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.

@contentandwell I think you and @libjen are posting about 2 different meds. You are posting about Omeprazole. @libjen and @sierrawoods are posting about Synthroid.

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@cehunt57

@contentandwell I think you and @libjen are posting about 2 different meds. You are posting about Omeprazole. @libjen and @sierrawoods are posting about Synthroid.

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@cehunt57 Oops, you are right. I will correct that post to say levothyroxine.
JK

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@contentandwell

@libjen I am not having a problem with my levothyroxine, but it's good to know that if necessary it can be taken in the evening. It doesn't interfere with your sleep?
JK

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No, it actually helps me sleep through the night as it seems to control the kind of adrenaline hot flashes that @sierrawoods originally posted about. I checked with my pharmacist, and she said it can be taken at night. I just need to make sure it is at least 2 hours after I’ve had anything to eat (so it prevents snacking in the evening too!) Luckily, I have the kind of work schedule that allows me to have an early dinner to accommodate taking my Synthroid on as empty a stomach as possible before I go to bed 🙂

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Hello, I have been searching for moths to figure out what is happening to me. And I found this post. I am experiencing the exact same thing. I couldn’t quite put an explanation to the sensations I get. It all began May 2018 for me when I had my right thyroid lobe removed. They did not put me on any thyroid meds as they say my thyroid tests read normal. Soon after June 2018 I began what I like to call a living nightmare of events. All day and all night I have these adrenaline surges similar to the feeling of looking over the top of a very high building. They scare the crap out of me. They happen all day, and all night. I hardly sleep as they are so strong they wake me up and I have trouble falling asleep as they happen around every 18-25 seconds non stop. Along with this I also began having major heart palpitations which have been diagnosed as SVT. I have had spells of extreme light headed and I have also fainted. All which my dr kept telling me was anxiety. I am not having anxiety. It’s upsetting me. I have gained 25 pounds (I’ve never weighed over 120 in my life. I am 39 years old, not in pre menopause (I have a 2 year old) I am extremely tired all the time. I used to be extremely active, now I am basically house bound. The easiest tasks drain me. I am so frustrated and when I explained to drs what is happening they shrug it off like nothing is wrong. I can’t live like this much longer, and am so desperate for answers. I can no longer drive due to the occasional fainting. Please if you have any further information please share.,I’ll be following your post. Good luck to you as well, I understand your nightmare.

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Hi @mittzyvon and welcome to Connect! It must be horrible dealing with these symptoms, and not getting any help from the physicians you go to.

I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 and @lmherman as they have experienced something similar or have experienced a mystery diagnosis and may be able to help and support you as you search for answers.

Back to you @mittzyvon have you been given any form of treatment at this time?

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@ethanmcconkey

Hi @mittzyvon and welcome to Connect! It must be horrible dealing with these symptoms, and not getting any help from the physicians you go to.

I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 and @lmherman as they have experienced something similar or have experienced a mystery diagnosis and may be able to help and support you as you search for answers.

Back to you @mittzyvon have you been given any form of treatment at this time?

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No I have been suffering from this for almost a year. Every Dr just shrugs it off or looks at me like I am crazy. I have a 2 year old (I am 39). I am so exhausted every day as this is causing me to get around 2-3 hours of sleep per night if I am lucky. I feel drained, also my bones hurt really bad, especially on my face, I have severe migraines that I didn’t have before also. I just want to feel better or have a dr listen.

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@mittzyvon

No I have been suffering from this for almost a year. Every Dr just shrugs it off or looks at me like I am crazy. I have a 2 year old (I am 39). I am so exhausted every day as this is causing me to get around 2-3 hours of sleep per night if I am lucky. I feel drained, also my bones hurt really bad, especially on my face, I have severe migraines that I didn’t have before also. I just want to feel better or have a dr listen.

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@mittzyvon Could you convince your doctor to put you on Thyroid meds? Taking my dose before bed instantly helps me…the relief is immediate…I can sleep through the night. The aches and pains go away as well…maybe it will work for you too!! (My TSH tests were in the normal range, but a higher dose of Synthroid takes away the symptoms).

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I have mentioned to my dr that this all started immediately after the removal of my right lobe, and I have every symptom of hypothyroidism. My hair was waist length and is now chin length, it’s falling out. I have gained weight, I am tired ect. I said maybe normal for others was not normal for me. I am going to see if I can speak to an endocrinologist maybe but it’s also by referral only. I will try again.

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@ethanmcconkey

Hi @mittzyvon and welcome to Connect! It must be horrible dealing with these symptoms, and not getting any help from the physicians you go to.

I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 and @lmherman as they have experienced something similar or have experienced a mystery diagnosis and may be able to help and support you as you search for answers.

