I have been experiencing short bursts of anxiety about topics that seem very irrational to me . They come and go in a period of 12-18 hours. I have had about 6 episodes during the last year. In the beginning my "Scout" voice tried to over ride the negative thinking with rational thinking. During the last episode my "Lulu" voice ( named after Lupron) which I am sure is the cause of this thinking was in complete control. Lulu hijacked my amygdala and began spewing out scenarios that were very negative. Only in hindsight did my rational mind see they were totally irrational.
I recently had a lipid panel done as part of my annual check-up.
My Total Cholesterol was below normal and when I looked at the history of it going back 10 years I noticed a substantial drop-off starting right after I started on Lupron.
I got out my copy of "Your Blood Never Lies" by LaValle and started reading about the implications of low Tot. Cholesterol. The book states that "a persistent low level of Tot. Cholesterol will lower the level of serotonin in one's brain which may cause anxiety and depression."
Bingo! the correlation is clear and I believe may be a source in part for my anxiety.
I has a bad experience with the SSRI class of drugs 20 plus years ago so I am unwilling to go that route but might as a last resort.
I am going to try 5-HTP a supplement known to increase serotonin levels in the brain. Hoping to rebalance my brain chemistry. Another potential supplement is Tryptophan also a precursor to serotonin.
Your thoughts and suggestions are welcome.
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I have experienced the same over the last 2 years. Thank goodness for an understanding wife❤️! I tried Lexapro which made me deathly nauseous. Things are better after completing ADT and T very slowly recovers.
Yes a loving understanding partner is a blessing in this journey. A toast to our's and all the others out there.
I am in a catch 22 with continuing ADT. Going to try to tough it out for 24 months post radiation which would give me a potential chance for a cure. I am at 15 months. I have been very fortunate to have avoided most of the side effects of Lupron, why not this one too.
Not doing too well for the past 2 1/2 months. I'm optimistic it won't be the norm. (throw up/dry heaves, no appetite, poor blood labs, ended up in hospital a couple days, debilitating back pain)
You are so right about my profile ironically that's been on my mind for about a month.
Of course you know that there is possibility of cure with less than 24 months ADT !!! The absolute benefit past 12 months is NOT that great, from what I have read. Unfortunately, our Docs don't yet have the tools to determine which men will derive greater benefit form longer ADT.
Mine are a little different than yours. I don't get very anxious but get irritable, hostile, paranoid, depressed, and out of touch with reality.
For me, the fix is simple. A 0.1 mg/day estrogen patch alleviates most issues within a few hours.
Had depression in the early nineties and my psychiatrist went through various drugs and finally tried an old MAOI (nardil). 15 mg four times a day worked like a charm. Lots of dietary restrictions but they seemed very minor compared to hating life.
BTW, we tried numerous SSRIs and they were horrible for me. I felt far worse on them than off.
There are also NIH articles on the subject. I take all of the articles and studies with a grain of salt. I test things out in myself. It's possible that it is a placebo effect. But like my old psychiatrist asked me once "do you care?"
When I replace estradiol, not everything improves.
I note improvements in irritability, depression (or positive mood), and possibly bone loss. Breakthrough libido during ADT. But that might not be because of estradiol.
Trying to patch the SE of a drug by resorting to an army of additional drugs, brings to my mind the mythological Lernaean Hydra. You are aware of my trust upon the Minimum Effective Dose concept. No need to iterate.
I wonder if cold temperatures in general do this? I have PTSD from the aftermath of my prostate surgery that was made worse by a carpal tunnel surgery with only a nerve block.
I have less anxiety in cold temperatures vs warm. While getting radiation, etc, they always seem to want to put a warm blanket on me and I come off the table. I can't even sleep in my own bed with a heavy blanket over me or get comfortable with a room temperature much over 70. I had no problem with any of this before my RARP.
I’m working on rebalancing my brain chemistry as well. The mental health side of this seems to be more of my focus recently. I’ve pretty much quit drinking alcohol and now have come off my anxiety meds. Most exciting is I was admitted into a new clinical trail “Phase 2b, Randomized, Double-blind, Placebo-controlled, Multi-center Study of the Effects of Psilocybin-assisted Psychotherapy on Psychiatric and Existential Distress in Advanced Cancer” my ‘dosing day’ is coming up, fingers crossed for a successful coin flip. I need to find my spark- hoping this will help
Scout, while you scout for answers to this, you know by now what I always ask. Regardless of ADT related issues-what do your exercise habits look like? At 15 months your ADT side effects should be peaking, and it certainly seems they are.
Whatever path you choose to treat your cholesterol/seratonin issues, anywhere from more to substantially more exercise will help you.
