NEW: My Life-threatening Condition Explained | Adrenal Insufficiency
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- Опубліковано 9 жов 2020
- A few weeks ago I opened up to you guys about my 'Life Behind the Lens' of 'That Oxford Girl' and 'That University Student', revealing that for the last few years I have been in and out of hospital with a life-threatening condition 'Adrenal insufficiency/Addison's Disease'.
In this new video I'm explaining more about adrenal insufficiency, living with an invisible illness and what it means to go into adrenal crisis.
My journey to diagnosis was a long and difficult one which I’ll go into detail on in the future - this is just an overview.
I have been overwhelmed by your messages since my last video, thank you so much!
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hey! im seeing a lot of addisonian people in these comments who have been diagnosed recently :( i am 16 years old and was diagnosed when i was 10 after a long struggle. to anyone who’s recently been diagnosed and feel like its the end of the world: it gets better. trust me. its horrible at times and there is always a looming fear of a crisis around the corner but in the end- i will not let a stupid illness i have no control over ruin me. we are so strong and whatever happens- never stop fighting :)
Your awesome thank you for sharing
So sorry you have had to deal with that so young. It must be so challenging. Thank you for your kind words, it's a difficult illness to manage but you are right, over time you do learn the signs. I'm making lots more videos on living with Addison's now to raise awareness - would love it if you subscribed!
It's not a stupid illness,it's just something that we have to adapt and overcome with.
I'm in my 30s and was born with Addison's Disease and wasn't diagnosed until the age of 4.
@@Bianca0414 my daughter is diagnosed with adrenal crisis .she's 11 years old ..I am from India please suggest how she can lead a normal life...I am totally shattered don't know what to do
@@PetalspringrainbowBaby steps .
If she's been diagnosed she should already be on medication to treat herself which will lead her to living a normal life.
Is she seeing an endocrinologist to prescribe her medicine in your area ?
Does she have a medical alert bracelet,does she have her medicine?...
If you have the funds , you can order her a medical alert bracelet to wear to have a little peace of mind, just Incase she runs into a crisis.
If you are certain it's adrenal fatigue and not Addison's Disease.
Treatment
May require
Hydrocortisone (Cortef), prednisone or methylprednisolone to replace cortisol. These hormones are given on a schedule to mimic the normal 24-hour fluctuation of cortisol levels..
Fludrocortisone acetate to replace aldosterone
However, keep in mind that this is not a permanent treatment,it's only until her adrenals heal and then she can stop taking the treatment but you have to do your research.
It's curable but when to stop is between the child, you and the doctor..
In the past Tuberculosis deposited inside the adrenal glands via the blood stream and then destroying the adrenal glands, was a very common cause of Addison's Disease. But it can be auto-immune, where your own antibodies attack the adrenals damaging cells within the gland and gradually the weakness, increased pigmentation - a 'suntan' that lasts longer than your friends' suntans, the dark line of the gums at the base of your teeth and in the creases of the palms of your hands - which is odd - even into February, so they become jealous of you, sets in. Your exhaustion, you falling asleep on the settee when watching the TV and sleeping through to next day i.e. 'failure' to be there for your spouse in the night and perform your obligation in your relationship, particularly when all your routine blood test are normal, causes your partner to question where you still love her. Only in crisis do you drop your sodium in your blood, with the drop in blood pressure as you stand from sitting, clenches the diagnosis. The very gradual onset of the condition, as more and more of the gland is destroyed, makes the diagnosis difficult to catch early. Then finally, the sodium in your blood is low, hyponatraemia, the sickness sets in - 'butterfies' in my tummy. You have cried 'wolf' so many times, so people around you do not believe, that you are indeed ill. So many doctors that you have seen, all saying "I cannot find anything wrong with you, so try some antidepressant" you start to believe them. But when the one you love, threatens to divorce you, you fight hard to get the answer that will keep your relationship together. The headaches are part of low sodium, causing swelling of the brain tissues, within a confining rigid bony skull. Environmental toxins you accidently were exposed to could also be a cause. Wikipedia is a good 'man off the street' read for answers. Google Scholar and PubMed provide research papers to the public.
You just summed my experience with Addisons as well ... though they had a hard time with mine because when they send you home with anti depressants they make you feel like its in your head so you push yourself harder which makes you sicker and simply people just don't believe your sick because you look healthy with this beautiful tan ... by the time my acth was tested it was over 3500 more then 100 times what it should have been ... until they saw miy gums and how fast my body started having issues ... now have dystomia and to that they say many things can cause dystonia mine was so bad my body wouldnt stop moving arms legs jaw head face all moving and can't control it
It changed my life drastically I still have issues getting steroids right my body over reacts to everything now . 3 meds later to help control movements I am feeling more normal as long as I am not stressed ... for me stress can be just leaving my house ... and double stress having to go into a store where there are people to see me ... fightimg weight can't loose now ... well it is overwhelming to live it but I am so thankful I am alive and get to see my kids and grands grow up 4 beutiful kids and 4 grands so far they are what keep me fighting .
Thank you Dr Bilas, your info is very helpful.
@@tameraduncan8796 Hi Tamera, I've got Addison's and want to know what type of medication did you use to control movement?
I've experience the same as you. We don't have a Endocrinologist in our country I'm treated by a nice and wise Internist sins my diagnose.
Send you Love, Light and Peace!🦋
I was wondering why my head and neck were killing me....the missing salt...thank you...
Dehydration is the biggest factor for me. Someone with Addison's said it is a constant state of dehydration. And I have found I need the extra salt.
