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Adrenaline spikes: Med detective needed, award given
Diabetes & Endocrine System | Last Active: Aug 7 8:28pm | Replies (211)Comment receiving replies
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
Replies to "@sierrawoods Hello @sierrawoods, I am a Volunteer Mentor with Mayo Connect, and as such I am..."
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
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/
@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.
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. 🙁
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
Connect
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.