Secondary Adrenal Insufficiency

For the past four years I've been getting weaker and weaker.

It started out with getting to that serious muscle pain that tells you to quit exercising about ten minutes earlier than usual in my daily workout. I figured I was just pushing myself a little harder than usual. But gradually my workouts got to that pain point sooner and sooner. After 8 or 9 months I just couldn't tolerate it anymore, but I thought it might just be age or something (I was only 38!). It kept getting worse, but I ignored it - I had a more than full time social work job and four year old twins, so the exhaustion seemed understandable. I felt lazy. I was tested for sleep apnea, but didn't have it.

Then one day I couldn't finish grocery shopping, even though I already knew where every resting place in the store was. I sat there crying, feeling like if I took one more step or even stayed standing, I would fall down. I knew there was something seriously wrong that day.

The next time I went shopping, I broke down and used a mobility cart. I felt humiliated, like everyone was staring at me. And I did get glares - I *looked* perfectly healthy but fat. (Now I glare right back - fat people get disabilities too!)

I decided to tell my doctor about the exhaustion again. He suggested we adjust my asthma meds, assuming it was low oxygen levels. A month went by, no change.

For the next 3 years I went to specialists, got tests that all came out normal, and kept getting worse and worse. The thing I kept trying to explain was that I didn't START OUT exhausted, I started with and rapidly regained my usual high energy level. The time between healthy energy and excruciating muscle pain with exhaustion that made me sit down on the floor even in public places got shorter and shorter.

About 2.5 years in, I started having severe muscle pain the day AFTER exertion, just as if I'd been carrying heavy boxes or running 5K's the day before. By 3 years I couldn't stand long enough to sautee mushrooms or take a normal shower. It was (IS) very hard to manage my limited energy because I start out feeling fairly energetic, but quickly tire with minimal exertion.

I switched psych meds in case that was the cause, and lost 40 # in 4 months. I was constantly hot and started sweating a ton, and I have NEVER sweated much. I started eating salt and vinegar chips like they were going out of style and salting my food, which I'd never done - I usually hate salt. I started having excruciating abdominal pain and got my gall bladder out last fall. It took me six weeks to recover from laproscopic surgery, instead of the promised 3 days.

This spring we bought an electric can opener because I would drop the manual one when the burning muscle pain MADE me after a few rotations. My exhaustion level would reach a point I'd only experienced when I'd actually been dying from asthma attacks as a child.

Nobody knew what was happening to me. I was terrified that I was going to die without anyone knowing.

I requested a referral to an endocrinologist, and went to Dr. K who immediately knew that it was SAI when she heard about my 30 years on high dose prednisone and Post Traumatic Stress Disorder from childhood. I also have the classic fat deposit from steroid use called a "buffalo hump." (And seriously, would it KILL them to just say "fat deposit"?) She ordered a bone scan and vit D level, which was 5 out of 60. My bones are fine, thankfully.

Taking steroids isn't an option because they CAUSED the SAI in the first place. Also, because last time I took them I got steroid psychosis. But I can get the vitamin D up where it should be, so I'm concentrating on that. Then I can start the long road toward rebuilding my muscles.

10 comments:



Margaret A. Gannon said...

Hello Mary,

I ran across a link to your page today while I was searching for information on adrenal insufficiency. Today my internist said I might have it. I have heard of Cushing Disease, but Addison's is something new.

Anyway, I still don't understand adrenal insufficiency. I also have Hashimoto's Disease, another autoimmunine disease, and it's not uncommon when one has one autoimmunine disease to have another.

I am struggling with joint pain (not RA) BIG TIME and exhaustion. When I finally get to sleep (it takes awhile even though I am wiped out), I sleep soundlessly for 8 and more hours and wake up un-refreshed.

I haven't had any weight loss. Unfortunately, the Hashimoto's Disease has taken care of any hope I ever have of losing weight.

My dermatologist said to me that my weight was what was causing me to get so many skin tags. I said to her, "Well, you know, when I was young, I always wanted to grow up fat." Oh, hum. Like I really want to be fat?

Thanks for reading!

Margaret

.Jein.Noir. said...

I've had adrenal insufficiency for 9 years, since I was 11. The only thing that has consistently helped turn it around is green tea. At least 4 cups a day. Without it I will become the bed-ridden girl I was before. It's worked about 3 years now, but not greatly so. I am still much like the living dead, I just have a minimal life - as opposed to trapped in a deathbed. Herbs like wild yam and licorice seem to be effecting me for the better lately. Though, previously didn't seem to do much. Other little things I've noticed is I need a meat fix daily as well. I researched to find that animal fat contains some building blocks to adrenal hormones. I'm also easily iron-deficient, and when meat doesn't cut it raspberry leaf tea will do the trick.

Hydrocortisone had failed me when we originally figured out what was plaguing me - which took at least 5 years. It has also failed again recently. My body doesn't seem to accept drugs or synthetics. So, all the above remedies are very important in maintaining any level of participation in a normal life. While all these things may not help you, or anyone else with adrenal problems...I hope some o the information may prove useful to someone out there! At any rate, if you haven't tried some of these things, they are worth a shot. And there aren't any doctors I've ever seen who will deny you green tea. But, check about other herbs.

My apologies if I seem to ramble. This disability can cause that...

Anonymous said...

