The problem with cortisol is that high cortisol and low cortisol make you tired. So you need to test in the morning - and at other times of the day as your diurnal rhythm may be skewed.
Weight loss points to low, but ... if you really have it your doc should have you in for regular appointments - after all, this is a life threatening disease, you need regular scripts and things change etc... so one appt and that is it? Really!!!
I would find another doctor and get on at least hydrocortisone - and there may be other medications that may help you like florinef and dhea etc but it just does not sound to me like you were diagnosed properly and your replacement well, just is not standard. I would not take it in an emergency (and you probably don't have anything else) as you need something to get you over the hump and to last a bit longer...
Cortisol normal waxes and wanes... you have to test a bit to figure out what is going on.
Thanks for the response, I am a little frustrated as well.
Here is what happened in a nutshell. I saw him for annual appointment (he started me on florinef a year ago for low blood pressure). At this appointment my BP was still very low, blood tests showed low blood sugar on a few occasions and I'd lost over 20lbs without trying. He suspect AI, so he tested for cortisol, acth, glucose, etc & 24 hour UFC. 24 hour UFC was low, serum cortisol was normal but inappropriately low due to low blood sugar of 2.6. His office called, said blood tests confirmed AI, sent me a prescription for 25mh of Cortisone Acetate to take daily. His office said no need to see him, just keep my 6 months appointment and he'll retest 24 hour urine and serum cortisol to see how my levels are. If better...stay on dose, if worse, up dose type of deal.
And this is where I am now, just waiting until I see him again and hoping this 25mg works.
Is Cortisone Acetate not good? I never spoke to him, I just got it the prescription faxed to my pharmacy. They said there was no reason to come see doctor again. Now I'm even more confused haha. So using this med will supress my adrenals from working at all? That worries me because maybe I am not low after all. Urine Free Cortisol was 50 when range is 55 - 250, that is barely low. AM Serum Cortisol was 360 when range is 185-700. He said it should of spiked over 500 because serum glucose was low at 2.6, but in that, he may be wrong. If I had a drastically low UFC or my AM serum was in the low range, I'd be more convinced. But on the other hand, I have all the symptoms of AI except no hyperpigmentation.
Anyways sorry for the rant, you just got me thinking.
thanks again and please let me know if there is anything I should ask him as this is new to me, and I said..my doctor has told me nothing.
Cortisone acetate? Not Hydrocrotisone? The latter has a very short half life.
I don't know if a blood test works to show if the meds are working - my docs do a 24 hour urine test (man, I hate that test) and say that is not perfect but the best they have...
Shame no word on stress dosing etc - after all - he suppresses your adrenals fully and hangs you out to dry???
No he didn't test either of them. He only ran the Serum AM Cortisol, Glucose, Creatinine, Sodium, Potassium & ACTH (but this test did not complete due to lab error). He also ran 24 hour urine free cortisol. He then saw the Serum Glucose was low and while the AM Cortisol was low-normal, it wasn't as high as it should be for the hypoglycemia levels. Then with the UFC back low, he just called me a said I need to take 25mg of cortisone acetate daily. He said he'd recheck my blood in 3 months to see if a dosage change is needed or if 25mg is adequate. He told me nothing about AI or any further testing, or what caused it, just left me to dry really lol
I do crave salt actually, no matter how much I eat though, while taking Fludrocortisone (florinef), my serum sodium was still 135 (range 135-150). I'll be sure to mention what you said here when I see him in 3 months, thanks a lot!
Besides sodium - did your doc test renin and aldosterone? That is what effects blood pressure in the adrenals. Your abnormality may be in that axis.
Do you crave salt?
Hi Kevieb, thanks for the response.
That is really good to know that she is old enough, this way you must feel much more rest assured that the test is right :-) I know first hand what undiagnosed Celiac can do. They estimated I had it a long time as I was at moderate villous atrophy at only age 22 and I had a pacemaker put in at 21 for a dangerous slow heart rate. Heart is mechanically fine, just Celiac damaged my autonomic nerves slowing my heart down. Also my bone marrow started to become supressed until I finally got diagnosed. People feel it is just a "tummy ache" diasease, but is not an allergy, it is a serious autoimmune condition just like the others. It frustrates me sometimes when some people act like Celiac is not a problem, sorry for the rant haha I'm sure you've run across what I mean :-)
I have read about the ACTH stim test, so I see how it works to help in the diagnosis now, thanks. My doctor just order serum AM cortisol and serum ACTH (not the stim). The lab made made a mistake and didn't take a tube for the ACTH, so it was left off. My doctor made the diagnosis of AI based on having very low blood pressure, low blood sugar, low sodium and weight loss (about 25lbs in 6 months, already small guy but now 135 at 5'9"). With all that plus a serum cortisol of 369 (he said my cortisol should of spiked as a stress response to a glucose of 2.6, so it should of been > 500) and with a urine free cortisol of 50 (55 - 250), that it was enough to start taking the meds.
