Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
It's been a battle ever since this began. Forewarning, my post will be long, and it will likely be difficult to understand in some areas due to my lack of concentration and mental cognitive abilities, but I'll get to that later.
So I will start off with a bit about me. I'm a 21 year old female, currently in Ontario, Canada. I have been diagnosed with Major Depression (2011), Generalized Anxiety Disorder (2011), Post-Traumatic Stress Disorder (2011), Migraine Headaches (unsure of diagnoses date however had spread throughout childhood and grew more frequent in my adult years), Grave's Disease (2013), Hyperthyroidism (2013), Hypothyroidism (2013 due to Radio-Iodine treatment). These are my fully diagnosed conditions, however I have other conditions that are currently in question.
I have multiple tiny lesions in the white matter of my brain, technicians indicated possible early onset white matter disease. I also have a large variety of neurological symptoms consistent with Multiple Sclerosis, so though my MRI's of my brain show lesions they aren't in the area required for it to be MS, I am still awaiting further MRI scans of my spinal cord for other lesions for more possible evidence. Though I haven't been diagnosed, the MS clinic agreed to take my case for treatment this coming August.
Previous serious illnesses or surgeries would only consist of two incidents than I can recall off-hand. I had a breast reduction surgery (2014) with little to no complications, I believe I may have had a small infection, but nothing of concern, I believe I was on antibiotics. The other serious illness that I had was when I volunteered at a local wildlife rehabilitation centre. I had just had my wisdom teeth removed and was given a preventative antibiotic for any possible infections, well I got an infection anyways. So onto a second type of antibiotic to get rid of the current infection in my surgical wounds. While at the wildlife centre, I was working outside feeding the squirrels, a bee stung me and bacteria got into the wound. The wound got swollen and red and I was concerned it was an allergic reaction so I went to the hospital. While in the hospital they said the sting-site had gotten cellulitis, and I received my third type of antibiotics within a 1-2 week time span. Unfortunately, the bout of illness didn't stop there and due to me visiting the hospital after being on so many antibiotics, I contracted Chlostridium Difficile which put me back in hospital with blood pressure ratings that seemed to read too low to be understood on the machine. I was pretty close to falling into a coma or my heart giving out on me. Scary stuff, but I recuperated!
So, I'll begin into the tale of my experience with what appears to be, and with Internal Medicine support, I may have Addison's Disease. I know the disease is rare, and the symptoms are very non-specific, however, everything clicks. Every symptom. Anywho, back on track..
It was about February 2nd or 3rd and I began to get diarrhea, it was happening 10-12 times daily. Two days later, still suffering from diarrhea, the vomiting began. The vomiting began, and it didn't stop. It was constant. For the first few weeks I could still eat and drink somewhat, but that has diminished as my condition has worsened. I went into the hospital five times within the past two months for dehydration, vomiting, diarrhea, severe migraine headaches, fainting, low blood pressure and quite a low pulse.
My first few visits were very uneventful. I mean, they gave me IV fluids, and gave me migraine medications, and ran basic bloodwork, but they essentially ruled my symptoms out to anxiety, or marijuana affected usage (however, I had been smoking very low quantities at the time, and I generally don't smoke a whole lot to begin with). I went home and went about life as much as I could, but I could feel myself becoming more and more unwell.
I again fell into a vomiting, diarrhea, fainting spell and I was rushed to the hospital hardly able to speak from dehydration and low blood pressure. Finally I met the doctor who gave a damn. He looked at my charts and said "What the hell were they thinking?" and asked me if they did stool samples, because they weren't showing in the record system, I told them no, they didn't. He asked me if they did anything more than basic testing (ECG - yes, abdominal x-rays - yes, in depth blood tests - I didn't know, MRI's - no), if they had even considered disproving there could be something underlying, after - it was now about 3 weeks into my illness.
He started to run further blood tests, that were more in depth and contacted Internal Medicine to take over my case as he truly believed there was something deeper than just simple anxiety or marijuana usage. He was excited to find the blood results come back with some abnormalities pertaining to low cortisol levels. I can't remember what the exact figure was, but the initial ER doctor was ecstatic at the find and said he may have found the reason I've not been well for quite a long time. He said not to give up hope and give in to my anxiety and depression as he believed the mental health events were possibly due to this mystery illness.
