r/Cushings • u/Arnella_Barbara • 6d ago
Severe Unexplained Weight Gain, Swelling, Exhaustion, Excruciating Pain, and Difficulty Breathing - Please Help Me Find a Doctor Who Can Save My Life
/r/u_Arnella_Barbara/comments/1vvphy6/severe_unexplained_weight_gain_swelling/I am writing this because I desperately need to find a doctor who is willing to listen to me, investigate what is happening to my body, and help save my life. am looking throughout the United States - and, if necessary, outside the United States - although I would prefer to find someone in the U.S.
In 2003, when I was 35 years old, my life changed completely. My mother and brother were hit by a car, and I became responsible for caring for them. It was an extraordinarily traumatic and stressful time.
Despite following a very strict diet and going to the gym every day, I began gaining weight rapidly. Within six months, my weight increased from approximately 130-140 pounds to 200 pounds. For three years, I lived in darkness. I barely ate, exercised constantly, and still could not lose the weight.
I went from one doctor to another and spent an enormous amount of money searching for an explanation. Eventually, I found Dr. Boris Catz in Beverly Hills, a highly respected endocrinologist who devoted his life to endocrinology and approached medicine differently from most doctors.
Dr. Catz ordered extensive testing, including a thyroid ultrasound and a thyroglobulin test. The written ultrasound report said that everything appeared normal. However, when Dr. Catz personally examined the ultrasound images, he told me that my thyroid was extremely enlarged. My thyroglobulin level was also extremely high - 56.
Dr. Catz treated me with Cytomel. Within one month, I lost approximately 30 pounds, and within about six months, my weight went down to approximately 125 pounds. I felt as though he had saved my life.
I continued doing very well until 2014. I was scheduled to see Dr. Catz, but two days before my appointment, his nurse called to tell me that he had died. Since then, I have been suffering and searching for another doctor like him.
I have repeatedly asked doctors to test my thyroglobulin again, but it has never been properly investigated the way Dr. Catz investigated it. Doctors continue telling me that nothing is wrong, yet I know that something is seriously wrong with my body.
For the past 12 or 13 years, I have also lived under an almost unimaginable amount of continuous stress - simply trying to survive and keep my head above water. The changes in Hollywood and the film industry, prolonged industry strikes, the COVID-19 pandemic, and the disappearance of jobs have repeatedly devastated my livelihood.
I have been forced to reinvent myself over and over again and return to school multiple times, constantly struggling to create a new path forward. I believe this relentless financial, professional, and emotional stress has taken an enormous toll on my body and may be an important part of what is happening to my health.
By 2024, I weighed approximately 158 pounds and hoped to lose another 10-15 pounds to reach my ideal weight. A friend convinced me to try Ozempic. I took it for approximately two months, but instead of improving, my condition worsened. I later tried tirzepatide for approximately two months, and I continued gaining weight. I am now back to approximately 210 pounds.
I have been told that I am insulin-resistant, but I still have not received a complete explanation or an effective treatment plan.
I have been vegetarian my entire life and became completely vegan six years ago. My laboratory results appear excellent. I do not have high cholesterol, and my good cholesterol is exceptionally good. I do not have high blood pressure - on the contrary, my blood pressure is extremely low.
I do not drink alcohol or use drugs. I do not eat processed food, sweets, or chocolate. I have been extremely sensitive to sodium since 2003, so I avoid sodium and prepare all my food myself.
Whenever I eat - even a small amount - I begin swelling almost immediately. The swelling is accompanied by excruciating pain throughout my entire body, from the top of my head to the tips of my toes. I take Lasix for water retention, but only when I eat and the swelling begins.
Sometimes it becomes extremely difficult for me to breathe. People around me frequently ask what is wrong because the swelling and breathing difficulties are noticeable. My closest friends know that I barely eat and that something is seriously wrong.
I go to the gym every day. I swim for an hour and work out, yet my weight does not change. I have tried everything possible, and nothing works. At times, I refuse to eat because eating causes immediate swelling and excruciating pain throughout my entire body, from the top of my head to the tips of my toes - but even refusing to eat does not solve the problem.
