Letrozole clinical trial - Part 1 of 3 - The beginning

Member Stories
#1

Well, here we go, the full story - Part 1 of 3

Part 1. - The Beginning

In November 2007 I had a hair transplant done, and I was prescribed Finasteride under the brand name Proscar 5mg, to be taken in quarters (1.2mg) daily for male pattern hair loss. The transplant Doctor who preformed the transplant, and who prescribed Finasteride never ran any blood tests to see if its use was warranted. I was reluctant in taking it, not because I had read or researched anything about it, but my gut instinct was to give it a wide berth.

However, unfortunately my hair loss was still continuing, and in May 2008, in my naivety, vanity and pressure from the transplant Doctor who preformed my hair transplant, I commenced taking Proscar…

After a week of taking Proscar, I noticed that I was getting a dull ache in my Testicles, like if somebody was applying pressure to them. I stopped the course immediately and informed the transplant Doctor. He advised me that this was normal and that it would settle down and to continue the course, which I didn’t. A week after stopping taking Proscar, a suffered from sudden dizzy spells and my heart was skipping beats, this went on for about 24 hours, before, I went to a local swift care clinic here in Dublin, explained that I was suffering dizzy spells, they ran an ECG and immediately summoned an Ambulance to take me to a Hospital, with suspected Heart failure. Seemly my Heart beat was equivalent to that of a person suffering from a Heart attack according to the ECG.

I was asked if I had taken anything in the past 24hours, I explained that I had been out drinking on the Friday night, woke up with a really bad hangover on the Saturday and took two Ibuprofen, which I had never taken before (Usually took Paracetomal or Tylenol). It never dawned on me to mention the Proscar. A battery of tests was run in the hospital for four days, without clear diagnosis. The arrhythmia settled down and went away and I went back home and to work.

Unfortunately, the Testicle ache didn’t go away, and after about six months of putting up with it, I went to a GP. He sent me for an ultrasound, where the only remarkable thing was a cyst on my left epididyimis (sp). I was then referred to a Urologist, I explained that the pain started with taking the Proscar and that I only had taken it for a week, and stopped the course, but that the ache had remained. He had never heard of Finasteride causing Testicular pain, and suggested that I might need to take Paracetomal for a while to see if it helped.

During the period of post Proscar use, I noticed that my hair was now shedding a lot faster and that my hair was constantly dry, like straw. In addition, I developed a thin red vertical line on the bridge of my nose, which became prominent after a hot shower(weird, I know). Also, I was starting to put on a bit of weight, and was starting to drink a few beers mid week, which was out of character for me. At the time, although I noticed the issue with my hair, I was so busy in work and was getting married in the May of 2009, so I didn’t pay any attention to these tell tale signs (something wasn’t right). I had a follow up consult with the transplant Doctor who did the hair transplant in the November 2008, a year on from the transplant. He was disappointed with the growth, coverage etc, and urged me to go back on the Proscar, that the testicle pain, would settle down.

In the end, I recommenced taking the Proscar in April 2009 (a month before I got married), as the level of hair loss was deeply disturbing me, it was now coming out in clumps.

This was the worse decision of my life. I lasted a total of three months on it this time. I experienced severe night sweats for the first three weeks, would have to change the bed sheets in the middle of the night. I rang the transplant Doctor, and he assured me that this was all normal, that it would settle down and continuation of the use of Proscar. Ironically, the testicle pain started to wane after the third week, which lent weight to the Transplant Doctors advice. However, I started to get very sensitive nipples. After this, I noticed that I was a lot weaker then I use to be, weights that would pose a bit of a challenge, became impossible for me to lift. At this stage, I was now drinking quite heavily, as I was at party after party on account of the run up to my wedding. So although I was quite clearly having side effects, the level of alcohol I was now consuming was shrouding my better judgement. In addition, I would of considered myself a bit of a lad or just typical Irish, in the sense, of never taking about private things that are going on with one’s self.

Things went from bad to worse; I started to get muscle aches, which then progressed to twinges or spasms in my legs.These would last for a half a day at a time. I also became disconnected from my girlfriend, soon to be wife. I was no longer intimate with her, and my very strong libido started to diminish (wanting sex all the time to not particularly bother). However, I must add, that my ability to have an erection or maintain one was fine during this period.

