Top Tweets for #Men1
I would love to discuss this with you. I have seen a lot of patterns over my 7 years locked into the medical system. These things have in my opinion, left my brain tumor undiagnosed and misdiagnosed as something else. I have had it since at least 2016 that I can date it back to in my records and I currently sit here suffering. I have figured out what it is through AI. My doctors are literally not looking at my pet scans and when they do they have no clue what it means. They say it's totally fine. It's normal.
I am suffering and I need to be a diagnosed with a pituitary tumor that is secreting certain hormones. I have the blood work for all of that. I have all my records. Because he's doctors are having issues because it is not a textbook pituitary tumor. However, it does not matter. What does a patient do in this situation? I have been chasing a diagnosis since 2022. I have more symptoms in every new doctor I go to, and I mean top doctors, are not looking at my pet scans along with my MRI and my blood work. The hormones that the blood work is giving off is menopausal hormones.
So I'm constantly getting diagnosed with menopause.
I cannot take it anymore. I have reached out everywhere in three different states. And got misdiagnosed. And because of AI I have figured it out. Why aren't doctors doing this? Why are they so lazy? I have many things that if you get robots into the medical system, that I hope you would incorporate into them.
But in the meantime, you are a man of many things. How do you advise me about going about getting a diagnosis that I have a pituitary tumor secreting hormones. Especially in the setting of MEN1 diagnosis.
I need to know. I cannot diagnose myself. I have already asked. What do I do?
I am suffering every single day!
I did it! All three stages have been submitted.
Please pray for me that it will all get acknowledged and that I prevail victoriously in all of them!
I need Healing and Justice.
💪✝️🙏 #pituitary #PituitaryAdenoma #MEN1 #NeuroendocrineTumors #MedicalSystemFailure
If I am victorious in the third stage, I'm going to make a huge change. 🙏 There is going to be a NEUROENDOCRINE TUMOR section of every top Hospital and Cancer Centers. Especially Pituitary Centers of Excellence.
🙏✝️GOD WILLING✝️🙏
@PituitaryWNews @Pituitary_org @pituitaryorg #MEN1 #PITUITARYADENOMA
Hello. I would like to know why 14 Specialists have misdiagnosed me, and I still have a pituitary adenoma in my head that is secreting at least two hormones since 2016.
I want to know why I have to live in hell because the doctors are missing my diagnosis. Even after I tell them what I think it is, they tell me that the pituitary does not have uptake on a Dotatate PET scan. I want answers as to why this pituitary neuroendocrine tumor is still in my head and not diagnosed, and constantly misdiagnosed. Since the beginning of 2023. I want answers because this is still in my head.
FSH level 201.4
LH level 109.7
Gallium 68 DOTATATE PET CT scan 2021 - 2026 shows uptake in the pituitary and each year there was more uptake. It is now at 36 SUV in the pituitary.
BRAIN MRI show pituitary adenoma
I have MEN1, two previous parathyroid surgeries.
I WANT ANSWERS!!!
Sincerely,
A patient that has been severely wronged and dismissed by the medical system
🩻Are we over‑scanning #MEN1? New data suggest yes.
Dr. Jha (@NIDDKgov) explains why routine #MRI surveillance for nonfunctional #pituitary adenomas adds little—& how symptom‑ & lab‑guided imaging may cut years of scans.
Read the Q&A👉️https://t.co/4J6Mvx48eA
#MedTwitter

📚 Retomamos sesiones clínicas.
Nuestra residente María Ruiz ha realizado excelente revisión de la #MEN1:
🔬 Actualización en cribado y seguimiento (AACE 2025)
🧬 Retos diagnóstico genético
⚖️ La importancia de individualizar cada decisión
@NeuroendocrinoS @GrupoGetne @SAEDYN_

Treatments for MEN1-associated endocrine tumours: three systematic reviews and a meta-analysis https://t.co/hfjXyCxPFs #MEN1
#OpenAccess
Happy Rare Disease Day from the AMEND USA team! We hope you join us in supporting and advocating for the MEN community.
#RareDiseaseDay #ShowYourStripes #rarediseases #men1 #men2 #mendisorders
Welcome to AMEND USA! We're here to rasie awareness, educate, and connect individuals impacted by MEN disorders. We're glad you're here. Visit the link in our bio to view our website and resources!
#men1 #men2 #mendisorders

Happy Rare Disease Day! MEN disorders are genetic rare diseases. AMEND USA is dedicated to increasing awareness for these disorders. For more information, visit our website: https://t.co/pXWdjk0iZ4.
#RareDiseaseDay #ShowYourStripes #rarediseases #men1 #men2 #mendisorders

Grateful to present at Oncology Grand Rounds @SchulichMedDent @WesternU today.
Beyond the 3 P’s: Expanding the Oncologic Spectrum of #MEN1
Great discussion on adrenal lesions, dpNETs, and multidisciplinary management in MEN1.
Thank you to everyone who joined and contributed.

🔶New directions in MEN1 management: navigating the new clinical practice guidelines
✍️ La #MEN1 sigue siendo un síndrome clínicamente desafiante debido a su heterogeneidad genética, penetrancia variable y necesidades de vigilancia durante toda la vida
https://t.co/GFqJbiGbKh
@NeuroendocrinoS

🆕️Must Read 📚 “Are we overtreating small MEN1 pNETs?”
#MEN1 & pancreatic #NETs
Key challenges in detection & management
Lancet Diabetes & Endocrinology
@TheLancet
🟡 pNETs in >80% of MEN1 pts → ~50% of disease-specific deaths
🟡 Distinct from sporadic pNETs: younger onset, multifocality, coexisting tumors
🟡 Major controversies: when to operate, how to surveil small NF-pNETs
🟡 Biomarkers limited → MRI, EUS & SSTR-PET are complementary
🟡 Management must be individualized & multidisciplinary
👥 Dr. Chris Yates Dr. Paul Newey
✍️ Prof Rajesh V Thakker (@UniofOxford)
https://t.co/kYLQgKP77M

Multiple endocrine neoplasia type 1 (#MEN1) is characterised by combined occurrence of #parathyroid tumours, #duodenopancreatic #neuroendocrine tumours, and anterior #pituitary adenomas https://t.co/Zb8Y3OQ7je
#MEN1
#FREE to read with registration (also FREE)
Really enjoyed @TheAACE Clinical Guidance Forum Consensus Statement on Management of MEN1!
Grateful to Drs. @sina_jasim, @JaydiDelRivero, and @AGangiMD for sharing the latest updates and expert insights. #Endocrinology #MEN1 #WeAreAACE

Multiple endocrine neoplasia type 1 (#MEN1) is characterised by combined occurrence of #parathyroid tumours, #duodenopancreatic #neuroendocrine tumours, and anterior #pituitary adenomas https://t.co/Zb8Y3OPztG
multiple endocrine neoplasia type 1
#FREE to read w/reg (also FREE)
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