All About Adrenal Insufficiency

[@ConfusedCorvid]

I’m glad you didn’t edit out when you stumbled over your words and the flies. It’s nice to feel like you’re just chatting with us. You seem happy spending time outside, laughing and smiling. I don’t know, I hope you’re doing well 😊 x

[@curtisbemis6640]

how she siad nooo get away from me I about chocked on my cappuccino shes hilarious

[@PhamMitricks]

hey, so first off great video! I enjoyed hearing about an endocrine condition from a patient's perspective. I will start off by saying I am a physician assistant student, and therefore not licensed and all the information I provide is strictly based off of the education and experience that I have received thus far. Just a little disclaimer and I guess I should say, this is not medical recommendation and all that fun stuff. I'll also move forward and say I have a huge interest in endocrinology which your condition falls under the category of so I geeked out a bit when I saw the video come up. And of note, I'll try to be brief and concise, but again, I geek out about this stuff. Anyhow, continuing on... To start, I need to talk about the normal pathway so you understand the abnormal when I explain it. 1st - the hypothalamus (in your brain) releases Corticotropin release hormone (CRH) 2nd - CRH goes into your blood stream and reaches the anterior pituitary gland where it activates the gland, activation of the anterior pituitary gland causes release of adrenocorticotrophic hormone (ACTH) 3rd - ACTH, you guessed it, goes into your blood stream and reaches the adrenal glands (which has the adrenal cortex and adrenal medulla) and activates the adrenal cortex (and of note, the adrenal cortex has 3 parts I'll spare you the details and call them G, F, and R) -all 3 parts I believe are activated by ACTH, but the adrenal medulla is not activated by ACTH 4th - cortisol goes around the body and as you described does what it's supposed to in stress responses and all that fun stuff So the abnormal now... Endocrine conditions are generally called primary/secondary/tertiary based on what is causing the problem. -In primary conditions, it is the organ that produces the hormone itself that is defective (ex. adrenal glands, specifically the F of the adrenal cortex secretes the hormone cortisol) so a defect at this part of the pathway causes primary adrenal insufficiency. -in secondary conditions, the origin is 1 step upstream so in adrenal insufficiency, it is the pituitary gland and ACTH that are defective and not secreting enough. When this happens, you do not have enough cortisol because ACTH cannot turn on/activate the adrenal glands and therefore you cannot make cortisol. (simply put, its a problem at the end of step 2 because you cannot turn on the pituitary) -in tertiary conditions, you go upstream 1 more step. The problem lies in the hypothalamus and you do not make CRH. No CRH, means no ACTH, which means no cortisol. Also to complicate things and geek out more, no ACTH also means less aldosterone (which gets released by the G of the adrenal cortex). This is important in the sense that you are losing 2 hormones, not just one. Also of note, the same effect happened in secondary as well (you lose ACTH so you also lose some aldosterone). And I have to add this little spiel cause it's also important... I said, "less aldosterone" because you do not lose all of your aldosterone release because something else is around to help you release more aldosterone (it's actually another big crazy pathway I won't go into detail of, but there is renin, angiotensinogen, angiotensin I, and angiotensin II). Angiotensin II is what also turns on the G of the adrenal cortex and lets you make aldosterone. Now, to stop myself from overdoing things, the last thing I want to mention is that I heard you say that you were on fludrocortisone. I had to look this one up, but it appears that it helps to keep from losing salt which makes sense to me in a crisis because in a crisis, some problems people have are they become hypotensive (low blood pressure) and retaining salt in this case helps you retain water which well in turn help you maintain your blood pressure. I will restrain myself at that last point to keep from being anymore lengthy than I have been already, but if you are interested to know more or have any more questions regarding this, please let me know! I geek out and love researching and learning more about endocrine conditions. Oh and a non medical well sort of medical comment. Did you need to take any stress doses after this video because of all those bugs? lols

[@CatMamma94]

Wow! Thank you for this comment. I am 25 yrs old, at age 16 I got sick and was diagnosed with Polyarteritis Nodosa (PAN) with Central Nervous System (CNS) Vasculitis. Along the way I developed Chronic Kidney Disease and Adrenal Insufficiency, among many other diagnoses. In the last couple years I’ve finally been more alert and able to follow my illness, listen to doctors and ask questions, and am beginning to understand more about what’s been going on with me all these years. This was a great explanation of Adrenal Insufficiency! Thanks again😊

[@CatMamma94]

Okay so I asked my mom and I have secondary AI. What is the function of aldosterone? I take hydrocortisone, so would that be helping will loss of cortisone and aldosterone?