I would ask for more tests to find out of it is primary or secondary, but I think it is likely secondary and I'm not sure if the stim test will be accurate now that I'll be on meds 3 months before I see him to check for improvement. I am a little worried it is not AI after all. For starters, he's going by cortisol not spiking, but technically is still falls in range and my UFC is only 5 below the minimum, not very low. But with all my symptoms, may he is right, he is the endo after all haha.
No worries about the GF ideas, just whenever you get a second I'd love to get some fresh ideas. Feel free to post it here or leave me a note on my profile.
my daughter is old enough for the Ttg test to be accurate--it is usually under 3 years old that they are not accurate.
the ACTH stim test indicated that i have secondary adrenal insufficiency--meaning it is caused by my pituitary not producing enough Acth to tell the adrenals to work. i never reached the peak levels they wanted with the stim test, plus my ACTH was low and my cortisol was low. low ACTH and poor reaction to the stim test were the clues to diagnosis---i also had an mri of my pituitary--but it showed no disease or tumors. the doc told me that sometimes some of the cells just stop working.
i've never heard anything about what the cortisol levels have to be for hypoglycemia, i just know that cortisol controls how we metabolize sugar---so it is definitely a symptom of adrenal insufficiency.
i don't think you can dilute your cortisol levels. but it does make sence that the low levels of creatine could be from diluted urin because i know that being dehydrated can raise your levels. i'll get back to you about gluten free foods--i've got to go to bed.
Sorry, don't be confused by the change of names from StillTired24 to Dantetila. Dantetila is my old userid that I eventually changed, but I logged in with it by mistake haha.
I'm glad to hear your daughter does not have Celiac Disease, but remember the blood test can be wrong, especially at a young age, so keep an eye on it. My best wishes go out to her in feeling better.
I agree with you on treating symptoms as the ranges are WAYYYYY to broad in some cases.
I got the 24 hour urine cortisol results today and it was low, here are the results:
Urine Free Cortisol: 50 (range 55 - 250)
Urine Creatinine: 2.1 (range 6 - 20)
I am confused as to why my Creatinine was so low. My blood creatinine was on the lower end of normal, but not abnormal. I heard low muscle mass can cause this, as I have lost 25lbs in the last 4 months (25 year old male down to 135lbs at 5 foot 8). Not sure why I am losing weight, but am struggling to keep it on. Either way, my endo called and said I need to take Cortisone 25mg daily due to adrenal insufficiency and wants to recheck blood in 3 month to see if my Free Cortisol has improved. I read online that low creatinine in urine is caused by drinking too much or medical issues causing excess water in urine. I'm just worried if it is diluted for some reason that my cortisol is also diluted and is not trully low.
As for the serum cortisol, I read online that Cortisol should be over 500 when you have moderate hypoglycemia, so in that case, my serum Cortisol was actually low. I just really want to make sure I need to take Cortisone before I start it for life. I am only starting with 25mg of Cortisone Acetate daily, but I would prefer to be on nothing.
Also, were you ever tested for why you had adrenal insufficiency. I'm assuming if it was Addison's disease that my Cortisol would of been much lower, even with the hypoglycemia. If it is secondary, I'd just like to know why. Did you have further testing? He did run an ACTH test, but as I said before, the lab messed up and never did it.
Thanks for all your help!! By the way, what are some of your favourite GF recipes as I am getting bored lately.
sounds like you have a good endo---he seems to want to treat the symptoms, not just the blood test. it seems to me that so many things that they test for have such a broad range of what is considered normal. i don't know how they can tell what is normal for each different individual.
our ped gi just called me and told me that my youngest does NOT have celiac disease. we just had her blood tested again because she had a fundo when she was an infant--she can't throw up, but she wretches and spits when she is nauseated. she has been complaining of tummy aches alot recently and had a couple of episodes of wretching---so we had to suspect celiac since we know her genetics.
i hate the low blood sugar thing---i have been dealing with it for over 20 years. i always make sure i have something with me to eat when i travel. i sometimes have to come home from church to eat something and then go back. when i was first put on hydrocortisone my glucose levels actually went up to a fasting level of 113, which worried me a little, but it went back down and my a1c level is ok---and i am back to getting low blood sugar symptoms---but i don't eat sometimes because i don't have much of an appetite.
i'll be interested to hear what your endo says---and let me know if you need any good gluten free ideas. we have been able to reproduce almost everything. we pretty much eat the same things we ate before diagnosis, we just use different ingredients. we have even made frog eye salad with whole pearl tapioca and you couldn't even tell the difference!!
we cook all of our meals gluten free, but we keep bread,cereal and crackers around for the rest of the family.
