Cushing’s Syndrome With a Pituitary Tumor
As a pharmacist, I always believed I had a good handle on most health conditions and the proper steps for diagnosis. It wasn’t until my daughter became very ill in 2014 that I would learn that not all conditions are so simple. After many months of dealing with her mystery illness and through much study, I came upon Cushing’s Disease, which is a condition of excess cortisol production. All of her symptoms seemed to coincide with this disease. She had insomnia, central weight gain, substantial stretch marks, a buffalo hump, flushing, anxiety, difficulty concentrating, muscle weakness, constipation and diarrhea, extreme fatigue and several others. However, her labs were not so clear cut. After two months of rigorous testing and a confirmation of a pituitary tumor on an MRI, she had a diagnosis and a surgery date.
At first, her surgery seemed to be very successful. Her anxiety, flushing, and fatigue went away. Stretch marks stopped appearing and the old ones began to heal. She showed improvement for awhile, and then her health began to decline again. Some of the old symptoms were returning. Then, she developed new symptoms similar to what are seen in the condition referred to as POTS, or postural orthostatic tachycardia syndrome. She had low blood pressure, orthostatic hypotension, temperature dysregulation, and many others. Her pathology report had always troubled me since her surgery and I wondered if the excess cortisol production was actually due to an underlying stress not yet identified.
As I began my journey into functional medicine, I became more aware of the microbiome and what a vital role it can play in our health. I studied small intestinal bacterial overgrowth (SIBO), small intestinal fungal overgrowth (SIFO), and dietary induced vitamin and mineral deficiencies. Each of these areas were clues that I needed in order to put together all the pieces of this incredibly intricate puzzle.
Maybe It Was Thiamine Deficiency
It was not until I came upon a book entitled “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition” that all the pieces really started to fall into place. Could a thiamine deficiency be the underlying cause for all of this? I began to wonder if it was not just the surgery that improved her health, but also the IV of vital nutrients that maybe her poor body was unable to absorb. Magnesium is always given prior to brain surgery which activates thiamine into its active form. And, I’m sure her IV nutrition would have contained vitamins such as thiamine. This would have explained some of the improvements we saw that seemed to have no explanation.
We started a regimen of high dose thiamine along with a stronger gut healing protocol for SIBO and SIFO. I wanted to make sure we alleviated any issues that could cause malabsorption of thiamine. Within 3 months on thiamine, my daughter’s lab work improved dramatically. For the first time, she had normal levels of platelets and serum calcium. Also, her cholesterol dropped 35 points and was finally within normal range. Many other markers of concern also showed great improvement. She also had no more symptoms of POTS. Finally, I had found my answer.
I became obsessed on obtaining as much information I could about this deficiency. I researched the mild to severe symptoms and how this nutrient deficiency was prevalent in so many disease states. At this point, I had no idea that this information, which was helping my daughter, would prove to be life-saving knowledge for my grandmother.
Acute Onset Wernicke’s Syndrome In a Hospitalized Elderly Woman
I faced my worst nightmare recently, watching my 90 year old grandmother undergo a descent into severe thiamine deficiency. She has been in the hospital for a bad fall that fractured several ribs and gave her a lung puncture. In addition to the infection from the lung puncture, she had a UTI and then developed pneumonia. All of these factors increased her risk of thiamine deficiency due to the infection, which is clearly stated as a source of thiamine deficiency in the literature.
When I finally made it to the hospital, I could see that she had progressed to Wernicke’s encephalopathy. This was absolutely horrifying. She had severe eye paralysis and it was as if she was looking straight through me. She could not focus her pupils on my face at all. She was able to focus only for one split second and then a tear rolled down her cheek. I literally thought I was going to pass out. I had been studying all the symptoms to look out for in severe thiamine deficiency and now it was staring me in the face. I knew without a shadow of a doubt this was what was wrong, but I wondered “will the doctors listen to me?”
I had asked them several days prior to give her IV thiamine and I was under the impression that they were administering it, but they were only giving her an oral dose of 100 mg daily per the recommendations of one of the physicians. She went into respiratory distress in front of me and I had to agree to let them put her on a ventilator. They wanted to check a thiamine level before giving, and I said that was not always accurate according to studies. I had to beg the nurse practitioner that night to give her something and she agreed to a 100mg injection. I finally saw the doctor the next morning and she agreed to one of the accepted regimens for Wernicke’s Encephalopathy which is 200mg IV three times daily. She agreed that there was no real risk to giving it to her and I was grateful that she trusted my recommendation. I went home and waited for a miracle.
Thankfully, the next day she woke up from this coma-like state. Two days later she was off the ventilator and able to speak with me showing incredible improvement. She has been confused on and off since this incident, but according to studies, this may last for weeks or possibly months. She is 90, so I know this has been very hard on her frail body and her recovery will probably take much longer than a younger person.
Both Chronic and Acute Thiamine Deficiency Go Unnoticed
I hope this was a real wake up call to the staff at the hospital where she is staying. How many other people are suffering from this condition and it goes unnoticed? How many people are dying that could be saved? This is not a rare condition and is certainly not limited to alcoholism. My grandma has not had alcohol in years. She had low thiamine levels going into the hospital, and the infection just pushed her over the edge.
I had prayed for years to determine what could be causing my daughter’s health issues and I believe there was divine intervention that finally led me to thiamine deficiency. To be given this knowledge which is helping to heal my daughter and soon afterward be able to utilize it to save my grandmother’s life is absolutely incredible.
My daughter was suffering from a long term, chronic, mild to moderate thiamine deficiency and my grandmother was experiencing a severe acute deficiency. Both of these can be difficult to diagnose due to the perception that this is a rare condition and typically only affects alcoholics. We need awareness and I am committed to sharing this information with anyone who will listen.
The Progression to Wernicke’s Encephalopathy and Respiratory Distress
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This article was published originally on April 30, 2020.