I have read a LOT of information on this forum and have found more here than anywhere and am thankful for the opportunity to learn so much about my symptoms and make sense than to wait for any Dr. over the years to give a rats two cents and help me.
I came here probably like everyone else, searching on symptoms and running into Low T.
For about the last 7 years I have steadily felt worse and worse to the point that staying awake was a struggle and would have to take a nap to function again. Libido went to the toilet, felt worse getting up than going to bed often, my body hair slowed way down and didn't need to shave but every other day at the soonest, my prostate began to feel like a grape fruit and frequent trips to the bathroom at night. I was tired of being tired.
Before we get any further I was as a child put on many drugs by Menningers in Topeka, ks and had been doped up for most of my childhood that led to many suicides in grade school and then as a teen in 91 I did the "biggy" and was on life support for almost a week. I had been on every conceivable drug any one of the many psychiatrists prescribed.
Ever since that O.D. in 91' I have never had another sleep with dreams, I have always had concentration issues, etc. So, those drugs messed my brain up something bad. I have had a sleep study performed and I have:
N1: 40.5
N2: 51.4
N3: 0
REM: 8.1
Sleep Latency: 7minutes
wake after sleep onset: 57 minutes
REM latency: 95 Minutes
Time in bed 367 minutes
Sleep Efficiency: 50.3%
EEG:
Arousals: 116 Awakenings: 22
Arousal Index: 44.8-hr
To this very day I have pursued Dr.'s about all my ongoing symptoms and was always told once they ran my labs and did a physical that I was just fine and go on.
I had an evening with my wife of 22yrs that woke me the heck up and caused me to look further was when we were actively intimate my erection was gone from beneath me. I was utterly blown away and then decided to go to my primary yet again and she put me on Cialis and Viagra. I did that for one month and they worked (for a short period of 2 weeks) and then they did not help me at all. I fired yet another Dr. and moved on to a new one and she said that she wanted to test my T. I was surprised that she took interest and was not just saying "your fine." My T came back low. I was grateful to her giving a crap enough to test and than I began coming here about March and reading and reading and leading my Dr.'s as best as I could.
My primary prescribed TRT only until I could get to a urologist or endo as she was not comfortable with managing my TRT. I made an appointment with endo at KU MED and she was just not hearing anything about low T and had me layoff T for two weeks and ran labs and came back and said I was perfectly in normal range (this is a freaking professor at KU). I was not happy (started back on my TRT while waiting) and pursued an endo in Topeka, he had me cease TRT (I had only been back on for 2 weeks) and wait for a month and wanted to run labs again and see where I was. He came back and said I had primary hypogonadism and prescribed TRT for me and I asked about aromatase inhibitor and he said NO!. I then had another appointment with another urologist and he prescribed TRT after exam and digital, etc. and I asked him about aromatase inhibitor and he said NO!.
I have complete everything in labs both from Qwest and Labcorp and my E2 is 32 on the one test I could talk her into at KU. The others will not test E2. My issue here is that I need help understanding how or where I can go to find these magical creatures called Dr.'s that actually understand even a little of what you guys are masters of (i.e. KSMAN - wow!!!).
I am going to break my labs down below and provide as much as I can and am so appreciative for your help and am eager to get solved. I am looking for general advice. I am desperately trying to find that one Dr. that will help me and not just brush me aside.
I do not want to just do TRT, I don't want my testes to just say goodbye, I just need help .
Age: 41
Weight: 225
Height: 5’10"
Waist: 36
Diet: fish, beef, poultry, vegetables, EVDO and limited starches (potatoes, corn, etc) we do 99% scratch cooking and medium consumption of whole grain flour (bread, etc.)
Drink a glass or two of wine a week, drink coffee off and on over a month, NO! soda, juices, etc.
Symptoms:
Testes Ache just for no reason (sensitive when my wife manipulates)
Almost non-existent libido
- extreme fatigue and if I am trying to listen to someone, sometimes I can’t keep my eyes open (I have to get up and walk around or stand to stay awake)
- very little hair growth, my body still has hair (chest, arms, etc.) but growth is almost non existent (I do have male pattern baldness), I have lost hair on my lower legs to mid-upper calf.
- difficulty in concentration
- sleep is crap
depressed, anxious
no morning wood
almost none existent semen (probably due to low T)
=====MARCH===== PRE-TRT = Labcorp==
HH
HGB 17 14-17
HCT 49 4.2-52
Insulin 9.2 2.1-19.60
Comp. Metabolic Panel:
NA 144 134-148
K 4.3 3.5-5.3
C1 107 95-114
CO2 31 22-33
Anion Gap 10 6-14
Glucose 100 70-110
BUN 13 5-25
Creat .95 0.5-1.5
CA 10.4 8.3-10.4
Globulin 2.8 2.3-3.5
ALP 53 35-130
AST 25 2-40
ALT 34 6-45
TBil .7 .2-1.2
TP 7.3 6-8.3
A1b 4.5 3.6-5.1
Osmo 297 280-295
Chemistry
eGFR 87 >59
Lipid Panel
Chol 236 100-240
Trig 200 35-160
HDL 44 30-85
LDL-Calculated 152 0-100
VLDL 40 0-42
C/HDL 5.4 3.7-6.7
FreeT4
FT4 1.03 .81-1.61
Thyroid Stimulating Hormone
TSH 1.09 .32-5
Urinalysis was basically negative and clear etc.
Cortisol AM 16.9 6.2-19.4
Testosterone 282 (Labcorp)
FreeT 5.6 348-1197
PSA 0.7 0-4.0
==June ==== was on TRT for 6 weeks = Then KU Dr ordered cease 2 weeks then test======
Testosterone: 503.57 (different range than before 47.01-980.56 - local lab)
Estradiol 32.8 (Range 7.6 - 42.6) I think Labcorp
Prolactin 9.7 Labcorp
LH 3.8 labcorp 4.0-15.2
FSH 3.7 labcorp 1.7-8.6
SHBG 27.7 (range 16.5-55.9) labcorp
== September === three weeks no TRT = Pre visit to Topeka ENDO
ALL QWEST
FSH 4.5 1.6-8.0
LH 5.2 1.5-9.3
TT 325 250-1100
FT 59.7 46.0-224.0
==September === four weeks no TRT = Visit to Topeka ENDO
Labcorp
LH 9.3 1.7-8.6
FSH 5.0 1.5-12.4
TT 307 348-1197
FT 8.8 6.8-21.5
Lastnight I had blood drawn for local Urologist in Pittsburg, KS for Hematocrit and Hemoglobin and RBC all were fine but still on the high end. They did pull TT and FT and I had sent to Labcorp since their ref ranges are in line with my age.
I am so freaking lost in this and overwhelmed… Guidance and advice welcomed because no darn Dr. gives a crap enough as it is not their gonads and life on the line here.