Med detective needed, award given - adrenaline spikes

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.

@lilsprite

I had complete relief of adrenaline rushes with a small dose of the beta blocker, Atenolol, before bed.

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Hi, @lilsprite – welcome to Mayo Clinic Connect. Thanks for sharing your experience with a medication, atenolol, that helped your adrenaline rushes. What were these rushes like for you before?

Liked by lioness

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@lilsprite @lisalucier – I read through conversations from last year on same subject- adrenaline rushes.
My daughter was diagnosed with Cushing’s disease after a long time of similar complaints and many other symptoms. She had persistent tachycardia and saw a cardiologist who prescribed a beta blocker which helped. But to me that is wrong! She was in her early 20s then. There has to be a reason for this. Finally she was tested and found to have a small pituitary tumor that stimulated cortisol production. Not all doctors- including endocrinologists- think to test for more rare illnesses. Also, the testing has to be done right and maybe repeated with time. MRIs for these tumors are very specific- not necessarily seen on regular brain MRI. She was lucky to be referred to a major university hospital. Sorry for this rambling, but I just wanted to share our experience with similar symptoms!

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@sierrawoods

Thank you, everyone, for your input. I apologize for taking so long to respond. My mother is having some potentially serious health problems and my life, the last few months, has pretty much been taking care of her doctor appointments, moving her to a new senior apartment, caring for her, etc. I'm still having the excess adrenaline in the mornings but have been using a new hack that's probably not good long term, but I'm desperate: I've been taking 1/2 tablet of Benadryl during the night when I use the bathroom. It's a tiny amount and it helps me to fall back asleep when I wake too early. Basically, it turns the adrenaline "rush" into a slower adrenaline "stream" that gets delayed maybe an hour. I got this tip from another message board that explained how histamine can cause excess adrenaline. Next, I'm going to try L-Theanine and then, if that doesn't work, I'll try Phosphatidylserine. The afternoon crashes are still there, but have become less frequent and less severe and I'm not sure why. The only change I've made is adding coconut oil to my breakfast (about 1 teaspoon each day), but that could be a coincidence. I still have horrible exercise intolerance and crash if I do more than one physical task each day (shopping, cooking a meal, cleaning a room, etc.).

My TSH is very low/normal, my Free T4 is high/normal, my Free T3 is low/normal, and my Reverse T3 is high/normal. My serum A.M. Cortisol is very high/normal. The very low/normal TSH suggests that I should reduce my Synthroid dose, but I'm afraid that if I do that, my low/normal Free T3 will drop to below normal and I'll feel worse in the afternoons. My high A.M. Cortisol could be causing my high/normal Reverse T3, which binds to the T3 receptors, blocking T3. It makes sense to me that if I can get my very high/normal A.M. Cortisol down to mid-normal, my Reverse T3 should come down and my Free T3 should go up. That's my plan for now for the morning adrenaline rushes. I'm hoping that this will also help with the exercise intolerance because I think it's the low/normal T3 that is causing my muscles to weaken so quickly. I hope it's this simple because I don't have any other explanations.

Note: I went to an ENT to see if he could enlighten me but all he did was prescribe Nystatin for possible intestinal yeast overgrowth. He thinks my problem is unrelated to my thyroid and is being caused by the overgrowth. I may or may not do as he suggests. I only have one risk factor for this – being on oral contraceptives which sightly increases your odds. I do not eat or crave sugar/sweets and I do not have excess intestinal gas. He doesn't want to actually test me first before prescribing this drug, so I'm reluctant. Any thoughts, people?

After tackling this adrenaline and crash problem, I think I'm going to look into these boards for another problem that has me baffled – high triglycerides and high cholesterol despite an excellent diet. I know thyroid problems are associated with high lipids, but there has to be something else contributing to it and the high lipids were still there when I was exercising 6 days a week. Oh well, that's for another time.

Here are my responses to your individual questions:

@jigglejaws94 – I have considered autonomic dysfunction and am currently trying to balance it out by pampering my parasympathetic nervous system. I've been meditation, having my husband massage my back, using aromatherapy, listening to relaxing music, etc. It hasn't helped much yet, I think, but they're good practices anyway, so I'll continue. As for the pheochromocytoma, I have mentioned it to at least three doctors and none of them think it's possible. They will not order any tests. Very frustrating. As for the paraganglioma, the doctor explains that I would be having the adrenaline rushes all the time and with no regular pattern. The fact that I'm currently only having them in the early morning suggest it is not paraganglioma (or pheochromocytoma).

@gman007 – I'm sorry about your panic attacks. That must be horrible. The only physical symptoms I have beyond the strong adrenaline feelings are sometimes a pounding heart (not fast), and maybe some body warmth – almost like a hot flash but not as severe. I've considered that the adrenaline rushes are related to menopause but I doubt it because I don't have the adrenaline during the day while I do have occasional, mild hot flashes. Also, I doubt menopause would cause my afternoon crashes, especially since they've been going on for the last ten years, including way before menopause (I'm still not officially menopausal).

@lisalucier – You asked, "Does the timing when the adrenaline rushes started seem to correlate with any medications you started or other significant happening?" There is only one thing: Back in 2008, I had an anovulatory month (no ovulation) and then a weird period, two weeks late, that started, stopped, and then started again with very heavy bleeding. I know this had something to do with fluctuations in my estrogen, progesterone, etc. That's when I had my first crash, and they were awful back then, keeping my couch-bound for days. That's why my doctor put me on birth control pills. But the crashes continued, and even got more frequent, even though the pill was supposed to stabilize my hormones. The morning adrenaline rushes started two years later, in 2010, without any change in medicines or activities. By 2008, when this all started, I had already been on Synthroid for 12 years and Amitriptyline for maybe 10 years. No new meds since then.

