Height: 6’ 1.5’’
Waist: 32 in
Weight: 167 lb
Body & facial hair: Hair in armpits, on legs, parts of chest, sparse facial hair, normal pubic hair
Fat distribution: Mainly on buttocks and waist (love handles despite low body weight)
Health conditions: Low testosterone since 2004 (age 19), no other diagnosed conditions.
No drug use
Training: Bicycling and weight lifting
Diet: about 2800 kcal, adquate fat and protein intake
Training: Weight training 3 times a week, 1 hour per session. Cycling 3 times a week, 1 hour per session.
Testes ache: Never
Morning/nocturnal erections: Sometimes in the morning, never in the evening
I started getting chubby when I was about 12 years old. Was continously told it would “take care of itself” but at 16, I decided to do something about it. Started cycling, running, lifting weights etc and made some progress but remained a bit husky (about 180 lb) until I started counting calories at 18, which is when I finally started to lose some fat weight. I went from 180 lb to 155 lb in about six months and I went to see the doctor when I realized I looked anorexic, had no energy or sex drive and was constantly freezing. Total T levels were checked (daytime) and were 3.1 nmol/L (range >10 nmol/L). Did another test (in the morning) six weeks later for verification and it was 6.5 nmol/L (range >10 nmol/L).
So, I went to see an endo who measured LH, FSH which were apparently not elevated (don’t have the lab results). MRI apparently showed no tumours or other anomalies. Insulin-induced hypoglycemia showed normal release of GH and Cortisol. Endo didn’t want to investigate further but I was offered T patches but declined as I began doing some research myself, eventually realizing that insufficient calorie and fat intake combined with exercise affect T-levels negatively. I started eating a lot more, gained quite a bit of weight and ballooned up to 190 lb in a couple of months. Went for a re-check two months later and T levels were apparently normal (don’t have the results but I suspect they were, at best, right on the limit i.e not normal for a 19 year old). However, the doctor gave me a clean bill of heatlh and I was convinced that in time, I’d be able to solve the problem myself simply by adjusting diet and exercise.
For about six years I still had the same symptoms as before (low energy, sex drive, cold intolerance) just not as severe and in August 2010, I finally went to the doctor had some blood drawn with the following values:
TSH: 1.34 mIE/L (0.3-4.0)
Total T: 11.5 nmol/L (9.9-27.8)
After being involved in the most bizarre situation for months where I wasn’t able to convice my doctor that T was low, I went to a different one and again had tests done:
SHBG: 47 nmol/L (13-71)
Total T: 11 nmol/L (10-35)
Bioactive T: 3.9 nmol/L (2.8-21.7)
I managed to convince this doctor that I needed to see an endo. Again, blood was drawn in preparation for the endo appointment:
B-Leucocytes/WBC: 3.4x10^9/L (3.5-8.8)
B-Erytrocytes/RBC: 4.6x10^12/L (4.2-5.7)
B-Hemoglobin: 140 g/L (134-170)
B-EVF: 0.43 (0.39-0.5)
MCV: 94 fL (82-98)
MCH: 31 pg (27-33)
MCHC: 327 g/L (317-357)
B-Trombocytes: 162x10^9/L (145-348)
TSH: 1.3 mE/L (0.4-3.5)
fT4: 9 pmol/L (8-14)
fT3: 3.5 pmol/L (3.5-5.4)
Total T: 7.3 nmol/L (10-30)
FSH: 3.8 E/L (1.0-12.5)
LH: 2.2 E/L (1.2-9.6)
Prolactin: 6.8 micro g/L (3-13)
IGF-1: 191 mikro g/L (150-390)
According to the endo, everything was fine - he even thought the Total T was fine - despite being incredible low for a 25 year old, combined with high SHBG and my symptoms:
- Low energy, sex drive, no facial hair, childish face, dry skin, cold intolerance, eunochoid body shape
I went looking for a different doctor and I have now finally found a helpful GP who might be able to help me. Tests done in March this year show the following:
TSH: 1.4 mU/L (0.2-4.0)
fT4: 14 pmol/L (10-22)
fT3: 4 pmol/L (3.3-6.0)
TPO: <10 kIU/L (<35)
HbAlc: 32 mmol/mol (27-42)
Estradiol: 57 pmol/L (no ref range printed on lab sheet)
Prolactin: 6.5 micro g/L (2.0-12)
Bioactive T: 4.3 nmol/L (2.8-21.7)
Total T: 13 nmol/L (10-35)
FSH: 5.5 IE/L (1.4-18)
LH: 1.9 IE/L (1.5-9.3)
IGF-1: 184 mikro Ag/L (117-329)
Even though my GP is very friendly and open-minded, I don’t really feel she has the knowledge to fully sort this out, which is why I am posting here. I’d really appreciate if anyone has the time to analyze the blood tests, maybe give some advice on how to proceed (any further tests necessary?) and answer a few questions.
- From what I can see, the most obvious anomalies are the Total T (low), SHBG (too high in relation to Total T) and Free T (low). Is this correct?
- The symptoms I have - poor muscle development, youthful face, sparse facial hair, low energy, low sex drive, cold intolerance - would indicate both testosterone and hypothyroidism but thyroid values levels seem ok, right?
- Is it possible that I have both primary AND secondary hypogonadism? I have this horrible feeling I might have Klinefelter’s even thought I DON’T have the two cardinal symptoms (small testicles and elevated LH+FSH). However, I do have a eunochoid body type (long arms, long legs, short trunk, female hips, female waist) and from looking at pictures of typical Klinefelter patients, my body type is strikingly similar.
- Maybe Androgen Insensitivity Syndrome?
EDIT: I should add that I live in Sweden.