Hey everybody! I’ll start this with the new member stuff, and then tell a short story and dig into some details…
age: 29
height: 6’0
waist: 31
weight: 165
describe body and facial hair: medium levels of facial hair, very little chest hair
-describe where you carry fat and how changed: Historically very low body fat, recently started gaining on breasts and buttocks.
-Rx and OTC drugs: Took a multi with saw palmetto for 6 months (more later)
-describe diet: Always eaten a normal to healthy diet, recently stopped eating carbs for breakfast/lunch.
-describe training: former competitive short-distance runner, now 10 miles/week and 3 days/week lifting.
-testes ache, ever, with a fever? nope
-how have morning wood and nocturnal erections changed: Previously had semi-regular morning wood, now never (occasional nocturnal)
Story:
For years I suspected I had a mild thyroid issue. I routinely suffered from fatigue, difficultly staying warm, and my TSH was always between 3.5 and 5 at two physicals (in 2008 and 2010). Additionally, Every living member of my mom’s side of the family has some thyroid problems. I was told nothing was wrong with my thyroid because my TSH was not high enough.
Three years ago I started to develop mild ED and noticed a change in libido, but did nothing about it. The most noticeable symptom was a reduction in sensitivity–orgasms became more difficult to achieve (I didn’t mind that this seemed to solve another common issue…). Oddly, I also noticed a ‘hypersensitivity’ in the region which made some clothing uncomfortable. I was also out of shape for the first time in my life.
Approximately two years ago I had a sudden onset of a plurality of symptoms:
–severe brain fog/extremely difficult concentrating
–sensitivity to bright lights
–vision issues (felt like uncomfortable outdoors, trouble driving at night)
–difficult with speech (couldn’t talk fast, or softly)
–short term memory problems
–anxiety
–intolerance for alcohol (one drink and I was about drunk).
–severe, localized headaches that came and went
–swings between feeling too hot (sweating in a cold room) and too cold (freezing under 3 blankets).
–muscle spasms
I went to the doctor (see 2012 labs), but no cause found. I suspected my thyroid, but my TSH was 1.5 in the afternoon. Brain MRI/EEG/neurologist were inconclusive. Symptoms slowly improved over 2-3 months, but never fully (only the headaches and anxiety fully resolved). No sexual symptoms that I recall, but still suffered from ED, difficult orgasms, and hyper sensitivity.
One year ago the sexual symptoms got noticeably worse over the course of a few weeks. Mostly a noticeable reduction in penile sensitivity (and no more hypersensitivity), but also noticed a reduction in rectal sensation. This was scary, make no mistake. I had pulled my lower back 2 weeks prior and was also dealing with some coccyx pain. I was concerned about a connection, went to the ER, lower spine MRI showed bulged L5S1 disc (hence the back pain), but absolutely not enough to cause the ‘numbness.’ I went to my doctor for a physical (2013 labs #1) and asked to ‘test t3 and t4.’ Over the next 6 months the symptoms slowly worsened. Intercourse became impossible due to insufficient sensation. I also had transient prostate pain, testicular pain (testicular ultrasound revealed no problems except some low bloodflow), and reduced testicle size. Urologist send me to a neurologist. Neurologist did EMG which was negative for nerve problems. He also tested some hormones (2013 labs #2), but nothing seemed off.
Finally, in an exhaustive effort to figure out what was going on, I realized that I noticed my ‘symptoms’ worsened over the summer after I changed multivitamins to one which included saw palmetto extract. I then found that this can cause similar problems in some men. It wasn’t the cause, I don’t think, since the symptoms had noticeable worsened a few months prior, but I immediately stopped taking the multi (November '13) and noticed some improvements for the first time, ever. Additionally, I had started to gain some fat around my pecks and midsection, which was very odd for me because I have almost just about no fat anywhere else. In fact, it was After taking it that I started to develop problems sleeping (insomnia and waking up multiple times) and tinnitus. The improvements did not last, and since then I’ve had only a slow worsening of the sexual symptoms. Also, oddly, I used to be able to take melatonin to help me sleep, but I absolutely cannot touch the stuff now if I want to stay asleep for more than 30 minutes.
