Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
I keep going through these terrible bouts of exhaustion. I have a small pituitary tumor (prolactinoma) that is being treated with Cabergoline since April 2008. Prolactin levels are now in the normal range.
I also had normal but low thyroid levels and just about every symptom of hypothyroid. Started thyroid treatment in December 2008. I take Armour Thyroid and feel better with the majority of the symptoms except the exhaustion. Thyroid levels are in the mid range now.
I also have low progesterone levels and take a progesterone cream days 15-28 and those levels are normal. Treatment started January 2009. My monthly cycles are now normal with this where before they were 23-55 days in between.
Last year my cortisol levels were looked at. My morning fasting cortisol was 6. I also did a 24 hour silva test and it showed depressed between 4 - 5 and 11-midnight.
I did have a cortisol Stimulation test that came back that my body responded to cortisol. Initial draw was 13.4, after 30 minutes it was 30.5, and after 60 minutes it was 26.7. I really don't think the test was done correctly. I'm scared to death of needles as it is. I had black and blues up and down both arms. The nurse doing the test tried four times twice in each arm to do an IV and after all the ended up manually doing each part of the test.
I feel like I have my hormones balanced. I'm still getting these terrible bouts of exhaustion. It's strange though that I have documented low levels of cortisol and can't help but wonder there is something more going on. I'm really thinking may be secondary AI where I have the pituitary tumor???
But I don't have weight loss issues though... if anything I've gained 44lbs steadily over 3 years. I haven't lost weight, but at least stopped gaining since the hormone treatment. I'm at my witts end and can't keep being this exhausted!!! I sleep 10 hours, can barely get out of bed and don't feel rested, and now I'm falling asleep in the middle of the day or at the end of the day. This seems to happen in spurts. I get so exhausted just driving! I work at home every day and wouldn't even be able to work a full day in the office. It's ruining my life. I can't seem to find a DR that can't fix this! I've changed primary care. I've tried two endo's and also go to a Natural (but a DO). This is going on five years of this nonsense and seems to be getting worse!!! I'm only 38 years old!!!
Wondering if anyone has any ideas or thoughts!
I also had normal but low thyroid levels and just about every symptom of hypothyroid. Started thyroid treatment in December 2008. I take Armour Thyroid and feel better with the majority of the symptoms except the exhaustion. Thyroid levels are in the mid range now.
I also have low progesterone levels and take a progesterone cream days 15-28 and those levels are normal. Treatment started January 2009. My monthly cycles are now normal with this where before they were 23-55 days in between.
Last year my cortisol levels were looked at. My morning fasting cortisol was 6. I also did a 24 hour silva test and it showed depressed between 4 - 5 and 11-midnight.
I did have a cortisol Stimulation test that came back that my body responded to cortisol. Initial draw was 13.4, after 30 minutes it was 30.5, and after 60 minutes it was 26.7. I really don't think the test was done correctly. I'm scared to death of needles as it is. I had black and blues up and down both arms. The nurse doing the test tried four times twice in each arm to do an IV and after all the ended up manually doing each part of the test.
I feel like I have my hormones balanced. I'm still getting these terrible bouts of exhaustion. It's strange though that I have documented low levels of cortisol and can't help but wonder there is something more going on. I'm really thinking may be secondary AI where I have the pituitary tumor???
But I don't have weight loss issues though... if anything I've gained 44lbs steadily over 3 years. I haven't lost weight, but at least stopped gaining since the hormone treatment. I'm at my witts end and can't keep being this exhausted!!! I sleep 10 hours, can barely get out of bed and don't feel rested, and now I'm falling asleep in the middle of the day or at the end of the day. This seems to happen in spurts. I get so exhausted just driving! I work at home every day and wouldn't even be able to work a full day in the office. It's ruining my life. I can't seem to find a DR that can't fix this! I've changed primary care. I've tried two endo's and also go to a Natural (but a DO). This is going on five years of this nonsense and seems to be getting worse!!! I'm only 38 years old!!!
