Over Memorial day weekend, my 23-year old son spent 5 days in the hospital and was diagnosed as being in an "adrenal crisis." Unfortunately, his doctors did not perform an ACTH Stimulation test before they started administering hydrocortisone and fludrocortisone. (The doctors were not able to consult with an endocrinologist due to the holiday weekend).
At his first visit with the endocrinologist (June 8) he was still experiencing orthostatic hypotension, so she doubled his dosage of Fludrocortisone, stopped the hydrocortisone and put him on Prednisone.
We have absolutely no family history of Addisions or adrenal insufficiency. He has always been very healthy -- engaging in extreme sports -- hikes mountains, runs, swims, body builder, etc. He has a susceptibility to fungal infections and one month prior to this adrenal crisis, his primary care had put him on a rather high dosage of oral Nystatin, which initially brought on his symptoms (extreme fatigue, dizziness, craving salt and sugar, loss of appetite). In the hospital, a kidney specialist wrote in my son's chart that the "Nystatin is the likely culprit."
I am concerned about the side effects of Prednisone. Also, taking it seems to prevent the possibility that my son's adrenal glands might recover.
Since the med changes, the orthostatic hypotension has stopped -- Is that due to Prednisone or Fludrocortisone?
He is considering reverting to Hydrocortisone (instead of Prednisone).
Since prednisone stays in one's system for much longer than hydrocortisone, could he still have an ACTH Stim test? If so, how?
Also, since he is feeling better (but not completely himself) he is considering hiking a mountain this week. Should I be concerned? He has not yet been given the tools or meds to give himself an injection.
I am new to this forum. My son and I are still learning, so any info would be helpful. Thank you.
Welcome here, you are now part of the family....Now...I think we all are still learning and for some of us it will never stop....something came to my mind as I read of your sons situation...okay fungus....exactly which strain.....canadidia..canadidisis...or another name...baby oral thrush...all the same thing...and there are others that do this too. however I do not know the names off the top of my head.....and if nystatin was given then I tend to go with canadidia....anyway what feeds the fungus is the breakdown of sugar....glucose...so has he had more soda than usual, started a new sports drink or supplement? As for the sones....they are all steroids just different forms and strengths.....As you probably already know the steroids stop the immune system from fighting the infection and while on them it is best not to be around "sick people' as our immune function is suppressed.....NO ONE seems to want to dig deeper to find the causeation of the original problem that caused the fungus.....Most times it is inflammation in the body that activates it and through our bodies trying to find and fix something that is foreign, it throws other things off such as the thyroid (has that been cked? TSH) and as well there is something called leaky gut that is not reconized by traditional drs but it all stems back to bigger holes in the jujunun that lines the intestines where the vitamins minerals and nutrients get through to nourish our bodies....an exposure to some form of toxic chemical can make these holes bigger and then things unwanted in the brain can bypass intestine out to toilet path, and get into blood, at the molecular level, go to brain and cause unusual things such as becoming very suseptable to fungus.. and then the sugar feeds it....One thing I have found is since I stopped all gluten....I am feeling so much better and the infections in body have lessened and then so did the fungus.....Has there been any type of exposure and a question for you to have him ponder on.....Does he POO EVERYDAY? WE SHOULD...and if not does it REALLY STINK when he does?...Sometimes I wanted my nose to be down the street while the butt was busy...anyway, just some things to think on...I will pray that you find your solution...Keep us updated..Have a wonderful Blessed Day!!!!! GOD BLESS!!! loimmarmar
Since he had a crisis, they probably don't have to administer the ACTH stim test - but now that he is on meds - and lots of meds at that, the test probably cannot be done...
I am not sure the nystatin is the culprit - look at the list of his symptoms - they are, in fact, a list of AI symptoms even having the low immune system and the fungal infections. Craving salt is a biggie - his body wanted what he needed.
The POTS was resolved in great part by the florinef (fludrocortisone). I take it as well as I have POTS too.
Pred is a long acting steroid and lasts much longer than a normal day - in such, it means the body's bones and muscles do not recover. What dose is he on? 5mg or pred = 20mg hydrocortisone but the body uses it very differently.
