I was married 38 years when I became sick in 2011, but the family doctor and my husband wouldn’t believe me. They thought I was lazy, fat and crazy when they shipped me off to a mental ward in a hospital. I knew I was physically sick with Cushing’s Disease, but I couldn’t convince the psychiatrist. I left my husband, got a new doctor and was diagnosed with Cushing’s Disease in 2012. I had successful surgery in April 2013 to remove the pituitary tumor. I had Adrenal Insufficiency and was put on 5mg of prednisone as my body would not produce its own cortisol.
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On Sept 27th/2016, I went into an Adrenal Crisis in an airport in Germany (I live in Canada) was hospitalized one day in intensive care, two days of regular care then I flew back to Canada and have been struggling ever since with Cushing’s symptoms. I was on two IV’s continuously in Germany for three days. I know one was prednisone and don’t know what the other was. But I do believe those doctors saved my life. However, all my Cushing’s symptoms returned and from October 2nd/2016 to December/2016, I gained 26 pounds while eating very little and should have lost weight.
I found an MD who also practices integrative and complementary medicine. He has a master’s in nutritional biochemistry. He had me do a Live Blood Cell test. Live blood analysis is controversial and not accepted in standard medical practice. However, I found it worked for me. My blood cells were all stuck together in a long chain and not free-floating like the way they should be. Based on this, the doctor said I had bad bacteria, fungus, and inflammation. He also said this is indicative of extreme fatigue. He said it was the starch in my body that created this problem. In April 2017, he put me on a low starch diet, and by July my adrenal awakened and was producing its own cortisol. I was no longer Adrenal Insufficient and taken off prednisone.
By September/2017 I was able to walk 13 km at the Toronto Zoo, dance, and golf. Most of my Cushing’s symptoms had disappeared. I got my life back.
I ate butternut squash for months, as it was on my list of approved foods, and became sick with Cushing’s symptoms again and got a burning in the vagina. I didn’t realize Butternut squash is starchy. My next blood work showed elevated White Blood Count, Neutrophils, and Monocytes. All of them are indicative of bad bacteria, fungus, and inflammation. Click here for the bloodwork report.
There was no source found for the infection. I was put on Microbin and a second level of antibiotics which did nothing. Then, I was put on cipro flax which cleared up the infection. After six months, and strict adherence to my no-starch diet, I started to recover from Cushing’s symptoms giving me a better quality of life. I also lost weight.
For three days in a row, I ate homemade tomato sauce. I got a burning in the vagina and my Cushing’s symptoms returned. ( Click here for the bloodwork report. ). Two internet sites said that tomato is non-starchy, but MedicalHealth.com says tomato is a starch. My friend, who is diabetic said if she is on a low-carb diet, she can’t eat tomatoes. My next bloodwork gave the same results as above. Over five months, while maintaining a no-starch diet, my Cushing’s symptoms lessened giving me more energy and I lost weight.
After eating a handful of cashews for 4 days in a row I woke up with a burning in the vagina and my Cushing’s symptoms returned. This has now become my indication that I have eaten something starchy so I figure out what it was. I had bloodwork done the next day. This is the result. ( Click here for the bloodwork report. ). Cashews are starchy. Again the same elevated bloodwork results as above. Antibiotics cleared up the infection. After five or six months on a strict no starch diet, the Cushing’s symptoms lessened. My energy and strength returned and I lost weight.
Looking back at my old bloodwork from 2011 when I was in the psychiatric ward, it showed the same elevated results except that the WBC went up as high as 23 and the hospital mentioned that there was no source found for the infection. Another time, in 2011, I went to the ER, the records showed the same: elevated WBC with no source of infection.
To prevent this from happening again, I found a way to test for starch in foods using iodine. See how under DIET section.
Unfortunately, I had too much white wine, what can I say I’m only human and ate barbecue sauce on 5 May/2019. Here are my results. I am back to having Cushing’s symptoms. But after six months of being back on the no starch diet, I have recovered from the Cushing’s symptoms.
I ate corn-fed steak and got a burning in the vagina and became sick with Cushing’s symptoms again. Steak is a non-starchy food. But the cow ate corn, which is starchy, and I ate the cow so, I got sick again with Cushing’s symptoms. Unfortunately, I didn’t have the bloodwork done at that time to show white blood count numbers.
