Discussions By Condition: Rare Disases

Adrenal insufficiency or?

Posted In: Rare Disases 7 Replies
  • Posted By: Anonymous
  • October 21, 2007
  • 08:57 AM

Help- 18 year old boy admitted to hospital with what we believe now was a adrenal crisis, nausea, vomiting, acute stomach pains, over the next three weeks is in and out of hospital drops 18kgs all symtoms point to a crisis, doctors don't see connection. His dads ring family all around the world, telling them he hasn't much time left.
This was over four years ago!.
I met the dad 8 months ago, the story he told me of the past four years you are not going to believe- just when he though all was lost the boy got better, after a week he was nearly 100% but 8 months later again nausea, vomiting severe weight loss, this time it lasted just on 2 weeks and he got better. 1 year later his mental state, starts to deterioate, .
and slips into a third crisis but not so severe this time, nausea, vomiting. weight loss which doesn't go away but instead comes and goes, some time after this psychosis kicks in, dillusional, agitation, agression, hallucinations, and doctor asks "have you done drugs recently" answer "yes" and its like the doctor go ''well there you are,drug induced psychosis".
Put onto olanzapine 10mg, solian 400 , benztrop 2mg, was still on it when I first met the father, the thing was the boy, well man now was still suffering from nausea and vomiting, sometimes bad, some times not so bad, weight would go up and down. The thing was no one was regulating his meds trying different meds, cause he was still dilusional, agigated, some times aggresive, sometimes having hallucinations.
At this stage I only knew about the psychosis, and I offered to look into the medication- well solian 400 stood out, side effects nausea and vomiting for some people, the dad decides to take him off it and benztrop, I suggested he talk to his doctor first, but he didn't- 1 month later no change, maybe it was still in his system
Then something happened but not what you would think-The dad saw a TV program about a girl who died from undiagnosed addisons desease, the symtoms were the same, down to the salt cravings, even putting salt on salads, he told me about the years pryor to the psychosis
I did some research into addisons desease, well the first thing that hit me was, if he suffered a crisis, you dont get better without treatment
So I asked the dad a question that no one had ever asked "Did you give him something?" he replyed "Yes I did" apparently after 3 weeks into the first episode, with all things seeming to be lost, he couldn't hold any thing down, not even water, they got this powder into him called 'Inner Health Powder' available here in Oz, in his words "A little at a time" he started to improve so they gave him more and more, a lot more than the recommended dose. within a week he was nearly 100% as I said before, 8 months later the same again, after two weeks "hey, that powder worked last time lets try it again" and it did. so the third time did they give him the powder, no they didn't.
Whats in the powder?
Acidophilus, Bifidobacterium and Colostrum.
The only connection I could find was addisons and colostum
Some doctors out there say that a hormone in colostum can regulate a over active or underactive immune system or maybe because bovine colostrum has powerful antibacterials and that the boy has a bacterial/fungal problem?
or an enzyme, licorice root was used once to treat addisons desease- I don't know
To the doctor they went for blood cortisol test, guess what "normal"
An morning reading of 497 from memory, they asked to be refered to a specialist- waist of money all he wanted to do was focus on the psychosis,
asked no questions, apart from "what do you want out of life" to the young man, HELLO!
All seemed lost, what next?
Then, one evening four months ago, the young man gets upset dillusional, agigated, I must add he was back on the meds again but the olanzapine had been increased to 30mg solian still 400mg and epilin.
Well the vomiting increases, cant hold anything down, loses about 8kgs in 3 days, bounced around psyche wards around the city-cause it must be drugs, yes marijuana was a problem but not a big problem, the boy said it made him feel normal? when I first met the dad he said drugs weren't the problem, I said boys lie, get him drug tested, he did came back negitive for THC and amphetimines.
So he's in hospital, they can't see past drugs and psychosis,I told the dad to ask for another cortisol test, ACTH test, Before the window closes, or at the very least try hydrocortisone and florinef, if he gets better their is a problem
well they didnt, two weeks later they did the test, guess what-"normal"
apparently.
Where to now?
Four months later and to present day, he is still in the same psyche ward, one nurse saying "He doesnt belong here, he's not like the others"
The vomiting did subside to occasionally, he hardly eats, I think for fear of vomiting, and I must add he showers a LOT, says his skin is hot, prickly.
I believe the doctors are going to take him off the meds, probably cause they are not working.

