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.
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 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 the 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.
In April 2017, I started 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 Sept/2017 I was able to walk 13 km at the Toronto Zoo, could 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 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, RDW, Neutrophils, and Monocytes. All of them indicative of bad bacteria, fungus and inflammation, which referenced the results of the Live Blood Cell Test I did a year earlier. My Creatinine was high indicating mild to moderate decreased kidney function. Click here for the bloodwork report.
There was no source found for the infection. I was put on Microbin and a second level 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 the 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 think this shows up because I have no starch in my body so when I eat a starch it is reactive. I think if you always eat starch your body is desensitized and therefore may not react to produce elevated bloodwork.
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. Dex fights inflammation. When we get rid of inflammation, our Cushing’s symptoms lessen. All my bloodwork confirms starchy foods create inflammation. Our 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.
According to the Live Blood Cell Test, my blood cells were all stuck together in a long chain and not free floating the way they should be. Based on this, the doctor said I had bad bacteria, fungus and inflammation. He also said this was indicative of extreme fatigue. My doctor told me it was the starch in my body that created this problem.
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. He told me that was 3 years ago and I couldn’t possibly remember how I felt after 3 years. I will never forget how I feel with Cushing’s. After not being believed the first time I was diagnosed with Cushing’s, I swore that would never happen again. Well guess what? It happened again. The endocrinologist wouldn’t believe me and test me because I didn’t look the same as I did the last time, I had Cushing’s. And I had lost over 20 pounds. He said I wouldn’t be able to lose weight if I had Cushing’s. I don’t lose weight when I’m in full blown Cushing’s, but when I start to recover through the diet and after about 6 months of being on it then I start to lose the weight. So, he is right. He doesn’t believe anything I say. He books my next appointment with him in a year’s time. To convince him I have Cushing’s, I decide to take pictures of all my physical signs of Cushing’s.
Then I got an idea. I didn’t want to wait a year to see the 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. He didn’t offer any suggestions for why my cortisol level is now 176, within the normal range, after confirming that I have a Cushing’s Recurrence.
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. Finally, he was listening to me. I think he wanted to know WHY he was getting different numbers than he expected. 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 in my endo. It’s like he is not listening or believing anything I say. 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 I was able to golf 18 holes for 10 days. If Cushing’s was back there is no way I could do this. 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 8AM and 4PM draw show normal cortisol. How could this happen! Could the bloodwork confirm that by taking out the starch the cytokines and chemokines did not spur CRH to stimulate the ACTH to produce cortisol? I have asked my endo to do an MRI.
On Facebook through a Cushing’s site, I posted my theory about lowering cortisol through my diet. An Admin person responded with this:
Janice, nothing has been “proven” re your diet and lower cortisol. It is interesting anecdotally, but not scientific in any way. Correlation does not equal causation. Have you had comprehensive allergy testing? Do you know you are allergic to all starchy foods? Regardless you are not “duplicating” what Dex does. If you are allergic, you are avoiding letting an allergic process start. Dex in the context of allergies stops an allergic reaction in the process. Foods can’t do that.
Someone else responded to this post
She is describing the avoidance of a mast cell attack and yes this WILL keep your cortisol down. The foods she is reacting to are being avoided and thus not secreting the cytokines and chemokines that spur CRH and thus cortisol will be used and not produced.
I looked up CRH
Corticotropin- releasing hormone. Its function is to stimulate the pituitary synthesis of ACTH. Cushing’s happens when a benign tumor in the pituitary or adrenal gland produces ACTH hormone which stimulates the adrenal gland to produce too much cortisol. Could CRH be the starting point of Cushing’s????
With Mast Cell Activation, histamine releases after an allergic reaction. I have an allergic reaction to starch which causes inflammation, fungus, and bad bacteria. Bacterial growth can cause histamine overproduction.
I got an apt with an immunologist who said she didn’t believe she could help because I didn’t exhibit the usual allergic reactions and she thought I should see an infectious disease specialist because of my frequent infections. When I asked about Mast Cell she was quick to cut me off and dismiss it. Back to square one.
A recent study was done in Aug/2020 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. 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.
An interesting note: Ketoconazole is often used to treat Cushing’s. It is also used to treat foot fungus. I have problems with fungus and my nails occasionally turn yellow from the fungus.
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 burning in the vagina after eating starchy foods that trigger inflammation and 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.
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 means 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.