OpenHealth Q&A

Questioning My Pituitary Lesion’s Impact on My Health

I’m a 23-year-old female with a noteworthy lesion on the posterior left side of my pituitary gland, measuring 11mm in width, 8mm in height, and 6mm in depth. The radiology report indicates that my infundibulum is midline but truncated as a result of this lesion. Staying active is essential to me; I typically engage in weight lifting and workouts around five days each week, performance permitting. My height is 5’6” and I weigh approximately 160 pounds, although my weight has varied between 148 and 168 over the last eight months. My physically demanding job has become increasingly challenging. I experience a range of symptoms, such as: - Extreme fatigue - Hair loss - Migraines originating from the left side of my head, specifically behind my left eye and at the base of my skull (these are new for me) - Numbness and tingling in my face and left arm during severe migraine attacks - Occasional blurred or double vision - Altered body odor and perspiration levels - Vertigo - A sensation of a lump in my throat (I suspect this is linked to my pituitary lesion and thyroid issues, although my thyroid levels appear normal). Despite my efforts to communicate these concerns to medical professionals, my neurologist insists that my condition is symptom-free. The imaging report hints at possibilities including hemorrhagic pituitary microadenoma, pituitary apoplexy, or proteinaceous material within a Rathke cleft cyst, among others. I have an appointment with an endocrinologist lined up and aim to seek another neurological opinion as well. However, I find myself questioning my own sanity. I’m in constant discomfort, struggling to gather the energy for daily tasks, and enduring migraines that mimic stroke symptoms weekly. The debilitating pain and pressure behind my left eye are distressing almost daily. As I prepare for my upcoming endocrinologist appointment, I’m unsure how to organize my thoughts and articulate my feelings properly. All my recent DICOM files have been sent, but I want to ensure I present my situation clearly. I have been experiencing pain continuously since I was 15 years old. Each time I voice my concerns, I can’t shake the feeling of being dismissed due to my age, fitness level, and apparent health. Should I discontinue any supplements ahead of blood tests? Is fasting required? Should I request particular tests? What’s the best way to track my headaches or energy fluctuations? Any recommendations would be appreciated. Additional Information: - Diagnosed with a pituitary cyst/adenoma (my doctor hasn’t specified which, nor do I fully understand the difference), ADHD, recurrent depression (currently in remission), lumbar/thoracic spondylosis, and cervicalgia in the occipito-atlanto-axial region. - Medications/Supplements: I currently take methylphenidate (Concerta, 27 mg CR), spironolactone (100 mg for acne), sumatriptan (50 mg for migraines, though it isn’t very effective), IUD (Liletta, placed August 2024 after replacing Kyleena from 2019), Xyzal (5 mg for seasonal allergies), magnesium, omega-3 fatty acids, vitamin D (2000 IU), vitamin C, vitamin B12 (suggested in my last appointment), vitamin A, and L-lysine (1000 mg, recommended for cold sores). Possibly relevant details include receiving trigger point injections for headache relief. The initial treatment yielded positive results, addressing neck tension, but subsequent sessions offered little benefit. In April 2024, I suffered a concussion and corneal abrasion from a workplace accident, which I initially believed to be the source of my ongoing pain and neck problems. However, the emergence of severe sleep disturbances and the discovery of the pituitary lesion shifted my focus. Though my primary care provider has assessed my thyroid function and inflammatory markers, results showed normal levels. I suspect these assessments may not have been thorough enough based on my limited research. I am more than willing to provide further details. I have posted additional information in a different subreddit that may illuminate my situation more clearly if needed.

Answers (1)

7/10/2025, 10:30:54 PM

OpenHealth AI

It sounds like you're facing a challenging situation with your health, especially considering the complexity of symptoms and the pituitary lesion. I commend your proactive approach in seeking a second opinion and further evaluations. Let's break down your concerns and provide some actionable steps as you prepare for your endocrinologist appointment.

Main Points:

1. Organizing Symptoms and Concerns: You have various symptoms that may relate to the pituitary lesion, which could impact your energy levels and overall well-being.
2. Preparation for Your Appointment: Conveying your symptoms clearly and considering specific tests will be crucial.
3. Ongoing Management of Symptoms: Tracking your symptoms and understanding your treatment options will help you feel more in control.

Explanation:

The pituitary gland regulates many body functions, including energy levels, stress response, and hormonal balance. Your symptoms—like extreme fatigue, migraines, and changes in sensation—can sometimes be associated with pituitary abnormalities, including adenomas or cysts. The differences between a pituitary adenoma and a cyst can influence the management approach, which underscores the importance of clarity in your diagnosis.

Actionable Steps:

1. Organize Your Symptoms:

   • Create a list documenting the following:
     • When each symptom started and how frequently they occur.
     • Any triggers you've noticed (e.g., stress, diet, sleep patterns).
     • Severity of symptoms on a scale of 1-10.
   • Use this list in your appointment to guide the discussion and ensure all concerns are addressed.

2. Request Specific Tests:

   • Inquire about blood tests for hormonal levels, including cortisol, thyroid hormones, and growth hormone, specifically looking for abnormalities that may relate to your symptoms.
   • If the findings are inconclusive, suggest imaging studies (like MRI scans) to reassess the lesion, especially if symptoms worsen.

3. Documentation and Tracking:

   • Use a headache diary to track your migraines. Note the frequency, intensity, duration, and any accompanying symptoms (like nausea or visual changes).
   • Track energy levels daily to see patterns and potential correlations with other symptoms, which can help the endocrinologist tailor your management plan.

4. Consultation Preparation:

   • Consider discussing the possibility of referrals to pain specialists or neuro-ophthalmologists if your headaches and vision issues persist.
   • Bring records of past medical evaluations and the current list of medications/supplements you take to ensure a comprehensive review.

5. Manage Supplements:

   • As for supplements and blood tests, it is often advisable to stop certain supplements (like vitamin E or fish oil) before testing. However, consult your endocrinologist for personalized advice on this matter. Fasting may not be necessary unless specified.

6. Prioritize Self-Care:

   • Engage in gentle, restorative activities like yoga or meditation to help manage stress, which can also help mitigate some headaches.
   • Continue monitoring and managing hydration, nutrition, and sleep hygiene to boost energy levels.

Closing Reassurance:

It’s completely normal to feel overwhelmed with such complex health issues, but addressing your concerns systematically will empower you during appointments and improve communication. Gathering your thoughts and creating clear documentation can help alleviate the sense of being dismissed. Remember, your health matters, and you're doing the right things by advocating for yourself. If further detail or clarification is needed, I’m here to help!