Addison's Disease / Adrenal Fatigue Syndrome

anacsitham5

I know this won't get any responses, but just checking out there in MFP land and yes I want to vent...
Has anyone else been diagnosed with Addisons Disease? Apparently it's not something doctors check for even if you have all the symptoms. I had to ask for the test after my chiropractor told me what he thought he had. You should check out these symptoms, you never know.

My chiropractor figured out what I had. First he said it sounded like AFS (Adrenal Fatigue Syndrome) which is caused by high stress, whereas my body couldn't produce Adrenal anymore. It was so severe, he suggested I get tested for Addison's Disease. Guess what...I have had it since I was a kid....it took 40 years to figure this out???

These are the symptoms (not in any particular order):
1. Severe cravings for salt....(I eat when I'm not hungry because I crave the salty foods). This is serious enough that I would compare it with craving a cigarette. Yes I used to smoke years ago so I know. I like awake at night craving potato chips, pretzels, popcorn...anything with salt on it.
2. Low blood sugar (yes, I was told I was hypoglycemic for years)
3. Low blood pressure - activity is hard for me as my blood pressure is usually about 90 / 60. I have "seizures" if I do something quickly as my blood pressure is too low.
4. Light headedness: can be contributed to the low blood pressure
5. Darkening of the skin (over new scars, over knuckles, in the creases of your palms or joints, and around your nipples - you don't have to have it in all those areas)
6. Difficulty concentrating, increased irritability, and depression
7. Nausea, vomiting, diarrhea, and belly pain (I didn't have this symptom on a regular basis, only seldomly)
8. Weight loss (Of course this was one sympton I didn't have as I am a stress eater!!!)
9. Sudden penetrating pain in the lower back, abdomen, or legs

I don't want meds so I will try to fix this naturally. Apparently my potassium levels are too low and it doesn't help. On that note, I hate bananas. I will try to find something else to try to get my levels up.

OK, I'm done venting now.

YoungGma29

I have a sister with Addisons. She almost died from it. Literally. I thank God it was finally diagnosed. She IS on medication. It certainly makes life difficult. Hard to exercise with those symptoms. She has to be very careful about over stressing her body and often has to adjust her medication to compensate for simple things like a cold. I can only imagine how discouraging it must be to be trying to lose weight and knowing your health seems to be fighting you all the way. It can sure seem like a losing battle. I am humbled.

dazzyd53

i have had addisons for 4 years now, i am on steriods without them i would die,nearly did 2 years ago. i had a baby 4months ago, lost 37pounds so far and go to the gym 5 times a week pm me if u want to know anything


if you have got addisons you will not fix it naturally!! this is for life.

YoungGma29

You are Awesome! My sister is on steroids. She has cracked both hips without even trying. Not sure now if she can have any children. She isn't that old. You are awesome because you are controlling your weight. You are awesome because you haven't let this stop you from living. You are just plain amazing!

anacsitham5

Thanks everyone! It's nice to no that I'm not the only one that has it. Whenver I mention it people think I'm crazy and google it!

dazzyd53

how long has your sister had addisons?
how did she crack her hips? i am worried as i hear long term use of steriods make our bones brittle
and thanks im doing everything i used to plus more, it does get me down sometimes and is much harder when im ill, even just a cold, but i have a little boy now and he makes me want to keep going

cjw6

Adrenal fatigue syndrome doesn't exist- its made up.
Addisons is an extremely dangerous & life threatening disease- if you have it you need to be on replacement steroids for life or you will be extremely unwell and potentially die. You can't 'avoid meds' or you would become very ill, and you definitely can't 'fix it yourself'.

As an aside, addisonian patients usually have a HIGH potassium and low sodium, with a low blood pressure +/- hypoglycaemia.

Are you sure about this diagnosis? Sounds like it might be time to have a serious talk with a doctor. (A real one!)

