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Adrenal Insufficiency Community
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Avatar universal

Low Cortisol High acth and a useless Endo ...

Hi
I have just joined .... mainly because I need some help and because I read a lot of answers and every one of them was helpful and nice
I have a number of health issues .... Hashimotos being one ..but taking Graves meds because I swing between hyper and hypo because of nodules.
They continually tell me my thyroid numbers are great. I am used to ignoring that .
I have been feeling dreadful for a few years and progressively it has got worse.
I am at a point that some days I can't get up out of bed. So tired/ fatigued I can barely talk to my daughter , and I'll sleep until 3 pm.
The next day I feel like I have a hangover and can't do a thing , I am also having hypos.
Some days I have a little burst , do whatever I can , then suffer for days.
I also have vestibular migraine , which affects my balance and vision daily.
Finally my endo asked me to do a cortisol test.
The day I went I felt awful and the test came back at 100 ( Australia ) and I was told it should be higher than that?
I got a panicked phone call from the registrar ... telling me to come and get a script for Hysone ... to go and have another blood test and if I got sick to go to the hospital?
I had the bloods done and that day I felt better and it was 136. then I started the Hysone.
I was told they would fit me in sooner ...they thought it was Addisons etc
No appointment was made .. I waited nearly a month to see her. She then says she doesn't think I have a cortisol problem or that I'm having hypos ?
Not Addisons ... because I have not lost one bit of weight ... that has been the case for years ... no matter what I do.
She also tells me I could just be a person with low cortisol ??
Is this possible ? I can't find anything about having low cortisol without a good reason.
I hate taking the Hysone ... I can't take Prednisone and this is nearly the same. I can't sleep ... and I'm so angry and sad...
I have had sudden high blood pressure ... hypo attacks every afternoon and I am not Diabetic ( daughter is type1 ) and terrible heart palpitations,
All of which they told me would not be because of cortisol ... but everything I read says it does affect them all!
I have no clue now ... I did a  short Synacthen test today , which she expects will show nothing.
All the while I feel like garbage .... the only thing that has changed is the fatigue is slightly better after taking the Hysone...
I should add I have met breast cancer ... so I worried if it had spread again ... but she looked at me like I was stupid.
I have no confidence in her now ....
I know I don't have all the standard symptoms for Addisons ( weight loss and skin discolouration )... but I've also read not everyone is the same ....
I am so confused and any help or opinion would be wonderful , I'd like my life back , or at least a bit of it :)
1 Responses
Avatar universal
I am in almost the same boat, on the other side of the big pond (I think). In 2012 I had a great fall, 5 broken (displaced) left back area. I am a type-1 diabetic. Before the fall of 2012, even a minor bug or injury would cause my BG to spike. Ever since that fall I no longer spike do to any infection or injury.

Fast forward to Feb 2018, I had a fall that caused an internal bleed in my right adrenal.  A week later I had a syncope fall, I crash landed on my face. I ended up in ER and admitted for a few days. In ER a Dr told me to watch my adrenal/s closely. It has been over FOUR months of HELL and not one doctor would do a proper adrenal test.....

This has been NO FUN. the only med I get is Zofran 8mg, for the nausea, and nothing for the extreme fatigue. My balance is horrible.

I feel bad almost all the time, with no end in sight.
1 Comments
PS, I should clarify, the 5 broken bones were left back side RIBs, & I went into acute kidney failure, and hospitalized for about a week.
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