My son has secondary adrenal insufficiency, due to a pituitary tumor that caused severe hypopituitarism, including low ACTH, as well as low TSH, LH, and GH. (The tumor was removed last Oct. He also has shortness of breath, even though he has been on Thyroxine and hydrocortisone (now on dexamethasone instead) for 3 years.
Since his diagnosis and symptoms involve the pituitary, he has never had a DHEA level, or even aldosterone, T3, and other related hormones. I think the docs expect his adrenals and thyroid to be okay, because they should only be reacting to the low pit. hormone signaling.
But I'm not so sure. I think he may have adrenal atrophy, as he has severe orthostatic intolerance (he can't stand up for more than 1 minute, without getting weak and dizzy, and this has been going on 18 months) and shortness of breath and tachycardia whenever he moves more than a few feet. Also when he laughs, he gets short of breath. He has also gained a lot of weight on the hips and stomach, even though he isn't eating much. He is only 14.
The docs don't really help much with this. I told them he has dysautonomia, and they agreed, but don't know what to do about it, except to suggest I take him 2000 miles to an autonomic dysfunction clinic!
I am still trying to figure this all out myself. We just saw a cardiologist who didn't even examine him (other than listening to his heart). His pituitary medical history always stops the docs we go to from looking much further. He doesn't seem to have any heart abnormality anyway, so that's good.
I think it all has to do with impaired cellular metabolism and cellular oxidative stress. I've gone over all of my son's tests again, and found much research to support this idea. So now I just have to figure out how to get enough glutathione and other antioxidants into him to do him some good. It's not easily correctable, but I know now what direction we need to go in. No wonder the docs were scratching their heads. This is a problem for a metabolic specialist involved with cellular medicine.
Of course, your problem may not be the same as my son's, but I'll bet you need glutathione also.
I too as well have been suffering from Smidts Syndrome. I was diganosed three years ago after suddenly becoming very ill. I had a severe case and spent a week in the ICU and nearly loss my life. Since then it has been a very hard struggle for me, I am always sick, something always hurts and I feel like its never going to get better, they just push more drugs on me. I am currently on 200mg of steroids a day, at this rate I am gaining 10lbs per week. I feel as if there are no answers and have no one to turn to...
You are gaining due to the high amount of steroids. The doctors need to wean you down as you now have steroid induced Cushing's syndrome from the corticosteroids. Steroids have to be balanced - too much and too little are bad and both ends effect the immune system.
Are you seeing an endocrinologist? Are you on thyroid meds as well? Florinef?
I was just told I have Addisons in April and am taking 6 Hydocortiosones a day if I spelled it right...I can't walk from one room to another without being out of beath...I hate it...I am on line everyday researching this disease..I read about people living nomal lves with this disease and people running and doing difference things and I am trying to figure out how they are doing it... I am so out of breath just trying to do anything is a chore for me I am asking how anyone does things with this disease ....I would love to know...They say you can live normally HOW?????
6 pills - how strong? (they come in 5mg up to 20 and probably more!)
There is a way to take the medication that can more clearly imitate a *normal body* and other ways that will or can actually make you worse.
As Addison's is a salt wasting disease, you may also need more salt, and you may need another medication to help you hold sodium. You may also need other hormones - it all depends on your testing. Did you get copies? It is very important to get copies to see where you are.
You can take too much (sometimes doctors don't realize) and give yourself steroid induced Cushing's - and sometimes too little and stay sick. So you have to balance. As for normal it is not the old normal, it is a new normal and you have to learn a new body and new things.
You should also have emergency medications, know how to stress dose for illness etc. There are links in the health pages that should help and feel free to ask more questions.
I was diagnosed with AI in April...... I too am wondering how in the world people exercise with this!! How they live "normal" lives! So far, even on meds! I have the same symptoms...... Well, I don't sleep quite as much, but that is the only thing that has improved
Yes,I too have shortness of breath. I can just be sitting in a chair, doing nothing, and sigh..... Have to take a deep breath etc. I have also had what I call yawning episodes--- chronic yawning and yawning.
