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    Old 02-14-2007, 06:58 PM   #1
    Joan123
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    Question ACTH test results and treatment ?

    My 13 year old son was recently diagnosed with secondary adrenal insufficiency due to steroid use for Crohn's disease. His test results are as follows:

    8:00 am Cortisol = 1.1 (4 - ? is average)
    ACTH Stim:
    Baseline was undetectable (too low for test to detect) then rose to 7.5 during test. Doctor said normal would be a baseline of 4 or above and it should raise to 18 or above.

    My question is, were his test results real low? How severe is this?

    After some trial and error with meds, he is on 5mg Cortef and 5 mg Prednisone in the morning and 10mg Cortef in the evening. Does this sound reasonable? We just upped his meds because of continuing and worsening of symptoms.

    Last edited by Joan123; 02-14-2007 at 07:00 PM. Reason: want to add something

     
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    Old 02-15-2007, 10:03 AM   #2
    Hormoneman
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    Re: ACTH test results and treatment ?

    Your son is the first secondary AI I've heard of with a stim that base cortisol could not be detected. Was this test done after he was weaned of the steroid? Even 4 would be very low. For his age (I rarely deal with children) I'd guess, 20 would be the minimum. All hormone ranges are very flawed, but cortisol and thyroid tests ranges are among the most flawed. So yes, his test results were very low in my opinion.

    How long was steroid used? If just a few months there is at least an even change he could be slowly weaned over like 3 months and his acth and cortisol may come up to where he wouldn't need steroid therapy.

    If his doc says that his Crohn's does not fit with how Crohns usually goes (caused by antibodies), then he might actually have a hormone problem, like thyroid causing symptoms mimicing. Low thyroid can also cause IBS.

    Get these thyroid tests for him
    TSH
    Free T3
    Free T4
    thyroid antibodies

    If his doc is an endo, keep in mind they have atrocious track record dealing with anything besides diabetes. I usually recommend osteopaths (as a group good with hormones, good at finding causes) since I've seen so many have good luck with them.

    Last edited by Hormoneman; 02-15-2007 at 10:03 AM.

     
    Old 02-15-2007, 01:17 PM   #3
    Joan123
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    Re: ACTH test results and treatment ?

    Thanks for the reply Hormoneman. I will tell you what I know and answer some of your questions and then I have more questions...

    My son definitely has Crohn's as confirmed by biopsies, all kinds of scopes, etc... He has had a thyroid test but I don't know which one(s) and we were never told the results were not normal. We saw a pediatric endo. a couple of weeks ago where we got the diagnosis. Prior to that, my son had been experiencing chronic and severe nausea, occassional vomiting, constant headaches, episodes of hypoglycemia and severe fatigue (sleeping up to 15 hours a day and still being tired). He has a homebound tutor as he can not make it to school. Our doctors could not figure it out and his pediatric GI ruled out crohn's involvement in these symptoms. After numerous tests, including MRI, our pediatrician did a cortisol and thyroid test. The Cortisol was as reported 1.1 at 8:00am. It should be noted that at that time our son was taking 3 mg. of Entocort, a steroid. He was in the process of a long steroid wean. Our pediatrician did not make an issue out of the cortisol at first and said it was just borderline low, that he had seen worse. Finally, after the symptoms were worsening, and he didn't know where else to go, he got us an endo. appt.

    As far as past steroid use, here it goes...
    Dx. with Crohn's Oct. '05 put on 40 mg prednisone and eventually weaned off by the end of January '06. In the meantime, he had received some IV steroid when he was hospitalized for kidney stones at the end of Oct. '05 and for pancreatitis in Nov. '05 (reaction to a med). Then he was put back on Pred. in July '06 at 30 mg. and by the end of August was upped to 60 mg. then it was found out that his main problem was C Diff Colitis and his Crohn's at the time was just mildly flaring. After being in the hospital with IV steroids again at the start of Sept. he was put on 9 mg of Entocort and a fast wean (4 weeks) of his prednisone. The doctors felt that the Entocort which is more topical in nature and only about 12% is systemic would help him wean off pred. and target his crohn's inflammation. Then about 3 weeks after the Prednisone, he was still on Entocort and had a few days of IV steroids when he had his gall bladder removed (not working, had been damged by a med).
    It is now end of October. We attempt to take him down to 6 mg of Entocort second week of Nov. but symptoms get worse. His GI ups the Entocort to 9mg again. Finally, starting in early Jan. '7 we went a week on 6 mg. of Entocort, then a week of 3 mg. then none. All this time my son was getting sicker but the doc's didn't believe that enough of the Entocort would be in his system to cause problems. Since his last large dose of steroids last summer, he has the moonface, large belly and buffalo hump. He has gone up 1/2 shoe size in the last year and a half and has not grown in height for about 3 years.

