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.

jenniferg27 | @jenniferg27 | Apr 4, 2020

@sierrawoods This is exactly what has been happening to me since Jan 2018. This is ruining my life. It’s nice to know I’m not alone but I’m so sorry for both of us. theres no way I can live with this forever. So many ER visits and so many doctors but no answers.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 4, 2020

@jenniferg27 - you are definitely not alone feeling like this. Do you have a regular Internist? ER doctors can not spend much time researching your problem once it is determined that your life is not in danger. Internist and/or Endocrinologist would be a good start I think.

syb | @syb | Apr 12, 2020

In reply to @sierrawoods "I will add this: If I get a solution to this problem, I will be so..." + (show)

@sierrawoods, Hi, what medication and supplements are you taking and how are you taking them? Are you spacing your vitamins and supplements at leadt 4 hrs away from you thyroid medication?
Which type if herbal tea are you drinking? What ingredients? That is something that i did in the past
I have Addison’s disease and hypoparathyroidism, hypoparathyroid and Lupus. I had a year where immy circadian rythym was a mess and most nights i was wide awake and exhausted all day. I only had 1 or 2 instances where i had severe adrenaline rushes and i was terrified.
I hope that i can help
Sybil

syb | @syb | Apr 12, 2020

In reply to @gailb "@sierrawoods Hello @sierrawoods, I am a Volunteer Mentor with Mayo Connect, and as such I am..." + (show)

@gailb

@sierrawoods

Hello @sierrawoods, I am a Volunteer Mentor with Mayo Connect, and as such I am not able to make medical diagnosis or medical solutions to problems. I have read through all the posts here, and I'm impressed with your research acumen. My one caution is that through our own research we may not take our doctor's advice or recommendations because we doubt what they're saying due to what we've read. I have done this myself in the past, but when actually following the doctor's orders, my problem has been resolved despite my doubts due to my research. I have had to apologize to my PCP for second guessing his diagnosis. After that point, I trusted his recommendations. I still give my "hunches" about what may be going on, but I try just to give my symptoms now.

I also think sometimes when we talk with doctors about what we think our medical diagnosis is, using medical terminology, they discount us and our problems. Doctors are human; they know they have spent 10++ years learning their profession/speciality, and they don't like it when we present our research to them. That may not be what we want and may not be the right thing to do, but they may feel insulted by our conclusions. Doctors are trained to diagnose by ruling out various possible problems before they make a diagnosis. That means they may try conservative medications/solutions first to see if the problem resolves before they decide on more advanced methods of diagnosis. This may be why your doctor won't order an MRI based on your own research. I'm not trying to discount your research, but I'm trying to put myself in the doctor's shoes to understand why they may not be taking you seriously. I worked in hospitals for 8 years as the HR executive and I have heard physicians and nurses talk about "frequent flyers" meaning hypochondriacs. It's not nice, and I stopped them from the use of that term at the time, but they do have their own way of letting each other know if the patient is not credible in their opinion. My brother was an ER patient I overheard the nurses refer to as a "frequent flyer". They finally found the source of his many years of pain and he had emergency back surgery. There was a reason he was a "frequent flyer".

My recommendation is that you take your doctor's advice about the Nystatin,( which I have taken and it did resolve my problem at the time) and let him/her know if anything changes in your condition. The doctor will then probably recommend other tests to rule out additional problems. It sounds as if you have already been through many tests, so this process may be frustrating for you. I can relate to that frustration. I also take medication for my thyroid, and I was at one time taking too much. I was having the symptoms you are having and it took awhile to figure out what the problem was. As soon as my dose was lowered by almost half, I was fine. Too much Synthroid or Levothyroxin can cause bone thinning, which you don't want.

You said that your symptoms started about 10 years ago, along with your peri-menopause symptoms. It is probable that you are in menopause now, and have been cycling there for the past 10 years. You may want to think about and discuss with your gynecologist, stopping the birth control pills. I assume you don't smoke cigarettes. I liked @kdubois suggestion of getting tested for a buildup of medications due to your metabolism.

You are very thorough in taking care of yourself and I admire that quality. I hope you find some help here for determining a direction to go. I also want you to know that I support your search for resolution of your issues. We are here to listen to your feelings around the last 10 years of suffering through the process as well.

Warm regards,
Gail
Volunteer Mentor

Jump to this post

Gail,
Wonderful advice and well put! I have been very ill for 18 yrs. I am have have always done thorough medical research when it became available via internet.
My Husband said exactly the same things that you suggested, but if course why would I rake his advice.