Back to you @mittzyvon have you been given any form of treatment at this time?

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@ethanmcconkey @mittzyvon Yes, I too went too long without a diagnosis. When I look back at that I realize that could have been a huge problem. I was finally diagnosed with NASH cirrhosis. When they did an MRI it was discovered that I had malignant lesions in my liver. If you have too many or they are too large it disqualifies you as a transplant candidate. Fortunately, I was slightly under the limitation.

The symptoms I had initially were vague and as with you, somewhat shrugged off. Then I had a much more serious symptom, an episode of Hepatic Encephalopathy (HE), and that should have been a huge red flag but it was not. That was not shrugged but all of the wrong avenues were explored before a neurologist suggested that the problem was my liver.

What I know now is that if I go without a diagnosis for more than a couple of months I will get myself to a major medical center. In my case more than likely that would be Mass General, that is where my transplant took place. I live in southern NH so it's about 55 miles away, but it's worth it. The quality of the medical care surpasses what I can get locally by leaps and bounds.

I hope you find some doctor who can give you some answers. I know how difficult it is to not know what is causing problems. When I did finally get the diagnosis, despite it being potentially life threatening, it was a huge relief to finally know what was wrong with me. The PCP I had when I had my first HE episode suggested that I had Alzheimer's! She was quickly history when the neurologist and another doctor scoffed at that. Even so, the doctor I changed to was stumped.
JK

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@mittzyvon

I have mentioned to my dr that this all started immediately after the removal of my right lobe, and I have every symptom of hypothyroidism. My hair was waist length and is now chin length, it’s falling out. I have gained weight, I am tired ect. I said maybe normal for others was not normal for me. I am going to see if I can speak to an endocrinologist maybe but it’s also by referral only. I will try again.

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@mittzyvon I hope you can get that referral. I have read that sometimes the TSH test doesn't tell everything, that additional testing may be needed. Of course, I am not a medical person so I do not know if that is the case, but if it is, is the TSH test one being relied on?
From the little that I know it does sound like a thyroid problem. I hope to hear that you have been able to see an endocrinologist and that the problem has been diagnosed and is being treated.
JK

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@mittzyvon

No I have been suffering from this for almost a year. Every Dr just shrugs it off or looks at me like I am crazy. I have a 2 year old (I am 39). I am so exhausted every day as this is causing me to get around 2-3 hours of sleep per night if I am lucky. I feel drained, also my bones hurt really bad, especially on my face, I have severe migraines that I didn’t have before also. I just want to feel better or have a dr listen.

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@mittzyvon I am a little backed up in reading these posts, so I just now saw that you are having migraines too. I have never heard of them being connected to thyroid, although again, as I said in a prior post, I am not a medical person. Is that common? I was a migraine sufferer prior to menopause but at that point, I did not have any thyroid problem. Now I take a tiny dose of levothyroxine but being past menopause my migraines have disappeared.

You are young to be pre-menopausal but it's certainly not impossible for you to be. Pre-menopause can start well ahead of actual menopause. Have you spoken to your gynecologist about this? I know I had many symptoms when I was pre-menopausal but I can't remember what they were, unfortunately.
JK

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@contentandwell

@mittzyvon I am a little backed up in reading these posts, so I just now saw that you are having migraines too. I have never heard of them being connected to thyroid, although again, as I said in a prior post, I am not a medical person. Is that common? I was a migraine sufferer prior to menopause but at that point, I did not have any thyroid problem. Now I take a tiny dose of levothyroxine but being past menopause my migraines have disappeared.

You are young to be pre-menopausal but it's certainly not impossible for you to be. Pre-menopause can start well ahead of actual menopause. Have you spoken to your gynecologist about this? I know I had many symptoms when I was pre-menopausal but I can't remember what they were, unfortunately.
JK

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I just had all of that checked even though I do have a 2 year old child so pregnant not too long ago and everything is normal with my LH, FSH ect

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Hi – I relate to many of your symptoms and much of your journey. I have also had low thyroid, questionable hormonal imbalances (there seems to be a general lack of knowledge concerning estrogen/progesterone), 18yrs of unexplained infertility, metanephrines high but not high enough for pheochromocytomas, negative tilt table although flushing and heart rate elevated significantly, massive adrenaline surges during sleep, fatigue in day. An allergist placed me on h1&h2 histamine blockers – some symptoms decreased with this initially. I was given an unofficial diagnosis of mast cell activation disorder. I was bruising (hematology rule-out genetic clotting factors), had bone pain (rheumatologist ruled out arthritis) and very dizzy to the point of passing out. Randomly I had genetic work done which brought to my attention that I had genetic variants for Celiac Disease. After my aways sore gut got to the point of not being able to hold any food without it coming up or flushing out immediately I got a gastroenterologist consult. Two gastroenterologists suggest that I have Celiac and secondary lactose intolerance. Cutting out gluten and most dairy has nearly cleared my complaint lists (it has taken me 2-4months to clear out the damage from my gut). I am off of most every medication – yet, an adrenaline rush roared through me again a week ago at night. Not sure if this info helps. I would love to get more answers to this adrenalin problem as well. Let me know how you are doing. Best wishes!

