T Nation

41, Just Diagnosed & Confused


#1
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.


#2

Endo's and Urologists seem to be the worst options for TRT.

Suggest Rock Creek Wellness Center at 5401 College Blvd.
They do not work with any insurance companies and it not cheap.

Did you miss albumin?
Can you add lab ranges to the above? Use [edit] in lower RH corner.

Sorry to hear about the crap you experienced at Menningers.

Energy, the major factors are:
thyroid function
cortisol
vitamin D3 status, do Vit-D25 labs
testosterone and E2 balance

What meds are you on now?
Do you get cold easily?
Outer eyebrows sparse?


#3

Albumin, didn't see it unless that is what they call A1b (that font is hard to read)

Yeah, menningers and the whole let's take a kid and experiment should be criminal

I was taking Linsinopril 7.5mg to stave off some hypertension but I have added additional mag and niacin.
I take as sparingly as possible Lunesta because of insomnia
I take a pretty good regiment of supplements for health (no OTC big box - Xtend-Life.com -)

I don't get cold easily. If I am tired I get that way sometimes but in general not at all.
My eyebrows look "normal" in thickness. I have never had bushy or very thick ones. I would say they are average?

As far as Rock Creek.. I have to stay within Insurance (sorry).. Once upon a time I was affluent and would not have hesitated but, I have to navigate and know what to discuss when I get the 5 mins with the Dr.'s.

My primary is really cool and will more or less allow me to get labs that I want as long as I can provide an explanation, she was the first in my life to test my T and she is awesome for a primary and in general better than I have had most of my life. The Urologist is "okay" but I need to be armed to work with him and reason him to where we need to go and "why" as he is clearly in his 60's and is kinda "sloppy". The endo in Topeka at Cotton O Neil is a mess, he is smart but they run people through there like McD's and the RN gives a flip.. I decided against ever going back. He prescribed Natesto (a recent nasal gel T)...

Thanks for your reply KSman


#4

Sounds like you are very up on your game and that doc sounds like she had good potential.

66047 here

CO2 31 22-33
- you don't need to hold your breath for the needle stick

You stopped TRT to see if you could restart.
In the advice for new guys sticky, I link to a thread on how to do that.

After TRT, LH/FSH were high and T was low. That indicated that you have primary hypogonadism. But was that caused by the TRT without AI or hCG?

Two weeks after TRT, your E2 was high and that was preventing recovery.

Not testing LH/FSH before TRT was really bad.

FT4 1.03 .81-1.61
TSH 1.09 .32-5
TSH looks great.
FT4 should be nearer to mid-range of 1.21, FT$=1.09 is LOW!

Please evaluate your overall thyroid function by checking oral body temperatures:
- when you first wake up, should be 97.7-97.8, higher is OK, 97.3 is a problem
- also check for 98.6 mid-afternoon


#5

66753 here.. No where.. haha.

on CO2, I do not care about needles. I am very calm and am not bothered in the least.

I did not stop to see if I could restart. The Dr's made me do it for a base. I had no idea what I was doing.

I cannot get AI or hCG, they will not discuss the issue with me. I have a new appointment with Urologist in Nov 3rd and I need to be ready to plead my case. I first came to him based on the understanding I had issues with T. He gave me script and now I have to beg to do something else? how and what I am hoping for guidance.

LH/FSH before.. Yeah, that is after I started in reading Tnation and discovered issues and am now scared about what the hell I just did to myself. I just checked my temp and I am 98.2 at 6PM.

I will check in AM. I am really hoping you can help me through this or did I just screw my body all to hell?


#6

I just took the patch off now, was on it for the last three weeks... I have only supplements to work with, how can I straighten out my issue or am I stuck on T? I read the stickies.... I am really concerned now...

I just read your post... Oh My Goodness! "There is no fix for age related secondary hypogonadism and with primary hypogonadism, there is nothing to restart! "

Damn it!!!! There is no way any Dr's going to listen to me on hCG and Novadex... I will try like hell and plead but according to what you wrote, once I am on TRT and I have primary hypogonadism than there is nothing to restart because it is a young man's game...

I have supplemented with iodine for a long time. Nascent Iodine. Has helped me with painful lymphs. I did not notice any change in "hypo-gonadism" related symptoms of brain-fog, libido, energy, sleep.


#7

Need temps when you wake up too.


#8

Temps... That was interesting to watch.

I explained my insomnia, so as I awakened all throughout the night I took my temps.