[@PhamMitricks]

@@CatMamma94 Before I answer your question, I have to say again, this is not me giving you medical advice, I'm simply a student trying to give you some useful information. That being said, I did a little bit of research on hydrocortisone in the use of treating AI. It appears it does have some effect on mineralcorticoid activity (one mineralcorticoid example is aldosterone). So it does in effect help with some of the replacement of lost aldosterone secondary to loss of ACTH. BUT keep in mind, aldosterone is also under the control of renin-angiotensin-aldosterone system and to keep from making another super extensive explanation. I'll reference this picture here: teachmephysiology.com/wp-content/uploads/2018/08/Renin-angiotensin-aldosterone.png (not created by me). But basically since aldosterone can be released by angiotensin II's effect on the adrenal glands, you still have aldosterone released in the body as needed, even though you lose the stimulus from ACTH. edit: Oh and I realized I did not even answer your question. Aldosterone acts on the nephrons (the thing in your kidney that actually does the work) to maintain a balance of salt (and other electrolytes)/wastes and water. Basically aldosterone goes into your blood gets to the kidney, acts on part of the nephron (the collecting duct) and makes it easier to pull sodium back from your filtrate (aka the soon to be urine) into your blood, at the same time, water is also pulled back into your blood (from the filtrate) while potassium is removed from the blood (and put into the filtrate). The whole purpose of this is to maintain the balance of water and salts in your body. So really this happens when your blood pressure is too low because you have not been drinking enough or you lost a lot of blood for example. And you'll note this because your urine becomes darker meaning that it is more concentrated (i.e. all the water got removed from it so that you could keep it in your body).

[@CatMamma94]

Michael Pham Thank you☺️ That was actually very helpful. And a good diagram. I’m sure I’ll understand more next time I’m at my nephrology, endocrinology, hepetology, or rheumatology appointments!

[@thechronicillnessdiaries2773]

So do you know why ACTH is high when cortisol is low? Would that be primary or secondary? I have adrenal cancer. One adrenal removed and my good adrenal is not functioning properly or making enough. I had an ACTH stim test done. ACTH was super high and cortisol super low.

[@HealingWithRachael]

Thanks for making this video ❤️️The last few months we've been figuring out my adrenal insufficiency and it's been quite a challenge!

[@equalsmacsquared]

I have primary adrenal insufficiency caused by Addison's Disease! Primary adrenal insufficiency means its a problem with your adrenal glands themselves, whereas with secondary adrenal insufficiency the glands themselves work but for whatever reason are not being stimulated to produce cortisol. Basically, when you have Addison's that means you have an autoimmune disease that destroys the part of your adrenal gland that produced hormones like cortisol. I was the one the figured out I had Addison's after years of unexplained symptoms and by the time I was tested I had basically no cortisol and 45 times the normal amount of ACTH. Fun stuff.

[@BS-dq1kz]

Wow. It’s crazy how many people diagnose themselves with autoimmune diseases. I knew I had Graves before my PCP did and I’d been seeing him for 7 years. A simple thyroid panel would’ve helped. My cardiologist diagnosed me first visit thankfully. Now, my thyroid levels are good they say. Unfortunately, I still feel like trash. My iron was very low for years and I had a hysterectomy recently. So, iron has improved but some days I’m still so weak I can’t muster up strength to shower or even lift my arms to grab a water beside me. It’s ruining my life. I can’t get any answers and my husband changed our insurance to a high deductible plan. We had to put our daughter in private school and our home taxes went up about $600 all in the same two months. Along with Forsyth Co Ga cost of living and paying many thousands for sports each year, I’m just out of luck. My health has to be on the backburner for now. At least I’ve had a couple things making me feel terrible fixed. My endo appointment was going to be $300 upfront first visit and who knows what else with any blood work or tests. We’ve never really struggled but things are catching up with us. I just need to feel better so I can be the mom/woman I want to be. Do you feel much better now since your diagnosis? Is it very beneficial to see an endocrinologist versus a primary care in your opinion?

[@kytsam8120]

I love your Frey Life Sticker!!

[@annacooper1299]

This is the first video I have seen that actually explains things in a way non-medical people can understand thanks. I have Addisons and I was told by my doctor that the difference between adrenal insufficiency and Addisons Disease is the cause. My Addisons Disease has an autoimmune cause.

