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    Mamame's Avatar
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    Addison's Disease?

    I'm curious if anyone here is dealing with Addison's Disease - and how they have adapted their diet and lifestyle to help manage/control things?

    Just met with an Endo yesterday about chronic exhaustion and various other unexplainable health issues. After the appointment I did some research and based on the tests he has set up and his line of questioning he is trying to rule out Addison's. I have every single symptom of Addison's (some quite severe), and had an episode last year that stronly resembles an adrenal crisis (self treated because I assumed it was just a stomach virus). It occured a couple of days after attempting to go primal the first time. I was in bed very sick for a week and then spent another 2 months trying to recover. It was over nine months before I started to feel "normal" (and my normal isn't that great). Have had a couple more milder episodes. And yes, I did go to the Dr. when this all started, but it took over a year and a half to get into the specialist. They are in short supply here.

    Finally switched my diet to strict primal this past April. It has helped ease some of my symptoms (hypoglycemia, blackouts), but I by no means feel wonderful like I know I should if everything was ok. I was trying strength training but the muscle fatigue was getting worse and worse each time until I was dreading it. I still try and get in a couple of sprints every week, but those are getting fewer and farther between. I do take a yoga class once a week because I need/want at least some activity. I have been suffering pretty severe insomnia lately which doesn't help matters.

    I go for tests next week, but probably won't get results until December. In the meantime I'm just wondering what I can do for myself to improve my days. I am a stay at home mom with 2 young children so resting isn't always possible (and don't even get me started on trying to reduce my stress level. ) I'd love to hear how others are dealing with this illness.

    If it doesn't end up being Addison's, I am guessing that at the very least it is severe adrenal fatigue. I don't know enough about either to know how closely the two are related other than that I will be put on a couple of meds to replace cortisol and aldosterone if it is Addison's. How different are the two?

  2. #2
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    The two aren't related. Adrenal fatigue is a quack diagnosis. Addison's Disease is real and can be very serious. It cannot be managed through diet alone. I would listen to your endocrinologist and not fall into the trap of self-diagnosing on the internet and trying all kinds of pseudoscientific "treatments" from people whose entire science/physiology education can be summed up as "I read a few articles on the internet."

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    Adrenal fatigue is not a "quack' diagnosis. If you have chronically low cortisol/DHEA/aldosterone levels but not full-blown Addison's, you'll need to see someone who knows how to treat it (some people require hydrocortisone). If you can find a doc trained in function medicine or functional endocrinology, they generally have a much more intricate knowledge of the endocrine system and underlying factors that affect it.

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    Mamame's Avatar
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    Quote Originally Posted by marqueemoon View Post
    Addison's Disease is real and can be very serious. It cannot be managed through diet alone. I would listen to your endocrinologist and not fall into the trap of self-diagnosing on the internet and trying all kinds of pseudoscientific "treatments" from people whose entire science/physiology education can be summed up as "I read a few articles on the internet."
    Yes, as I stated in my post, I AM being seen by an endocrinologist. However, it will be some time before I get my test results back, and until I have them he will not start me on medication. In the mean time, I was looking at things that I can do now to make my life a little easier to live.

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    I had exogenous adrenal fatigue/failure from years of oral steroid use for intractable autoimmune arthritis. If you do have addision's I don't think there is too much that diet can do. You will require exogenous hormone treatment forever. However, while I was (painfully) waiting for my adrenal glands to kick back in I found several things very helpful.

    1. Staying grain and sugar free and keeping carb levels low enough that I was burning fat.

    2. Completely eliminating caffeine.

    3. Trying very hard to get to sleep before 11 pm in a dark room.

    4. Supplementing magnesium and vitamin D. I also take quite a lot of potassium which really, really helps with the terrible muscle weakness. But I am not completely sure if that is related to just the adrenal problem.

    5. Homemade bone broths.

    Good luck. If you don't have Addisons disease, don't give up. Figuring out your health issues can often be a marathon instead of a sprint. Persistence is the key

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    Quote Originally Posted by Mamame View Post
    I'm curious if anyone here is dealing with Addison's Disease - and how they have adapted their diet and lifestyle to help manage/control things?

