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Can adrenal deficiency be cured?

Posted , 6 users are following.

Krazy_Kitten
Krazy_Kitten

I have very low cortisol, and I'm waiting for further tests. I suspect my deficiency is caused by a medication, but it might be autoimmune. I'm just speculating. What I really want to know, is, is this deficiency always incurable or is there the possibility it can be cured? I really don't want to be on steroids for the rest of my life. If the medication has caused it then would I simply go back to normal upon stopping the medication? Any input would be greatly appreciated. This is causing me a lot of worry.

Toni

0 likes, 28 replies

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  • Krazy_Kitten
    Krazy_Kitten

    Posted

    By the way when I said adrenal deficiency i meant adrenal insufficiency!
  • ann_98130
    ann_98130 Krazy_Kitten

    Posted

    Hi

    I too would be interested if anyone has experience of this.  I was diagnosed as adrenal insufficient in December which docs believe is linked to medication.  I have stopped the medication and wondering if my cortisol levels will improve and if so how long does it take? 

    • Krazy_Kitten
      Krazy_Kitten ann_98130

      Posted

      Hi. I am curious which medication your doctors think may be linked, however I know this is a very personal question. The medication I am wondering about is valproic acid. There is evidence online suggesting that this suppresses adrenals. But I'm still waiting for that all important meeting with the endocrinologist, so I can pick their brain.

    • ann_98130
      ann_98130 Krazy_Kitten

      Posted

      Hi

      It was analgesic pain killers and amitriptyline for back pain/sciatica.  After a few months I started getting low blood pressure and dizzy spells, which resulted in me fainting.  I was initially diagnosised with postural hypertension but the doctor want more tests and sent me to an endocrinologist, I got a ATCH stimulation test which showed I am producing very low levels of cortisol.  I was put on 30mg of hydrocortisone per day.  The nurse said they believe that the strong analgesics have caused damage but I have not had any tests or anything to prove.   I have a appointment next week with the consultant and will hopefully find out more about cause, and hopefully duration as the since taken the hydrocortisone I have been suffering from bouts of anxiety which I have never had before.  

    • Roddy999
      Roddy999 ann_98130

      Posted

      It is not really very likely that the HC is causing the anxiety. HC is the same as cortisol, but swallowed rather than produced naturally. The problem that some people have is with managing the dose rate: when your body produces cortisol naturally [a daily cycle, boosted when you are ill] it is a very gradual process whereas taking a tablet does a sudden boost and then decay. So you might try taking half the dose but half the time between doses.
    • cool_catalan
      cool_catalan Roddy999

      Posted

      Yes, I understand what you say and I do not take the 17.5 mg/day HC I am now on (I am tapering), all at once. I have been takin HC  it 8 am and 2 pm. I'd like to be able to split it more throughout  the day, but I am not sure if it would affect my sleep... I go to bed at 9 pm because if I wake up always about 3 pm, I get up for an hour, drink a chamomile tea and listen to the radio in the dark in the living room. Then, I go to bed and sleep until 6 or 6.30.

      am.

      I am hypothyroid and waking up at 3 am is perhaps due to the thyroid gland problem. 

       

  • cool_catalan
    cool_catalan Krazy_Kitten

    Posted

    I had low cortisol in 1965... I have been seeing doctors now and again since. I started a discussion a few days ago desperate, because it is very difficult to find a doctor who has the patience/knowledge/good intention to  put you right. If you start taking hydrocortisone (I would not take  any other steroid because the World Health Organisation recommends HC for adrenal insufficiency or Addison's disease (the autoimmune adrenal insufficiency).  The last endocrinologist I visited two days ago seems to be willing to help me to come out from my 30 months of taking HC. HC can only be taken for some months to give the adrenal glands time to 'recuperate' and be able to produce enough cortisol. If HC is taking longer, it just puts the adrenals to sleep so to speak and it is very dangerous; instead of making them to produce more cortisol than before they just shut up. How much cortisol you have to be on and for how long is a very dangerous path, and learning by making mistakes:

