Addison's and Narcotics

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A couple of years ago, I weaned myself off Fentenyl, a pain patch I have been on for many years.  After about ten months off the medication, I had my annual endocrinology check up.  My new endocrinologist (one with an actual brain!) decided to retest my ACTH levels.  Surprising to me, my Addison's had improved!  I still have it and yes, it is still a pain, but my numbers were fairly improved (I was at less than 1 and now I am 11).  I asked my Dr. "why?" and he replied, "Narcotic use can make Addison's worse."  I think he also may have said, "be a cause of Addison's" but I'm not sure about that.  He even gave me a copy of the research study that showed narcotics cause adrenal problems.  I think this fact is a very important one both for Addison's patients AND for regular pain patients.  I continue to try to reduce the last pain medication I am on, and I hope to get a retest in the coming months.

 

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  • Posted

    Addison's does not happen from taking narcotics. Addison's disease is an autoimmune disease and it is chronic. People suffering from it have to take medication (preferably hc) for the rest of their lives. Narcotics can create adrenal problems, I am sure of that. Addison's disease is more than adrenal problems... interpreting ACTH tests like other tests to do with endocrine problems are very subjective. Did you have what is called the ACTH short Stim test? What exactly where the results?.

    Blood tests for  cortisol in the morning are not accurate. If you had it in the morning and you were 11 instead of 1, what was the range, just to get an idea?.  The only accurate/recommended  tests for cortisol are the saliva tests, 4 times a day... I know this for sure. But mainstream doctors do not want those tests. Only some holistic and integrative  doctors interpret them well and explain things well.

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  • Posted

    With adrenal Addison's , the ACTH levels

    Are generally high, it is the cortisol levels that

    Can show you if your Addison's is getting better

    Below a 1 for ACTH would mean

    Secondary Adrenal Insufficiency

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    • Posted

      Addison's disease does not get better or worse. It is an autoimmune disease, chronic. I do not think it needs tests once it has been diagnosed... I do not know what 1 for ACTH means...

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    • Posted

      Please read my latest posting.  I don't think you have enough information to make the comment you made.  I hope you are doing well, though!  Sucks, doesn't it?

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    • Posted

      (quick note from med-line)  ACTH stimulation test measures how well the adrenal glands respond to adrenocorticotropic hormone (ACTH). ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release a hormone called cortisol.

      The test is done the following way:Your blood is drawn.You then receive a shot (injection) of ACTH, usually into the muscle in your shoulder. The ACTH may be a man-made (synthetic) form.After either 30 minutes or 60 minutes, or both, depending on how much ACTH you receive, your blood is drawn again.The lab checks the cortisol level in all the blood samples.

      You may also have other blood tests, including ACTH, as part of the first blood test. Along with the blood tests, you may also have a urine cortisol test or urine 17-ketosteroids test, which involves collecting the urine over a 24-hour period.  

      ***different labs use different numeric values.  While I am not sure this is true for ACTH and cortisol levels, (need to research that myself) I am familiar with lab discrepancies from my long time battle with cancer.  One lab in one state has one set of values, while another lab in another state (or whatever) has often had another set.  That was 18 years ago, so things may have changed.  Something to research for yourself if it interests you.  

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    • Posted

      Nothing is 'black and white' as you have read  in Medline.  People like myself has had various ACTH tests. 30 min one, 60 min one...There are lots of grey areas. The ACTH test how accurate is it when you are taking steroids? Depends on how much are you taking? What is the recommendation from the doctor: do you stop the steroids 24 hours before the test? I have done that and I felt very sick so many hours without medication, just to mention one of the many gray areas... also the ACTH tests whilst having hormone replacement for the thyroid, can you tell me if you know how long before the tests I should not have it? There is also the interpretation of the tests.... I have been diagnosed by a professor in the main hospital in a big capital city in, Australia as not having Addison's and that I could cut down my hydrocortisone medication 2,5 mg every week. I almost died.  Do you think I know if after 3 years  some endocrinologist or 'professor' has clarified for me if I have adrenal insufficiency or I have Addison's disease???? The medication protocol is different whether you have one or the other...

      Of course, I do not know the right way to solve the gray areas and how to twist doctor's arm so they do not mislead me any longer. One of the 8 endocrinologist I have seen since June 2015 told me that goiter (I have one) does not mean to be hypothyroid and that he 'wanted' me to stop hypothyroid replacement therapy immediately. Yo may have read things in Medline...

