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
Hi everyone!
I'm new here, and I'd like to introduce myself and my story. My name is Sig, I'm 27, happily married for seven years now, and I was diagnosed with Adrenal Insufficiency (assumed Addison's Disease) in February of this year. I'm unemployed, physically disabled (but not on disability) due to a destroyed ACL in my right knee, currently filing unemployment (but haven't received any checks yet in two months - they're still deciding my case), totally broke, and in more medical debt than I can keep track of or ever hope to repay.
I've got quite the story of this turbulent last twelve months if anyone is interested, but the short of it is that I had six addisonian crises; one nearly fatal one, injured my knee, had a failed surgery, and became crippled. I then lost my job and my health insurance after the surgery. Now I get a letter saying the health center my doctor is at won't see me until I pay what I owe in entirety.
As for the specifics; I'm on Cortef (hydrocortisone) 10/10/5/5/(5) [last dose if I'm awake long enough to need it]. It works well but doesn't last long enough to live a normal life. I need to take a dose every four hours or I start heading to a crisis by the five hour mark. I don't generally have any symptoms while dosing correctly though. My doctor has run all the blood tests available to him (cortisol and aldosterone levels, testosterone levels, blood sugar, A1C, insulin marker, normal blood counts, electrolyte levels) but can't go any further. Having no insurance and living hundreds of miles out in the country has left me without the option of seeing a specialist.
The test data:
-My aldosterone levels seem fine, electrolytes are normal so I'm not on any fludrocortisone replacement.
-My cortisol levels were extremely low (tested first thing in the morning) prior to starting cortisol replacement therapy.
-My A1C is 4.3, my insulin marker suggests that there have been no insulin spikes or elevated levels of insulin.
-My blood sugar levels are normally between 70mg/dl and 90mg/dl even with eating regularly. If I eat a high glycemic meal it rises to about 102mg/dl but that is as high as I have ever tested it. If I miss a dose of cortef my sugar plummets and will not rise. The dosing I am on keeps it from dropping below about 65mg/dl but it still won't bring it up to normal range (100-120mg/dl).
-My testosterone levels are very low, but not nonexistent. We've been avoiding replacement therapy for fear of sterility issues.
How it started:
I first presented with chronic acute low blood sugar levels. I self medicated by increasing my food intake. I was eating up to 5000cal/day (but I was working a very physical job) in order to keep blood sugar levels out of the hypoglycemic state. I lost 35lbs while at the 5000cal/day intake level. It wasn't until my first crisis where I passed out face down on the floor and nearly had my heart stop (48bpm) from low blood pressure (70/30) that I realized something was majorly wrong. It took a month to get in to see a doctor who wouldn't pass it off and believed there was something going on. I had five more crises between that first one and when I got to see my doctor. I went to the ER for the second crisis but they wouldn't treat me for anything, they left me in a room for four hours as I wasn't important enough. They refused to check my vitals and just claimed that I had the flu. My BP rose on its own and I went home. We started with 10mg Prednisone (equiv of 40mg cortisol) which knocked out my immune system so we switched to cortef 5mg and worked up in dose until my blood sugar and blood pressure stabilized. We found four hour dosing by trial and error, but research shows there is a very short biological half life for cortisol, which explains the need to frequently dose.
I find myself needing increased cortisol when I am under stress, both physical and mental/emotional. Even a mild cold drops my BP and sugar levels. I'll double my dose when I know I am sick or under extreme stress (like lately) but nothing seems to extend the time between doses, which is what really makes things hard for me. Every four hours while awake like clockwork I have to take cortef or I get tired, headache, dizzy, weak, get the sweats, fever, urgent need to urinate, and then if not fixed the low BP/sugar issues get to danger levels. I gained back all the weight I lost since beginning treatment, though I attribute that mostly to inactivity due to my knee injury. I broke a wisdom tooth two days ago and am slated to have it extracted this coming Wednesday. My jaw is currently infected as a result.
My world is falling apart. I'm struggling to put food on the table for my wife and I. I need to refill my prescription in a month but can't get in to my doc unless I work something out with the health center or pay off my bill. I can't find work, much less work that I can do with my knee the way it is. I'm living on my last credit card right now which can only sustain us for a few months. I was denied food stamps despite/because of no income. I'm paying $90/month in cortisol costs.
