NEW: My Addison's Disease Journey
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- Опубліковано 6 сер 2021
- I’m using this channel to show more of #LifeBehindTheLens ➡️📸 The ‘not-so-perfect’ life often not posted on social media…Life with a chronic illness.
This video is all about my journey to being diagnosed with Addison's disease/adrenal insufficiency.
Adrenal Insufficiency/Addison's disease is a rare disorder of the adrenal glands, pituitary or hypothalamus where the body is unable to product cortisol, a hormone required to live. Patients with AI are steroid dependent and run the risk of 'Adrenal Crisis' where the body requires more cortisol than the body can produce and goes into shock. If untreated with a life-saving emergency steroid injection, this can lead to a coma and death...
Unfortunately, Addison's Disease often goes undiagnosed for a long time and patients don't reach a diagnosis until their first crisis...this is what happened to me.
For more information of Addison's/AI: www.addisonsdisease.org.uk/
FAQ:
Who are you?
My name is Tilly and I'm the original founder of @thatoxfordgirl (www.thatoxfordgirl.com). I got into and graduated from Oxford Uni whilst living with active Tuberculosis.
What's your health situation now?
I started TB treatment and finally got my life back! But in 2018 I was rushed into hospital in a life-threatening adrenal crisis. I have since been diagnosed with Addison's Disease/Adrenal Insufficiency. Sadly, the medics have struggled to get my condition under control. They now believe the TB has returned and is putting my adrenals under huge pressure.
What's daily life like now?
Daily life is a balancing act. I am on huge doses of steroid, taking tablets all through the night, as well as a hydrocortisone pump injecting cortisol through a cannula into my tummy 24/7. I have also recently recommenced Tuberculosis treatment, a combination of chemotherapy and antibiotic treatment.
What's the aim of this channel?
To raise awareness for all those superstars out there living with long term health conditions. To give you an insight into life with Addison's disease, Tuberculosis and to show you that my story is proof you mustn't give up. This is a channel focused on positivity, patient stories and coping strategies I've learnt along the way!
Instagram: @thattillyrose / thattillyrose
Addison’s since i was 17, that almost killed me (1996). Here are some tips that after 25 years can help. I am also a Type 1 diabetic since 2008. I am 43 now…
1. Salt. Don’t be afraid of it. Pickles, kimchi, sauerkraut, chips and salsa i know i know you all love it. It’s salty AF! Your body doesn’t process salt like normal people. Enjoy it and when you feel faint or light headed you are low on sodium.
2. Don’t over due water. I know you hear how much water you need but it’s bullshit. Drink when you’re thirsty, our ancestors for thousands of years didn’t sit around drink 20 gallons of water a day. The more water you drink the more you flush salt out of your system. Deadly, be careful.
3. Stress, don’t be afraid to take extra hydrocortisone when you’re sick or stressed. No need to overdue it but an extra pill here and there is a life saver.
4. Sleep, you have a rare disease that cause fatigue like a mother f’er. Get your sleep preferably 8 hours and when you need it trust me your body will tell you. Do not take your hydrocortisone too late in the day or it will keep you awake.
5. Eat clean! Do not put garbage in your body, it will affect your Addison’s. I find a paleo diet works amazing for me but I’m also a type 1 diabetic. Trial and error, do you. Stay away from junk food.
There is lots more but this is the important stuff. Good luck.
Good advice Thank you
Omg lord thank God I read this. I been dealing we of stress daily. Feeling estómag flootin to much too that's the worst part. Feeling cramps feeling we to much anxiety too i ask my endo and he's say he don't why 😭 it's been 2 weeks like THIS 😭😭 any recommendations ?
I’ve also had Addisons since I was 17 and I’m now 38 ! How u coping on day to day? Honestly?
@@Hayley-jw2xi how you dealing each day??
@@Hayley-jw2xi Dear Hayley, I thave my dose of H.cortisone regularly at the prescribed time. Occasionally I miss but 98% I don't miss it. I am retired and 72 years and it is not difficult to do unlikely a working person or a person with family responsibilities. I depend on the phone alarm to remind the time. I do take other medicines for my hypertension, diabetes and a lung condition. I also have a pace maker after I had what is medically called "complete Heart Block" . Actually Addisons was diagnosed while I was getting treated for these. I lead a simple life eating moderately and doing the walking exercise regularly and also mindfulness meditation. I go to the doctors as they decide with the prescribed reports . In Sri Lanka we can directly go to any consultant of the relevant medical field directly, also our hospitals too are handled by competent doctors and in the event necessity the patients are referred to the relevant specialists. May all of us with Addisons be well and safe.