[@kristinwallace6551]

Yes. Therefore you have primary adrenal Insufficiency. :)

[@annacooper1299]

May want to check your sources part of diagnosing Addisons is ruling out damage to the adrenal glands. I live with Addisons and have done plenty of research plus information from my endocrinologist

[@petaks01]

You are an unbeatable fighter Mickey! So incredibly nice to see your progress and won battles over the years even if there has been a few really bad days. Loved this very well made video and it learned me more than I expected about AI. Stay safe and ride that bike to show your illnesses that you won't surrender to them. 💗

[@shellymcconn1477]

Great video, I’ve have panhypituitatism for nearly 50 years, after a car accident. It caused the dwarfism that could be fixed with GH, and adrenal gland def. I have been on hydrocortisone all my life among other meds and I was on growth hormone as a child, and now as an adult I’ve been taking it for 20 years. They said I would die at the hospital, at 6 m, but March 1st I will be 50. What a praise.

[@arwa7482]

Medical student here. So there’s 3 types primary, secondary, tertiary adrenal sufficiency depending on which gland is defected. The primary type IS called Addison s disease which means that only the adrenal gland is affected causing it to produce low levels of cortisol. I hope this helps

[@TeenTitanGirl123]

I remember we thought all my AI symptoms were actually my POTS and gastroparesis ( I also have EDS and all its wonderful co-morbilities) then we thought it was because I have a type a dwarfism ( similar to yours my body doesnt produce any growth hormone what so ever so my IGF levels have always been low) but finally my endo ran more test and whala it was AI......I remember when I found your channel I was amazed how coincidentally we had a lot of conditions in commom😊

[@jeremyfield4148]

Hello from Minnesota. I was diagnosed with Adrenal disorder this year after being hospitalized twice, for me my heart rate jumps and blood pressure jumps. They have me on meds now to control it but they never mentioned cortisol. It can cause heart attacks which I had also some time this year. Wishing you the best stay safe and healthy

[@Timothy-NH]

Thank you for making this, it was very educational. A couple ideas for a future video, could even be done together; your every day carry, that is, what you take with you every time you leave the house to ensure your well being. The second one is access/discrimination issues with your backpack. Many places have no backpack policies, wondering if it has ever become an issue for you. Glad to see that you are staying healthy from the virus!

[@ZebraJenn]

I usually think of something completely different when I hear every day carry. haha. As for what I keep in my bag for every day, it'll be what would be necessary on any regular day out of the house. That will look different from person to person. My usual things I check on to keep in my backpack are based on what's needed for me AND 2 kids, so it seems like a lot, but for the various issues between me and kids, it's not much. It's what we usually need for a bad day. Whatever is used gets replenished when getting home or before leaving again. Everything has it's place in the backpack, so I can easily check for what may be missing when I can't focus well. Various meds for me and the kids' different issues. Simple medical first aid like bandaids, neosporan and gloves, and swabs, wrap, etc. Emergency allergies/asthma kit- TX weather changes so quickly that it is essential to have on hand always. Snacks/water: I always have some saltines, pretzels or peanut butter pretzels, oral rehydration salts and my water bottle for anything nausea related. For dislocations, if there's particular joints that I know need support, I go through the braces and grab what I need. Ace bandage wrap for unexpected dislocations until I can get home to pick up the proper brace/wrap needed. Battery packs and cords to charge the phones when unable to use an outlet. Notebook and pens for me to take notes or for the kids to draw and make/play games. I usually also have some sort of gum, hard candy/mints, and now we keep those single use toothbrushes on hand for orthodontic care.

[@Timothy-NH]

@@ZebraJenn Yes, I am one of those "other" EDC people you think of when you hear EDC, but really, EDC does not have to involve such devices, but rather just the stuff that we find, as human beings, we always need with us. As a guy, that list is usually shorter and different. For me, even on a day when I can't carry "that" item, my EDC includes a flashlight, keys, wallet, pens, sharpies, pocket screwdriver, multitool, notebook, mask, gloves (yup, even before this whole virus thing, though the mask was only when I was working, now it's all the time). . . That said, it's always interesting to hear what others consider their must have items, and more importantly, the must have items that a person with chronic illness must have!

[@thechronicillnessdiaries2773]

Adrenal insufficient due to Adrenal Cancer. Fun times. It is really hard because doctors and even ER's don't understand the seriousness

[@Just_Call_Me_TK]

I’ve never quite understood my A.I. diagnosis. I developed A.I. from long term Prednisone use. And my treatment for A.I. Is more Prednisone. Lol

[@KirstinRN]

From what I understand, A.I. happens after long term prednisone use because your body gets used to not having to produce cortisone. Unfortunately, prednisone is needed to treat it. Crazy how that happens- it causes & treats A.I.! However, it is possible to reverse A.I if it’s r/t long term prednisone use (& you can get off prednisone for the initial condition you took it for). I developed A.I after long term prednisone & inhaled steroid use. My endocrinologist started a very slow wean of prednisone over several months. The goal is to slowly wake up the adrenal glands by getting them (& pituitary gland- makes hormone that signals adrenals to make cortisol) to recognize low levels of cortisol & then make cortisol. I was finally able to get off steroids 6-9 months later. Hope this helps explain it better. This is probably more info than you wanted...Hope I didn’t confuse you!