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@fuzzleguz

Hi – I relate to many of your symptoms and much of your journey. I have also had low thyroid, questionable hormonal imbalances (there seems to be a general lack of knowledge concerning estrogen/progesterone), 18yrs of unexplained infertility, metanephrines high but not high enough for pheochromocytomas, negative tilt table although flushing and heart rate elevated significantly, massive adrenaline surges during sleep, fatigue in day. An allergist placed me on h1&h2 histamine blockers – some symptoms decreased with this initially. I was given an unofficial diagnosis of mast cell activation disorder. I was bruising (hematology rule-out genetic clotting factors), had bone pain (rheumatologist ruled out arthritis) and very dizzy to the point of passing out. Randomly I had genetic work done which brought to my attention that I had genetic variants for Celiac Disease. After my aways sore gut got to the point of not being able to hold any food without it coming up or flushing out immediately I got a gastroenterologist consult. Two gastroenterologists suggest that I have Celiac and secondary lactose intolerance. Cutting out gluten and most dairy has nearly cleared my complaint lists (it has taken me 2-4months to clear out the damage from my gut). I am off of most every medication – yet, an adrenaline rush roared through me again a week ago at night. Not sure if this info helps. I would love to get more answers to this adrenalin problem as well. Let me know how you are doing. Best wishes!

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I was tested for celiac and it’s negative. I did just mention to my Dr that my bones hurt, especially my skull and facial bones. As well my feet have gone from size 6 to 7.5 and he said he’s sending me for a bone scan. I suffered from infertility as well and did invitro to become pregnant (hence my 2 year old) and I am now 39. Mine was due to tubal pregnancies though and removal of both tubes years ago. I am so tired all the time. I can’t stand feeling this way, and sleeping in avergae 2-4 hours per night only. I wish we could all get some answers

Liked by fuzzleguz

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@gman007

@sierrawoods. You do a wonderful job of concisely and thoroughly cavering your topic; my wife would be so happy if I could learn to use sentences instead of paragraphs. I have to plead ignorance beyond everything you have discussed and tried. The only other simplistic thing that I would consider is, are you a coffee or tea drinker in the mornings? I consume coffee through the day, but if I had only two cups in the AM, I am certain I would crash in the afternoon, but I am sure you have considered that already. How about a "caffeine nap" around 1PM. A strong cup of caffeinated coffee and a 30 minute siesta and the caffeine will kick in after you wake. I have read that is a millennial life hack. Just a power nap with the addition of some caffeine.

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I know I am late for a reply to this but I hope you have found some sort of resolution by now considering this is a year later. When I read what you wrote I immediately had to reply. This will probably be my first and last response on here but I felt it was so important to give you this information that I actually signed up with an account just to write this! Basically, I am a 29 year old female and am otherwise healthy. When I was 25 I had the same adrenaline rushes while asleep and wondered what was happening and could not figure it out for the life of me; it was causing me anxiety not knowing. Many people thought it was panic attacks but I knew it wasn’t. I suffer from anxiety but the two are not the same. I was also completely calm when this occurred. Anyway, months after it started I was hospitalized and then diagnosed with SVT and monitored for several nights before being released. I was then referred to a cardiologist at Mass General Hospital, and I, to this day am prescribed (extended release) metoprolol 50mg daily, and those awful symptoms have completely stopped altogether. I wonder if this is what’s happening to you and no physician is thinking of this because they are not giving you a EKG or one of those monitors they have you wear on your body for 72 hours. My heart was doing all sorts of crazy things while I was asleep and I was unaware of why my body was feeling those rushes of adrenaline and why I felt so wired but then so tired, and like you mentioned, just not myself. Nobody wants to feel like that. Well, my life has been different since being diagnosed with SVT but I’m glad I was or else I would be living in fear like before, still wondering what is wrong with me like I was for months. It is better to know what is wrong in my opinion than to wonder, even if the diagnosis is not all that great. If I could help one person I would feel so happy!! With all of this being said, I truly hope you find relief either way but it is worth seeing a cardiologist to rule out the SVT issues! Wishing you all the best and hoping by now that you have found some resolution to this! I know what a nightmare it can be. Please just know that you are not alone.

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