My behaviour was becoming more erratic, and the night of my wedding, not only did I make a mess of my speech, because I was tripping up over my own words, but I had a massive argument with my wife over sex, I wanted to be back down at the party drinking as opposed to having sex with my wife. Luckily, I had been dating my wife for ten years prior to marriage, so she wasn’t looking for a divorce straight away! My attitude and behaviour had changed from the person I was. I started to suffer from occasional bouts of being “Blue”, which I never had before. But I put this down to stress at work (Bare in mind, this was the height of the global recession). I developed a flu like, fuzzy sensation in my head, which I later learned is referred to here as “Brain Fog”

At the end of the third month on Proscar, I woke up one Saturday morning, and noticed that my left Testicle had shrunk. It scared the shit out of me. I went into the bathroom where I had been keeping the Proscar, and threw them in the bin.

I never consulted the transplant Doctor when I stopped; I just stopped, cold turkey, as I had been assured that any adverse side effect would right itself on discontinuation.

My libido did return, however, my testicle size did not. My attitude and behaviour was still erratic and the bouts of “blue” were still haunting me. At this stage, my hair was back shedding again.

It was now October 2009 (three months having stopped) and I started to become bloated, wasn’t aware of it at the time, my wife would tell me, but I couldn’t see it myself. In addition, I would get these occasional, crippling momentary pains which would shoot up from inside my Anus, leaving me literally paralysed for a second or two.

In late March 2010, while away in Germany on business for four weeks, I came massively depressed and totally lost inside my own head. My wife came and joined me for the final couple of days of the business trip. On the day that she arrived. I had sex with my wife three times in two hours, and not satisfied enough, got her to “look after” me a further three times that afternoon. By that evening, I was so exhausted that I couldn’t budge out of the hotel room, and had to ring the company who I was dealing with to cancel a final dinner arrangement, because I was quite literally knackered.

The following morning I woke up at about five o’clock in the morning, and suddenly, everything felt different, my wife / partner of eleven years was a complete foreigner to me. I started to cry, and couldn’t stop.

I went to the bathroom to compose myself, and on running the shower, noticed that my Scrotum had completely tightened up, pushing my testicles inside me, It’s like they just stop hanging the way they always had. I was a complete wreck. It is only later to research on this site that I became aware of the term “crash”, which I just had.

I just about managed to hold it together until I got home. After about 24 hours at home, I couldn’t settle. It was like everything was different. I was living inside my head and totally lost. Everything I loved, aspired to and wanted, were as foreign to me as Mars.

My wife was totally shocked by my despair and crying, I was a complete shell of my former self. My wife, up to this point, had never see me cry. I think I must have been twelve when I had cried last.

She rang her Doctor and organised for me to go and see them. My wife came with me, explained everything, including the Proscar (which the Doctor dismissed straight away, as I hadn’t taken Proscar in over nine months). The Doctor diagnosed severe depression, and put me on Lexapro (anti depressants).

The anti depressants didn’t help; I took them for nearly a year, with no relief from the total loss of myself and depression. Not to mention the lack of libido or loss of strength. I was so close on numerous occasions to taking my own life. I became so dependent on my wife, that if she wasn’t around me, I would start to panic. Nobody, except my wife, was aware of what was going on with me. I became a total recluse, and at one stage, I wouldn’t take calls from my family or close friends. I somehow managed to work. I think the savage pressure that everybody was under in work due to the recession, meant that my behaviour went unnoticed or was excused. I had to change my role within the company from been an Operations manager to just office administrator.

During this period, I lost my Father suddenly. That day was the closest I came to taking my own life. But, as fate would have it, by some miracle, my wife fell pregnant.
I knew at this stage, that I needed to fight back, hard and all as it was, not because of the fact that I was becoming a father for the first time, but, because it upset me further to see my wife so upset over me (Irony).

I tapered off the Lexapro myself, and by April 2011, I was off it. I started to research the whole Proscar / Finasteride issue, and this is when I first became aware of this Website.

I will post the second part next week, which contains information on the initial diagnoses and treatment, as I need to condense it down, so as not to be as long as this epic I’ve just written.

And the third part the week after that.

#2

Your story sounds like what has happened to alot people.

I hope you are doing better now.

#3

Hair transplants and anything got to do with hair restoration is an all out disgrace. Everyone needs to give it a wide berth. But we have a fight on our hands and we need to get all in behind the rear h. I am confident they will find the mechanisms behind this. We will then cross the next bridge.

