Recently diagnosed Addison's in early 2012 after a salivary cortisol test showed basically nonexistent cortisol levels throughout the day, in addition to concerning results from Genova Labs testing.
Doc gave me a trial of hydrocortisone. 15mg daily gave me instant energy. My life came back, but then I realized all of the future side effects that could occur if I remained on the steroids. Painfully weened off, and have been attempting to kick this thing holistically for the past 7-8 months.
> Has anyone ever successfully recovered from addison's holistically?
Currently, I've been on a ketogenic (no sugar, high protein) diet for about 8 months. I eat meals every 2 hours. In total, I eat about 200g protein everyday. Even so, I've lost about 15 pounds since early 2012.
I take licorice root and probiotics in the mornings. Nystatin 3-4x at 500,000 IU daily and plan to take this for another 2 months. I've been taking threelac for about 1.5 months w/ the Nystatin to help remove yeast. I also average 600mg GABA daily, used during stressful situations. In the evenings, I take chinese herbs (Tian Wang Bu Xin Dan) for sleep, in addition to 600mg more GABA calm. Finally, I also take about 7.5mg of mirtizapine. Without it, I have bad panic attacks and poor sleep. Finally, I also supplement with about 5000mg vitamin C, 500mg B-complex, and L-Theanine. I see a real genius of a doctor who has advised the above. I also see a counselor in the same practice.
I'm observing some improvement in function. Energy levels are still low, but "passable." I don't have energy for friendships or relationships right now due to persistent social anxiety and nervousness that I've never known since 2010. However, I am functioning at a 3.0 GPA average 7am-7pm everyday in college classes. This is a big improvement for me.
Even so, I'm exhausted at the end of everyday, and have to "manually" control my confidence, positive energy, and overall energy levels during social situations. I snack throughout the day on sunflower seeds, edamame, etc. and if I don't, I get even more nervousness, most likely due to low blood sugar. Additionally, I have to specifically force myself to be "unaware" of all of my body aches, pains, "skeletal shocks", and even tiredness. When I get home at the end of the day... I have nothing left.
> Being alienated from friends, and living "just to get by" is tough for me. I used to be highly capable. I'm beginning to wonder if I'm fighting a losing battle, or one that could potentially cause more damage if I don't take the corticosteroids. Any insights into the effects of prolonging low-cortisol? Does this lead to mental disease? MS? Worse?
My prayers are extended to the members of this forum. I still believe we can overcome Addison's with a determined nutritional plan. Your thoughts, prayers, and support will be greatly appreciated.
The following user gives a hug of support to Joey4866: firefly5 (07-05-2012)
Well, Addison's can be a symptom of Celiac Disease and I would imagine would get a lot better on a gluten free diet if this is the cause... Before you start taking any steroids, get a blood test done for celiac disease. It is a very simple test. If your doc won't do it then you can buy a home celiac test from either London Drugs or Online. The cortisol will put out the flame basically and the celiac will be undetectable through blood if you are taking cortisol pills so thats why it is better before.
I think if you are trying to beat it then you need to find the cause otherwise you are just treating your body as it keeps fighting itself. Cortisol is an anti inflammitory So your body has been trying to put out a fire. Something you are either putting into your body or have in your body from somewhere, your body thinks is foreign and is attacking it thus using up your cortisol levels, or if Celiac it can be attacking your adrenal glands because there is gluten there. Its real important to get checked for Celiac if you think you have Addison's and are not on the meds yet. Once on I would think you have to do a small intestenal biopsy to check for Celiac but not sure.. Let me know the results if you check....
another thing I want to say is that you should have some hydrocortizone and floraneff on hand because in your state you are very suseptable to an adrenal crisis. I have seen this happen and it happens fast, you are too out of it too communicate and end up dead or in a coma if someone gets to you in time. so in your search for the cause, keep the harsher meds around so you still have time to find the cause, you may have a shot the docs have given you to administer if you end up in this state but it doesn't do a whole lot once your there, so if you are feeling real bad some time you can at least start taking the pills and keep yourself here. please. lots of love to you, I know what your going through and it WILL be OK.
....long term effects, well one would be low glucose levels which if you add a fight or car accident, you could potentialally end up dead real fast it is a very fine line. you know what you feel from the natural way and you know what you feel from the steroids so if you don't feel better soon I would switch. But, check out the Celiac thing first!.....
Thanks for the response. I was tested, and do not have celiac disease. However, my doc is checking my iron, thyroid, and vitamin levels to see if my low cortisol has been throwing anything else off.
I took a short 3 day boost of steroids last week, because my life was basically hitting the floor! Ever since, I've been to get ahold of everything again, and ween back off the steroids. That is, I do have them on-hand. However, when I take them I get the most vivid nightmares. Also, headaches get pretty bad, even at 5mg doses for me.
Alas, I'm continually researching steroids' affects on candida, and I truly believe that a few more months of my anti-candida paleo/ketogenic diet and lifestyle with nystatin and threelac will eliminate it. Despite the poor level of energy, social life, grades, and general functionality of this whole ordeal.... I'm determined to chip away at (what I believe to be) candida until it's completely gone.