    Family history of thyroid problems (both sides of the family), diabetes (dad, grandfather, greatgrandmother), and pcos(aunt). I have bilateral adrenal tumors that are okay so far (nonfunctioning).

    The next step, our endo. is doing growth hormone tests. Sometimes I have wondered if this is a problem really from the steroid use or if this would have been a problem anyway. What do you think?

    I know what I wrote was really long, sorry...but I appreciate your response and am wondering what is an osteopath? Any other suggestions? I don't think my son is getting any better, he is having a worse day today.

     
    Old 02-15-2007, 03:27 PM   #4
    sue1234
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    Re: ACTH test results and treatment ?

    I'm no expert as to people using cortisone, but when you said he had kidney stones and a bout of pancreatitis, plus ongoing headaches, I would definitely ask to have his calcium and PTH checked to see if they are elevated. Those are symptoms of that, but, then again, they could have their connection elsewhere.

     
    Old 02-15-2007, 04:06 PM   #5
    Hormoneman
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    Re: ACTH test results and treatment ?

    Your son has really been through it and I've never dealt with a situation like his before.

    Entocort supposedly won't suppress the HPA axis, but I'm skeptacle that it doesn't have at least some effect. If Entocort really has not effect on HPA axis, it may be that the high doses of the pred were prescribed for long enough time that his HPA may be permanently suppressed, but you'll have to discuss with the doc about if anything can be tried to raise his HPA axis back up.

    So he is not on any steroid now? In my opinion, your son should be tried on 30 Hydrocortisone for his AI (ask for serum acth to be done first) and if after two weeks he doesn't seem to do well on it, try him on 6 mg Medrol. Keep in mind, I'm not a doc, just sharing my knowledge and experiance.

    I dealt with a woman about a year ago who had a terrible, nasty itchy rash (started about 6 months before prednisone was introduced) that the doc was treating with 60 mg of prednisone for about 6 months. She showed me acth stim test and other cortisol tests (from before she started the pred) that showed that she was secondary AI. I explained to her what the 60 mg pred would eventually do to her and I suggested she gradually lower it to 7 1/2 mg to treat her AI while seeing if the lower dose would keep her rash at bay. Low and behold the 7 1/2 mg (later switched to Medrol) seemed to help her rash much better than the 60 mg did. On 60, she would still get an aweful flareup every 6 weeks, but the last time I dealt with her last fall, she had gone 6 months without anything more than a minor almost not worth mentioning rash flare up every two months.

    I don't know if keeping your son on a max replacement dose of 7 1/2 will still help his crohn's or not, but I think is worth talking to your doc about. Actually, I never recommend prednisone since it is hard on the liver. The liver converts the prednisone to prednisolone, a process that is tough on the liver. Medrol (methylprednisolone) is much easier on the liver. 6 mg is the max recommended dose for Medrol.

    Make sure he's tested for thyroid antibodies. Where there is one autoimmune disease (Crohn's), there can be another autoimmune disease or even more than 2. This is called polyglandular autoimmune sydrome.

    With him being on high doses of the steroid for so long, plus the pancreatitis, have him tested for diabetes too. Make sure fasting insulin and fasting glucose are done at the same time. Many docs just do one or the other, but then you only get half the picture.

    There are many things that can cause short stature including low GH which is responsible in about 10% of cases. Low thyroid, kidney disease and low insulin are a few. Growth hormone is not the only 'growth hormone' by the way.

    I recommend he get igf-1 test which is kind of a screen test for low growth hormone. Igf stands of insulin growth factor. Insulin combines with GH to make Igf. GH by itself can't do anything until it combines with insulin.

    If he has salt craving, can't handle heat, sweats more than other people, ask for aldosterone and renin tests. Low renin is what happens in secondary AI, primaries get high renin. I'm assuming your son has already had sodium and potassium tested in CBC, I'd like to see them.

    I recommend he get sex hormone testing as well. If he has a problem in that area, it needs to be addressed now. Ask for these tests.

    LH
    FSH
    total and free testosterone
    estradiol (E2)
    SHBG

    Ask for DHEA-S. Is likely to be low which is what happens in secondaries. DHEA is the precursor hormone to sex hormones.

    Might as well test prolactin too, but will probably be ok. Ok meaning not high, prolactin that is low doesn't mean much for men.