#4

Part 2. The Diagnosis

In the april 2011, as i was coming off the antidepressant, Lexapro, i started to suffer from bouts of fatique. Nothing to taxing at first. Determined to fight back against the gŕowing list of ailments, I started to exercise more strenuously, thinking in my limited knowledge that this would help. Along with the mild fatique, i had devoloped a feeling of tightening around the base of my throat, like somebody had an ever so slight hold of my neck. Furthmore, i was getting a high pressure felling in my inner Ear, like i was at high alltitude.As you can imagine, the more i tried to fight my depression and ill health, the further my health declined. A vicous circle.

To be truthful, I had stopped looking at this site for answers or education on PFS, as I found it exceptionally negative regarding some of the members postings on the forum, and given that I was suffering from severe depression at the time, found myself quite affected by the negativity. My wife was due to give birth by the middle of June of this year, and that now became my solitory focus.

Once again, I felt duped by Irish physicians, as not only had one prescibed and bulllied me into taking Finasteride, but furthermore, my GP who prescibed the antidepressant, never informed me of the horrendous effects of coming off such a drug after nearly a year. I literally yo-yoed every hour of every day.

I went to see Dr Rhynn, who was mentoned here,but i personally felt that my issue was not going to be solve with TRT. So i paid him for his time and left, as lost as I was before going to see him.

I went back to my GP and told him i wanted my thyroid and testosterone checked. The results yieldied nothing remarkable, except for a Testosterone level right at the bottom of the range, and typical of an discontected GP, pleaded for me to go back on the antidepressant. Needless to say, “fool me once!”.

It was now June, and the imment arrival of my first born. My life just kept getting worse, the fatique was now crippling. I could manage to be active for about 20 minutes at a time before I would have to rest for upto an hour. My limbs felt like lead weigths. My sleep pattern had become completely messed up. I would cat - nap at night and wake to a start at 4 in the morning. I couldn’t articulate simple emotions, my short term memory was disolved, could not remember what I been told only five minutes earlier. Worse still, I had to take unpaid leave from work. Fortunately, my boss whom I had worked for 6 years, didn’t let me go. Instead, I got a leave of absence without pay.

I went back to my GP, and verablly threatened him, that if i was not refered to an endocrinologist, I would drag him through every court in the land. I got my referal. At last, I thought that I was be taken seriously. The appointment was set for the following week with the Endocrinologist (i elected to go private). In ireland, you have automatic free healthcare - however you can be waiting weeks, months or even years to see a specialist, unless you go private. Where you pay top dollar for their time or procedures.

Unfortunately, I was naively unaware of how one doctor will very rarely contradict another. This meeting which i was living for, had be scuppered before it even happened. As my GP, gave his clinical diagnosis of my condition in his referal to the Endocrinologist. I spent the entire hour of that meeting in a private hospital, been told that this was in my head,that they never heard of PFS. I left the hospital demolished of any hope, which was the last thing that I was now clinging to dearly.

A week later my son was born, healthy and perfectly formed. I couldn’t hold him though, as the fatigue was so bad, that I had to sit beside my wife, while she gave birth. That evening I went home and very nearly tried to end my life. In desperation, i rang an old friend of mine, who now resides in Australia, but was a Doctor. I tried to compose myself as I explained everyt1hing that had happened to me since taking the Proscar. He told me to hold on, that he would give me a call back within the hour. After he hung up, the embarrassment of everything that I had listed to him or suffering from made me feel more embarrassed and ashamed.

I get a call from an Irish physian in a private hospital, he wants to see me first thing in the morning. My friend rang me back and spent the rest of the time reassuring me that i am going to be alright.

The following day i attended the appointment, an ECG, Cardio Pulmonary, Full pathology test was conducted. On receipt of the results a couple of weeks later, i get a call to come in to discuss the results. My TSH was high, it was screaming at my thyroid. Yet my thyroid level markers were good. He clinically diagnosed me with ME (chronic fatigue). Unfortunately this was going to be a diagnosis without cure, just on-going threatment. Because he suspected the Proscar triggered, he refered to an Endocrinologist, who, although had retired many years before, felt that the personal treatment I would get, would yield more answers than questions.

I went to see the Endo in the August 2011.This is the moment were the decline in my health stops. The Endo ran further tests through a private lab, where not only was my thyroid antibodies x 120 times over the reference range, but my T and B cells were all over the place, some clinically high and others clinically low. In essense, my body had turned in on its self and was attacking every cell and tissue in my body. At last, i had clinical evidence that i was imagining my ill health or depression. The Endo told me I was very lucky to be alive. And leaving that meeting with him that day, my drove me to my GP, were i went in to him unannounced and through the results of the Endo on the table in front of him. I told him that he and Endo had brought be close to ending my own life on numerous occasions because of their arogance. He apologise perfusly. I now had his undivided attention.