I am from Sri Lanka and was diagnosed having Addisons in Jan 2021. Thanks to my Doctor who was concerned about the fluctuations of my sodium and potassium levels tested me for Cortisol and was diagnosed before getting in to crisis situations. He put me on to a Endocrinologist and I am on Hydrocortisone and taking them without fail three times a day. I am 72 years and managing this well by going for regular visits to the doctor.
Hi, I think I have undiagnosed Addison's. How does sodium and potassium represent that you have it on blood tests? What should I look for? Hope you are much better
Was diagnosed at 22, it's has been very hard to cope but it's nice to meet other people who are affected
My GP thought I was depressed because of things happening in my life. When it was confirmed that I had Addison's Disease, I felt so vindicated. Everyone was telling me it was in my mind. I craved salt, pickles, and lemons. I have olive skin and my GP thought I was using self-tanning lotion. I thought, really? Thank you for sharing this.
Thank you for sharing your story. I was diagnosed in 1971 near my 18th birthday. I had contracted a wicked strep/ staph infection at Children’s Hospital in Philly. My brother had been in for surgery and I became violently ill. It took many weeks for me to recover, the strep was treated but the staph lingered. Over the course of the next two years I was constantly sick, all the while in high school and beginning a career as a musician, which meant hours of practice and performances on top of my schoolwork. Insidiously, I felt worse and worse but still functioned. By the beginning of my second semester of music school the boys were carrying my up the big staircase to class because I’d faint if I tried it myself. My skin was a sallow putrid bronzy green, I ‘d developed blue lips and blue pigment on my skin. I was sleeping constantly and people had to get me up. Every free period I was out cold in the lounge. At Christmas vacation my mom took me to the doctor and showed the brown streaks in my nails, described all my symptoms and explained that I had slept through the entire Thanksgiving break. Entered the hospital, did the urine test thing and that was 51 years ago. I’ve has a long career as a music teacher and church organist, and am still doing it. I also have a daughter. I’ve felt like actual crap through a lot of it, but in the long run you don’t dwell on that.
Always take your meds at the exact same time every day with food.
If you feel like shit take an extra pill, call out sick and sleep.
Try to eat an anti-inflammatory diet.
Surround yourself with people who support you, not those that constantly question your limitations.
Keep gatorade and bananas on hand.
Regiment your sleep, eating and exercise habits.
Live long and prosper😻
That was a long time ago!Glad ur doing Ok I love ur positivity. I was finally diagnosed a month ago after having 3 crisis in 3 months its been a rough time but Im doing ok now.I’m 20 years old and being diagnosed this young is rough. I have a lot of concerns about the whole thing so can i ask you some questions.
How do you manage this disease?
Does this disease cause you other diseases like diabetes or thyroid diseases?
Does the medication that we take have really serious side effects? I know ur not a doctor but seeing people experiences can help out too.thank u so much
in my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
I lived with undiagnosed Addison's disease because the endocrinologist said that it was not possible for me to have Addisons because it was such a rare disease and that "everyone" who came to see him thought they had Addison's even though my PCP had made a note to run a test for Addisons, the endocrinologist refused. I had all those symptoms, in fact sometimes when I was driving I would get this heavy drugged feeling in my head and I would pull over in a parking lot and try to let it pass; to this day I am grateful I did not end up crashing. So for 10yrs my respirologist unknowingly saved my life by prescribing Prednisone for my asthma, I think its the only thing that kept me from slipping into an Addisonian crisis completely. Except that it all came to a head when I got into a accident and the airbag gave me a small burn on my leg. The wound care kept trying to treat it, but a series of errors and arrogance made the burn worse and the wound bigger, and since they didn't take the thought that I could have Addisons seriously they kept trying to treat it instead of sending me to a specialty clinic. For 4 months I had this raw open wound and thru it I contracted sepsis and the sepsis went into my spine, ravaging it and eating the entire bone(s) from the L4 down. It almost killed me, I was in the hospital for 9 months and part of it was on the ventilator because my spine had collapsed and no surgeon really had hope for a successful operation because I was in septic shock. I got lucky that a surgeon did give me a chance and was able to perform a Hail Mary operation, getting a cage drilled into my hips. When I was finally taken off the ventilator and the doctors came in, they told me that all this time I had been living with Addison's disease, but the damage was permanently done to my pancreas and I have no feeling below the knees so I am wheelchair bound and I have sepsis permanently residing in my bones. The drs have put me on Pallative Care because I have to live with a very dangerous combo where my body is fighting itself 24/7. Having Addison's disease has given me something called Brittle Diabetes (a kind of type 1) and chronic necrotizing pancreatitis as well as Gastroparesis and severe uncontrollable nausea if I'm not careful. The Addison's makes it almost impossible to have good control over blood sugars no matter how on top I am of it. I have to be so careful of even the smallest of wounds because the Addisons causes healing to slow down and the sepsis loves high blood sugars and wounds. And then there is the Addisonian Crisis's, omg. I wouldn't wish it on my worst enemy. And my poor husband has to be the one to help me thru it. He no longer takes me to the ER because the first thing the nurses assume is that I've OD'd on my pain meds and won't listen to my husband when he insists that they can count the pills that they are all there and that its Addisons and they have no idea what Addisons is. For me the only thing that has helped is intermuscular hydrocortisone more than the pills. But its a disease that makes me feel so alone, I've been wishing to find other people who also have Addisons where I can share or if there is a way to make something a little easier to share that. I'm glad your channel came up on my FYP. Thank you for putting your story on here.