He met with my assigned Internal Medicine doctor, who actually high fived him and said "Good find." It gave me so much hope that I had been missing, seeing my doctors being so excited with their findings and enthusiastic that if they know what it is they can treat it. It made me feel so much better.
I was rotated off of the ER doctors list and onto the Internal Medicine doctor's, as he had a waiting room packed full of people needing him. I gave him a teary thank you and good-bye as he finally gave me hope when, at that point I was on the brink of suicidal thoughts as I wanted this illness to end. I know it was only 3 weeks at the time (approximately February 28th at this point) but it felt like it was never-ending and I just was getting ready to want it to stop. I had stopped eating solid foods at that point, and was trying to drink water when I could and drinking boost or ensure, as well health drinks that contained multiple vegetables so that's where I got most of nutrition when I could keep it down.
So I was under Internal Medicines care, and they did a blood test, at start time, 10 minutes, 30 minutes and then 60 minutes. I don't know the name of the test they conducted, but the doctor returned with the head of his department to show his case, and he seemed very pleased with his findings and his superior said that they had done a good job and that it was a good catch as it was typically missed. They gave me my migraine cocktail and so I was woozy as the doctors left and my doctor returned to give me the easier to understand version of the whole situation.
I remember adrenal insufficiency, and tests came back indicative, and aggressive prednisone treatment, and endocrinology referral, and it has something to do with my other autoimmune disease, and they finally were gonna get me some help. He then tried to explain how my medication regime would be for treatment of inflammation of the stomach, slowing down my digestive tract, and prednisone, however ever since they began the migraine cocktail, I had been conscious but barely coherent, trying my hardest to stay awake and pay attention but drifting asleep (additionally because they had to give adivan in addition to the migraine cocktail which caused drowsiness as well).
I was discharged the next day once my blood pressure was relatively normal, and pulse was okay, and was feeling well enough to walk. He sent me with a set of new prescriptions. Prednisone 5mg 3x/day for 3 days then to 1.5/day until gone (which I'm still currently on). Gaviscon 80mL 2 hours after each meal as well as a medication which I can't for the life of me remember, but would take it 30 minutes before each meal.
So as I haven't fully done so, I will summarize my symptoms as chronologically accurate as I can remember.
- Diarrhea
- Fatigue
- Vomiting
- Hair loss
- Weight loss
- Low blood pressure
- Fainting
- Chills and night-sweats
- Fairly severe mental fogginess, confusion and inability to remember
- Headaches and migraines
- Sudden bursts of energy at night, where I stay up and can paint the kitchen, or completely clean the apartment or bake foods and then back to low energy levels again
As of now, I think the prednisone is working against my body as though I had felt relief and lessened then to no vomiting or diarrhea for about a week and a half and things began to crash again. Symptoms now in addition to previous symptoms;
- Pain in abdomen, varying locations, unlike gas pain, but extremely difficult to describe
- Pain in mid to lower back that has gotten increasingly worse over the past 5 days
- Dark urine
- Extreme fatigue (though I sleep 10+ hours and nap throughout the day)
- Darkening around my eyes
- Additional weightloss
- Additional fainting
- Strange tightness or pressure on chest
- Strange feelings as though my heart will be really slow and hard or fast and light and general feeling of weirdness as best as I can describe it
- Constant light-headedness though I'm not active or will be seated or laying
- Strange overwhelming hot flashes that come over me, and I can't seem to find anything to cool me down that last 30+ minutes
I'm sorry that this is so long, but I'm 21, I'm frightened as I am withering away while in this forever wait for endocrinology, frightened that one day my heart will stop, or I will just fall into a coma. I have lost over 25 pounds since early to mid February, and am continuing to lose more unintentionally. My appetite is low again, so I have to force myself to eat. Today was the first I had eaten in 4 days.
I just want to learn more about this disease as I think it is now a part of my life. I hope I stand corrected, though I fear I wont be. I just really needed to fully get what all is going on out there, just so I can try to process it better and any opinions or advice anyone would have for me would be greatly appreciated. Also feel free to ask me any questions, I am very open as I want to learn as much as I can.
