I quit cold turkey/trying to figure out what's happening

Member Stories
#41

Thanks for the reply. Yeah, I hear you on perspective. Honestly, I felt lucky the past four years or so that I had reached the point I was at. I wasn’t cured (at all) and figured I would be dealing with this for life, but I thought I’d come up with the right hacks to make it manageable and to get on with my life. Falling back into this in the last few weeks has driven home to me how good I had it the past four years.

So thyroid has been one of my thoughts from the beginning. So much of what I’ve experienced matches hypothyroid symptoms – even random things like my feet and hands falling asleep/getting pins and needles very easily. Of course, the bloodwork always comes back in range. I finally went a couple years ago to a specialist who believes thyroid issues are very underdiagnosed and that test ranges are garbage. He treats symptoms and treated me as hypothryoid. But the results weren’t great. We kept upping the dosage because I would take it and get a few indications that it might be working (like the pins and needles would die down dramatically) but then it would seem to stop working (pins and needles would come back). Never noticed a big jump in energy and it never worked long enough to judge whether it was doing anything for my weight/body fat.

We have upped the dose over and over again. I guess the theory is that your body keeps adjusting to new doses so you have to keep raising it to find the right level. We ended getting it up top 120mg a day. It’s a pretty big pill! I’ve been doing that for like a year but I feel like I’m taking a placebo.

This mimics my experience with Clomid, Testosterone, DHT supplementation, etc. They all work in theory, but I never feel a damn thing when I take them.

At this point, I’m going to go back to Dr. Jacobs in NY. I saw him originally when this all started years ago. My hope, and I’m sure it’s a longshot, is to get my metabolism back to where it was a month ago. Even then, it was low, but like I said I could manage it and life was pretty good. I’d love to be back there.

#42

@RecentQuitter So no improvements at all sexually duri g the years???

#43

I would put it this way. No, I didn’t regain my previous function, but ED drugs allowed me to perform reliably. The bigger change was mental. Feeling that I had returned my body to a much more normal physical condition and that I had figured out how to manage the situation dramatically improved my overall attitude and outlook and, as a result, I believe brought back my libido. In my case, I had assumed the loss of libido was a direct consequence of this drug. I’m not so sure now. I’m not saying this is the case for everyone, but that’s how it worked with me.

#44

So sorry to hear that you didn’t regain your previous function.
But did your fibrosis improve with ED drugs? (I mean, beyond improving the erection itself, maybe you got better in terms of the penile fibrosis)

#45

Hey dude have u considered eating keto? It got rid of all my extra weight i gained with ease.

#46

An update: I went back to see Dr. Jacobs in NY today. I had seen him years ago when this first all started for me. I told him my hope at this point is not to find a comprehensive cure but to figure out what on earth is happening to my metabolism and to find some way to bring it under control.

As I’ve said, my body just wants to gain weight. A switch seemed to flip when I quit propecia 7 years ago, and I figured out a way around it with the 5-2 diet. But about a month ago, it it basically crashed all over again. It’s insane. I’ve fasted six of the past 14 days and my food intake has been modest on many of the others days. And yet when I weighed in this AM, I was still higher than I’d been for the past 3+ years, when I was effectively managing my weight.

Jacobs ordered blood testing and reviewed the lab work I’ve collected from seeing a few different doctors the past few years. He’s curious about thyroid (I’m currently on Armour Thyroid, prescribed 2 1/2 years ago by another doctor who believes in treating patients for hypothyroidism if they have symptoms, even if the labs don’t show it). One thing we noticed in my lab work is that a cortisol blood test was ordered two different times and each time my number was at the bottom of the range (6.3 on a scale of 5 to 25, for example).

But the lab work didn’t add up to any clear diagnosis. If anything, he said, my low-ish cortisol would suggest weight loss, not weight gain. And my thyroid numbers are a little weird, but there’s no obvious culprit there either - seemingly decent free T3 and T4 numbers and RT3 not that bad either. TSH 3rd generation was low though.

Again, these are old numbers – at least 18 months old. He’s ordered new tests and we’ll see if something pops up on them that explains why in the last month my body just started piling on weight despite me fasting like Gandhi.

It’s baffling and maddening and kind of depressing. For all the misery I went through in the first few years I dealt with this, things really had gotten to a good place for me, until a month ago. (Also, to answer another questions here, the physical alterations to my penis didn’t change these past few years. Like I said, I found that ED drugs could do the job if I needed them and that, combined with feeling like I had my body back under control and could manage my weight and appearance, was enough for me.)

1 Like
#47

i feel for you and can commiserate, having lived through over a decade of the same roller coaster ride, especially the weight gain and loss. I found my weight gain to be associated with stress, and the only thing that helped me with stress was yoga several times a week. The period when I did it was the best in my life. I gradually upgraded to that Bikram hot yoga, which was a 90 minute class in a room about 100 degrees.

In the beginning, I wasn’t sweating most of the class, but after a few classes, I would start sweating the moment I walked into the room. The classes were intense, and I lost about 2 pounds a week, slept better and felt very good. One day, I was actually happy, and remember it keenly, because I hadn’t had a day like that in many years.

I had to stop going regularly because of lots of reasons, but any time I went, the positive effects lasted a while. About 18 months ago, my appendix ruptured, seemingly unrelated to PFS, and I almost died. Surgery, anesthesia, pain killers and a lot of pain killers later, I was back home recovering. I was 20 pounds lighter due to the recovery, and a couple of months later, when I was given the all clear from the doctor, I returned to hot yoga, and it didn’t feel the same, and I was exhausted and emotionally burned out. I gradually gained 30 pounds and continued loosing muscle.

Strict dieting helped me slowly loose 15 pounds, and I feel better, and can confirm mood is extremely correlated with weight, and stress drives it up. I’d consider a yoga class regularly to help with the stress we all suffer, and see if that doesn’t help your mood and weight. Also, occasionally the instructors mix in exercises that have resulted in morning erections. I don’t know enough to isolate them, but the result was positive on several repeatable occasions.

And hang in there. Progress will be made, and I’m sure their will be some treatment coming, maybe out of nowhere, maybe over time, but it will come.

3 Likes