Can I Have Normal Sized Adrenal Glands on CT and Still Have Addison's?

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I'm so exhausted - in a way I can't explain. I've lost 27lbs in 6 months. I'm 43 and a size 0 now. I feel like I am dying. I mean, I don't think I'm actually dying,  but I feel like this is what my body would feel like if it were just slowly dying. The most minimal activity is completely exhausting. My life has changed so drastically over the past 3 months. It's so hard not knowing why this is happening. 

Anyway, I had some labs done recently and my ANA was positive. Only 1:80, but positive still. Last night I was just so very tired and I just wanted to try to find some answers. So, I looked at the symptoms of about 20 autoimmune diseases. I was surprised to find that all of my unusual (and seemingly unrelated) symptoms show up in Addison's disease. It's a long shot, because I know it's so rare - but, it would just explain everything. 

I just had a CT scan to try to determine what is happening with my body. From what I have read, it seems that my adrenal glands would have shown up as small on the CT. They were seen as being within normal limits. 

Does this mean that I couldn't have Addison's? 

Thank you in advance! 

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  • Posted

    Hi

    What is 'ANA was positive'? Which kind of test is it?

    I have Addison's still undiagnosed. My latest endocrinologist (I have seen 8 since June 2015), says he's not sure if I have Addison's or it is adrenal insufficiency; it is not as rare as they say it is you know? But doctors  here in Australia do not put themselves out to help you with the diagnosis. I am taking 20 mg/day of hydrocortisone, I tried to wean off but I was feeling too sick when I reached 14 mg/day. I had to go back to the physiological dosage.

    I am not a doctor, just a patient that 2015 I have been researching, trying to understand the cortisol problem. Please check about this: Cortisol is produced, I think by the adrenal cortex, the size of the adrenals does not matter... I never read anything about the size of the adrenals... If you have lost so much weight and you feel that the symptoms are compatible with Addison's disease, then you have to have the ACTH Stim test (there are more tests as well). IF YOU ARE NOT TAKING HYDROCORTISONE, (HC) you are lucky. This is the time to have the ACTH Stim test. Once the person takes HC the results are not so definite/clear. This is the start. to have that test.

    I hope I have helped you a little bit  -:

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    • Posted

      Thank you, cool catalan. That was helpful.  The ANA is and anti-nuclear antibody test. It shows antibodies which attack your own body's cells. So, basically a positive result can indicate autoimmune disease. I think 5-10% of "healthy" people can have a positive result, but with my symptoms it does seem as if something autoimmune is going on. 

      So, since autoimmune Addison's disease (which is 80% of Addison's cases now) causes the body to attack its own adrenal cells, usually by the time you have pretty bad symptoms, your adrenal glands will be damaged to the point of being smaller. I don't know if you can have normal sized adrenal glands with autoimmune Addison's disease. I sure have the symptoms. 

      I am going to push for the tests. It's hard convincing doctors to do things sometimes. I'm an RN and it's hard for me! In fact, this whole situation has made me really frustrated with doctors in general. I think I have a really good one now and I am hoping he will want to rule out Addison's - if only for my peace of mind. 

      Thanks for your input! 

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    • Posted

      Hi

      I have had the teeth extracted 2 hours ago. There is a chance to have an Addison's crisis until 4 am. It is now 6.11 pm here. I had some tests for adrenal antibodies and they were negative... still, in2016 I had an Addison's crises when I had my 3rd pneumonia in 4 years. Doctors did not care if I had more pneumonias but I did of course being on my late 70's... so I started studying. This thing about the antibodies is hit and miss... Addison's  disease is an autoimmune disease. One thing I know for sure: because I have a goitre, I know that my hypothyroidism is autoimmune (Hashimoto's). That one I know. But other antibodies I am not sure of as you say, you have the symptoms, and to have pneumonias when getting the flu or a cold is Addison's for sure. The cortex, the part on top of the adrenals is the one that gets thinner I think, and it is the one that produces the cortisol. Many nurses in Australia give up the job... disillusioned by the way health works. I need to go to rest again for another while... By the way the public health service dentist  was very good 'tuning' into Addison's and all the consequences of having dental treatment suffering from it. Good on her.

       

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    • Posted

      Hope everything went well! Yes, nurses in US are the same - disillusioned with the healthcare system in general and want out. You go into nursing to help people and then you find that it's nearly impossible to really give patients the care they deserve due to the high nurse/patient ratios, lack of support, etc. It's pretty sad. 

      I was wondering - after having an Addison's crisis, how are you still undiagnosed? How do your doctors explain that? 🙁

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    • Posted

      This is very interesting you ask me that. I have the discharge letter from the hospital where they wrote: Addison's disease certified in JUne 2015. In September I visited a finally an endocrinologist (in the meantime I was buying Hydrocortisone in US; Gp did not want to prescribe it... (The hospital had given me hydrocortisone to get by for some days until I got the prescription which never was given to me). It was a good job I bought HC  from US  very soon after leaving hospital. The endocrinologist in September, 94 kms away (we do not drive), said that only looking at me he knew I did not have Addison's disease, nor I had hypothyroidism. When I mention the goiter I have since 2002, he said that goiter did not mean hypothyroidism. When I said I felt fetter taking HC, he said: 'so do drug addicts, they feel better and that is why they take drugs. No tests, He said he had been a doctor for 25 years and he knew a lot. He said: I want you to stop the hypothyroid treatment as from tomorrow and HC soon too.  So, I carried on buying HC from US at an astronomical price because I did not have a prescription for it. All doctors I saw in the hospital except for one, 3 different GPs, and that endocrinologist (from June to September) insisted I had to give up HC because I'd end up with osteoporosis and Cushings.

      My partner from London he is,  who at the same time wanted to be diagnosed for Addison's went to the main hospital in the Gold Coast and was tested for Cushing's disease...He is 30 kilos underweight no matter how much good food I prepare for him. He's pale and thin, looks very unhealthy and as a boy he had TB. 

      A million \thanks for your interest. Yesterday I had the extractions and went well. I have not had  Addison's crisis following the procedure. I is now 15 hours I had the extractions.

      I appreciate very much having been able to explain what is happening to us to somebody who understands the situation.

      monsie

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    • Posted

      I am literally shaking my head while reading your story. That is ridiculous. Your doctor said by looking at you that you didn't have Addison's! How frustrating it must have been - waiting for the appointment, getting there (hoping for answers)... just to be dismissed like that.  

      Thanks for sharing your story with me. I'm so happy that things turned out well for you with your extractions. 

      Take Care. 

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    • Posted

      Thanks, I feel shattered though. Lack of energy. I hope to build up some strength soon. One thing is that the last 4 endocrinologists agreed to give me HC prescriptions in order to wean off. I went from 32.5 mg/day to 14 mg/day from October 2017 to April 2018. I felt so sick... the last endocrinologist, a very serious young man advised me to increase to 20mg/day. And when I had a routine visit in April suffering from a bad head cold,  and now,  with the extractions, he advised me to double the amount of HC for 3 days. (Which is the thing to do when people have Addison's...) But I have not been diagnosed with Addison's. My antibodies are high. My cortisol is low. (ACTHStim test). I also have a pituitary microadenoma which has not been 'commented on' yet.

      Thanks for your support and understanding. My partner is lovely helping me. He's is 'awaiting' help from the health system on his hernia.

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  • Posted

    I forgot to tell you that doctors are so reluctant to help with the diagnosis (although I see in the forums that some people have been diagnosed...) BUT when I visit  the emergency department like yesterday, the Triage nurses respond very well to me when I mention Addison's... it makes a difference to the doctor's attitude.

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