Doctors here in Australia dont seem too link psychosis and addisons or is it something else?
Public health system in oz is a disaster, and the fact we cant get anybody to listen
I know I havent given you much to go on, as in medical test results, hard to obtain here.

Any Ideas?

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7 Replies:

  • I have addison's and the skin does not get hot. The body will lose it's temperature and you will get real cold. I'm talking like being in the Atlantic ocean in January. Phsychosis is a symptom of adrenal issues and many of us get passed off to the physc before the disease is actually diagnosed. I don't think the vomitting would stop if it was an adrenal crisis and if it was with in 40 minutes he would of slipped into a coma. Blood pressure-low is a good indicator for addisons especially in a crisis. Mine have been 70/30 during a crisis and have felt like just passing out and leaving. Usually once the crisis starts it does not stop and will leave one dead within 40 minutes. Now if the patient is taking licorice then this would explain the normal cortisol levels. For the licorice makes cortisol in the kidneys not the adrenals and extends the life of cortisol in the urine. So, if he's taking it you might encourage him to stop for a bit then do the ACTH and cortisol. The other factor here is if he's taking licorice then he could be taking way too much and his body could be toxic. No more than 600 mg daily should be taken/ less if possible. Also if the blood pressure is a bit high then the licorice stands well to prove what purpose it serves. Also it elevates blood sugars a bit. Hope this helps. My advise would be get off the licorice and then do cortisol. The patient should not be taking licorice unless they have reason to. Addisons has not been diagnosed at this point so why would he take that. It's a powerful herb and it does work-becareful with it.
    Anonymous 42789 Replies
    • October 21, 2007
    • 10:31 PM
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  • You need to note the times here that the cortisol drawl is being done. It must be 7-9 in the am. Or 3-5 pm. Any other time is a false reading and very inaccurate.
    Anonymous 42789 Replies
    • October 22, 2007
    • 01:08 PM
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  • The young man is not taking licorice, what I meant was-This was used as a treatment for addisons desease 100 years ago, or there abouts.I was asking could it be an enzyme deficiency like 17hydroxylase, 21hydroxylase deficiency.Is it possible he has a mycosis, their is a history of ongoing/unresolved lung infections pryor too and after the first episode, the parents tell me the doctors put a endiscope down his throat, found nothingThe family doctor by the sounds of it, would prescribed antibiotics like they were lollies. Which maybe leads to 'leaky bowel syndrome', candidiasis? I should add-Addison desease is brought on by an stress, accident or a death well tick two of these- The young man had left school and was starting a traineeship, vary stressed the parents tell me, and then an uncle which he was VERY close too died suddenly, soon after it started. I asked the parents if they had seen any skin colour changes they had round his eyes and lips.The young man is dark skinned of portugees/ mozambiquain origin,but these areas they said, had got darker.His blood cortisol tests were done at 8am.The question I am asking is- four years ago, the first episode, Does this sound like a crisis? or what else could it be?
    Anonymous 42789 Replies
    • October 23, 2007
    • 05:45 AM
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  • I've had four adrenal crisis in the last two years. I'm telling you if he'd crisised he wouldn't of made it. There's no way, unless they gave him some type of steroid while he was in that state. The other questions I plain don't have an answer and your best to talk to the doctor. And please don't tell me you are a nurse because you wouldn't be asking the question. I know the reasons for possible causes for addison's. You forgot to mention TB, auto immune diseases, chronic respiratory like pneumonia can or may cause the adrenal glands to give out. Also chronic use of steroids such as inhalers for asthma can shut the adrenal glands down. Also brain tumors and adrenal tumors would surely be a factor here. So, you stated that there are lung issues going on here so it's a possibilty adrenal issues might come to play here. But, a full blown crisis no he would of died. They don't know all the reasons why for addisons they can only suspect a probable cause. There is no cure- so once he had a crisis he would of been on steroids. Yes, you mentioned 8 am draw- good. Many doctors fail at that point and the patient gets passed off to someone else like a psych. And until something bad happens or it's too late then they find it. So, what was his drawl??? If it's normal he doesn't have it. You also don't sound like this is your child so who are you to diagnose him???