Hi everyone, I have this issue too. Severe dyspnea even at rest to the point where holding a conversation without resting every few words is very difficult. I also sigh a lot from being breathless. I haven't yet been diagnosed but my doc suspects adrenal insufficiency.
I wonder if it is due to the high heart rate? If you don't have enough fluids and your sodium is low, you can have a racing pulse and that can cause issues.
I would make sure you have enough sodium - this is a salt wasting disease.
Exercise is difficult. Sweating causes us to lose sodium which is an issue. Fatigue is also an issue. So you have to change how you exercise. And make sure you replace the sodium you lose. Water is fine as you need fluids, but you need sodium too.
For 28 years I thought I had severe asthma--I even had the 3 bronchial thermoplasty treatments in 2013 (with no improvement). It was never like "normal asthma" as I was always compromised and would get a little relief from bronchodilators--I could work out (with difficulty) for most of that time using a lot of those meds. But I was always compromised and would only go from bad to worse (respiratory failure/status asthmaticus). This past May I stopped the inhaled meds, and by default had to be on prednisone (I was able to wean myself to a fairly low dose 7.5-10 mg per day). Recently after much pleading, I got my primary to check my cortisol level--she then wanted me to go onto hydrocortisone (30 mg per day taken in a split dose). She has yet to test which Addison's I might have or my aldosterone (which I know is low, because for longer than I have had "asthma" I have had trouble holding fluids. I must supplement the 30 mg hydrocortisone with 5 mg prednisone and take something at least every 6 hours (more frequently with the HC). I have only been taking the hydrocortisone for about 1 week, but seem to be getting through the night without waking as frequently (not sure if the waking is from the wheezing or the water loss).
Though my breathing had been very compromised (lately 20% of normal function--based on peak flow readings), since age 22 (when I was diagnosed) I had been able to work out. It has only been since my 50th birthday, that I have not been able to do so and the underlying problem has surfaced because I went off the conventional meds (which I believe only worsened the "asthma" because of the twitchy, sensitivity they can bring on). I am hoping that after I get a definitive diagnosis and get on all the adrenal hormones I may be lacking, that my lungs will have a chance to normalize a bit, and I will be able to work out once again.
I have addisons and Hashimotos. I cannot even get out of bed to use the restroom without getting so winded that I almost pass out. My heart feels like i just ran the hundred yd dash and pounds so hard. I almost lose unconsciousness on a daily basis and the pain geels like i have been in a severe car accident. Has ANYONE FIGURED OUT HOW TO FEEL BETTER!!?? I am going to end my life very soon if I cannot find a way to end the suffering. PLEASE RESPOND IF YOU CAN HELP. THANK YOU.
My cortisol was 0.9 which isn’t even a 1. I’ve been battling this since 2012
I have adrenal insufficiency . I have had this since 2012. I have gained a lot of weight also. I am taking the same drug . My cortisol last month was 0.9 . It was even 1 So it wasn’t even on the chart so to speak... I hate every minute of this disease. I also have Wilson’s disease which is a liver disease and it too is a very rare disease so I battle two very rare diseases.
Out of breath can be metabolic acidosis. Your autonomic nervous system is alkalinizing your blood by removing as much CO2 as possible. I have Addisons and hypothyroidism. I take 1/4 tsp of sodium bicarbonate (baking soda) and wait an hour. That usually takes care of the out of breath phenomenon. I check my urine pH with a dipstick and if it's alkaline I don't take any more sodium bicarbonate. Too much can put you in alkalosis.
From a case study: "The metabolic acidosis is due to insufficiency of aldosterone, which decreases acid secretion in the kidney. "
This leads me to wonder if more florinef would help. Florinef is the replacement for the missing aldosterone in Addison's.