Addison’s does not cause a constant state of dehydration. Do you have a source for that? If you are properly medicated on fludrocortisone, you should not be dehydrated.
Yes so true! I have a video about symptoms/diagnosis coming next week and salt cravings are often a big one patients notice x
This comment section helps me feel less alone and validated 🤍🤍
Really pleased to hear that. I hope you find the videos helpful. I'm making lots more, so would love it if you subscribed!
I had a very similar situation as you in terms of adrenal crisis at night - I would wake around 3 am with low blood sugars (in the 30s!) every night - first they gave me prednisone 1mg at bedtime and that helped, but then I found a doc who would help me with a pump and I finally slept through the night for the first time in many years. It took so long to get diagnosed, and then so long to get decent treatment...I have been on the pump now for almost 10 years and have finished multiple university degrees - so glad to see you got a pump and that you are doing as well as you can!
For months I had been deteriorating, wrenching, dizziness, sick confused tired low energy, had toners of tests got so bad with pottasium 4 weeks ago went into hospital released next day no diagnosis, last Thursday night went in again with adrenal crisis its a shame it got to that stage before they could diagnose but grateful for everything the NHS did for me, videos like this well help educate others I hope you find a better solution for you to be at ease.
Sorry for only just replying to this. Haven't used UA-cam for ages but back making regular videos now! Sorry to hear you also had a tough diagnosis journey, it's so sad how many patients end up in crisis before being diagnosed. I'm making lots of videos on Addison's now, I hope you will find them helpful!
What was the caused
@@ThatTillyRose how does a crisis feel
You are very sweet , I am a med student I was reading about this condition and wanted to watch someone with condition on UA-cam and I found you , I wish you best And good luck ❤
Thank you that is very kind of you to say. It is so often missed by doctors and I’ve often been in a&e and they’ve said ‘oh she’s just got a sickness bug’ when I start throwing up and I’m actually going into crisis, so more awareness is definitely needed! Thank you for looking it up!
I’ve been diagnosed since 12 months after the finding of a brain tumour while having an adrenal crisis. Still have no one around me that really understands.
They don't because they cant imagine that one person can have so manythings not feel right at the same time . I never realized everything your adrenal glands do
I joined a womens AI group and It is so nice to know your not the only one ... and your not crazy 😂😊👍
Same here! I take prednisone daily but still feel unwell. It’s difficult to find a doctor with experience treating this disease.
Are you better now ?
Wow girly.. Addison’s is so uncommon I feel like people will never physically understand. But we are all WARRIORS💙💙🦋🦋
I was diagnosed with AI in October 2020 and they thought it was depression and anxiety for the longest time and even prescribed antidepressants. I just knew there was more than that but not sure what. Luckily(I say luckily), before diagnosis, I fainted in the bathtub and had my now husband not found me, I would’ve drowned. I spoke to the GP and told them about it and they said let’s just do a blood test. They immediately noticed just how low my cortisol levels were and soon diagnosed me. It’s an interesting disease to have because in my case, I’m lucky enough to be able to live a relatively normal life as long as I take my medication regularly. However, it is extremely terrifying as I do go into adrenal crisis sometimes and so far someone’s always been around to get me stable. I wish all my fellow AI warriors a good life, an an appreciation for what we can do despite what we go through on a daily and sometimes hourly basis.
Thank you Tilly Rose. You are truly brave!!!
I got my diagnosis of Adrenal insufficiency yesterday 💜
What tests did they do to diagnose you? And how did you find out
I’ve just received the test and I’m really scared is it hard to bare? I already suffer from JIA, hyperthyroidism etc and is the pump an optional or is that only for serious cases?
@@hannahharris2071 @Hannah Harris Hi. I was diagnosed with secondary adrenal insufficiency in January 2017 and had an adrenal crisis 3 days later... they do the ACTH test. It isn't painful or uncomfortable. Very similar to having a blood test. The pump doesn't tend to be a 1st case scenario. I've been asking to have one for over 2yrs now! Steroid tablets tend to be the way forward to start with. If you have any questions, feel free to message me x
@@deltasandvig3504 hi they do an ACTH blood test to see what your cortisol levels are and how low they are. I was diagnosed in January 2017 with secondary adrenal insufficiency so I've got experience 1st hand x
@@erasier9189 I’ve had all the testing etc, but my medical team knows very well I can’t handle tablets I become violently sick so I’m already on needles for majority of my other medical diagnoses, is tablets the only other option? As the doctors gave us a run through of options and he did mention the pump as an idea for me as I am only 13 still but thank you 😊
Thank you for sharing your story! It means a lot that you are raising awareness of chronic illnesses too... I really hope your adrenal insufficiency can be better controlled soon xxx
Thank you so much for your lovely message 💙 Really pleased you found the video useful!
Thank you for making this video. Good to get the word out there. Adrenal insufficiency is one of my many issues. Most people don’t understand.
Thank you so much. So sorry to hear you have AI too, it's really not the dream and there is little awareness, you are right. I'm making lots more videos on living with Addison's now to raise awareness - would love it if you subscribed!
That Tilly Rose - Sure thing.... I've subscribed with alerts activated. Looking forward to checking out more contact.
You lose a lot of sodium, try having a lot of salt + non-fortified nutritional yeast in some water in the morning (tastes like yummy chicken broth). That's been helping me a ton. Also try Drenamin to support the adrenals.
My lab tests show normal salt but I have the symptoms
Yes salt is so important!
