Klinefelter's Syndrome help with TRT

[Camp_anawana]

So I have KS and i find that most of the information here doesn't help me because I have primary hypogonadism, but there is no resources online for correct dosing and protocols for TRT for people with Klinefelter's. So, I want to start one here.

Currently, I am on 1mg Anastrozole a week and taking .35mg of Test Cyp twice a week to start with my new endocrinologist. I have been taking Test Cyp for the past 5 years with many different doctors and my levels were always wrong and they had no idea how to adjust. I'm about to give up and say screw insurance and try defymedical even though I'm super skeptical of it.

Here is my most recent bloodwork:

ALBUMIN 4.3 g/dL 3.3-4.8 ALKALINE PHOSPHATASE 40 IU/L 25-160 Details ALT 29 IU/L 15-63 Details ANION GAP 11.0 4.0-12.0 Details AST 26 IU/L 15-41 Details CALCIUM 9.5 mg/dL 8.6-10.3 Details CHLORIDE 100 mMol/L 98-108 Details CO2 27 mmol/L 25-33 Details CREATININE 0.93 mg/dL 0.6-1.3 Details EGFR CALCULATED >60 mL/mn/1.73 15->90 Details ETHANOL,BLOOD <10 mg/dL Details GGTP 48 U/L 7-50 Details GLUCOSE 143 High mg/dL 70-110 Details MAGNESIUM,Bld 1.9 mg/dL 1.6-2.5 Details POTASSIUM 4.0 mmol/L 3.3-5.1 Details PROTEIN,TOTAL 7.6 g/dL 6.5-8.2 Details SODIUM 138 mmol/L 135-145 Details TOTAL BILIRUBIN 1.1 mg/dL 0.3-1.2 Details UREA NITROGEN 9 mg/dL 6-24 Details TESTOSTERONE 0.47 Low ng/mL 2-7.5 Details FSH 17.1 mIU/mL 1-19 Details GLUCOSE 177 High mg/dL 70-110 Details LH 9.5 High mIU/mL 1-9 Details POTASSIUM 4.6 mmol/L 3.3-5.1 Details PROLACTIN 5.1 ng/mL 2.6-13 Details PROTEIN,TOTAL 7.2 g/dL 6.5-8.2 Details SODIUM 135 mmol/L 135-145 Details TESTOSTERONE 0.36 Low ng/mL 2-7.5 Details TOTAL BILIRUBIN 0.7 mg/dL 0.3-1.2 Details TSH 1.48 uIU/mL 0.40-4.80 Details Terrible I know. I want to start a recommended dosing for people with KS, because apparently we need more and we convert T much faster than most. Thanks.

2-7.5

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[CoastWatcher]

Welcome to Excelmale - I'm sorry you have to deal with this issue. Your sceptical of Defy Medical. I'm not a patient, I've no vested interest in their practice, but know the work they do and how many members here at EM have been helped by them. Plug "Justin Saya", the medical director of Defy, into the search function. Read his posts, you'll discover that the reservations you have are misplaced. Your need to find a doctor you have full faith in is a critical issue at this point. You could do no better.

 

[johndoesmith]

So I have KS and i find that most of the information here doesn't help me because I have primary hypogonadism, but there is no resources online for correct dosing and protocols for TRT for people with Klinefelter's. So, I want to start one here.

Currently, I am on 1mg Anastrozole a week and taking .35mg of Test Cyp twice a week to start with my new endocrinologist. I have been taking Test Cyp for the past 5 years with many different doctors and my levels were always wrong and they had no idea how to adjust. I'm about to give up and say screw insurance and try defymedical even though I'm super skeptical of it.

Here is my most recent bloodwork:


[TABLE="width: 100%"]
[TR="class: ui-widget-content ui-datatable-even"]
[TD][/TD]
[TD][/TD]
[TD]ALBUMIN 4.3 g/dL 3.3-4.8
ALKALINE PHOSPHATASE 40 IU/L 25-160 Details
ALT 29 IU/L 15-63 Details
ANION GAP 11.0 4.0-12.0 Details
AST 26 IU/L 15-41 Details
CALCIUM 9.5 mg/dL 8.6-10.3 Details
CHLORIDE 100 mMol/L 98-108 Details
CO2 27 mmol/L 25-33 Details
CREATININE 0.93 mg/dL 0.6-1.3 Details
EGFR CALCULATED >60 mL/mn/1.73 15->90 Details
ETHANOL,BLOOD <10 mg/dL Details
GGTP 48 U/L 7-50 Details
GLUCOSE 143 High mg/dL 70-110 Details
MAGNESIUM,Bld 1.9 mg/dL 1.6-2.5 Details
POTASSIUM 4.0 mmol/L 3.3-5.1 Details
PROTEIN,TOTAL 7.6 g/dL 6.5-8.2 Details
SODIUM 138 mmol/L 135-145 Details
TOTAL BILIRUBIN 1.1 mg/dL 0.3-1.2 Details
UREA NITROGEN 9 mg/dL 6-24 Details
TESTOSTERONE 0.47 Low ng/mL 2-7.5 Details
FSH 17.1 mIU/mL 1-19 Details
GLUCOSE 177 High mg/dL 70-110 Details
LH 9.5 High mIU/mL 1-9 Details
POTASSIUM 4.6 mmol/L 3.3-5.1 Details
PROLACTIN 5.1 ng/mL 2.6-13 Details
PROTEIN,TOTAL 7.2 g/dL 6.5-8.2 Details
SODIUM 135 mmol/L 135-145 Details
TESTOSTERONE 0.36 Low ng/mL 2-7.5 Details
TOTAL BILIRUBIN 0.7 mg/dL 0.3-1.2 Details
TSH 1.48 uIU/mL 0.40-4.80 Details

Terrible I know.
I want to start a recommended dosing for people with KS, because apparently we need more and we convert T much faster than most. Thanks.