I have had suicidal thoughts again, just wanting it to all be over with and to feel normal again. Though I'm not going to pursue that avenue at all and am looking for different ways to heal, besides the medicine provided by doctors, so I am seeking out yoga and holistic treatments. As well as awaiting the endocrinology appointment as well as an endoscopy that is to be scheduled. I feel hope, but just feel so terrible right now.
Thank you if you made it all the way to the bottom. I apologize for any grammar issues or if it is at all confusing to read. Lately my mind has just been a blur, so forgive my scattered thoughts.
I look forward to getting to know others in the community.
So I will start off with a bit about me. I'm a 21 year old female, currently in Ontario, Canada. I have been diagnosed with Major Depression (2011), Generalized Anxiety Disorder (2011), Post-Traumatic Stress Disorder (2011), Migraine Headaches (unsure of diagnoses date however had spread throughout childhood and grew more frequent in my adult years), Grave's Disease (2013), Hyperthyroidism (2013), Hypothyroidism (2013 due to Radio-Iodine treatment). These are my fully diagnosed conditions, however I have other conditions that are currently in question.
I have multiple tiny lesions in the white matter of my brain, technicians indicated possible early onset white matter disease. I also have a large variety of neurological symptoms consistent with Multiple Sclerosis, so though my MRI's of my brain show lesions they aren't in the area required for it to be MS, I am still awaiting further MRI scans of my spinal cord for other lesions for more possible evidence. Though I haven't been diagnosed, the MS clinic agreed to take my case for treatment this coming August.
Previous serious illnesses or surgeries would only consist of two incidents than I can recall off-hand. I had a breast reduction surgery (2014) with little to no complications, I believe I may have had a small infection, but nothing of concern, I believe I was on antibiotics. The other serious illness that I had was when I volunteered at a local wildlife rehabilitation centre. I had just had my wisdom teeth removed and was given a preventative antibiotic for any possible infections, well I got an infection anyways. So onto a second type of antibiotic to get rid of the current infection in my surgical wounds. While at the wildlife centre, I was working outside feeding the squirrels, a bee stung me and bacteria got into the wound. The wound got swollen and red and I was concerned it was an allergic reaction so I went to the hospital. While in the hospital they said the sting-site had gotten cellulitis, and I received my third type of antibiotics within a 1-2 week time span. Unfortunately, the bout of illness didn't stop there and due to me visiting the hospital after being on so many antibiotics, I contracted Chlostridium Difficile which put me back in hospital with blood pressure ratings that seemed to read too low to be understood on the machine. I was pretty close to falling into a coma or my heart giving out on me. Scary stuff, but I recuperated!
So, I'll begin into the tale of my experience with what appears to be, and with Internal Medicine support, I may have Addison's Disease. I know the disease is rare, and the symptoms are very non-specific, however, everything clicks. Every symptom. Anywho, back on track..
It was about February 2nd or 3rd and I began to get diarrhea, it was happening 10-12 times daily. Two days later, still suffering from diarrhea, the vomiting began. The vomiting began, and it didn't stop. It was constant. For the first few weeks I could still eat and drink somewhat, but that has diminished as my condition has worsened. I went into the hospital five times within the past two months for dehydration, vomiting, diarrhea, severe migraine headaches, fainting, low blood pressure and quite a low pulse.
My first few visits were very uneventful. I mean, they gave me IV fluids, and gave me migraine medications, and ran basic bloodwork, but they essentially ruled my symptoms out to anxiety, or marijuana affected usage (however, I had been smoking very low quantities at the time, and I generally don't smoke a whole lot to begin with). I went home and went about life as much as I could, but I could feel myself becoming more and more unwell.
I again fell into a vomiting, diarrhea, fainting spell and I was rushed to the hospital hardly able to speak from dehydration and low blood pressure. Finally I met the doctor who gave a damn. He looked at my charts and said "What the hell were they thinking?" and asked me if they did stool samples, because they weren't showing in the record system, I told them no, they didn't. He asked me if they did anything more than basic testing (ECG - yes, abdominal x-rays - yes, in depth blood tests - I didn't know, MRI's - no), if they had even considered disproving there could be something underlying, after - it was now about 3 weeks into my illness.