Your son can hike once is completely well and he has the emergency shot and kit set up (I have some links in the health pages you can read to help guide you as well) and he should be with someone who can give him the shot. He should have a medic alert bracelet or tag, keep hydrated, not take chances etc as he can die. He may also want to consider salt tablets if he craves salt. This is a life long condition and he needs to understand that he has to respect his body or it will not respect him and even small illnesses can get out of control fast.
He should be under the care of an endo. Did his test show low sodium and high potassium during the crisis? Will be be able to identify the symptoms enough to take meds if he is on a hike? Is someone with him conversant with AI and a crisis? For instance, one of my symptoms is that I get confused so that I don't think to take my meds! So my husband has to take over and guide me. So when I am with people who don't know, I tell people if I act funny or get hurt to call my husband then 911 (most states do not allow EMS to give the solu-cortef shot to save our lives!).
Thank you for your kind welcome and response. To answer your questions: (1) his fungal infections were candida. He seemed to keep picking them up at the gym, which isn't all that clean. When they just wouldn't go away, his primary care suspected systemic candida, so she put him on a high dose of Nystatin for a month, which immediately caused all the symptoms that relate to adrenal insufficiency. (2) He was drinking a lot of the monster energy drinks and he was taking whey protein for a couple of years, and stopped about 6 months ago. (3) The endo told us on the initial visit that his thyroid was slightly off, but not a lot. She wants to re-test. (4) His job for the past 3 years exposed him to toxic chemicals every day.
It has been one week since his med changes -- to 5 mg Prednisone in morning and fludrocortisone in late afternoon (I think -- I don't know dosage off top of my head). He is feeling better. No symptoms of POTS this week. In fact, he hiked a fairly small mountain in NH with his Dad yesterday and did well. He likes the Prednisone because he only has to take it once per day.
Those in this forum may feel i am in denial, or some may have had these same hopes, too. I apologize in advance, but I am not convinced right now that this is life long. We have no family history whatsoever of Addison's disease. I am 62-years old and I have had doctors tell me things about my own health that were proved very wrong. When I was a child my parents did not believe in conventional medicine whatsoever. I have studied and used homeopathy for over 30 years, very successfully. Obviously, we still go to doctors, and it kind of upset me that my son was prescribed so high a dose of nystatin (which made him very sick). But, to be honest, nothing else seemed to stop his candida, either.
I have always been very opposed to steriods, but my son was in a life or death situation and under those circumstances you let go and trust that the doctors have to give these drugs to save his life. I have never seen my son in such a horrible condition. He has always been so healthy.
Anyways, I apologize for this being so long a response, and I sincerely appreciate your thoughts, etc. The chemical exposure question you raised is interesting, as I had sensed for the past year that he was being affected. I asked him this morning if he had always used the protection the company provided and used extreme care, and he admitted that there were times he was "exposed."
I can't believe how wonderful the people are in this forum.....especially your involvement and kindness, rumpled, in responding to questions. Since my original post, I have looked through the pages here and read many of your responses to people. You are very knowledgeable and kind. And, I thank you. I hope that you will also read my response to loimarmar (above) as I provided more information in that response.
The reason why I suspected the Nystatin (and so did the Kidney specialist) is because: I had read on many places that fungal infections can cause adrenal problems. Then, on top of that, Nystatin can cause havoc with your kidneys and adrenals. The kidney specialist agreed.
Also, my son did not have ANY symptoms of fatigue, pain, salt craving, severe dizziness on standing, etc UNTIL he went on the Nystatin. After two weeks on that drug, he looked and felt absolutely terrible. I insisted that he stop taking it. So, he did. Within a few days, he went back to feeling normal.
He had spent 6 months preparing to hike the Pacific Crest Trail (and working), so he was very stressed. He went out to California and was homesick and was not able to carry 40 pounds (of food and water) in the desert. He was not used to carrying a pack, as he's always done one-day hikes of 4,000 to 5,000 elevation mountains in our State. He came home.
After a few days home, he started taking Nystatin again, and after a few days he told me that he was taking it and that he was feeling horrible. Again, he stopped the Nystatin, but that time he did not "recover." Things went from bad to worse, very quickly. After 10 days, we were sure it wasn't any kind of virus, so we forced him to go to the emergency room. His condition, by that time was life-threatening.
Yes, his potassium was high. His sodium was very low and his kidneys did not start retaining salt until they administered hydrocortisone. The doctors kept him in the hospital for 5 days because they were concerned that his salt not rise too quickly.
