Tests to Request From Your Doctor
Standard XXY care monitors testosterone. Your actual risk profile is broader.
This page covers what to request, why it matters, and how to ask for it.
The Baseline Panel
Request all of these together. Frame it as: "I'd like a comprehensive baseline for my XXY risk profile."
Metabolic
| Test | Why | Target Range |
|---|---|---|
| HbA1c | Long-term glucose control; diabetes risk 6x elevated | <5.7% |
| Fasting insulin | Insulin resistance detection; catches problems before glucose goes abnormal | <10 μIU/mL ideal |
| Lipid panel | Cardiovascular risk; metabolic syndrome component | LDL <100, HDL >40, TG <150 |
| hsCRP | Inflammation marker; cardiovascular risk | <1.0 mg/L ideal, <3.0 acceptable |
Script:
"Research shows XXY men have 4.4x higher metabolic syndrome prevalence and significantly elevated diabetes risk. I'd like HbA1c, fasting insulin, and hsCRP in addition to standard lipids – these detect insulin resistance and inflammation before fasting glucose becomes abnormal."
Reference: Bojesen et al. (2006) Diabetes Care
Bone Health
| Test | Why | Target Range |
|---|---|---|
| 25-OH Vitamin D | Critical for bone; predicts BMD better than testosterone | 40-60 ng/mL (100-150 nmol/L) |
| DEXA scan | Bone density baseline; 25-48% have osteopenia/osteoporosis | T-score > -1.0 |
| Calcium | Bone metabolism | 8.5-10.5 mg/dL |
| PTH | Secondary hyperparathyroidism common in XXY | 15-65 pg/mL |
Script:
"XXY research shows 25-48% prevalence of osteopenia or osteoporosis, often present regardless of testosterone status. Muscle strength and vitamin D predict bone density better than testosterone in this population. I'd like a DEXA baseline and vitamin D level. Also requesting PTH – secondary hyperparathyroidism is documented in XXY."
Reference: Grande et al. (2023) Endocr Connect; Ferlin et al. (2010) Mol Hum Reprod
Coagulation / VTE
| Test | Why | Target Range |
|---|---|---|
| Factor VIII | Often elevated in XXY; procoagulant | <150% |
| Homocysteine | Thrombophilia marker | <10 μmol/L ideal |
Script:
"Swedish registry data shows XXY men have 6.4x higher VTE risk overall, and 12x higher before age 30 – comparable to inherited thrombophilia. I'd like baseline Factor VIII and homocysteine. More importantly, I need to discuss VTE prophylaxis protocols for surgery or long-haul travel."
Reference: Zoller et al. (2016) J Am Heart Assoc
Critical ask: Establish that you should receive prophylactic anticoagulation for surgery, same as inherited thrombophilia patients.
Autoimmune
| Test | Why | Risk Context |
|---|---|---|
| TSH | Hypothyroidism 2.7x risk | 0.5-2.5 mIU/L optimal |
| TPO antibodies | Autoimmune thyroid marker | Negative |
| ANA | Screening for SLE, Sjogren's | Negative or low titer |
| GAD65 antibodies | Type 1 diabetes 6.1x risk | Negative |
Script:
"English national registry data shows XXY men have significantly elevated autoimmune risk – Sjogren's 19x, SLE 18x, Addison's 12x, Type 1 diabetes 6x, RA 3.3x, hypothyroidism 2.7x. These are typically female-predominant diseases, likely due to X chromosome gene dosage. I'd like baseline thyroid with TPO antibodies, ANA, and GAD65."
Reference: Seminog et al. (2015) Autoimmunity
Hormonal (Standard, But Complete)
| Test | Why | Notes |
|---|---|---|
| Total testosterone | Standard monitoring | Trough level if on TRT |
| Free testosterone | More accurate for tissue availability | Calculate or measure |
| Estradiol | Can elevate on TRT | 20-30 pg/mL on TRT |
| SHBG | Affects free T calculation | 20-50 nmol/L typical |
| LH, FSH | Baseline or monitoring | Suppressed on TRT |
Your endocrinologist likely covers this. If not:
Script:
"I'd like comprehensive hormone panel including free testosterone and estradiol, not just total testosterone."
The Full Request List
Print this or copy it:
Metabolic:
- HbA1c
- Fasting insulin
- Lipid panel (LDL, HDL, triglycerides)
- hsCRP
Bone:
- 25-OH Vitamin D
- Calcium
- PTH
- DEXA scan (imaging, may need separate referral)
Coagulation:
- Factor VIII
- Homocysteine
Autoimmune:
- TSH
- TPO antibodies
- ANA
- GAD65 antibodies
Hormonal:
- Total testosterone
- Free testosterone (or SHBG to calculate)
- Estradiol
How to Present This
Opening Frame
"I've been researching the full risk profile for Klinefelter syndrome based on recent literature. The standard hormone-focused monitoring misses several significant risks that are well-documented. I'd like to establish a comprehensive baseline."
If They're Receptive
Walk through the domains. Offer the references if they want them.
If They Push Back
"I understand this is more extensive than standard practice. The research is clear that standard practice for XXY is inadequate – it focuses on hormones while missing domains with equal or greater mortality impact. I'm happy to provide the journal references."
If They Refuse
You have options:
- Ask them to document the refusal in your medical record
- Request referral to endocrinology or hematology for specific domains
- Seek a second opinion
- Use private testing for some markers (vitamin D, glucose, lipids widely available)
You shouldn't have to fight for evidence-based screening. But sometimes you do.
Frequency
| Test Category | Baseline | Ongoing |
|---|---|---|
| Metabolic (HbA1c, insulin, lipids, hsCRP) | Once | Every 6-12 months |
| Bone (Vitamin D, calcium, PTH) | Once | Vitamin D: quarterly until optimized, then 6-monthly |
| DEXA | Once | Every 2 years (annually if osteopenic) |
| Coagulation (Factor VIII, homocysteine) | Once | Not routine unless abnormal |
| Autoimmune (TSH, TPO, ANA, GAD65) | Once | TSH annually; others if symptoms emerge |
| Hormonal | Per your TRT protocol | Typically every 3-6 months |
What You Can Test Yourself
Some markers don't require a GP:
| Test | Home Option | Cost |
|---|---|---|
| Fasting glucose | Glucometer from pharmacy | $30 + strips |
| Vitamin D | Home test kits (finger prick, mail-in) | $40-60 |
| Blood pressure | Home monitor | $50-80 |
See Track Yourself (Coming Soon) for full DIY protocol.
The Point
These tests exist. The evidence for requesting them exists. The gap is that no one's offering them to you.
You have to ask.
This page gives you the language to ask effectively – and the references to back it up if challenged.