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May 24, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

@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. 🙂

May 24, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

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. 🙁

May 24, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

@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.

May 24, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

@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.

May 17, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

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 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.

Feb 20, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

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.

Feb 20, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

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.