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41Y/O. Very Low T - 39 Total. I Have a Pituitary Tumor. Seeking Advice


#1

Ugg. Were to start lol. I am a larger guy, always have been. I have usually been around 240lbs and am 5’-11". I started to gain an extreme about of weight in a very short time. Went to my family DR about this concern. He sent me to get some lab work. I do have both Central and Obstructive Sleep Apnea and have high blood pressure.

The results - 01/24/18
Testosterone, Serum - 39 “Normal” (Reference Range: 264-916 ng/dL) per Labcorp Free Testosterone(Direct) - 4.9 “Normal” (Reference Range: 6.8-21.5 pg/mL) per Labcorp

After seeing the test results He prescribed - Testosterone 1% (12.5mg/1.25gm)Pump and refered me to an Endocrinologists. She did a full exam on me then sent me for more detailed bloodwork and also sent me for a MRI scan of my Head.

The Results - 2/19/18 (Never Started T-Gel as per Endo for test results)

Testosterone, Serum 53 Low ng/dL 264 - 916
Free Testosterone(Direct) - 4.9 Reference Range: 6.8-21.5 pg/mL
Basic Metabolic Panel -
Glucose, Serum 95 mg/dL 65 - 99
BUN 14 mg/dL 6 - 24
Creatinine, Serum 1.00 mg/dL 0.76 - 1.27
eGFR If NonAfricn Am 93 >59
eGFR If Africn Am 108 >59
BUN/Creatinine Ratio 14 9 - 20
Sodium, Serum 139 mmol/L 134 - 144
Potassium, Serum 5.1 mmol/L 3.5 - 5.2
Chloride, Serum 100 mmol/L 96 - 106
Carbon Dioxide, Total 24 mmol/L 18 - 29
LH 1.4 Low mIU/mL 1.7 - 8.6
FSH 1.9 mIU/mL 1.5 - 12.4

The MRI showed a 1.6mm Microadenoma and a partial empty sella on my pituitary gland
She said this was very small about the size of a grain of sand, that we would monitor the size each year and then prescribed me - Testosterone 1%(50mg) Gel 30x5gm Pk
I took the gel for 6 months then got more bloodwork and a follow-up with my endo

Results - 7/11/18 6 Month follow-up
Testosterone, Serum 256 Low ng/dL Normal - 264 - 916
Free Testosterone(Direct) 7.4 pg/mL Normal - 6.8 - 21.5
TSH+Free T4
TSH 2.050 uIU/mL Normal - 0.450 - 4.500
T4,Free(Direct) 0.89 ng/dL Normal - 0.82 - 1.77
Thyroid Peroxidase (TPO) Ab 12 IU/mL Normal - 0 - 34

She was happy with the 256 Testosterone LVL and said she wanted it above 300 so prescribed me a diff gel - Androgel 1.62% (40.5mg/2.5gm)Pkts 2 packets a day. I went without Testosterone Gel for about 2 weeks as my insurance was battling my DR saying it was not medically need and they needed a more complete blood work tests below are those results.

Results - 7/25/18 (2 wks without T-Gel)
Testosterone, Serum 30 Low ng/dL (Normal - 264 - 916)
Free Testosterone(Direct) 2.2 Low pg/mL (Normal - 6.8 - 21.5)
CBC With Differential/Platelet
WBC - 9.6 x10E3/uL (Normal - 3.4 - 10.8)
RBC - 4.40 x10E6/uL (Normal - 4.14 - 5.80)
Hemoglobin - 12.5 Low g/dL (Normal - 13.0 - 17.7)
Hematocrit - 38.2 % (Normal - 37.5 - 51.0)
MCV - 87 fL (Normal - 79 - 97)
MCH 28.4 pg (Normal - 26.6 - 33.0)
MCHC - 32.7 g/dL (Normal - 31.5 - 35.7)
RDW - 14.5 % (Normal - 12.3 - 15.4)
Platelets - 297 x10E3/uL (Normal - 150 - 379)
Neutrophils - 58
Lymphs 30
Monocytes 8
Eos 3
Basos 1
Neutrophils (Absolute) 5.6 x10E3/uL (Normal - 1.4 - 7.0)
Lymphs (Absolute) 2.9 x10E3/uL (Normal - 0.7 - 3.1)
Monocytes(Absolute) 0.8 x10E3/uL (Normal - 0.1 - 0.9)
Eos (Absolute) 0.3 x10E3/uL (Normal - 0.0 - 0.4)
Baso (Absolute) 0.1 x10E3/uL (Normal - 0.0 - 0.2)
Immature Granulocytes 0
Immature Grans (Abs) 0.0 x10E3/uL (Normal - 0.0 - 0.1)