I’m struggling with Addison’s…. Sleeping far far too much, not interested in getting up, vomiting with no warning,no appetite whatsoever and can go 3-4 days without food but living on coffee, zero interest in life
Steroids do not agree with me even tho I have to take them for the rest of my life
I hate it and would love to be the happy self I used to be
If you are vomitting and lethargic, + sleeping a lot, your dose is too low.
You’re so strong!!!! Don’t ever give up!! I get what going into a crisis is like but just think Hakuna Matata and there’s people around you, not just your friends and family but people like me, thank you for sharing your story💜💜💜💜💜💜
Thank you so much for your lovely message and positive words 🙌
Your so strong !!!❤
Absolute warrior! Strangely enough, when I was first diagnosed with Addisons in hospital and they were trying to find a cause, they asked if I ever had Tuberculosis, apparently there's a correlation.
Thank you so much! Yes there is a strong connection with Tuberculosis, they now believe that has caused mine. Sorry you are living with it too, it's a tough illness to manage. I've started making lots more regular videos on Addison's now, would love it if you subscribed. Hope you will find them helpful!
Thank you for posting this, my teen age daughter is in the icu and they think that she might have this. They are running tests in the morning for a diagnosis.
You're a champ, keep fighting the good fight Tilly
Keep going Tilly! You are going to get more subscriptions, it will take some time. Keep the faith! Massive respect from me❤️
Thank you so much, really kind of you!
I read somewhere that Tuberculosis can cause Addison's if it damages the adrenal glands.
Thanks for the video. I'm preparing myself for anything and everything.😊
Thank you for sharing your story this just makes me, even more, intrigued to learn more about adrenal insufficiency I am currently in nursing school and decided on this topic however I didn't expect to learn this much. after hearing your story and watching some of your videos I feel more motivated to raise awareness of this chronic condition. Thank you. You are strong! don't give up and stay positive :)
Awareness is huge even the Drs dont know enough about it quite honestly ... I have PAI and no other issues that we know of other than fibromyalgia ,chronic fatigue
Sorry for only just replying to this. Haven't used UA-cam for ages but back making regular videos now! There is very little awareness on Addison's amongst medics and nurses, so it's a brilliant topic to focus on. Thank you for your lovely message. Back to making regular videos now, would love it if you subscribed!
yayyy i have it too and i was diagnosed last november. i had an addisonian crisis and we had never ne i had it before and it was such a surprise and now i share my sotry with other people. i like that
Thank you so much I was diagnosed with Addison's 12/31/2015 I fully understand what your going through bless you ... it has been a whirlwind of a ride I have learned so much from joining a womens AI group ... somehow knowing your not going crazy with whats happening in your body is very freeing . Thanks for sharing
Sorry to hear you have had to cope with this too, it's so tough. I'm glad you have found a supportive group. I'm going to be making lots more videos on Addison's now, would love it if you subscribed! Hope they will be helpful x
I've had Addisons and Hypoparathyroidism since I was 7 (Now 42). My sister has it too.
One of the main things I've learned over that time is you can control it with your mind (to a degree), you can avoid A&E if you just listen to what's going on with yourself, the environments your in etc
With your mind? Please tell me more.
plz tell me in details
I have Addison’s disease as well and I’m so sorry for what you’ve gone through and continue to go through with this. I hope it gets better and soon for you. I’m sure all your doctors have already checked for this but just have to say in my case I also had undiagnosed thyroid issues and I also need to supplement fludrocortisone for lack of aldosterone. Obviously my Addison’s was caused by autoimmune disease which is related to thyroid as well. In developed nations Addisons is caused by autoimmune, in underdeveloped nations it is more common to be caused by tuberculosis. Are you certain TB was the culprit in your case? Really hope things get better for you Tilly! And so glad you are doing okay considering everything you’ve gone through!
Ps. Thanks for speaking out about this 🙏
Sorry for only just replying to this. Haven't used UA-cam for ages but back making regular videos now! Sorry to hear you have Addison's too. It's a tough illness to manage. They still haven't 100% got to the bottom of my cause, I have no signs of autoimmune, they believe it's most likely the TB. Thank you so much for your suggestion. I'm making lots more videos on living with Addison's now to raise awareness - would love it if you subscribed!
@@ThatTillyRose hi Tilly hope you’re doing well. I have subscribed and just want to say again really appreciate your videos and hope you’re doing okay !
Hello,
Thankyou for sharing your story.
May I ask which tests did you get done to get diagnosed?
Thankyou.
Hi Tilly. I just found this video as I was looking to see if there were any new videos on adrenal insufficiency that I could share with my carers. I have secondary adrenal insufficiency & a multitude of other complex health conditions (mainly due to having hypermobile ehlers-danlos syndrome). Firstly, I just wanted to say thank you so much for this video. It will *definitely* be a big help to show to my carers another persons perspective of AI. Secondly, if you are thinking of doing a video regarding disabilities and university... If you are wanting any perspectives from people who have chronic health conditions, who had chronic health conditions whilst navigating through university & who had to apply for disabled students grants & getting help through uni... I'd be more than happy to help you out, in any way I can. I'd love to help to just raise awareness and make other prospective/current disabled students lives easier. Finding out the information on your own can be so daunting. I was the president of the disabled students group at the university of Lincoln before I graduated. If you think I could be of help in anyway, please let me know. Thanks again for raising awareness of our mutual condition. Stay strong, keep safe & well in the pandemic and I truly hope that they find a more suitable program of steroid treatment for you. Just having to use one emergency injection is unpleasant (let alone 4!!). Sending hugs & love from a fellow adrenal insufficiency warrior 💪🏻 xxx
Sorry for only just replying to this. Haven't used UA-cam for ages but back making regular videos now! Thank you so much for your lovely message. So sorry to hear you have AI too, it's incredibly tough to manage but I'm pleased you found this video helpful. I have lots more regular ones on AI now, so would love it if you subscribed! Huge well done for navigating uni, know how tough that can be! x
Thank you for sharing my son is 15 and has been so poorly all his life ended up intubated, and we've almost lost him he's non-verbal so couldn't tell anyone what was wrong finally 2 weeks ago we got the diagnosis the same as you he's still not right he seems to require more steroids to function in the morning.