[@ohmbug10]

You're very good at explaining things. This was very informative.

[@SrGemmaRose]

I followed you forever and never knew you had Addison’s. I have it too. I’m not happy you have it but happy to know that I feel like I have a friend in the battle so to speak

[@adnamaadnama]

Addison's disease is primary adrenal insufficiency- meaning that the problem lies within the adrenal gland itself. If you don't have Addison's disease you may have a secondary or tertiary adrenal insufficiency. You would have likely had a synacthen test to differentiate these

[@daisybarton8176]

I’ve just been diagnosed so thank you for this video!

[@rebeccaclavette2329]

Thank you for posting this! My sister just got diagnosed.

[@TheRagbags1]

@life with stripes I hate that wobbly /weak feeling like a puppet with its strings cut . When I feel like this I couldn’t summon up the strength to get excited if I won the lottery. Your video it superb

[@hmt501]

Hey! Your adrenals make a handful of chemicals/hormones that help your body function. The adrenals are told to release these chemicals by a gland next to your brain. If you have adrenal insufficiency because your adrenals are damaged, this is called Primary Adrenal Insufficiency or Addison’s Disease. If the problem is in the gland next to your brain, it’s called Secondary Adrenal Insufficiency.

[@dacisky]

It's so nice to see you making new videos..I hope you do more on your deck as it was so nice and all the birds singing was such a bonus! I also hate loud sounds as well.Even tv's blaring away in Doctor's offices are annoying.

[@curtisbemis6640]

Glad to see you doing good mickey , I'm glad your getting better and able to ride a bike any distance its improvement and improvement on any scale is a win when your cronic ally or terminally ill . 💯💯 Hope all is well with the family and may your spring and summer be blessed.

[@franlats0705]

I LOVE your Frey life decal, Mary and Peter are amazing

[@karken7729]

Haven't seen a new video in a long time. I hope you are okay, You are always in my prayers,

[@tanagiberson4770]

I love The Frey Life

[@sophieamarant1536]

Tana Giberson me too

[@peachxtaehyung]

Me too!!!

[@lillykelly2709]

I also have adrenal Insufficiency- I was diagnosed 2 yrs ago. Am on hydrocortisone which while saved my life. Has heaped lots of weight on my body 😭 but without the steroids I’m a very sick chickie. I also have ehlers Danlos too plus CRPS. Which means movement is restricted. Thank you for a fantastic informative video 🥰

[@MagicalAuroraDream]

Hello! Your video popped up in my recommendations, and I'm glad I clicked on it. It's really interesting to hear the prospective of someone dealing with adrenal insufficiency as something relatively new. I was born legally blind, and with an eye condition that often goes hand-in-hand with hypopituitarism, which I also have. Both the vision loss and hormone issues present differently in different people, but adrenal insufficiency is one of the aspects I experience. It's always just been kind of a fact, that if I get too sick or injured and don't have what I need I could go into shock and die. When I was a kid, I didn't have to take a replacement unless I was sick/injured, in which case I took hydrocortisone. Like you do If I got sick enough, though, I did have the same shot on hand you mentioned. I can only remember needing it one time, when I was about 12. My mom and I were at my grandma's overnight because we were going to a distant cousin's wedding, but I suddenly woke up sick in the night. Mom didn't hesitate to get me that shot and holy mother did that thing HURT! This is coming from someone who has received dayly growth hormone injections basically my entire life. As a teenager, I started taking hydrocortisone once dayly, and now I take it twice-dayly. I've actually been taking extra ever since this whole coronavirus mess started. I'm seriously scared of catching it. I know they're different, but I caught the flu 2 years ago, (and hadn't been careful with taking my meds regularly like a dummy. On top of that, I was taking a half-time course load while preparing to transfer to a 4-year university to finish my psychology degree, filling out applications and all that fun stressful stuff. The flu, which I've had before with little issue, landed me in the ICU with a 107 fever and needing Cortisol through an IV. I was transfered to a larger hospital as our smaller hospital often does when they think someone is going to die. I lost an entire day to fever dreams, and that was about the most terrifying experience of my life. I never want to go through anything like that, or worse, again. It's pretty amazing what being smart with that medication can do. I caught the flu again this winter, but other than feeling crappy I was basically ok with some increased hydrocortisone and Tamiflu. Anyway, I've only left the house once, and that was to go through my bank's drive-through with my dad where I didn't get out of the car. How are you holding up through all this? I hope you and yours are well. Also, it's funny how you mention stress symptems. Whenever I'm particularly stressed, I can get some pretty bad stomach aches. I also had much more stomach upset than usual my first semester after transfering to the 4-year university I mentioned earlier. Although unrelated, I'm inconveniently prone to ear infections as well. Anyway, sorry for babbling. It's just interesting to hear about your experiences when it's something that's always been a part of me. It's kind of like meeting people who go blind later in life when I've been blind my entire life, if that analogy makes sense. My apologies, the later in the evening it gets the more prone I am to leave chatty comments, and I'm a night owl. Stay well, and thank you!

