Common symptoms of Cushing’s
Dear Family and Friends,
I’m writing this letter to help inform you of Danielle’s diagnosis and recovery process, so you have suffice information on the situation. I felt compelled to write something in order to help educate those who care, so they have a better understanding. Being a rarely diagnosed disease, many are confused as to what the disease is, how it affects the body and the potential treatment.
Cushing’s is a rarely diagnosed endocrine disorder identified by hypercortisolism. Cortisol is a steroid hormone produced by the adrenal glands which are located on top of each kidney. Cortisol when released into the bloodstream can affect and help many parts of the body. Some of these include: your body’s response to stress or danger, increasing of your body’s metabolism of glucose, control of blood pressure, boosts immunity and reduces inflammation. Cortisol is used by the body as a natural response to perceived threats. You may have heard the term “fight or flight” which means the instinctive physiological response to a threatening situation, which readies the body to either resist forcibly or run away. A way to describe a scenario of fight or flight could be, you are sleeping in bed home alone and awoken by the front window of the house being smashed in by an intruder. Now imagine how you would feel? The fear, the anxiety, the stress. Your body carefully regulates the hormones to help you deal with the situation which includes physical changes like increased heart rate and blood pressure. Everyday examples of those who would have higher than normal levels of cortisol within NATURAL RANGE to deal with stress, would include athletes, pregnant women, alcoholics, people who suffer panic/anxiety disorders and those who are malnourished. Cortisol itself is not bad, as you can see it is vital for survival and regulates many functions of the body. But the OVERPRODUCTION of cortisol for a PROLONGED time is detrimental to the body.
People diagnosed with Cushing’s Disease/Syndrome live life with excessive cortisol production often caused by a hormone-secreting tumour. Danielle’s is located on the pituitary gland which is in the brain. This leaves her body in a constant state of “fight or flight” which wreaks havoc on the body. Breaking down major systems including musculo- skeletal, cardiovascular, endocrine etc. Symptoms vary, which often is the cause of misdiagnosis. The most common symptoms include rapid, unexplained weight gain around the stomach, face and neck, a hump on the upper back between the shoulder blades, muscle wasting, premature osteoporosis, poor wound healing and easy bruising, severe fatigue, depression, anxiety and emotional problems , sleep disorders, high blood pressure, high blood sugar (diabetes), menstrual irregularities, hair growth on the face, acne, facial flushing, balding, low sex drive, infertility, vision problems and severe purple stretch marks. Danielle has experienced every symptom except the large purple stretch marks. There are also other symptoms I have not mentioned that others may experience due to the fact it controls many areas of the body. For those of you that have seen my YouTube video I made when I first came across Cushing’s Disease (the video is posted on YouTube called “MY WIFE HAS CUSHINGS DISEASE), you can understand why I had a breakdown when I went to tell her I found out what she has. To see her experience all these symptoms for years has been difficult, so I can only imagine how she feels.
You can see the image I attached to this letter. It illustrates a typical Cushing’s patient. You can grasp the terrible effects this disease has on the body. This disease is cruel, it’s chronic, debilitating and disfigures the body ruthlessly. I cannot even fathom how Danielle has battled for so long and has done so with staying positive around others in the outside world. Personally this is the part I struggle with, people stopping and really thinking about how this affects someone mentally and physically.
Working in health and fitness with personalised coaching, I know how much our appearance plays on us mentally. Think about it, particularly women. They spend hours on their makeup, hair, nails, skin and clothes selection. Why? Because they want to look their best version of themselves. How many women do you know that get completely depressed because they put on a few kg? And I literally mean a few, the everyday person wouldn’t even notice. But that skirt no longer fits as good, or I look bloated, etc.? But that depression is just from weight gain alone. What about things like acne? Or their hair is falling out from severe stress? It shatters a woman’s confidence. Perhaps they want a child but cannot fall pregnant. We shouldn’t be so naïve to what people are experiencing in life. Passing little comments or opinions can really break someone. People are fighting battles we know nothing about. If we invest time in people we can learn about these battles and be better equipped to support and encourage.
If you are reading this and think well “there’s someone else worse off”, whether you’re thinking that about Danielle’s situation, someone else’s or even your own, I cannot stand this mindset. I know it stems from good intent and trying to help a person see positives in a situation, but this mentality does more damage than good. Here’s why.
If you say these words to someone else or even yourself, the person suffering already knows this! They would probably rather their problems than someone else’s doing it tough. Such a comment is not helpful. The words minimalize what a person is going through, making out their current situation is not really that important. It causes people to think their personal problems are not justified and begin to question if the emotions they feel are genuine and even warranted. This in turn leads to discerning they are not worthy of compassion and the HELP they need because “there’s always someone worse off”. It can come across as saying “just get over it” and this stops people opening up beginning to bottle everything up internally and the cycle of self-hate and blame to commence. Now I’m not saying we should sit around and be a negative Nancy’s all day, we should always try our best to be positive and count our blessings. But, this does not mean being ignorant of the issues we face. Masking emotions, distracting ourselves and sweeping things under the rug doesn’t do us any favours, nor the people around us. If we don’t even have the mental tools to try heal ourselves and continually grow, then we will have very limited tools and resources to help those around us. What is the problem teaching us? How will this make us stronger? What personal growth have we made from dealing with such a situation? Has it taught us about changing perception, expectation, and compassion? So many lessons we can learn, but it takes honest self-assessment and desire. Desire to help yourself and the desire with ACTION to help others. The reason I’m delving into all of this is because I watched Dani for years pretend she was ok. She was trying to be brave and felt like she wasn’t deserving of help or even just talking about it because she wasn’t on life support and about to die. Trying to be positive but not actually dealing with the negatives.