Its an awful condition and so many doctors have no idea once he had 7 blue light trsnsfers over 6 weeks where he was completely unresponsive still no doctors discovered it thank god your still here and he is. It baffles me from my research I've known he's had this and kept saying it still NOBODY listens. Any advice would ne fab thankyou!! Stay well 🙏
Hi I was born with Addisons disease I'm 50 years old now. It's been rough I've been taking steroids all my life I live in California
That's really tough to have to deal with since birth. Must have been a big challenge as a child. Sorry you've been through that. I'm making lots more videos on AI now to raise awareness, would love it if you subscribed!
Tilly this was great.. Very brave for you to make this. I found out a year ago I had this. Only when I joined a closed facebook group called Adrenal Insuffiency. I have secondary which is SAI. Primary is PAI. This group has alot of professionals as well as info on the site from very important basic sites on upto date valuable information and things you can print off for the hospital and your doctors as well as yourself and family. In 2 weeks writing and reading what is on the Actual site for Adrenal Insuffiency I have learned so much. It will also help you to discover how to get things printed off to educate professionals and yourself and family and friends. I'm starting to feel better about myself. More like I am learning to know what's going on. That is a great feeling. Getting my steroids in more of a regular dosing. I take 25 mlgm a day. 10 early then 5 every 4 hours until gone. Eating healthy and drinking lots of water with gaterade. I'm a vegatarian now. Lactose free. Do protein shakes. Hard boiled eggs help too. Any way that informs me and my doctor. It's little steps that add up to changing my life for the good. This facebook group is priceless. Keep background on white. Rules. I feel like I am finally getting it. Thank God other peoples stories. It's hard having a rare disease.. Hope is it all adding up will help you like it is me. Your almost there honey. I believe I ts coming together. Thank you for sharing. You did a great job. God has a purpose fore you. He wants you to be happy and healthy. xo lisa
Sorry to hear you also suffer from adrenal insufficiency and that you’ve found the group helpful. I’m also part of one which has been really supportive. Just need the medics to work out how to control mine! Thank you for you kind words!
Your amazing , God bless you
Thank you so much!
I’m in testing now✨ Bless your beautiful self ✨💎💜💎✨😘😘
Sorry you are going through that! Hope these videos are useful 🤍
I have adrenal insufficiency too.. i am struggling to manage it, I have mental health issues and a lot of stress in my life, and I feel like I head into crisis so often.. I’m on 25 mg cortisol a day, but I feel like my body uses it up so quickly..
I have so many other physical illnesses, and this took years like you, for me to get diagnosed, I don’t understand why they don’t test this routinely! Luckily I saw a rhumetologist, and he found it, but I felt half dead by then.
The adrenal insufficiency was triggered by a horrific negligence in 2011 when mybowel perforated, and a and e saw my mental health diagnosis. And wrote me off as attention seeking, they spent 5 days trying to discharge me while my friends fought for me to stay in and I got iller. I knew I was dying but they refused to believe me, wouldn’t scan me, it was too traumatic to put into words. On day 5 I vomited faeces and they finally realised and ran me 8nto theatre to take half my bowel out. Give me a colostomy and stick me in a coma in icu, where I fought for my life with septic shock for weeks.
I miraculously survived, was given 0 chance, and they told my firmeds to say goodbye..
I was in hospital for 31/2 m9nths, it’s given me severe ptsd, and a phobia and mistrust of hospitals and medics, I never recovered, but was told I had,. As I said ,it took years to get the exact of AI.
It’s all been so devestating, and I don’t have a good endocrinologist to help me, they just leave me to it, and I’m so ill with this illness, it is so scary.
I have been refused a cortisol pump. It’s so hard to get in uk.
I’m so sorry this happened to you, the healthcare system is very dirty and tragic at times. I hope you can recover and feel better.
@@team.2875 thanks so much ❤️
May God continue to bless you and protect you. He's brought you this far, and He did it for a reason. You will keep finding answers, don't give up! You've been through so much!
Sorry for only just replying to this. Haven't used UA-cam for ages but back making regular videos now! What a horrific time you have had. No wonder you have no trust in the medics, that sounds so scary and no one should be treated like that. Sorry to hear you are going through this. I also require huge doses of cortisol. I think it's a bit of a myth that one size fits all. It's so sad the pump isn't available on the NHS. Prior to the pump, changing my doses so I took cortisol at 4am, 7am, 12pm, 4pm, 7pm helped me, rather than just standard dosing. Sending you lots of good energy x
Are u on fludrocortisone? That helped me to stabilize AI some. Ive also had few crisis, not as bad as u but still as dangerous, also many close calls. Also, highly suggest testing all other hormones 😊
Thank you for getting in touch! I’ve tried fludro but don’t react very well to it. They think I most likely have secondary, as no results have ever shown I need fludro! Sorry to hear you’ve had a horrible time, hope you are more stable now 💙
Thank you Tilly
Can anyone help me with which tests would be best to diagnose as we have have seen two doctors not sure if they are running the best blood tests . It like a nightmare to navigate
Thank you Angelina
I am 54and I have just been to the ER twice in 8 days. They have NO idea what is wrong with me.....but they also do not do the tests in that ER environment.....so of course they have no idea. They treated my like a crazy person......but I kept calm because i know what it is. I have hashimoto's and of couse this is addison....I am going to do the blood test tomorrow. So in a few days I will know for sure. Thanks for this video and all the comments. It is very helpful in not feeling so desperate.
