MD won't treat secondary adrenal insufficiency

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I have type 1 diabetes of 46 years. I have been recently diagnosed with secondary adrenal insufficiency and also have low insulin like growth factor. They refuse to scan of my pituitary and refuse treatment with a steroid for the adrenal insufficiency. What am I to do? By the way my doctor told me to find a new primary care as. this must be way out of his area of concern even with help from a UW Madison Endochronologist!

Where do I go for help or is this the best it gets?

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  • Posted

    The regular medical world does not wish to treat your adrenal insufficiency?  I have gone to a nature path who is also an MD.  Terrific treatment and good result.  It wasn't immediate and took a long time, but feel much better now. 

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  • Posted

    I was investigating my adrenals because of a low 24 hour urinary cortisol level and very suppressed overnight suppression test . These I had done because of an insurance biased differential diagnosis to Major depressive disorder from my earlier ( and accurate) diagnosis of PTSD - we ruled out primary adrenal insufficiency and it kind of seemed like they don't really treat secondary unless there are markers for pituitary ( usually) or ovarian tumors.. I ampretty sure an endicrinologists can tell from your blood work ups whether these are suspected- so despite my having similar concerns I neither had an ultrasound of my ovaries or pituitary scan and my endo says basically the deficiency is not life threatening and endicrinologists don'tknow about treating it - in research there might be things on the way ( hydrocortisone for returning cortisol circadian rhythms and hydrocortisone for preventing PTSD's particular HPA dysfunction  but endocrinologists don't seem to have a handle on the other causes of deficiency and so they rule out the things they treat and then sort of leave those with a less severe prognosis/issues to just get on with it. They may have a better handle on chronic Fatigue syndrome which is also related to adrenals - so there is hope

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  • Posted

    Hello,

    I too have secondary adrenal insufficiency (SAI). My GP is completely separate from my SAI and has nothing to do with my treatments, symptoms or anything. I see an endocrinologist for my SAI. My primary care doc did my 1st referral but I did not like that endo so I had my rheumotologist refer my to another endo and that's where I've stayed.

    Normally, am endocrinologist is who would treat adrenal related problems rather than a primary care doc. Honestly, I wouldn't trust anyone but my endo with my SAI.

    Depending on your testing results, you most likely should be on hydrocortisone.

    Deb

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    • Posted

      Thanks for confirming you feel, because we are in the same boat, that I should probably be on a steroid. Maybe my results will give you a better ability to know if I really should be treated cause my body is screaming, yes!!

      I was to an endo specific clinic @ UW Madison (it should have been a great place to go) & that was my first encounter with (a should have retired years ago) endo about this. That endo dropped it on my PCP & of course he too refused to treat me. My Type 1 diabetes endo prefers I see someone else who actually only specializes in other endocrine & no diabetics, especially Type 2 because there are so many of them & can consume a whole practice.

      I've finally found an endo who only deals with other endocrine/metabolism issues, no diabetes, and have an appointment on July 12. I'll see how good he really is!

      It seems so long to wait, but at least now I have a bit of hope. Diabetes is a challenge especially to keep an A1C around 6, but this SAI is the worst. I wonder if hesitation to treat come from me also being Type 1 for so long?

      Some of my results are:

      Not sure if it was short/low dose, but I would assume.

      Per stimulation cortisol - 1.7. (2.7 - 18.4)

      Per stimulation ACTH - 8. (6 - 58)

      Stimulation 30 min post - 12.3 (>19)

      Stimulation 60 min post - 17.2 (>19)

      Any thoughts on the results would be appreciated & helpful!

      Thanks so much for understand & making sure I'm on the right track.

      The one thing I have learned is that the low end normal of any test is NOT normal. That was nice info to gain.