in my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
Holy fucking he'll that's a shocking story. Hope you're doing better now.
Omg 😳
I have been diagnosed with Addisons Disease when I was 13 yrs old.Now I am 42 years. I had participated in School Sports Day for which I had started practicing for about a month & then after the Sports event,my mom started noticing that my fair skin was getting darker day by day.i was feeling very tired also,but didn't know what was the reason for the same.So my mom took me to a skin specialist & I was very lucky as the doctor was a very knowledgeable person,he told me to do some tests & when the reports came,he said that it was Addisons Disease.So he directly referred me to one of the best Endocrinologist in my city & then my treatment started.when I was going through the other comments,I could see that many people had very late diagnosis.So that part I think I was lucky.I have had my share of struggles,but I have accepted my illness from very early on,as I think that there are more people in the world with much serious health issues.U need to take very proper care of yourselves be it taking medicines on time,sleep, exercise & eating wisely but most of all u need to have a good endocrinologist who can guide u properly.
Hi mam..
Hello Mam...felt good after hearing your experience...Recently my 11 year old diagnosed with addison's disease and then AAA ALGROOVE which is a very rare genetic disorder..I am totally shattered...but after reading comments of other people I feel there is hope to maintain it
I have been diagnosed with addison disease one year ago. And this channel is really helpful. Just wanna let you know that there are some people in this world ,going through similar sort of experince and these videos are a super motivation for us as patients. Keep them coming in this channel. Bravo to all addies !!
Thank you so much for taking the time to comment and let me know! Sorry you have been diagnosed with Addison’s, it’s a tough illness to manage. I hope you are managing to stay stable. Really pleased you are finding this channel useful!
I got the same too. Feeling horrible to much stress 🥺 daily
@@missyolyz671 try-out breathing teqnichurs
@@ThatTillyRose in my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
You don’t see it, but I feel it. You don't understand it. But I live with it every single day. You think I'm lazy and feel sorry for me, but I am stronger than you will ever know. I fight for awareness because Addisons Disease is so rare, and we only want the respect we deserve.
in my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
Tysm for sharing, I finally feel like I’ve found my people here in the comments. Diagnosed with Addison’s at 36, I had to have lived with it undiagnosed for 25+ years. Getting an actual diagnosis was absolutely life changing. When I was admitted during my last Addisonian crisis, before being diagnosed, my sodium was 112. I’m lucky to be alive. ♥️
Damn, how did they figure out u had it for 25 years?
I just was diagnosed and my mum had it a max of Four Months and passed away cos there was not a lot of info in early 80’s but I have been told you cannot love with Addisons disease without treatment and it would become fatal quickly
Hi, I'm so glad you finally discovered your diagnosis. I've been ill since childhood and now in early 30s I'm being fobbed off with chronic fatigue. How do blood tests show Addison's regarding sodium.. Is it high? Are there any other markers to look out for? I'm having to be my own advocate even though I'm so so poorly. Many thanks for any advice
Lovely girl ..THANK GOD FOR YOUR MOTHER.....🌼💖🌺🌸
This video is great, very revealing. Thank you ❣️
My cortisol level was 6.65 I have drenching night sweats- my sodium was below normal- my SHGB was very high. I am 105lbs, losing weight without trying- female age 36 I struggle with depression and anxiety- I have an ice chewing addiction- my skin is terrible and have cystic acne- super irritable. Freezing all of the time. I hope my doctor does further tests for me to see what’s wrong.
Have you done an acth test? Ask for thst if your cortisol levels are super low. If that in incobclusive, do an other test for glucocorticoid. You need to know you 3xs = salt, sex(hormones), sugar levels and also your HPA-axis=hypothalamus, pituitary gland and adrenals. It can be hard to diagnose for doctors so try to stay on top of it.
Thank you for sharing your story Tilly.
