palmetto I finally passed to topical solution revivogen,i was very happy with it and feeling a lot better also due to the AD.I continued this way for about a year or so and didn’t have particular libido or other problems.I was still fit and phsyically active, just gaining a few pounds because started eating a lot.After sometime i had a few accidents braking my leg and after about a year my poulse too.With this happening i haven’t managed to mantain good training.I have put on a lot of weight in the last 2 years and haven’t managed to get back to my peak.I just dont’ feel the same.I still have nipple tenderness and hasn’t gone away.I am off everything for quite some time,but haven’t managed to totally recover.I have got some blood work from from my gp but didn’t get the right tests for usefull information.
I will be posting my latest ones so maybe some1could me help me out and see what you think about it.I hope to see Hypo-is-here and hear his opinion,I know he is quite educated on this stuff…Thank you all for your time and disponibility

View my bloodtests here: propeciahelp.com/forum/viewt … fe46118d2d

#2

Nacle:

Hey, I know how you feel. Finasteride really fucked me up. Keep us updated on your progress.

Josh

#3

On the hypogonadal checklist I’d say I scored 22-23.My main symptoms are lower libido,brain fog,tiredness,anxious,mild nipple tenderness,difficulty on losing little extra weight even if I have very good muscle structure.Mood swings too.

#4

As I had mentioned on my hormone topic i was waiting to get a mri on my pituitary.
I got the scan done this morning with contrast and actually got the report immediately. The scan showed signs of Microadenoma on my pituitary;it’s nothing drastic and most probably not due to finasteride use but could likely explain as why i have reacted so bad to finasteride.The doctor immediately asked me where my prolactin levels where and from my previous results they where not that high strangely.
I’m not gonna say i’m happy about all of this , but atleast it sheds some light on what could actually be wrong with me. My next step is controlling adrenals to see if they are intact and new blood tests obviously.
I’m gonna be needing to see a real good endo this time!! :astonished: :astonished:

#5

If your prolactin levels were fine, then how does the microprolactinoma have any role in your issues? Did the endo explain this? What is the next course of action for treating it?

#6

That is good to hear. I’m guessing you will be taking cabegoline for that - hope it helps.

#7

From what i know the prolactinoma is the most common form of pituitary adenoma but it’s not necessarily this type.Adenoma can be secreting excessive ACTH(adrenocorticoid releasing hormone) or excessive thyroid hormone or even growth hormone.These are all hormone producing adenomas.Adenomas can also be non hormone producing.
As it comes i had igf-1 way out of range which i think is in someway simular to gh,please correct me if i’m wrong here.

Anyway as i said i’ll be needing new blood tests focused on these hormones.It is also to say that prolactin is a very variable hormone which depending on day or even hour can give totally different results.
It’s just a matter of visiting my doctor now and seeing what he’s to say.

#8

I just got back from the endo appointment.

Prior to mri scan on my pituitary i have been put on dostinex 1/4 mg twice weekly for 3 weeks and then 1/2 mg twice weekly further on.
The doctor has requested the folloing exams to be taken again:

LH
FSH
Testosterone
Free testosterone
Estradiol
Dht
Prolactin
Tsh
Ft3 and Ft4
GH
ACTH
IGF-1
Cortisol 24h urine
I can start Dostinex as soon as I draw my blood on friday.

However from the abdominal t.a.c scaning i did a couple of months ago it results i have Fatty liver.I asked him if it was possibly linked to finasteride,he excluded this theory. He didn’t think it was that important actually,he said it was because I wasnt’ eating well.( actually i am very carefull what i eat, i always eat clean and don’t drink or anything,strange),he said maybe i have it because i eat too little.
Has anyone else here experienced fatty liver from finasteride?Do you know if it could be linked?I mean i did have high estrogen for quite a while,and it is a possible cause.I’m a bit confused on wether to worry about this or not.
Well at least iìm finally getting some treatment though after 5 years of nightmares and going from doctor to doctor.I just have to hope I improve on dostinex in the meantime.