First off, thank you so much for taking the time to respond with such a detailed reply. My heart goes out to you and your children, as I know first hand how difficult living a strict gluten free diet can be. On that note, I am very strict with my GF diet. I was diagnosed almost two years ago in Marsh 3B, so close to complete villous atrophy. I was very sick at the time, but am doing much better.
You have the same opinion as my Endo, low blood pressure, low blood sugar, lower sodium, all looking like adrenal issues. In his office he told me I am to start a low dose of Cortisone medication regardless of the test results, because he is confident I am having some form of an adrenal issue. He said likely it is in the subclinical stages, so he is doing a trial with the medication for 6 months.
As for the ACTH, he did test me for a baseline serum ACTH. Unfortunately the lab made an error and left it off the results, so I don't have any info on that. It was just the baseline ACTH, not the stim ACTH test. It may be that the next step will be to do that, as he is waiting for the 24 hour urinalysis results first.
I always thought Celiac might be the blood sugar issue, but I am strict with my diet, so I just don't see why it would be an issue. It just seems too odd that all my symptoms are in the adrenal category, but then again, why is my cortisol level ok. I have read that when you are hypoglycemic, your cortisol should be higher to control your glucose levels, so I was thinking maybe the Cortisol level was normal, but not normal in proportion to my glucose levels. Just a guess, but I will find out soon I hope.
Thanks again for your reply and best wishes to you and your family. I will let you know when my Endo calls me with more information.
i just re-read my post to you-----my blood pressure dropped, not my blood sugar, when i went from sitting to standing----what a ditz!!!
i have 3 children with celiac disease. we got in on a celiac study done through the university of california,irvine. we now know that my husband and i and 8 of my 9 children all are DQ2 positive. i don't know why the disease activated in only 3 of my children and no one else---at least not yet. my celiac children are all girls--identical twins that just turned 20 and a 16 year old. they were all diagnosed at the same time 5 1/2 years ago. my oldest daughter called me one day from college to tell me that she had learned in one of her classes that there is a connection between celiac and addison's disease---but it doesn't sound like you have addison's disease.
i have had problems with hypoglycemia for years, but never had an official diagnosis. during one of my blood workups with the endo, it did show that i had "mild hypoglycemia". i have also been diagnosed with secondary adrenal insufficiency----and i learned that cortisol is what regulates your blood sugar. i've had my blood sugar drop on me when i went from sitting to standing off and on for years--but it hasn't been an issue in a while for me---it is a symptom of adrenal problems, though.
they used a different measurement when my cortisol levels were checked and when they did the ACTH stimulation test---so i don't know how to compare your results in any way to my results. the bottom level for cortisol was 5 and my level was 2.4--so it was definitely low. my stim test raised to 9. something at 30 minutes and 11.something at 60 minutes. my endo diagnosed me with secondary adrenal insufficiency---but i have since learned that a different doctor could have interpreted the stim test as normal. some look for your levels to double at 30 minutes---some look for your levels to go over 20 to consider them normal. i have not been happy with my endo and will be seeing a new one in 2 weeks.
your blood sugar, sodium levels, and blood pressure all look like adrenal symptoms---but according to the range of your test, your adrenal levels look normal.
have you ever had your ACTH levels checked or had an ACTH stimulation test done?
i wonder if your your low blood sugar could be connected to your celiac---are you pretty strict about your diet? if not, you could have intestinal damage---even without symptoms----and you might not be absorbing enough nutrients. all 3 of my girls had different symptoms when they were diagnosed---one of them had nausea and diahreah (can never spell that!) one of them had rashes, and the other one had no symptoms at all---except that she was so thin she almost looked emaciated in a swimsuit. incidentally, we had been having all kinds of tests done trying to figure out why the one child was always nauseated---but it was the rashes and where they were located that clued us in to the possibility of celiac---and that was because i had been researching rashes on the internet and ran across the description of dermatitis herpetiformis.