Yours I think is typical of adrenal insufficiency stories. I am 89 but went through very many doctors for so many symptoms before an endocrinologist sorted me out.. when in my 30’s. You always imagine people are thinking you are exaggerating about symptoms because the wrong tests allcome up normal. I ended up 2 months in an endocrine ward luckily. Recently I have been hit with low outputs again and am having to go privately to an endocrinologist because of too long NHS waiting times. My Cortisol levels are verylow at 95. I have anappointment next Friday. I have already seen on NHS specialists in geriatrics, rheumatology, oncology…..same story. I look well! But I canbarely walk partly becaiseof a back injury. I am on 5mg Prednisolone already for about 13 years for pain. I don’t know why I amstill alive!
Well, Wendy, I'm glad you are alive, because you certainly give me hope! I'm 59, and the people in my family all live into their 90s. I've worried that my adrenal & thyroid & autoimmune issues would kill me prematurely--but if you can get to 89, by golly, so can I! You see, I have a very long to-do list, and I intend to compete all my work thoroughly before I leave!!! God bless you!! 👍😃🩷‼️
What a story xxx
I was diagnosed with Addison's when recovering from a shoulder operation. I had a year of feeling great when on the right steroids but the real problem is that it's an autoimmune illness and they rarely exist in isolation - others usually follow. When I just had Addison's I was fine but I now have another one which is worse and two together start aggravating each other. Add to that the fact that the medical community doesn't yet have autoimmune specialists, just the specialists in the part of the body affected in each case, and you have a recipe for long-term problems. It's a massive issue and requires you to do your own research and to direct your GPs and consultants.
Please look into DR. BROOKE GOLDNER on UA-cam. She has a FREE program that gets EACH AND EVERY Autoimmune disease under control. You have to totally change your diet. It really is hardcore. But I do want my life back.....so i do not care if i have to eat raw salads and smoothies for the rest of my life.
She herself was on death's bed age 20....now she is 38 and healed since then.......looking absolutely beautiful and healthy with no markers of autoimmune disease. IF there is any hope for us it ONLY is through a radical diet change and Dr. Goldner is the one person on the planet that shows us how to reverse irreversible disease. I for one ....AM IN.
Tilly did you sweat lots because I have been unbelievably hot to a point I have had two fans on me it’s been crazy. I have also been diagnosed with diabetes. Respiratory failure and now this. I have asthma, 7 years ago I had breast cancer , I have a few other complexed illnesses and it’s all a bit of a nightmare although I do try to stay positive. I was feeling quite low today after this new diagnoses. Thankyou for this video it’s really helped . I have recently started a blog so I’m able to at least write how I feel when going through all these things . Do you have a blog ? Thankyou Tilly ☺️
Rose, I haven’t been tested but I will be on Monday. Stay strong.
How did your test go? I have lots more videos on AI so be sure to subscribe if you are looking for more info!
Have you tried Prednisone? I have been diagnosed for around 24 years. I can relate to you being unwell alot. I spent so many years that way with hydrocortisone and I finally said enough is enough and got an appointment with my internal medicine dr and got my medication switched to prednisone. The difference was night and day. It's worth a try for your health. Thanks for sharing your story Tilly
But prednison is bad for long term
How much prednisolone or Prednisone you take per day? Is it 5 mg ? Are there any alternatives
I take 10 MG.
Corticosteroids (if im saying that right)are all under the same umbrella.
When I was first diagnosed, I was taking hydrocortisone, which wasn't strong enough for me. Prednisone is the strongest, I believe. There are side effects from it. Weight gain water retention, puffy face, etc, but long-term, you can get osteoporosis if not watched carefully.
There are risks, but Prednisone was a life saver for me. Our bodies need these drugs,
One of the most disturbing symptoms that I still live with is like the brain fog feels like dimension sometimes like I'm very forgetful and foggy brained sometimes in the morning. And the hypoglycemic sometimes the blood sugar crash and the energy crash that goes with the adrenaline insufficiency. It's a challenge just living with it but it beats the alternative I suppose
Me too..... the brain fog and forget things
My 8yr old got diagnosed with congenital adrenal hyperplasia last year. Hes had two crisis within 6mths of diagnosis. I find it hard as a parent and even harder cause hes autistic aswell and doesnt feel pain.
My name is lesly and I got diagnosed when I was born and since then I have been taking steroids it’s not easy at all but you have to keep being strong no matter what
That's an incredibly tough diagnosis to manage since birth, I'm so sorry to hear you have had to deal with that. I'm making lots more videos on living with AI now!
Wow. Lesly....you are a hero for all of us around here!
I got diagnosed with adrenal insufficiency 3 months ago , I also have rheumatoid artritis. It’s so hard 😞
Sorry to hear this,
Have 3 apples a day, the malic acid in this will help you.where you have the arthritis massage castor oil, or even full body massage, needs to be applied to cover area and massaged in for just 3 or 4 minutes, this removed calcium deposits which causes the flare up /inflammation etc, try apple cider vinegar 1tbsp 3 times a day
Sorry for only just replying to this. Haven't used UA-cam for ages but back making regular videos now! Incredibly tough diagnosis to receive. Really tough alongside another illness too. How are you getting on now? I'm making lots more videos on living with Addison's now to raise awareness - would love it if you subscribed!
