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Is PB/Lowcarb safe/compatible with Addison's disease?

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  • #16
    Mamame

    Thank you so much for your advice and for posting a real life case. I'm happy to find an Addison sufferer that has gone through the whole deal. It's "small" details like those crashes you had the first times that I'm looking for and I find very important, so thanks for sharing.

    My conclusion is that anyone that is already aware of their condition, monitoring their symptoms, and in control of the medication dose should be able to transition into PB / LCHF without much of a problem. But of course a controlled transition is better than an abrupt one.

    Regarding your condition, I think you might look into one other adrenal hormone that doctors forget to supplement you with: aldosterone. This is especially true if you feel frequent salt cravings and have low blood pressure. Maybe it helps avoiding the lows and would enable you to exercise. You should probably discuss this with your endocrinologist.

    Wish you all the best,
    Keep the information flowing.

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    • #17
      Actually cortef supplies some mineralcorticoid, so my endo does not think I need florinef quiete yet. I have new blood work coming next month though so that might have changed in the last few months. Definitely something that is on both of our radar though.

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      • #18
        Hi there,

        I have Addison's and felt compelled to join the conversation even though it's about two years after this thread was last commented on. I nearly died from an Addisonian crisis when my sodium level dipped to a mere 99. I was diagnosed as a result of labs and tests they ran after I recovered (I spent a week in the ICU and I'm lucky to be alive). Several years later, I was also diagnosed with type 1 diabetes (adult-onset, also known as LADA Latent Autoimmune Diabetes in Adults). I have done a ton of research to learn to cope with my illnesses. vnevoa, I noticed you had said excess cortisol makes you thin, while deficiency of cortisol makes you gain weight. That is actually incorrect; it's the other way around. Excess cortisol makes you gain weight, while deficiency of cortisol will make you lose weight. That is why weight loss is a symptom of undiagnosed Addison's. My understanding is that cortisols play an important role in the metabolism of the macronutrients, and not having enough means you will not metabolize your sources of energy properly.

        I hope your friend is doing well. The initial weight gain that occurred after starting on hydrocortisone was likely the result of the hydrocortisone itself. It is very common for Addison's sufferers to gain weight after starting treatment. It is impossible to get a physiologically perfect dosing regimen, since corsisols are secreted throughout the day according to a normal circadian rhythm in a non-Addisonian. An Addisonian can try to mimic this by taking hydrocortisone in several divided doses daily, but it will never be what it would have been if secreted naturally. It can also take some troubleshooting to find the right dose. Sufferers are often slightly overmedicated, and this can contribute to weight gain. Speaking for myself, I would far rather be overmedicated than undermedicated because Addison's is life-threatening, but your friend may need to visit another Endo and talk about making an adjustment. Adjustments must be made SLOWLY and under medical supervision, because an Addisonian crisis can happen quickly and be fatal. Many Addisonians just have to accept that their weight regulation is always going to be a little more difficult because of the fact that hydrocortisone doesn't mimic natural cortisols perfectly.

        Your friend would probably also benefit from getting their thyroid checked. Hypothyroidism can cause weight gain and tends to co-exist with Addison's. (Having two out of three of Addison's, type 1 diabetes, and autoimmune hypothyroidism is a syndrome called Schmidt's, and though rare in the general population, it is relatively common among Addisonians.)

        Speaking of diet, I definitely recommend going gluten-free. It has made a huge difference to how I feel even though I haven't been diagnosed with Celiac. In general, going gluten-free is a great idea for anyone with an autoimmune disorder. I also recommend making dietary changes slowly. I have personally accidentally induced Addisonian crisis in myself by trying to go vegan suddenly. For reasons I don't fully understand, protein does seem to be important to maintaining stability in Addison's. I find the right diet for me is like a love child of Paleo and Dr. Joel Fuhrman's Eat to Live: that is to say, HUGE quantities of vegetables, moderate quantities of fruits, eliminate the dairy and grains, small amounts of starchy vegetables, nuts, seeds, plenty of beans, and a little bit of animal protein in the form of meats and fishes. This keeps my blood sugar in check and minimizes the amount of insulin I need. I have experimented quite a bit with my diet, trying Paleo, trying vegan, and this seems to be the best combo for me personally, but I do believe everyone is different.

