Non auto immune Addisons

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Has anyone out there got non auto immune Addisons, if so what are the causes. My consultants thinks I have this but hasn’t given me a reason why, just 6 months of steroids 10mg am and 5mg pm. No advice just a see you in 6 months. I am a bit scared to start steroids as I really don’t think with my body as depleted as it is I can ever stop and the side effects scare me. Thanks in advance. 

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29 Replies

  • Posted

    Addison's disease is an autoimmune disease. If a person has adrenal insufficiency which is not autoimmune, that person does not have Addison's disease. Have  you had tests? Saliva tests? blood tests? out mention your consultants. Which kind of consultants are they? Which kind of steroids are you having? All these things are important for me to see the full picture.

    Please tell me.

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    • Posted

      It’s a consultant endocrinologist a doctor.   I have had several sub optimal short synathecen tests. I have all the Addisons symptoms but no auto immune antibodies. 
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    • Posted

      I am glad you see an endocrinologist, sorry I did not know what consultant meant...

      It is so difficult for us 'sufferers' to know exactly about diagnosis... I know that with hypothyroidism antibodies for the autoimmune hypothyroidism antibodies are not reliable. How can we have Addison's based on low short Stim  tests? I have just paid to have next week Addison's antibodies test. I'd be happy to 'see' that they are high. Where I live (Australia) no endocrinologists have tested me in the public health service for Addison's antibodies. I think you are ok with the amount of hydrocortisone amount you have been prescribed. It is necessary (due to side effects)  not to take more than 20 mg/day. Going back to the diagnosis: I have been suffering from lots of things, searching lots of pages in Internet... I have never seen non autoimmune Addison's disease... I am baffled. I am afraid to confuse you more. You probably know there is a condition called ADRENAL INSUFFICIENCY  which is not autoimmune; but its name is not  non autoimmune Addison's disease; its name is then adrenal insufficiency;  the medication protocol is different and risks and recovery in this one is possible. Sorry I cannot be more helpful but I am confused with 'non autoimmune Addison's disease comment'.

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  • Posted

    Addisons is fairly complicated

    It is my belief Addison's might be caused by a tumor

    Because something is causing the

    Adrenal insufficiency

    I have read in certain circumstances

    Primary adrenal insufficiency which is Addisons

    Could be caused by certain cancers but I

    Would imagine this would be quite rare

    You could ask for a full blood count

    To check your red and white blood cells and platelets

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  • Posted

    Also I just read what you wrote

    It is possible you could have

    Secondary Adrenal Insufficiency as well

    You would have to

    Get your basal ACTH levels checked

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  • Posted

    Louise, if your adrenals were working properly, they would produce about 20mg a day of cortisol which is a steroid anti-inflamatory and you wouldn't give it a first thought let alone a second. Hydrocortisone is a copy of cortisol but made in a lab instead of your adrenals. When it is a replacement like this, there are no side-effects (apart from feeling human again!). 

    When people worry about taking steroids, it is because they are in addition to the natural production (instead of it, as in your case).

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    • Posted

      Hi Rodney

      Thank you that’s the first helpful answer I have had. I just worry they don’t know the cause. 

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  • Posted

    Louise ,

    I was trying to give you some possibilities

    For your non immune Addisons

    You can look it up yourself

    Causes for primary Addisons

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    • Posted

      Thanks the point for me is they have tested all of that and it’s all sub optimal but not severe for a conclusive diagnosis. I just want to hear if other people had the same experience. 
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    • Posted

      Well, that is the point

      I don't know your results

      If your ACTH test was low or normal

      It is called

      Secondary or tertiary adrenal insufficiency

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    • Posted

      Non immune Addison's does not exist. There is adrenal insufficiency (not autoimmune) or autoimmune (Addison's disease). Addison's disease 'non immune' does not exist.  

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    • Posted

      It is very difficult to diagnose  or perhaps for some reason doctors do not want to diagnose Addison's disease. I have been trying since June 2015 through 8 different endocrinologists to get a definite answer. Is my low cortisol due to Addison's disease (autoimmune) or is it just adrenal insufficiency? If that is the case I do not need to take hc. But if it is Addison's disease I have to take 20 mg/day (or can I take less)  hc for the rest of my life with all the side effects and contraindications.

      DOUBLE DOSAGE 3 DAYS - WEAN OFF AFTER 2 DAYS IN CASE OF INFECTION, FEVER, VIRUS, VOMITING, ACCIDENT, SURGERY, DENTISTRY WORK CATCHING A COLD (in case is a virus). Information provided by several sources in Internet. No doctor ever told me to do that either. 