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[TD]2-7.5[/TD]
[TD]Details[/TD]
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[/TABLE]

Couple of questions:

1. You're on .35 mg a twice a week? Do you mean .35ml of 200mg/ml so 70mg testosterone cyp twice a week?
2. You have two testosterone tests in your blood work, are these from different times?
3. You have no E2 test, but are taking AI?
4. .36 ng/ml is 36 ng/dl, that is LOW. I just can't believe that.
5. No SHBG testing?
6. When was this test taken relative to injection?

You need defy medical. I am a patient of theirs, also primary but not klinefelters, and they are great. I understand the reservations about telemedicine, but give it a try. Think about it this way, your current care certainly isn't doing you any good, I think you need to try something new.

 

[Camp_anawana]

Yeah, it is .36ng/mL. E2, couldn't find it, but it was high while my T was that low.
Yes, im on .35 T twice a week of test cyp 200mg/ml and on an ai because previous blood tests showed that my e2 would shoot up after an injection and explain why I felt like shit with no improvement after the injection.

 

[johndoesmith]

Yeah, it is .36ng/mL. E2, couldn't find it, but it was high while my T was that low.
Yes, im on .35 T twice a week of test cyp 200mg/ml and on an ai because previous blood tests showed that my e2 would shoot up after an injection and explain why I felt like shit with no improvement after the injection.

Yeah, can you post those E2 tests you're talking about?
When were these tests taken relative to injection?

I highly doubt E2 is high with where your total test is.

I also can't understand how you're injecting 70mg E3.5D and only getting a total testosterone of 35ng/dl. Is it pharmaceutical grade? I assume it is.

You'd need more tests to see why this is, SHBG, DHT, and sensitive E2 at the minimum.

 

[Vettester Chris]

Yeah, something is amiss with your serum results, based on your injection amount? As noted above, do you have quality medication? I know shelf life starts to play into it also, for me at/around 9 months, all depending on storage, temp, keep out of light, etc.

 

[Camp_anawana]

Labs were done before starting on T. They put me on clomid for a year before and these were my levels. I just started T again after being diagnosed with klinefelters. My 1st lab after starting on T will be in about 3 weeks. The labs above are my baseline without TRT.

 

[Camp_anawana]

I can't find specifically what tests were done. The VA doesn't sort stuff out like that. The labs above were a collection of different things I found within the same month. Hard to find out using their system.

 

[Nelson Vergel]

Understanding the klinefelter syndrome

www.excelmale.com

 

[XXY47]

Yeah, it is .36ng/mL. E2, couldn't find it, but it was high while my T was that low.
Yes, im on .35 T twice a week of test cyp 200mg/ml and on an ai because previous blood tests showed that my e2 would shoot up after an injection and explain why I felt like shit with no improvement after the injection.

Funny,I feel the complete opposite after an injection. Takes about 20 minutes and I feel clear, my mind clears and I can hold a conversation. I can think faster and have much better attention to detail. But it doesn't last if I am injecting the dosages which are the norm, this focus drops off and so does not ability to sleep. When I was injecting in what the medical community has as normal within a day and a half the fog creeps back in and I can't think anymore and my attention to detail fades until I can't remember what I am doing from hour to hour. I have had issues with not having concentration and forget things driving.

To coin it in terms of a computer, the injection is like over clocking a processor. But over time with wear, heat and dust that over clocked computer fades and had more errors. Until the next injection day for me and boom over clocked again.

When the dosage got up to 0.8ml I never felt a drop off it would last until the day of my next injection. I inject on monday and thursday during a one week cycle. I'm not sure what I will do now, seem my Endo is dropping the dosage because my test is really high. If I get back to clearity for 2 days and fog for 1 day this isn't going to work. I will lose my job or for that matter any job in my profession.

 

[greg smith]

I found out 15 years ago I had KS. I've been on testosterone therapy ever since. It started out 1/2 cc every two weeks. but my levels up and down. So doctor put me on 1/4 cc weekly 200mg. Several weeks ago I found out I have prostate cancer, so my doctor took me off my testosterone, not knowing alot about KS. I got a second opinion because first doctor would not put me back on testosterone. The second doctor knew about KS and put me back on Testosterone but is closely monitoring my levels and my cancer. Hopefully the cancer doesn't grow with the testosterone. It's a small tumor in my Transition gland(which is rare but so is KS) Not doing any treatment on the cancer for now.