This cannot be a coincidence. There is a definite pattern that can’t be ignored. Each time I unwittingly ate starchy food, I would go to the doctor and ask for bloodwork to be done.
I had a cyst on my lower eyelashes surgically removed. This cyst formed because of repeated infections. The cream the surgeon gave me Tobradex has only 2 ingredients: Tobramycin and dexamethasone. I learned Dexamethasone reduces inflammation by stopping cells from releasing chemicals that normally help produce immune and allergic responses. The Dex stops the allergic reaction I’m having from the starch and by doing so lowers my cortisol. OMG! This is why when I stop eating starchy foods for six months, (because it takes that long for the starch to break down and get out of my system) I recreate what the Dex is doing and my Cushing’s symptoms lessen and my cortisol is lower. This is why my cortisol levels became normal seven months after eating the corn-fed beef because I didn’t have any further setbacks from eating starch. I was starting to recover. All my bloodwork confirms starchy foods create inflammation. My cortisol suppresses when given the Dex Suppression Test. For me, I was given one dex pill which did nothing and my cortisol did not suppress. Then the doctor gave me six dex pills and the cortisol did suppress. After this test, I had more energy and didn’t feel like my legs would collapse.
An interesting note is that some endos have Cushies taking ketoconazole, which is used to treat skin infections and is an antifungal, to help lessen the symptoms. But Cushies have found it works for only 2 years then becomes ineffective. So the connection here is that Cushies have infection and fungus, which my bloodwork corroborates. We can lessen our symptoms when we get rid of the source of the infection. Therefore, if I get rid of the starch in my body, will I get rid of my Cushing’s symptoms and the infection? This is the question I am hoping my fellow warrior Cushies will answer by trying my diet.
Let’s RECLAIM our lives together.
Each time after eating starchy foods it takes five or six months of being on a strict no starch diet for the Cushing’s symptoms to lessen, where I have more strength and energy and start to lose weight again.
During this two-and-a-half-year period, I tried to convince my endocrinologist that Cushing’s was back because I felt the same way now as I did when I had Cushing’s. The problem was on this diet, I didn’t have a moon face, I had lost over 20 pounds and didn’t look the same as I did the first time I had Cushing’s so my endo didn’t believe it was back. He said I wouldn’t be able to lose weight if Cushing’s was back. I don’t lose weight when I’m in full-blown Cushing’s, it’s only after I take the starch out for 6 months. So he is right about that. After not being believed by my family doctor, the first time I was diagnosed with Cushing’s I swore that would never happen again. To convince my endocrinologist I have Cushing’s, I decided to take pictures of all my physical signs of Cushing’s.
Then I got an idea. I didn’t want to wait a year for my next appointment with my endo, so I went behind his back and asked my family doctor to do the 24-hour urine cortisol. These are the results. .
I got another doctor to do the 8am and 4pm bloodwork.
Both indicated Cushing’s. I took both test results to the endocrinologist and asked him to do the Dex suppression test. This is the result.
After this Dex Suppression test the endocrinologist confirmed I have a Cushing’s Recurrence.
Seven months had gone by since I ate the corn-fed steak and I hadn’t had any further setbacks, so I started to feel much better with most of the Cushing’s symptoms disappearing and I was losing weight. I convinced the endocrinologist to do this 24-hour cortisol urine test. Here are the results.
The endocrinologist still won’t believe my diet has anything to do with these results. But I am the proof this diet works. Since then, I have been slowly getting better and have walked that steep hill, golfed, and rowed in the rubber dingy. I have stopped losing hair and even have a lot of new hair growth.
This past Christmas of 2019, I drank dairy-free eggnog. I thought it was fine but woke up the next morning with a burning in the vagina. The first sign of ingesting something starchy. Then I started getting the Cushing’s symptoms back again. As proof that Cushing’s symptoms are back, days later, I took this picture of this bruise I got from the waistband of my pants and the pants weren’t even tight.
I have an appointment in January/2020 with my endocrinologist and he gave me a requisition for blood work and the 24-hour urine cortisol that I hadn’t done yet. So two days after having the eggnog, I did the bloodwork, here are the results and the 24-hour urine cortisol test. I have elevated WBC, neutrophils and monocytes as usual which means infection again and high cortisol again.