[@Tig78-9]

You said that you were taking extra cortisol because you were scared of catching coronavirus. This made me think of a book I read called "Safe uses of cortisol". In the book he says that taking cortisol before an infection can actually suppress the immune system but taking cortisol after an infection can help you fight it. It's a really good book and I recommend it. They might have it in audio. the author is William McK Jeffries.

[@CatMamma94]

Do you wear a MedicAlert bracelet/necklace? I have Adrenal Insufficiency, among other diagnoses, and need to wear my bracelet at all times. For people who have AI and don’t, you should. For reasons Mickey said in video. If in a car crash or other accident and can’t speak for yourself, emergency responders need to know to give u stress doses of steroids. Or if u are out in public and have an Adrenal crisis. It’s really important to wear a bracelet or necklace 24/7, even at home.

[@MagicalAuroraDream]

GraceFan94 Absolutely! I was diagonosed with hypopituitarism as an infant, including adrenal insufficiency. I've been wearing the bracelet since I was a kid. I had this endocrinologist who, every time I saw him, always checked to make sure I was wearing it. It's just habbit at this point, almost like a part of my body. I literally haven't taken it off in years. I'm lucky I haven't really needed it aside from a little bit as a kid when getting sick.

[@chronic_chiari_warrior7481]

Oh my gosh. You're a "The Frey Life" fan. 😍😍😍😍🤘 I love that. I'm a fan too. Thats actually how I found your channel...through the recommended channels.. from The Frey Life. 😍😍😍🥰❤ love you girly..

[@peachxtaehyung]

Me too!!

[@533134]

You’re correct Mickey! Addison’s, Cushing’s and AI are completely separate from my vague understanding.

[@tairynulven3154]

My dog was just diagnosed with Addison's disease. It's going to be a long road but he has made it thru his first and hopefully only crisis

[@debrahardman6088]

I can’t talk or hear without my glasses. 😂 It’s really a struggle.

[@DuhaMohammad]

We need to be thankful for the luxury of having our adrenal glands regulating everything without us even noticing.

[@Warren1814]

I just subscribed to your channel .. I like your review on the wheelchair you have.. its cool. and i think you did a great job. Hope you are ok... keep us up to date when you can and feel well enough to do so.. After all your health is more important..

[@penelopepolinsneemeyer4757]

Thanks for this, Mickey. Are you and your family keeping safe and well?

[@cierralarry1189]

Something I find interesting is a lot of the symptoms are the same for Crohn’s disease which I suffer from. And most of the first signs are also some signs of severe Crohn’s.

[@benedettocalabrese6492]

Addison’s disease is a particular kind of Adrenal Insufficiency caused by autoantibodies which attack your adrenal glands as an autoimmune disease.

[@Selenelaszlobjj]

The Primary type of Adrenal Insufficiency is known as Addison's Disease.

[@shaunahayden9296]

I got.it cuz of.my chrons n bacl when i found out there wasnt alot of meds beside steriods which i had a severe case which every yrs i get surgery cuz mi chrons just wont settle no matter the meds n with this n lupas n mi heart issues its horrible but thnxs to all these issues n conflicting meds n stuff i have a life expectancy to 40 n im 33 now n mi body is breaking down more n more to point i needed a feeding tube n i was suppost to get a nice bag but thnxs to this virus all mi doc vis r home visit sense i cant b outside now n im in a flare now with my lupas which is causeing issues with it n stuck in hospital now but i came across this vid while laying here but thnxs for keeping normals inform on diff conditions cause alot of healthy ppl r ignorint to some of the health issue but i wish i was strong enough to make vids but im to weak if i looked like how i used to i would but mi health has took a hit to my body mi image everything

[@ioletmcfarland3017]

I had two feeding tubes twice in my life time and that was enough for me trisha d knight

[@alainasatterly905]

Since its ehlors danlos syndrome awareness week you should do an awareness video,hope your doing well Mickey!

[@elladavis3224]

Hi Mickey!! If it’s something you’re okay talking about, would you be okay sharing what caused your AI?