    taking too much or for too long... is bad. You need a doctor who checks your ACTH, your cortisol levels properly. It your adrenal insufficiency is autoimmune, the complications are more complex. At this point, after I think I had an Addison's crisis and went to Hospital where I was diagnosed with Addison's  disease in June 2015, (Addison's crisis!!!) I still do not know if it was that or I was very sick from having a pneumonia. I have had 3 pneumonia in 4 years... I have not had one since June 2015. I had a vaccine after the second pneumonia, to no avail. I do not want to scare you, but it is difficult. My recommendation is to ensure that the doctor understand the complexity of the adrenal conditions : adrenal insufficiency and Addison's disease. The symptoms, in my case are fairly clear. It is Addison's but having HC for too long apart from getting osteoporosis, putting weight on, and shutting up your adrenals is not ideal. On the other hand, to have HC for six to eight months, and then wean off and have the  cortisol levels checked and see if your adrenals are responding well producing more cortisol that before, is a good way to go. But there are other problems. Having the cortisol checked with a blood test is not ideal because cortisol should be checked during a 24 hour period to see the levels four times a day. NOT ONLY  the cortisol at 8 am in the morning.... when it is ALWAYS high at that time of the day. I do not live in USA but I know you have all those issues with medical insurances... ideally, if you can afford it, the best is to visit  a Holistic doctor,  functional doctor, integrative medicine doctors...(cortisol saliva test 4 times during a period of 24 hours). It could be that you are also hypothyroid?. Are you young? Problems with the adrenal glands can give physical symptoms as well as mental symptoms. My partner suffers from the second, and I suffer more from the physical symptoms. My TV broke yesterday and I will not have the new TV connected until tomorrow morning, so I had plenty of time to explain some of the things I have been through since 1965. I am not young but I take supplements (the right ones I hope), eat the right food, eat organic food, no not use chemicals in my house and try to avoid chemicals as much as I can outside my home. I hope I have helped you Krazy Kitten. It is confusing. I tried to make it as 'digestible' as pos...

  • Roddy999
    Roddy999 Krazy_Kitten

    Posted

    Not to take away anything from what Monsie has said (which is about "primary Addison's disease" - which is rare, btw), it is also possible to have "secondary Addison's" (which is even rarer!). This (secondary A) happens when your adrenals are perfectly ok but the problem is that they are not getting sufficient (or even any) instructions [ACT Hormone] from the pituitary to produce cortisol. So measuring your ACTH is a good pointer, which may be followed by a Synacthen [synthetic ACTH) test.

    I have secondary (and a few other hormone deficiencies) because of a non-functioning pituitary tumour [benign, as they almost always are]. Since I FINALLY got a diagnosis and went on hydrocortisone (= synthetic cortisol) four years ago, I feel like the proverbial million dollars. I have had no adverse affects whatever.

    The Addisons Society and the Pituitary Foundation have lots of useful advice and support if it turns out that you need either.

    Best wishes.

     

    • Krazy_Kitten
      Krazy_Kitten Roddy999

      Posted

      My reply further down was also directed for you. I forgot to say. I also have underactive thyroid which was diagnosed years ago. At this point I do not know if I have an autoimmune disorder or not.
    • cool_catalan
      cool_catalan Roddy999

      Posted

      Hi

      I know about the primary and secondary adrenal insufficiency and the autoimmune thing attached to Addison's disease. In my experience, because it is all in the hands of the 'interpretation' of the doctor at the time, I am a bit cynical about their comments/diagnosis. My latest experience in that field is about the 'reading' of my last MRI. I have a pituitary micro adenoma. I forgot the size now. This is another GREY AREA subject to doctors interpretation... how big a pituitary micro adenoma  has to be to cause secondary Addison's disease? Or does it have to be a macro adenoma? Have you been taking hydrocortisone for four years?. I hope not. I do not want to mislead you but one thing doctors in Australia where I live seem to agree on is on the length of time a patient should take HC. HC shuts down the message the pituitary gland should send to the adrenals to produce cortisol. I have been on HC for two and a half years and finally found a doctor  who wants to help me to come out of it. Other doctors have told me how bad it is to take it but did not tell me how to do it, they did not want to get involved in 'keeping one eye on me whilst tapering'. The doctor I saw last week has put himself out to give me and my partner the support we need to do that: advice, querying symptoms. Do you have plans for any surgery in the immediate future he asked me, just to mention one of his worries.

      I am always worried I may confuse you all.

      Let me know if you need any clarification.

      Keep well.

       

    • Krazy_Kitten
      Krazy_Kitten

      Posted

      That was supposed to say best of luck
    • cool_catalan
      cool_catalan Krazy_Kitten

      Posted

      Thanks, 

      we all need it when it comes to deal with certain grey areas as we are with our adrenals that not everything is 'conclusive'.

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