Adrenaline spikes: Med detective needed, award given

Posted by sierrawoods @sierrawoods, Feb 20, 2018

I'm desperate for help. If I was rich, I'd pay a million $ to get answers. It's hard to summarize: I am a 59 yr old woman. 8 yrs ago I started having what feels like strong adrenaline rushes during the night and especially in the early morning. They disrupt my sleep making me severely sleep deprived. It used to happen a few times a month but in the last year, has been happening daily. This is not as simple as anxiety. My life is not particularly stressful compared to years ago and I've always handled stress well. Physical symptoms come first, then anxiety from adrenaline comes after. On rare days, If I sleep through the night, I wake with excess adrenaline and will be hyper the whole day and evening. Sometimes, I will have a severe "crash" in the afternoon with all kinds of symptoms that have me couch-bound. I take a tiny dose of Amitriptyline (10 mg) before bed to help with sleep, but it's obviously not working well enough. I am on Synthroid for non-Hashimoto's Hypothyroidism since 1996. Despite being 59 yrs old, I am not yet officially in menopause (last period was May 2017). TSH, fT4, fT3 are normal. Urine catecholamines (epinephrine & norepinephrine) are normal (although that does not necessarily reflect what is in the brain). Plasma ACTH is normal. I've tested negative for autoimmune disorders. Cortisol was high a few years ago (34.3 mcg/dL) but it's currently high-normal. DHEAS normal. Accompanying the start of this was phantosmia and occasional RLS. My diet is excellent, including a few good supplements. Until last yr when it started happening daily, I was exercising 6 days/wk. I cannot tolerate it any more - any exercise beyond mild cardio/aerobic causes an increase in symptoms. I meditate and have tried all kinds of herbal teas. I've experimented with different possible solutions, to no avail. I'm a voracious researcher (only legit sites) and still cannot figure this out. I'm normally a positive, active, happy person who loves to help others but this is ruining my life. I cannot make any plans, cannot get my work done, cannot even visit friends. I had to stop my volunteer work with children. 🙁 I'm starting to become depressed and hopeless. I've been to a total of about 9 doctors about this problem and they just shrug their shoulders and send me hope with more disappointment. The only help offered was an addictive prescription for benzos but I refuse to be treated for something without knowing the cause. Ideas: an atypical tumor on my pituitary or adrenal glands? Maybe, but I can't get a doctor to order the necessary MRIs. Perhaps not endocrine but a sleep disorder? High A.M. adrenaline is typical for sleep apnea but it should not cause these severe symptoms, and I really do not think I have sleep apnea (I don't have other symptoms). A neurological disorder? Maybe, but I can't get a doctor to order an MRI of my brain to make sure my pituitary gland is okay. If you've gotten through this far and you have any thoughts, please chime in. If your idea leads to a proper diagnosis and I get well (or treated properly) I will be your slave for life 😉 Okay, seriously. I'm not in a good place right now.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

sierrawoods | @sierrawoods | Feb 20, 2018

I will add this: If I get a solution to this problem, I will be so overjoyed that I will spread the information widely...here and everywhere I have the opportunity. These boards are wonderful for patients and I look forward to getting more involved. People are suffering and we need to support each other. This is a great way to do so.

jigglejaws94 | @jigglejaws94 | Feb 20, 2018

I'm assuming that you've been evaluated for pheochromocytoma since you mentioned catecholamines were normal. That came to mind. Hormonal imbalance or adrenal dysfunction --- something is telling your brain to produce more epinephrine. There is a breakdown in the communication. Autonomic dysfunction?

jigglejaws94 | @jigglejaws94 | Feb 20, 2018

Apparently you can have normal catecholamines but still have pheochromocytoma.
https://www.ncbi.nlm.nih.gov/pubmed/16982588

Gary, Alumni Mentor | @gman007 | Feb 20, 2018

@sierrawoods, Welcome to the group and I hope someone has the solution to your riddle. When you wake up with this high adrenaline, do you have any other physical symptoms? The reason for the question is that I awake feeling as if everything inside my body is vibrating. Yea, I know that is weird, but I can not find any other way to describe it. The best answer I have found in researching is that I am have a panic attack in my sleep. I have no dreams, or at least any remembrance of them. I do not understand how this is possible, but that is the best answer I have found. It is a bit disconcerting, but not really painful, just strange. If you find your answer, I will be very interested in what you learn. Would someone please try to help Sierra find an answer or point in that direction?

jigglejaws94 | @jigglejaws94 | Feb 20, 2018

Have you been evaluated for paraganglioma?
http://columbiasurgery.org/conditions-and-treatments/paraganglioma

Lisa Lucier, Moderator | @lisalucier | Feb 20, 2018

Hello, @sierrawoods -- I'd like to add my welcome to Mayo Clinic Connect. That really does sound frustrating.

As I'm guessing you are aware, we don't offer medical diagnoses through this online community, but we do have some lay "medical detectives" or members who have been through complicated "mystery illnesses" who may be of help. I thought you might like to meet @oldkarl, @krista, @lanitawynnyoung, @tiffie, @seelindsay, @gailb, @cclong, @kdubois, @lily2013, @jodyalbright, @mariah1 and @vdouglas. @johnbishop and @contentandwell may also have a thought.

Does the timing when the adrenaline rushes started seem to correlate with any medications you started or other significant happening, @sierrawoods ?

John, Volunteer Mentor | @johnbishop | Feb 20, 2018

Hello @sierrawoods -- I can share my favorite research search engine...in case you aren't already using it. Google Scholar - https://scholar.google.com/ - It will find a lot of research articles, studies and more. One of the benefits is being able to sort the links by Year to find the latest info for a topic.

Hope you find some answer soon!
~ John

Parus | @parus | Feb 20, 2018

Join the crowd. I hope you are more successful. There surely are answers for many of us somewhere...I had requested a hormonal work up and this request went nowhere. Will be following this to see if I can learn more. Thanks for the post.

JK | @contentandwell | Feb 21, 2018

In reply to @lisalucier "Hello, @sierrawoods -- I'd like to add my welcome to Mayo Clinic Connect. That really does..." + (show)

@lisalucier @sierrawoods Hi. I wish I could contribute but this is not something with which I am remotely familiar. It did take me a while to get a diagnosis of my non-alcoholic cirrhosis but that's where the commonality ends. I did do some research myself but I really was not looking for the pertinent things apparently, I got nowhere. I think my doctor should have though.
JK

Kelly, Alumna Mentor | @kdubois | Mar 24, 2018

Hello @sierrawoods... after taking myself to Mayo, we learned that I had been misdiagnosed by my home medical center with a rare endocrine condition, and Mayo figured out that all of my symptoms were caused by medications/drugs building up in my body for 12 years. They figured out the genetically, I don't properly-metabolize most medications, and the result of these drugs building up inside of me showed clinically as endocrine symptoms. Have you had pharmacogenomics testing done?