I come to you all not as a man expecting answers or miracles, merely as a man hoping for someone who will listen with a kind ear. My wife and I are alone in this in the middle of no where with no one to turn to. I hope to one day make ends meet again and simply carry on with a quasi-normal life. Until that day it would be most comforting to know others are out there who understand my plight.
-Sig
I'm new here, and I'd like to introduce myself and my story. My name is Sig, I'm 27, happily married for seven years now, and I was diagnosed with Adrenal Insufficiency (assumed Addison's Disease) in February of this year. I'm unemployed, physically disabled (but not on disability) due to a destroyed ACL in my right knee, currently filing unemployment (but haven't received any checks yet in two months - they're still deciding my case), totally broke, and in more medical debt than I can keep track of or ever hope to repay.
I've got quite the story of this turbulent last twelve months if anyone is interested, but the short of it is that I had six addisonian crises; one nearly fatal one, injured my knee, had a failed surgery, and became crippled. I then lost my job and my health insurance after the surgery. Now I get a letter saying the health center my doctor is at won't see me until I pay what I owe in entirety.
As for the specifics; I'm on Cortef (hydrocortisone) 10/10/5/5/(5) [last dose if I'm awake long enough to need it]. It works well but doesn't last long enough to live a normal life. I need to take a dose every four hours or I start heading to a crisis by the five hour mark. I don't generally have any symptoms while dosing correctly though. My doctor has run all the blood tests available to him (cortisol and aldosterone levels, testosterone levels, blood sugar, A1C, insulin marker, normal blood counts, electrolyte levels) but can't go any further. Having no insurance and living hundreds of miles out in the country has left me without the option of seeing a specialist.
The test data:
-My aldosterone levels seem fine, electrolytes are normal so I'm not on any fludrocortisone replacement.
-My cortisol levels were extremely low (tested first thing in the morning) prior to starting cortisol replacement therapy.
-My A1C is 4.3, my insulin marker suggests that there have been no insulin spikes or elevated levels of insulin.
-My blood sugar levels are normally between 70mg/dl and 90mg/dl even with eating regularly. If I eat a high glycemic meal it rises to about 102mg/dl but that is as high as I have ever tested it. If I miss a dose of cortef my sugar plummets and will not rise. The dosing I am on keeps it from dropping below about 65mg/dl but it still won't bring it up to normal range (100-120mg/dl).
-My testosterone levels are very low, but not nonexistent. We've been avoiding replacement therapy for fear of sterility issues.
How it started:
I first presented with chronic acute low blood sugar levels. I self medicated by increasing my food intake. I was eating up to 5000cal/day (but I was working a very physical job) in order to keep blood sugar levels out of the hypoglycemic state. I lost 35lbs while at the 5000cal/day intake level. It wasn't until my first crisis where I passed out face down on the floor and nearly had my heart stop (48bpm) from low blood pressure (70/30) that I realized something was majorly wrong. It took a month to get in to see a doctor who wouldn't pass it off and believed there was something going on. I had five more crises between that first one and when I got to see my doctor. I went to the ER for the second crisis but they wouldn't treat me for anything, they left me in a room for four hours as I wasn't important enough. They refused to check my vitals and just claimed that I had the flu. My BP rose on its own and I went home. We started with 10mg Prednisone (equiv of 40mg cortisol) which knocked out my immune system so we switched to cortef 5mg and worked up in dose until my blood sugar and blood pressure stabilized. We found four hour dosing by trial and error, but research shows there is a very short biological half life for cortisol, which explains the need to frequently dose.
I find myself needing increased cortisol when I am under stress, both physical and mental/emotional. Even a mild cold drops my BP and sugar levels. I'll double my dose when I know I am sick or under extreme stress (like lately) but nothing seems to extend the time between doses, which is what really makes things hard for me. Every four hours while awake like clockwork I have to take cortef or I get tired, headache, dizzy, weak, get the sweats, fever, urgent need to urinate, and then if not fixed the low BP/sugar issues get to danger levels. I gained back all the weight I lost since beginning treatment, though I attribute that mostly to inactivity due to my knee injury. I broke a wisdom tooth two days ago and am slated to have it extracted this coming Wednesday. My jaw is currently infected as a result.
