Hi everyone. I'm new here. I stumbled upon this board tonight, and I'm hoping you all might have some ideas for me.
I've been having some symptoms for the last couple of months that seem to be getting worse with time. My blood pressure is dropping -- every day now -- to 80s/40s and sometimes as low as 70s/30s. When this happens, I get extremely dizzy and I can't stay awake. It usually occurs in the evenings, but it has also happened in the afternoon. My blood sugar is also dropping if I go more than 2.5-3 hours without eating. It gets down to the 50s and I start shaking. It goes back to normal shortly after eating. I've been dealing with insomnia for almost a year -- not falling asleep until around 5:00am. Sleeping pills help while I take them, but when I stop them, I'm back to not sleeping. I'm also having headaches, having a hard time concentrating and my memory is not as good as it used to be. I'm 33 years old -- too young to be as forgetful as I am. Also, I'm tired almost all of the time, during the day and even during the night when I can't sleep.
I went to see my doctor and she ran a bunch of blood tests. Everything came back normal except my cortisol, so she ran that one again. My results:
4pm: 24.1 (reference range of 3.1-16.7 ug/dL)
8am (fasting): 41.8 (reference range of 4.3-22.4)
My doctor sent me to an endocrinologist, who told me she thinks this is all due to stress. I have had a lot of stressful events in my life for the last three years, but I feel like I'm coping well with it and I wouldn't describe myself as "stressed." My internist says stress alone could not cause my cortisol levels to be this high. Does anyone have any experience with this? I know my numbers are out of range, but I don't know how high coritsol levels would be to indicate a tumor or something serious like that. I am at my ideal weight for my height, so just upon looking at me, the endocrinologist ruled out Cushing's.
My endocrinologist is testing my thyroid, blood sugar and cortisol again (with a dexamethasone test this time), but I don't have results yet. Any other suggestions for what I should look at?
Thank you for any ideas!
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The Following User Says Thank You to riley5 For This Useful Post: Truthseeker0219 (04-28-2012)
It is my understanding that the level you are showing could be stress-induced. Especially if they are only single measurements. The "cutoff" that is supposed to signal Cushing's syndromes is four times the test's highest normal range. This is usually used with 24 hr. urine free cortisol measurments, as plasma measurements can be high due simply to the "stress" of the needle stick (depending on the person). I don't agree that the endo is misguided or feeding you a line. I am sure he will probably want a 24 hour measurement and a suppression test.
No, not all Cushing's people are overweight, especially early in the disease. However it requires pretty vigorous and routine exercise to not be overweight after a while.
Yes, they were only single cortisol tests. I took the dexamethasone supprression test this morning. The endo said she might want to do an ACTH test depending on what this one shows. She hasn't mentioned a 24-hour cortisol test. I don't know what she'd be looking for with the ACTH test. I really don't understand any of this, and she's hedging all my questions, which is making me nervous.
She just called me with a couple of test results. Thyorid tests are normal and negative for antibodies, so she said my thryoid is functioning well. I tested "impaired tolerance" or "pre-diabetic" on the glucose tolerance test. She said this can't cause the lightheadedness and passing out that I'm having just about every evening though.
Does anyone know if high cortisol and pre-diabetes are related? Or could they be symptoms that point to something else?
My doctor is not explaining much of anything to me, so I really appreciate any ideas that anyone can share with me!
I am not scared of needles at all, so I can't see that raising my cortisol levels.
What are UFCs?
You are the second person to mention cyclical Cushing's to me. I need to remember to ask my endocrinoligst about this.
Interesting that you mention blood sugars raising cortisol. I was wondering if the high cortisol could cause problems with glucose...i.e., could the cortisol be causing me to be prediabetic.
Other than stress and Cushing's, what else can cause elevated cortisol? My father passed away from leukemia last year, and he was prediabetic before his diagnosis. It would get better right after chemo and then flare up into full diabetes as his leukemia progressed. Could a serious illness like that cause cortisol to increase too?
Thank you all! You are providing me with far more information than my endo is!
Did your doctor give you a copy of your test results, especially the thyroid? My cortisol is elevated with hypothyroidism. The two are not necessarily synonomous--but they can be. Many thryoid patients who test "normal" are actually not at their ideal levels. All the symptoms you mentioned could be related to your thyroid. I would definately get a copy from your doctor--they have to give you one. Then I would post your results on the thyroid board to get opinions. Good Luck.
My internist has faxed me the results from the tests she ran, but my endocrinologist has not. I meant to ask her about it yesterday, and I forgot all about it until I just read your message. My memory is terrible right now -- thank you for the reminder!
My endocrinologist called this afternoon with results from my dexamethasone suppression test last week. She said my cortisol was suppressed to 2.6, so that means she has "no suspicion of cortisol abnormality." I asked what is causing my cortisol to be high and my passing out and she said "nothing endocrine." I guess that means she thinks it's stress. She's going to fax my results to my internist, and I'll talk with her tomorrow about where we go from here. I'm relieved to think I don't have a tumor, but I don't know what to do about the symptoms I'm having.
Thanks for your response, Anne. I think you're right about this endo. I wasn't impressed with her at all, and if I need continuing endo care, it will be by someone else.
I talked with my internist yesterday. She wants me to see my cardiologist this week. I have a heart condition (inverted p wave), and she said that could account for at least some of my symtpoms. She suggested that maybe there is more than one thing going on right now. She said if the cardiologist doesn't find anything, she wants me to go for a second opinion to another endo.
She said she's still confused by this because my symptoms are more typical of Addison's but my blood levels don't support that. She also said that she does not believe this is stress because stress isn't consistent with my low blood pressures and low blood sugars. She thinks there's something else going on and we have to keep digging.
My internist also is not convinced that I'm insulin resistant. She says that could be caused by the high cortisol. Once we figure out why the cortisol is high and we can hopefully bring it back down, she wants to recheck my glucose and insulin levels.
So, now my question is, how do you find an endo who knows what they're doing when it comes to increased cortisol levels? I can find a lot of specialists in the area (metro Atlanta) who deal with diabetes, but none who specialize in Cushing's, Addison's or cortisol issues. Is there someplace to look up doctors with these specialties?