Adrenaline spikes: Med detective needed, award given

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.

@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).

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.

@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

@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

@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

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

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!

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

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.