NEW: My Addison's Disease Journey

lovely accent

None of my doctors believe I'm ill saying it's CFS or in my head 😢

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 !

Oh my goodness, how old are you?

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❤❤❤

Sounds like your tb is back

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

yeah and its totaly healable in 5 or 6 months

When is the next video?

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.

How are you doing now?

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.

The stair climbing thing is so weird. I felt like I was 100 years old going up one flight.

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!!!

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.

Btw: Love your cushions.

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.

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

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.

Please can anyone say steroids cause kidney failure in addison patient?..

Anyone have high pottassium ?..

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!!💝

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.

Hello thinking of you and I hope you are well ❤

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.

How you been you haven’t post in a year?

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.

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.

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

may I ask what test was it that you had done for Addison disease?

I found last week, and you nailed every single symptom, guess what?
I guess I joined the club.

I had a crisis after hospital incompetence in 2006. I was post surgery from Cushing’s and they discharged me without enough medication. They didn’t tell me about adrenal insufficiency. I didn’t know it was a thing and that it was dangerous. I had two subsequent crisis after that because they kept telling me that the remaining adrenal was working and I didn’t need meds. I don’t know what their obsession with taking me off the medication was, but they eventually did it. Lived normally until 2014 when I started having flank pain, low blood pressure and arrhythmia. They sent me home without treatment and pushed the anxiety/depression bullshit on me. We’re now in 2022 and I still can’t get anyone to understand that my adrenal is producing just enough to keep me alive, but not enough to keep me thriving and it’s in failure. As soon as they see the cortisol labs come back within range, they send me home. Lately I’ve been having chest pains. Electrolyte drinks help. But nothing helps the overwhelming excruciating relentless fatigue. I am so tired and my legs hurt so much I want to saw them off!! 🪚

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 ...

Thank you for sharing

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 .♥️🕊♥️

I encourage you to look into the work of Dr. Stephen Cabral - He recovered from addisons disease naturally and is a wonderful resource for healing

Lovely girl ..THANK GOD FOR YOUR MOTHER.....🌼💖🌺🌸

Was diagnosed at 22, it's has been very hard to cope but it's nice to meet other people who are affected

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 .

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..

Thank you for sharing your story Tilly.
I also have addisons disease. I too could not climb stairs. Was diagnosed 24 years ago

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

This video is great, very revealing. Thank you ❣️

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

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

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😻

I never had the tanning symptom just all the other