I have A-Craniopharyngioma: Help me understand my results

DamionH1002

New Member
Hello everyone. Im 21, and was recently diagnosed with A-Craniopharyngioma, and three months post surgery I had testing done for my Testosterone. I’m sure I’ll have to start TRT. I do experience the symptoms like low libido, no energy, I get fatigued pretty fast when working out and just can’t gain any muscle mass. I'm not very informed on the subject, so I just wanted to ask, given my test results, should I be pushing to start TRT as soon as possible, and how much of an effect/benefit would TRT have on me? Thank you, really appreciate it!
 

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Hello everyone. Im 21, and was recently diagnosed with A-Craniopharyngioma, and three months post surgery I had testing done for my Testosterone. I’m sure I’ll have to start TRT. I do experience the symptoms like low libido, no energy, I get fatigued pretty fast when working out and just can’t gain any muscle mass. I'm not very informed on the subject, so I just wanted to ask, given my test results, should I be pushing to start TRT as soon as possible, and how much of an effect/benefit would TRT have on me? Thank you, really appreciate it!
From what I understand about A-Craniopharyngioma, you may be able to recover normal function if they can resolve the issue with the tumor. In the meantime I would ask for TRT because your numbers are really low and would definitely cause the issues you are experiencing.
 
Welcome to ExcelMale. I am glad you joined us.

I am glad that you got diagnosed and that you are post-op. Now it's time to rebuild your hormones!

I did a deep dive on your condition and came up with a few suggestions.


Does hypogonadism resolve after surgery removal of A-Craniopharyngioma?

Short answer: No, hypogonadism rarely resolves after craniopharyngioma surgery—and it frequently worsens.


The evidence is quite consistent on this point:


Pre- vs Post-operative Hypogonadism Rates​


The preoperative hypogonadism incidence in craniopharyngioma patients was 74.2%, which increased to 90.9% postoperatively. PubMed Central Preservation of the pituitary stalk does not lead to restoration of the pituitary-gonadal axis in 83% of cases. Endocrine Abstracts


Why Recovery Is Exceptional​


The recovery of any deficient adenohypophysial hormone in the preoperative study, sometimes occurring after surgery for a pituitary macroadenoma, is exceptional in patients with craniopharyngioma. Elsevier This contrasts sharply with pituitary adenomas, where about half of preoperative deficiencies can recover.

No patients with a craniopharyngioma or meningioma had resolution of hypopituitarism after transsphenoidal surgery, while new hypopituitarism occurred in approximately one third of patients. PubMed

Overall Pituitary Dysfunction Post-Surgery​


The proportion of patients with deficiency of some adenohypophysial hormone reaches 87–95% after tumor surgery, regardless of whether a transsphenoidal or transcranial approach is used or whether total or partial tumor resection is performed. Elsevier

Clinical Implications​


Patients should expect lifelong testosterone replacement therapy post-craniopharyngioma resection. Due to the high prevalence of post-operative hypothalamic-pituitary dysfunction, patients with craniopharyngioma usually require long-term multiple hormone substitution therapy. PubMed Central


The best-case scenario from one surgical series showed gonadal function was the axis least likely to worsen—but that's only relative to other axes, not actual recovery.

Suggestion: Start testosterone cypionate or enanthate injections at 75 mg twice per week plus hCG 500 IU twice per week. Watch this video on how I do it: Nelson Vergel 's Testosterone plus HCG Protocol - Excel Male Health Forum

Also, have your doctor perform blood tests as listed below to find out if you are also deficient in other hormones. You can choose to do this 6 weeks after doing the TRT+hCG protocol.




3-MONTH POST-OP ASSESSMENT​

This is a critical evaluation point. All axes should be tested to establish post-surgical baseline and guide hormone replacement.

Gonadal Axis (Secondary Hypogonadism)​


TestResultRangeDate
☐​
Total Testosterone
☐​
Free Testosterone
☐​
LH
☐​
FSH
☐​
SHBG
☐​
Estradiol (E2)
Note: Low/normal LH and FSH with low testosterone confirms secondary (central) hypogonadism. Morning draw essential.

Thyroid Axis (Central Hypothyroidism)​


TestResultRangeDate
☐​
Free T4
☐​
Free T3
☐​
TSH
Critical: TSH is unreliable in central hypothyroidism. Dose adjustments should target Free T4 in mid-to-upper normal range.

Adrenal Axis (Secondary Adrenal Insufficiency)​


TestResultRangeDate
☐​
Morning Cortisol (8am, before HC dose)
☐​
ACTH
If on hydrocortisone: draw morning cortisol BEFORE taking AM dose. Clinical symptoms guide dosing more than labs.

Growth Hormone Axis​


TestResultRangeDate
☐​
IGF-1
GH deficiency is very common post-craniopharyngioma. Low IGF-1 supports diagnosis; stimulation testing may be needed.

Prolactin & Water Balance​


TestResultRangeDate
☐​
Prolactin
☐​
Serum Sodium
☐​
Serum Osmolality
Monitor sodium if on DDAVP. Hyponatremia indicates overtreatment; hypernatremia indicates undertreatment.

Metabolic Health (Baseline & Monitoring)​


TestResultRangeDate
☐​
Fasting Glucose
☐​
HbA1c
☐​
Fasting Lipid Panel
☐​
Comprehensive Metabolic Panel
☐​
CBC
☐​
Vitamin D, 25-OH
Hypothalamic obesity and metabolic syndrome are common after craniopharyngioma. Monitor closely.

TRT MONITORING (8 Weeks on Testosterone)​

These tests monitor safety and optimization of testosterone replacement therapy.


Test

Result

Range

Date

☐​
Hematocrit / Hemoglobin

☐​
Prolactin & IGF-1

☐​
Estradiol (E2) Sensitive

☐​
Total Testosterone (trough)

☐​
Free Testosterone Eq. Dialysis
Draw trough levels (day before next injection for weekly protocols, or morning for daily gels/creams).

LONG-TERM MONITORING SCHEDULE​


Timeframe

Tests Required

Every 3-6 months

Complete pituitary panel, metabolic labs, TRT monitoring if applicable

Every 6-12 months

MRI surveillance for tumor recurrence, IGF-1, comprehensive metabolic assessment

Annually

Full endocrine evaluation, lipid panel, HbA1c, bone density (DEXA) if GH deficient
 
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