Hospital Admissions, Adrenal Insufficiency and Cortisol Replacement Medication
Well, as many of my friends may have noticed, I have had a number of recent admissions to hospital. In fact, I’ve been very unwell and unable to do much for well over a year and since then many people have asked what’s wrong? What happened? Why are you so ill. Here is my answer…
So…I began to feel really unwell in February 2013, not long after John and I got engaged. I got weaker and more tired, exhausted and generally couldn’t do too much physically without feeling very ill. I didn’t know at the time but my adrenal glands were slowly failing. My GP was pretty much useless and kept saying, maybe you have depression that’s making you tired. I tried to explain I was not depressed rather I was at the happiest point of my life about to be married to a wonderful man and very content.
By August 2013, and only a few weeks after John and I married, my Adrenal glands stopped working completely. I collapsed and was rushed to hospital with dangerously low blood pressure. I was given an IV drip and after several days was diagnosed with Adrenal Insufficiency.
After getting Diagnosed I had several questions such as what is Adrenal Insufficency? What causes it? Can it be cured? Will my health improve? What is the treatment?
I found out that Adrenal Insufficiency is quite a rare illness.
The Adrenal glands produce the Steroid Hormone known as Cortisol and in order for the body to function properly and cope with everyday physical stresses, such as daily activity, movement, viruses and bugs, the body must produce whatever Cortisol the body requires.
As my body no longer produced Cortisol, I became “Steroid Dependent” meaning I need to take oral Steroids (Hydrocortisone) several times a day for the rest of my life to ensure I do not collapse, go into heart failure and die.
Usually the body produces cortisol overnight so the body is ready to get up and go in the morning. Someone with my illness however will wake up with weak aching muscles, dizzyness and be unable to stand up or walk for several hours until the morning dose of steroids begins to work. Theoretically the cortisol will then be replaced every 4-5 hours with further tablets and I would then be able to go about a normal day and my body cope with the every day physical stresses I experience.
However….. life is not always that simple.
When one is first diagnosed with the illness, it can take time to work out just exactly how much daily steroid is required. The amount varies based upon one’s weight, one’s metabolism and any other illnesses or stresses the individual has. For example for me, I needed a dose of steroids to cope with my weight, metabolism and the everyday physical stress caused by asthma, a condition I have had all my life.
So I was started on 20mg of steroids, which theoretically should have helped my body to cope with everyday physical stress. This was ideally the correct dose of medication for someone weighing 16 Stone, however with daily doses of Steroids comes weight gain and the doctors clearly didn’t factor in the stress of daily asthma and never bothered to test how fast I metabolised the cortisol.
So whilst I waited two months to see an Endocrine specialist, I suffered hypo-adrenal symptoms daily due to my cortisol levels being under-replaced.
During that two months I gained two stone in weight (due to being on steroids and being bed bound) which resulted in being even more under-replaced as the more you weigh the more medication is needed.
When I finally saw the Endocrine specialist in November 2013, they were more bothered about working out the cause of my illness, whether I had a brain tumour, heart problems or Addison’s disease, (where the adrenal glands simply fail).
The working out of medication amounts was left to an Endocrine Nurse specialist. (Who was not much of a specialist at all). For months I tried to get the Nurse to increase my medication amounts and he continued to say I was on the correct amount. Once I pointed out my weight gain to the Endocrine Nurse, my medication was finally increased to 25mg to match the fact I was now 19 Stone. (This still was not enough medication as I still suffered from Hypoadrenal symptoms)
By January 2014, I had unknowingly developed Vitamin D deficiency due to being unwell, indoors and out of the sun . On top of the Hypoadrenal symptoms of fatigue, aching muscles, dizzyness, weakness, Nausea and headaches, I developed excruciating bone pain. Every bone in my body ached from my feet and hand bones to my shins, skull and eye sockets. I was in severe pain. By this time I was using a wheelchair to get to appointments and make GP visits as I couldn’t physically stand up.
At my next Endocrine appointment in February 2014, the specialists had determined I had no brain tumour or heart problems and determined I had idiopathic or unexplained adrenal failure. However due to the Bone pain and Nausea, I was tested for other illnesses.
By March 2014, the results had come back that I was had dangerously low in vitamin D. Due to a lack of Vitamin D, my body was unable to absorb calcium and so my Parathyroid was stealing the calcium from my bones causing Osteomalacia. I saw a rheumatologist who gave me a years worth of Vitamin D in one shot and prescribed Vitamin D supplements for life.
By June 2014, my bone pain had gone completely. My Vitamin Levels had returned to a healthy range, and the parathyroid back to normal. My Dexa Bone Scan revealed the bones were strong again and thankfully I had not developed osteoporosis. I now get my Vitamin D tested every few months.
In May 2014 I had a third visit to my endocrinologist, I had informed him of the improvements to my Vitamin Levels but was still unwell on a daily basis due to feeling “under-replaced” with Cortisol. I was also now 20 and a half stone in weight and although I wasn’t aware at the time “theoretically” my daily dose of cortisol should have gone up to 30mg but the Endo never even looked at my change in weight and I was told to face the fact I probably had ME “chronic fatigue Syndrome”.
In July I was diagnosed with ME (which I believed at first) but now think is not accurate as Hypoadrenal symptoms and ME symptoms are very similar.
In July 2014, I was suffering from a chest infection and asthma.
When someone on steroid replacement therapy catches a virus, or has a stomach bug, is on antibiotics or has another major physical illness, or physical pain, the daily cortisol amount should be doubled for three days or until the illness is gone.
If your normal daily amount of medication is under-replaced and you get sick and double your dose, then the double dose will also be under-replaced causing a drop in blood pressure, collapse and hospital admission.
In May I was admitted into hospital with low blood pressure (caused by asthma/chest infection)
In July I was admitted into hospital with low blood pressure (caused by asthma)
In August I was admitted into hospital with low blood pressure (caused by a virus)
In late August I was admitted into hospital with low blood pressure (caused by a sore throat/cough)
ME would not cause the above to happen. Being under-replaced in Cortisol would.
In May, July and the first August admission, after having the initial emergency steroid injections, my medication was tripled. for a few days and so I got well before going home and dropping my medication down to the single and “not enough” dose again.
On the last admission a different Doctor only doubled my dose. As my daily dose is under-replaced I was not getting better on the double dose as it was not enough and my blood pressure was staying low..so they thought there was something else wrong with me.
It was finally determined after four Iv bags of saline that I was not getting enough Cortisol. The Endocrinologist listened to me and said I probably needed to be on 30mg of steroid a day. It turns out this is the correct “text-book” amount needed for my current body weight and hopefully in a few weeks I should be feeling a lot better.
The only option now is to continue on this new dose and record my symptoms.
In 5 weeks I get to see the Endocrine specialist in Preston who can arrange tests to check exactly how much cortisol my body requires and possibly improve the timing of when I should be taking the steroids.
I have been eating healthy and doing weight watchers, but each time I have an emergency IV of steroids, I gain eight pounds which takes about eight weeks of dieting to shift…If I had not been eating healthy and losing weight over the last two months, Id be so much bigger right now.
I am hopeful that this new change in Medication will soon start working for me and if it is not yet right the Endocrinologist specialist will work it out in the coming months. Each hospital admission is one step closer to having a semi-normal life.
The key focus should be to make sure I’m on the correct daily dose so I’m well each day and can double my dose when needed to avoid an adrenal crisis and another hospital admission.
Angela Milnes xx