[@meganlouise1125]

I love Peter and Mary Frey i noticed theyre sticker on ur laptop:)))) i just found u i have lupus and am paralyzed i was a nurse and love learning medical info.thanks so much for sharing and i cant wait to get to know u more:)))

[@simonram8505]

How do you get diagnosed? Which blood hormones?

[@MrWisky22]

Thank you for making such a good and informative video ❤️

[@ShadeViking7]

Hello thanks for the video. I have a question if you know that not being able to sleep whatsoever like feeling speedy and not drowsy to sleep etc after being awake all day I can't ever fall asleep ?

[@2bluebottle]

Hey Mickey thanks for the detailed video. Can I ask how did you get diagnosed? I suffer with some of the symptoms you mentioned when I'm stressed or emotional but like you said when you Google it comes up with Addison's. Can you be diagnosed via genetic testing? As I'm hoping to get this done to clarify my type of eds as i was told I got cEDS type but was only diagnosed with hEDS due to it being a rheumatologist that diagnosed me I'm awaiting genetics so be good to know if this will show anything else I may have running in my family or health wise. Thanks always love watching your videos your just so down to earth 😘

[@TheArmybrat12]

Mylifewithchronicillnesses usually it’s diagnosed by an endocrinologist

[@sophieamarant1536]

I know someone with it. She’s one of my Little sisters old friends. Addison’s disease is secondary to adrenaline insufficiency. I already did mine I don’t request Addison disease is usually characterized by the inability to retain water I can’t remember exactly why though.

[@MC-tl5bf]

i hope there is more research on this condition!

[@wispiwispi1889]

Hi Micky. You seem to be doing pretty well and I am glad. Do you still carry the EpiPen with you?

[@dianebarron8362]

Do you think ADRENAL vitamins are of any benefit ?

[@astoryrewrite2268]

My doctor told me addisons is primary secondary is AI. :) but that’s just my experience. My doctor uses the words AI and Addison interchangeably when communicating about my care... just my experience. I am amazing at how many ppl with EDS have AI! I am on a steroid pump Omni pod. I used to have another kind.

[@manueladipiazza936]

I have Insipid diabetic and very similar with adrenaline insufficiency

[@megancollingwood8893]

Hi Mickey, is your adrenal insufficiency caused by your dysautonomia? I was just wondering as I have joint hypermobility syndrome (eds) and dysautonomia and I’m worried it might be one one of those things that can develop alongside? I’m glad you made that video, it was really interesting and educational xx

[@iosis2009]

can i ask, before your diagnosis, how often would you have low cortisol moments? the symptoms you've described almost exactly match what im experiencing and have been for many years. i have these "attacks" on average once, maybe every 2 or 3 years. im wondering if this would make sense in the case of adrenal insufficiency? im calling my doctor tomorrow anyway to speak about it as i've just had my latest attack this weekend and it was horrible. im still feeling lethargic/weak and dealing with pain, and this is already 2 days later

[@amandanewman2676]

It’s odd, I have adrenal insufficiency. A month before I got diagnosed my cortisol was HIGH, about triple the amount it was suppose to be. Then all of the sudden it was so low I was in the hospital. It was just so sudden. ( They checked my cortisol when I first woke up. Which usually means it’s suppose to be fairly low.)

[@sophiehobley828]

Cortisol first thing in the morning is at its highest :)

[@kjetilamanakinorgard2273]

Thank you for this video :) Really well made and very informative. Any chance you thinking of becoming a teacher? because i think you would become a great teacher :)

[@samrae9719]

I think Addison's is like type 1 where you don't produce anything and air you produce some, I've had Addison's disease for 4 years, along with gastroparesis and type 1 diabetes

[@Elijahs_Mama1104]

I just stumbled onto your channel. I was looking up picc line videos. I have ai. I've had it since I was 22, I've had it for 11 years. I used to be on hydrocortisone, I am now on low dose prednisone. Do you have acth stim tests? I was just in the hospital with pneumonia. They had to give me high dose steroids. (That sucked and caused high blood sugar)

[@Orchidmoon416]

What doctor do I see for this? I've been getting these exact symptoms so much lately; diarrhea even though I was literally constipated in the morning, sweating like crazy and only being awake for a couple of hours before I fall asleep again. This keeps happening often throughout the week and I feel so wiped out. Thanks Mickey your videos are always so much help!!

[@TheArmybrat12]

Bri Baldinger you should see an endocrinologist if you suspect adrenal insufficiency

[@Orchidmoon416]

@@TheArmybrat12 Thank you!

[@allisond.46]

Unrelated, but I have almost exactly the same shirt!

[@susanmargaretwills6432]

Allison D ~ Was just thinking "what a nice shirt Mickey is wearing"!

