High Cortisol Level?

[Gemma]

Hi, I recently had 3 blood tests done for my cortisol level. 1st was done at 11:30 am and showed normal, but then was told by endocrinologist that I need to do it again before 9 AM, which I did and It showed double the normal. Also had ACTH challenge test done at the hospital, where they took blood then gave me hormone thru IV and they drew blood 3 more times every half an hour. 2 out of 4 times it sowed higher then normal. I haven't spoke to endo doc yet, because she is at conference, but my primary and another holistic doctor that I saw that it is abnormally high and that I need to treat it. She says this is where all my problems come from. She is running more tests for me to check for women hormones, Lyme disease and stuff, but says that I need to treat my adrenals. So, my questions is for anyone who had similar situation, Do people with dysautonomia tend to have high cortisol levels. This holistic doctor, says that once we get my hormones under control I will be fine. However the cardio doc that I saw, that diagnosed me with dysautonomia, didn't even bother checking my hormones. He just ran this ANSAR test on me and said, ok you have dysautonomia and we will treat it and gave me coreg, midi drive and amitriptoline and said she you in 3 month for retest. I couldn't tolerate the drugs he gave me so had to stop, but he says I should continue because this is the treatment he used before and it will work and I will be cured. But the other doctor says to stop all of the drugs except midodrine for the hypotension and she will have a different treatment for me which will be more towards balancing my hormones back to normal. So now I am even more confused who to trust. The cardio doc kind of specializes in autonomia, but he uses same treatment for all patients and when I tell him I have horrible side effects, he tells me to continue, my body is just adjusting. When I started coreg my cough was out of control, I called him, but he said no its not reaction because you don't have asthma so you shouldn't react to coreg like that. I called my other cardio doc and he said to stop imidiatly, because it definitely sounds like reaction. I stopped 3 days ago and the cough is subsiding. Now I don't even know if what I have is dysautonomia or something else. My diagnosed was based on symptoms and on this ANSAR test. This other doctor agrees that it is what I have probably, but she thinks that most of my symptoms are due to my adrenal glands overproducing cortisol.

Any advise on this? Maybe someone was in the similar situation. Thanks a lot. I am all new to this and even though feel symptoms for past 6 month, only found out about dysautonomia las 3 weeks ago.

[arizona girl]

Okay, I'd say you should always listen to what your body is telling you. Cough is a side effect of these kind of cardio meds. Unfortunately cardio meds may only control some of the symptoms, they do not treat cause. Many cardio's just treat symptoms and don't look for cause. I'm not surprised that you have encountered this.

Endocrine issues often cause dysautonomia symptoms. Treating the endocrine issues should help some of the symptoms as they will treat the underlying cause. I'd listen to the two docs that are in agreement. I have hashimoto thyroid and treating that has partially helped. I have more going on then that and treating my other causes has also helped control symptoms. I still don't feel great, but I've had improvements.

High cortisol is not common in pots, unless you have an endocrine issue. So it can be if you have that problem. I'd do the endocrine testing your doctors are recommending. If it turns out to be your cause, you will be fortunate as it is treatable, and in spite of a lot of testing many never are able to figure out what is triggering their pots. I'd say your on the right track.

[sue1234]

From what I've been told/researched over the years regarding cortisol things, so take it for what it's worth:

1. The ACTH test is run to make sure your cortisol at the least doubles. I don't think they are concerned how high it goes(unless it is really, really high!).

2. I think if they are concerned about high serum cortisol levels, they will probably have you do a 24-hour urine cortisol and possibly a midnight saliva cortisol.

I had blood tests that showed high-normal cortisol AND ACTH, but the urine test was low-normal. Odd results, but no doctor commented.

Let us know what your endocrinologist says about your results.