        One other thing: your friend would do well to seek out a support group of some kind, even online. I highly recommend NADF: the National Adrenal Diseases Foundation (http://www.nadf.us/). They are a great source of information and support. The Addison's Disease Self-Help Group of the UK is also an amazing source of information (Addison's Disease Self Help Group (UK)). Good luck! I am rooting for your friend and it's awesome you are there to help them through it!

        Have a good day,
        CK
        Last edited by cks; 06-30-2014, 01:06 PM.

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        • #19
          I forgot to add one thing... salt intake is important in Addison's. How much salt you can eat will depend on the fludrocortisone dosage, but I find that it is ok for me to eat plenty of salt. Some dietary advice out there says to reduce salt consumption. That does not apply to an Addisonian. It is a salt-wasting disease, so too little can be dangerous. Again, Addison's patients should work with their endos and monitor their fludrocortisone (brand name florinef) dosages in conjunction with their salt intake.

          CK

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          • #20
            I too, am an Addisonian who is following the PB. Nice to see that I am not the only one here, and a lot of really good information has been shared. Will add in my 2 cents if its wanted.


            Did not know about the correlation between addisons and celiac. Explains a lot, actually.
            Began Paleo journey 09/06/15
            Beginning weight: 236.5 pounds/ 41.8% bodyfat
            Current Weight: 228.3 pounds/34.1% bodyfat
            Goal weight: 150 pounds/ 15% bodyfat

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

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            • #21
              Originally posted by phillyfarmgurl View Post
              I too, am an Addisonian who is following the PB. Nice to see that I am not the only one here, and a lot of really good information has been shared. Will add in my 2 cents if its wanted.


              Did not know about the correlation between addisons and celiac. Explains a lot, actually.
              2 cents welcome here.....
              My wife had a talk with a friend and now I'm on a merry chase trying to sort out what can be done for her husband. Apparently he can't get to specialist for some time due to waiting lists, etc... and is really in bad shape.

              Survived cancer but the chemo trashed his body's systems, and now this. If paleo and or anything else you have tried helped, I could use a breakdown of it. He might be finally willing to listen now.. I hope.

              mark

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              • #22
                Originally posted by flutecrafter View Post
                2 cents welcome here.....
                My wife had a talk with a friend and now I'm on a merry chase trying to sort out what can be done for her husband. Apparently he can't get to specialist for some time due to waiting lists, etc... and is really in bad shape.

                Survived cancer but the chemo trashed his body's systems, and now this. If paleo and or anything else you have tried helped, I could use a breakdown of it. He might be finally willing to listen now.. I hope.

                mark
                Well, let me start by saying I am no expert, and i have only been following a modified PB since June.

                Little background about me:

                I am 31 years old, and was diagnosed with Primary Addison's disease when I was 10. I had hyperpigmentation, and would pass out any time my mom yelled at me. I also ate salt like it was going to disappear. What helped me was my sister- she has a brain disease (adrenoleukodystrophy Adrenoleukodystrophy Information Page: National Institute of Neurological Disorders and Stroke (NINDS) ) as well as Addison's, so mom already knew what to look for. I am currently very controlled with medication- I take 20 mg hydrocortisone (Cortef) daily, as well as 0.1 mg fludrocortisone (Florinef) every other day, alternating with 0.05 mg Florinef on the other days. i am hoping to be able to get back down to 10 or 15 mg Cortef a day like I was in high school.


                When I was diagnosed, and as my medications were still being adjusted, I had an insatiable hunger- which was from the steroids, lol. I could eat 2 supersized Big Mac meals at McDonalds, and about an hour later be looking for another meal. I gained about 100 extra pounds by the time I was 16. I had ballooned up to 252 pounds. Now I currently have osteoarthritis in both knees, borderline HBP, glucose intolerance, stomach issues (from long term steroid use), pre-diabetes, as well as Addison's. I finally decided (after seeing my mom, dad, and sister develop diabetes from being CW and SAD, and my brother also has HBP and is possibly pre-diabetic) that I don't want to end up on their path, so something has to change. I tried everything- WW, vegitarianism, paleo, slimfast- whatever I could get a hold of to try and get myself back down to healthy.