IS there anything else I could be doing? This is all new to me


#2

WOW… just… woooooowww, you are literally producing the amount of testosterone the average female would produce, possibly even slightly less. I’m not going to say you have an incompetent doctor however I don’t believe the care you are recieving is NEAR to being adequate. Firstly, an empty sella can easily cause hypopituitarism, meaning many hormones in your pituitary are not being secreted at adequate levels anymore. You DESERVE a FULL thyroid panel (although based on what I saw you are possibly hypothyroid), adrenal function test (if you aren’t producing enough ACTH your cortisol can be low and this can have devastating consequences), serum growth hormone test, serum prolactin test etc. You have shitty glucose tolerance, not as bad as mine but still not good, get insulin sensitivity checked.
For many, MANY people testosterone gel’s don’t work (myself included), for others they may work or may work for some time before the skin somehow builds resistence to absorption of the gel. If the gel doesn’t work for you (which it clearly doesn’t), then I would advise switching to another testosterone preparation, preferably a medium estered testosterone injectable (test E or test C), 1-2x weekly injections are optimal and will vary in frequency and dose based on your SHBG (which for some reason you never got tested).
, metabolism of testosterone and how you feel
The fact your doctor is aiming for a level of 300 is quite amusing to me. Clinically in many medical journals it is stated a TT level of 300-350 or less is adequate for a diagnosis of hypogonadism, and many people will have symptoms at levels far above (SHBG, natural base testosterone levels vs what they dropped too etc), you are being treated based on numbers, not how you feel and you are being brought up to the LOWEST possible area defining “normal” which is in the bottom 2.5 percent of men… I’m not going to tell you what testosterone level for you is “ideal” but it sure as shit isn’t 300ng/dl… I am astounded and sorry that you have recieved such shitty treatment, what country are you in?

MY GOD you are also anaemic! Someone prescribe this man some OXYMETHOLONE (just kidding) but you are probably anaemic due to prolonged hormonal deficiency and back in the day docs prescribed high doses of anabolic steroids to treat anaemia and sometimes still do I believe, specifically for asplastic anaemia or amaemia due to renal failure derp. I bet you feel awful, I hope your situation gets better soon

What you are doing wrong is staying with this doctor who is “happy” with a testosterone level of 256, what a joke
image

Also what the hell is wrong with your insurance company, stating a testosterone level of 39ng/dl doesn’t meet the requirement of “medical neccescity” for treatment… I think I have to create another meme for this it’s so upsetting. image


#3

Unreal24278 i had answered him on PeakTestosterone forums where i am also a Member too,

I told him i am SURPRISED he’s even alive with that Testosterone level it’s a MIRACLE his Cardiovascular system is even functioning. I told him he’s a Walking Zombie due to Fatally Low Levels, and that he needs the BEST TREATMENT possible, i know his pituitary is a problem that needs addressing. but i would go on Enanthate or Cypionate

Injections ASAP with Defy Medical or with Dr John Crisler if this was me?? with those levels. Perfect protocol for him would be 2 shots per Week of 60mg Cypionate Monday Morning & Friday Morning. His Testosterone levels would definitely over few month stabilize then.

HCG is Optional for him, if he wants too preserve some SPERM count & have Children very Soon or if he decides to bring Testicles back to original size.

I am HORRIFIED! they not even give him SHOTS to be begin with! at your levels Gels/creams won’t do a FART of good brother. Heed our advice and get a Specialist TRT expert. DefyMedical in Florida if you’re in that state would look after you all the way brother. All the best from me. Danny


#4

Gel will never get your levels up to therapeutic levels, it does happen but is rare.

Wow, this doctor is inducing a testosterone levels seen in 90+ year old men and calling it success. This has to be a new low, doctors shouldn’t be targeting this range until the year 2240 when labcorp drops the reference range again. [sarcastic]

You ask if there’s anything else you could be doing, run away like the wind away from this doctor! She is seeing Free T barely above the range and calling it a day, just wow! You need to find a specialist, they don’t exist inside insurance networks so you will have to go private.

Endocrinologists are the worst at TRT, most don’t specialize in TRT as you have found out the hard way. I have gone through several endocrinologists who are all clueless. Every member before you has had the exact same experience as you.

You’re looking down the barrel of cardiovascular disease, heart disease at those levels. My insurance covers all of TRT, but what good is it if none of the doctors know what the hell they’re doing? I went private and pay for TRT out of my own pocket. That’s saying something.

Defy Medical offers telemedicine and mails all medicines to your home, your location matters not. It’s $1300-$2000 yearly, about $100-$160 monthly. I’m a patient, they staff experts in the field of TRT, thyroid and anti-aging.