The endo I was now under, started treatment by suppressing my thyroid production, with Liothyronine (T3). I started on 20mcg per day, and by the christmas of 2011, I was on 100mcg a day. The idea been that I had an imbalance in Reverse T3 ratio, and the cells of my body were been starved of energy.Within a week of starting treatment, I felt better, by the christmas, my strength had come back, my testicle size was starting to come back and i was able to return to work. Just in time, because financially, i had run out of money, between newborn, medical bills and Mortgage.My testosterone readings were coming back at the very top of the range. However, my immune system was still messed up. Unfortunately, I was now starting to suffer from the side effects of too high a dose of T3, i was hemmeraging weigth, i lost nearly 4 stone and I couldn’t control my thought processes, as was like somebody who had drank 50 cupd of coffee.

In january 2012, on discussion with my endo, we reduced my dose down to 80mcg a day,where it remained till the may of 2013. Where i tapered down to 60mcg of T3. This controlled the weigth lost, however it was impossible for me toput on weight. The side effects of such a dose, were my bodyhair decreased, my chest hair turned white (like an old man) and i was starting to get artrictic pains. But there was no depression or fatigue, so i was happy to continue treatment.

I had continual bloods done over this period, by both my endo, and my GP. A pattern started to emerge, of high normal testosterone, estrogen, SHBG and Prolactin. However, my DHT levels and 3AdiolG levels were still low normal relative to my testosterone levels. So it appeared that my body was getting the energy it needed to function, however i was still not back to pre Proscar days.

Unfortunately my endo fell ill on account of his years (84), and could no longer treat me, so i got my GP torefer me to an endo, whom I had done a lot of research on. He is top of his field in diabetes, but also works on MTF and FTM. I knew this endo could help, because he has had expeirence with the therapies used for these transormatons. Remember, finasteride is used in some of these cases.

I got my referal in the november of 2013, once again, privately, on meeting with him, i presented the facts of everything i had gone through with Proscar and then T3 with the other endo. He was left, by his own words, utterly gobsmacked by not only my treatment upto this point, but my knowledge of endocrinology. He had heard of PFS, but new very little of it. He changed my thyroid medication immediately from Liothyronine to a mix of 20mcg T3 and 50mcgT4. The change was a little rough, but managable. On my follow up consult in January of this year, my new endo had researched, talked to and investigated PFS. He advised me that he was talking to Endocrinologists both in Europe as well as in America.

In the april of this year, i wasn’t feeling right, a little lost, so went to my GP, who runs any test i ask him to, got a thyroid panal done, which showed that my t4 levels were low. Of course, upto seeing this new endo, i was on T3 only medication which meant that i had very little t4 in my system, but the high amount of t3 compensated. Now i hadn’t suffient levels of t4 to compensate for the reduced t3 dosage. I rang the new endo, and he adjusted the t4 accordingly. The body hair which i had lost during t3 treatment was now coming back.

In the May of this, the Endo came back to me and agreeded to start a clinical trial with Letozole (Femara).

Couple of things that struck me about this period of my illness,

  1. was how long my Thyroid was iking out t4, even though it wasn’t producing it due to supression
  2. how long it took for any changes in dosages to take effect - with hormones, its not like a headache tablet, its not fasting acting in the case of hours, you can be talking months for a change to take effect with hormones.
    3), pathology testing doesn’t always show an immediate issue, take for example my TSH, it showed up in the middle of the range on three occasions, but then on the fourth, showed up over reference, indicating a issue.

I will post part 3 which will have full bloods attached as well christmas week. (As i have to get the latest results from testing on friday.

#5
  1. Where are you from (country)?