I'm 57 years old and recently diagnosed with secondary adrenal insufficiency, but have been symptomatic for about 30 years. I had been doc to doc for years-decades-and quit going becasue most of them told I was fine or I was a nut case. Despite all that I work full time as A RN and raised 3kids, had Lymes disease,a total knee replacement for early onset arthritis.
I have type 2 diabetes and went to endocrinologist at the university hospital where I work in Phila. I remembered a finding of 'partially empty sella' on a mri donel ast year for migraines and told him about that as well. He took a detailed history and finally, after 30 years, the correct labs were ordered!! I dismally failed the cortisol stim test and was promptly started on decadron 0.5 mg daily for the rest of my life.
Before this was diagnosed I was getting close to going part time because I could not work the last 1-2 days of the week due to profound, profound exhaustion.
Mt big challange now is-how do I live with this? What level of fatique is normal, and what level is crisis? Having been able to function with a baseline cortisol level of ONE (1) when 8 is low normal, I need to learn my 'new normal'. I'm home 2 days now with a minor URI that kicked my can, and my sugars are tough to control with the increased dosing of decadron for stress periods like this.

Any idea folks?

Grace

Anonymous said...

For adrenal insufficiency I take targetted amino acids (AdreCor and Serene products from Pharmasan Labs). To the person who takes green tea, be careful about only taking stimulants -- take something with nourishment to help your adrenal gland rebuild itself. You need the right amino acids and vitamins in the right proportion. It is working for me.

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Anonymous said...

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Anonymous said...

Hi! My name is Corri...I'm an advocate in the Adrenal Insufficiency Forum on MDJunction.com. I invite you to check out this site. MDJunction not only offers help for people with Adrenal Insufficiency, it covers just about any disease/disorder imaginable...from depression, to grieving the loss of a loved one.

Corri crz49@MDJunction.com

Anonymous said...

I was diagnosed with a SAI 3 1/2 months ago after 8 years of testing. I am in my late 20's and we are trying for a child. Therefore, after taking 10ml a day hydrocortisone pill for two weeks I decided to go without. I was told that this drug is considered a category C and can be damaging for the fetus, especially in the first trimester; however, I don't know if that's true if it's taken in small 10ml a day quantities.
I don't work currently so we can increase our chances in getting me pregnant without the added stress of working. I was overly stressed out at my last job; fainted three times in a few months and had a lot of other horrible symptoms: hot flashes, headaches, nausea, tremor, palpitation, and tunnel vision "attacks". This was before I was diagnosed with SAI.
I've been generally fine for the past few months except for the occasional days when most of the symptoms come back. I've found out that orange juice helps me increase the sugar level when it drops suddenly and I try to eat every few hours to avoid passing out. Even though, the tremor, headaches, nausea are still present on days when I feel sick.
I was told by my Doctor that pregnancy should restore the production of ACTH hormone due to my pituitary gland not producing enough. If that doesn't help, I hope that a small dose of hydrocortisone will allow me to hold a normal part-time or full- time job and have a quality life. At this point, without a proper treatment I don't think I can function normally in life or at work.

Anonymous said...

ok people quit saying that she needs to take something to "rebuild her adrenal gland." she has SAI, NOT primary adrenal insufficiency. The 2 etiologies are completely different. Primary adrenal insufficiency is caused by destruction of the adrenal cortex (thus part of the adrenal gland). SAI is caused by damage to the HYPOTHALAMUS or PITUITARY GLAND, NOT THE ADRENAL GLAND. The hypothalamus and pituitary send a signal to the adrenal gland to produce corticosteroid hormones. If there is no signal, the corticosteroid hormones can't be produced.

Anonymous said...

I am still going through more testing (expensive and no insurance). I did an ACTH stimulation test and my doctor told me if my cortisol levels started out less than 20 there was a problem , and also my ACTH should start the test out in the upper 1/3 of the 10 to 60 range. My baseline cortisol was 15 and my baseline ACTH was 8.1
The nurse who did the test told me she thought the test was effected because it took them an hour and a half to even get the blood draw nedle in (which raised my adrenal levels). After the test results came back, my doctor then proceeded to tell me there was no problem. ???

I have appointments with other doctors next week.

So far, it looks like secondary adrenal insufficiency. While I see adreanl insufficieny all over the internet, even on regular mainstream medical websites, and they say it can be "life threatening", a friend of mines doctor husband told me that most doctors don't like to treat adrenal insufficiency--until it becomes Addisons (!!)

All my life, my blood pressure has averaged about 82/54. I am 46 years old now and 5'7" and weigh 110 pounds. I have worked HARD to get up to that weight, and it can drop in a matter of hours from stress. My neck gets so stiff I can't move it for days and i get a pain in between my shoulder blades that feels like my spine is severely out of place. I even went to a chiropractor to have him put it back in place and he told me it wasn't out of place at all. I didn't reach puberty until I was 15 years old, and after that had menstrual cycles that lasted 10 or more days at a time, coming every 3 2 1/2 weeks, and extremely heavy. Last year i had a huge fibroid tumor removed that had me severely anemic, and then a few months later a hysterectomy. Sometimes my ankles and face swell up really badly.

I have never craved salt (but craved chewing ice when I was anemic).

Right now, I am doing about 2 tablespoons of salt per day, plus some licorice root (which has really helped bring my blood pressure up) and some of those little bottles of ginseng (not the ones with royal jelly) which has helped a lot in bringing my energy level up.

Not sure what else to do at this point, but those things have helped immensely and maybe they will help others.

Debbie in Colorado