NEW: My Addison's Disease Journey

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.

FAQ:

Who are you?

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!

[srimathisamarakone]

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.

[janetedens]

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.

[K.Stroh_]

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.

[cbass]

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

[DilumHettiarachchi]

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 !!

[elizabethmiller]

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😻

[adamdavis]

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.

[tarotbylouise]

I am sorry it took that long and that many 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!!!

[jaimeeedwards]

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.

[calcifer]

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. ♥️

[gothafloxacin]

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.

[EleanorEvans-grrv]

Thank you for sharing your story. My name is Elly and I live in Milton Keynes and I am currently undergoing tests for adrenal insufficiency, i recently had a blood test to check my cortisol levels which flagged as being low, not dramatically low but below the normal level, i am having a short synacthen test on july the 9th 2024. I have been under an endo consultant/doctor for years due to graves disease, this has since been sorted by thyroidectomy and i am now life dependent on levothyroxine.
The reason i was tested for cortisol is because since december 2019 i have had illness after illness, infection after infection, even just a basic cold turns into a lung infection and takes me 6/8 weeks to recover, sometimes multiple course of antibiotics which have barely any affect. The last infection was 3 months ago, 3 courses of antibiotics, the 3rd alongside prednisolone only then did i start to feel better, but then kicked in coughing, wretching, pain throughout my whole body, loss of appetite, exhaustion, waking up several times a night choking/wretching but rarley vomiting. A couple of weeks ago i had a routine check up with my endo doctor as i am having problems with my T4 levels as they have been elevated for several months and they are trying to find out why, and cannot adjust my levothyroxine until we have pinpointed the issue, this is when she asked if i had ever had my cortisol checked. My levels came back at 168 nmol/L so was instantly recalled in for appointment where she informed me i am now to be checked for adrenal insufficiency, so now i play the waiting game for the next 2/3 weeks until the sst and results. Although the prospect of adrenal insufficiency is not something i relish, just to be able to find a cause of continuous health issues would be welcomed with open arms. For now i take each day as it comes.

[randomartz]

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

[sandrawheeler]

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❤❤❤

[drSJV]

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.

[Notperfecttonya]

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!!

[kirtinair]

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.

[rockNplayer]

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

[pjmorgan]

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.

[JeremyThielman]

took me 8 years to get diagnosed with 2AI. Contrast MRI results showed a micro adenoma on the pituitary for my 39th birthday on 8/23/24. Happy f'ing birthday. Thankful it's small and not pushing on anything else. Thus managing symptoms, but like OP, I have other issues. Hemochromatosis, that leads to similar symptoms but is the bigger problem at the moment. They are trying to figure out why I am over producing blood. I have been doing therapeutic phlebotomies 2x/mo and my hematocrit is still ticking up. Logically, increase to 4x/mo. In the time it takes a normal person to produce 500mL of blood of 8 weeks I am produce it in less than a week.