    Vasopressin (a pituitary hormone) has a connection to kidney stones. Vasopressin can go up during stress. At night in healthy people, vasopressin goes up and shuts down the kidneys. If vasopressin is to high all the time, the kidneys can eliminate well and kidney stones form. There are drugs to block vasopressin from reaching the receptors.

    An osteopath or DO is a doc who has had regular schooling like other docs, but then goes on to an Osteopathic school to learn how to treat the whole body. They are schooled intently on the endocrin system (among a lot of other things) and how to treat it. DO's put symptoms above ranges, knowing the ranges for most tests, hormones and others, are flawed.

    You're welcome and don't worry about how long your posting is. I hope was of help. When you get the tests, I'll be happy to look at them.

    Last edited by Hormoneman; 02-15-2007 at 04:19 PM.

     
    Old 02-15-2007, 04:22 PM   #6
    Joan123
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    Re: ACTH test results and treatment ?

    Thank you for all your insight. I will see if I have any of his past blood results. He will get a new CBC on Tues. when he gets his remicade infusion. He is on a replacement dose right now of 5 mg Pred/5mg Cortef in the am and 10 mg Cortef in the evening. He certainly has been a complex case for his doctors. I was wondering too if the adrenal insufficiency would be more permanent since the last he was on Pred. was in Sept. He is on a lot of other meds right now too for his Crohn's. He is currently on Asacol, Bentyl, Prevacid, Pancrecarb MS-8, Zofran as needed, Cortef, Pred., Amitriptyline (sp?) and Remicade...I think that is all!

    I know when he has been hospitalized and on IV steroids, his glucose has been elevated but last time it was tested when fasting it was in the normal range. I do worry about diabetes with him. I will see what I can find on past blood work. One more thing, does tingling in the hands relate to anything with AI?

     
    Old 02-15-2007, 04:51 PM   #7
    Hormoneman
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    Re: ACTH test results and treatment ?

    Everyone is different. Some can take steroid for a year or more and wean off and be ok and some can have premanently suppressed HPA axis in as little as 3 months.

    Amitriptyline is bad for the thyroid, especially if one has hypothyroid.

    Glucose ranges are very flawed. Upper number is usually 99. 100 to 124 is considered prediabetes. I look for fasting glucose of 50 in adults.

    Yes, tingling in the hands is a symptoms of AI which can cause less blood flow to hands and feet. Low cortisol can lower body temp and make you feel colder.

    Last edited by Hormoneman; 02-15-2007 at 04:52 PM.

     
    Old 02-15-2007, 05:51 PM   #8
    Joan123
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    Re: ACTH test results and treatment ?

    His glucose has never been even close to 50, usually around 90-110. My son does have a low body temp, usually 96.7-97.8 and is cold a lot. He also gets dizzy when moving suddenly which I assume is probably lower blood pressure when sitting or laying.

    The thing I don't get is his GI doc. who regularly prescribes steroids for the imflammatory bowel diseases wouldn't think to look at cortisol levels, especially when he had all the symptoms and she couldn't tie the symptoms to crohn's in remission. I would think that would be something they would look for.

    I found some of my son's labs from 11-29-06. At that time he was having severe nausea with headaches and hypoglycemia not quite so bad. Some that may have some meaning to AI--Glucose 84, BUN 12, Creatinine 0.7 (low), B/C ratio 17.1, GFR 166.8, Sodium 139, Potassium 4.2, Chloride 106, CO2 24 (in the past that has always been low but okay this time), Anion Gap 13.2,Calcium 9.6 and Osamolality 287. Hemoglobin 13.2 (low), Hematocrit 38.7 (low) MCV 76.6 (low), WBC 13.1 (high),Granulocytes 7.4. (high) Lymphocytes 3.8 (high). I don't know if these would point to anything, but ? One more test, in Oct. before Gall Bladder surgery a Urinalysis showed Glucose (negative), Bilirubin 1+, Ketone trace, Protein trace, Micro Mucous small, Spec. Grav. 1.025, pH 6.0, Urobilinogen 0.2 E.U./dL.

     
    Old 02-15-2007, 07:03 PM   #9
    Hormoneman
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    Re: ACTH test results and treatment ?

    He may have hypothyroidism also contributing to his low temp. Where there is AI, usually hypothyroid is present.

    I have yet to hear of a GI doc who knew anything about hypoadrenal or hypothyroid.

    Always include ranges for any test. What are the ranges for his sodium and potassium? Those numbers look suspicious to me. 95% of those with hypoaldosteronism are in range on sodium and potassium. I've seen enough of these tests in combo with aldosterone test, I am pretty good at predicting who will have low aldosterone by just sodium an potassium, but I also look at symptoms with these tests.