[looneymom]

Since this topic has been brought up, I wanted to know if any that have posted so far have sleep issues. I have been doing some research myself and understand that high cortisol levels can interfere with sleep. Several years ago my son had low cortisol levels in the morning. A headache specialist caught this in some blood work when my son was 11. I took my son to an endocrinologist and they just blew us off because of his age. Will having low cortisol levels cause sleep issues also? My son it two years older and still having sleep issues. Hummm, maybe it's time to see a new endocrinologist.

Gemma, thanks for posting. Keep us posted on your condition and what other test they do.

[Gemma]

I think you should definetly take your son to see another endocrinologist. I definetly know that high cortisol can interfere with sleep as doctor explained to me, but not sure about low levels. Did they do further testing for adrenal glands? Or just regular morning blood ttest. Also, how low was it? I had 2 moring blood tests. Then 24 urine test and also ACTH chalange test.

[Gemma]

Now she is running more tests for me, like women hormons and more complicated thyroid ones. I would love to do the mri of my pituitary gland if possible, but dont know if insurance will approve. Also, some test to check adrenals, like mri or ctscan (although not happy wih it because of radiation). Ohh, and my dhea was very low, which they said is not good when cortisol.is high and dhea is low means adreanals are very stressed and I am in constant anxiety state. But anyways, you should definetly investigate further into your sons adrenal glands state.

[looneymom]

Thanks Gemma. He has had some of these test ran two years ago. I know the morning blood test was low (2) out of range low. I know on the one that's supposed to double, he was ok. I'm not sure if he had the urine test. He has had a brain MRI with the dye, which was fine. But I think, I'll talk to the cardiologist and tell him what I suspect. He is really good about doing referrals in a timely manner. Hope you get some answers soon.

[margiebee]

I actually have very low cortisol, bordering on Addison's territory but not quite. The doctor who ran the test said if its not completely out of the range it doesn't matter, but later on my more "holistically minded" primary care doctor said that it could be something called adrenal fatigue which can be caused by the stress on your body from chronic illness, amongst other things. There was probably a point in time where my cortisol was constantly high from being in an anxiety type state all of the time, but apparently that wore down on my body and now I don't produce a lot of cortisol at all. I am trying some things to correct this.

But anyway, I don't think that all or most people with dysautonomia have high cortisol. I think it runs the gamut. The relationship is interesting though, as low cortisol can cause some dysautonomia related symptoms, especially orthostatic intolerance. Not sure about high cortisol but I bet there are related symptoms there too.

And Looneymom, I'm not sure what kind of sleep issues you are referring to but I have trouble getting a restful sleep, its not insomnia but I just can't fall into a deep sleep which leaves me tired in the mornings. I also struggle with chronic headaches as of late.

[Gemma]

Today I spoke with endocronologist and she said that she is not concerned with my high cortisol level. She said I could have been stressed or something and that is why it showed high. I am still concerned because it was double of normal. But she said that when they did ACTH challange test at the hospital my coritsol levels were within limit and I shoudl not be converned with that. Than I asked her if I need brain MRI to check for pituitary gland because together with my cortisol, my ACTH showed high as well. She said she sees no reason for an MRI, especially that I just had it done in summer of 2012 due to my lighheadness. She was concerned with my 24 urine test, because it was messed up. My creatinine showed low in urine, but normal in blood. Sodium was normal in urine and blood, aldosterone showed low in urine but within range in blood. Se wants to repeat the urine test. Now I am freaking out that I might have some kind of kedney desease. The more tests I do, the more stuff I find out, the worse my anxiety I get. Sometimes I just feel like I want to stop all the meds and stop going to docs and just pray or something like maditate and try to resolve my problems this way. Any advise anyone on all this aldosterone and creatine stuff? Thanks a lot for your replies. This forum is a life saver. I am so glad I joined it.

