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. šŸ™ 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 šŸ˜‰ Okay, seriously. I'm not in a good place right now.

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@amandajro

Hello and welcome to Mayo Clinic Connect, @gmerrill80. It sounds like you might have been responding to @stevetaylor721 so thought I would tag them so the pair of you can discuss your common symptoms and experiences a bit more.

Do you experience middle of the night symptoms as well?

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yes I do

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@stevetaylor721

Same type of symptoms for me. Started after a bicep surgery and general anesthesia/ventilator. That was 7 weeks ago and Iā€™ve been in terrible shape since. Canā€™t work, canā€™t provide for my family, canā€™t socialize or function. Just trying to survive every minute of the day and make it through to the next cycle starting at 3AM. My symptoms are exactly the same except oddly my heart rate stays low or actually drops during the adrenaline attacks. In fact, my heart resting rate has plummeted since the surgery from mid 70s before to mid 50s (even into the 40s) now. Iā€™ve also dropped more than 35lbs since the surgery 7 weeks ago despite eating. Somewhere someone has been diagnosed with whatever is afflicting us. It is 100% physical and not at all anxiety. The docs have not been able to figure it out. I guess we are in limbo until someone somewhere stumbles upon this forum and shares a diagnosis. Im sure like many of you, I just donā€™t feel like this is much of a life and it sure isnā€™t worth going on like this indefinitely. It is a pretty hopeless feeling.

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I am going to an endocrinologist in a couple of weeks. I know how it feels when one cannot get a diagnosis that gets your life back to normal. Lets hang in there.

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@gmerrill80

I am going to an endocrinologist in a couple of weeks. I know how it feels when one cannot get a diagnosis that gets your life back to normal. Lets hang in there.

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Good luck to you and I hope you get your answers. Iā€™ve got some testing starting today that I hope will show something. A full abdominal CT scan. Iā€™ve continued to struggle each day and feel like I am getting further from recovery, not closer. The last few days Iā€™ve woken up with a ā€œbuzzingā€ sensation throughout my whole body, pounding head and then extreme jitters and nausea. Unfortunately this has not gone away at all. It may get more subtle during the day, and I have periods where I feel relatively better, but it comes back to really whack me. I am absolutely worn out physically and mentally, havenā€™t been able to go back to work for more than a couple of hours at a time, and am very concerned about providing for my family as leave and money are running out- so I hope for an answer soon! Iā€™m not sure the local doctors I have seen have the resources or experience to figure out what is going on with me, but I know my primary is trying. It is just a very complicated case and I do understand that as I was an active and healthy 48 year old until 8 weeks ago. The endocrinologist I saw told me the local docs would be unlikely to have much luck and tried to get me into Mayo, but they wouldnā€™t take me in so I just have to hope someone here sees something soon as I am running out of hope. I hope you get your answers and the endocrinologist has some ideas for you. Good luck and please keep us posted!

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@stevetaylor721

Good luck to you and I hope you get your answers. Iā€™ve got some testing starting today that I hope will show something. A full abdominal CT scan. Iā€™ve continued to struggle each day and feel like I am getting further from recovery, not closer. The last few days Iā€™ve woken up with a ā€œbuzzingā€ sensation throughout my whole body, pounding head and then extreme jitters and nausea. Unfortunately this has not gone away at all. It may get more subtle during the day, and I have periods where I feel relatively better, but it comes back to really whack me. I am absolutely worn out physically and mentally, havenā€™t been able to go back to work for more than a couple of hours at a time, and am very concerned about providing for my family as leave and money are running out- so I hope for an answer soon! Iā€™m not sure the local doctors I have seen have the resources or experience to figure out what is going on with me, but I know my primary is trying. It is just a very complicated case and I do understand that as I was an active and healthy 48 year old until 8 weeks ago. The endocrinologist I saw told me the local docs would be unlikely to have much luck and tried to get me into Mayo, but they wouldnā€™t take me in so I just have to hope someone here sees something soon as I am running out of hope. I hope you get your answers and the endocrinologist has some ideas for you. Good luck and please keep us posted!