Wondering if anyone has any ideas or thoughts!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Sounds like yet another frustrating case of no diagnosis. I have been battling the same crippling fatigue all my life, but seriously bad since 2004. It sounds like they have worked hard to get your body back in balance hormonally. Have they ever checked your ACTH level? That is the hormone the pituitary puts out that tells the adrenals to work. Your stim test was great, your adrenals seem to be working fine. Maybe they aren't getting the right signals from the pituitary. That would be my first question.
Other than that, have they looked at you for any auto immune disease? Checked your ANA, RF, CRP, ESR etc. It may be something along those lines, or chronic fatigue syndrome. Maybe you've been through all this already. These things are so hard to pin down.
Vanyel
I looked through my records and I do not see where ACTH has been tested. I've had the CRH Cortisol stimulation test. The only antibody testing I had was Antithyroglobulin AB
I'm really surprised that your endo isn't monitoring your thyroid/hormone function, since they are all part of your endocrine system. Have you asked him to check you. He should be able to test for secondary AD realtively easily by checking your aldosterone (http://www.pituitary.org/library/disorders.aspx?page_id=1042)
Have you considered consulting an endo that specilized in pituitary disorders? I did a search on the PNA and found one in Boston:
http://www.pituitary.org/medicalresources/physician_detail.aspx?phys_id=100045
I can sympathize with you. I'm 34 and it's really frustrating to have to put life on hold because of feeling fatigue. I hope you find some answers soon!
The Endo I see says that the pituitary is very resilient and rarely impacts other functions!!! I did go to Brigham & Woman's to their pituitary unit (found on PNA network) and they wanted to monitor thyroid longer before treating (it was still in normal range but blood work shows it was declining over the year) and to keep on same course of action with the Cabergoline! They really weren't going to do anything different.
With this latest bout of exhaustion being outside of my monthly cycle I'm convinced it's something else in going on. Before progesterone my cycle was 24-55 days long even with prolactin being normalized with Cabergoline.
I'm typically a very strong person but this exhaustion is ruining my life. I literally feel asleep at a stop light yesterday. I have a very busy job and raising two kids on my own that really need me.
Thanks for the encouragement!!! I have appointments next month with the DO and the Endo. Also with an OBGYN because I have precancerous cells with no HPV again that I had two years ago.
I have found that no doctors want to take "ownership" of the fatigue issue ( maybe because it is such a vague symptom and belongs to so many ailments they do not feel comfortable adressing it). I was on stimulants for it it was so bad. For me I FEEL they do more harm than good so I am back off of them again.
I do not know the reasons for these episodes or whatever you want to call them, but you are right they do ruin you rlife.
I was coming home falling asleep on the sofa at 4 PM only to wake up at 6 PM to go to bed! I did find, at least I think it is correlated, that taking my 2000 ius a day of Vit D has helped and i stay up a little later now.
Today however has been a tired day and had to nap twice after work and will go to bed shortly.
It is frustrating..i know and to not know what the cause is is also very frustrating!
My first endo said that is what I have ( and did not do any testing specifically for Addison's..not sure what tests they even do) he said i had enough scans of my head with all of the MRI's i had for the eye so i guess he meant something would have shown up on an MRI of my brain?
the weakness and fatigue( and a lot of other symptoms) started when I was decreasing the prednisone and have continued ever since ( I started Prednisone in Feb 2008). I am on hydrocortisone still even though we were weening me off and I was down to 10/10. Now I am on 30/20 and supposed to stay on this dose well, not sure how long...This dose was prescribed due to this latest setback that started in early July I think...and was by far the worst "episode" yet and the longest, and included rapid wt loss which is new for me ( esp since I gained a lot of wt on steroids).
anyway, I also have other issues, like thyroid and possible peri-menopause, that we are trying to sort out so I am a hormonal mess!
BUT I am back on my vit D every night and have had a really good week this week so I am beginning to feel almost "normal" again!
I find it to be so frustrating when docs focus on a single issue rather than looking at the whole picture. It seems to me that too often they focus on you as a symptom and not a person with real problems that is affecting your life.
Thank you all for the helpful information. I have two kids that really need me, and even with the other hormones balanced, something else is still wrong!!!