16 weeks since diagnosed with hypothyroid and I’m still feeling awful. I’m on 75 mg of North Star levo. I’m due to have my bloods tested again next week but I’ve been having bad stomach problems. I’ve never had any eating issues before starting the levo but now eating is a massive problem. Smells make me urge, I can’t eat a proper meal, I’m full within two mouthfuls and that’s if I can actually keep it down. The only thing I can eat with no issues is salt and vinegar crisps. I’ve been craving anything salty so my doctor ran some cortisol tests for me. My results came back but there’s no appointments available for the doctor to explain them to me, the receptionist just told me that they are perfectly normal. I’m starting to distrust this “normal” they keep saying so I thought I’d post my result here and ask if they are ok. Do these results rule out Addisons?
Thanks 🙂
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mummytosix
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Cortisol is at its highest around 9am. Was this test done at that time. This is important.
If it was done at 9am then it’s within range but it could be higher.
I’ve had low cortisol issues myself.
This is not a guide to Addison’s. What you need to rule Addison’s out is a synacthen test.
Normally they do a synacthen test when your 9am cortisol test is below the range or near to the bottom like a 155 result or lower.
I have Hashimotos and was only on T4 Levothyroxine for many years. I found eventually that adding T3 plus T4 daily vastly improved my cortisol from 68 to 466 (155-607).
There are symptoms associated with adrenal insufficiency and one of them is salt craving. But there are other symptoms such as weight loss, hyperpigmentation or tanned look, nausea, or no appetite and others. These can be true for many other things. Addison’s disease is a rare disease but adrenal insufficiency can occur if you use steroids for long time. Even nasal spray or creams.
I have Addisons Disease or primary adrenal insufficiency. Following a road accident and a wrist surgery I became sick but I got no help for 16 months when I ended at A&E in very bad condition. I had many tests and I was tested from cancer to tuberculosis and everything came out normal. I have been diagnosed with hypothyroid also, but resolved with the Addison’s treatment.
My diagnosis was confirmed by an ACTH test and I was tested later positive for antibodies that are destroying the adrenal glands.
I’m still angry sometimes for the ignorance of my GP who didn’t think about Addison’s despite many tests and appointments. I did learn that is not enough knowledge about it, because it is rare. Even among doctors. I would recommend to try to speak with an endocrinologist specialised in adrenal diseases to exclude the possibility or to diagnose it. I was scared that I have to take steroids for life.
But on the end I got my life back,
I wish you all the best, and don’t let anyone to let you down.
PS. Cortisol is fluctuating, with highest readings in morning and decline in evening. It is released in pulses. That’s why is not enough one single reading to diagnose. High potassium low salt can be a sign of adrenal insufficiency.
They don’t necessarily rule out Addisons but I would say that it was unlikely that you had it, although you are low in cortisol.
I would say that you need to ask your doctor to refer you to an endocrinologist and you need a short synacthen test, also called an ACTH test by some doctors. This will measure your body’s reaction to a synthetic form of ACTH (usually given via a cannula in your hand). They take a baseline blood sample and then give you the synthetic ACTH, they will then let you wait for 30 minutes and will then take another blood sample and compare the two for cortisol and ACTH levels. Some also do another blood sample after 60 minutes too. I would make sure that this test is done before 10.30 am and as close to 8/9am as possible as our cortisol levels peak at around 8am and then start to fall naturally during the day unless your body needs it.
If you had Addisons then the ACTH would do nothing to your body and your cortisol levels wouldn’t rise or would barely rise, if you had secondary Adrenal Insufficiency then your levels would rise but not very far if they rise to over 400-450nmol/L then it would rule out AI altogether.
I hope this helps, I’m not medically trained but I’ve had Addisons Disease for almost 3 years now, you kinda have to be your own advocate and expert when it comes to rare diseases such as Addisons unfortunately 🤷🏻♀️
Good luck hunni and try and get your GP to refer you to an endo that has an interest in Addisons, as most are diabetes specialists and have either never had a patient with AI or know very, very little about it!!
If you need any help at all, please feel free to pm me.
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