What I do ,and I think is really helpful I get massage but not with anyone because it's dangerous I go with a chiropractor and I explained to him I have adrenal insufficiency so they are more careful , because sadly your bones are going to lose calcium over the years but even when you feel pain try to move a little and be positive, I was diagnosed about 4 years and most of the people don't understand, God bless you girl
I just got diagnosed. I have no idea what I'm doing
I am scheduled for testing this coming Friday. I have been dealing with something for years. I have been to every doctor imaginable. I have had many ambulance rides. Been diagnosed with seizures. Then those tests were inconclusive. I have been to cardiology. I have been to blood doctors. Nobody has been able to figure out anything. This last January I got covid. My passing out attacks went from a few a year to a few a day. They sent me to a psychiatrist thinking I had some kind of anxiety issue. The psychiatrist believes it’s a neurology issue. The neurologist thinks it’s a cardiology issue. It’s just a viscous cycle of tests for over ten years now. This is the first time I’m going to have an adrenal deficiency test done. I hope that they can at least find something so I finally have answers. At first it wasn’t very scary. It was like oh I just passed out again. The more and more it happens. The more I feel like I will not wake up the next time. So now I am having anxiety on top of it which makes it worse and more frequent. I have a daughter that is passing out as well. I am scared for both of us. Her more than me because she is my kid. I feel responsible for her being in this situation.
I am currently being tested for it, all the symptoms I've heard on these stories about adrenal insufficiency sounds exactly like my current situation. I've had dizziness, brain fog, and fatigue since last November when I went to the er where they said I had a panic attack. I've been trying to figure it out for the longest time and been passed from doctor to doctor. My pcp has said it's just anxiety. The endo has just got the results back on my 8am cortisol test today and we are scheduling a stim test to check. After this many months I just want to know what's wrong and I'm hoping this gets a clearer picture. Don't get me wrong no one wants a lifelong disease but I'll be so happy to know what it is and to validate my symptoms arent in my head.
Hello, have you gotten a diagnosis yet? Please answer
@@blackpinkanalyzer3419 I did not yet. They ruled out addisons which is good, but I'm still stuck at square one. I'm have had two doctors recently tell me it seems like a Neuro problem though and that the neurologist I saw didn't do their job appropriately. Crossing my fingers for an answer.
@@TiredTimelord hope you find the answers soon
@@devinpeirce7152 7 months in and no answers. I'm starting to lean towards Chronic Fatigue Syndrome. I'm currently seeing a rheumatologist and a Neurologist. I sit on the computer alot so when you replied it popped up. I appreciate the random support.
Totally understand, when you have ongoing symptoms with no explanation, it is incredibly tough. I have a video coming on my diagnosis journey next week. Hope you got to the bottom of this x
I almost had my 3rd Adrenal Crisis after eating some bad school lunch. They don’t serve that specific food anymore which is good, but the school lunch situation needs to be fixed. I have Secondary Adrenal Insufficiency, so it’s not as bad as the normal one. I have a condition called Optic Nerve Hypoplasia, which is a condition that affects my vision. Due to my Insufficiency, I’ve been kicked out of (luckily just one) program that would’ve greatly helped me learn about living life as a person with a visually impairment. Since it’s currently pretty late where I live, I’m going to leave this comment here and will most likely type more tomorrow at some point to explain my experiences so we can hopefully bring awareness.
My bf has optic nerve hypoplasia!
Cool!
You mentioned about having headaches What kind of headaches , what area on the head?
Hi ^ I have addison too. My question is the you take good vitamins too help feel better? The you do especial diet? I'm new and all this 😔 I wanne do the best for my new body😬
I'll be sure to do a video on this but it's important to take Vitamin D, Calcium and most patients require lots of salt!
I also have Addison's and are struggling nearly a year after diagnosis. How did your get the pump?.... You are lucky to have one. I've looked into it privately but I can't afford it ☹️. Thank you
So sorry to hear that. I feel so many patients are told to take the steroids and they’ll be able to live a normal life but sadly that doesn’t seem to be the case. Unfortunately the pump isn’t yet available on the NHS, I’m under a research trial at the London Clinic. Another option to speak to your endocrinologists about is doing a steroid metabolism test to see how quickly you are metabolising the steroids as some patients eats them up too fast so need more of it could be you are not absorbing properly which a day curve should show. I know as an alternative to the pump, some patients give sub cutaneous injections to absorb better than tablets. Definitely worth discussing these! Sorry you are going through a tough time 💙
Are you sure the TB is resolved as it is a cause of Addison's disease ? Bless you, I cannot balance mine either and only felt able to stand up and not be so week with Prednisolone rather than hysrocortisone but that gives me look and symptoms of Cushings disease. This illness is terrible and as you are so young it is tragic. I am still looking for answers after many years.
Sadly I am now back on TB meds and you are right, they think it has probably caused my AI. Sorry to hear you are struggling too. Have you looked into the hydrocortisone pump?
I have diagnosed with low cortisol level...was frequently having hypoglycemia but did not know whts causing this...other symptoms, Dizziness, Lack of Energy, and i also have anxiety disorder for past 5 years 😭😒😰
Same.. for years and just got back a low cortisol level screening back .. I'm sweating all the time , headaches, not hungry, so tired etc
@@jordankaye2475 😥😥😥
@@maheensyed8460 did you fix it ?
@@devinpeirce7152 I dont want to take steroids ...so M not taking any treatment....😒
@@maheensyed8460 oh wow isn’t that dangerous for your health ?