JackieJ13

I've had Addison's for about 5 years. It did take months to figure it out. I had to keep insisting that I felt horrible and something wasn't right. I was finally passed along to the right people. At one point I googled Addison's disease and saw the symptoms. I realized that I had all of them. One of the doctors who was testing me (for everything), said that if I felt bad I should immediately go to the hospital. So I did and I told them that I thought I might have Addison's and so they checked my cortisol. A week later, I was seeing an endocronologist and on medication! I felt so much better after. I ended up gaining quite a bit of weight which I am still struggling with. But I feel so incredibly thankful that I could figure it out and didn't feel like I was a hypocondriac anymore. (I'm sure people thought I was!) My Addison's was part of an auto immune attack on my endocrine system so I cannot have any more children.

As I understand it, you must be on medication or risk death. The reason I felt so horrible was because my blood pressure had dipped dangerously low. (Like 80/ something? can't remember) There is no fixing the adrenal gland. Once you show symptoms, your gland is damaged. Hope this helps.

anacsitham5

Adrenal fatigue syndrome doesn't exist- its made up.
Addisons is an extremely dangerous & life threatening disease- if you have it you need to be on replacement steroids for life or you will be extremely unwell and potentially die. You can't 'avoid meds' or you would become very ill, and you definitely can't 'fix it yourself'.

As an aside, addisonian patients usually have a HIGH potassium and low sodium, with a low blood pressure +/- hypoglycaemia.

Are you sure about this diagnosis? Sounds like it might be time to have a serious talk with a doctor. (A real one!)

Yes, it does exist. Not commonly diagnosed, but it exists. http://en.wikipedia.org/wiki/Adrenal_Fatigue_Syndrome

anacsitham5

Adrenal fatigue syndrome doesn't exist- its made up.
Addisons is an extremely dangerous & life threatening disease- if you have it you need to be on replacement steroids for life or you will be extremely unwell and potentially die. You can't 'avoid meds' or you would become very ill, and you definitely can't 'fix it yourself'.

As an aside, addisonian patients usually have a HIGH potassium and low sodium, with a low blood pressure +/- hypoglycaemia.

Are you sure about this diagnosis? Sounds like it might be time to have a serious talk with a doctor. (A real one!)

Dr James Wilson wrote a book about Adrenal Fatigue Syndrome. It's quite informative.

My endroconologist (sp??) put me on the potassium drops because mine was too low. I don't know why as it is opposite from the normal symptoms.

ADTeachTX

Wow! I never thought I would find people out there that suffer in similar ways that I do. Addison's and diseases like it are potentially fatal and need to be treated. I have been on Steriods since I was 2 to deal with a similar condition that causes my adrenal glands to not make coritisol. Weight management on steriods is possible and after you take them for a while your body shuts down its natural feedback loops and you are at that point only replacing what your body makes naturally. The trick to tricking the weight gaining effect that most people have on steriods is take them regularly and in the smallest dose possible to manage your condition. Also, awareness of the potential side effects of the medication help to make managing them more managable. If it helps to reduce your salt cravings then you will naturally eat less salty junk food and may even lose weight without trying. The only side effect of long term steriod use that I have to be aware of as far as my weight is concerned is the side effect which causes the fullness sensor to not work properly. I can't tell when I am satisfied, only when I am stuffed. So I have to know that this is the portion that I should eat and stop at that. When I train my brain that this amount is enough and walk away I feel in control and proud of myself.

The reason that I still struggle with weight is that I don't always listen to my own good advice. I know my pitfalls and fall into them anyway!!! I have successfully lost weight in the last on steriods and I will do it again!

As a side note about my condition: I have to adjust my meds when I am sick and especially if I have any medical condition that takes me to the hospital. It scares me that you want to try to deal with it without meds. If the diagnosis is right the meds that they will treat it with are called fludrocortisone. This helps to maintain the mineralcorticoids that you body should make but addison's patients don't make or don't make well. Without them you could die very quickly from an illness or injury because your electolytes cannot balance themselves and your heart stops!!! Please reconsider!

anacsitham5

I actually had a talk with my doctor today about all of this. She urged steroids too. Unfortunately, a lump was found on my back today and I had to schedule a biopsy for its removal. She is trying to figure out the best way to take care of this. When it rains it pours! Maybe all the fat melted away and now she could see the lump.

countryclubber

I've had Addison's for about 5 years. It did take months to figure it out. I had to keep insisting that I felt horrible and something wasn't right. I was finally passed along to the right people. At one point I googled Addison's disease and saw the symptoms. I realized that I had all of them. One of the doctors who was testing me (for everything), said that if I felt bad I should immediately go to the hospital. So I did and I told them that I thought I might have Addison's and so they checked my cortisol. A week later, I was seeing an endocronologist and on medication! I felt so much better after. I ended up gaining quite a bit of weight which I am still struggling with. But I feel so incredibly thankful that I could figure it out and didn't feel like I was a hypocondriac anymore. (I'm sure people thought I was!) My Addison's was part of an auto immune attack on my endocrine system so I cannot have any more children.

