update: advice needed - HT recovery

It can take awhile for 2 reasons:

(1) In a study of 9-month HT after prostatectomy, testosterone recovered to normal in 37% after 3 months, 66% at 6 months, 86%at 9 months and 93% at 12 months.

/www.ncbi.nlm.nih.gov/pmc/articles/PMC3739223/

(2) After radiation, testosterone often gets depressed for a while even without HT. Mine dropped to about 150 and finally got back to normal after a year.

Because you had both HT and radiation, you got a double whammy. You can talk to your doctor about clomid and/or HCG to jumpstart your natural production.

Richard,

Not wanting to give you bad news, but I had my last 3 month Eligard shot about 2 years ago. My testosterone is now at a whopping 26.4. I was on Eligard for 24 months after IGRT. PSA is still < .05.
MO keep saying the T will eventually come back up. He also says we are still killing cancer cells.

Best wishes
Carl

JNF said...
....ADT drugs have a half life of about six months, so there is still a good amount of the drug in your system for some time. Second, it doesn't take much of the drug in your system to continue to suppress the production of T. My uro said that as long as there was about 10% of the drug still in the system it would suppress the T production.....

A excellent point, and a superb reason to look VERY carefully at anyone suggesting "throwing the kitchen sink" at treatment by extending ADT, Eligard, Lupron, etc., beyond six months.

Caveat Emptor!

RichardNY said...
Are there any negatives using them?

I'm not aware of any side effects in men, although hormone systems tend to get interrelated. I suppose it is prudent to monitor liver function and thyroid levels. HCG is in vogue now for the dubious use of weight reduction in women. A good friend of mine takes clomid everyday to prevent his balls from shrinking while he is on TRT, and seems to have no SEs from it.

Perhaps PDA will join in - he took clomid but it didn't seem to fully restore is T level.

Richard,

I agree with your urologist that the first thing you need to try is patience. If you read the study that Tall linked you will see that T recovery takes time. Your last shot was five months ago but it was a three month shot and it only started to wear off two months ago. If you look at figure 1 and figure 2 in the study you will see that the magic usually starts happening around three months after the last shot theoretically wore off.

That said, I would recommend the application of patience in strictly limited amounts. While T recovery takes time for everybody, you do seem to be a bit off the pace and not moving in the desired direction. It could be that if you give it a few more months and test again that you'll be off to the races. If things don't seem to be happening eight weeks from now when you test again you can certainly talk to your doctor about clomid. It's a small pill that you break in half and take every day. It's reasonably safe in the tiny little dose that is given to men (women with fertility problems get a lot more) and, while getting insurance to pay for it to treat hypogonadism in men can be a struggle, it's not particularly expensive if you have to pay cash, and it often works. [ But, it didn't so much for me. ]

The next thing to add to the mix would be human chorionic gonadotrophin (hCG). It is an injectable drug that you get a few times a week. Most people do the injections themselves. The instructions will say to inject intramuscularly (bigger needle, a bit unhandy) but studies of subcutaneous injection (smaller insulin needle, easy) have found that works just as well. It's even harder to get insurance to pay for hCG but, if you shop around for discounts, it is not that pricey.

If you want to push the pace you can start the hCG at the same time as the clomid if you can talk your doctor into it.

My story, briefly: I had RP in 2012 at the age of 59 which was followed by adjuvant radiation and two years of androgen deprivation when my post-op pathology report came back somewhat alarming. My baseline T score before ADT was 699 ng/dL. At 1 month after my last shot should have worn off my T was 14. At 4 months it was 22. At 7 months it was 106. Then, testing every three months, it recovered slowly -- 198, 239, 271, 273. I had reached the lower boundary of the "normal" range after 18 months but was obviously starting to plateau. Then it started to slide. Three months later it was at 206 then 188 three months after that. At that point I added the daily clomid. Three months later my T score had rocketed to a disappointing 199. But I carried on and in another three months -- 126. Drat! Clearly the clomid wasn't doing it. I added hCG to the mix. It's a bit hard to find dosing for hCG for hypogonadial men. What my doctor and I decided on was 1,667 units three times a week for the first two weeks, then 1,250 units twice a week thereafter. Three months later I was at 185. Disappointing, but headed in the right direction again. But, then last month it came back at 172. Clearly, the hCG wasn't doing it for me either. Bother! So, about two weeks ago I started on a testosterone replacement gel (that I smear on my chest near my collar bone where the skin is thin). In another three months we'll see how that works.