My world is falling apart. I'm struggling to put food on the table for my wife and I. I need to refill my prescription in a month but can't get in to my doc unless I work something out with the health center or pay off my bill. I can't find work, much less work that I can do with my knee the way it is. I'm living on my last credit card right now which can only sustain us for a few months. I was denied food stamps despite/because of no income. I'm paying $90/month in cortisol costs.
I come to you all not as a man expecting answers or miracles, merely as a man hoping for someone who will listen with a kind ear. My wife and I are alone in this in the middle of no where with no one to turn to. I hope to one day make ends meet again and simply carry on with a quasi-normal life. Until that day it would be most comforting to know others are out there who understand my plight.
-Sig
https://www.pfizerhelpfulanswers.com/pages/Find/FindAll.aspx
Also talk to your hospital/doc office and see if they have any financial programs you can take advantage of. Most have some sort of assistance program, it can be a pain to jump through all the hoops to qualify, but in the end it's worth it.
- Kristen
Welcome to the Addison's support group. Sorry you are having so many problems besides the Addison's. I hope things get better for you soon.
Lynn
Good luck!
Just know that there are many of us out here ready to listen and help where possible!
If your blood pressure is dropping, you need Florinef. THAT will prevent the crisis's from occurring. That med makes you retain salt so that your blood pressure stays stable and normal. Salt is the key to living with Addisons.
I have no insurance so I order Fludrocortisone from another country. The cost difference was $35 a month with my Dr's script at a local pharmacy, or $80 for an entire year from India. I have a blood pressure machine and the India meds work just as good as the US brand meds:)
Lori
Good luck!
http://www.dailystrength.org/c/Addisons_Disease/forum/16614142-diy-salt-supplements
I'll definitely apply for the prescription assistance program, thanks!
I was initially concerned about not being on fludro as well but every aldosterone test I took came back normal. Kidney function tests also came back normal repeatedly. I'm not sure if my sodium is low like most addisonians, or if it is only low when having a crisis. I haven't noticed any salt cravings or any reduction in symptoms when eating salty foods, but I don't normally use a lot of salt or eat a lot of salty food, and it isn't like I tried pounding salt when approaching a crisis. Hell, most of the time I'm actually on the brink of a crisis I can't even talk or lift my head up. I usually moan enough to alert my wife and she grabs a cortef and shoves it down my throat. If I catch it early then I can communicate that something is wrong, but that's about it.
In addition, research shows that higher doses of cortef have a built in mineralcorticoid (fludrocortisone/aldosterone/florinef) effect, so perhaps with me being on 30 to 35mg/day of HC (before stress or illness doses) it is enough that I'm not leaking salt like a sieve. The aldosterone/electrolyte/kidney tests were done after I began cortef treatment. I may not be at optimal levels hence the BP dips between dosings, but perhaps just enough to skew the test results.
I definitely want to look into disability coverage, even if it is only just a partial supplemental type deal so that I could live off of a part time wage. My only worry is that I don't have access to a doctor who is well versed enough in adrenal disease to state whether or not I am fit to work. My doc has done wonders with what he has access to, but most of all the medical work has been guess and check style where we're googling about it during my office visits and flipping through medical textbooks. I don't think he would be comfortable making a ruling one way or the other about my ability to work. He didn't even know what medicine or dose to give me when we first figured out it was adrenal insufficiency; I started on what I did because of research I did myself that I provided to my doc.
http://www.lifescript.com/doctor-directory/condition/a-addisons-disease-mi.aspx
I'd personally go see one who is associated with a University or College. My doctor is at Sanford here in South Dakota and the Sanford Medical campus is also a University. I have found being with a doctor who is associated with this kind of establishment is way better than just jo schmoe in timbuckto.
I'd definitely try to increase your salt, even though you have no cravings for salt your body is still flushing it out like crazy. I'm on 25-30mg/day HC and no fludro, my labs always look fine, I have no cravings for salt, but I feel a bazillion times better when I make myself eat the salt. I hate eating salty foods because it takes away the taste and pleasure in meals hence why I started making my own capsules and taking salt that way.