As I understand it, you must be on medication or risk death. The reason I felt so horrible was because my blood pressure had dipped dangerously low. (Like 80/ something? can't remember) There is no fixing the adrenal gland. Once you show symptoms, your gland is damaged. Hope this helps.

ive had it for 3.5 years now with a 55 lb weight gain and have lost 15 of it...and plateaued greatly...please share how youre successful in ur weight loss journey

thanks

crazyaunt

For those fairly new with Addisons, I find this website very helpful. http://www.nadf.us/index.htm I've had it for over 10 years now and still find new things such as we shouldn't be downing gatorades because of the high potassium. I do have an occasional one here and there, but should do more water with salt.

tameko2

Coconut water is a good source of potassium. just FYI.

deluda

I have been with Addison's for 35 years. It is the opposite of Cushings Syndrome, which I had twice. I have no adrenal glands from my first surgery and the tumor on my pituitary removed from the second surgery. On meds for life. Fortunately, with no adrenals my body doesn't produce any steriods. Therefore, what I take by mouth does not cause an over-abundance in my system. Went into adrenal failure from not taking the salt retaining pill and only remember one day of a four day stint in ER. Now, I never miss a dosage! Your medicine is very important!

dbanks80

I don't have Addisons but I am really disturbed at how many of you had to do your own diagnoses/research and insist the doctors test for it.

It's no such thing as take the doctors word for it. We really have to do our own research now. I've experienced this when my son was admitted to the ICU one year

Sorry for going off topic.

gaeljo

Have you heard of Maca powder? It's supposed to help with Adrenal stress and it does work. You get it in an organic food store or online through Amazon or wherever you like to shop. So the deal is you put it in a smoothie and drink it. Try it. I hope it helps you, it helps me. I don't have Addison's disease, but I do workout a lot and adrenal fatigue is common among athletes.

Mandykinz2008

I have Secondary Adrenal Failure (from Lymphocytic Hypophysitis) which eventually caused my adrenal glands to atrophy and shut down completely: diagnosed in 2003 when I was 17. I've never heard of a chiropractor diagnosing it, but I'd recommend going to a Endocrinologist immediately. Without my medication I would be dead, no question, and no doctor can figure out how I stayed alive as long as I did (God has a plan). Before diagnosed I spent more time in the hospital than out, was all of 70 pounds due to never being hungry (as well as an eating disorder), was having lung/heart problems, multiple seizures, and looked like the walking dead. I did gain weight on medication but at that point I needed it desperately. Adrenal insufficiency and failure is not anything to play around with. Medicine is way better than death! I've been on dexamethasone for 8 years now with no side effects other than feeling 110% better. It is possible to lose weight once your body adjusts to the new medication, and I was recommended to wear a medical bracelet to let EMTs or ERs know that if I end up injured a cortisol boost is necessary (which I needed about a year ago in emergency surgery). Don't mess around with this stuff..meds = life..period.

anfmusicgrl

Meds are very important in treating Addison's disease.

My step-mother died from a stroke at the age of 47; from Addison's disease. Just over a year ago.

Take care of yourself and your body.

crazyaunt

Have any of you experienced cold chills and your skin turning cold as an ice pack after about 20 minutes of working out? I've tried putting salt in my water, taking extra doses, gatoraded before, during and after, but still become weak and cold.

cheria55

That happens to me every time I work out. I've asked others about it but have never gotten a response. I get freezing cold if it's hot or cold out, even after a lengthy HOT shower I'm still shivering and have goose bumps. Then I get so sleepy I usually end up taking an hour or more nap. I work out but try to keep it at a lower pace so this doesn't happen but that doesn't do much for my fitness level. Does anyone know why this happens?