Tuberculosis can go to organs other than the lungs. I read a medical article speculating on why George Washington was never a father, and he had TB in his digestive tract caught from his brother who died. The speculation was that he had had a bought of testicular TB. What I might suggest is, have a discussion with an infectious disease doctor about the likelihood of the TB having affected your adrenals. Just a thought. God bless!
Thank you for this. Sadly I'm now back on TB treatment and you are right, they do think it is probably the cause of my AI!
Diagnosing of AI is far more difficult than the management of it. I was treated for a variety of medical conditions for years running the gamut from inflammatory bowel condition to psychiatry for mood swings, depression, PTSD, adult ADHD and hyper vigilance, to lack of stamina, always feeling tired to the bone even when getting up in the morning I felt like I hadn't rested at all and where walking up half a dozen steps left me feeling like I'd run a marathon ("you need to exercise more), a 50lb weight gain over a period of 6 months going from 135ibs to 185ibs ("You need to change your diet") .This was over a period of 5 years, being "treated "with mood stabilisers, anti-depressants and cholesterol meds. The cause was only discovered by accident when I had an Xray for possible kidney stones and it showed a large adenoma on my adrenal gland. The tumor was causing an over production of cortisol putting my body into a constant fight or flight response 24/7 which accounted for all my various symptoms and when the gland was removed it was like turning off a tap and everything returned to normal. I managed fine on the remaining gland until it went sideways a couple of years ago, it too had to be removed leaving me with primal adrenal insufficiency.
I have the same condition caused by a pit tumor . I forgot to take my steroids one day and by coincidence I developed an infection. I felt like I was poisoned, m y body was doling things that should not be discussed if you know what I mean. This was a saturday; my next memory was being tied down to a bed in the ICU after losing 4 days. Have you ever looked into a condition hypoaldosteronism? If you have one there is a good chance you have the other. It can explain why you need so much cortef. Write back I would like to know how it turns out.
Are there any alternatives to prednisolone or steroids? Steroid does not seem to cure. There are about dozen supplements suggested by many experts i found on web to increase cortisol. Taking past 40 days about twelve supplements but my sinusitis is now acute rhinitis. I feel miserable
They have just found I have very low cortisol, they think I have this.....but they need to do more test.....would their be any other reason my cortisol would be that low? I wish u all the best
Hope you got to the bottom of this! Definitely worth looking into Addison's if cortisol is low
How can you get secondary AI can you get it from pregnancy?
I went thru specialist after specialist for years. It took a GYNECOLOGIST to order the right tests and helped me get diagnosed. I was slowly melting away, losing hair like a cancer patient and my doctor said perhaps nothing was wrong with me asked me “ are you depressed?”
Do you remember what tests to ask for ? As I’m being ignored and given ecg and diabetic testing
Fortunate that I’ve only had one full blown crisis. I really don’t want another. Vomiting, dehydration, low blood pressure (55/40), hypovolemic shock, loss of consciousness. All brought on by a chest infection.
I’m not even sure if you read these comments anymore since the video is so old. Hopefully you read my previous comment and let me know if this is how you were feeling before you found out. Thank you for sharing
I had coronavirus in May, with lots of complications, which made my morning cortisol to keep dropping. When I ended up to get it tested, my cortisol was 83 twice less than minimum of 160. Main symptoms are : nausea, extreme weekness, low or no appetite, gi issues, low grade fever, headaches, dizziness. Not sure if it's cortisol related? I'm on 15 mg a day of hydrocortisone till my next endocrinologist appointment in December, when they will finally rulle out the cortisol stym. test
Another cortisol test showed my morning cortisol was 49 nmoll/l
I’m so sorry to hear you’ve had a tough time. They are symptoms of adrenal insufficiency but I’m obviously not a doctor, so can only talk from personal experience. Good to are taking steroid in the meantime to cover you and really hope they get to the bottom of it and help you to feel better soon 🤍
Thank you 😊
They still can't figure out the reason. The cortisol is still not stable despite of the pills. Maybe cortisol injections are more efficient. I assume I have secondary adrenal insufficiency, but not sure why
My struggles are very similar to yours. Many doctors, no diagnosis, nothing specific, many blood tests. Stay strong , Tilly
@@vioricaias8245 I was also diagnosed with Secondary AI after having Covid in March. Still also struggling on the pills, after trying different doses. Been hospitalized 15 times in a year. It's been a rough year.
Thank you for sharing with us. Im a Brain Cancer survivor and radiation killed my pituitary and i also have hypothyroidism. Im not satisfied and not sure that my doctor is helping me fully. Im only on 7.5 mg of predisone in the am. Im always tired to exhausted after i do basic stuff like yard work. I go lay in the bed and crash afterward. My mood is so low i just am exhausted of it all. I want to stop my meds and go into a coma and leave this world. No one i try to date understands me.. 7years alone now and single. Its okay but this sucks the most the loneliness. Shoud i get a new ENDOCRINOLOGIST?? Ive written tonight my will. Ive reached out to a psychologist for more supporting help. Is 7.5 mg of predisone sufficient for treatment off secondary Adrinal insufficiency? Doctor says yes. I was on 5 mg but i myself started taking the 7.5 not the doctor's orders. She okays the dose. Please someone who understands reach out and im needing advice from those who understand. Tha k you again. Glad your all mostly doing well.
Yes, I take oral medication…. without which I will become at high risk of death. Nobody helps in A&E when I’m sick. I’m young, look healthy, and don’t get taken seriously.
I have enzyme deficiency variant of AI. Good video
All the Dr. s would change my medicine send me home and say good luck. I hope you get better!!!