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  • Posted

    Forums are fine for emotional support.  They are NOT to be taken as "the gospel."  Therefore, stating that something "is" or "isn't" is not our place.  The old saying "the most important thing I learned in college is how much I DON'T know" certainly applies to discussing Adrenal Insufficiency or Addison's Disease.  In reading through many comments (different discussions) I am perturbed to read that members seem to be stating FACTS without doing the research themselves.  As far as my posting regarding addison's/adrenal insuff. and opiate use?  Simply try searching for "Addison's Disease and Opiates," or "Adrenal Insufficiency and Opiates."  There are multiple sites (RELIABLE ONES) that give good information regarding this subject..........NOT OPINION, but medical factsl.  Come to this site for support and warm fuzzies, but please..........DO YOUR OWN RESEARCH!!!  Even if you have a "good" endocrinologist, remember that all endocrinolgists are NOT created equal.  Always check things out for yourself, using multiple search terms to get to the right place.  Read more than one reliable article (not Wikipedia or other forums, please) and think about what questions you would like to talk to your own endo. about.  OK?  No offense meant, here, but reading how uninformed the responses I received  are helped remind me that not every patient has either the experience or the skill to do good research. With that being "said," I excuse myself from this discussion with the hope that each of you will take your own health into your own hands and brain! 

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    • Posted

      No one on this forum has said anything about

      Knowing about narcotics and AI

      We are merely stating what we know about AI

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    • Posted

      I agree with you entirely. And I try to share with people who seem new in their fight for healthy glands health my personal experiences with endocrinologists whether they were good or bad;  with people who are 'newer' than me and surely younger than me. It is not all about RESEARCH. When a person wants to keep out of  hospital,  and is working hard to get the medication/healthy life style right so he or she  does not get a fourth pneumonia (after having had 3 in less than 4 years), then that person knows more than just doing research.

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    • Posted

      I have said nothing because I have not taken narcotics and I do not have any personal experience/knowledge about their effects on AI.
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    • Posted

      Hi CC!  I have an unusual case of Addison's which totally confuses most endos.  They found my adrenal glands were much, much smaller than usual.  I have read that the adrenal glands affect our immune system, so is my getting a rare type of bone marrow cancer a result of that? In my personal opinion, knowing myself as I'm sure you do as well, the small adrenals came first.  What little I had left tanked from the high steroids which were part of the first round of chemotherapy (before transplant).  So....and I'm really not sure about this myself....when I read the descriptions of primary and secondary Addison's, it seems like I qualify for both???  Lucky me?

      The first endo I saw was horrible.  He just kept telling me that my adrenal function would return if I would just be strong enough to feel crappy as the therapeutic dose was decreased.  I was totally miserable for two years, in and out of the hospital. I felt like a failure because he told me I wasn't trying hard enough. I finally was able to see the head of endo at the University of Washington.  He put me on DHEA, 20 mg hydrocortisone (15 a.m. and 5 in the afternoon) and fludrocortisone. He also made a disgusted face when I told him what the other endo had told me. 

      Since Addison's is a 1/100,000 disease.  (Yeah, and my cancer was ALSO a 1/100,000 disease WTF?), I sometimes wonder if the worst part of this disease (dis----ease for sure) is dealing with doctors who don't see it enough to really know what they are talking about.  I really struggle with accepting my limitations because I can't seem to get the first endo's comments out of my head.  "No, your fatigue is caused by lack of exercise.  No, your (insert symptom here) is caused by (something I did or didn't do), you can't blame everything on Addisons, was his favorite saying.  I finally found a UK site that really was educational, and the pieces finally fit.  

      I

      Personal experience counts a lot for how each of us deals with the hand we've been given.  But if we don't understand our disease medically, how can we protect ourselves from it getting worse?  And the symptoms CAN get worse if we don't take care of ourselves, both physically and emotionally.  I start with research FIRST because I NEVER want to be so manipulated and put down as I felt I was by the first endo I saw who told me I wasn't trying hard enough.  I want to go well-armed with knowledge into a dr's appointment.  I am sure most of us end up seeing our GP more than our endos and they know very, very little.  I've found that my docs rely on my knowledge to help me during a health crisis!  

      So well-armed with knowledge (research) is the way to go.  Also, I have printed out a number of copies describing Addison's and I make sure I give a copy to each of my health professionals and even my friends and family members.

      Nice "talking" to you, cool catalan!

       

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