#9

Google around about cabergoline/dostinex. It should be good stuff, but if your prolactin levels are fine, I don’t know…
I heard that about 10% of people have a microadenoma and most go unnoticed.

#10

Well i have been on dostinex for 2 week(currently 0,25mg x2 a week) now and i can definately say i see improvements,i still have to up my dose to 0.5 mg x 2 times weekly in a few days time.Feeling all round better,more outgoing and less anxious.I have added liquidex too 0,25mg eod and i can definately say weight and bloat has come off immediately, i’m nearly back to my pre-fina physical form, havent felt like this in ages.Back to having great times with freinds and i seem to be able to joke and laugh like i always used too.

I’ll be continuing dostinex as prescribed for my adenoma but might withdraw liquidex if i see my estrogen levels are too low on my next bloodtests, also to distinguish which benefits i’m getting from each drug.

Blood tests from before starting therapy should be ready in a few days.

#11

http://www.propeciahelp.com/forum/viewtopic.php?p=6968#6968

these are the latest labs before taking dostinex

#12

Just FYI, Dostinex is very expensive at least here. A cheaper alternative would be getting Cabaser. It’s cabergoline too, but you have to split the tablet (they are 1mg each).

#13

Thanks for the information onni,true,dostinex is one of the most expensive drugs as it goes,it costs like 40 euro for 4mg.
Luckily here in Italy its a class A drug so it gets passed by the national health service.I mean i am taking it to treat an actual diagnosed medical condition,potentially riskful, so I think it’s quite fair I’m not obliged to pay for it.

#14

How long are you supposed to take Dostinex? Hopefully not too long… it apparently has been linked to possible heart valve problems in large doses when taken for a long time… not to rain on your parade, just something you should be aware of.

pituitary.org/forums/topic_repli … olactinoma

medpagetoday.com/Cardiology/ … me/tb/4801

chippewa.com/articles/2007/0 … th965o.txt

… Again, it seems your prolactin levels were just fine prior to jumping on Dostinex, so why did the Endo prescribe it unless the microprolactinoma was in fact causing you issues/high prolactin? Just curious… I would guess if your prolactin are fine, then maybe you don’t need to take Dostinex after all…

#15

You have made good points Mew, I was awair dostinex possibly linked to valve disease one in five cases. I was actually questioning why taking dostinex myself having normal prolactin levels. Apparently Cabergoline acts as a dopamine agonist on D2 pituitary receptors and somehow shrinks the actual tumour whether it being prolactin secerning or other type.
The adenoma is there and it needs to be treated to prevent further growth and damage,so I think that is the explanation.
Anyhow I have an appointment tommorow morning with this endo and will be questioning all these points and ucertaining if I need Dostinex treatment.

#16

Well… there are other Dopamine agonists out there that don’t have the risks associated with Dostinex (ie, Bromocriptine)… maybe suggest using that instead?

#17

I was visited by the endo this morning,we went through the latest labs and all hormones said look ok except GH(and previsously IGF-1,which was forgotten to be took by the nurse this time). So this may well be a GH secreting pituitary adenoma,i need to recheck both IGF-1 and GH with a 45 min fisiologic solution infusion to minimize stress and get a clear result in a months time; in the meantime i need to be off dostinex and any other medication for 4 weeks and once blood is collected continue dostinex probably.

I did ask about dostinex and bromocriptine,he explained bromocriptine has become second line choice over cabergoline and has overall better pharmacokinetics.
Dostinex is a dopamine agonist in pituitary receptors and does not interfere exclusively with prolactin but all pituitary hormones and shrinks the actual adenoma.
As far as sideffects i shouldn’t have any on my current dosage of 1mg per week.Heart valve disease was linked to much higher dosage.

Anyway i’m off it for the next month and honestly i can’t wait to get back on it as i was finally starting to feel better.

#18

Yes, cabergoline is preferred over bromocriptine. I too feel better on cabergoline, more energy and better overall mood.

#19

hey what is liquidex? I also have immense bloat and water retention.