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.

@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

REPLY
@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

Thanks for your comments. I did want to reply though and say that we are our own best health advocate. We know our bodies the best. For those of us who have had weird things going on in our bodies for years — we have learned to take lots of notes and keep health journals. I am SO VERY THANKFUL that I have a physician who is not intimidated by a knowledgeable patient. Several years ago I suffered a really strange rash. I was concerned that it was leukocytoclastic vasculitis. My physician (family practice) upon seeing it was puzzled and called in the Internal Medicine doc to consult with. Near the end of the visit, I hesitantly and haltingly asked if she would consider whether it was the above-mentioned problem. She promptly responded with – "that is what I'm wondering about". Yay — my research was accurate and she and I were on the same page. Pity the doctor who can't take a suggestion from a patient. I know it has to be approached carefully. Yet if you have a rather atypical set of symptoms or not the run of the mill kind of a problem —- it is quite likely that your family practice physician may not know what the problem is. Last month I was diagnosed (a collaborative effort between my physician and myself) with Ehlers-Danlos, hypermobile type (hEDS). She told me that she doesn't have time to be an ESD specialist but said "I will continue to learn through you". I so appreciate her willingness to learn and not have to be controlling or either threatened in any way.

REPLY

Hi @jigglejaws94, I am, like Gail, a volunteer mentor and I can find truth in what you both say. I see a number of specialists and they are not all completely "read up" on things that I have first hand knowledge of and not a result of web surfing. I have also had some who were absolutely not interested in what I just read in the Merck manual. I will also make a point that one of my doctors actually told me once while we were doing a volunteer project at church. For every Dr. who finished first in his class and was editor of the medical journal, there was one who finished last and could barely understand the medical journal. He also told me that as long as you can come up with the $50k/year, you will not "flunk" out of medical school. Makes their acceptance process look bad and you are a great source of revenue. So, for all that is worth, I guess I will continue to research and also listen to my doctor unless she/he makes it obvious that they were last in their class.
Best wishes, Gary

REPLY
@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

@jigglejaws94

Thanks for your feedback. You are right about us being our own best health advocate. I'm not saying we should stop understanding our bodies, how we are feeling and understanding possible causes based on our symptoms. I am saying we need to be sure to talk about our symptoms, not our self diagnosis with the doctor first. You have a good way to approach your open minded physician. I will always encourage self knowledge of both our physical geographies, as well as our emotional landscapes.

I wish all doctors were as open and secure as yours, but unfortunately they aren't all that way. A number of MC members have discussed having problems with their physicians when they offer their research. I am suggesting a potential reason and hopefully something that will help them approach their own doctors differently, without discounting their research. The most important thing is to get to the root cause of the problem and then determine the appropriate treatment or cure to resolve the problem. I think we can do that by collaborating with our physicians, letting them take the lead until trust is established on both the patient and the doctor's parts.

Warm regards,
Gail
Volunteer Mentor

REPLY
@gman007

Hi @jigglejaws94, I am, like Gail, a volunteer mentor and I can find truth in what you both say. I see a number of specialists and they are not all completely "read up" on things that I have first hand knowledge of and not a result of web surfing. I have also had some who were absolutely not interested in what I just read in the Merck manual. I will also make a point that one of my doctors actually told me once while we were doing a volunteer project at church. For every Dr. who finished first in his class and was editor of the medical journal, there was one who finished last and could barely understand the medical journal. He also told me that as long as you can come up with the $50k/year, you will not "flunk" out of medical school. Makes their acceptance process look bad and you are a great source of revenue. So, for all that is worth, I guess I will continue to research and also listen to my doctor unless she/he makes it obvious that they were last in their class.
Best wishes, Gary

Jump to this post

@gman007

LOL, your story is so true. Sometimes it's hard to tell if a doctor is mediocre or last in their class. I can usually tell who is first or close to that. A surgeon once told me that all surgeons are taught in medical school that they are/must be infallible, therefore they are always right. He was explaining how the idea of being part of a collaborative medical team is almost impossible due to their training not to listen to others input. However, I think medical schools are beginning to change their tactics due to patient pressure. That's why the seminar I was in with the surgeons and Human Resource folks was being held a few years ago.