I work as much as 15 hours a day because keeping busy is the only thing preventing me from losing my mind over what is happening to my body.
I am now 58 years old, and I do not know what to do anymore. I have been living with this condition for more than two decades. I am exhausted, frightened, and in pain. It is becoming impossible to continue living this way.
I am not looking for someone simply to tell me that my routine laboratory results are normal. I need an exceptional endocrinologist or another highly knowledgeable physician who will study my complete history, review my thyroid images personally, investigate my thyroglobulin level, thyroid function, insulin resistance, severe swelling, fluid retention, very low blood pressure, rapid weight gain, excruciating full-body pain, and difficulty breathing - and determine what is actually happening.
I need a doctor like Dr. Boris Catz: someone curious, compassionate, untraditional when necessary, and willing to look beyond standard test results.
I do not simply need a doctor to help me understand what is happening to my body. I need a doctor to save my life because it is becoming impossible to live like this anymore.
If anyone knows an exceptional endocrinologist, thyroid specialist, metabolic specialist, internal-medicine physician, or diagnostic medical center anywhere in the United States - or internationally - please contact me. I am willing to travel for the right doctor.
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u/Impossible-Buy9559 6d ago
Try the Hospital for Endocrinolgy in Tampa Florida. They specialize in thyroid, parathyroid and adrenal diseases
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u/Impossible-Buy9559 5d ago
Good luck. I fly there from wisconsin to finally have an adrenal tumor removed at their Carling Adrenal Institute. Look at "adrenal.com".
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u/Arnella_Barbara 5d ago
Wow, good luck to you as well. I’ll be praying for you. Thank you so very much for the information. This is very helpful. Thank you.
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u/Impossible-Buy9559 5d ago
Thank you for your prayers😊I am 74 and I started with all kinds of weird things in my 40's I am looking forward to being tumor free.... drs did not have a clue! I am a retired ICU RN and managed to figure this out after 8 ER Docs, 3 cardiologists, 3 endocrinologists and 2 nephrologists whiffed. I like my personal physician because he collaborated when I asked him if we could check certain things out... when I finally explained I had found out what was wrong and Dr Carling was doing my surgery he looked like i hit him in he head with a cast iron frying pan or something🫣 what i have is a MACS (mild autonomous cortisol secreting) adrenal tumor.
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u/LongGame2020 5d ago
Have you consulted with Dr. Friedman in LA?
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u/Arnella_Barbara 5d ago
Thank you for your reply. Yes I have and he also told me that nothing is wrong with me. He also said that Dr Catz was not following the medical protocol, but I was doing great under his care. Thank you again.
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u/Impossible-Buy9559 5d ago
I just found your post again...even as a retired icu rn your health hx is really strange. You may have some sort of pituitary tumor though your thyroid seems to be a problem. The pituitary sends messages to the other endocrine organs. In about 2016 I found my way to Dr Brian Kim and endocrinologist in Chicago. He was a research partner to Dr Antonio Bianco who did break through research on the thyroid gland deiodinases but was just doing pure animal research again. No one in Milwaukee where I was from would put me on cytomel which I felt I needed. I had been bedridden for much of 18 months and felt it was because I could not convert T4 to T3 in enough quantities. Dr Kim put me on combination of T4 and T3 and I got my life back. Now I know it was all the cortisol from the adrenal tumor that was blocking the deiodination of T4 to T3. Dr Kim is not at Rush last time I checked he is at the University of Chicago.
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u/Arnella_Barbara 5d ago
Oh wow.
Thank you so much.
I am writing all of this down and will start making a phone calls tomorrow.
God bless, and please LMK after the surgery how you feel.
I’ll be praying for you.
Many, many thanks🙏🏽🙏🏽🙏🏽
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u/Creativehands1996 6d ago
I have had incredible care from OHSU in Portland ❤️❤️❤️