Ireland

  1. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

Google

  1. What is your current age, height, weight?

35 , 6ft, 13 stone

  1. Do you excercise regularly? If so, what type of excercise?

walking 4miles per day

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

Healthy varied diet

  1. Why did you take Finasteride (hair loss, BPH, other)?

Hair loss

  1. For how long did you take Finasteride (weeks/months/years)?

1 x week then for 3 months

  1. How old were you, and WHEN (date) did you start Finasteride?

29 (8/5/08)

  1. How old were you when you quit, and WHEN (date) did you quit?

30 (28/6/09)

  1. How did you quit (cold turkey or taper off)?

cold turkey

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Proscar

  1. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

1.25 mg daily

  1. How long into your use of Finasteride did you notice the onset of side effects?

1 week

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
[X ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ x] Complete Impotence
[X ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[X ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[X ] Difficulty Focusing / Concentrating
[ ] Confusion
[X ] Memory Loss / Forgetfullness
[X ] Stumbling over Words / Losing Train of Thought
[ x] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[ x] Extreme Anxiety / Panic Attacks
[X ] Severe Depression / Melancholy
[X ] Suicidal Thoughts

Physical
[ x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X ] Testicular Pain
[X ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[X ] Weight Gain
[X ] Gynecomastia (male breasts)
[X ] Muscle Wastage
[X ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ x] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[X ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

Read my post on Letrozole clinical trial

#6

Thank you so much for posting. I hope this has an ending that shows some promise. Lots of similarities. Some of the tests you had are not even available in Canada.

#7

Part 2 B -

I forgot to mention in part 2 that in June 2012, I was referred to a Urologist by the Endocrinologist who was treating me for the chronic fatigue, as he was concerned about the issues I was having with continually passing urine, coupled with the testicular pain etc. So, the Urologist over the following year till May 2013 ran the following tests. 1) Uroflow test - Nothing remarkable about my results here. 2) Cystoscopy - Once again, nothing of any particular note 3) Semial fluid analysis - Didn’t yield much by his own admission, however, he reckoned he got a decent enough sample - came back negative for pathogens 4) Trus (Prostate Ultrasound) - This showed that I had massive calcifications of the prostate and pinpointed the diagnosis of Chronic Prostatitis - Non bacterial.

Once again, was the prostatitis because the body had turned in on itself due to the Finasteride or was it coincidence?

Will be posting the Letrozole trial and all information / results in the next couple of days - Detailing my pathology onto a spreedsheet for you all.

Ciao for now.

#8

Dmal, sorry to hear about your story and about how PFS has claimed another victim.

It sucks you have ended up in this situation but after reading your story I have realized that we have another valuable member. I say this because you don’t take no for an answere and you are not afraid to challenge doctors.The more doctors who do not believe in this syndrome who are challanged the better. With that said I have a few questions about your story and wanted to bring up
A point.

First off if I am understanding your story it appears your primary care physician failed to diagnose your obvious throid issue. In the US it sounds like you would have a strong failure to digsnose case against that doctor. Not being able to digsnose PFS (a syndrome that doctots don’t learn about in med school) is not negligence. However you had an obvious thyroid problem that he straight out failed to test for and dignaose. This is a condition that any doctor in any country is aware of and is therefor negligent for not digsnosing and treating it. That’s bull shit that you had to pretty much “refer yourself” to the endo to get that thyroid issue digsnosed. Anyway with that said its good you have made tons of progress with treating tour thyroid issue.

My questions are as follows:

  1. when you finally ended up getting your thyroid issue digsnosed and treated you mentioned you felt better as far as energy levels go and I think you even mentioned that you noticed inprovements with mental issues. What about erection problems, labido issues and wattry semen? Did treating your thyroid issue give you inprovements with any of those things ?

  2. it sounds like taking a DHT inhibiter messed up your thyroid and caused All of your thyroid issues. Does your endo think you that you already had a thyroid issue and that the DHT inhibiter made it worse or does your endo think that the DHT inhibiter straight up caused it?

  3. my only other thought/question is that seeing that you have an obvious thyroid issue and that you responded positively to thyroid medication/treatment is there a possibility that your thyroid is to blame for all of your symptoms? Or do you have throid problems and PFS? I ask that question because it’s obvious that there is somthing else at play here with PFS involving the endocrine system that does not involve the throide. I say that because many of us including my self have normal thrioid readings but still have PFS. Obviously if you have got no improvement With any of your Ed/sexual symptoms while being threated for your thrioid issue than we know you also have PFS.

Lastly could you further explain what your points you where making about how you mentioned your endo that’s treating you for your thrioid mentioned somthing about your body or immune system is attacking your cells. You mentioned it breifly and I’d like to hear more about that. Autoimmune issues have been mentioned on this website in the past as being a possible PFS theory. Was your endo sayibg he thought you had a autoimmune disease of some kind ?