My heart bleeds for those in the Cushing’s community. Imagine the feelings of hurt when you become unrecognisable to those around you. Imagine the heartache of looking into the mirror and feel like you are looking at a stranger. People assuming you’re pregnant. The preconceived or uneducated thoughts of those who knew you before, thinking somehow that you have let yourself go. No amount of persuasion can make most think differently including doctors. Feeling increasingly sick physically and mentally but almost every doctor thinks you are just depressed, or have the baby blues or just have to diet and exercise more. People suggesting an adjustment in lifestyle, try this natural remedy, or change of diet. Even though you are living a healthier lifestyle than most. You are dealing with all of this combined with increasing fatigue and depression and begin to become socially isolated because of your drastically altered appearance that makes you no longer feel like yourself. You have lost your identity. Lost a passion for life and what you were able to do. You can no longer work. You were the strong girl at work who did all the heavy lifting and now you struggle to get through a regular day. You were the creative mind and now cannot even process everyday menial tasks. This goes on for years only to discover you have a rare disease caused by a brain tumour.
Fatigue due to muscle wasting makes simple everyday tasks very exhausting. It contributes to becoming socially isolated because now while your physical appearance has dramatically changed you also don’t feel yourself due to a lack of energy. No way on earth would Dani ever want this or compare the diseases but if I said Dani had CANCER you would have a frame of reference to understand what she is going through. There is such limited public awareness that we are always left to describe the effects of the disease from a blank slate and the limited understanding from those around you can be disheartening. By even writing this letter, it is raising awareness and who knows, it could help someone in the future.
The surgery is HIGHLY COMPLEX and to be honest scares me. It is brain surgery around many sensitive areas. The good news is there’s a chance of remission from Cushing’s in the hands of a skilled neurosurgeon. But unfortunately, the long term remission is only 56%. That means 44% of people with Cushing’s will require a second surgery and sometimes even a third surgery because symptoms return. Radiation is slow and limited and if all else fails there is life changing procedures like removing the entire pituitary gland or adrenal glands, where a variety of synthetic hormones have to be delicately balanced and taken for life. If Cushing’s is not treated it will lead to a SHORT LIFE EXPECTANCY. Danielle will have to be monitored for reoccurrence for the rest of her life.
After surgery the recovery period can last for months and even years. Because the tumour had taken over the body’s production of cortisol, the pituitary gland and adrenal glands have been inactive and require time to reboot as it were and learn to function normally again. Until this happens, synthetic steroids are taken, or else the risk of an adrenal crisis can happen and this quickly becomes life threatening. It is critical cortisol levels are closely monitored over this period of trying to wean off steroids. Rarely, some people’s pituitary and adrenals never function again properly and require taking steroids for life, just for the body to be able to perform basic tasks.
The actual physical recovery from surgery can be quick, but the withdrawal from high levels of cortisol can be often lengthy and a very painful process. Cushing’s breaks down muscle and bone and whilst there is an overabundance of cortisol the effects of such breakdown cannot be fully felt. Cortisol has an anti-inflammatory action thus blocking the pain, however during the weaning process the true destruction to the body caused by Cushing’s can be felt and becomes painfully evident.
The physical pain experienced while weaning from cortisol has been described as worse than weaning from Heroin. When cortisol levels plummet low the body experiences extreme fatigue like having a really bad flu. Weakness, exhaustion, nausea, headache, vomiting and mental confusion are not uncommon. People who take replacement steroids must always carry an emergency injectable dose in the event of life threatening adrenal crisis.
People diagnosed with Cushing’s long to return back to their former life and to be normal again. It’s an unusual disease in that whilst you don’t want Cushing’s, most people experience a sense of relief after being diagnosed and having a treatment plan. This is because they’ve spent years and years of not knowing what is happening to their body and health practitioners providing no answers. Sadly, not everyone will return to their previous health. This is due to factors such as how long they had the disease, the severity of the symptoms and their age. It is an upsetting reality, resulting from long term hypercortisolism.
The best support you can give some diagnosed with Cushing’s is to believe them if they choose to open up to you. Understand this is not a result of mentality or lifestyle. This is not a manufactured illness and the difficult recovery is genuine. Recognise their boundaries. Ask questions about the disease and learn. I know Dani might not want to, but I’m more than happy to explain to anyone who wants to know more. Often those suffering have become experts on the disease just in order to survive and find pathways to diagnosis and treatments. Even many doctors don’t know much because of it being rarely diagnosed.
I don’t know what is in store for Dani after surgery, but she has been remarkable all these years, particularly raising a child. It gets me emotional every time. We always try be positive and she doesn’t want to be that “sick person” who wishes to talk about sickness. We are strong believers that the wrong mindset and thought patterns make sickness much much worse. I have witnessed so much anecdotal evidence to confirm this in my life time. If you have made it this far reading, then thank you. Thank you for caring about us and your concern. Hopefully this letter has motivated you in some way to hear and help those around you. Invest in relationships and the returns combined with personal growth will be priceless.