[looneymom]

Gemma,

Last summer my son had a blood test that showed low renin and aldosterone levels. His results were low ( out of range Low). This was another clue that was helpful to our cardiologist because it just reconfirmed the POTS diagnosis. Don't stop taking your medications and keep seeing doctors that you feel are trying to help you. Do you monitor your blood pressure daily? Right now, I am monitoring my son's hourly. It's a lot of work, but I think it will be worth it in the long run. He is only definitely going to be able to get off his florinif. By monitoring his blood pressure, I also know when he needs salt. Don't get discouraged. I think you will find the right medications and doctors that can help you. By the way, I've found an endocrinologist/immunologist the is interest in my son's case. His appointment is next month. Still waiting on 2 autoimmune blood test results.

[Gemma]

That is great! What autoimmune tests your son had done? I am going to redo the 24 hour urine test in couple of days. My blood aldosterone showed normal, so she thinks I did the urine test wrong. I saw another cardio doc today, the one that did a tilt tale test for me in march. He said that my test did show positive but not very positive, because I never really fainted and only felt like passing out when given the nitro pill to induce symptoms. He also said that he never heard that the combination of midodrine, coreg and amytriptoline can cure the dysautonomia as the other cardiologist said. He said that for me he would suggest a little dose of zoloft, becuase it was shown in studies that it does help people with dyautonomia to decrease the symptoms. Also continue midodrine and said I can increase to 5 mg in morning and then during day and evening 2.5 mg. Also, told me to exercise and ordered some special stockings for me. He said that it is very common for women of my age to develop these symptoms of low blood pressure and increased pulse. He also said that he can say that I do have POTs but not severe so its almost as I dont have it. I have couple of more appointments and will see what other doctors say. But i did see on this forum that some people did benefit from zoloft, so I might try it.

[looneymom]

My son is on Zoloft and is does help him with mood. If you have just POTS and no underlying condition, you will recover much quicker. Just be patient finding the right medications to help with symptoms. My son is also getting ready to try knee high compression stockings. Because he is super hypersensitive, we ordered an open toe with light compression to start out with. It took me forever to get this kid to wear socks again. I don't know how he ever got to this point. Out of all his symptoms, he says the headache and scalp pain are the worse. It's gotten to the point that he can barely wash his hair because of a painful scalp. I'm thinking the florinif might be causing this problem. Can't wait to get it out of his system.

For some people florinif works wonders. So if you are on it, give it a fair chance at least 2-3 months. My son never did have a severe reaction to this medication when he started it. In fact his blood pressures improved. However, he has been on it for over a year and half. His body has just outgrown the use of this medication according to blood pressure readings. When my son first started his medications for POTS, the cardiologist told me it would be a long haul with medications. You honestly need to give the medications time to see if they will work. This is the reason why I say be patient with your doctors.

The midodrine does help my son with his blood pressure, I learned this about a month ago. The cardiologist cut the dosage in half and boy howdy, his blood pressure took a nose dive. So the midodrine is staying.

As for test, we are still waiting on the HLA B 27 Antigen and Autoimmune Dysautonomia Evaluation test results. It takes about three weeks to get the results back. Should know by the week of July 8th. The waiting is unbearable.

As for exercise, if you can walk it's best. Walking provides the most benefit if your body can handle it. My son could not walk in the very beginning, so we got him a recumbent stationary bike. However, I may try to find him a rowing machine, if I can get him up and going again. He is not bedridden yet, but his

tremors just will not stop. With the tremors going, he can't ride the bike.

If you start exercise, go easy. You may feel really great, but you can over do it. MAYO told my son to ride the bike one minute a day and add another minute each new week. He rode the bike 3 days a week. Rested between days and rested on weekends. In my opinion, my son is exercise intolerant.

When his tremors stop, this is how he will start his exercise program again.

Glad to hear the good news. Keep working with your doctors and never give up. POTS can be a roller-coaster. Take it day by day and listen to your body.

[lfreem02]

Gemma - I wanted to follow up with you on what you have found since you started this discussion.

