Help with internal medicine treatment

Please remember to advocate for yourself and your health. This is my experience.

Thank you for taking the time to read about my journey.

For the last nine months, our lives have completely changed.

Life started to change for my health back in August when my doctor called me letting me know that one of my levels was high from a blood test. At that time, I felt normal, no health challenges. My doctor referred me to an endocrinologist. From there, numerous labs were ran. Each lab coming back normal. In October, I ran a 5k and started developing a pain in my chest. Something felt wrong but I could not pin point the issue. I had not really exerted myself and it seemed difficult to catch my breath. Two weeks after the run, I developed this burning sensation that would take a hold of all of my body. I ended up in the ER and was release as all my labs came back again within range with the exception of my white blood cells and platelets reflecting as high. I went back to the endocrinologist, and asked to have a neck ultrasound as my neck was hurting and it became difficult to swallow. The endocrinologist was reluctant to do the neck ultrasound but agreed to it. The scan came back and reflected two hypochoic solid nodule that measures 0.7 x 0.4 x 0.6 cm at the mid pole (TR4). The endocrinologist thought it was odd that there were two nodes the same size. When I asked if the nodes could be tested for a biopsy, the endocrinologist said I would have to wait six months, the nodes were not big enough for biopsy. Since then, I have had a secondary scan that is now reflecting 4 nodes.

During this time, my health continued to declined with feeling fatigued, body aches, loosing weight ( 25 pounds down)developing fevers that the doctors could not pin point and starting to noticed my heart rate would elevate every time I got up or changed positions from sitting to standing. I went back to my primary who assigned me to see multiple specialist, including an oncologist. The rheumatologist ran test and said I needed to exercise more. The oncologist said I needed to take more iron pills to increase my iron.

Fast forward to today, I’m in constant pain, my heart is still giving me issues although I’m on medicine, I’m extremely fatigued with a burning sensation all thru my body and none of the specialist can explain why my platelets or white blood cell count are high. No one can explain why my iron is so low that I had to obtain two iron infusions and no one can explain why my liver is enlarged by 7cm of the normal range. My stomach is my biggest complaint.

I share my experience in hopes that if you ever experience something similar, you continue to advocate for your health. Please, please fight for your health.

If you have read this far, thank you for allowing me to vent and share.

Out of desperation, I started seeing an internal medicine doctor who performed a liquid biopsy. The liquid biopsy came back positive for circulating tumors. This week, god willing, I will head to Clearwater to the internal medicine doctor for treatment. I can’t continue to wait on my doctors as I continue to decline. The therapy they are offering is called Supportive Oligonucleotide Therapy (SOT). Each treatment is 2,000 which would be all out of pocket. I have to at least try.

I apologize if I’m all over the place, this has been more than I can handle. I just want to be better for my family. They are my world. I want to be able to rejoin my team at work that I miss dearly.

Forever grateful for your support.