He started to run further blood tests, that were more in depth and contacted Internal Medicine to take over my case as he truly believed there was something deeper than just simple anxiety or marijuana usage. He was excited to find the blood results come back with some abnormalities pertaining to low cortisol levels. I can't remember what the exact figure was, but the initial ER doctor was ecstatic at the find and said he may have found the reason I've not been well for quite a long time. He said not to give up hope and give in to my anxiety and depression as he believed the mental health events were possibly due to this mystery illness.
He met with my assigned Internal Medicine doctor, who actually high fived him and said "Good find." It gave me so much hope that I had been missing, seeing my doctors being so excited with their findings and enthusiastic that if they know what it is they can treat it. It made me feel so much better.
I was rotated off of the ER doctors list and onto the Internal Medicine doctor's, as he had a waiting room packed full of people needing him. I gave him a teary thank you and good-bye as he finally gave me hope when, at that point I was on the brink of suicidal thoughts as I wanted this illness to end. I know it was only 3 weeks at the time (approximately February 28th at this point) but it felt like it was never-ending and I just was getting ready to want it to stop. I had stopped eating solid foods at that point, and was trying to drink water when I could and drinking boost or ensure, as well health drinks that contained multiple vegetables so that's where I got most of nutrition when I could keep it down.
So I was under Internal Medicines care, and they did a blood test, at start time, 10 minutes, 30 minutes and then 60 minutes. I don't know the name of the test they conducted, but the doctor returned with the head of his department to show his case, and he seemed very pleased with his findings and his superior said that they had done a good job and that it was a good catch as it was typically missed. They gave me my migraine cocktail and so I was woozy as the doctors left and my doctor returned to give me the easier to understand version of the whole situation.
I remember adrenal insufficiency, and tests came back indicative, and aggressive prednisone treatment, and endocrinology referral, and it has something to do with my other autoimmune disease, and they finally were gonna get me some help. He then tried to explain how my medication regime would be for treatment of inflammation of the stomach, slowing down my digestive tract, and prednisone, however ever since they began the migraine cocktail, I had been conscious but barely coherent, trying my hardest to stay awake and pay attention but drifting asleep (additionally because they had to give adivan in addition to the migraine cocktail which caused drowsiness as well).
I was discharged the next day once my blood pressure was relatively normal, and pulse was okay, and was feeling well enough to walk. He sent me with a set of new prescriptions. Prednisone 5mg 3x/day for 3 days then to 1.5/day until gone (which I'm still currently on). Gaviscon 80mL 2 hours after each meal as well as a medication which I can't for the life of me remember, but would take it 30 minutes before each meal.
So as I haven't fully done so, I will summarize my symptoms as chronologically accurate as I can remember.
- Diarrhea
- Fatigue
- Vomiting
- Hair loss
- Weight loss
- Low blood pressure
- Fainting
- Chills and night-sweats
- Fairly severe mental fogginess, confusion and inability to remember
- Headaches and migraines
- Sudden bursts of energy at night, where I stay up and can paint the kitchen, or completely clean the apartment or bake foods and then back to low energy levels again
As of now, I think the prednisone is working against my body as though I had felt relief and lessened then to no vomiting or diarrhea for about a week and a half and things began to crash again. Symptoms now in addition to previous symptoms;
- Pain in abdomen, varying locations, unlike gas pain, but extremely difficult to describe
- Pain in mid to lower back that has gotten increasingly worse over the past 5 days
- Dark urine
- Extreme fatigue (though I sleep 10+ hours and nap throughout the day)
- Darkening around my eyes
- Additional weightloss
- Additional fainting
- Strange tightness or pressure on chest
- Strange feelings as though my heart will be really slow and hard or fast and light and general feeling of weirdness as best as I can describe it
- Constant light-headedness though I'm not active or will be seated or laying
- Strange overwhelming hot flashes that come over me, and I can't seem to find anything to cool me down that last 30+ minutes
I'm sorry that this is so long, but I'm 21, I'm frightened as I am withering away while in this forever wait for endocrinology, frightened that one day my heart will stop, or I will just fall into a coma. I have lost over 25 pounds since early to mid February, and am continuing to lose more unintentionally. My appetite is low again, so I have to force myself to eat. Today was the first I had eaten in 4 days.
