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Thread: Adrenal insufficiency

  1. #1
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    Adrenal insufficiency

    Have any of you CFers developed Adrenal Insufficiency? My DS appears to have, probably from too many steroid medications. I would love to hear about the CF experience with this, including if it resolved with treatment.

  2. #2
    No responses yet so I'm guessing not too many CFers have experience with this? I don't know much about the topic either.
    Just curious: what were your son's symptoms and how is it being treated?
    Good luck and hope the treatment is successful.

  3. #3
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    stylecomfy thanks for your helpful answer.

  4. #4
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    Symptoms: sudden weight loss, fainting, tingly feeling in limbs, brown spots on skin. They are not yet treating it effectively. It was diagnosed based on low cortisol levels.

  5. #5
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    Yeah, adrenal insufficiency and all other stress hormones can overwork the systems producing them with chronic illness. My experience with endocrinologists has been sketchy. Historically, endocrinologists have added years of education, rivaling the most educated of all doctors. I have a theory that some, at least, would like to go to school for ever because they really don't want to treat patients. In other words, smart but not quite social animals.

    Adrenaline, aldosterone, cortisol, testosterone, estrogen and progesterone are all stress hormones made by and excreted from the endocrine glands CF is liable to gum up. Throw in the thyroid, parathyroid and pituitary gland the recipe for problems of dysfunction is nearly complete. Add unrelenting stress and the whole thing soon is out of wack. We are diurnal in our days with a wake cycle and a sleep cycle. Cortisol is the same as cortisone, except we make the former. Our cortisol level is the highest when we wake up or around 6:30am. Cortisol is measured in an adrenal insufficiency diagnosis and it's hard to get a very early sample.

    I attend a CME course every other month on a variety of topics and the best lecture I have heard on HRT (Hormone Replacement Therapy) was presented by a pharmacist named Rudy Dragone. Rudy doesn't represent any products, has no sponsors but realized one day that the most overarching drugs in the pharmacy are hormones that we make.

    Dr. Dragone has shared his findings with the world. Google " bioidentical hormone replacement therapy. Rudy Dragone-YouTube". He has several ~15 minute lectures on different aspects of the subject. This is current and reliable information, not all of his videos are under the exact titles but I tried it and got all of his videos.

    I can't believe how hard my adrenal glands work. At times my kidneys would/will just burn from the adrenaline being drained through common blood vessels. It's difficult to describe something that you can only estimate the effect of the adrenal glands working non stop. I don't think that adrenal insufficiency is untreatable or incurable although it might not always be reversed.

    Hormones are complicated which is why endocrinologists have to know something about the biochemistry of everything. My beef with them has been the high voltage so many CFers are plugged into. This is hypermetabolism, except it isn't according to tests. The pituitary puts out a certain amount of a hormone and the thyroid gland puts out a corresponding amount of hormones and that's what normal is. If something is driving the pituitary gland, like chronic illness, what do you call that?

    Watch the appropriate videos by Rudy Dragone and hopefully you will be educated and know how to direct your questions, resulting in a treatment. Doctors don't find Dragone's material beneath them. It's typical of CME courses.

    LL
    66 yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism appears to be virulent.

  6. #6
    Adrenal insufficiency is a pain in the butt..... in a nutshell, when your adrenal glands aren't working right everything is harder. It's harder to heal, to clear congestion, you are more tired, VERY emotional extremes, plus it can mess with blood sugars when you add in additional steroids as treatment. My son has almost no adrenal stuff when they do blood work to test his levels. We are currently on a maintenance dose of 15mg 2 times a day of steroid pills. When he's getting sick, we do a stress dose and jack that up to about 30mg 3 times a day and taper back down slowly or we get a rebound. It's really totally guesswork to decide how much & when to give steroids as we still want the body to try to produce its own and too much steroids means blood sugar goes wacky and my son has to go on insulin shots.

    I'd say keep monitoring it, look for extreme high & low energy/moodswings and if your kiddo isn't healing as quickly as usual, suggest trying to supplement with some pills, but make sure to pay attention to how she/he feels. good luck!
    Christine, mom to Joe 17 yrs with CF, DDF508, and Lizzie 20 yrs no CF

  7. #7
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    Treasuregoddess -- was your son born with AI or did it develop from therapies with steroids? We are having some difficulty determining when he needs a supplement and when he is OK -- especially since it is hard for him to tell how sick he is at times. He pretty much has a sinus infection most of the time, so that seems to be his baseline, but sometimes it gives him adrenal symptoms.

  8. #8
    fel - my son developed it around 15 years old. We really didn't use a lot of steroids until then, so not sure if it was caused by the steroid use or just general deterioration of stuff. He's also been pre-diabetic for CFRD since he was around 12. Once in a long while during a hospital IV stay we'll have to use insulin shots, but it's pretty rare (maybe once every couple of years). I think his adrenal gland just got worn out with his tons of sinus infections too.....

    One good thing is since he's been on Orkambi, Joe's had way less sinus infections, but we still have to have a maintenance dose all the time of steroids... ugh.

    Good luck!
    Christine, mom to Joe 17 yrs with CF, DDF508, and Lizzie 20 yrs no CF

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