I also have addisons disease. I too could not climb stairs. Was diagnosed 24 years ago
I just watched your video. I’m balling, ty for doing this. I’m hoping I can tell my story as soon as I feel better!!❤️ I’ve been diagnosed with Addisons Disease, Multiple Sclerosis, interstitial cystitis, Fibro, stomach issues etc etc, I’m sure you know the drill! I subscribed!! Hope you are feeling okay today….
Hearing your story makes me want to cry because it's very similar to mine. Thank you for sharing.
Thank you for sharing
I found last week, and you nailed every single symptom, guess what?
I guess I joined the club.
I wanna thank you for posting this video. It gave me enough information to self advocate and have some tests run by my doctor to check for Addison's.
Today is my one year anniversary of being diagnosed with SAI. I found our video & wow YES I can relate. I’m so happy you are healing & also sharing your Addison’s journey. I too felt like I was being drugged & said this a lot to my family & physician.
This has been a tough year but it’s getting better. The biggest thing for me is stop questioning to updose when my body needs it.
Thanks for sharing your story!
Hugs & Kisses from Chatlotte, NC.
Stacey
Wow this video hit close to home. I’m so sorry about your experience. I was lucky enough to receive my primary adrenal insufficiency diagnosis in less than a month after I first visited my doctor. The key to my diagnosis was my tan and salt cravings. I kept getting complimented on my skin in the middle of winter. I never tanned much even in summer but my skin was a beautiful golden colour. I was trying on wedding dresses and my mom pointed out that something was wrong when she saw how dark my back and under arms were. Thankfully my doctor listened to my suggestion to test my cortisol and ACTH levels and I was diagnosed quickly after.
I really sympathize with you regarding the emotional toll this took. I had no idea why the last year I would just cry out of the blue but it all makes sense now.
Thanks for sharing your story!
Hi Tilly!
Thanks so much for this video!
I have secondary adrenal insufficiency. My pituitary gland was damaged from Immunotherapy for Stage 4 Melanoma. There's a few of us in the Melanoma community that have Addisons disease as a result of these Immunotherapy drugs. I had my first adrenal crisis 2weeks ago and it was very scary.
I found your videos searching for adrenal insufficiency symptoms and treatment. My endocrinologist is having me go for labs tomorrow morning. I've been severely nauseous and vomiting multiple times a day for close to THREE months. I was in DKA (have diabetes) at the start of the vomiting. I've since had a gastric scope and found that I have severe gastritis and an ulcer. Endocrinology told me to speak with neuro about going on Dronabinol to help with the unrelenting nausea and vomiting as well as staying on my IV fluids (saline) as well as gastro about the possibility of having a gastric stimulator placed if the Dronabinol doesn't help.
My 20 year old daughter was diagnosed 10 years ago with Addisons . The GP said it was “ just a virus “ the next day I took her to the hospital and told her they are going to tell her “ it was all in her head , or stress” I told her we would not believe that and stay at the hospital until it was diagnosed ! Her blood test showed low salt high potassium ( two very common symptoms of Addisons . She was admitted to hospital to bring up her salt levels . Then the miracle happened ! The doctor on call asked if My daughter was always so dark skinned . I said no . He said I know what it is ! Addisons diseases , adrenal insufficiency !
I have to say the days before the diagnoses , my daughter had a feeling she was dying , she asked her sister to wake her in the night to make sure she was breathing ! She had lost lots of weight , had days when she could only sleep but then some good days. Also very low blood pressure . Oh and a craving for pickles and other salty foods .
On a side note , in days gone by patients with TB frequently died of Addison’s disease caused by the TB .
10 year old? Jesus what a fighter i was 27,5 my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
I'm awaiting a diagnosis of Undiagnosed issues. Being so tired you can't lift your head off the pillow and like you just had anesthesia is how I feel every morning.
Thankyou for your video and I have subscribed. I have just been diagnosed with Addison disease . This year I have been diagnosed with diabetes, respiratory failure and now this so it’s been a real rollercoaster. Thankyou for your video it’s so helpful . This is just another big life changing disease. I’m in pain, hot and wheezy . I struggle to walk to the bathroom which is 6 ft in front of me. I have stayed at home and it’s been physically exhausting. I have a good support with my family . Have you had seizures ? I have had other diagnoses which have also been difficult . I will subscribe and Thankyou so much
Thank you for sharing your story. Thank you for encouraging folks . The last 3 years , I’ve been hospitalized 4 times . Each time - no clear diagnosis. Extremely low blood pressure causing me to faint . Bizarrely I’ve had severe salt cravings for at least 30 years…? Recently a friend suggested going off of gluten. 👍 Haven’t completely committed to this .♥️🕊♥️
You are such inspiration 🌼thanks for sharing ur story!! I was just dx after yrs of being sick and collecting dx’s and specialists as well. I just had a bilateral joint fusion ( which triggered crisis) and now I have severe nerve pain in my legs. Do mind sharing what kind leg pain you had with ur Addison’s. Thanks so much!! Blessings to you!!💝
Btw: Love your cushions.