Ok, I missed the mark on the "briefly" part. Sorry.

So, to summarize my advice:

Be patient for now and see what happens... but not too patient, or patient too long.

If a few more months don't show real progress, talk to your doctor about clomid and hCG. You may have to educate him/her a bit. Clomid and hCG are safe and usually effective for stimulating natural T production, but they aren't part of the usual black bag of tricks. Don't be surprised if your insurance balks and you wind up paying cash. Check with GoodRx.com for prices and discounts at local pharmacies.

While you are working all this out stay as active as you can. Exercise helps with the fatigue and the lack of energy that often accompany hypogonadism, and it seems to help somewhat with the mental vagueness.

Good Luck. Keep us posted.

Richard,

I'm sorry my story isn't more encouraging. I'd love to have a story of fast and easy success. But I don't. It is what it is. I am still hopeful that someday I can share a story of eventual success after a number of disappointments. But I'm still working on that.

As for your question: fatigue and stamina problems? Sure, I had those. The fatigue was worst during the radiation, and for about a month afterwards, but the worst of it resolved, leaving behind a general lack of energy which I blame on low T.

During the two years I was on ADT I was on two antidepressants -- fluoxetine (Prozac) and bupropion (Welbutrin). They seemed to help with the blahs enough to keep me moving. Shortly after the nominal end of my ADT I weaned myself off of the fluoxetine but I contine the bupropion. I may see if I can drop the bupropion if my T replacement works out.

You might want to talk to your doctor about depression. Prostate cancer and its treatments can grind a man down. There's no shame in getting a bit of help.

I just had a blood test performed a few days ago.

PSA=.1ng /ml
Testosterone =104 ng/DL

2 months ago, Testosterone was 13 ng/DL

This is finally some positive news. Recovery has started.
There is still a long ways to go.

I still get tired very quickly on short walks, but I do feel encouraged and will try to start an exercise program.

Sr Sailor,
Thanks for the encouragement.

I was thinking along the same lines that other medical factors might be part of the fatigue problem.
I made an appointment with my primary card physician for next week to review all the medications I am taking and to check if there may be additional factors that are aggravating the fatigue.

"Does anyone have any thoughts or suggestions?"

I won't bludgeon you with text.

"it might take awhile"

ed

I use GoodRx for everything, and Costco is nearby, fortunately. I do not even have a part D plan, but my wife does for $20/mo to avoid the penalty if she should ever need routine meds.

My hope is that any expensive drug I might need I would be able to get thru the VA. Granted, they don't carry everything, but I'll cross that bridge when I get to it. Two years ago I was on only one daily med, now I'm on about six. Generics with GoodRx still wins out, at least for now.

It also "helps" being classified as poor... fixed income on social security. The one expensive drug I get for free thru the manufacturer's patient assistance program.

Here is an update
I saw my urologist today.

Testosterone is in low normal range. But, I am seeing only a little improvement in physical stamina or sex life.
Clomid for 4 months,
Testosterone increased, but 2 months passed and time may have been a bigger factor than clomid.
After starting clomid my sex life went from barely able to experience an erection to absolute zero even though testosterone level went up 50%

Current plan is to stop clomid and evaluate after 6 weeks.
If no improvement, will try testosterone injection to see if that helps my body behave the way it should.

08/02/2018 Testosterone: 225 ng/DL
I started Clomid approx Aug 15
10/11/2018 testosterone was 363
Testosterone now 340 Dec 6, 2018 psa=.3
.
Reading medical literature studies I see reports that clomid improves testosterone in 75% of men. Once again, I think I am in the other 25%