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  • Posted

    Jen, "secondary addison's" by definition means that your pituitary is not instructing your adrenals [as well as other glands] to do their job as needed. Your GP will see one case in a career: you are it. They may not be sufficiently confident to treat you without risk of being sued if they get it wrong. Hydrocortisone is usually prescribed but you may also need levothyroxine and other HRT, Really your endo should have prescribed these and your GP just repeats the specialist's advice.

    When you get an eye test, ask the optometrist to pay particular attention to the "field test". If you are losing peripheral vision then that strongly suggests a [almost always benign] pituitary tumour which needs to be removed. It is not life threatening but it will make you blind,

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    • Posted

      Jen, a further thought on this. If you have a pituitary tumour [which is not a brain tumour, by the way, even though it is the skull], then it won't kill you. BUT if it is not producing ACTH, TSH etc to stimulate your adrenals, thyroid etc when the need arises, unfortunately that could kill you. Not directly of course but if for example you have a physical trauma (due to a traffic accident, perhaps) then your natural defences won't kick in. The result is an "Addison's Crisis"  which can indeed be fatal if not treated promptly and correctly. (So you certainly need to wear a medic-alert band so that the ER people know immediately what to do).

      When you see your new endo in July, you really need to be sure you get a treatment plan, at least HRT.

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  • Posted

    Are you currently seeing an endocrinologist? If not then that may be your best bet. 

    But I would definitely get rid of that doctor. You want somebody who will be your advocate, no matter if  it’s somet they’re not familiar with. 

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    • Posted

      I'm new here and looking for some help. Last June I was diagnosed with hemochromatosis. All the labs finally came back and showed severe defiency in cortisol & acth along with other crazy lab values. I had a MRI of pituitary & MRI of liver specifically related to iron storage. Both were normal.  My doc immediately contacted an Endo in nearby town. I was put on prednisone 1st bcoz my doc misunderstood what the Endo told him to start me on. That steroid totally messed me up. My bp went thru the roof. I had heart palpations and I could not sleep at all at night. Saw the Endo and she had meant for me to be on hydrocortisone. So I start taking this. I very quickly gained 17 lbs, still couldn't sleep and I felt just as bad or worse than I had to start with. After 3 months I went back to Endo and asked if there wasn't something I could take. She put me on a low dose of medrol. After about a week I started to feel close to being myself and was loosing a few pounds here and there. Not long after starting the medrol my liver enzymes started to climb. Now they are at least quadrupled what they were. My last round of labs showed I have a positive ANA with speckled pattern. I did have an episode shortly after starting the Medrol where I had an Out Of the Blue crisis. I had to go to the ER. Finally made them understand I needed steroid shot and IV. It was the labs they drew while in the ER that showed my liver enzymes dbled. After talking with the Endo she feels this was probably from the victoza she had put me on to help me loose some of that wt I had gained. Stopped that immediately. But liver enzymes still going up. I don't want to take the hydrocortisone again! I was not living. Does anyone have any ideas??? 

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  • Posted

    I am in a huge battle to get treatment for secondary/tertiary adrenal insufficiency and have done a lot of research on the subject.

    I will have more to say on the subject but I'm writing out my case history at the moment.

    I believe the reason it's so hard to get treatment is because for many years they have been treating people with hydrocortisone in far too high a dose and caused many awful side effects and adrenal suppression in a huge number of people.

    Now it seems, unless they absolutely have to, ie Addison's, they just don't want to have anything to do with it.

    I have had an undetectable morning ACTH result with a cortisol level of 43 nmol (1.56 ug/dl), and they still won't even give me a diagnosis of SIA.

    I have lost everything and spend almost all my life in bed, but they are telling me hydrocortisone treatment is too dangerous.

    I think that means they will not put the work into monitoring it properly, or at least trying me with low doses.

    I am being forced into a position where I will have to source meds and treat myself. I have an appointment on Wednesday, which is my last ditch attempt at getting supervised treatment.

    It's so sad to know so many people are going through the same thing. I wish you all luck and will hopefully be back to share more. 😊

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