Letrozole clinical trial - Part 1 of 3 - The beginning

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.

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?

No any thyroid tests I had came back ā€œnormalā€.

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.

canā€™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.

Hi dmal - how are progressing using Letrozole

Hi dmal,

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

Thank you,
Winston

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

Hi Winston, the minute I went onto Thyroid meds (September 2011), the Thyroid swelling stopped. Get a full Thyroid test done, and get it done a couple of times.

Test
Free & Total T4
Free & Total T3
TSH
TPO - Antibodies

Hi Dmal,
I have similar issues. High TSH & high prolactin. Could you look at my thread and see if you can make any sense out of it?

Iā€™m following this closely. My prostate is also very inflamed, Iā€™m looking forward to see some solution for it.

Hi dmal,

How are you doing now ? any updates .

I have been using Letrozole .125mg per day for 5 months or so now. Its helped with E2 sides obviously but I am not experiencing any sort of sexual improvements from it.

Interestingly I am up to 5.5mg of NDT and my thyroid is now swelling/inflamed.

Sorry for not responding lads.

I have been really busy with work and family life.

Will post a more comprehensive update soon.

In the interim, here is a short version.

I tapered off Letrozole from February of this year and eventually stopped it in the beginning of June of this year (1 year since starting the clinical trial). Ever so slight wobble when coming off it, but this was to be expected.

Regarding improvements post Letrozole.

  1. Libido - rebounded post Letrozole, I would say that I am 30% better to where I was prior to taking Letrozole. Bear in mind that my Libido went completely while on the trial.

  2. Strength - Much improved body composition - Strength has improved to the extent that I am back doing Gym, doing weights and workouts, 3 mornings a week, without the onset of fatigue.

  3. Cognitive function - 40% improvement prior to clinical trial.

  4. Psychological (Mood) - 60% improvement prior to clinical trial.

I am conscience that I am only just over 5 months post trial, so things could still wane. However, that said, my last set of bloods done last Month, where perfect.

So, without getting ahead of myself. If this is the extent of my improvements from where I was in June 2014, and provided that things donā€™t deteriorate, than I am happy to except this.

Will update in more detail soon.

Do you mean 1.25mg (because .125mg is a very, very small dose). Yes, my libido completely went while on Letrozole. Had no problem performing when required, but just no interest. This is because, estrogen is needed for a healthy libido. Do not let anybody tell you otherwise.

Our situation is as a result of a hormone imbalance, triggering an immune response, which the body finds difficult to recover from.

Hi quitfin45, I am not a Doctor. However, if you have a high TSH, then this means that your Thyroid is in trouble. As already explained to another person here. You need to get your Thryoid functioning properly again in order to begin to recover from PFS. You will not stand a chance recovering without a properly functioning Thyroid.

Interesting what makes you think PFS is an immune Problem do think thats the root cause ?

Straight answer is; Speculation, however, that said, given my in dept pathology results over a five year period, and the clinical trial I took part in, it would appear that this is the most logical explanation, as once I addressed the hormone imbalance with the clinical trial, my immune system recovered and over 80% of the PFS sides I was suffering from dissappeared. Prior to the clincial trial, my immune system was been directly medicated, without recovery. So by going to the root problem (in my case, it was hormone imbalance triggered by Proscar) my immune system recovered as a consequence of the clinical trial. Although I am not 100% recovered, I am at a level now, where I enjoy life once again. I donā€™t endure it or loath it as I did with the full sides of PFS. Furthermore, I have not been on the clinical trial in over eight months, without regression. Once again, I must stress that this is what worked for me and I am not a Doctor.

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I would be very careful. Aromatise inhinbitors are just as dangerous and 5ar inhibitors. I had PFS for 3 years and i was making a slow recovery untill i used arimidex and aromasin. These drugs caused a full blown crash far worse then PFS and 6 months later no recovey from them.

i would avoid all drugs if you have pfs geneticsā€¦

Hi dmal,

Can you please check your email.

Hi dmal,

How are you doing now ?