Because eggnog was the only thing different I put into my body, I knew that was what caused Cushing’s symptoms. Checking the ingredient list the only thing suspect was cane sugar. All my glucose bloodwork has come back fine, so I don’t have a problem with sugar. I eat a lot of pineapples which is high in natural sugar and I don’t eat processed sugar. Cane sugar is natural so I thought it was fine. I googled cane sugar. It turns out there is starch in the stalk and leaves of cane sugar. So here we go again!
I went to my endocrinologist for my regular appointment on Jan 20/2020. He had both test results from the bloodwork and the 24-hour urine cortisol from after having the eggnog. My numbers had gone back up to where Cushing’s might be suspect again. I explained about the eggnog and the Dexamethasone. I could see in his expression a lightbulb went on for him. He was curious. He asked questions and then told me to keep on my no-starch diet. He gave me the paperwork for the 24-hour urine cortisol to be done in 6 months from now. He wants to see if after taking all starch out of my diet for 6 months if my cortisol will be in the normal range again. OMG, I am so excited. I now get the chance to prove or disprove my theory!
It has now been six months of being on a no starch diet and I have now gone for the 24-hour urine cortisol test. Here are the test results. I will have a phone apt with my endo on June 9th to go over these results.
Spoke to my endo. I am so disappointed. My endo now tells me I have cyclical Cushing’s. This is NOT cyclical Cushing’s because I am able to control my cortisol levels through my no-starch diet.
I had another slip-up. I had homemade pesto sauce. I didn’t realize it had pine nuts in it which are starchy. I got the burning in the vagina and went for a 24-hour urine cortisol test. Here is the result .
It usually takes 6 months before I feel better. But after 4 months my Cushing’s symptoms disappeared and I felt better because there is very little starch in pine nuts. There is a 1.43-gram amount of starch in 100 grams of pine nuts.
In fact, I was so much better, over a 14 day period, I went golfing 10 times playing 18 holes a day. If my cortisol was still high I would not have been able to do this. I started getting a lot of back pain and went to the chiropractor in between golfing. I was in a lot of pain but pushed through it because I could golf again. Then on the 15th day, I got out of bed and my leg collapsed out from under me and I went to the floor. I was in tremendous pain. I went to the doctor and chiropractor. My knee, leg, and baby toe went numb and were swollen. It was my sacroiliac. I damaged the tissue. My Cushing’s symptoms came back again in full force. I was seeing the chiropractor. I tried a new procedure from another doctor where they did electric shock therapy. He explained that the brain had lost its connection to the injured part of me. He said the electric shock cleared the path from the brain to the injured part to heal it. After 3 treatments my Cushing’s symptoms were worse so I stopped the treatment. I had the usual blood work and 24-hour urine cortisol tests done. After peeing in the jug for 24-hours, I took it to the lab and had the 8 AM blood work done. An hour had gone by since I last peed in the jug and had the 8 AM bloodwork done. I went back again at 4 PM on that same day. Here is the result. The bloodwork showed normal with no elevated WBC or neutrophils because I had not eaten any starchy foods. Also, note the elevated Fibrinogen which is indicative of tissue damage from my back. Here is the result. Because of this, I feel it rules out the idea that this is cyclical. I am controlling the cortisol level through eating or not eating starchy foods.
But the strange thing is that the 24-hour urine cortisol was just the opposite with high cortisol, but yet both tests were done an hour apart on the same day. Here are the results.
But these last results couldn’t be a mistake because, over a 14 day period, I was able to golf 18 holes for 10 days. If Cushing’s was back there is no way I could golf even one hole or swing a club. Then after the injury, all my Cushing’s symptoms were back and I could barely walk again and had no strength or energy. The test confirms Cushing’s is back. Yet my 8 AM and 4 PM draw show normal cortisol. How could this happen? Does the cortisol in the blood reflect what is happening in the pituitary? And the urine cortisol reflects something different? My MD did follow-up tests four months later. Here are the results.
I have learned that by avoiding starchy foods I am able to lower my cortisol. Dexamethasone can suppress cortisol. Dex stops allergic reactions. By eliminating starch I stop an allergic response.
