Anyone else with Low Testosterone?

I am 13 months past my last 3 month Lupron shot, and so 10 months past the end of the course of treatment (November + 3 months)

My Testosterone has not budged in the last 3 months.
I tested in June, at labcorp, it was 149, again in early October, it was 98 (at MSKCC)(?), so tested again end October, at Labcorp, it was back to 149
Just got result from earlier this week. It is 151 (labcorp).
My baseline was low at 308 (MSKCC).
My ADT length of treatment was Only 6 months.

Very frustrated, the biggest problem is my “spare tire” around my middle and the (I assume related) stubbornly high triglycerides (now 311, up from 262 3 months ago.)

The only thing I can think of is to restrict my carb AND fat intake in a major way (I don’t eat a lot of carbs to begin with). I’ve lready stepped up the exercise, and it’s wayyy too early for me to consider supplementing,

Anyone else have this problem? I know it can happen, I’ve been told it’s rare for T to be permanently suppressed.

I can relate. I'm 18 months past a 6 month Lupron course and my last T level was 147. Six months earlier it was 149. My T level prior to surgery was on the low side at 298. The Mulhall video is interesting.

151 is certainly better than a double-digit number and at least it's headed in the right direction. But your frustration is certainly understandable 10 months after a short course of treatment. Give it some more time. Odds are you'll get back to where you want to be.

Is your doc at all concerned about your triglyceride levels? Those are high at 311. Do you have a history of any cardiovascular issues? I've been on a statin forever. I take a max dose. My triglycerides fell by over 50% as a result. Some people get muscle pain from statins and can't tolerate them. But I haven't had that problem. They've helped keep my arteries clean after a bypass over a decade ago.

What sort of exercise do you do? Fat burning? Do you like to swim? It's an excellent exercise to trim down and is easy on the joints. I used to love to run but can't take the pounding on the knee and hip joints any longer. Instead I use the Step Master at the gym. 35 minute routine. Then either light weights or head for the pool. It works for me.

Diet is critical. But sounds like you have a sensible one.

Good luck.

Pratoman,

On intermittent fasting (IF)...

Just had a doctor (a relative) point me to this NEJM pub came out yesterday. On that site, you have to join to read it, but it is free. I enjoyed reading it and was at a level I could understand, but plenty of detail and references. Relative said they are the "gold standard" in med pubs.

Here's an overview:

https://www.sciencedaily.com/releases/2019/12/191226084351.htm

Here's the full one:

https://www.nejm.org/doi/pdf/10.1056/nejmra1905136

The relative said he has been on IF three months and dropped 15 lbs.

Sorry about the low T. Mine is kinda low but can't do much about it right now because treating seems to put my uPSA on a uncomfortable up trend.

At least this IF program bodes well for weight and lipids. Seems your lipids are kinda high and might be more of a near term concern, whereas the T (I hope) will come back over time. Higher T won't help you much if you have a serious CV event.

Think my wife and I may go on IF. She has same weight and lipid problems, but to a lesser degree. Hoping it will help her. Will keep you posted if we do.

Robert

I watched the mullhall video posted above. I forgot about but remember now that I’ve seen it before.

Makes me a little sick to my stomach that I wasn’t told about the high chance of not getting full recovery before I made the decision. And even now, I’m being told that it’s rare, by the RO practice at the very hospital that Mullhall practices at.

Your post led me to look back at my own T scores since finishing ADT. 11 months after finishing ADT, my T was 126. But I'd forgotten how much it bounced around since then. The high mark was 313 and the low was 96. There doesn't seem to be much of a trend...it seems random. FWIW, my average T score during the five years after ADT is 182. I wish it were higher, but I can live with that.

As to my triglycerides, ADT didn't have much of an impact...when I was on ADT, my triglycerides were in the 120-135 range, which was pretty consistent with where they previously were. They did go down when I went low carb three years ago. They've been in the 70-90 range ever since. So at least in my case, I haven't seen a connection between ADT and triglycerides, while being low carb has been helpful.

Pratoman said...
Interesting numbers Michael. If i could keep my TG under control, i wouldn't really care all that much about the low T. We will see if it helps in a few weeks after keeping carbs AND saturated fat very low.

Mattam, not sure if you watched the Mullhall video, but he actually takes his fellow physicians at MSKCC to task for not being forthright about this issue

If you don't mind, refresh my memory on why low carb AND low fat? Is it due to your personal experience of not being able to lower TGs even with severely lowered carbs unless you also lowered fats? I have seen so many studies where TGs were slashed by dropping carbs way low, even with a high fat diet at the same time. Plus, that matches my own experience and that of several people I know. (but people vary) Man, I can't imagine anything tougher than both low carb AND very low fat. That only leaves protein for most of your calories, which has it's own cancer and maybe kidney related implications.

OTOH, I figure you now what works for you and you gotta do what you gotta do. I guess you have already tried intermittent fasting? And cutting carbs to almost zero, without severely cutting fat? (you probably have tried about everything, I imagine) I feel for you Bro, I know you have struggled with these TGs for a long time.