[@dizzy4_u760]

Never been this early for a video

[@dizzy4_u760]

What happens if you have a nightmare? Do the levels get messed up causing you to have to take more medicine?

[@wujiajia5314]

I would think a large dose.

[@lifethroughhereyes3958]

Thanks for the thorough explanation, Mickey! I just wonder if ‘too much’ cortisol is a thing too. Like, can you overmedicate in case of a crisis? Love from Holland!

[@allfortheebchildren6561]

Life Through Her Eyes yes, it is! Some people produce too much cortisol naturally, and some can get a build up through medications they are taking. If someone makes/has too much cortisol constantly over a long period of time, they can develop a condition called Cushing’s Syndrome. Cushing’s syndrome can cause weight gain in abdomen with thin arms and legs, humped back, dark purple stretch marks, easy bruising, thin skin, fat deposits around the face (moon face), fatigue, cognitive difficulties and much more. Hope this helped! Our bodies can’t handle too much cortisol either!

[@sophiehobley828]

The above is true but just to add that in general the advice is "if in doubt then more steroids" because in an emergency it is better to have too much steroid than too little - the problems only occur long term

[@CatMamma94]

Yeah. I had to take high dose steroids for many years and developed Cushings Syndrome. It’s horrible. I was able to wean off Prednisone but I now have Adrenal Insufficiency and have to be on Hydrocortisone. The long term high dose Prednisone also caused AVN (Avascular Necrosis) which led to my left hip replacement at age 19 and my right at age 20. Glad to be off Prednisone, but Hydrocortisone and Cushings makes it impossible to loose weight.

[@lifethroughhereyes3958]

Thanks for all the explanations! I learned a lot today :).

[@catloverKD]

Stupid question, do you get side effects from needing steroids, or does the fact that you're deficient cancel them out?

[@battlingmynotsosparklymons6279]

Weird comment I can’t help but think that maybe an insulin pump with the steroid your using might be beneficial because insulin pump would allow you to deliver a baseline and then when you have stress events you would be able to deliver a Basel dose which is like the extra stress does it might be something to look into might make it a little easier just a thought tons of love and puppy hugs🥰

[@maegand8586]

Battling my not so sparkly monsters I am pretty sure that is a thing. But similar to type one diabetes multiple daily injections are a other option

[@ewmiller6327]

You are just so damn cute. I love watching your videos

[@kaelynnmercier628]

can you make more videos about your feeding tube? i suffer with anorexia but also possibly have eds. along with anorexia can come gastroparesis, but ya know it also can come along with eds. i have a GI appointment on the 13th of may and i’m afraid because i can barely get in 800 calories a day. and even then i’m miserable and so bloated. i’m afraid of getting a tube but i know that it will help me to get better. :)

[@melissac3618]

Hi! I had an eating disorder for 8 horrible years back in my teens and early 20s, and now there is suspicion that I have EDS. I just wanted to reach out and say that, while I understand your nervousness about the GI appointment, try to fight the anorexia. You can't always wait until you "feel ready." I thought I'd die from my eating disorder before I recovered from it. I was wrong. I've been recovered for almost 20 years. Fight the good fight because there is a lot of wonderful things on the other side! You don't need anorexia, there is too much life and beauty in it ahead of you and anorexia doesn't fit into that. I wish you the best life has to offer!

[@kaelynnmercier628]

Melissa C awe thank you. i was going to therapy but that wasn’t helping and because of social isolation i can’t go anymore. i didn’t like my therapist anyways. she tried telling me that i was making up my eds and gp and that it was just anxiety. just because i don’t have a diagnosis yet doesn’t mean that it’s just anxiety 🙄

[@melissac3618]

@@kaelynnmercier628 I think the majority of us are told we're making up our EDS. 🙄 Yup, I imagined that I dislocated my shoulder while sleeping. SMH! Have you considered getting a new therapist? Or try support groups, once groups are allowed again- that's what helped me finally turn the corner and start actually recovering. I'm sure there's some groups doing virtual meetings, and there may be a therapist around doing virtual sessions as well. Just an idea!

[@kaelynnmercier628]

Melissa C it’s hard because i am 14. my mom doesn’t believe i have eds. my shoulder is chronically subluxed. in the morning i have to pop my hips back into place. and my elbow. but i have never brought it up to my doctor. now that i’m going to a children’s hospital for my gi appointment i might bring it up. i pass a 8/9 on the beighton scale... i’m just continuing to get worse. but my mom was like “if you dislocate you’re hips you would be in so much pain and unable to walk” and when my hip is out i can’t walk without pain. my hip, knee, and ankle will hurt when my hip is out and then i have to put it back in. but i only do that in my room because if i sit down on the ground my dogs will attack me 😂. i think i might start recording myself popping my joints back into place. idk sometimes i feel like i’m making it up. both my anorexia and my eds/gp. but i think that’s just because i have gotten so used to dealing with it alone and it’s just my life now.

