I’ve been having some orthostatic hypotension with no real reason, so my doctor ordered a bunch of blood tests. Everything was normal. My cortisol level was 5. And the range is 3-10. However I expected it to be high dealing with some stress at that time.
My doctor thinks that it’s not an issue and didn’t order any other adrenal tests.
Maybe I’m just a little over worried about other autoimmune diseases.
I’ve already had eczema diagnosed a few months after type 1, also had a rare cancer at age 26. Parotid carcinoadenoma.
I know cancer isn’t auto immune, but it is a failure of the immune system. So am I facing the possibility of Addison’s disease on top of this lifetime of t1 for 33 years.
I mean when I think about my health I feel very healthy but when I write it out, I’ve dodged a few bullets. I also have duputrens contracture but it’s not bothering me at all. But I think that’s more a genetic thing.
So who here is an adrenal expert so I can stop worrying about it. I don’t have the other addisons symptoms.
Hi Timothy.
I have recently diagnosed Addison‘s. I’m not an expert, but I have done some research. FYI, I’ve also had T1 for 52 years now as well as Graves Disease 30 years ago (they ablated my thyroid back then, and I take medicine to replace needed thyroxine.)
These three diseases make me a rare inhabitant of the PAS category- Polyglandular Autoimmune Syndrome.
As for the low BPs I had those for 8 years before I could get a diagnosis. Apparently, a person’s adrenal cortex has to be 90% destroyed before they will test positive for Addison’s. Last summer my symptoms became unbearable: Daily nausea, chills, grizzly headache, during prolonged low BP periods in the low 80’s/40’s where I’d have to stay prone to not faint. Just hung out in bed. Also very low blood sodium and chloride and very dilute urine, way decreased insulin requirement (by half), increased thyroid needs as well as exhaustion. Even then I tested in the low grey area between yea and nay on Addison’s. But the doc put me on Cortisone and Fludrocortisone to see if it helped. It was like night and day. Gave me back my life.
Here is an article about Addison’s if you’re interested.
Good luck figuring it out. I believe Addison’s is waaaay under diagnosed. I was tested 6 years ago and told I was normal. I was not!!
Thanks that’s some good stuff to mull over.
I can say as a behavioral sciences researcher, one time measurements of cortisol are useless when it comes to linking cortisol responses to stress. You can’t look at a single level and necessarily expect to see stress reflected in it, especially since it changes throughout the day and potentially as you experience stress and inflammation (and as those recede), all relative to whatever your baseline is. When we study this in people, we take many measurements across a period of time and look at changes (or lack thereof), ideally controlling for time of day, etc, and even then cortisol is notoriously a difficult thing to measure and work with. So I would not interpret your reading of 5 as odd in the context of recent stressors. Now if you have numerous clinical symptoms of a cortisol-related disease, that’s different, and would likely require further testing. But you don’t mention any symptoms, just this test result, so if that’s the case I would think your doctor is correct.
My only symptom is hypotension. And it is otherwise unexplained. Especially noticed when I stand up. I get light headed and my vision goes dark for a second.
Ok then that’s a major stretch to go from that to cortisol problems. There’s no evidence for that.
Orthostatic hypotension can happen to lots of people. Can be a side effect of medications, but also happen for any number of other reasons. In and of itself, it’s really annoying, but if you aren’t fainting, not necessarily dangerous or an indicator of any severe problem. Drink way more fluids and increase electrolytes (I like Gatorade Zero in the summer and well salted broth in the winter, and there are stevia-sweetened electrolyte powders available as well), plus avoid going from laying down right to standing.
Yes I went the dehydration route already. I know I’m not dehydrated. My potassium is slightly high. Just like my cortisol is low but not below the threshold. I also lost weight for no reason. About 10 lbs. The odd thing is that my blood pressure was always normal and suddenly it changed. I was around 130/85. For years. Mind you that’s what one expects in a 54 year old man with no meds other than insulin. However it drastically changed to 115/60 on average. I would prefer it be something simpler. I’m going to do a treadmill test next month because I badgered my doc Into ordering it. I exercise a lot so I’m not expecting it to be a problem but I want to rule my heart out
But your cortisol isn’t low?
I’d be more concerned about ruling out thyroid stuff given that symptom list–would probably ask for a complete panel of that, including the urine iodine testing and testing for thyroid antibodies, since just the standard TSH etc can fail to capture thyroid issues, and they are commonly comorbid with T1D.
Also are you eating low carb and/or did your diet change in any way recently? That could explain everything you’re describing. If so, it’s amazing how much more of both fluids and salts a person needs when low carb.
My thyroid tests are normal. And maybe my diet would be considered low carb but it’s not really in the diabetic world I can eat 100 carbs a day. I really don’t limit them just count them. I don’t like sweets unless I’m low then I can eat a whole cake that is pretty rare since cgm though. My pump says I use about 30 units a day. Biggest is 32 in the past 2 weeks. My insulin to carb is 1:15 like it has always been. I eat pretty much the same as I always have.
I wouldnt even have thought of Addison’s if my endo hadn’t done all the tests. Then I went and read about it. Which I know is asking for it. So I narrowed it down to addisons or pregnancy.
Oh yea and my cortisol is 5 on a scale 3.75-15.
So that’s kinda lowish. I mean autoimmune stuff doesn’t happen overnight.
I have lots of symptoms of low thyroid, but because my numbers are always “in range”, though usually just above the bottom of the scale (even have had it slightly below), they claim there is nothing wrong. Some doctors worship the reference range, but some realize that just because you are in range doesn’t necessarily mean it is the right level for you personally.
I basically gave up on searching for answers and just live with feeling like crap all the time lol.