OpenHealth Q&A

Desperate for Insights on Ongoing Health Crisis

Hello everyone. I’m reaching out to share my situation in hopes of gathering some much-needed opinions and insights. My age is 17, and I’ve been battling multiple health conditions, which include Generalized Anxiety Disorder (GAD), Post-Traumatic Stress Disorder (PTSD), Attention Deficit Hyperactivity Disorder (ADHD), Hashimoto's disease, hypothyroidism, Endometriosis, Postural Orthostatic Tachycardia Syndrome (POTS), and Von Willebrand's Disease. Currently, my medication regimen consists of fluoxetine, fludrocortisone, and levothyroxine, and I also have a Kyleena IUD that was inserted in October. I do not take any additional vitamins or consume recreational substances. For as long as I can remember, starting at the age of 5, I have experienced episodes of severe nosebleeds, with bleeding so significant it seems as if it comes from a major injury. At 8, I began to spit up blood—not through coughing but through a different mechanism. I can't share images due to my age, but the blood is a dark red hue and varies in size from that of a penny to a golf ball, sometimes even stretching to the length of a dollar bill. I have consulted various Ear, Nose, and Throat (ENT) specialists who have explored my nasal passages with cameras, but they found no underlying reasons for the bleeding. I've had nasal cauterization performed with no improvement. Further investigations involved a pulmonologist who ruled out lung cancer; they were also confident that the bleeding was not originating from my lungs. Earlier this year, in January, I was diagnosed with both Hashimoto’s disease and hypothyroidism following extensive blood testing. Subsequently, I received diagnoses for POTS in May, Von Willebrand’s Disease (VWD) in August, and endometriosis in October. An August visit to a hematologist confirmed the VWD diagnosis and raised the possibility of a genetic predisposition for the condition. The summer was particularly troubling, marked by unanticipated incidences of spitting up blood. I have visited the emergency room three times since then, the first being in September under the suspicion of an intestinal blockage, which was later dismissed. Immediately after having the IUD inserted, my symptoms seemed to stabilize briefly. Recently, two weeks ago, while at school, I had a shocking incident where I spit up around six quarter-sized blood clots and copious amounts of blood—about two handfuls worth. I took my emergency medication, tranexamic acid, and stayed home for recovery. Later that night, severe chest pain prompted my parents to take me to the emergency room where tests, including an EKG and chest X-ray, yielded inconclusive results. Throughout the ordeal, I have experienced episodes where I briefly stop breathing, although these moments are fleeting and I feel fine afterward. A week later, I participated in a planned endoscopy. Leading up to the procedure, a CT scan indicated no abnormalities, and a gastroenterologist recommended the endoscopy. They administered wilate prior to sedation, and fortunately, the procedure itself was normal, with no findings. However, just four days after the endoscopy (on December 14), I had another troubling episode. At around midnight, I spat up blood into the sink—approximately the size of a penny. Later that morning, while at school, I had similar incidents, including spitting a quarter-sized clot into a gum wrapper and repeating that multiple times within a short period, with a noticeable bright red color this time. My mother contacted my physician, and we rushed to the emergency department. I arrived with excruciating chest and abdominal pain, leading to my admission into the pediatric unit. I find myself currently writing this from my hospital bed, as doctors are struggling to identify the cause of my distress. A gastroenterologist has ruled out any gastrointestinal sources of the bleeding. They are now considering administering morphine for pain management, as Tylenol is proving ineffective. I feel weak, dizzy to the point of near fainting, and my headache is unbearable. Breathing has become increasingly difficult, and although I have not spat up blood since Monday morning, my pain level has intensified over time. EKG results continue to show no abnormal findings. If anyone has insights or suggestions regarding what might be happening to me, I would greatly appreciate your input. My family is exploring the possibility of finding a specialist in Boston, yet I feel an urgent need for some clarity on my condition. We have been searching for answers for years now, even if they are only partial. Thank you in advance for any assistance you can provide.

Answers (1)

12/17/2025, 3:25:52 AM

OpenHealth AI

I'm really sorry to hear about the distressing symptoms and challenges you've been facing. It's clear that you're experiencing a complex situation with multiple interacting health conditions. The symptoms you describe – particularly the severe nosebleeds, spitting up blood, and ongoing pain – are concerning and understandably cause significant anxiety.

Main Points:

1. Your bleeding episodes, despite thorough evaluations, remain unexplained.
2. You have several diagnosed conditions that may contribute to your symptoms.
3. You're currently in a hospital setting where monitoring and management are critical.

Explanation:

Given your health history, the episodes of bleeding likely relate to the Von Willebrand’s Disease (VWD) which affects blood clotting. VWD can sometimes cause bleeding that is difficult to control and may lead to symptoms like those you're experiencing. Conditions like POTS might contribute to blood flow or pressure changes that could exacerbate bleeding events. Furthermore, medications like tranexamic acid can help manage bleeding but may not stop it entirely.

It's important to continue working closely with your medical team. They are best positioned to evaluate and create a management plan tailored to your needs.

Next Steps:

1. Maintain Open Communication with Your Care Team: Ensure that you keep discussing your symptoms, especially any changes, with your doctors. Share the full extent of your bleeding episodes, pain levels, and any bouts of dizziness or breathing difficulties.

2. Post-Event Monitoring: After you have bleeding incidents, keep a log of occurrences, including the volume of blood, any precipitating factors (like stress, medications, or position changes), and associated symptoms. This information can provide medical professionals with insights for diagnosis.

3. Pain Management: If morphine is prescribed, ensure you're monitored closely as it can have side effects, especially in your case with POTS. Discuss with your doctor the effectiveness of pain relief and any alternative options if morphine isn't suitable.

4. Explore Specialist Support: It seems you’re considering finding a specialist in Boston. This could be beneficial. Look for specialists who focus on hematology and conditions that overlap with your symptoms.

5. Support Network: Engage with supportive networks, including mental health services, to help cope with the emotional stress of living with multiple chronic conditions.

6. Follow-Up Appointments: Once stabilized, prioritize follow-up appointments to continue monitoring your conditions and adjust treatments as necessary.

Remember, you are not alone in this, and reaching out for information and support is a vital step in managing your health. Take care, and I hope for clarity and improved comfort for you soon.