Sorry to hear the doctors didn't get you answers sooner. GPs should always give a referral to a specialist if they are not completely sure about their diagnoses.
Thank you so much for sharing your story! When I was in my early 20s (now in late 40s), I was suspected to have Cushing’s Disease. I remember having such similar symptoms!!! I actually have a genetic condition, vascular Ehlers Danlos Syndrome. I find your story very interesting and can relate to a lot of it-including the difficulty of getting a diagnosis and all of the pain and fatigue. Climbing stairs is so hard for me, too!! Takes almost all my spoons! LOL. Thank you so much for sharing!!
I’m so sorry to hear you had such a long diagnosis journey and that you are still going through a tough time! I was tested for EDS. It’s so challenging when climbing the stairs can prove impossible! Sending you lots of positive energy 🤍
I’m studying to be a nurse, so I like hearing the stories of people with illnesses so I know better and I want to aid in treatment and overall get a better understanding. I myself, am narcoleptic so I know what it’s like to be a patient, and I just hope I’ll do my best to aid people : D
You are a great person, and I hope more people like you work in the medical field. It gives me hope.
I am sorry it took that long and that many doctors!!!!!! My first GP kept saying I was depressed, and offered my counselling. I kept saying I am. not depressed. Luckily, I fought to get tested, and it was Addisons. You have to fight in the NHS often, to get seen, to be cared for in the right way. I have been misdiagnosed several times. How very frustrating and dangerous loss of time to get essential help. I feel you!!!
It took me months to be able to see an endo in the US. He would only run a cortisol test and said a low acth, and dhea meant nothing as did my sleep pattern. It took 8 months to see the next endo. I have private insurance but would trade you health systems any day. I paid 10k out of pocket one year on top of premiums and co-pays.
I was very different to you. I wasn’t diagnosed until I was in my fifties. It took nearly six months with three hospital admissions. The first because my potassium levels were dangerously high, then my calcium levels were high. I went a dark tan colour and was fed up with people asking me if I had a good holiday when I felt awful. I had two medical consultants when admitted the second time they thought I had myeloid cancer and that really upset me. I had 14. Rays over my body and even a bone marrow sample taken from my hip - agony! They even put a camera into my lungs and diagnosed sarcoidosis. I went home still losing weight and depressed. A doctor put me on anti depressants. Every bone in my body ached and I went back to my doctor’s surgery again. A locus doctor thought I had
Poly myalgia. Luckily she gave me Prednisone and, magically the pain disappeared overnight. I had a call from my GP a few days later asking me to go in. She diagnosed Addisons so after seeing three consultants it took my GP to diagnose me. I’ve had two crises over 10 years, both very different, but live a healthy active life. I consider myself lucky with a wonderful Endocrinologist
Endocrinologists are the best and most caring doctors left in this world. The rest are ill equipped and uncaring. At least my experience in a big city. I was in pain for 5 years, had one gland removed- that pain got better but now I have a lot of problems still. I went for a walk and it took me a week of agonizing pain to recover, and then after a week of agony, spent the day puking. Life is hard.
How are things going these days? Hope you're well
Your truly inspiring I was looking for someone to relate to since my diagnosis. It’s not being controlled properly I’m with a new endo because the first one was clueless and actually had me feeling worst. I sometimes wanna give up I’m tired of going to the er every other day. Always feeling weak and tired and falling to sleep in the most awkward times. I have n tire support because no one understands it. They think I’m lazy because of me always falling asleep and a liar because when my levels are high I’m doing everything because I know I’m going to crash again. I was very active social always busy now I can barely get out of bed. My son who’s quite young tells me your always sick mommy. I hate that he see me this way but I’m a single mommy. It’s very much hard. I’m currently having issues with with muscle weakness and nerve problems. I’m very down and tired of pretending I’m happy or ok . Watching you is truly something to look up too. Thank you
Hang in there Lacarrie and don’t overdo when you feel good. It seems like viscous cycle of overdoing and then getting super sick. I did this for a long time because I needed to take care of my mom and do laundry, etc. but you need to get help with chores. Be strong at doctors and get tested for Addison’s and other things too like Lymes to find your problem. Keep going to doctors and don’t give up.
