My experience as a Clomid Unicorn

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Hank

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Just chiming in here. I was googling for the phrase "what does it mean when males respond well to clomid" and came across this. So I joined up, and here is my situation.

41 year old male. Around age 39-40, I was having anxiety attacks, panic attacks, heart palpitations (sometimes a skipped beat, and less frequently, what felt like an arrythmia). I felt tired, and weird symptoms would come and go, like feeling spacey. I ended up in the ER thinking I was having a heart attack, they checked me out and said I was fine. All of this came out of the blue, from age 0-38 I really didn't have anything more than normal anxiety (work stress, etc, but I seemed to deal fine with it). I used to play sports, sort of thrived on that feeling.

I spent the next 6 months working with my doctor, first checking out all kinds of cardio things. Seemed ok (although we later found out I have a bicuspid aortic valve, which may eventually require heart surgery, but as of now it looks OK supposedly). We checked digestive, and sleep disorder, and all sorts of stuff. Eventually I said to the doctor "Hey doc, what about low T?". He said he didn't think that was the issue, but sent me for a test anyway.

The first test came back around 300mg. The second test came back at 250 or so. My estradiol was around 35 at the time. My LH and FSH were in range, but IMO they were low (but the doc said they looked OK).

I was sent to an endo (female, interestingly enough) and we discussed options. She was pushing the creams ... or T as an option. I brought up Clomid, since I really wasn't crazy about turning my nads off permanently. I was theorizing that maybe being overweight (30 pounds or so) I am just aromatase efficient, creating a lot of it, and lowering my T as a result of higher E. My game plan was to lose 30 pounds, and then see where I stood. We agreed I would try the clomid, maybe it would alleviate the panic and anxiety symptoms that were making it hard to work.

Well, I will say that for the first 4-6 weeks I felt virtually NOTHING. My dosage was a half pill every day (I think this was 12.5mg per day).

Then suddenly things began to change. I started to feel normal again, and the anxiety and panic and skipped heart beats stopped entirely. My libido increased (I did not have ED, just low libido - i.e. a lack of desire to engage in sex, always tired, but once I did engage I was fine).

We tested my numbers 3 months later, and my T was at 780, my E was at 60. My other numbers came up as well (LH, FSH). Everything was in range, the E was significantly high, it was the sensitive E test.

We continued on the dose - I had not lost a pound (more on that later) - so she said let's see if you can lose some weight now feeling better. But about 2 months into my happy days, I came down with prostatitis! This scared the heck out of me ... I googled and was reading about how T and/or E (it's all debated everywhere) can cause prostate to grow, get inflamed, etc. So I took it upon myself to cut way back on my clomid dose, like down to 12.5 every three days. A 75% reduction.

The prostatitis was NO FUN. Painful to pee and had to pee all the time. It lasted for about a month and didn't really improve at all for the first 2 weeks, and then faded away over the next couple of weeks. But while this was all going down, I came down with the anxiety symptoms again, bad. So when my prostate felt better, I went back up to 12.5 three of every 4 days.

Again, it took a month for the anxiety and panic attacks to go away, but they finally did again.

Fast forward 3 more months, and I was re-tested. This time, my T was an even 1000, and my E was at 66. I was also having a very hard time losing any weight. Not only did the pounds seem stubborn, but my cravings for junk food were higher than they used to be. My inhibitions about eating bad seemed to be gone, so my workouts were often offset by some IPAs or a bad meal or two.

The endo told me I should just stop taking the clomid cold turkey, she said that she thinks I may have just been going through "something" that has resolved itself, because I was responding so "robustly" (her words). I told her that scared me, and I would rather taper off, and she said no problem.

So I am now down to 12.5 mg, every other day. We will re-test in 2 months time, and go from there. Maybe I will taper off and have OK numbers, and this was all a bad dream that lasted 2 years. More realistically, I will find some dosage that gets me "just enough" T to be normal, and/or lose that weight and see if the aromatase was really the main culprit.

I will also throw in that my original doc had me scanned for a pituitary tumor (terrible experience, ugg). They called me and said the test was negative, and I was all set. But then my doc said he reviewed it and had some concerns. He said my pituitary seemed to have a little "lean", which could imply some extra weight (from a micro adenoma) that wasn't yet visible. So that's out there - he wants me at some point to re-scan, which of course was horrible so I am not exactly dying for that.

Lastly, side effects of the clomid?

- Zero vision issues, thankfully.