Isn't addison's disease very rare? I keep worrying about this condition too because I also have hypothyroidism and have heard that if you have one autoimmune disease you are at risk of others. Does it only affect 1 in every 100,000 people? having health anxiety doesn't help my panic too ugh. 😢
It is very rare but it's important not to panic about all the conditions you *could* have, unless you have the physical symptoms, then of course worth bringing up with medics. My advice would be focus on controlling what you know about. Lots of people have hypothyroidism but the majority don't also have Addison's x
Same here it’s terrible
I have Empty Sella Syndrome which means my pituitary gland is not there this has affected my adrenal glands and have to take Hydrocortisone
I've read about this. Sorry to hear you are going through this. I hope taking the cortisol has helped you to get your life back. I have lots more videos on AI, would love it if you subscribed!
Did you possibly have missed periods? I haven’t had mine in 3 years and have super high prolactin levels. I didn’t have a pituitary tumor though so they just told me they didn’t know. I read online this can be a symptom of it. I’ve also had migraines since I was 11. I also had cat scratch fever when I was 2 so I test positive for TB. I also went through a phase where I threw up everyday up to 30 times a day. I’m at a loss now as to what’s wrong
Sorry to hear you have been through all of this. Are they testing you for Addison's?
Where did you get this medicine i need it plz help
If you got addison youll have to go to hospital
I have adrenal insufficiency
I’m being investigated I keep getting a feeling like something stepped on my chest too
Was diagnosed in oct 2018 I tend to go into crisis at night so I’m different than most Addison patients
That means you’re not absorbing your meds properly. You need to get a day curve test done to see what your levels are during the day. You should also have HC in your system all day and night, this is how the normal healthy body works. You should never have 0 cortisol. Look up circadian dosing.
@@hollydaugherty2620 I take a longer action steroid now called prednisone and since taking it no more crisis at night
Her adrenal Insufficiency (AI) is caused by her tuberculosis. That is a known cause of AI. Mine is caused by hypopituitarism due to a hypopituitary microadenoma (small benign tumor) . Took 2 5 yrs to get diagnosed with adrenal Insufficiency since most Drs only know symptoms of Addisons. Addison is Primary adrenal Insufficiency because the problem is the adrenal glands themselves, often autoimmune or damage to adrenal glands. Secondary is what I have and is caused by pituitary that doesnt make ACTH which is the hormone that tells adrenal glands to make Cortisol. Addison symptoms include weight loss and darkening of skin. But with hypopituitarism causing Secondary Adrenal Insufficiency you don't get darkening of the skin and weigh gain is typical, often massive l weight gain in my case over 70lbs. This is because when ACTH is low so is MSH which controls appetite and pigment and other things. In primary adrenal insufficiency (aka addisons) they can't make cortisol but pituitary is still making ACTH, IN EXCESS to try and get the adrenal glands to respond but they can't. So Excess ACTH means also excess MSH which kills the appetite and darkens the skin. JFK had primary (addisons) so if you look at pics before he was diagnosed (while running for president) he is awfully tanned/bronzed for a redhead.
I just got diagnosed with adrenal insufficiency. My cortisol level was 0. I have endocrinologist appointment. I know o zero about this shit.
I’ve been sick for weeks, getting more and more exhausted.; drs looked at some labs I had done about 2 weeks before the day I spent last week throwing up for a day . Been having issues with constipation and was vomiting and feeling horrible’ Hubby made me take another dose of my steroids and I smoked some cannabis and in about an hour I was so much better so crazy!!!! Can I ask a couple of ?’.s?!?!?! Well…
1. What can the doctor do if your having issues drinking water or staying hydrated? I’m so nauseous I find drinking as a chore my body hates it and idk what to do anymore?!? I try so hard but I’m so nauseous.
2. Same goes for food? What can they do to help me eat? Cannabis helps alot but still the nausea will keep me strapped down nauseous so I can’t even eat for days sometimes at a time. I’m so tired guys, seriously tired AF! Any response would be awesome!!
Did you ever try a gluten and dairy free diet? That could be helpful. Also Alkalyning is something you probably should do. It means eating mostly row vegetables and fruits. But the fastest way to do that is drinking baking soda. Y do it in the morning on an empty stomach, one teaspoon, not heaped, pour half a cup boiling water on the b. s. and ad half a cup of cold water and juice of half a lemon.
I needed to be hydrated through an IV in hospital and also got steroid IV. From that the nausea left very quickly since you are only nauseous from lack of cortisol.
Going through the system isn't fun.
Moreover finding and ,seeing a good endocrinologist is important.
They dont help here in belgium
I received the Moderna vaccine for Covid on 12/29. So far, no side effects or problems!
I took the Pfizer vac & I have adrenal insufficiency. No problems here!
Have you tried a naturopath? Conventional medicine is painfully lacking when it comes to healing folk.
Uuuuuh what do you mean what caused it and what’s going on?
You had/have TB so that is how you lost your adrenal glands.. that’s pretty obvious.
Sincerely,
Anna another Addison’s patient
I hear you! We said this to the medics so many times but there isn't any evidence on scans...! I think it must be the cause, common sense would certainly suggest so! Sorry to hear you are living with Addison's too! x
Did you loose weight?
Did you loose weight
Yes I did. This is quite a typical side effect
Please fast and give your life to obeying Jesus’s commandments also read the torah(first 5 books of the Bible) you really see how God truly is. If your going through this He could be chastening your to less you to repentance. I hope you get better
Heavy metals, fungal overgrowth, Lyme etc so many potential causes