I have Dysautonomia (started two years ago-diagnosed a year ago), and was told that my sympathetic nervous system is triggering too much adrenaline to be produced. I went to see my GP this week to talk to her about my steady increase in weight since last summer, and she agreed that there is an issue. I have gained 30 lbs. in a little over a year. I have never had a weight issue, and lost all of the weight after I had my daughter 10 years ago. Based on my diet and exercise, I should be quite skinny (according to the doctor). The doctor ordered the following tests:

CBC

Vitamin B12

Comp. Metabolic

Cortisol, Serum

TFT/TSH (reflex test)

Vit-D

24 Hour Urine Free Cortisol

I have gained most of my weight in my abdomen, and have a round face, which are both signs of high cortisol levels, and Cushing Syndrome. I don’t know if the medications I have been on have caused an issue, or if the adrenaline is causing an issue.

[Gemma]

Hi. Did you take any hormone meds?

I was also yold that too much cortisol can lead to cushing syndrome. This info told me holistic doctor. I havent followed up on my cortisol levels yet. I think mine was elevated due to anxiety. I noticed my anxiety is out of control and I think i need to start some antidepressent ti calm down. I was trying to avoid those meds because went thru really bad time withdrawing from xanax. But i think i need to manage it somehow. My chest pains are really bad and each time i have them it turns into a panic attack.

Aks you doctor to also run 24 hour catecholamines tests, that includes coritsol and aldosterol and others. Also, make sure you cortisol needs to be drawn early in the morning, i think before 8 am and empty stomach. Also, when you do 24 hour urine test for hormones and blood test for hormones you can not be on hormone therapy for some time. I had to be off flurinef to do that test.

Sorry, dont have any new info for you, but hope some of the above is helpfull.

Also, holistic docotor checked some extra thyroid tests, like reverse t3 or something, lyme disease, also, insuline resistence test (which was almost on border line and I am retesing it now). Insuline resistence can also be elevated due to body going thru a constant stress.

Ohh, our condition is so complicated and so much is uknown and we always trying to find what caused what, but after so many docs visits, so many nights of researching stuff, I still dont know why this is happening in my body. Sometimes I just feel like i want to stop searching and just wait for a miracle to happen.

[1kate1]

I chased a high cortisol diagnosis for two years. Everything came back positive and I even did a petrosal sinus sampling (cather run into the pituitary) but that came back negative. I was told I had cushings syndrome - but I was thin and cushings patients are always heavy with round moon faces. Finally I did a sleep study (desperate to try anything) and found I had sleep apnea! I got a CPAP but it didn't help much so I went to an ENT to check for obstructions. Turns out I had narrow nasal airways and low grade allergies causing congestion - and making me not get enough air when I slept. Suffocating will cause your cortisol to go up. I had a balloon sinuplasty and allergy meds and the suffocating stopped and the cortisol went to normal levels. Hard to believe but it is true. Endocrinologists are trained to think that high cortisol means cushings, but other things can cause elevated cortisol - and when cortisol is elevated it messes with all the other hormones, especially the adrenal ones.

[sue1234]

1kate1, when you say narrow nasal passages, do you mean inside the nose OR, do you have a narrow nose all around? I have a narrow nose and always feel like I can't get enough air in. And, I'm a total nose breather, so I hate it!

[lfreem02]

I got my Cortisol level results back, and on a scale of 4-23 it was 31. So, I have been referred to an Endocrinologist. I am doing the 24 hour urine test today, and will hopefully have the result in a few days.

[1kate1]

1kate1, when you say narrow nasal passages, do you mean inside the nose OR, do you have a narrow nose all around? I have a narrow nose and always feel like I can't get enough air in. And, I'm a total nose breather, so I hate it!

Hi Sue 1234,

The inside airways of my nose were narrowed by enlarged turbinets so not enough air was getting thru - check with an ENT who does balloon sinuplasty - DON'T get the traditional surgery or you'll take week to heal!