    Does he crave salty foods? His dizziness may be related to salt depletion. Ask him if when he stands if sometimes his eyesight goes dark and his ears give a wierd noise. Try him on salt water (real sea salt which is brownish) when he wakes, maybe in the afternoon and when he gets dizzy. I bet that will help. If he gets a headache or migraine give him salt water. Low aldosterone can do this, but very low aldosterone, you may not get headaches.

    Does he have LDL or HDL cholesterol you can show?

     
    Old 02-15-2007, 07:19 PM   #10
    Joan123
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    Re: ACTH test results and treatment ?

    Potassium range 3.5-5.1 his is 4.2
    Sodium range 136-145 his is 139

    He says he doesn't get faint or lose vision or hear things when he gets up suddenly. His hands get tingly. He also has blurred vision a lot but we have blamed that on his meds. Its funny you ask about the salt because just earlier this evening he made a comment about liking that I bought some salty chips. Just now I asked him if he ever craves salt and he said sometimes he really wants salt and he feels a little better after he eats salty food. Interesting, I had never thought to ask him about the salt.

     
    Old 02-18-2007, 02:27 PM   #11
    Hormoneman
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    Re: ACTH test results and treatment ?

    His sodium seems low enough to me that could have low aldosterone. I've seen many sodiums with aldosterone and am very familiar with their correlation to one another. Most with low aldosterone will have in range sodium. I weight those tests with symptoms. No symptoms, then I think is not a good idea to treat with florinef, but salt wouldn't hurt if that is tried.

    I recommend you get his aldosterone and renin tested. I bet his renin will be low which is what happens in secondary AI. I've only seen one secondary with high renin which is what primaries get.

    Keep in mind that if your son is hypothyroid, that can mask partially or totally, the symptoms of low aldosterone. In other words, if he gets thyroid treatment (I only recommend Armour), then his low aldosterone symptoms may get worse.

     
    Old 02-18-2007, 06:54 PM   #12
    Joan123
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    Re: ACTH test results and treatment ?

    What are the functions of aldosterone and renin? Also, it seems that he has had thyroid testing done and we have not heard that any thyroid test was abnormal, maybe the right tests were not done. One more question, my son has a cushingoid look that started when he was on steroids, does that go away and is that normal with AI?

     
    Old 02-19-2007, 11:30 AM   #13
    Hormoneman
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    Re: ACTH test results and treatment ?

    Search
    Renin angiotensin aldosterone system

    Simplified very greatly, renin, an enzyme, converts angiotensinogen (found in lungs) to angiotensin I via the liver. Angiotensin converting enzyme (ACE) converts Angiotensin I to Angiotensin II which with the help of corticosterone converts to aldosterone which regulates sodium and cloride reabsorption, potassium excretion, all which in turn regulates water retention. This system works with the pituitary hormone, vasopressin.

    As aldosterone goes down, so does sodium and water retention. This can cause low or high blood pressure depending on high messed up the mechanism is. If aldosterone and sodium are down slightly, blood pressure can go down a bit, so the heart pumps faster to get the blood pressure up. The heart may pump to fast and blood pressure can go to high.

    If aldosterone and sodium are very low, blood pressure can go very low and the heart pumps faster, but not fast enough to raise blood pressure to normal.

    A long time ago, I figured this mechanism may be the cause of migraines. The next person that said they had migraines, I recommended they try drinking salt water and get back to me. They reported the salt water elminated their migraine within 3 minutes each time. I then recommended they try drinking salt water in the morning as a preventative and they reported this seemed to help lesson the number of and severity of their migraines.

    As I ran into people who reported they had migraines I continued to recommended salt water and all (about 10 so far) report the salt water helped them. I've been told that salt water works for regular headaches as well. My daughter tends to get headaches and she told me salt water helps her rid the headache right away.

    You need to get a hold of any thyroid tests that were done on your son. Post them here and the Thyroid forum. Get several opinions. Most docs won't say their is a problem unless the numbered are outside the flawed ranges. 95% of those with hypothyroid are in range. Check out the thyroid forum and you'll see that most on there are in range and report they were told their thyroid was fine even though they had classic symptoms of hypothyroid.

    His cushinoid appearance will probably go away with time (within a year or few months) once cortisol is lowered. Cushingoid appearance does not happen with AI. There is something called cyclical cushing's (usually caused by acth secreting pituitary tumor) which can cause cushingoid appearance

    Last edited by Hormoneman; 02-19-2007 at 11:33 AM.

     
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