                I found the PB when I thinking of going back to Paleo, and I have been trying to stick to it as best I can. I say I am on a "modified" primal because I still eat/drink things that are non-primal.

                I can't tolerate the heat- about 80 with no humidity is my limit. Anything above that, or add in humidity, and I get sick- lethargic, headaches, nausea, etc. That's when I trade drinking water for a sports drink- Powerade Zero, to keep from getting dehydrated. Works well.

                I also eat a little higher carb level than the PB suggests- I am currently eating anywhere from 115 to 130g of carb in a day. This comes mostly from veggies, but I do eat sweet potatoes and yams almost every day. I noticed I have more energy and am more "balanced" during the day when I eat a little extra carbs. I also still eat beans/legumes- but I have gone from eating about 3 cups of beans in a day down to about 1/2 cup in a week. I also eat a fair amount of fruit in a day- usually 3-4 servings per day. Because of the Addison's, I have to be mindful of my potassium intake, since Addison's makes your body hold on to potassium and waste sodium in the blood. I limit my intake of bananas, even though I love them to death, to about 1-2 servings per week.

                I also eat generous amounts of meat- beef, lamb, pork, poultry, seafood - all kinds, eggs, dairy products, keifer, as well as vegetables, fruit, some nuts, dark chocolate on occasion, lots of water (about 8-10 8oz glasses a day) as well as other things I am sure I am forgetting. I avoid grains, sugar, artificial sugar, soda- regular and diet- and greasy/fried/fast foods.

                For exercise, I walk every day- it's about a mile in half an hour, up and down hills. I also do squats and pushups on alternating days, and I am working on getting strong enough to do pullups a well. If I don't feel 110%, I don't exercise. I'll walk around the house, do chores, and play with my dog, but I won't go over-and-above it.

                I also sleep between 8 and 9 hours a night, sometimes throwing a nap in during the day if needed.

                I started back on June 8, 2014- I was 244 pounds with a 41.8% bodyfat. As of today (August 9, 2014) I am down to 235.4 pounds and 41.0% bodyfat. I have energy I didn't know I had, my moods are starting to be more steady, my knees don't hurt, and my stomach has been having less issues. I am still figuring this all out, and I need to get current lab work done (no insurance, and I hate getting blood drawn- I pass out, lol.) Endocrinologist says if I keep going in the right direction, I will be able to come off the blood pressure meds- which I was fighting them on even before they started me on them. It's a diuretic, and Addison's makes you prone to dehydration. Yup, was not a smart move by the GP. I might also be able to reduce the amount of steroids I need as well (fingers crossed.)

                I hope some of this was helpful- if you have any questions, feel free to message me as well, I will help as best I can.
                Began Paleo journey 09/06/15
                Beginning weight: 236.5 pounds/ 41.8% bodyfat
                Current Weight: 228.3 pounds/34.1% bodyfat
                Goal weight: 150 pounds/ 15% bodyfat

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

                Comment


                • #23
                  I started primal about a year and a half before my Addison's diagnosis. I was feeling terrible (I had had a baby recently, and chalked up most of the feeling terrible to being post partum with a baby that didn't like to sleep and nursed a lot - very active and refused solids), a few friends were doing primal and feeling great so I decided to jump on the band wagon. That lasted two days before I crashed hard - thought I had a stomach virus at the time, but in retrospect it was likely an adrenal crises. I was sick for over a week and things probably would have been pretty bad had my husband not been force feeding me electrolyte solution. I didn't really recover from that episode so went to the Dr, and after some tests and what not got referred to an endocrinologist (it was another 19 months before I actually saw him though). I gave up on the primal for a month or so and then decided to give it a go again. Two days in and I was feeling almost as bad as the first time. I ate some carbs and felt better. I decided to go more slowly. I kept my normal carby b'fast and tried to reduce my lunch time starches and completely eliminate supper time starches. Over the next year I slowly cut back my lunch and b'fast starches and going full out primal. My GP was really pushing me to cut out all starches b/c of my very bad hypoglycemia.