I just want to learn more about this disease as I think it is now a part of my life. I hope I stand corrected, though I fear I wont be. I just really needed to fully get what all is going on out there, just so I can try to process it better and any opinions or advice anyone would have for me would be greatly appreciated. Also feel free to ask me any questions, I am very open as I want to learn as much as I can.
I have had suicidal thoughts again, just wanting it to all be over with and to feel normal again. Though I'm not going to pursue that avenue at all and am looking for different ways to heal, besides the medicine provided by doctors, so I am seeking out yoga and holistic treatments. As well as awaiting the endocrinology appointment as well as an endoscopy that is to be scheduled. I feel hope, but just feel so terrible right now.
Thank you if you made it all the way to the bottom. I apologize for any grammar issues or if it is at all confusing to read. Lately my mind has just been a blur, so forgive my scattered thoughts.
I look forward to getting to know others in the community.
Thanks for reading and getting back to me. It's certainly discouraging when you go to the hospital they disregard me as someone just sick with anxiety without doing any tests. Blood, urine or stool and sent me on my way without any fluids and still faint. Really scary to feel so sick and doctors not take you seriously.
Hopefully the endocrine appointment will be soon! Do you find the constant hydrocortisone treatment causes any symptoms?
She said that she doesn't believe I have AD because when the ER doctors conducted their blood test on me, they didn't do one essential part of the test. So she is going to redo that test, but that is it. Otherwise I am out of her hair.
The reason I also say it was a bust, they made me do 5 consecutive BP readings. The nurse just kinda kept looking from me to the machine, and she said that the first reading, my lower number was too low to register, the next two readings were very low too apparently, then my BP spiked to 130 apparently (within a two-to-five minute period), and my final reading dropped back very low. The nurse asked what my typical range is, and its usually between 100-120/80 and she said it was remarkably lower than that, but as too not affect the results of the BP readings I wasn't allowed to know my numbers. She seemed rather concerned about me, and didn't leave me in the room by myself.
When the doctor came in she took my 130 BP reading, and the nurse said "That is the only time it was a good number." and the doctor said it should suffice and honestly the nurse looked kind of ticked. The nurse left to another patient and the doctor and I spoke, I asked the doctor for a copy of my BP results so I should know whether or not to drop by the ER, I was already feeling like crap, but needed to know if I was going to be taken seriously or not.
She said to ask for it at the front. When the appointment was finished I went to the front and asked for a copy and the receptionist said that the doctor keeps all of her patient documents and records, and that they aren't kept in their system so I should have just asked the doctor for a copy.
I was alone at this appointment, my mother tried to come but couldn't leave work. It was also the day I decided I wasn't going to drive again until I was well. I was driving home, and I just had no idea where I was, or where I was supposed to be going. I pulled over and just freaked out. I'm 21 and I felt like a 80 year old Dementia sufferer in that moment. Has anyone else become confused or disoriented and their memory slipping quite badly sometimes? Is that part of AD or the dehydration.
I'm so tired all of the time, I just want this all to be over with and to be back to me again. I hate feeling myself wither away into nothing and look into the mirror and see what used to be a pretty face sink, darken and dissolve into itself from all of this mess.
I'm sorry, I'm ranting. I'm just so frustrated being taken seriously, even if they find that I don't have Addisons, something is wrong, but the symptoms are so non-specific that it's so easy to brush it off as something that is just temporary or in your head.
It's just driving me nuts begging for help because you feel how bad its getting, but nobody wanting to be the one who takes on such a pain of a case.
Again, sorry for the venting.
While there my BP was quite irregular. The first two readings we too low to read, the first one was E38/28, the second was E21/32. The third then jumped up to 90/64, the fourth read 82/58 and the fifth jumped up to 103/63
So really quite bizarre for me. Is it typical for bloodpressure to fluctuate so rapidly for AD patients? I go from feeling fine one minute and able to get up and go do something small, and the next ready to pass out from low bloodpressure even while lying down, and then the cycle repeats. So is that typical for those with Addison's? I am now off of my prednisone and have noticed a difference, feeling even worse when my 5-minute energy levels change.