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Why is my PSA so low?

kapakahi profile image
8 Replies

For about 9 years after my last HIFU, my PSA hovered in the 1.0 - 2.0 range, and testosterone around 200 or so. That's what they were in July 2023. But in January 2024, PSA plunged to 0.248 (T wasn't measured then). In early March, PSA continued down to 0.148, and testosterone crashed to 60, and free T to 0.2% (ref range 1.8-3.2). For the first time, SHBG was also measured -- 421 (ref range 9-68).

So tested again in late March, and T had risen to 267, free T to 0.5% and SHBG dropped to 174. Weird.

I was feeling really crappy in a way I've never experienced since I began anti-depressants 25 years ago -- lethargic and depressed in the way so often described by guys on ADT. So my doctor agreed to try me on testosterone gel and see how it goes -- 25mg daily, starting in early May.

By late May, T rose to 408; free T tripled but still at only 0.6%, one-third lowest normal. SHBG dropped to 148 -- I guess that's why free T rose. But PSA was 0.15 despite using T -- maybe because SHBG was still gobbling up a lot of the supplemental T?

In July, T was up to 580; free T was up to 0.9%, still only half the lowest end of normal. SHBG was down to 101 -- again, free T up and SHBG down, but both way out of normal range. And PSA was steady at 0.145. Again, excess SHBG?

My doctor can't find any explanation for why PSA dropped to about 10% of what it had been for years after HIFU hemi-ablation, or why testosterone fell through the floor, or why SHBG was so high (again, if it had been tested previously it was years ago). The only things that seem to be explained are the rise in T (because of T therapy) and the rise in free T (because of T therapy and maybe the drop in SGBG). Yet the rise in T and free T didn't affect the PSA count.

I do have Hashimoto's disease -- I've been on thyroid meds for about 20 years; my thyroid antibodies are way high, more than 4,000 (normal is below 115). My dosage was increased in January, but that was after these weird levels of PSA, T and SHBG showed up. I've read that thyroid has something to do with sex hormones, not sure what, but my dosage was pretty steady for all those years, fluctuating up and down only slightly depending on blood counts; when I was feeling so bad my doctor raised the dosage a bit, but again, that was after the PSA, T and SHBG got strange.

So I have zero idea what's going on. I mean, I want to think the low PSA is good -- but could it be misleading? I'm not taking any supplement that could mask it (that I know of, like no turmeric), and nothing in my supplements has changed anyway. I'm still taking the same amount of mebendazole since 2019; not sure why, given the paucity of evidence for it; it's probably a "just in case it's working" thing. And again, the changes in PSA, T and SHBG seem to have occurred independently of that (unless the mebendazole had some kind of very-much-delayed impact).

And though I'm feeling better since I went on the T gel, I can see by the low free T that I'm not getting the full benefit of the supplementation.

I've searched as well as I can for explanations, but nada. This site has more wisdom and expertise than any other (I've referred many guys to HU who have had PSA scares and worse), so I thought I'd ask: Does anybody here have any insight into any of this? Thanks very much, guys.

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kapakahi
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8 Replies
kapakahi profile image
kapakahi

forgot to add: I've never had advanced PC, it's remained confined since diagnosed in 2008.

Murk profile image
Murk in reply tokapakahi

Wow and my only thought is if your in the USA to get two more opinions from the best, visit MSK New York, MD Anderson Houston. Mayo Rochester, or maybe even UCLA California. Reset and start over in your analysis. Heck have a mini vacation and travel. You and your significant other deserve the best!

All just my 2 cents ;-)

kapakahi profile image
kapakahi in reply toMurk

Thanks. I thought I might get some insight here first. I probably need an endocrinologist. (Sorry for the delayed reply -- I'm not getting email notifications though I checked that box)

janebob99 profile image
janebob99

Congratulations on getting your T back up, with a stable PSA! You're doing all the right things. You may want to shoot for even higher T levels. But, certainly, your case is unusual.

What's your Bone Mineral Density from DEXA scan? that's important to know.

I, too, have Hashimoto's, and hypogonadism due to a pituitary micro adenoma. I'm currently taking Orgovyx, and estradiol gel to combat the bade side effects of ADT. I completed SBRT last months, and my PSA is 0.2 and continues to drop.

Bob in New Mexico

kapakahi profile image
kapakahi in reply tojanebob99

Thanks for your reply. I had a DEXA scan earlier this year, can't find the results anywhere yet, but I know it wasn't anything worse than a bit of osteopenia; that's another reason my doctor OK'd T therapy. I also have hypogonadism in one testicle due to varicocele dating from adolescence.

NanoMRI profile image
NanoMRI

Have you considered imaging to 'have a look'?

kapakahi profile image
kapakahi in reply toNanoMRI

Like MRI of the prostate? I've had that -- doctor can't see much because of scarring from HIFU treatments. What other kind of imaging would help? (Sorry for the delayed reply -- I'm not getting email notifications though I checked that box)

NanoMRI profile image
NanoMRI in reply tokapakahi

I understand how the HIFU scarring could interfere with imaging in the prostate bed. I have some scaring from my unsuccessful salvage RT and two surgeries - one reason I always get second opinions of radiology findings.

This coming Tuesday I have yet another skin biopsy - two melanoma's to date. My attention to self-checking my skin aligns with all the imaging I have done (some might say excessive) looking for remaining obscure pesky prostate cancer.

This years Pylarify PSMA, done in July at 0.033, (I had RP nine years ago), identified a liver lesion. After several discussions investigation what would be next best step I found my way last Friday to a MRCP MRI with pancreatic protocol - awaiting results after this holiday weekend.

For prostate cancer we have several PSMAs, fluciclovine and Choline (proprietary to Mayo). I have the understanding that when we are on the hunt for few micro mets it may take trying several contrast agents in hope one will provide earlier than expected findings.

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