#9

My questions are as follows:

  1. when you finally ended up getting your thyroid issue digsnosed and treated you mentioned you felt better as far as energy levels go and I think you even mentioned that you noticed inprovements with mental issues. What about erection problems, labido issues and wattry semen? Did treating your thyroid issue give you inprovements with any of those things ?

Regarding treating the Thyroid issue, and more specifically, with pure T3 medication, initially, there was no change in sexual function, then after my third month of been on T3 at 100 mcg per day, my Libido went up, but this only lasted for about a month and then Libido dropped off again. This is as a result of an intitial spike in testosterone due to T3 use, however, T3 provides energy to all cells in the body, and over time, E2, Prolactin etc raised as well. Forgive the pun, but, “touch wood” I never had a problem with getting an erection or maintaining one, I just had no desire to get one, or more over, the spontenious / morning erections were gone. The semen issue varies, but this is due as I now know to the calcifications of my prostate. a

  1. it sounds like taking a DHT inhibiter messed up your thyroid and caused All of your thyroid issues. Does your endo think you that you already had a thyroid issue and that the DHT inhibiter made it worse or does your endo think that the DHT inhibiter straight up caused it?

Regarding weither I had Thyroid issues prior to taking Proscar, I’ll never know, however, I never had any health issues prior to taking Proscar, and was well built physic with tons of energy. As I stated in my earlier post, my Thyroid was tested four times post crash, and all four times my T3 and T4 levels were perfect, it was my Thyroid Antibodies which were high and my Reverse T3, all indicitive to Autoimmune condition. it was Proscar that messed up my Thyroid. Regarding what the endo who had me on T3 medication, he squarely placed the Thyroid issues at the use of Proscar (Finasteride), he told me that I had a adverse drug reaction to Proscar, and in having a reaction, my body started to attack itself. Interestingly, this endo stated to me that sex hormones are the most important strands of energy for the body outside of the function of the thyroid. He posed the question that why in the majority of cases, is it post menopausal women who develop Thyroid issues!!

  1. my only other thought/question is that seeing that you have an obvious thyroid issue and that you responded positively to thyroid medication/treatment is there a possibility that your thyroid is to blame for all of your symptoms? Or do you have throid problems and PFS? I ask that question because it’s obvious that there is somthing else at play here with PFS involving the endocrine system that does not involve the throide. I say that because many of us including my self have normal thrioid readings but still have PFS. Obviously if you have got no improvement With any of your Ed/sexual symptoms while being threated for your thrioid issue than we know you also have PFS.

No, it is definately PFS, Not to answer a question with a question, but my opinion and question is, do we all as PFS sufferers not suffer from some form of autoimmunity, weither it is Prostatitis or Thyroiditis or some other “ititis” which has either not been examed or looked at?!

Lastly could you further explain what your points you where making about how you mentioned your endo that’s treating you for your thrioid mentioned somthing about your body or immune system is attacking your cells. You mentioned it breifly and I’d like to hear more about that. Autoimmune issues have been mentioned on this website in the past as being a possible PFS theory. Was your endo sayibg he thought you had a autoimmune disease of some kind ?
[/quote]
Basically, your body has two main different types of immune settings, 1) is to TH1 Response or a response to an attack on the cells of our body from within (Viruses, etc). 2) is to TH2 or response to an attack on our bodies cells from outside invaders (colds etc). In our case, we have triggered a TH1 response due to an adverse drug reaction or in my opinion, due to an imbalance in sex hormones(has been noted and published by clinical research in the US, don’t have link, but there if you look it up. My last thread or Part 3 will explain why I am of that opinion. The question I have mulled over time and time again is… How is it that I had a fairly immediate reaction to Finasteride, and yet, some guys here, took it for months, years and even decades, before there was an issue, with the same familiar unresolved issues post crash or taking???

#10

Part 3 - A - Pathology

I might be putting the cart before the horse here, but, I decided to post my pathology first.

Unfortunately, my endo who has me on clinical trial will not release the results of my testing on a account of the trial, the tests run by him are denoted by a colum with a date and no results listed, however, I went to my GP, got him to run a host of bloods and here are the results. Check out the recent 3adiolG levels!!!

Will do a full post over the next couple of days, mad busy on account of Christmas and all of that!

Hope this is helping people.

Ciao for Now.
David Results.xls (72 KB)

#11

WOW!!! You never see anybody having extensive results in such clear manner when experimenting with protocols… such as this!! Massive thanks dmal, what an illuminating results!

#12

can someone give me insight or tell me what has happend? I can’t open this attachment . what happend to his adiol g3 values ?