    Just met with an Endo yesterday about chronic exhaustion and various other unexplainable health issues. After the appointment I did some research and based on the tests he has set up and his line of questioning he is trying to rule out Addison's. I have every single symptom of Addison's (some quite severe), and had an episode last year that stronly resembles an adrenal crisis (self treated because I assumed it was just a stomach virus). It occured a couple of days after attempting to go primal the first time. I was in bed very sick for a week and then spent another 2 months trying to recover. It was over nine months before I started to feel "normal" (and my normal isn't that great). Have had a couple more milder episodes. And yes, I did go to the Dr. when this all started, but it took over a year and a half to get into the specialist. They are in short supply here.

    Finally switched my diet to strict primal this past April. It has helped ease some of my symptoms (hypoglycemia, blackouts), but I by no means feel wonderful like I know I should if everything was ok. I was trying strength training but the muscle fatigue was getting worse and worse each time until I was dreading it. I still try and get in a couple of sprints every week, but those are getting fewer and farther between. I do take a yoga class once a week because I need/want at least some activity. I have been suffering pretty severe insomnia lately which doesn't help matters.

    I go for tests next week, but probably won't get results until December. In the meantime I'm just wondering what I can do for myself to improve my days. I am a stay at home mom with 2 young children so resting isn't always possible (and don't even get me started on trying to reduce my stress level. ) I'd love to hear how others are dealing with this illness.

    If it doesn't end up being Addison's, I am guessing that at the very least it is severe adrenal fatigue. I don't know enough about either to know how closely the two are related other than that I will be put on a couple of meds to replace cortisol and aldosterone if it is Addison's. How different are the two?

    I know this was posted a while ago, but what has been your experience now a couple years later with Addison's disease. My docs are very concerned about my symptoms and I took the test literally this morning which I will have results this afternoon. I also have celiacs disease...apparently they are finding the two are correlated more and more...according to my endocrinologist. If I have this...I've been compensating with plenty of salt and water for the last year and with symptoms getting worse. But can I manage this without medications just as I have been doing and add some supplements to get by? What happens if I just don't treat this?! I know Celiacs can end in cancer. I've only fainted once but had I known and paid more attention to my salt/water levels etc it would have been ok. I hear terrible stories about the side effects of the meds and I want nothing to do with side effects.

    Thoughts?

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    Quote Originally Posted by amyb View Post
    I know this was posted a while ago, but what has been your experience now a couple years later with Addison's disease. My docs are very concerned about my symptoms and I took the test literally this morning which I will have results this afternoon. I also have celiacs disease...apparently they are finding the two are correlated more and more...according to my endocrinologist. If I have this...I've been compensating with plenty of salt and water for the last year and with symptoms getting worse. But can I manage this without medications just as I have been doing and add some supplements to get by? What happens if I just don't treat this?! I know Celiacs can end in cancer. I've only fainted once but had I known and paid more attention to my salt/water levels etc it would have been ok. I hear terrible stories about the side effects of the meds and I want nothing to do with side effects.

    Thoughts?
    Did you end up with a diagnosis of Addison's?

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    Have you tried Tulsi/Holy basil before? It's very, very helpful for what you've mentioned. Check out Amazon for some of the reviews, you'll see many people mention it for adrenal fatigue. It's inexpensive, you can take it as a capsule or a tea, works quickly, and really, has no bad side-effects. Might be worth looking into while you wait for the results, it definitely can't hurt!
    I'm sorry you're going through this, I too stay home with 2 little people and know how exhausting it can be.

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    Quote Originally Posted by amyb View Post
    If I have this...I've been compensating with plenty of salt and water for the last year and with symptoms getting worse. But can I manage this without medications just as I have been doing and add some supplements to get by? What happens if I just don't treat this?!

    Thoughts?
    I have Addison's disease- I was diagnosed when I was 10. I'm 31 now. I am a woman, so I can't help with the E.D. part of your problem, sorry.