- Sometimes my prostate feels a little inflamed. I do think all this T/E is making it unhappy. I have this deep down fear that I have prostate cancer. My doc checked my PSA, and it was 0.6 or something, and stayed that way 6 months later. He said my prostate is enlarged (he said like 25%?), but this was at the height of prostatitis. I do think it's enlarged, I have to go more frequently than others my age. I also wake up to urinate more often than not around 3-5 AM on normal nights. Can't seem to sleep 8 hours without having to go, only 5-6.

- Seems hard to lose weight when the E is high.

Hopefully this all helps someone. But I am certainly a strong responder to the clomid, and had no vision issues, just the one bought of prostatitis (which my cardiologist says is certainly from the clomid, and my endo swears is unrelated and just coincidental). Yes, I also question my endo's skills ... she happens to be my primary's spouse, so it puts me in an awkward spot to ask for a new endo.
 
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Defy Medical TRT clinic doctor
Strong drug that can be great if used in the right amount. I take 1/8 mg or 1/4 mg once a week depending on how I feel and it's a HUGE difference maker.
 
Am I missing something here? Why haven't you or your docs tried to address the E2 issue?

A great question, here are my answers:

1. My doc is an endo (and female). She claims to have worked with lots of guys on low T issues, but I get the feeling that it's probably nowhere near the amount of patients that perhaps an aging clinic urologist works with. I think a lot of her work is with diabetes and other endocrine issues. She never mentioned Clomid as an option, she was recommending topical cream for T therapy, and as a secondary option, the T shots. I asked about the Clomid option, and only then did she say "yes I have some patients that do that" and she agreed to go that route with me.

2. I never asked for AI, but I did tell her I thought I was a "strong aromataser" (if that's the word), and that I felt my estradiol was high. She told me in her opinion, it wasn't a big deal or that high.

3. The original plan was a "reset", which is that we try to clomid me up, and see if it "resets" my axis. If that doesn't work, I am sure she would then recommend standard T therapy with cream or shots. But at that point, I would consider trying the clomid+AI route, whether its through her, or someone else.

4. I am leery of side effects, and AI seems to have more issues than just clomid alone. Prefer path of least dosage if it can work, but if not, would consider adding the AI. T shots for life sounds terrible, but worth it as a last resort.
 
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You said your LH and FSH were low. What were the numbers?
We tested my numbers 3 months later, and my T was at 780, my E was at 60. E that high could increase SHBG, which would lower Free T. What is your SHBG and Free T?
You are now at the dose of 12.5 mg EOD. This is what Dr Crisler recommends. He believes that the reason why Clomid often fails is that it is dose at 25 EOD or more. So you may want to stay at this dose and hope for the most for a while.
Why do you fear you have prostate cancer?
Also, you should be on an AI with E that high.
 
You said your LH and FSH were low. What were the numbers?
We tested my numbers 3 months later, and my T was at 780, my E was at 60. E that high could increase SHBG, which would lower Free T. What is your SHBG and Free T?
You are now at the dose of 12.5 mg EOD. This is what Dr Crisler recommends. He believes that the reason why Clomid often fails is that it is dose at 25 EOD or more. So you may want to stay at this dose and hope for the most for a while.
Why do you fear you have prostate cancer?
Also, you should be on an AI with E that high.

Hey Mike, here are the results from my worst (of two) tests before I was on anything:

Test results (taken at a time of severe stress and anxiety):
Total Testosterone: 204 (250 - 827)
Free Testosterone: 40.3 (46.0 - 224.0)
TSH: 1.29 (0.40 - 4.50)
Total T4: 8.4 (4.5 - 12.0)
Free T3: 2.7 (2.3 - 4.2)
FSH: 2.6 (1.6 - 8.0)
LH: 1.7 (1.5 - 9.3)
Progesterone: <0.5 ( < 1.5)
SHBG: 19 (10-50)
ACTH: 29 (6 - 50)
Cortisol: 12.8
Estrone: 41 ( <= 68)
Estradiol Ultra Sens: 20 (<= 29)
Estriol: <0.10

And here is what my most recent test was, on 12.5mg every 3 of 4 days:

Testosterone: 1000 ng/dL 250 - 1100 ng/dL
Free Testosterone: 161.0 pg/mL 35.0 - 155.0 pg/mL

Estradiol 66 pg/mL < OR = 39 pg/mL
Prolactin 5.5 ng/mL 2.0 - 18.0 ng/mL
FSH 3.2 mIU/mL 1.6 - 8.0 mIU/mL
LH 5.0 mIU/mL 1.5 - 9.3 mIU/mL

As for the prostate cancer ... just because (A) I am a hypochondriac and (B) have enlarged prostate symptoms that started at age 38, and (C), did I mention I am a hypochondriac?