Final thought: lately I have read that TGs(and also the spare tire) are an indicator of blood insulin. They all 3 travel together. High TGs = High insulin. If so, then low TGs should = low insulin. If so, the body produces insulin in response to carbs, to help clear the sugar out of the blood and into the cells, or to store it as fat (though the body can also produce insulin in response to protein, which itself can also be changed to glucose by the body. But insulin is not produced in response to fat). No carbs(whether by drastically cutting carbs- even to zero for a while, or while fasting(zero carbs during fast)- equals greatly reduced insulin production which should equal greatly lowered TGs.

Ken, I know you already know all that, I'm just brainstorming, hoping some idea will be produced. Good luck, Bro!

Post Edited (BillyBob@388) : 12/28/2019 12:42:39 PM (GMT-7)

Billy Bob, I should probably be more clear and more precise.
First a point of information… The only time I was ever able to get my triglycerides below 100 was when I went very low-carb and very low-fat. i’ve also read a lot lately about needing to stay away from saturated fat to lower triglycerides
So with that said let me clarify I’m not going low fat I’m going low saturated fat. I’m illuminating creamy dressings on my salad and using olive oil instead with lemon for example. I’m also eating avocado to fill me up. I’m greatly reducing animal fats. No steak chicken, only fish. And I’m gonna try to do vegan A couple of days a week.

Second when I say low-carb I mean low simple carbs. I’ve change my breakfast for me from egg whites every morning with vegetables and cheese, ( not that that’s bad) to oatmeal, more specifically steel cut oats made with water. 1/4 cup = about 55 grams net carbs. But I am reading that oatmeal is good for lipid control, so I’ll try it. And I’ll know more in a few weeks when I retest.
Bread, out. Pasta, out. Rice, out. Croutons, bread crumbs , out.
You may be right and probably are, about insulin. For me, low weight - low triglycerides, low TG = no spare tire. We’ll see if that still holds for me with the low T.

If this doesn’t work in getting TG down, then I may ask my PCP/Cardiologist if he’d be willing to prescribe metformin, off label.

Another point I’ve thought if.... I said to a friend of mine, a retired pharmacist, that if I keep walking around with TG in the 300’s, or even 200’s, I’m going to eventually stroke out, so I have to do something. He thinks that with my total Cholesterol at 116, and my LDL (calculated) at 28, I probably don’t have to worry about the TG as much.
Don’t know if that’s true, don’t even know how to research it.

steve0 said...
My T is at 187 and getting a Pet Scan and then next decision if I go on ADT. If no mets then what do I do?

Steve, if the pet scan shows something, it might be a good idea to ask about spot radiation rather than ADT.
If it shows nothing, why jump on ADT, seems like a pretty low PSA to be starting ADT

Pratoman,
I share your pain.
My last Eligard hormone deprivation treatment was Sep 2017. I was supposed to be a 3 month treatment.
I thought my body would have recovered by Jan 2018. Naive.

Eligard is the same chemical as Lupron with a slightly different injection protocol. My insurance company did not want to pay for Lupron.

I was on it for a total of 9 months. 3 months before SBRT and 6 after.
The 6 after was a big mistake.
31 Jan 2018, 5 months after the last treatment, my total testosterone was 13 ng/dl.
Low 2 digits. 13

The worst symptom was fatigue. I could not walk more than 1 city block. That is 1/20 mile.
Almost 20 pound weight gain.
Also erectile dysfunction. I was 75 years old at the time and had never experienced ED in my entire life.

10 months after Eligard should have worn off it was up to 211. Slightly better than where you are now.
Started Clomid 25 mg/day which sometimes gets the body to produce more testosterone.
Stopped Clomid after 4 months Dec 2018 with T=350 because ED had gotten worse. Fatigue had improved.

Oct 2019 T around 300, had testosterone injection.With in 2 days I felt much better physically. Effect supposed to last about 4 weeks.

Nov 2019 Started Clomid again.
4 weeks later T= 436.
PSA =.25. Over the past 2 years it has stay fairly constant. .2 to .3. Increasing T level had no negative effects.

Maybe Clomid is working. My urologist says to do T test again in 3 months.
Depending on the numbers then, I may push for Testosterone injections. That is the only thing that had a dramatic effect.

Summary: it has been 2 years since HDT should have started wearing off.
I think my body is slowly starting to recover. But I still get very tired some days.

Bobbiesan thanks for the ideas.

Richard, sorry to see you had the same experience as me....when I saw my RO’S NP, (Ro was away), she set they were looking at a trial using cloud to increase natural production of testosterone and I might be a candidate. So we’ll see. Glad it seemed to work for you with no apparent effect on the cancer

Steve, there is controversy about when to start ADT after failed radiation. But i dont think most RO's would recommend it at less than 1.0 psa.
And as i said, if there is a chance you can find a hotspot that can be radiated, even if it is not curative, it can delay starting ADT, and the longer you can do that, IMO the better.

P.S. read my signature. I am not a doctor. Its just my opinion. If your Dr recommends starting at this low level i am not saying to dismiss it, i am just saying if it were me i would ask him his reasoning.

MG0351 said...
I had my last Eligard shot on 8/28/19
My last T level was 10....

My last Lupron shot was in Jan 2018, 24 months ago.
My last T level was 14.