Gail
Volunteer Mentor

REPLY

Good thoughts, mentors and folks. Thank you for the exchange. It is a balancing act between respecting your doctor, understanding and knowing your own body, legitimate research of your own and communication.

REPLY

Well said, @jigglejaws94

Teresa

REPLY
@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

Hello @jigglejaws94,

As a Connect moderator, I always appreciate how relatable and insightful your messages are – I know that many on Connect can identify their experiences with those you describe.
I'm sorry to learn about your diagnosis, and thought you might like to read Shani Weber's Hypermobile Ehlers-Danlos Syndrome (hEDS) story, "Redefining My Life’s Purpose…in a Recliner." The article was just published in our Experts by Experience blog. https://socialmedia.mayoclinic.org/2018/05/18/redefining-my-lifes-purposein-a-recliner-experts-by-experience/

REPLY
@gman007

Hi @jigglejaws94, I am, like Gail, a volunteer mentor and I can find truth in what you both say. I see a number of specialists and they are not all completely "read up" on things that I have first hand knowledge of and not a result of web surfing. I have also had some who were absolutely not interested in what I just read in the Merck manual. I will also make a point that one of my doctors actually told me once while we were doing a volunteer project at church. For every Dr. who finished first in his class and was editor of the medical journal, there was one who finished last and could barely understand the medical journal. He also told me that as long as you can come up with the $50k/year, you will not "flunk" out of medical school. Makes their acceptance process look bad and you are a great source of revenue. So, for all that is worth, I guess I will continue to research and also listen to my doctor unless she/he makes it obvious that they were last in their class.
Best wishes, Gary

Jump to this post

@gailb,Gail, I think the success of forming a team to cover all of a patients needs as is done at many of the best hospitals will cause the "lone wolf" mentality taught in med school to gradually fade away. Although, I assume that, in a cancer case for example, the nutritionist is not telling the surgeon how to do his job and she is not telling the oncologist how to do their job, etc… I think I am rambling, so I am gonna logout! HA!

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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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@jigglejaws94 Thanks for the compliment! I've gotten good at this because of seeing so many doctors – I always write and print out a summary for them, including my questions. Of course, it's rare that any of them actually look at it before seeing me. :-/ As for Mast cell activation disease…no, I haven't considered it. After doing some reading, I realize this is, most likely, not my problem. But I appreciate your help.

REPLY
@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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@gailb Thank you for your thoughtful reply. I should specify that I am very aware of the often fragile egos of doctors (and they have a right to that ego after their long training) so I am very careful to be humble when I speak with them. I always preface my comments with "I could be wrong, but…" or "I'm sure you know more about this than I do…". The problem is precisely what others here have said – we often are very well educated about a specific topic simply because we have the time and also the motivation since it is we who are suffering. I was the one who originally diagnosed my Hypothyroidism since the doctor did not have a clue what was causing my symptoms. I suggested a TSH test, she reluctantly wrote one, and bingo! I also diagnosed my husband's Pulmonary Embolism a few years ago when the ER doctors were about to treat him for a heart attack. I begged for a CT scan of his lungs and bingo! I diagnosed my son's skin problem, my brother's Celiac Disease (years ago, before it was common), my mother's DVT (doctor originally sent her home with the instructions to just take Tylenol), my aunt's low vitamin D, and a couple of my friends' medical problems. I've gotten the reputation as the "go to" person for health problems but I honestly do not enjoy it. It's depressing and very time consuming, but I don't know how to tell people I don't have the time to help them.

I had the same doctor for almost 30 years, but she retired, causing me to have to find a new one. She would always listen to me patiently and was grateful for my knowledge. Speaking with her was like speaking with a trusted friend, and her ego was there, but well controlled. Since losing her, I've only been able to find one other doctor with her wonderful combination of self-confidence and humility. He is currently my primary care doctor, but, because he's part of a big doctors' group with all kinds of restrictions and rules, he is very limited in what he can do for me beyond writing referrals, and most of his referrals were doctors he didn't even know.