There was a period of time where ejaculation was slightly painful, when I was at the 12.5mg per day, every day dose, earlier in the process. I do think the higher doses aggravate my prostate.
 
Sounds to me like you accomplished your goal. I'm surprised she didn't put you on some Anastrazole for your high E2. I wish I had those results with Clomid. Well, don't want to be 1000 total T, but you know what I mean. As far as the weight, (I'm saying this as a former bodybuilder) you have to want it pretty intensely. You have to get used to only eating enough to make the hunger pain go away, but not quite enough to feel satiated. Basically, you never get to pig out (unless you specify a cheat day), plus you need to eat about every 3 hours. And one thing I always harped on my clients, eat FAT. Man American has got it in it's collective brain that fat is bad... plain ol un-true . Eat Coconut oil if you are worried, tons of studies linking it to good health.
 
Wow Hank, i know this is an old post but your scenario identical to mine. Out of nowhere around 38-39, panic attaches, weird heart stuff, pituitary MRI, etc etc. Total T was around 295 when they finally tested, and estrogen at 9. Did clomid, raised numbers felt a little better. Did injections, caused more anxiety, eventually tapered off. Now i'm off everything and T level was at 546 or so. Any resolve for you?
 
Wow Hank, i know this is an old post but your scenario identical to mine. Out of nowhere around 38-39, panic attaches, weird heart stuff, pituitary MRI, etc etc. Total T was around 295 when they finally tested, and estrogen at 9. Did clomid, raised numbers felt a little better. Did injections, caused more anxiety, eventually tapered off. Now i'm off everything and T level was at 546 or so. Any resolve for you?
Hi, did you just gradually reduce your dose then stop? Or run a restart with hcg and clomid?
 
Hi, did you just gradually reduce your dose then stop? Or run a restart with hcg and clomid?
I stopped injections and went on 12.5mg Clomid every other day for about a month then quit everything. Testes got bigger, was shooting ropes, felt a little better overall.
I need to get my numbers checked because it’s been sometime now but mine naturally came back up with no assistance somehow.

I also switched from Lexapro to Prozac because I never really felt that great on any kind of testosterone therapy So I wanted my system clean to rule out one variable.
 
When your test was 295, were you overweight? Are you in better shape now? Just trying to work out what's different that would cause your natural levels to be so much higher now?
 
When your test was 295, were you overweight? Are you in better shape now? Just trying to work out what's different that would cause your natural levels to be so much higher now?

Nothing as far as exercise or diet or weight has changed. Just all the sudden my heart acted up one night, went to ER. From that night on i have never felt the same and have chalked it up to anxiety and chemical imbalances. Maybe my anxiety finally peaked and getting older allowed it to blow a fuse? After a couple weeks I asked doc to check my T, it was low. So I thought as do many, that low T depressed me and gave me the anxiety. Also was going through a toxic relationship so that prob didnt help.
Finally stable and no panic on prozac, and diazepam when needed, but I still feel there is something off in my head/body as I never feel "normal" like I did prior to that first ER visit.

I feel contributing factors can really drop T levels. I feel my sleep is better now than it was, and very alcohol and not as much stress i'm sure doesnt hurt.
I'm curious as what my T levels will be, and I plan on trying to hit the lab this week or next.
 
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Nothing as far as exercise or diet or weight has changed. Just all the sudden my heart acted up one night, went to ER. From that night on i have never felt the same and have chalked it up to anxiety and chemical imbalances. Maybe my anxiety finally peaked and getting older allowed it to blow a fuse? After a couple weeks I asked doc to check my T, it was low. So I thought as do many, that low T depressed me and gave me the anxiety. Also was going through a toxic relationship so that prob didnt help.
Finally stable and no panic on prozac, and diazepam when needed, but I still feel there is something off in my head/body as I never feel "normal" like I did prior to that first ER visit.

I feel contributing factors can really drop T levels. I feel my sleep is better now than it was, and very alcohol and not as much stress i'm sure doesnt hurt.
I'm curious as what my T levels will be, and I plan on trying to hit the lab this week or next.

Thanks for the detailed reply. From what i've read, you wouldn't be the first person who didn't find trt was the magic bullet they were hoping for. Mind you i think in a lot of cases it's more down to the protocol used than trt itself that's the problem. Maybe in your case it was, like you pointed out, down to your life circumstances at the time that drove your levels down. Fingers crossed for you that all's well at your next checkup.
 
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