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I am so sorry you are having to endure this. The frustration and fear must be overwhelming. Has any doctor offered medication for your nerves yet? You are only 48 and I am 80 so I figure what difference for me but you have many years of living to do. The emergency room nurse told me to keep being the squeaky wheel. We have unusual symptoms and this confuses many doctors. Keep in touch.

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@gmerrill80

I am so sorry you are having to endure this. The frustration and fear must be overwhelming. Has any doctor offered medication for your nerves yet? You are only 48 and I am 80 so I figure what difference for me but you have many years of living to do. The emergency room nurse told me to keep being the squeaky wheel. We have unusual symptoms and this confuses many doctors. Keep in touch.

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Thank you so much for the thoughts and I too hope you get your answers soon! I was prescribed Xanax but unfortunately it made all of my symptoms worse. Since my heart rate either stays the same or actually goes down during the worst of the attacks, it doesnā€™t appear to be anxiety so it makes some sense the Xanax wouldnā€™t help. I donā€™t react well to most medications and never request anything, but am going to ask for an antidepressant to see if that can help some. I have some doubtsā€¦. My primary is also baffled. But Iā€™m lucky to have a wonderful wife who keeps pushing when I am ready to just give up, and sheā€™s kept putting pressure on the docs. It was a real gut punch when Mayo rejected our doctorā€™s referral as we had put so much hope in them getting to the bottom of this but maybe the local docs can find something soon and all will be well. Good luck and I hope you find your answers. I understand how incredibly difficult it can be to deal with a life altering illness without any answers or treatment on the horizon, but I truly hope they can get you going in the right direction and back to good health!

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Question......have you had a covid vaccine yet? Reason I am asking is because my problem started after taking the J&J vaccine back in March. Unbelievable that Mayo Clinic turned you down! What is a person to do...unless the times we are in effect all medical things.. Take care and keep on seeking answers.

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@stevetaylor721

Good luck to you and I hope you get your answers. Iā€™ve got some testing starting today that I hope will show something. A full abdominal CT scan. Iā€™ve continued to struggle each day and feel like I am getting further from recovery, not closer. The last few days Iā€™ve woken up with a ā€œbuzzingā€ sensation throughout my whole body, pounding head and then extreme jitters and nausea. Unfortunately this has not gone away at all. It may get more subtle during the day, and I have periods where I feel relatively better, but it comes back to really whack me. I am absolutely worn out physically and mentally, havenā€™t been able to go back to work for more than a couple of hours at a time, and am very concerned about providing for my family as leave and money are running out- so I hope for an answer soon! Iā€™m not sure the local doctors I have seen have the resources or experience to figure out what is going on with me, but I know my primary is trying. It is just a very complicated case and I do understand that as I was an active and healthy 48 year old until 8 weeks ago. The endocrinologist I saw told me the local docs would be unlikely to have much luck and tried to get me into Mayo, but they wouldnā€™t take me in so I just have to hope someone here sees something soon as I am running out of hope. I hope you get your answers and the endocrinologist has some ideas for you. Good luck and please keep us posted!

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Have they see if you have Hashimoto's i have that sensation of like inner tremors and don't go away i think is the antibodies in my brain, horrible plus my T3 from my thyroid is really below the normal range. Hope you find what it is i have been since 2013 trying like nine endocrinologist and no one is good, you should find a functional doctor,

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I have a similar story. I am desperately looking for answers.
Kevin Peacock 310 503 9726

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I wake up with heavy adrenaline/cortisol everyday around 4:00 AM. My chest tightens up, my body feels tight fear, doomed & low energy . It takes a while to get out of my system.
Please Help

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@libjen

Just an update: I have started taking a small dose of Cytomel (half of a 5mcg tab) and reduced my Synthroid to 100mcg, and this has stopped the adrenaline rushes at 3am...for now. Going to continue to monitor things, hopefully with a new family doc and I have an appt to see an Endocrinologist in October (a six month wait here in Canada).

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Have to ask you if finding a dr. to prescribe Cytomel has been an issue. My endocrinologist and 2 GP's said "No" to cytomel despite my reverse T3 being high (showing that the T4 generated through use of T4 is not undergoing conversion) or T3 is not being accepted into cells). Explanation was that the Endocrinology board only recommends dr.'s use Synthroid.

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