@johnbishop – Thanks for the tip! When using Google, I usually start with "Scholarly articles: " and then I add my search terms. Your way is better, so I'll create a bookmark to use https://scholar.google.com/ from now on. 🙂

@kdubois – I have heard of this problem and have considered that I might have it, but I never pursued the idea. Thanks! I'm going to look into testing for it for sure. Wish me luck getting my doctor to say it is medically necessary so insurance pays for it…it's expensive.

Thanks again, everyone. All my best to you.

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@sierrawoods Hello! You sound exactly like I did a few years ago. So many of the same symptoms. Please, please, please try a product called ReMag. I read a book by Dr. Carolyn Dean called the Magnesium Miracle and it has saved my life. There are some other products I have used well to heal myself. Seriphos reverses the dysfunction in the fight or flight (adrenaline) response and was a HUGE help in my healing as well. You can reverse this nightmare….I promise you!

Liked by lioness, jenniferg27

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@sierrawoods @michelle00410 @lisalucier @lilsprite @juliebug @jigglejaws94 and others
My last comment was around Thanksgiving. I have re- read most personal stories and it strikes me that everyone has seen doctors without getting diagnosed and treated properly-as well as self treating for symptom relief. Also- one of our members had some small nodule on MRI of pituitary and was told not to worry about it. To me all this sounds so wrong!!! Obviously, something is abnormal and somehow everyone communicating about this needs to see a knowledgeable endocrinologist at a major teaching hospital, such as Mayo Clinic. How can we accomplish this?

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@astaingegerdm

@sierrawoods @michelle00410 @lisalucier @lilsprite @juliebug @jigglejaws94 and others
My last comment was around Thanksgiving. I have re- read most personal stories and it strikes me that everyone has seen doctors without getting diagnosed and treated properly-as well as self treating for symptom relief. Also- one of our members had some small nodule on MRI of pituitary and was told not to worry about it. To me all this sounds so wrong!!! Obviously, something is abnormal and somehow everyone communicating about this needs to see a knowledgeable endocrinologist at a major teaching hospital, such as Mayo Clinic. How can we accomplish this?

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@astaingegerdm I agree. The only local doctor I now see is my PCP, simply because MGH is a bit far to go for a PCP. He knows if I need to see a specialist that I will not be going to one he refers me to. They tend to know much more at major medical centers, perhaps simply because they see so much more. Also, of course, those hospitals always get the "cream of the crop" doctors. That is not to say that no local doctors are any good but I do find they simply have not generally been as there for me as I needed.
I knew a woman up here who had a lump in her breast when she was in her late 30s. Her doctor said not to worry since she was so young! Her friends convinced her to seek another opinion. It did turn out to be breast cancer. That to me is simply unforgivable.
JK

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I had this for months. Then it went away.

Then I had surgery December 26th and it came back. Every single morning like clockwork. Between 5am and 6am I wake up pounding heart rate and a very unusual feeling all over my body. My heart rate would be in the 160s.

I started taking Benadryl but it caused a reboynd affect and increased my heart rate once it wore off.

Now I take zyrtec. I still wake up in the morning feeling very weird. My heart rate pounds hard but nowhere near as fast.

I got a new doctor and told him about all of my stuff that started in 2018. He went back over my records. Showed my kidneys are wasting potassium:(
Have you had low potassium at all?

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@bumble81

I had this for months. Then it went away.

Then I had surgery December 26th and it came back. Every single morning like clockwork. Between 5am and 6am I wake up pounding heart rate and a very unusual feeling all over my body. My heart rate would be in the 160s.

I started taking Benadryl but it caused a reboynd affect and increased my heart rate once it wore off.

Now I take zyrtec. I still wake up in the morning feeling very weird. My heart rate pounds hard but nowhere near as fast.

I got a new doctor and told him about all of my stuff that started in 2018. He went back over my records. Showed my kidneys are wasting potassium:(
Have you had low potassium at all?

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@bumble81 – Did you ever have a cardiac monitor for 24-72 hrs? Or regular EKG? It sounds like a cardiac arrhythmia- it feels very unpleasant. Is it possible for you to see a cardiologist?

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I had a reaction to two medications that gave me a movement disorder. Doctors tested for everything. Thought I was faking it. After 2 1/2 years of battling it I went to an acupuncturist. I went twice a week for 3 weeks and once a week for an additional 3 months. Anxiety made it so much worse. He got it to a point that I can manage. It's always with me every morning. Once in awhile it will really kick in for a couple of days and then quit. This helped me sooooo much. However, I really think you need to have an MRI and check to see if your pituitary gland is OK. My daughter suffered from Graves Disease and had many of those symptoms..even mental. She had her Thyroid killed and is on Synthroid but still suffers from a lot of emotional stress. She had a bought of Tacachardia (sp) and had to have an Ablasion. It also triggered Vitaligo and she has lost about 2/3 of her skin pigment. It's funny I have both hyper and hypo Thyroid problems on my mother's side of the family. Seems weird. Find a good Acupuncturist and have them help while you are looking for other answers. They may even know where you should begin.

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Thyroid or adrenal storm

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Has anyone ever thought of That? Just trying to be helpful

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@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.

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@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.

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@sierrawoods

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.

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@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

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@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

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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

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