KelMcFadden

Hello I have had Addison Disease for 24 yrs( all my life really, just how long I have been diagnosed), took them 17 months to diagnose me and been on Cortef, and have many other health issues... I wish I would have know what I do now back then,. But was wondering how you were doing now. I just happen to see you post on here. Hope all is well and life is treating you kind.
Kelly M

hockeymonster1939

I highly doubt you had Addison's for 40 years. And you cannot treat Addison's naturally if it's really Addison's. Addison's is not a joke and you need to take care of yourself. I have had Addison's Disease for 24 years and have been a weight lifter hockey player and runner. Key is education and self awareness and keep moving.

Adrenal fatigue syndrome is real and you probably can treat it homeopathically. I always recommend exercise. It doesn't have to be a lot

Noreenmarie1234

DO YOU have darkening of the skin?

VintageFeline

hockeymonster1939 wrote: »

I highly doubt you had Addison's for 40 years. And you cannot treat Addison's naturally if it's really Addison's. Addison's is not a joke and you need to take care of yourself. I have had Addison's Disease for 24 years and have been a weight lifter hockey player and runner. Key is education and self awareness and keep moving.

Adrenal fatigue syndrome is real and you probably can treat it homeopathically. I always recommend exercise. It doesn't have to be a lot

Strong first post on a 5 year old thread......

youngmomtaz

VintageFeline wrote: »

hockeymonster1939 wrote: »

I highly doubt you had Addison's for 40 years. And you cannot treat Addison's naturally if it's really Addison's. Addison's is not a joke and you need to take care of yourself. I have had Addison's Disease for 24 years and have been a weight lifter hockey player and runner. Key is education and self awareness and keep moving.

Adrenal fatigue syndrome is real and you probably can treat it homeopathically. I always recommend exercise. It doesn't have to be a lot

Strong first post on a 5 year old thread......

I saw the thread, I read the thread. Often I post on threads without looking at the date of the op. Why criticize her for it? Unless I am wrong, your one sentence reads very sarcastically.

SCoil123

dbanks80 wrote: »

I don't have Addisons but I am really disturbed at how many of you had to do your own diagnoses/research and insist the doctors test for it.

It's no such thing as take the doctors word for it. We really have to do our own research now. I've experienced this when my son was admitted to the ICU one year

Sorry for going off topic.

This! It's a shame. I went through it for years before my hashimotos diagnosis too. Even with a multi nodule goiter and family history of thyroid disease they only checked my tsh until I insisted on a full panel.

Sued0nim

Of course addisons is a real disease, it's rare but it's real

Adrenal fatigue syndrome isn't
And homeopathy is a crock but can often be a decent placebo and in many situations that's more than enough. Particularly with a made up disease

VintageFeline

youngmomtaz wrote: »

VintageFeline wrote: »

hockeymonster1939 wrote: »

I highly doubt you had Addison's for 40 years. And you cannot treat Addison's naturally if it's really Addison's. Addison's is not a joke and you need to take care of yourself. I have had Addison's Disease for 24 years and have been a weight lifter hockey player and runner. Key is education and self awareness and keep moving.

Adrenal fatigue syndrome is real and you probably can treat it homeopathically. I always recommend exercise. It doesn't have to be a lot

Strong first post on a 5 year old thread......

I saw the thread, I read the thread. Often I post on threads without looking at the date of the op. Why criticize her for it? Unless I am wrong, your one sentence reads very sarcastically.

Because they are addressing something that 4 years after the fact is pretty irrelevant. They're not adding to the discussion of Addison's, just criticising an OP who should, 4 years down the line, have a grip on their diagnosis or found out it was something else by this point.

They then went on to advocate for homeopathically treating adrenal fatigue. That whole sentence is full of nope.

jtoon1966

I have addisons and take daily cortisol replacement, by logging every morsel in the my fitness pal app I lost 30 pounds from January - June of this year and I've maintained my weight loss. Now it really mattered to me, so I stuck to a 1,000 calorie a day diet through obsessive tracking but since losing, I've reduced my cortisol intake and feel better than I have in years.