I am reading, in several places, that there is more concern about the side affects of prednisone (vs. hydrocortisone). And, because hydrocortisone "mimics" the cortisol our bodies normally produces (if adrenals are working) it is safer. Yes, hydro has it's own issues -- a person might not feel as well as they would on Pred because it doesn't last in your system as long.....and you have to take more pills.
I also think that the Endocrinologist is concerned that my son has always been involved in extreme sports, like hiking mountains. And, she is aware that he intends to continue hiking mountains. So, she wants to be sure he is more "protected." That may be the reason why she switched him to Prednisone, which stays active in his body longer.
She also mentioned that he probably should be trained in giving himself an injection and carrying one with him, especially when he hikes.
We have ordered a medical alert tag / necklace. He won't wear a bracelet.
I am concerned about what could happen to him when he is hiking. He has always been a solo hiker, which as a mother has always driven me absolutely crazy...but, this isn't about me. I can say that during his first "adrenal crisis" he experienced over Memorial Day weekend, he was very confused. Would he be able to recognize that he was going into a "crisis?" Right now, I have to honestly say, "I don't know."
I am not even sure he fully understands that he could die. Since he's not really attempting to do research about this, I kind of feel he's in denial, but I may be wrong. He's very intelligent -- truly a great person, and I am not saying this just because I am his mother. On the other hand, he knows that increasing his salt is something that can help when he's hiking.
I'm also looking into a Spot GPS for hiking. This came on us so fast and his leaving his job has also left him uninsured, which we're also trying to deal with. Yuck.
So, I guess i'm still not convinced that this is "life long," based on the precipitating circumstances, lack of family history, and my own beliefs in God and alternative medicine.
Maybe I AM being naive, or hopeful, or nuts.
(1) I am just not ready to accept that this is definitely 100 percent Addison's.
(2) and if taking Prednisone (vs. Hydrocortisone) relegates him to having a life long illness, I don't want that to happen, if we can prevent it.
thank you for your help and support. I AM keeping an open mind, so please do not hesitate to respond with any of your knowledge, support or help.
Just want to lend my support to you. I've only been coming to this forum for a little while, but it's proved to be an invaluable spot, rumpled and others have so much to share in knowledge and first hand experience.
So you feel a little naive, that's ok, you get to learn new things if you are open to them. You feel a little hopeful, that's good too, it's what keeps most of us going. And it's good to be a little nuts, the ability to laugh and not take things too seriously is pretty good medicine in and of itself.
To speak a little on the systemic candida issue, it takes adhering to a strict diet for a fair length of time, to wipe it out. So if your son is serious, it can be done without strong meds, but most people can't change their diets that radically, or get through the yeast die-off which feels terrible.
NO sugar, which means ALL fruit and some vegetables like carrots and beets are to be avoided. If I remember, you can have green apples.
NO wheat, no bread, no pasta, no pastries etc. Check all labels because they use flour in a lot of packaged goods, even as a binder or thickening agent. I use quinoa spaghetti for my pasta and I honestly couldn't tell the difference from wheat for taste and texture.
NO dairy, milk, butter, cheese. Again, read labels. I did allow myself plain yogurt which has surprisingly 12g of sugar per serving. But since it has some beneficial bacteria in it, and since I used it for my salad dressing, I treated myself to this one exception.
NO caffeine. Not sure why, but its a no no. Beware of the withdrawal headache.
NO alcohol, I expect for the sugar content. NO root vegetables, no corn or corn by-products, no peanuts, no vinegar. OMG what can you eat? You'd be surprised. I'm sure you can find lots on the internet for candida free diets.
Sometimes it is hard to accept a diagnosis. First step is to make sure it's correct, next step is to find out if it can be treated. About two weeks ago I had one adrenal gland removed because it was thought, a tumor on it was over-producing cortisol. If it was, then my other adrenal gland would have become non-functioning.
But I'm doing a very quick taper. The day after surgery I did 70mg hydrocortisone, then 50mg for two days, then 40mg for a couple of days, 35mg, 30, 25, 20, 17.5, 15mg for a couple of days. Today I'm trying 10mg, so far so good. Saturday I'll do the same. Then 5mg on Sunday morning. Since hydrocortisone only lasts 24 hrs in your body, I'm going to try an ACTH stim test on Monday morning, if I get increased cortisol, it will all be me. Endo agrees.
