i posted here before and had some helpful advice - i have now had two blood tests for cortisol which are both 11nmol
( normal range i gather 220-770) i am now waiting for the ACTH test and in the meantime am on a week of 60mg hydro cortisone( 40 mg 20 afternoon) then a continuous dose of 30mg (20 mg and 10 mg)
my query is i don't feel any less tired at all - just hungry all the time from the steroids and have even slept 16 hours one day since starting this
is this normal ? should i feel different - does this mean that maybe it isn't adrenal ?
i was told my the hospital that bit they had never seen a cortisol that low - which was a bit scary ! but i am confused as have no symptoms other than fatigue ?
It is not standard to put someone on replacements with just blood tests - the standard is a stimulation test (as well as support testing such as sodium, potassium, dhea, ACTH etc.)
60mg is also a pretty hefty replacement dose - so if you needed a replacement dose, they kinda, IMHO, put you from too low to too high and may have given you steroid induced Cushing's - hence sleeping and hunger. There are also tons of hidden symptoms like it eating away your bones and muscles but the doctors don't seem to realize the power of steroids. BTW too little and too much cortisol causes fatigue.
You should have other symptoms - craving salt - low sodium (it is a salt wasting disease!!!!!!) wonky potassium reading, a weird tan (if primary), nausea or something. Fatigue is just not enough - it could be high cortisol and the tests were just the wrong time.
I would check out some of the health pages under adrenal insufficiency.
thank you for all your advice - i am waiting for these tests urgently
its frustrating that the docs seem so clueless
no i dont crave sallt - no wierd tan - a few moles ? no vomiting or nausea
i will try and chase up docs but here in uk they always think they are right and patients are no really allowed to question them
i will read up more on this - i have done already which is why this makes no sense to me at all ?
It is sad, but few doctors including endos seem to understand the adrenals and their function.
You cannot quit steroids cold turkey - if you care too, you can wean back a bit on the dose and see if you feel better.
Typically one takes, for example (and this can vary!) upon waking 15mg, and then 5mg at 2 to 4 pm so as not to interfere with sleep. But some people need a tiny bit at night to sleep (not common). Some of the links deal with dosing and weaning. Be aware weaning is painful if you choose to do it.
Cortisol is a normally variable test - time of day is important for testing. It also needs to be tested several times.
yes thank you i am aware if cutting down steroids carefully as occasionally have to take some for asthma flare ups- my plan is to do the whole week as advised and then start to cut down as until i have the tests i have had two cortisol tests at different times of the day which supposedly give the same result but i will cut down slowly so that if they are wrong about all of this at least i am taking the lowest dose in the meantime
Ah... how much have you been on for your asthma? That could have totally hammered your adrenals - so you may have lost adrenal function from the inhalers.
It can go either way - some of my buds got Cushing's, some get AI...
Cortisol testing needs to be done at 8am fasting, or midnight to be useful. If they are the same at different times of day that is not good - cortisol normally varies. Hence why you have to know the diurnal rhythm and test for it.
The problem with AI is that it affects everyone differently. My docs had trouble with me at first because I gained a load of weight instead of losing...but had way low cortisol and, as we just found out, no aldosterone and low renin. So, don't be alarmed if you aren't "textbook". Perseverance is the name of the game with this disease.
I would also get another morning level or wait until the stim test. Starting at 30 mg out the gate is a little much. It really helps to build up and figuring out when to take your doses (the times and amounts vary by person). It took about 3 weeks for me to get my groove with cortisol, but it was noticeable within the first week. Florinef has been harder; I didn't get much at first because my body was sucking it up too quickly. It took 3 weeks to stick around, and then another month to realize the dose may have been too low (my bloodwork didn't change).
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