CONCLUSION:
These data showed that a testosterone threshold of 440 ng/dL was associated with increased Framingham 10-year CVD risk in middle-aged and elderly men. Poor sexual performance, decreased morning erection, and loss of libido had an impact on the testosterone threshold for CVD risk. The threshold level was higher in men with sexual dysfunction. Further study is required to evaluate the validity of these testosterone thresholds for CVD risk.


#5

Are even 90 year olds this low on average (256ng/dl)… you don’t think labcorp will actually drop the ref range again do you? It just makes it so much harder for people to get testosterone replacement for legitimate medicinal purposes.


#6

Thanks for all your info. It is hard for me to be active. As i mentioned I was always around 240lbs and 5-11 never a skinny guy but I worked, stayed the same shape etc. I have gained 200lbs in about 2 years so currently 430lbs and am currently not working. I don’t binge eat, I don’t over eat - all normal portions - nothing changed at all in my life except I noticed a steady weight gain and lack of interest in sex with my wife to all together no sex :frowning: and my asking my family dr to test my T was the only reason I found out about my low T and all that followed. I get hot and sweat in stores when everyone else is normal - almost like hot flashes. I have every little energy but I do manage - I just hope I can figure out this T / Pituitary issues or find the proper person who can. I do live in Delaware - there is John Hopkins Pituitary Center over in Maryland - Not sure if I need to seek them out, but I do know I need to take control of the way this T is getting treated, it sucks as it seemed this Endo was real knowledgeable and was going to help a lot
I see a nutritionist and am in the process of getting bariatric surgery (sleeve) its a 6 month process for my insurance to cover it - all is well i have been cleared by my internal med dr, a psychologist, a cardiologist, a Pulmonologist and my sleep apnea Dr as per insurance and my bariatric policy. I do need to lose about 30/40lbs prior to this surgery…


#7

Sorry to hear brother, you’re 430lbs and Testosterone, Serum 30 Low ng/dL (Normal - 264 - 916) that can’t be good for your Heart Man. Definitely if u lost 250 pounds and got Testosterone way up there in 800’s you be feeling Fantastic and Longer Life expetency too! for sure yes.

@KSman


#8

You need a minimum a thyroid panel checking Free T3, Reverse T3 and antibodies. Doctors who only check TSH and Free T4 either have no clue how to do their job or are trying to save insurance companies money by skipping on important tests.

You can measure morning and afternoon body temperatures using a glass thermometer, this will inform you to your thyroid status. Must be 97.8 upon waking and 98.6 by 2pm.


#9

My labs from last week had a T range of 175 - 781 for normal. This is a hospital lab run by Beth Israel Deaconess.


#10

Update -

Started to see an Endo and have since gotten a Vertical Sleeve Gastrectomy and losing weight!

She prescribed me Testosterone Gel - 1.62% 40.5mg

She said put 2 packets on daily… I did so and got retested a few months later…

Testosterone - 257 they have Reference Range: 264-916 ng/dL
Free Testosterone Direct - 6.1 they have Reference Range: 6.8-21.5 pg/mL

She messages - Much Improved! will review lvls at office visit.

I wrote her back and said that its WAY TOO Low! It needs to be up way up 800+ etc and maybe I need to explore other options for T replacement etc

She writes back, approves me to take 4 packets and changes script. Thank god my insurance covers this as its close to like $2500 monthly over $20 a little packet!!

I start the 4 packets daily and retest in a month and the results are -
Testosterone - 842 they have Reference Range: 264-916 ng/dL
Free Testosterone Direct - 22.8 they have Reference Range: 6.8-21.5 pg/mL

She writes back - Your levels are above the upper limit of normal or free testosterone. Reduce to 3 packets per day. Will review at followup in 12.2018

Advise anyone?


#11

There are 2% of people who naturally are above the ranges for testosterone and it seems instead of your doctor going by how you feel is choosing to go by the numbers, very sad and not the correct way to do TRT.

A year ago the ranges were 348-1197 ng/dL, what was normal then is now supraphysiological.

As long as HCT looks good there’s no reason to play to numbers game, your doctor looked at your numbers and without asking how you feel, said much improved. Managed healthcare simply doesn’t have the mentality to effectively do TRT.

There’s so much more to our endocrine systems than a bunch of numbers, where your numbers our this morning is not where they are going to be midday, levels are constantly fluctuating and your doctor is chasing these momentary peaks and valleys.


#12

With those numbers, my endo said they are HULK LIKE Numbers and to reduce to 3 packets… i really dont need to ask but should I find a diff endo or just have my family dr prescribe my t gel and find ?