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
Hello everyone! I've been wanting to ask about this topic for a while now as my doctor is stumped for an answer and I am sure I am not the only one experiencing this!
A little preface; I was diagnosed with AD in March. My symptoms began last fall, predominantly with chronic acute hypoglycemia, progressing into frequent hypotension. My A1C was 4.1, and my blood glucose average was 72mg/dl. Normal insulin response. I was working a very physically demanding job at the time and I was eating a LOT of food often to try to battle the hypoglycemia. Between the onset of symptoms and the beginning of HC treatment I lost over 40lbs while simultaneously taking in more than 4000 calories a day. Once I began treatment and my glucose levels stabilized I cut back to 2000cal/day. I did not initially gain any weight back until I suffered a critical knee injury that has left me crippled and unemployed/uninsured. Two months of being unable to walk put 20lbs back on. I've tried dieting below 2000cal/day but doing so causes hypoglycemic events regularly.
Once I could do light exercise again I began to do so regularly, but the more I exercised the worse I felt, and I don't mean in the short term. I was at the very most doing 2miles of walking on the treadmill and 30 sit ups and 30 leg lifts. As a whole my average and peak blood pressure and blood sugar levels began to drop the longer I exercised regularly. It got to the point where adding more HC would stabilize my readings slightly but the daily dose got to where my DR said it is safer to go back to the normal dose and just stop exercising, particularly because while my BP levels were being compensated for rather well with the additional HC, my sugar levels were not and were still falling. I started to get more frequent addisonian crises, and my response to cortisol was waning.
So, I stopped exercising, started relaxing more, and I started to feel a LOT better! My BP is back to normal around 120/80, and my average blood glucose level is back to around 90mg/dl. I'm feeling pretty damn good most days now, even dealing with stress a lot better!
BUT. I'm now up to 246lbs and I'm only 5'4". I'm very much overweight now and my size 40 pants that I was thrilled I could fit into at the time of my diagnosis no longer fit me.
I want to lose weight, I need to lose weight, and I am concerned about future health issues being so overweight. Unfortunately given the trend that I experienced with my vitals before; my doc recommends against dieting or exercise! My HC levels are where they should be and I am not having any signs of the dosage being too high or contributing to weight gain.
I don't know what to do. I don't eat a lot or unhealthily, often just 1600-2200cal/day. I know I put the weight on from being inactive, so the answer seems to be more active... but I can't risk having another crisis and I DO NOT want to go back to hypoglycemic/hypotensive fits and feeling drained all day every day.
How do you all deal with exercise and weight gain? Is there some simple answer my doc and I are just missing?
A little preface; I was diagnosed with AD in March. My symptoms began last fall, predominantly with chronic acute hypoglycemia, progressing into frequent hypotension. My A1C was 4.1, and my blood glucose average was 72mg/dl. Normal insulin response. I was working a very physically demanding job at the time and I was eating a LOT of food often to try to battle the hypoglycemia. Between the onset of symptoms and the beginning of HC treatment I lost over 40lbs while simultaneously taking in more than 4000 calories a day. Once I began treatment and my glucose levels stabilized I cut back to 2000cal/day. I did not initially gain any weight back until I suffered a critical knee injury that has left me crippled and unemployed/uninsured. Two months of being unable to walk put 20lbs back on. I've tried dieting below 2000cal/day but doing so causes hypoglycemic events regularly.
Once I could do light exercise again I began to do so regularly, but the more I exercised the worse I felt, and I don't mean in the short term. I was at the very most doing 2miles of walking on the treadmill and 30 sit ups and 30 leg lifts. As a whole my average and peak blood pressure and blood sugar levels began to drop the longer I exercised regularly. It got to the point where adding more HC would stabilize my readings slightly but the daily dose got to where my DR said it is safer to go back to the normal dose and just stop exercising, particularly because while my BP levels were being compensated for rather well with the additional HC, my sugar levels were not and were still falling. I started to get more frequent addisonian crises, and my response to cortisol was waning.
So, I stopped exercising, started relaxing more, and I started to feel a LOT better! My BP is back to normal around 120/80, and my average blood glucose level is back to around 90mg/dl. I'm feeling pretty damn good most days now, even dealing with stress a lot better!
BUT. I'm now up to 246lbs and I'm only 5'4". I'm very much overweight now and my size 40 pants that I was thrilled I could fit into at the time of my diagnosis no longer fit me.
I want to lose weight, I need to lose weight, and I am concerned about future health issues being so overweight. Unfortunately given the trend that I experienced with my vitals before; my doc recommends against dieting or exercise! My HC levels are where they should be and I am not having any signs of the dosage being too high or contributing to weight gain.
I don't know what to do. I don't eat a lot or unhealthily, often just 1600-2200cal/day. I know I put the weight on from being inactive, so the answer seems to be more active... but I can't risk having another crisis and I DO NOT want to go back to hypoglycemic/hypotensive fits and feeling drained all day every day.
How do you all deal with exercise and weight gain? Is there some simple answer my doc and I are just missing?
Another thing to look out for in the long term is osteoporosis. Taking steroids causing osteoporosis. My doctors didn't tell me this 13 years ago and I was just diagnosed. If you go to the osteoporosis site on DS people have posted what supplements they take to reverse this condition. I've been taking the supplements now for about 4 months and have seen a difference already.
I'm glad that you are feeling well again. That is a big accomplishment with this disease. Hopefully others have more suggestions regarding exercise and weight gain. Good luck.
Since cleaning up my diet, following the hauser diet and taking a few supplements I have been able to regularly exercise and I have started running. I have more energy now then I had before AD diagnosis.
I don't have a lot of time right now, but I'll come back later today or tomorrow and write out more specifically what I do each day.
Exercise can be done, there's a lady by the name of Dusty Hardman she runs marathons while having Addison's!
For example if I'm at 60mg/dl I could eat a 20oz steak and I'd still be at 60mg/dl for the next six hours. But one baked potato and I perk right back up to about 100mg/dl and stay there for about two hours before it trails back off towards the 80s.
Now, I don't know if having my HC dosing "set" now will yield better results, but I haven't noticed any better sugar maintenance from carb-free meals.