Worried incase I have addisons disease

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Hi all, I'm 32yrs old and have 5yr old twins and a 2yr old. Since I had my youngest I've been very unwell. I was diagnosed shortly after his birth with underactive thyroid and take daily levo thyroxine. Still don't feel at all well even with adjusting dose etc. When he was 3 months old I went totally deaf in my left ear. I was diagnosed with sudden sensorial hearing loss (no cause basically) and its never come back. I also suffer with repeated bouts of extreme dizzyness, nausea, vomiting etc. This was roughly monthly but its definitely getting worse and is much more frequent now. I was diagnosed with meniers disease. Also have poly cystic ovaries, very irregular or non existent periods. Was referred to an endocrinologist who did blood tests as he felt my symptoms weren't to do with the underactive thyroid and felt that was well controlled. My 9am cortisol has come back at 193nmol/l and hes said I need a synacthen test. Iive now googled this and am scared I might have Addisons disease. I have nearly all the symptoms. I'm also wondering do you think the very severe vertigo, headache, vomiting episodes could be to do with addisons and not meniers? In addisons do you have bouts like this and then recover on your own? I literally feel so so ill for 24-48 hrs and then feel better... Could that happen with addisons or would you die without help?

Does my cortisol seem bad or could it be OK/something else making that low?

Thank you for any ideas as I'm very scared after doing too much googling. Should of just waited for the test! Thanks

0 likes, 9 replies

9 Replies

  • Posted

    Hi Jennie

    I think I may know why your feeling unwell

    Because I have potential pituitary issues

    I do lots of research

    There is something called

    Sheehan's Syndrome

    It is a condition that happens to the pituitary

    After giving birth

    You really need a pituitary MRI

    And proper endocrinology follow up

    Good luck, I hope this helps

  • Posted

    About the acth test

    Don't be worried, it is a piece of cake

    Instead of having Addison's though

    You may have secondary or central

    Adrenal insufficiency

    This can be diagnosed sometimes

    With regular blood tests and the acth test

    Please tell your endocrinologist to do the acth test

    That may confirm secondary adrenal insufficiency

  • Posted

    As I was writing this I had an article

    That mentions Sheehan Syndrome

    Next to me.

    It says 90% of patients will also have

    Associated central hypothyroidism

    It is different from regular hypothyroidism

    So you will definitely want to talk to your doctor about


    Again , best of luck from Canada

  • Posted

    Also I'm interested to read about predisinole sometimes causing these problems... Because I took a very high dose of this medicine when I went deaf as that can sometimes cure it

  • Posted

    A Synacthen test [synthetic ACT Hormone] is nothing to be worried about,

    In a normal day but especially if you are ill or have an inflammation, your pituitary should put some of ACT hormone (a signal hormone) into your blood for your Adrenal glands to notice and start pumping out cortisol. When there is enough cortisol, ACTH production stops, So if there is no reason for it, there will be very little ACTH in your blood and little cortisol. The synachthen test adds some ACTH and a little later a blood test will show if your adrenals produced the goods. If not, you might have primary Addisons.

    But your normal (baseline) cortisol is not especially low so it is certainly not the first thing your endo would have suspected.

    Your pituitary [think of it as a very clever thermostat)] also sends signals to your thyroid to order up thyroxine, and to your ovaries for FSH and TH, and a lot more besides. But nobody is going to send you for an MRI on the off chance, Expect a lot more weird  and wonderful tests.

    On the positive side, you are now dealing with a specialist with a load of training and expertise, which is 90% of the battle!

    On the

    • Posted

      Thanks well that's good it's not so low so hopefully not addisons and as you say hopefully they will find out what is wrong.

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