I have had the same thing going on in my scrambled brain - had what appeared to be a serotonin syndrome experience on Duloxetine in August, which caused my depression to increase to the worst level ever, ceased taking Duloxetine and for about 5 weeks was the happiest i've been since before i started this cancer journey - happy enough i ignored those obsessive thoughts that i was having, until they were consuming vast amounts of my day - finally turned myself in to the Behavioral Health Immediate Care facility 9 days ago. anxiety and obsessive thoughts - they put me on Abilify 2 mg. an anti-psychotic drug. they told me i wasn't psychotic, but there might have been a 'nudge nudge, wink wink' in there. anyway 9 days on Abilify , not obsessing but still thinking too much about what i was obsessing about before. my wife tries to understand, but she says i am all over the place.
What you said there is making me understand I'm not crazy. I've been all over the map in the last 13 years. Experienced horrible depression, lack of motivation. My oncologist said maybe I should see a shrink because SHE doesn't have testosterone and she feels fine. That didn't go well with me.
I took an ADT vacation and that was the best I felt in 10 plus years. I was taking a physco drug for awhile for sleep, it worked for that but saw an ad on TV about uncontrollable muscle movements as a possible side effect. And the drug to fix that side effect , side effect is..... uncontrollable muscle movements!!!! can't make that crap up. I was jerking around in bed at night so I quit that garbage so I'm just toughing it out.
Be careful with all the pharmaceuticals they throw at you. While Xtandi, ADT we cant live without, some of those drugs are in my view dangerous.
I just realized that I have never been the same after my first dose of Lupron. I'll live with my messed up thoughts and stay out of the Pharma jungle.
what your oncologist said is unfortunately i think the way a lot of women (at least some of the ones i know) feel about men going through this. sure, she's fine without T, but she didnt grow up with T in her brain and in her blood 24/7, and then suddenly had it removed. And there is no way you can ever make someone with that attitude understand i think. Even a male oncologist who still has T will not , CAN not, understand what this is like. it's like quitting cold turkey from a powerfully addictive drug. I'll say it -Testosterone is addictive. and, like an addict, I suppose I will crave it every one of my remaining days.
Scout, interesting post. As I've previously posted I have had many of the same SEs, and I did see improvement after switching to Firmagon. In the 4 months before switching meds I felt that the only thing that kept me from really bad behavior was that most of the time I could tell that my irrational thinking didn't align with the way I have always thought in the past. Nevertheless, I was scared enough of the mental SE's that I would have quit ADT and taken my chances if I couldn't have gotten my onco to switch me off of Lupron.
I am currently tying to get a prescription for E2, but don't know if that is the answer. Please keep us posted on what you find out.
Thanks Carlos. I had a conversation with Richard Wasserug who wrote the book on ADT several weeks ago. He has been on Estrogen for 20 years and he did not think the E patches would help my mental issues.
I have gone through some ROUGH days since starting Lupron in July 2022. The ups, the downs, the depression, fatigue, memory (ex: some times I can describe what I am talking about but can't articulate/ say the word), libido has crashed, anxiety has some times been very obsessive thinking, etc.
I will be looking at some labs to see where I am at to see if there are any similar correlations.
Funny that you came across 5-HTP as a possible solution, because as I started reading your post I was thinking "Scout could probably benefit from trying 5-HTP"!
I've been using 5-HTP to deal with mood swings on and off for about 20 years now. As a shift worker I'd always found that swinging from night shift to days had me miserable and depressed for a few days after the switch. Through trial and error I found that 50mg of 5-HTP at bedtime during that period minimized that effect. It's a quick way to "top off" serotonin levels, but it's a rate-limited conversion so I don't believe it would help in really serious depression cases.
I'm coming up on a year on ADT and occasionally have a couple down days here and there, and can confirm that for me 50mg of 5-HTP at bedtime rights the ship.
I would avoid the SSRI path at all costs if I were you. I was put on Duloxetine (Cymbalta) in 2021 during a burnout (22 years in emergency services tends to do that to you). It was terrible, I felt like The Borg during those 4 months - completely cold and inhuman. My sister passed from Stage 4 cervical cancer early during my treatment and I barely felt anything - this helped with organizing all the logistics like funeral and estate etc, but I never grieved properly and got closure. Unless I'm borderline suicidal I'll never touch that stuff again!
If 5-HTP doesn't do the trick, maybe a low dose of CBD oil will help with the anxiety. Some in vitro research shows action against prostate cancer cells so it may serve a dual purpose.
I have been doing some further reading since my post and have some concerns that 5 HTP may cause changes in Blood Pressure and I am currently experiencing wide swings in mine. I am investigating Tryptophan and Myo Inositol as well .
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