I'm coming up on my 8th month of anti-candida supplements, diet, and wellness. Will ask my doctor to check me for candida soon, but feel like I'm making progress, so I almost don't even want to know!!
I was diagnosed with Addison's almost 26 years ago and have no side effects from the medication. I recently asked my endocrinologist about the many listed side effects of cortisone and he said in our case (replacement) there should be no long term side effects. So far so good.
If you are not functioning properly you likely do not have enough cortisone in your body.
Get your levels too low and you will slip into crisis...When that happens you can turn septic in minutes. I have had it happen to me.
Please be very very careful.
There are other forms of cortisone to try if you are getting headaches.
Talk to your endocrinologist.
I had a doctor's appointment this week. My doctor has been advising and overseeing my nutrition/supplement approach. He finally insisted, "You absolutely need to be on hydrocort"....
So after over two years of battling this holistically, I took my first 10mg dose of hydrocortisone today. Instant energy. Will be taking about 15-20mg daily to star out, then moving up to 25mg if I need more. Still have my concerns about long term implications, but realizing I only young for a while longer. Excited to pursue life to the fullest again.
Albeit, while I was able to supplement to ease my chronic fatigue and stay functional for almost two years, it has been a struggle. The low cortisol world is an emotional and psychologically taxing place, that I don't wish upon anybody for any extended period of time.
As a final note: A holistic approach to Addison's is highly unsustainable at $1000/month for supplements and diet to do "right". In comparison, hydrocortisone was $4.56 at the pharmacy today. Nevertheless, I've learned more about health, nutrition, and biology than I ever would have dreamed of learning. In this way, I will continue to supplement based on what I can afford. This will most likely include Source Natural Tribulus Extract (low testosterone), Source Naturals GABA Calm (sleep), Tian Wang Bu Xin Dan herbal tea extract (sleep), L-glutamine (digestion), and Iron.
OMG what a fantastic post by you! Im getting alot out of it,, Im the King of Natural healing now, My sucess from Supplements and walking a mile per day has been thru the Roof Trust me,, ive taken Prednisone for low adrenals My dr never uses the term Addisons Disease Ever Kinda kewl huh! hes a Great talented endocrinologist, has a withered hand which doesnt bother him or his patents He acts happy like dana Carvey of SNL, they look alike... Ill keep this short cuz its 5 30 am here in Portland Im a male of 53 look younger cuz of genes, Have had Chronic Fatigue Syndrome and the nightmare symptoms for many decades Im 90 Percent cured now and people i know are happy,, I did it all Drug free, it was all due to malnutrition,, Super common but People deny its existance,, Think Overexercising that is recommended with a strict low calorie diet alot of people due == severe Malnutrition no brainer huh
I take 5 mg of Prednisone or sneak more hahah that my main drug for The Adrenals! see ya soon , Mike in PDX
I absolutely would go back on your cortisol and aldosterone med. Addison's is a deficiency state and those are just replacing the deficient hormones back to a normal level, The side effects from steroids that you read about are from excess steroids at levels used to suppress immune function, above and beyond the normal levels your body produces. There is no reason to live like you are, barely surviving and functioning. If your thyroid was deficient you'd replace that. This disease can kill, but worse, make you live in a state where you'd rather die you feel so awful. Please give your body what it needs since it isn't making it like it should. You should not have side effects as long as your doses are appropriate.
Thanks again for the encouragement. I really appreciate the reinforcement to stick with hydrocort. Today will be day 3 of taking hydrocprt after a 2.5 year holistic battle with addison's. A test a month ago showed cortisol below the low range three times of the day, and was very low in the mornings. I've been living in a colorless world for far too long.
Yesterday I took up to 25mg but have been feeling sleepy after every dose. It's not an agonizing sleepiness by any means- more like a warm drunkenness. I speculate this is merely a drop in blood sugar when I take the hydrocort because I have been notoriosly reactive hypoglycemic since the start of all this...
However, I have not eaten sugar for about 8 months. Instead, I have maintained a strict keyogenic/paleolithic diet that diminished these symptoms. So, I wonder why this is happening with the introduction of hydrocort?
Our medication definitely has some effect on our appetite, metabolic rates, and how our body processes sugar. The different steroid medications (if that is the correct terminology) we Addisonians live with with react very differently.
I find I must eat something sustainable or my body shreds it to nothing and I sugar crash.
Hydrocort is very short lived yet powerful medication...I feel best with smaller doses several times per day. Currently I am working with 10-5-5mg in the morning, noon, and night respectively.
I too think it best to split doses, like 15mg AM, 10mg midafternoon, for example. You might try that and see how it feels. Cortisol should raise your blood sugar not drop it. The Addison's itself will cause hypoglycemia. Glad you are back on it, and hopefully feeling better.
Are you taking your cortisone throughout the day or all at once? My daughter takes 3 times a day and feels a boost when she takes her dose not sleepy. I was so glad to see you went on meds. I was worried about you!
Yes, I do take throughout the day. 10 10 5 is usually how I split it up, though somedays are 10 5 5 5.
Just got done seeing DR. Kennedy at the Cleveland Clinic today, as hydrocort doesn't seem to be making a large difference in my day to day. Have a slew of lab tests coming up revolving around my endo function. Will keep you posted!