Letrozole clinical trial - Part 1 of 3 - The beginning

Member Stories
#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.

#21

Your the 2nd person who has reported significant improvements from using Letrozole.

Perhaps Letrozole could be one of the few treatments for PFS ?

I have used the drug my self with limited success.

But the longest I took it for in one go was about 3 weeks. I found the drug has heavy side effects such depression and mild brain fog etc.

I might try taking the drug again for longer at half the standard 2.5mg dose. Like you I also suffer from chronic fatigue.

You mentioned Frequent urination as one of the side effects you suffered from can I ask if Letrozole has helped with this ?

Frequent urination is my worst side effect. If I thought Letrozole could cure this I would take it for a lot longer.

#22

great story and priceless information dmal. think youre right that a lot of guys have thryoid or some sort of problem that keeps us from recovering. only we dismiss the possibility because of the normal numbers people get back from labs. mark2012 have you tried taking thyroid hormones for a while like dmal, before you go on letrozole.

dmal when did your endo recognize that you had thyroid problems, the antibodies?

#23

No any thyroid tests I had came back “normal”.

#24

My first Endo, who specialised in Chronic Fatigue, was the first to test my thyroid antibodies, which was in August 2011. A year and a half post Crash! Refer to my blood chart. As you can see from my bloods, my thyroid had been tested a couple of times, showing perfect function, however, suddenly my TSH was over range, which showed an issue. It was only then that my antibodies was tested on referal to my first endo. Point being, T4,T3 and TSH levels fluctuate constantly and their levels would not always show if their is a problem.

can’t emphasise enough, get thyroid antibodies and T and B cells (total and subsets) tested as part of your immune condition picture. I speculate that PFS is in part, an immune reaction to a hormone imbalance.

#25

Hi dmal - how are progressing using Letrozole

#26

Hi dmal,

How are your throat issues? I have the same thing. Any better?

Thank you,
Winston

#27

Currently, I am still taking 1.25mg of Letrozole every second day. I was meant to be on every third day by this stage, but I was starting to experience a bit of estrogen rebound, so, I held off tappering any further until I meet with my Endo at the end of this month. Numbers / Labs are all holding great and from a physological stand point - all good - Only negatives are, still have no libido at all, and prostate is seriously inflammed, seeing a Urologist at the moment