    Anonymous 42789 Replies
    • October 24, 2007
    • 00:19 AM
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  • Adrenal Adenoma, Conn Syndrome (Also check out Cushings Syndrome) In November 2005, I began to have dizzy spells. I went to the doctor and was told that I had high BP and that was the probable cause of my dizzy spells. I am not severly overweight, but I began watching my diet more closely, and lost 20 pounds, however, my BP was not any better, in fact it was getting worse. I began medicine. I ended up in the hospital twice because of too high BP. When the medicine did not stabilize my BP, my doctor began to search for other possible answers. Many doctors won’t do that these days, they just prescribe more pills. My doctor sent me for a CAT scan of my kidneys. The CAT scan showed no problem with the Kidney, however, it did show a tumor in my left adrenal gland which sit directly above each kidney. One of the functions of the adrenal gIands is to regulate your blood pressure through secreting aldosterone and cortisol. The tumor in my left adrenal gland was causing the adrenal gland to over produce the hormone aldosterone, while the right adrenal gland, which was normal, was underproducing aldosterone in efforts to try to help stabilize my BP in my body. My potassium levels were very low, my rein blood levels were low, frequent urine output all night long. I was immediately sent to an endocrinologist. For 8 months, I had extremely high blood pressure (average nightly 197/115) and I was on 8 pills a day trying to control it. After months of tests, (including an adrenal vein sampling) my endocinoloigist confirmed Conn Syndrome. I had a tumor that had probably been there for many years prior, causing mild up and down cases of high BP which I controlled with exercise and diet (no meds), but in the fall of 2005 for some reason that tumor began to grow. Also, equally as frightening to me was all the terrible migraine headaches that I use to have for years and years. I have not had a migraine headache since my adrenal gland was removed. I have to wonder if the headaches were connected with my BP going up and down. In June of 2006, I had surgery to remove the left adrenal gland containing the tumor that was causing my Conn syndrome. Since my surgery, I have been weined off all my medicines except 1/’2 of a BP pill daily. Unfortunately, during that 8 months of extremely high blood pressure, I developed a slight problem with my heart which caused diastolic dysfunction which is why I still require a BP medicine.
    Anonymous 42789 Replies
    • October 26, 2007
    • 10:59 PM
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  • Who am I?. I am a work colleague, I am a friend of the father, I am a friend of the family, I am a father to, This young man is dying- fading away in front of the parents eyes. The hospital says he is in the right place, but they can see their son is getting worse. I see the pain on the fathers face, he has asked for my help, I am doing what I can. They are living a nightmare.We thought we had a clue, systoms so simular to addisons, but always a negitive result. I dont know what his Drawl is. Who is anybody to diagnose others in these forum- People trying to help!thats who.After reading this thread, the parent told me he is showering cause he is cold, not hot. but he does sweat occassionaly for no reason, they're sure he didn't sweat before the psyche meds.
    TerryG 120 Replies
    • November 4, 2007
    • 07:36 AM
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  • He could be insufficient and still have these problems. What I am trying to say is that he might not have been in a full crisis. And even if he was, an addisonian crisis can be fatal, but isn't ALWAYS fatal. It could aslo be that the symptoms he has is caused by something secondary... Have you looked into hypopituitarism? The symptoms of adrenal insufficiency usually begin gradually:chronic, worsening fatiguemuscle weaknessloss of appetiteweight lossnauseavomitingdiarrheaThe body works in mysterious ways.. thats for sure! It's hard for me to give you any advice not knowing what his labs looked like at the time. What kind of drugs was he doing?Serum cortisol is normal, do you have the numbers with the ref. range?Has his cortisol been tested when he is symptom free?Has he had a CT of the adrenals (to look for adrenals have any signs of calcium deposits) and an MRI of the brain to look for changes in the pit. size (often seen in secondary adrenal insufficiency)?Has he been tested for any kind of liver disorders? It's alway sad when such you people have to go thru such serious health issues. I hope you are able to find out what the cause is. Best wishes Kiera
    Anonymous 42789 Replies
    • November 4, 2007
    • 04:50 PM
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