What medicine are you on. Some of us do better on prednisone, some hydrocortisone, some prednisolone. And even still some a mix of them. I took prednisone and hydros for a white. And it can change as well. You might do well on prednisone fir a year and have to switch.
Make sure you have florinef(fludrocirtisone) as well. Also things like too high potassium level could bring those symptoms on. Me, I've never been abke to get back to pre diagnosis energy levels.
My friends and family where tired of me saying I didnt feel good and no one could figure out what was wrong with me then I fainted and broke my foot and the Dr was paying more attention to me fainting, finally after 5 years off illness i was diagnosed with Addions
Same thing happened to me. I fainted and broke two ribs. After a week in the hospital did my doctor take me seriously.
It took a Internal Medicine Doctor that did a simple blood test to find Addisions Disease.
in my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
Hello thinking of you and I hope you are well ❤
I'm 28 with adrenal insufficiency. I was undiagnosed for years. Getting on hydrocortisone made me able to function again. DHEA helps too. And eating tons of salt. Licorice also increases the half-life of cortisol significantly. I would never have expected you were adrenally insufficient, you sure have a lot of energy when you talk! I hope all goes well with the TB stuff, this sucks being young with so many health problems. By the way, the book "Safe Uses of Cortisol" might be of interest to you, if you don't already have it. It's excellent.
So pleased to hear the hydro has helped you! Haha sadly only film when energy levels suffice, my adrenal journey has been quite the rollercoaster! Thank you for the book recommendation will definitely check that out!
@@ThatTillyRose Enjoy. It's wonderful. It also explains what to do in case you get sick with an acute illness. By the way, what's your daily hydrocortisone dose? Do you take any other adrenal hormones such as pregnenolone, dhea, etc?
How do you use licorice in order to extend hydrocortisone? I also have Addison's and I want my hydrocortisone to last without having to take more and more.
My understanding is medically liquorice really isn’t advised for Addison’s patients.
@@thesmartgene Liquorice mimicks aldosterone(florinef), therefore people with Addison's should Not eat real liquorice
It's interesting how you said you feel worst in the morning and then gradually improve as the day goes on. I couldn't understand why this was happening, how I only get night time to live really..
Very weird indeed, cuz usually in the morning your cortison level is the higest
@@topacybits3576 i found out my cortisol is great. I guess I probably have nerve damage from an epidural gone wrong 9 times poked. Its literally the worst pain anyone can go through and ive been left to endure it so far for 6 years.
Basically in a normal person your adrenal glands start releasing cortisol about an hour or two before you wake up to help you wake up. Addisons patients don't have this so we wake up feeling terrible sometimes until we ingest our medicine.
The salt cravings are due to low aldosterone levels, normally produced in the adrenal cortex. It's associated mostly with late-stage primary Addison's where the pathology is autoimmune.
Omg I am so thankful I just came across this video. Thank you so much. I was just diagnosed with Addison’s and Graves in august 2021, 6 months ago. I have been so very Ill just like you are saying. I had a crisis 3 days ago and just got out of the hospital today. I couldn’t get outta bed I was profusely throwing up non stop for hours. I couldn’t even raise my head up off my pillow. Oh yes and the steps! That’s been an issue for myself as well. I have been sick the entire 6 months since diagnosed and months and months before diagnosis. Seeing your video gives me hope, you look amazing. I am still very very I’ll so it’s hard to see the light right now. I can’t thank you enough! 😊
I have graves and am experiencing so many awful Addison's type symptoms, how did you figure out you had both?
A doctor has fo diagnose it
Thanks for sharing! I think I have Addison’s disease. I’m 14. I passed out and was sent to the hospital in a ambulance from school in April/March. I have been a little paranoid over everything. This past month has gotten a lot harder. Particularly these past 4 days now. ( today’s Wednesday). On Sunday around 11pm I was taken to the ER by my mum. I was shaking, headache, stomach pains, nausea, dizzy. She thought it was a panic attack. I’m thinking it’s a addisonian crisis. Currently I haven’t been well enough to go to school, cheer or gymnastics all week. I tested negative for flu and covid. I have vomited, barely able to eat, constant headaches, dizziness, lightheadness, extreme tiredness, salt cravings, dehydrated, diarrhea, lower back pain, cold and shaky. The ER said to schedule an appointment with nephrology which is scheduled for 21 days from now. We also have to schedule appointments with my pediatrician and a therapist. I was prescribed medication to help with nausea and headache. As well as I’ve been taking diarrhea/stomach calmer medication. After coming back from the ER they said I was undiagnosed. But my symptoms and story is similar to yours and I think I need to be checked for Addison’s disease. I haven’t grown much in the last 1 1/2 years. Barely or not even full inch I believe. No breasts or a period. Delayed puberty. I think I may have some hormone deficiencies. Included what causes Addison’s disease. I will come back to update as time goes on.