11PM - 97.2
1AM - 97.1
3AM - 97.2
4AM - 97.4
8AM - 97.7

Now, that was strange to do but I found that the lower my temps the worse I felt as in being tired. Except when I awake I have no control over it and I am WIDE AWAKE and ready to climb out of bed. But, I have learned to play natural white noise (waterfalls, etc.) by my bed and stay away from Lunesta and Ambien (Ambien I will never take again as I did strange things and never knew)... I will close my mind and think nothing and eventually I will fall again to sleep. I have to fight for it! But, it is rewarding when I get sleep because I feel great. I generally goto bed at 8PM and wake 5AM (fixing for work).

Pre-TRT and for the last 7 yrs I would wake and feel okay for 1hr and then know I need to take a nap, sleep for 20 mins and then I would go good till 12-1PM and then "crash" and then sleep for 20 mins (approx) and then go good then "crash" at 4PM and nap.. Day in and day out ...

For years before prescription sleep aids I got upto 25mg of melatonin and would put me to sleep for 2hrs and then I am up... I have tried everything!!!.. Then I went to alcohol (about a pt or equivalent) and had to drink a good amount before I was tired and that seemed to put me under till 4-5AM but felt like CRAP.. So, I stopped that.

When I got on TRT, sleep was better, morning wood came again, I was energized; just everything felt great again.

Anxious to see what you have to say... Thanks.


#9

Really need TSH, fT3 and fT4 for a better picture.

When you wake up in the AM, that is normally controlled by dropping melatonin levels. When you take non-time-release melatonin its short half-life means that melatonin levels drop and that wakes you up. You must get a time-release product!

Trazodone does not seem to drag over and make one tired the next day.

Have you read the thyroid basics sticky?


#10

I have TSH and T4 above. I will try and obtain T3 but I have doubt I can get it. I will ask primary again for TSH, T4, T3 to get a better picture.

I do not take any sleeping meds. Only every once and a while when I am completely desperate. I only take Lunesta.

I have read Thyroid basics. I am supplementing that reading with other sources to understand more fully (It is a bit of a large picture to sort out).

I believe I have Hypothyroidism due to chronic low temps. I also believe that I have hypogonadism (could be either primary or secondary {hard to know for sure now since I was on TRT prior to LH/FSH testing}). The Endo stated that he was confidant it was primary since LH would not be so high if there was an issue with pitutary.

With such a complicated mess of a medical history and trauma this case is a bit much I know. I have fought for a decade with Dr.'s to get anywhere and always the same denial of your "normal" in labs, no issues, etc. I have now become a staunch advocate of my own health but, that in it's self will get you nowhere as well because I am the patient and not an ND, DO or MD.

I believe that the symptoms I have are all in line with the various forms of Thyroid Disfunction (Wilsons, Hashimoto, etc.) and those symptoms are all indicated above in thread. Those symptoms have been "masked" over by Linsinopril (hypertension), Tried to get me on statin's (Triglycerides, HDL above high), Tried to get me on Anti-Depressents {But I refuse any mental drug due to past}(Anxiety and Drepression, etc.), (Time Release and Non-Time Release) sleep hypnotics {Ambien, Ambien CR, Lunesta, etc.} (insomnia, chronic fatigue, etc.), Viagra and Cialis (E.D., Low Drive, No Drive, etc.)... My RBC, Hemoglobin and Hemotocrit are at highest end and waiting for some one to tell me to use Phlebotomy to lower.... All of these are in line with Hypothyroidism Dysfunction or Disease.

I believe that the only way I will find out what is going on is to locate a integrated medicine Dr. somewhere in the nation that will help me that is not expensive; I know there are some and I will have to start Monday AM and just keep at it till I find one. One that is NOT an ENDO, Urologist, etc... I have located a few on the net on east coast. One that will order Hs-TSH, fT4, fT3, rT3, TPO Abs, Tg Abs and Check f-T3:rT3 Ratio and TotalT3:rT3 Ratio. One that will take a look as well into my Testes, Pituitary and Hypothalamus Axis in conjunction with Pituitary Thyroid Axis and see how the interplay and synergies (or lack thereof) are.

I am grateful for your Tnation and all the wonderful, knowledgable people here and for KSman too!
I am grateful for STTM crowds and all the other communities that have aided in my journey thus far.

I will check on this thread and welcome any input and will update as my case moves forward where ever it takes me and I sincerely hope that this thread will help others as so many other threads have helped.