I immediately sought out an endocrinologist who did a series of labs (2014 labs) and then dismissed me saying ‘there’s nothing wrong, it sounds neurological or maybe it’s in your head.’ I was upset, but I don’t think I gave him a complete enough understanding of the problems. Before I go running to a new doctor, I’m wondering if there is a specific direction that I should be looking in.
The only other data points I have: First, as an experiment, I tried taking 25mg DHEA each morning to see if anything changed in response that might indicate this was related to my hormones. On day 2 I had noticeable improvements in the ability to have an erection, but on day 4 that was gone the ‘numbness’ had noticeable worsened. I stopped taking it immediately. And, finally, I notice some transient (12-24h) worsening of symptoms after exercise.
[2010 labs - morning]
TSH 3.91 uIU/ml (0.34-5.60)
Cholesterol 142 mg/dl(<200)
HDL 47 mg/dl (>47)
LDL 83 mg/dl (no range)
Triglycerides 62 mg/dl (<150)
and a lot of stuff that looks normal
[2012 labs - afternoon]
TSH 1.43 (0.4-4.50 uIU/ml)
[2013 labs #1 - afternoon]
TSH 3.46 (0.4-4.50 uIU/ml)
T3, total 73 ng/dL (76-181)
T4, total 7.5 mcg/dL (4.5-12.0)
AST 113 U/L (10-40)
[2013 labs #2 - morning]
Cortisol 9.5 ug/dL (no range)
Testosterone 657 ng/dL (300-1000)
Prolactin 5.2 ng/mL(3.0-14.7)
[2014 labs-morning]
Vitamin D 27 (30-100 ng/mL)
TSH 2.6 (0.4-4.5 mIU/L)
Thyroid peroxidase antibodies <10 IU/mL (<35)
Estradiol Ultrasensitive 26 pg/ml (<29)
SHBG 39 nmol/L (10-50)
Albumin 4.4 g/dL (3.6-5.1)
Testosterone 545 ng/dL (250-1100)
T, bioavailable 131 ng/dL (110-575)
T, free 65.1 pg/mL (46.0-224.0)
DHT 48 ng/dL (16-79)
DHT, free 4.82 pg/mL (1.00-6.2)
FSH 4.4 mIU/mL (1.6-8.0)
LH 4.2 mIU/mL (1.5-9.3)
Prolactin 4.5 ng/mL (2.0-18.0)
Hematocrit 41.6% (38.5-50.0)
I also did a followup testosterone test a week later:
SHBG 42 nmol/L (10-50)
Albumin 4.5 g/dL (3.6-5.1)
Testosterone 535 ng/dL (250-1100)
T, bioavailable 121.9 ng/dL (110-575)
T, free 59.3 pg/mL (46.0-224.0)
So, the truth is, I don’t know what to do next. My symptoms seem to be very slowly getting worse, though my sleep quality and tinnitus have improved somewhat over the last few months. I’ve routinely measured by body temperature as low as 96.6 (and never above 97.8 in the afternoon) which I cannot imagine is OK, but I have no idea if these sexual issues are even related, nor how I could figure that out. As an aside, I have started to take iodine/magnesium/selenium/vitamin C and 5000IU of Vit. D daily to see if it improves anything, but it’s only been a week.
My free testosterone seems too low for someone of my age, but why would it be? The endocrinologist I saw completely ignored those number as inaccurate. Moreover, could a borderline low level really cause physical symptoms of this severity? I feel there must be more going on, but I want to learn more before I see another endo.
Any thoughts that this community might have will be GREATLY appreciated. And please let me know if anything in this post needs to be changed or added and I will do so!