                  By the time I got my Addison's diagnosis I had been pretty strictly primal for a few months. I have tweaked things quite a bit over the years. Adding in resistant starches has helped me a ton. I sleep much better, I don't get as bloated as before and I'm not crashing very often at all - I very rarely updose anymore and was actually able to drop my hydrocortisone dose by 5 mg and am planning on dropping another 2.5 mg soon. My weight fortunately hasn't been a big problem for me since diagnosis - I did gain quite a bit in the beginning (20 lbs), but I looked like a walking skeleton when I was diagnosed, so I absolutely needed to gain the weight. I also have Hashimotos thrown into the mix. Despite 2 autoimmune diseases I feel pretty good most of the time and can almost forget about my health issues (you know - other than the handfuls of pills I have to take each day).

                  The most important thing though. Diet changes need to be made SLOWLY in someone with adrenal insufficiency. A drastic dietary change is stressful and can trigger an adrenal crisis. Advise your friend to make one change at a time, get used to it and then make another change.

                  If you have any other questions let me know.

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                  • #24
                    Hello. I actually registered just so I could reply to this thread. I have Addison's but not from an autoimmune condition but from having both my adrenals surgically removed. This was because I had Cushing's Disease that wasn't completely cured after two surgeries. So, now I take steroids to replace the adrenals and the thyroid - levothyroxin, hydrocortisone, fludrocortisone. I have had this unique combination since 1994. I conceived and gave birth to two healthy boys and my endo published an article about me.

                    I have tried a gazillion diets but have trouble sticking to any of them and haven't had success with most I did stick with. Several years ago I tried some whole food diet promoted by Jillian Michaels (don't eat anything that didn't grow from the ground or have a mother - if your great grandmother wouldn't recognize it don't eat it) and had the most success on that diet. I have been doing some research and am going to start doing paleo strictly. I do know that ppl with Addison's can't metabolize stored fat as easily as "normal people" and you can have an Addisonian crisis from an oral glucose tolerance test so be careful if your doctor wants to do that. Also, I think Addisonians tend to have hypoglycemia and when I was pregnant my doctors were wishing I was hyperglycemia. Also, I have really low blood pressure even though I am easily 40 pounds overweight.

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                    • #25
                      Addison's Disease and Low Carb Diet

                      I was diagnosed with Adrenal insufficiency in 1985 and in the 30+ years I have had several crisis. The severe adrenal crisis are brought on by illness such as the flu where nausea and vomiting are involved and I cannot keep down oral medication. "Stress" adrenal crisis are easily managed by additional cortisone steroid and yes sometimes carbs (as a cheat). I have found that regular Gatorade is a fast response to making the "hollow" feeling go away. I regularly exercise and eat right and have been able to keep my weight under control. One nagging issue is muscle cramps as I lose weight. The weight loss has to be gradual or the leg cramps become disruptive (especially at night sleeping). This is a product of not being able to eliminate excess Potassium from my body.

                      So on to the low Carb Diet. I have just started (into my 2nd week) of a Ketogenic diet mostly to support my wife. I have had some interesting results. I lost 8 lbs my first week and my muscle cramps went completely away. I have not experienced the fatigue or "hollow" feeling during my workouts, although I do feel like I have no energy. This is normal in the Keto adaptation phase converting away from glucose and relying on Ketones for energy instead. It is too early to draw any conclusions but so far so good. I will write back as I progress through this experiment to detail my results.

                      I have had several doctors and all have said that a normal life should be expected with Addison's disease. The replacement steroids are a close approximation to what the body normally produces. The trick is Addison patients slug dose throughout the day and the body controls in real time (increasing hormones when a demand is detected), So Addison's patients are either over/under dosed at any given time.

                      By the way changing a diet does not put you into crisis.....stress or illness does. I will concede that for some a change in diet does equate to stress

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