Confused and anxious about diagnosis, can I really have a diagnosis of Addisons one minute and then not

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About 25. years ago I was diagnosed with Diabetes, Hashimotos and pernicious anaemia with ANA and the likelihood of developing Addisons. I was sent home with Hydrocortisone tablets to be used in case of an emergency and told to alert the doctors/surgeons should I need an operation, where I should have adrenaline as a precaution. I have had short synacthen tests annually while living in London and Oxfordshire. I have had two 'crisis' type episodes, one in my twenties and the other in my forties, where I became extremely weak, could not wake up much before noon, had no energy and felt totally disconnected, from all around me. These both lasted several weeks before I was back to normal and I have had nothing like them since. I am now living in Buckinghamshire and have had trouble getting my annual short synacthen test and hydrocortisone tablets from the GP. I was eventually sent for the test, which as usual, came back clear but they now say that I no longer have Addisons and don't need a prescription for hydrocortisone. I am not sure how to take this as it doesn't seem right?

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  • Posted

    Or then again, maybe you don't have Addisons. Having risk factors for a disease doesn't mean that you will ever get it, still less that you have it already.

    • If you already have Addisons, your Cortisol would be low and you would be on regular Hydrocortisone. Or dead. But your annual check-ups would have found it, they didn't, so you don't.
    • With the risk factors, your Doc would be concerned that the condition might creep up on you gradually, that you wouldn't really notice it that much but your nearest and dearest would notice that you seemed to be getting very old before your time lately. More worrying, if you had an accident or an operation, your adrenal glands would be called upon to pump Cortisol {a natural anti-inflamatory} into your blood-stream and at that critical moment, might not perform. So an annual check-up was 'precautionary principle'.
    • Your doc was absolutely right to tell you to forewarn the surgeons of the possibility - but it is no more than that, just a possibility that would need to be checked before doing anything, just in case. That didn't mean that you had Addison's either.
    • The "crisis type" events you have had don't match the description of an Addison's Crisis. I have no idea what you did have but it wasn't an AC.

    Your docs have been doing a blood test every year to check your baseline cortisol and then doing a Synachten test (a synthetic version of the signal hormone from your pituitary that calls on the adrenal glands to boost Cortisol production). From what you say, every year the system has performed as it should: Cortisol has been produced on cue. So the way I read it, your doc has concluded that all the tests show the risk has not materialised, that you don't have Addison's and you never have had Addison's (it doesn't cure itself, it is an autoimmune disease, you don't get over it). This is exactly what "the tests came back normal, as usual' means. Relax, you have enough on your plate with three real conditions without worrying about one that maybe you might get in the future - the future has arrived, you didn't get it and you don't have it.

    There are of course exceptions to the rule (as per Cool_Catalan's experience) but what I have described above is true for almost all of the people, almost all of the time. Your doc is being entirely realistic.

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  • Posted

    The comment about 'your 'Synacthen test is ok' I have had before. In my case, reading and reading the results over again, I cannot see that is 'ok'. ... I have read your comment again after Roddy999 answered you, and I think he's right. An Addison's crisis, it is not that you are tired and cannot get out of bed before noon. Addison's crisis one ha to go to hospital and have cortisol infusion (through the vein), otherwise you die from exhaustion. The blood pressure is so low, that you die from it. It is not that one cannot get up before noon... it means you cannot stand up on your feet, is that clear?

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  • Posted

    I cannot go to Sydney. I cannot fly any longer. The distance from Ballarat where I live and Sydney is 970 km by car. At present I have a virus. Although it is Summer, the temperatures are so low, that I got a virus. So has my husband. He's on the way to developing Addison's. He's a bit younger than me. He's got 'adrenal isufficiency' diagnosed in 2015. I have doubled the amount of HC for the 4th day today. What I mean is that I need a doctor in Melbourne which is 100 kms from my house.

    A referral was sent by my GP to a very good endocrinologist specialized in pituitary problems, at the Alfred Hospital in Melbourne, almost a month ago but he's not contacting me. I must say the referral letter was a bit 'funny' to say the least.

    Thanks for your offer. I asked my naturopath to prepare a herbal mixture today to help me through this horrible time I am having with so much upper chest inflammation.

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    • Posted

      You could try a trick I used in the past to get an appointment. The following is a typical conversation I have had with office staff of specialists:

      "Hello is that Dr Smith's rooms"?

      "Yes, it is"

      "Hi, my name is Barney and I tried to make an appointment with Dr Smith, but as your office has not called back, I assume he is too busy to see me. Could you please refer me to someone as good as him as the matter is urgent".

      "Oh I see...refer you to another specialist..... hmmmm....let's see....he really is frightfully busy.... but we could squeeze you in late next week. How does that sound"?

      They will not want to send you elsewhere as that looks poorly for them.

      The fact that they did not call you back could mean:

      1. They are too busy to call you
      2. They lost your number
      3. They wanted to but forgot to call you
      4. You are not a cut 'n dried case which is their preference.

      Do not assume their non calling means they are too busy. Often they are lazy of absent minded. I recently experienced this with a plastic surgeon who was KEEN to see me and then due to his inter office shenanigans, forgot all about me.

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    • Posted

      Some of my text went missing, so here it is again:

      "Hello is that Dr Smith's rooms"?

      "Yes, it is"

      "Hi, my name is Barney and I tried to make an appointment

      with Dr Smith, but as your office has not called back, I assume

      he is too busy to see me. Could you please refer me to someone

      as good as him as the matter is urgent".

      "Oh I see...refer you to another specialist...let me see.... we truly

      are busy...maybe I can squeeze you in late next week....how does

      that sound"?

      Often they'll do their best to accommodate you as they want the

      repeat business you will offer.

      The fact that they did not call you so far could mean they have

      no interest. It can also mean they are disorganised; lost your

      number or wanted to call you but have other priorities to deal

      with first.

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  • Posted

    Sorry to hear this. You need to either put a complaint into your healthboard or ask for a second opinion as this is unacceptable. I also think a repeated test should be done too as they shouldn't be basing that on just one test given false negatives and false positives. Best of luck.

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  • Posted

    I agree with cocokawaii but will go one step further.

    1. Ask around for an EXCELLENT endocrinologist. These folk often work in hospitals;
    2. Go see the endocrinologist and bring all the paperwork you have from earlier doctor/s;
    3. Make clear to him/her what your symptoms are;
    4. The new endocrinologist will do or should do a comprehensive work up; and
    5. Separately, once you get a formal diagnosis and treatment plan from the new endocrinologist THEN you can lodge a formal complaint about the bozo you first saw. With a formal diagnosis you will be on solid ground in your complaint.
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