[@melissac3618]

@@kaelynnmercier628 If you know something is wrong, don't let anyone persuade you otherwise. Definitely bring it up at the GI office. They may do nothing, they may refer you to someone else, they may just make a note in your chart and call it a day. But make sure you advocate for yourself and speak up. And I get it about the hips! My left is my worse one and will sometimes pop out, then in, then out, then in when I walk. Those are bad days. Just keep standing up for yourself. I'm sorry your mom doesn't believe you but in her defense EDS is so unknown in general that it may seem hard to believe anyone has it at all.

[@michaelweiss6791]

Mickey do you still have POTS besides having all these other conditions. I have been away for awhile .I have been battling this syndrome for 32 years. But recently have been recovering from my second spinal fusion surgery on both sides of my neck .I had a trial spinal cord stimulator placed on my lower part of my left thigh on December 2nd, 2019 but shortly after the procedure I had to be rushed by ambulance to Fairview Southdale Hospital in Edina because both my heart rate and my blood pressure had crashed. On December 28th I had the aactual spinal cord stimulator implant for the last 4 months I have been going excruciating pain in my neck despite the implant that should have lessened the pain it has not. So that what I have been doing with my life. There are numerous other things related to POTS that don't ever stop. But I understand that and have accepted most of them. I will not go into them now. If you want to talk with I have messenger. By the way did you like the Dysautonomia Project book I sent you a few days after we talked inside the Target store in Waconia? It is quite good and I have been on a personal crusade to educate the medical community and their nurses. 32 copies have been handed out or donated to the hospital libraries in Carver County, Wright, McLeod Counties and area schools to the school nurses. Most recently to my new nurse case manager. She was ecstatic about it. Okay well I touched base again. I have not forgotten about our intense conversation that day.I am an empath so I knew you were in great deal of pain. Last comment I am the moderator for the Minnesota POTS support group. The administrator is Kristin Tiarks. We 237 members ( warriors) strong. I invited one of the members to watch your vlogs because she really needs some reassurance from someone her age and I thought of you ,and what you have endured so far in your young life. I look up to you you are amazing.

[@monaortiz4484]

What caused your adrenal insufficiency

[@jeanwoods4128]

Hi from leicester england....is this common for people with eds?

[@sarahdossor296]

Do you get allergic reactions since you need to treat with adrenaline and steriod

[@blood_wolf16]

I have a question can you still have a kid or do you have to adopt I always wondered that

[@AmyThePuddytat]

Hmm, adrenal insufficiency due to CAH correlates strongly with Classical-like EDS, since the genes are adjacent to each other. Do you perhaps have CAH + clEDS?

[@Truerealism747]

Getting testing next year I have lot muscle pain us this fybromyalgia or lack energy f cortisol

[@mattielynnsawyers4139]

Can someone tell me if shes been posting on instagram or something because I dint have ig but I need to know that she is ok

[@martynabieniok9669]

Yes, she is posting on instagram

[@zachariahayers6273]

Your talking about Artificial Intelligence

[@rielysanke988]

Was it caused by your Eds

[@erikcade]

how is your knee doing

[@claudiaberger9560]

It's a good thing you weren't born in my country, Guatemala. Such a noisy place! That's the only thing I like about the current lockdown... There's silence 😁

[@chronic_chiari_warrior7481]

Adrenal Insufficiency and Addisons Disease are the same thing.. different title/Name for them.. I looked it up! 😍🥰 The Hydrocortisone replaces what your body would naturally produce when you have Addisons disease. This is cool. I know some of this because my Dad has Addisons disease. I've seen him "Crash" so to speak and it's scary.. its important for him to take his meds.

[@sofieheiner3299]

Alex Cooper they’re actually different :) Addisons is an autoimmune disease, AI is normally caused by something (like a tumor, over-use of steroids etc). They’re both very similar, but sometime AI can resolve whereas someone with Addisons will live with it forever!

[@chronic_chiari_warrior7481]

@@sofieheiner3299 oh ok. My mistake. Ya learn something new everyday!

[@surlespasdondine]

But when you have Addison's you have AI.

[@nikkiwunderlich3570]

I was born with AI

[@sadbhfalconer1563]

Hop you and your family are okay

[@usamarafieck1715]

Who are you really.

[@Wall_Walker14]

Thirddd

[@sweetlyemmie]

second

[@xiSWIIFTix]

First

[@CappyMoon369]

Love your Frey Life decal !!!