Did you get a diagnosis? I am also trying to get the right diagnosis after months of issues and multiple ER visits. I'm 6 months in and want a hormone panel run next hoping it has some answers. Low Aldesterone, Renin, Cortisol but no diagnosis or medication help.
@@holysnappersASMR Hello, I was diagnosed with bow hunters syndrome a rare cause of vertebrobasilar insufficiency. Still looking for answers regarding blood pressure. My lymphocytes levels are off, as well as a few other labs. I was sent for a CT scan in the ER and that’s how I was diagnosed. I was immediately admitted into Childrens hospital neurosurgery center. I am thankful out of the hospital surgery free. Was in a cervical collar for over a month and recently got out of it. I have had 2 MRI and MRA done. I have braces on the teeth and that affected the scans. I am due to get some in February without braces. I have follow up appointments with Neurosurgery, neurology, nephrology and cardiology. Still searching for more answers unfortunately. New scans will determine if I need surgery.
@@BriannahHoward you appear to be an incredibly intelligent, thoughtful, young woman. I just wanted to wish you good luck, and say how proud your parents must be of you❤️ you're gonna figure this all out and be just fine!
Was told recently by my primary doctor that my blood work showed Addisons but I have these inner tremor’s do any of you have these?? I am seeing a Rheumatologist next month with hopefully some answers
The stair climbing thing is so weird. I felt like I was 100 years old going up one flight.
I did not have TB. But my adrenals got damaged by sepsis/ septic shock.
It took 10 years of hypo adrenal/ cfs/ ME. Diagnosed by Endo. 10 years of chronic debilitating ill health. Each time i got a virus or covid. I just kept getting worse. I got covid spring 23. And never recovered. Had exactly the same symptoms as you. But GP did not relate all the assorte symptoms together.? I felt so ill lije you for 9 months. Went to GP with nausea. Lack of appetite. Wieght loss. Abdominal pain. Low BP. Severe depression. Emotionally unstable. Unable to cope. Unable to get out of bed. Bowels not working. Constant face / head pain. Utter exhaustion. Zero energy.
Abnormal heart rythems. I looked awfull. And I knew there was something really wrong with me? I knew what hypo adrenal felt like. And when my adrenals are atruggling. I always get pigmentation on my face.? So i went to GP Last August 🎉and asked for a morning cortisol test.? As well as vit D and loads of otger blood tests. The GP said all my bloods were normal???? I see my endo yearly for hashimoto's hypothyroud and cfs/ ME. I saw in in Dec 23. I just burst into tears when i saw him. Told my endo i had felt so ill after covid. I had almost recovered from cfs/ ME. Now i was back to square one. Spent the whole year after covid laying on the sofa. Feeling so ill. And zero energy. Suicidal.? Which i could not understand? It was almost as if my whole personality had changed after covid? My endo took one look at my blood test results done by GP in August. Was clearly not happy. Told me my cortisol was very low. Ordered the SSt. I was diagnosed with Addisons. The same day.!! Put on hydrocortisone. Which sent me hyper. Could not sleep. Finally settled down. And i felt like a normal human being again. I had energy for the first time. Yippee. All my wierd symptoms dissapeard.
When i was first diagnosed with cfs/ ME. I had all the pigmented symptoms of Addisons. My endo did three SSct tests. But i passed all three.? So diagnosed with hypo adrenal... ?
I think my Adrenals were destroyed by sepsis hemmorrage. Then each virus illness i had. I have asthma too. My adrenal function was decreasing. Each illness. Untill covid. Then they just stopped working altogether?
I joined the UK Apsgroup. A brilliant mine of information. As there is litte info from a patients perspective. Living with Addisons.
The articles written by Drs. ? Yes they explain the symptoms. And know the theory. But have not got a clue what its like living with Addisons.
Only us, those who have Addisons know what its like. I am a firm beluever in educating Drs Consultants.
I have got my leaflets from TAPSG uk. For GP. I have made an appointment to discuss with Gp. How all my symptoms were not picked up on. And the fact i was told my cortusol level was fine. When it was very low?
In fact I had a really bad virus in December. I felt like i was going to die. My body started shaking. I was goung into adrenal crisis. But stayed contious.
The fact that through lack of understanding. And not realusing my symptoms were all related to one illness. ? I could have very easily lost my life.?
So i am goung to have a chat. And give information. Tell my story. And ask GP to pass this information onto to all the GP's. So that if another patient has all these set of symptoms? To concider Addisons.
And to maybe update thier training on reading cortisol level blood tests.??