After many years of tears and frustration I came to that same realization. I still do extensive research, but I am have learned to listen to my Doctors and specialists with respect and only then will i ask questions. My youngest daughter is unfortunately having unexplainable health problems and will mot take my advice and let her Physician take the lead. Its a learning curve that comes with a great cost.

Warm regards,

@sybs_life

b808 | @b808 | Dec 16, 2020

Aloha,
I have been dealing with the exact same thing for a full year now. Been in to see a heart doctor, full blood work, including thyroid functions, prolactin and DUTCH dried urine tests for hormones. Every doctor shrugs their shoulders or pushes anxiety meds (this is not anxiety) it’s very frustrating. Has anyone been able to get any further information on this? I’m going to look into pheochromocytoma. I have been doing endless research on how our hormones function, and how the HPA Axis, pituitary gland, thyroid and adrenal glands all work together. I refuse to stop advocating for myself until we have answers. This forum is old I’m aware but if anyone found answers, please reach out. I feel for anyone who is going through this as well, it’s put a stop on my life and I just want it back.

libjen | @libjen | Dec 17, 2020

In reply to @b808 "Aloha, I have been dealing with the exact same thing for a full year now. Been..." + (show)

Hello b808!
I have been able to find a balance between my thyroid medications (Synthroid and Cytomel) and HRT (estrogen and progesterone...both synthetic and bioidentical) that seems to work to keep my “nighttime adrenal rushes” under control. I completely agree with you that it is a hormonal issue. I can even affect mine nighttime “rushes” by the foods I choose to eat in the evening (pasta actually helps me sleep through the night). I hope you are able to do more research, and update us again, if you discover anything interesting. Best of luck to you 🙂

Erika | @erikas | Dec 17, 2020

In reply to @b808 "Aloha, I have been dealing with the exact same thing for a full year now. Been..." + (show)

@b808 Welcome to Mayo Clinic Connect. You feel your providers are wrongly diagnosing you with anxiety but you refuse to stop advocating for yourself. .

You said, "I have been dealing with the exact same thing for a full year now," and I understand it's related to your adrenal glands. Would you tell me a bit more about your symptoms or anything else that is relevant?

Members like @catcr505 @becsbuddy @gingerw @dorisena @ess77 @beanie300 @robjohn @robjohn have recently discussed topics in the Diabetes/Endocrine System groups and may be of help and/or support for you.

Below I have linked previous discussions I think may be of interest to you. I suggest scrolling through the previous posts to see posted discussions.
- Possible Adrenal Issues https://connect.mayoclinic.org/discussion/possible-adrenal-issues/
- Pheochromocytoma & Paraganglioma https://connect.mayoclinic.org/discussion/pheochromocytoma-paraganglioma/
- Possible NET with No Evidence of Tumor: Mediastinal Mass https://connect.mayoclinic.org/discussion/possible-net-with-no-evidence-of-tumor/
- Hope with Hashimoto's https://connect.mayoclinic.org/discussion/hashimotos/

May I ask if you have seen an endocrinologist? If you have are you able to travel for more specialized care?

Kathy84 | @adamek3638 | Dec 18, 2020

Sounds like adrenal fatigue. Cortisol elevated at night

b808 | @b808 | Dec 18, 2020

In reply to @libjen "Hello b808! I have been able to find a balance between my thyroid medications (Synthroid and..." + (show)

Mahalo for your support and feedback. I’m glad to hear that your doing a little better. I have changed my diet to more of a paleo style, I’ve been doing a lot of self care as well as exercising to try and eliminate it while we wait for answers, although all I can do is walk as jogging or running leaves me short of breathe. We thought it may have been perimenopause as my mother and my aunt both started early 30’s. I’m 34 and currently on a BiEst cream 80/20 to try and bring up my estrogen level, I agree this all has to do with hormone imbalances and can be tricky. And I don’t believe perimenopause can cause adrenaline rushes 24/7 all day long. Since we have looked into pitiuary gland, thyroid and adrenal gland we are going to do a urine mold test to see if I’ve been around mold exposure. I have not seen an endocrinologist as of yet do to flying restrictions and quarantine, the only endo we have is on another island that I would need to fly to and from. That will be my next step if the mold exposure comes back negative. My doctor is not able to explain to me why my DHEA-S is double the normal high range, or why my estrogen is in a menopause state, (my OB says my estrogen color is normal and no signs of perimenopause) or why my cortisol spikes in the morning super high then crashes but does the opposite the next day.. I will update next month with my mold/urine test for everyone.

Mahalo and have a blessed day!

Erika | @erikas | Dec 29, 2020

@b808 We look forward to the update. Take care.

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