A recent study was done in Aug/2020 by Muraca et al, published in the journal Diabetes/Metabolism Research and Reviews titled: Hypercortolism and altered glucose homeostasis in obese patients. This study found: Abnormally high levels of cortisol in the urine seem to be associated with alterations in blood sugar metabolism in obese patients (http://doi.org/10.1002/dmmrr.3389). . I have found starch raises my cortisol levels making them abnormally high. Starch metabolizes into sugar. There is a connection here between this study and my findings through my own experimenting with starchy foods that should not be ignored. On Sept 12/2020, I sent out an email to the originators of the study to report my findings with starch in hopes that they would do a study on starch. The problem is that this group is from Italy and because I only speak English I had to use google translate. I also sent a link to my website. To date, Oct 02/2020, I have had no reply.
My family doctor thought this white patch in my mouth was thrush, then ruled that out and didn’t know what it was. He gave me a referral to an ENT in 7 months.
While on the Cushing’s Support Facebook page I saw a post by Jenifer Williams which explained what the white patch in my mouth is and why it happens. It is called Leukoplakia. It’s caused by certain meds or inflammatory or gastrointestinal conditions. I googled it and learned it can also develop in the female genital area. OMG! This could be why I have a burning in the vagina after eating starchy foods that trigger inflammation and infection.
I have learned Cushies have low estrogen. With lowered estrogen, the vagina has no protection from infection.
Finally, I have my answers for why I get the burning in the vagina every time after I eat starchy foods because they cause an infection!
Jenifer Williams has an amazing website that explains the medical aspects of Cushing’s. I would highly recommend it. Check it out at www.coulditbecushings.weebly.com.
My sister has a horse that became huge in the belly, struggled to get up, and was lethargic. The Vet told her the horse had Cushing’s disease. She was told not to let the horse eat grass because it has sugar and not to give the horse feed that has starch in it. After doing this for 3 months the horse recovered fully. According to the website forageforhorses.com, “Cushing’s is a non-reversible disease and can progress if not managed. Horses with Cushing’s are more prone to insulin resistance and high blood sugar, feeds and forages with higher non-structural carbohydrates (NSC) should be avoided. NSC’s are what make up the starches and sugars in your horse’s feed and forage. Sugar from forage and starch from concentrate does not have the same impact on hindgut environment” – meaning digestion. “Starch-rich concentrates impair the hindgut environment after feeding which sugar-rich grass does not. In the small intestines, starch is rapidly degraded to glucose and absorbed into the blood. Sugars are water-soluble carbohydrates – glucose, fructose, sucrose, and fructans. Starch-rich concentrates have a higher risk. Non digested starch produces lactic acid which results in drastically decreased PH in caecum and colon.”
Horses with Cushing’s have the same symptoms as I do with Cushing’s. I have been researching this further to discover that the molecular structure of the steroid hormones is identical for humans and horses. Cortisol is a steroid. Inflammatory conditions in adipose tissue (body fat) and effects on the metabolic and biochemical process show similarities between both species. The condition of fat cells in horses and humans is widely comparable; therefore, a transfer of scientific knowledge from humans to equids might be possible. Both species have insulin resistance caused by poor insulin signals by adipokines and cytokines. Cytokines are released through the adipose tissue and send messages between cells. In horses cytokine signaling 3 is able to inhibit insulin signaling pathways in the adipose tissue (body fat) and liver. This must be the same thing that is happening to me.
When I eat starch my bloodwork shows elevation in white blood count, neutrophils and monocytes always. Occasionally, my C-reactive protein and fibrinogen become elevated. Horses with Cushing’s also have shown elevated neutrophils. Horses with fatty degeneration of the liver have elevated synthesis of C-reactive protein, fibrinogen coagulation factors, and angiotensinogen (which is involved with blood pressure control). Laminitis (Cushing’s) in horses might be the counterpart to central vascular dysfunction in humans. All this information about horses compared to humans was found on the following sites. serenebynature.com/hormones-in-humans-and-horses/ and ncbi.nlm.gov/pmc/articles/PMC4068110/Summary. All this evidence in horses lines up perfectly with all that I have discovered and concluded that my body cannot tolerate starchy foods. By eliminating starch, I can recover from the symptoms, but NOT the disease.
I believe I have Cushing’s for life, but I can control the symptoms and therefore my quality of life through my diet like the horse, however, I cannot sustain it. There are too many variables.