    I usually don't say much in the forum, but I just needed to put my 2 cents in.

    To answer your questions- no, you cannot manage Addison's with just saltwater and supplements. Addison's requires medication. If you don't treat it, you will die from it.

    With Addison's, your body lacks the ability to release potassium and hold onto sodium in the blood. This alone makes Addison sufferers very prone to dehydration- water follows salt, and if your body is losing salt, it loses water as well. That is only one part of the problem. Having high potassium is also toxic to your heart.

    Because of my potassium levels, I have to watch what I eat- can only have 1-2 bananas a week- and I cannot take medications that may raise potassium levels (which is all forms of birth control for women, lol).

    As far as medications go, there are 2. Hydrocortisone (Cortef) and Fludrocortisone (Florinef). Florinef's job is to balance the sodium/potassium ratio in your blood. Cortef helps balance out glucose levels, helps your body respond to "stress" both self inflicted (chronic worrying for example) and actual stress- being sick, getting injured, etc. There is a daily dose (maintenance) and a "stress dose" for when you get sick/injured/need surgery/that kind if thing which for me is 3x maintenance 3x a day for 3-5 days.

    Are there side effects? Yes. To me, they were minimal. When I first started my meds, the worst side effect I had was a voracious appetite- which caused me to gain 90 pounds that I am trying to lose. That went away when my levels were finally balanced. The other side effects I have are minimal in my opinion- slow healing (cuts that take 3-4 days in normal people take 7-10 days to heal on me), lower body temperature- I average 97 degrees when healthy, I cannot tolerate weather that is hot and humid- I can deal with up to 85 with no humidity or about 75 with. After that, I need AC and sports drinks (Powerade zero.) When I do get sick- which happens more often then most because I have lowered immunity- I almost never register a fever. For me, fevers start at 98.5 degrees-normal people are 98.6. If I get to 99 degrees, I am in trouble. Usually by 101 I'm considering the hospital. (That has only happened to me 1 time- I hit 102 and was in the hospital 4 days.) Most things I can fight off on my own with extra meds, lots of fluids, lots of sleep, and antibiotics. I also have a very low (nonexistent) libido. That's from the broken adrenals.

    I have been on my meds a long, long time now. I have even been able to have my doses decreased a few times, but I will be on these meds for life.

    Oh, I did have a question for you- do you bronze? Does you skin "change colors"- do you turn brownish when you aren't feeling well, or are your knuckles/knees/elbows a darker shade the the rest of you? (It's an Addison thing.)


    Very sorry for the all over the place novel. Feel free to message me if you have any questions about living with Addison's- I will be more than happy to talk about it.
    Began Paleo journey 06/08/2014
    Beginning weight: 244.3 pounds/ 41.8% bodyfat
    Current Weight: 235.4 pounds/41.0% bodyfat
    Goal weight: 150 pounds/ 15% bodyfat

    "The path to a better life begins with a single step."

  10. #10
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    Quote Originally Posted by phillyfarmgurl View Post
    Are there side effects? Yes. , lower body temperature- I average 97 degrees when healthy, I cannot tolerate weather that is hot and humid- I can deal with up to 85 with no humidity or about 75 with. After that, I need AC and sports drinks (Powerade zero.) I also have a very low (nonexistent) libido. That's from the broken adrenals.
    I used to have issues with low body temp. This spring I introduced RS into my diet (cold cooked potatoes and rice), and this summer I noticed that my body temp has risen and is in a normal range - not sure if this is coincidence or not - at the same time I was able to decrease my cortef by 5mg/day. I'm hoping to drop it another 2.5 mg this fall and get down to an even 25 mg/day. Has your endo ever talked to you about DHEA? It's another adrenal hormone that is a precursor to sex hormones. I take 50 mg/day and that has greatly improved my overall sense of well being and increased my libido considerably.

    The heat thing though - that is still my biggest issue. I want to be able to love and enjoy summer but I feel absolutely horrible as soon as it gets hot outside. No amount of extra salt helps. My endo has told me to double my florinef when it gets hot so we will see if that helps at all next summer.

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