RRP Oct 2016 with slowly rising uPSA over past year in addition to several other issues I’m dealing with including hypogonadism, intermittent TRT, osteopenia, wide fluctuations in lab values regarding Estradiol, DHT, TT, fT, FSH, LH; depending upon treatment, and most recently a “pain in the butt – literally”!
Understanding this has proved to be above my pay grade. Many specialists have been involved. No one seems able to put things together, probably because it crosses several specialty lines, even though many are probably related.
I want to be proactive if there is anything, I can do to prevent a BCR.
Currently TRT has been discontinued with T levels in mid 400’s and fT running between 3-5 (normal range 6.6-18.3) and extremely high FSH in the 30s (normal range 1.5-12.4) as well as LH in 20s (normal range 1.7-8.6).
I know there are many knowledgeable posters on this site and if anyone has time to read the details below I would be most appreciative of any comments/insights.
• History of hypothyroidism on Levothyroxine 175 ugm.
• Essential hypertension on Losartan 100 mg Q day maintains ~130s/70s
• Remote history of AFib episodes requiring cardioversion (x3) over 18-month period. Well controlled for past four years on propafenone, potassium, and magnesium.
• Prostate cancer s/p RRP Oct 2016. GS 3+4=7; GG 2; Adenocarcinoma, Acinar; pT3a, pN0, pMn/a; ECE extensive; Surgical Margins negative; Tumor quantification 12%; Gland weight 68 gm.; #24 PLND – all negative;
o Surgery complicated by intraabdominal post-op bleeding requiring two units of blood and one-week hospitalization. Constipation continues to this day.
• Many year history of Late Onset Hypogonadism (LOH) symptoms. T gel started 9 months post op due to symptoms. All uPSAs were undetectable (<0.006) for about two years. Resulted in improvement in LOH symptoms while aiming to keep TT and fT in low normal range. However, at low dose Tgel, fT remained very low at around 3 (normal range 6.6-18.1) with TT in the low 400s.
o Marked elevation of FSH and LH now continues off the TRT.
o fT runs around 3 with low normal beginning at 6.6. Recent improvement to 5.2 after stopping Pravastatin (see below).
o First “detectably undetectable” uPSA occurred December 2018 after two months international travel and T gel brand and site application changes of Tgel, and T measured at 970.
o First 9 months of 2019 while on very low dose of T gel, uPSA ‘bounced’ between 0.006 to high of 0.030 (most recent 0.026 April 2020)
o All T discontinued since Sept 2019.
o Three weeks of Dutasteride in October 2019 resulted in precipitous drop of DHT from values of 124 and 46, to 5 coinciding with fall in uPSA from 0.026 to 0.010 but rose again into the 0.020’s after a few months, presumably the 5aRI being cleared during that time. Note that Dutasteride remains in body 4-6 months after being stopped. It has now been 6 months off the 5aRI.
o In an attempt to address osteopenia and low fT, a two-month trial of Avena Sativa and DIM (Diindolylmethane) was tried but discontinued when E2 measured 209!! fT is an antagonist of PTH like hormone so if fT is low it is unchecked and breaks down more bone was the reasoning behind this effort.
o HOWEVER, this was stopped when Estradiol rose from 8 to 209 (follow up test was 179). Subsequent two levels of 37 and 23 since stopping the Avena Sativa and DIM. Two endos are baffled, one opines possible contamination in the supplements.
o Prolactin level is mildly elevated, and this is being investigated.
• Osteopenia with some measurable vertebral improvement after one year of TRT (1 yr. ago.) BMD may be repeated in August. Have begun following urinary DpD (deoxypyridinoline) to assess any response to treatment for the bone loss.
Most recent development is in January 2020 there was onset of deep rectal ‘soreness’/dull ache with perianal, buttocks, post thighs, (bilaterally) paresthesia, burning, tingling, sometimes quite uncomfortable. Constipation has been present since the RRP and PLND but it had worsened the latter part of 2019. The onset of this discomfort seemed to begin around the time I purchased a new vehicle and I first noted these sensations while driving. I thought perhaps it had something to do with that. Have purchased three different seat cushions in attempt to lessen this discomfort, but to no avail. MRI and colorectal surgeon consult did not uncover anything (he said he had never seen anything like this as a result of a car seat). Nerve entrapment (PNE) or pyriformis muscle syndrome are considerations at this time, as is small presacral tumor. I have a history of a schwannoma removed from median nerve in left wrist many years ago.
Pravastatin discontinued Jan 2020 (I had been on it for 12 years) with considerable improvement in what had been thought was due to low T including fatigue, brain fog, muscle wasting and aches, weakness, poor coordination, balance, etc. I feel like a “new person”!
Cholesterol rose from 126 to 211; VLDL 10 to 19; Triglycerides 52 to 94; and HDL fell from 45 to 40.
There has also been mild to modest improvement in TT and fT levels (fT 5.1 which is still below the range of 6.6-18.1). I speculate this may be due to more cholesterol being available for T synthesis. Endo does not think so.
I have been on 600mg Ibuprofen for degenerative arthritis for some time as well as VitD. Might this along with low T and hypothyroid have had a ‘suppressant’ effect on prostate cancer cell growth prior to RRP and even now if there are any PCa cells are present?
It is my understanding any potential imaging studies (such as PSMA scans, etc.) would not be a consideration until PSA reaches at least 0.050 unless other issues surface. If it comes to a decision about that, (very early) SR would then become a possible consideration but at this time it seems it is “steady as she goes” unless a storm appears on the horizon.
In the meanwhile, will continue to address the LOH (low fT, high FSH and LH, osteopenia) butt, rectal and posterior thigh symptoms.