I took a supplement Serrapeptase not realizing the first ingredient is brown rice flour and my Cushing’s symptoms returned. Here are the results.
I ate homemade curry chicken and never seemed to have a problem with it before until I decided to add 4 times the ginger I normally would. It made me nauseous and I had severe stomach pain. I googled ginger and found out it is 50% starch. But I didn’t understand why I didn’t get the usual vaginal burning that I do when I eat starch. I googled the medicinal purpose of ginger and learned it is a very strong anti-inflammatory. It was controlling the infection. However, after a few days, vaginal burning started happening. I am assuming that it took that long to flush the anti-inflammatory benefits of ginger out of my body. After eating the ginger, I did a 24-hour urine cortisol test. Here are the results.
Citrus acid has been created by a scientist using a black mold from GMO corn syrup. If I eat something with citrus acid then my Cushing’s symptoms return. There are too many chemicals in foods that could include hidden starches that would cause further setbacks for me to be able to control this. My endocrinologist says I can’t keep doing this because my cortisol levels are too high. He has recommended I get both my adrenal glands out.
On January 25th, 2022, I had both my adrenal glands removed. The endocrinologist said the withdrawal was going to be horrid. He was right. I had extreme stomach pain, nausea, my eyes went blurry, extreme weakness, inability to keep my body upright, heavy breathing, became incoherent, unable to speak, and would shake like I had a seizure. After the first week, the nausea and stomach pain went away but all the other symptoms continued in sporadic episodes. A year and a half after the bilateral adrenalectomy (BLA) I have continued to have 19 of these episodes. So, I know these are not withdrawals. The withdrawal symptoms were probably only the nausea and pains in the stomach. Out of these 19 episodes, 6 happened in the hospital and 1 was in the endocrinologist’s office. No one knows what these episodes are. They mimic an adrenal crisis but are not. The endocrinologist said it was not an adrenal crisis because my systolic BP did not go below 100. What the specialists have found out so far. The Respirologist said the heavy breathing was not an asthma attack. It only mimics one. It is from extreme fatigue. The family doctor tested me for Pots. That was ruled out. But he said with Pots when BP is taken from lying to standing the BP goes up 30 points. When this was done for me my BP went up 20 points. He said his treatment for this would normally be prednisone, but because I was already on it, he didn’t want to give me anymore but referred me to my endocrinologist who has given me 3 upright renin tests. The normal result is between 83-979. Three times my results come back less than 83, unfortunately, it doesn’t give a number. I must use a walker now and have little strength and energy.
I’ve got a referral to The Boris Clinic at McMaster University in their Endocrinology Department. I will be seen by multiple “ologists” who will do simultaneous testing and review all results as a team to figure out what’s happening. My appointment is for 13 Dec/2023.
I am hoping one day I can convince the scientific world to listen to me and believe what I have experienced so studies can be done to investigate my starch theory and the effect it has on my body.
Ten to fifteen people per million have Cushing’s disease. This means, as of March 2020, with a world population of 7,800,000,000 people, 7.8 million people have Cushing’s disease. With Cushing’s one has elevated cortisol levels. The diabetes study I quoted earlier concluded that people with diabetes have elevated cortisol in the urine. Doctors found Covid 19 patients had elevated cortisol. If starch raises cortisol levels as I have shown, then all of these people will benefit by eliminating as much starch from their diet as possible.
The medical community needs to realize: The whole is greater than the sum of its parts.
A doctor looks at test result numbers that are either too high or low and determines how to change those numbers to get the body under control. Many doctors don’t look past the numbers to consider WHY this is happening. I look at those numbers and try to figure out the information that is representative of them and how that information fits into the story of my life. Then I try to figure out WHY this is happening. and how my body is responding to elicit these highs or lows. For example, The high WBC, neutrophils, and monocytes mean infection and inflammation. What are the signs? The burning in the vagina and my Cushing’s symptoms return. When does this happen? After I eat starchy food. Why does this happen? According to the Live Blood Cell test, it’s because my body can’t tolerate starch. I learned to listen to my body and trust my instincts.
Follow me on this journey to a better quality of life to see how long it takes this time to get back to good health and lose weight. If enough Cushies try my diet and have the same results, the medical community will have to believe us or at least be curious enough to do some studies based on my theory.