So this will maybe help GP 's to understand the wierd symptoms. And ask why?
I know Addisons is rare. But I only go to the drs if i am ill. ?
More awareness education needs to be out there. For patients and GP's. I am so glad you started this channel lovely Tilly.
Well done you. Keep well Tilly. Big hug❤❤❤
Hello! I appreciate your sharing. I have been wondering if you don't mind me asking... does having the inability to generate cortisol also change the way you feel stress?
Yes .. less cortisol less sound full sleep causes less tolerance of stress
Tilly - did consultants ever explain the link between your TB and the arrival of adrenal insufficiency?
Yes day one we were certain this must have caused it but nothing showed on scans! They now think it must be the cause but no evidence of calcification etc so certainly not fitting the textbook!
When is the next video?
How you been you haven’t post in a year?
Share your Addison’s Disease/Adrenal Insufficiency diagnoses with me below ⤵️ Love hearing from you guys!
hello both adrenal glands removed
how can i contact you
as i m from a small town from india
I’m 44 officially diagnosed with Addison’s disease on 1/18/23. Just getting out of a Addisonial crisis which made me very ill. Taking Hydrocortisone 3 pills per day.
How do you cope with lethargy mines caused by 10 years of steroids so now I’m adrenal insufficient I found out in February recently had another set of tests and I’m still cortisol deficient abdo pain period issues dizziness feeling exhausted regardless of sleep amount walking into door frames exhausted. Constant pain in my legs and arms and migraines and I was told it’s depression and then SAD but it’s not. I don’t know how to cope and relying on caffiene every half hour or I feel exhausted.
I don’t have an Addisons diagnosis my specialist for my lungs says it’s adrenal insufficiency and now have to have steroids but I’m exhausted. I could stay in bed all weekend and feel like I had no sleep at all. It’s getting ridiculous now I can’t find any info to feel better
Hi! ..my mother also a addison patient ..i really afraid about my mothers health ... pls anyone guide me to take proper care of my mother ...
How are you doing now?
It really makes me angry when medical and psychological and medical professionals write physical symptoms off to a mental issue without ruling out all possible medical problems !!! Ugh !
in my country Norway we are 5 million people i read that there is only a little bit more than 1000 addison's damn yeah the sleep is true i sleep 4 to 6 hours and i struggle to fall asleep as quick as my parents : P they fall asleep within 1 hour i can spend up to 3 hours before i fall asleep
I never had the tanning symptom just all the other
My Dr refused to test me because I "dont have hyperpigmentation", although I do have some small areas of it and also read that it wasnt always present. Her other reason was "its extremely rare". I thought to myself, im not surprised its so rare when drs refuse to test anyone for it!
Hi. Just wondering if you can still feel panicked or stressed even if you have low cortisol?
Yes, low cortisol can cause you to feel panicked and stressed, it is your stress hormone so not having enough can affect you emotionally as well.
Yes-I was diagnosed at 2 and have always had anxiety.
That must have been so tough to manage as a child, it’s hard enough as an adult! Sorry to hear that!
may I ask what test was it that you had done for Addison disease?
They do several. One is a salt test in your urine, ACTH is a test that shows your cortisol levels, they can take your blood pressure laying down, sitting up and standing to see if you have orthostatic blood pressure(blood pressure drops from laying to sitting and sitting to standing). There's others but thats the main ones.
@@Flexyourmemes also a ACTH stimulation test, check corisol, ACTH, Dhea, Prolacin, Testosterone levels, check your sodium’s to see if it dropped real low also your blood sugar drops too
@@Flexyourmemes do a mei of your pituitary brain to if you have vision issues because Addison cause that, you get fatigue, pain in legs, tired, forget things lol it a horrid disease
@Ric Sargent Also Aldo/pra ratio, check for both pituitary tumor and adrenal tumor (generally benign but can cause a myriad of issues).
Sounds like your tb is back
Oh my goodness, how old are you?
yeah and its totaly healable in 5 or 6 months
Nope. Once your adrenal glands are not working anymore that's it. They cannot start working again. Before cortisone was discovered, every single person that had it would die from it.
@@surlespasdondine i dont agree coffee did lot of damage and causing weaker adrenals but this here its a infection , plus if it was genetic weakness it would still be healable but take more time like 1 year or 2 if you know what you are doing
@@surlespasdondine in my experience its auto immune weakness is very easy , the harder is if its genetic but that is other cases not this .. but its true that corticosteroids can weaken them i suggest bovine adrenals since this is auto immune but its a infection of mycoplasma and virus its not genetic
Please can anyone say steroids cause kidney failure in addison patient?..
Anyone have high pottassium ?..
When you go into crisis you have low sodium high potassium