Very Important to me because I am also Hypo but also by values not just by feeling .

By the way dmal you are good story teller . I mean that in a positive way . :mrgreen:

#13

His adiol numbers jumped back to normal sudendly after using Letrozole for some time, i think? His FSH and LH both also came back online somewhat immidiately after starting Letrozole.

But we have to make sure.

dmal,
Letrozole is something used to control estrogen, right? Did I understand this xml sheet right - that the moment you started using Letrozole, your FSH and LH came back online? Or did it come back online already with the T4/T3 treament but AFTER that blood test you started taking letrozole?

These are just plain normal lab tests take from a vial of your blood, right?

What does EOD and E3D mean in the sheet?

How do you feel right now? According to those results, you should feel pretty good right now in terms of symptoms.

Also, are you going to do a full panel in the nearby future as well? I’m thinking here that if the adiol g3 numbers stay consistently up from now on, then seeing your hormones etc alongside with it should prove the full picture on how Letrozole is working for you. According to all logic, right now your adiol-g, DHT and estrogen should be up and SHBG and prolactin should be down (than before). Your immune profile should be good as well when you recover. TSH, thyroid antibodies, bilirubin…

#14

That seems to be what the Excel sheet is saying. EOD= Every other day E3D= Every three days.

#15

[quote=“gefinauser”]
His adiol numbers jumped back to normal sudendly after using Letrozole for some time, i think? His FSH and LH both also came back online somewhat immidiately after starting Letrozole.

But we have to make sure.

dmal,
Letrozole is something used to control estrogen, right?Yes
Did I understand this xml sheet right - that the moment you started using Letrozole, your FSH and LH came back online? Or did it come back online already with the T4/T3 treament but AFTER that blood test you started taking letrozole?My LH and FSH came back up online after taking Thyroid meds, however, I still suffered from fatigue, libido issues, concentration / mental focus etc. On taking Letrozole, my fatigue went, my immune system has strengthened and my mental focus, function and concentration have all gone back to pre-finasteride days. Libido is the only thing that is shot still, but, I expect that to improve on tapering back / finishing Letrozole.

These are just plain normal lab tests take from a vial of your blood, right? Yes,the following is the standard list that I always get done…

LH
FSH
Testosterone
Estradiol
Prolactin
DHEA
Cortisol
SHBG
TSH
T4 - Total & Free
T3 - Total & Free
LFT’s (Liver Function Tests)
T & B Cells (Totals and Subsets) - Immune Function

On other occasions I get Progesterone, Cholesterol, PSA, ESR, FBC(Full blood count), WBC(White blood count) done

Regarding DHT and 3AdiolG or Androstanediol Glucuronide, I only get this done the odd time, as it costs €259 everytime(as it has to be tested in a private lab in Lyon,France)

What does EOD and E3D mean in the sheet? EOD = Every other Day or Every second Day and E3D = Every thrid Day

According to those results, you should feel pretty good right now in terms of symptoms. All symptoms gone, bar the urge to have sex (Libido) I have put this down to the AI, but all other sexual function is perfect ie: Erection strength, performance, semen, morning, nocturnal and spontenious erections

#16

Part 3 - Letrozole Clinical Trial

On June the 3rd of this year, I commenced an eight week trial of Letrozole (Aromatase Inhibitior).

Weeks 1 - 4 of the trial were a bit rough. My fatigue got worse, really bad, like the bad old days before taking Thyroid meds.
I got strange sides initially, but all managable - Like, Dry mouth, sore lips, fatigue(which already mentioned), total loss of Libido, very vivid dreams, bad headaches. However, during this time, I got my first nocturnal erection, raging one at that, it actually woke me out of my sleep. It had been almost five years since I had one! so I was prepared to continue the trial, even with the sides.

Weeks 5 - 8 of the trial were easier. The fatigue started to wear off, my mood became really positive, like I was falling in love with life again, hard to explain, but, somehow, everything felt better. Even stressful days were no problem. Morning and Nocturnal erections were now frequent, as in every day or every second day.

I started on 1.25mg of Letrozole for the first 2 weeks than upto 2.5mg after this for the remaining 6 weeks.

During this time, my Endo, ran blood tests every second week, although he wouldn’t give me a printout of the numbers, on meeting him at the end of the eight week trial, my body had responded so well to the treatment, that he decided to extend it another eight weeks, this time however, reducing the Letrozole back from 2.5mg every day to 1.25mg every day.