      And this is what there is I am afraid.

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    • Posted

      The low ACTH can be due to a 'reduced signal from the pituitary gland to the thyroid gland'. Through research I found out that is caused by a tumor in the pituitary gland. I have had an MRI and I have a pituitary tumor. In spite of that I still do not have any conclusive diagnosis whether my low cortisol was because I have taken hc for too long (not allowing the adrenal glands to produce its own cortisol) or my low cortisol is due to the small pituitary tumor (secondary Addison's disease). This one is not autoimmune, only the primary Addison's disease is autoimmune, I forgot to explain before in my previous reply, sorry. Now I have to wait until May to have another MRI to see if my tumor is growing... I find this stupid because I have had low cortisol AT LEAST from 2015 when I was not taking hc which is the excuse they give: 'you have low cortisol because you have been taking hc for too long preventing the adrenals to produce its own. How big does a chosen doctor wants the tumor to be before being conclusive in his diagnosis? In the meantime one is taking hc, not feeling confident that this is the right thing to do. But one cannot live feeling sick all the time between visits to doctors who are elucidating  between this and that and the other but no 'clear cut'. And it just goes on.

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    • Posted

      I totally understand

      I think it is because the physicians are

      Sometimes uneducated about these conditions

      Currently I dont take steroids

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    • Posted

      Also with adrenal insufficiency

      You should carry a medic alert bracelet

      Because you may need it in different circumstances

      Adrenal Insufficiency is serious

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    • Posted

      Just because I dont take steroids

      Doesnt mean you shouldnt

      But if you do ,

      I would think a low dose would be enough

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    • Posted

      I wish I could do the same, not take steroids but if I have Addison's, I may end up in hospital again with what it seems it was an Addison's crisis in 2015. You still need to have your cortisol levels tested. I'd like not to be on steroids and have a saliva test to check my levels of cortisol in case I still have some degree of adrenal insufficiency.

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    • Posted

      Yes, I do carry the bracelet... something else I had to find in my research... none of the doctors I met have advised me to do so. Just as well when I was admitted in hospital in 2015, I was lucid enough in spite of my very low BP to tell them I was on hc. Thanks for reminding me and everybody else about the bracelet.
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    • Posted

      I am on 14 mg/day, I am tapering, but how low can I go? The million dollar question. I was on 10 mg/day a few weeks ago and I caught a cold. I increased to 14 mg/day!!! It is Spring here in Australia. 

      Thanks for your recommendation.

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    • Posted

      Hi cat

      Oh, I wouldn't know

      I wouldnt go to low right now

      Til your feeling better

      But if you can , start tapering off slowly

      With your doctor's help

      I would stock up on vitamin C

      and just try to to stay well

      Until surgery

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    • Posted

      My doctor does not seem to be interested in me giving up hc. And that's why I want to know if I have primary or secondary Addison's disease. Or it is only adrenal insufficiency

      (which is bad enough anyway).

      I take what I think it is called Liposomal Vit C for better absorption. ( I do not read the bottle. My partner prepares the supplements). 

      Because I am 80 I'd like the some doctor to hurry up a bit to give me the diagnosis because I am running out of time, that's why.

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    • Posted

      To tell if it is primary or secondary AI

      It is a simple ACTH basal plasama test

      Then, you just look at the results

      And the referance range

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    • Posted

      My results of the ACTH tests are clear: my cortisol is low. But it does not seem to be conclusive.... , the production of cortisol from my own glands is now affected by because i have been on hc for almost 2 years the doctors say. My question is: what about my pituitary tumor? would it be that my cortisol levels are low because of that? Then it would mean that I have  secondary Addison's disease no?

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    • Posted

      Yes your cortisol is low

      and yes your doctors can say

      And might be right, it could be

      Because of the hc but

      ACTH is not cortisol

      It is a hormone from your pituitary

      and it should be measured with your cortisol

      And yes your right , your low cortisol

      Could also be a result of a pituitary tumor

      The only way to find out is an mri or ct scan

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    • Posted

      I have had an MRI last October and it shows I have copy from the report: 'a 3mm hyperenhancing area within the right side of the pituitary glad indicating a small pituitary microadenoma'. Then the endocrinologist said nothing. I was not prepared for that lack of reaction, so I went to see a neurosurgeon who removed a brain tumor in 2007. He wants to see yet another MRI in May and I am waiting to see the results of that MRI...

      Thanks for your interest. As you can see, I have been through a few experiences as well as my partner who also suffers from similar problems to mine.

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