I agree with those here who say that collaborative medicine – like at Mayo Clinic – is the medicine of the future (together with Functional and Complementary Medicine). No one should have to put the ego of their doctor above their own self-knowledge and their own needs. With the internet and access to excellent information, it's a whole new world out there, so I hope the current crop of young doctors making their way through medical school are taught to respect their patients, especially those who are truly knowledgeable. Reading a health article in a magazine or online is very different from reading (and understanding) multiple studies done on a particular topic (I have access to more than are online), and once a doctor can clearly see that you're an educated, well-read patient, the relationship should instantly change from one of authority figure to subordinate to one of simply two smart people mutually trying to figure out a complex problem.

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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

Jump to this post

One more thing, @gailb …thanks for letting me know of your experience with Nystatin. I'm reluctant to try it because the doctor won't order tests to prove I have the overgrowth (even though I know they're not conclusive) and because he spent such a short time talking with me. I'm afraid the treatment may put more stress on my already overly taxed HPA system. If that happens, my cortisol may rise and everything may get worse. Even so, I haven't ruled it out completely yet and I appreciate you telling me it worked for you. As for my Synthroid dose, I have experimented with taking a lower dose (which made my TSH closer to 2.0) and that made no difference in my symptoms except to make my afternoon crashes worse. 🙁

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@gman007

Hi @jigglejaws94, I am, like Gail, a volunteer mentor and I can find truth in what you both say. I see a number of specialists and they are not all completely "read up" on things that I have first hand knowledge of and not a result of web surfing. I have also had some who were absolutely not interested in what I just read in the Merck manual. I will also make a point that one of my doctors actually told me once while we were doing a volunteer project at church. For every Dr. who finished first in his class and was editor of the medical journal, there was one who finished last and could barely understand the medical journal. He also told me that as long as you can come up with the $50k/year, you will not "flunk" out of medical school. Makes their acceptance process look bad and you are a great source of revenue. So, for all that is worth, I guess I will continue to research and also listen to my doctor unless she/he makes it obvious that they were last in their class.
Best wishes, Gary

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@jigglejaws94 LOL! I have two doctor friends and they both told me NOT to tell my doctor that I have doctor friends because they will instantly be on guard and think you are checking every diagnosis and script with your friends. I have listened to their advice. 🙂

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@gman007

Hi @jigglejaws94, I am, like Gail, a volunteer mentor and I can find truth in what you both say. I see a number of specialists and they are not all completely "read up" on things that I have first hand knowledge of and not a result of web surfing. I have also had some who were absolutely not interested in what I just read in the Merck manual. I will also make a point that one of my doctors actually told me once while we were doing a volunteer project at church. For every Dr. who finished first in his class and was editor of the medical journal, there was one who finished last and could barely understand the medical journal. He also told me that as long as you can come up with the $50k/year, you will not "flunk" out of medical school. Makes their acceptance process look bad and you are a great source of revenue. So, for all that is worth, I guess I will continue to research and also listen to my doctor unless she/he makes it obvious that they were last in their class.
Best wishes, Gary

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@jigglejaws94 Interesting. The husband of the couple we are closest friends with is a doctor (ob/gyn) and I never mentioned that to my PCP but one time my husband came with me and he did! I felt like it was trying to garner extra attention or something so I didn't want it mentioned. Since his specialty is much different from that of a PCP though I doubt that my PCP would feel like I was checking with him, and I really do not.

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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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Hi !!! Was just searching adrenaline rushes and came to your original post…. u sound exactly like me . I’m on synthroid pre menopause adrenaline rushes in am can’t stand them…… can’t do much only one thing per day . Low normal t3 middle t4 high normal reverse . So I’m sure that’s a problem as u know. I have histamine issues as well I do have some things I can share with u. I was wondering if u can chat sometime. Would love to know how u r doing? I’m miserable house bound for the most part! This all started with lowering thyroid meds ugh I did take t3 as well with my t4!! Not working now big mess!! Maybe we can figure this out 🙏😩lmk I can give u my email phone number ….

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