I'm not sure the reason to RX one steroid over another, HC is fast acting but short lived compared to prednisone. If HC wasn't working then I would understand. But if your son's goal is to taper and test, HC would be a better choice.
Based on his doctors advice, I would say he should try to recover and feel better for a little while before getting back to regular activities. Of course, surgeon's advice didn't stop me from doing some renovations and gardening two days out of hospital. Rumpled described being on steroid as feeling like the hulk. I felt all of that.
Being that your son is driven to do extreme sports it will be hard to convince him to slow down. I can understand it a little. When I was much younger, I hiked the West Coast Trail of British Columbia--that was on my honeymoon. I'm a little less adventurous now.
Read as much as you can. One thing I learned here was that you have to know almost as much as the doctor does about this condition, because its easy to get the wrong diagnosis, wrong test, etc.
I just wanted add something re Prednisone vs Hydrocortisone. Being a pituitary patient and involved in that community for many years I am well aware of the needs of secondary AI patients.We have the option to take Hydocortisone, prednisone or dexamethasone (low dose)
It really is a personal preference to match up the right med with your own issues such activity, stress levels and even age . The key is to try and not take more than you use up. This is to avoid steroid induced Cushings. A lot people prefer prednisone and you can get 1 mg tabs. I know many who take 4 mg for example.
I find that the pred stays in my system too long and affects my sleep. But I am 47 year old SLOTH. I sleeps 10 or more hours a day, and when I am up, I do mostly quiet activities!!! So maybe i just don't burn off the pred?
I am not a mountain climber or extreme sports person.
So i think that this needs to be taken into account for your son.
Wow, I just spent awhile reading and LEARNING...There is so much I want to say right now but I'm tired as it has been a day of research, reading and typing...to make it quick....Most of this is me.. and it will now explain a few things that were unexplainable and who ever wrote about us knowing more than the drs...YES!!! now I have read some abbreviations that I do not know what they are or mean,... however I will.......IN my case...IT ALL LEADS BACK TO THE EXPOSURE of natural gas in my apartment for those 3 1/2 years.....Apparently though...IT can't hurt you, just blow you up or asphicate...... What was your sons exposure to...if you want to share.....Thank you all for sharing your most personal things, minds, hearts, wisdom, eyes and time.......And by the way you 47 year old that put her 2 cents in...I think it was more like 3, and oohhh to be your age once again.....YOU ARE YOUNG....YOU HAVE TO BE because I AM NOT that word you used, and I am not that word... more than you....There see if you can follow that you young lady you....... Have a wonderful Blessed Day!!! GOD BLESS!!!! loimmarmar
Systemic Candida syndrome is a total falsehood and your comments on the diet are yes in print and internet but without ANY scientific basis.
Sandylake, the advice you get on thi internet is worth what you paid for it sometimes, your concerns can be addressed by a qualified professional who will not sell you crap, even if it is what they believe.
Hello Sandy: I came across your blog by accident and found the story of the young grandson who experienced and adrenal crisis after taking Nystatin fascinating. I have experienced several adrenal crises in my life, one of which was nearly fatal. I have also used Nystatin to treat a systemic Candida infection. It took me nearly 25 years of ill health to piece the puzzle together and get to the source of my illness. Mercury poisoning causes the body to store very high levels of copper due to inactivation of metallothionine in the gut. Once the copper levels rise high enough they are no longer bio available to the body. Copper is nature's fungicide. Bio unavailable copper causes yeast overgrowth. Consumption of high sugar foods ( like energy drinks among many other sources) acidifies the body rendering it a fertile environment for yeast to flourish. It is now well understood that the body actually uses Candida to sequester and remove from circulation unbound mercury in the gut. Add a large dose of Nystatin and you can release profound amounts of mercury into the gut and therefore into the bloodstream. This sudden release of large amounts of mercury can dramatically suppress adrenal function, triggering an adrenal crisis. In my opinion, from 20 years of personal research, this grandchild needs a hair analysis to look for a deranged HTMA mineral pattern ( mercury levels will probably be low) . Run this test through the doctor who sells and invented Chelorex ( forgot his name but he is a neuro surgeon who himself was mercury poisoned). Her does a free consultation with each HTMA. Good luck!
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