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). 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 in June, but that was long 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 still have low energy and only sporadic desire to do anything like exercise (forget sex -- that's gone), and 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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Unfortunately we can't answer your question now since our resident 5th Grader expert is presently being punished for texting without his iPhone. His parents sent him on a three week vacation in Gary Indiana. We'll try to get you an answer when he comes back. Hang Tough!
It’s a very good sign when you triple or more your free-T (over several months) and your PSA remains low. Free-T will reflect the impact of whatever your SHBG is, assuming it is accurately assessed. Are you calculating your free-T manually or using a lab to determine it? Either way, please provide details.
I don’t have a theory to explain why your PSA started a downward plunge in Jan 2024 and why it is continuing at about 10% of the level it was at a year ago. But your lab data don’t support the theory that SHBG is the cause. I can provide more detail to support that statement when I get home next week and can access my computer. (Right now I’m traveling and only have my phone.)
I’m similar to you in quite a few ways. My SHBG is way above ref range; I’m using exogenous T gel to raise my free-T, this isn’t causing a rise in my PSA; I’m also on thyroid meds.
What do you see as the downside from increasing your testosterone gel dose until you start to feel a positive effect on your energy level?
the lab is calculating Free-T and % -- is your free-T % in normal range? It was my family doctor who proposed that the SHBG was scooping up all the T it could latch onto. It's all very weird, with no explanation so far, which makes me feel very much uncertain about this extraordinarily low PSA instead of happy. Is the SHBG somehow masking PSA? I'll be interested to see if the increased thyroid dose does anything, but it was really minimal -- went from 875mcg/week to 900, and it was T4/levothyroxin, not liothyronine (T3/thyroid hormone), which I'm also taking twice daily. She also told me to take 200 mg of selenium with the liothyronine. She increased the T4 because while my TSH was fine, the other two were near the bottom of normal range. But like I said, I have no idea if thyroid has anything to do with testosterone or PSA, and again these T, PSA and SHBG changes predated the thyroid changes. Thanks for your reply -- it's interesting to find someone with similar issues.
Edit: I forgot to note in my OP that I'm also using a progesterone cream with the T -- only because when I first started using T more than 20 years ago, my doctor at the time prescribed a cream with 50mg T and 45mg progesterone -- I forget exactly why, I think something to do with the progesterone inhibiting the formation of DHT, which is the really active form of T that you don't want in terms of PC. But I got PC anyway and had to stop the T/progesterone after only about 6 years (the best years of my life!). My current doctor already thinks I'm a little nuts so just shook her head when I told her about the progesterone. She's probably right about the nuts part.
It’s very plausible that your thyroid situation is causing elevated SHBG. But let’s focus on your free-testosterone. The part that’s hard with that is accurately determining your free-T. See this article for more than you wanted to know about accurate T and free-T measurement: academic.oup.com/jcem/artic...
We’re not talking about small differences here. Example: Labcorp (by mistake) ran my T using two methods from the same 8/20/24 blood draw.
Total T using LC-MS assay at Esoterix send-out lab Calabasas Hills CA (per lab order) was 864 ng/dl (one week turnaround)
Total T using ECLIA assay at Labcorp San Diego was 1377 ng/dl (+59% vs the gold standard assay methodology; 24 hour turnaround). This is not a fluke. I’ve seen this magnitude of discrepancy in these two Labcorp assays previously.
Interestingly, both of these assays have the same reference range: 264-916 ng/dl.
Turning to assessing free-T, I frankly don’t think it’s ideal for PCa patients to ask the lab to provide this info. I prefer to calculate it myself, starting with an accurate number for total T, plus SHBG and albumen.
I reached that conclusion after seeing the huge range in free-T results being reported by Labcorp and other labs for me over a period of many years. I only recently came across the above article which appears to agree with what I concluded.
My questions:
What lab and assay are you using for total T?
Please send me your lab results over the past year for albumen, total T, free-T, and SHBG.
I will send you my calculation of your free-T over that period for comparison.
You asked about my free-T level. It's currently averaging 7 ng/dL, based on calculation from the site listed below. I'm going to gradually increase my free-T to see if that helps with muscle rebuilding. I went thru an 8-yr period starting in 2015 with negligible free-T and lost a lot of muscle in that period.
I'd drop the menbendazole to start. With PSA that low what possible good could it be doing? I've never been a user or believer in it and I take supplements and MCP and such.
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