Weeks 8 - 16 - Life just continued to get better, my strength and energy came back, by the end of the 16 weeks, I was back reading complicated litrature again, something I hadn’t been able to do since taking Proscar. On meeting with my endo at the end of this extension of the trial, he was amazed by how well I was responding. He decided to continue me on the clincial trial for another eight weeks, this time, reducing my T3 Medication from 20mcg everyday to 10mcg everyday with a view to coming off it completely. Upto this point, It had been impossible for me to stop taking T3 meds, as the minute I did,I would start to feel really shitty very quickly. The only negative during this part of the trial, was that I started to get bone pain (Like a sharp electric shock in your bones and joints) it was painfull, I can assure you.

Weeks 17 - 25 - Once again, my Endo continued the trial, however, this time, I had to reduce the Letrozole down from 1.25mg everyday to 1.25mg every second day. In addition, I also had to reduce my T3 meds down from 10mcg everyday to 10mcg every second day, then after 4 weeks to every third day and then stop T3 Med altogether. Which I have done.

By tapering back on the Letrozole to every second day, has helped with the bone pain.

On my last meeting with my Endo on the 19th of December 2014, I have to continue on Letrozole 1.25mg every second day till the end of January, then retest bloods. Then taper Letrozole to 1.25mg every third day for eight weeks, and then retest bloods, and meet him at the beginging of April.

Short on Positives and Negatives to Letrozole for Me.

Positives…

Nocturnal, Morning and Spontenious Erections are back
Fatigue completely gone
Mental clarity, focus back
Love of Life and Wife back
Strength and Energy - Good
Sexual preformance - Good

Negatives…

Total loss of Libido (Desire to have sex)
Although bone pain has subsided, still get it occasioinally
Muscle strain (back, neck and shoulders) lasts for days at a time

I won’t be on this site much from here on in, so I really hope this helps people out there.

#17

Great news dmal!

I’m wondering if your blocking of the aromatase enzyme has led to you body forcing itself to reduce your T to DHT via the reductase enzyme, and it has brought you ‘back online’ to an extent.

I agree that a very slow and gradual taper is the way to go.

Keep us updated.

Also, could you PM me any info you have regarding getting 3adiolG tested? I’m in the UK and have been told point blank multiple times that the US is the only place to go and get that done.

Thanks, and here’s hoping its onwards and upwards for you in the new year!!

#18

It would appear that this is exactly what is happening. As already explained to me by my previous Endo who treated me with the Thyroid meds, it is got to do with cell receptors and hormones. My 3adiolg level is good now, I will have to keep it there for a period of time for the 3adiolg to replace the Estradiol which has been in the receptor of the cells. It was explained to me in the case of Locks and Keys. Both Testosterone, DHT and 3adiolG fit the same cell receptor as Estradiol, but it is the first three that actually activate the cell, where as Estradiol binds but does not activate the cell receptor, stopping the first three from binding with the cell receptor.

The only issue I see happening is where is the sweet spot? I could activate cells which may have remained dormant their whole life. However, given the hugh improvements I have been experiencing, I am willing to accept what may occur here.

Regarding where to get your 3adiolG levels tested, mine are tested through a private lab here in Ireland called “Biomnis Ireland”. My GP draws the blood (3 x Viles) and send it to them, they then send the Viles on to their testing partners in Lyon France. It takes a total of four weeks to get results from the point of drawing blood.

If you are in Wales, I sugggest maybe trying the following…

Genova Diagnostics Europe Headquarters

Parkgate House
356 West Barnes Lane
New Malden
Surrey
KT3 6NB

Telephone: +44 (0)20 8336 7750

Happy New Year

#19

Wow, that is pretty great news Dmal! I’m happy for you! So would you say everything is back to normal besides libido? No genital shrinkage? Sensitivity loss? It sounds like you can perform when called upon. So how long do you think you will be on the letro before you tapper all the way off?

#20

Regarding shrinkage, sensitivity, it was my left testicle which shrunk while on Finasteride. I suffer from a tight scrotum post crash, but this is as a result of the chronic prostatitis, triggered by the Finasteride. I am hoping that as my immunity strengthens due to Letrozole, that this will reduce the inflammation and in doing so, will cure the chronic prostatitis. With regard to the period of time that I will be on Letrozole? Not quite sure, however, i reckon it will be another six months of tappering before I am off it. All in told, it means that i would be on Letrozole for a year at that stage.