Misconceptions of Adrenal Insufficiency|What I wish people knew|Living with Autoimmune diseases|
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- เผยแพร่เมื่อ 29 ก.ค. 2021
- Here is a video of the 10 misconceptions (that I have come across) to do with Adrenal Insufficiency (specifically Secondary AI.) I found this video frustrating to film as it was so personal and I didn't like remembering all the silly things that people have said to me in the past but hopefully it helps raise awareness of this disease and helps people to understand what it is like. I want to support my fellow AI sufferers. That is why I made this video.
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I liked so much what you had to say! I have secondary adrenal insufficiency & my Endocrinologist, my Primary Care doctor, & my husband are very supportive. Friends & family don't understand & unfortunately I have lost friends because of this illness.
I certainly know & can empathize with your symptoms. Many of the symptoms you described I also have. I wish that you & I would be able to be friends & support one another. I wish you all the best & pray that you have more days that are positive & filled with more energy. I can't get out of bed on most days, no matter how much I try. I get up just to go to the bathroom & back to bed😢. There's a lot of brain fog & difficulty concentrating. I have to make lists for everything I need to do. Well, enough of my symptoms. I hope that anyone who suffers from this illness & is reading this will learn to accept their limitations & be kinder with themselves. This illness has taught me a lot about life & myself. May God help all of us who suffer with this disease. My ❤ goes out to you! Rose 🌹
I'm newly diagnosed with secondary adrenal insufficiency and my family & friends don't understand. They think I can just snap out of it. They don't see the days I need to rest to recover from a day's outing. The nights I'm struggling to sleep without interruptions. The vomiting until I'm so weak I've passed out. It took 2 years for me to finally lose it with my Dr. so he would take me seriously. This disease, for me and numerous others, may not seem as serious to people on the outside looking in but it can be debilitating to us. Thank you for posting this. I will be sure to send this video to my family and friends.
What was your ACTH and cortisol levels when you first got diagnosed?
@@LeenaBora I'm not sure about my ATCH level but my Cortisol level was 1.5. they said it should be over 19. Although it still hurts,Im used to the vomiting as it's almost an every day occurrence.
Take care❤
I’m newly diagnosed with Secondary Adrenal Insufficiency and this is probably the best explanation I’ve found thus far! Thank you and blessings to us all. 💜🙏🏽
I’m glad you posted this. I’ve been struggling and starting to think it was just me having these issues. I was thinking the medication wasn’t working right. Because the doctors made it seem like the medication would act just like cortisol and be used in my body as needed. But it’s good to know that this is normal for AI. Everything you said in this video is relatable. Except the fat part. I got fat 😅. But it’s because I have another medication that boosts the corticosteroid side effects. 😩
YEEEESSSSSS! The stress part. People do not realize all of the different stress factors. I had no idea until I developed adrenal insufficiency. Every little thing messed with my body and mind. I even had an issue watching action movies because of the flashing lights and loud noises; before I started medication. I’m a little better now though. But it still effects me, and I’ll have to turn off down the lights and watch a sitcom or something more mellow. Or take a recovery nap lol.
Thank you again for making this video.
I'm so sorry about all the arguing going on around you.
It only makes your stress & symptoms worse. It's a very "bad" situation to be living in.
The illness is bad enough but having to deal with people fighting around you can drive you to insanity. I will pray for you so God can somehow get you away from all this & give you His peace in your heart. So sorry😢. God bless you! 🙏
From someone who deeply understands! 🌹
I completely understand you!!
I have been dealing with it for 17 years ! It’s a struggle! And yes a balance like you said ! You’re not alone I’m there too!
What was your ACTH and cortisol levels when you first got diagnosed?
I’m recently diagnosed with Addison’s and your video really hit home to me. Thank you for posting it! I feel less alone knowing others are out there who understand what we go through. 🦋
So well said. I identify with you. I really enjoy your channel. Keep up the good work.
I am secondary due to steroid use and I can so relate to the things you have said. I also think that doctors don’t even realise the connection between emotional stress and updosing. I have done a lot of holistic healing and I now never have to updose and I am pregnant so have also found your pregnancy vlogs helpful so thank you 🙏🏼 ❤
What was your ACTH and cortisol levels when you first got diagnosed?
I have adrenal insufficiency, and only when I was pregnant, I felt normal and my skin even got light idk why it’s weird
I'm very greatful I came across your video. I believe I'm on the road to having Addisons. my endocrine system as a whole is showing signs of malfunctions however I have too many symptoms that are unique to adrenal issues. I can relate to many of your symptoms and struggles. I hope your doing better and are making good progress with managing your doses and such.
What was your ACTH and cortisol levels when you first got diagnosed?
❤ extremely well explained thanks Glyndon
Great video. Sounds just like me. You are not alone. Thank you for sharing.
Thanks for commenting. :) it’s nice to know there are others out there with same struggles.
Your videos have helped a lot. God bless you for sharing :)
Thank you.
Something I have found as well at times if I had a real high like really happy exciting news I would also crash after this! ❤
Yes ! Excitement or laughing really hard makes me crash too. Sometimes it is worth it though.
I had a Dex test for cortisol and it came back as 1 (4. is low on the scale) today, I had the ATCH testing with BP done before and after the test (and blood draws) I was wondering if or how much your BP changed ? For example, my baseline BP was 99/66 (Before the IV injection) end of the test it was 109/69. So, clearly, it did go up but is this a normal/average/low/high result for ATCH test? If you could toss in your 2 cents it would be greatly appreciated.
Really great video Thankyou for spreading awareness. I seem to sit in the chair all day . I’m not fantastic at communicating with people when it comes to socialising . People seem to leave you behind if you are not like them . I’m not great at leaving the house I am anxious about it and feel safe at home 🏡. At night I have to sleep with a nippy machine to help me breathe due to my respiratory failure . I’ve noticed I’m eating less just recently and almost eating half my dinner. There seems to be some odd things going on just recently. Do you recognise any of these problems? Thankyou for you help Jessica
I started to eat less when I became hyperthyroid.
@@JessicaHearsey that something I need to have checked I think
I have unspecified adrenal insufficiency that's chronic. I had the and still have some hyperpigmentation. Anyhow, so making new friends and explaining can be difficult to get across. Like recently my new friends have said oh I get really tired. Maybe I should get checked. I think I have what you have. I don't wish it on anyone. I'll ask them. Have you ever had your hormones checked and they say no? I'm supposed to be on HR since I had a hysterectomy or partial hysterectomy or I'm supposed to take B12. Tada... I encourage them to go to the doctor
Yes I have Hyponatremia & dehydration
I know you have secondary adrenal insufficiency but what is your original diagnosis ie what's causing the AI, I have an autoimmune disease and always fatigued because of that but recently started with low BP, salt craving, always thirsty, walking round the shopping centre feels like a task and I feel like am going to pass out because I am so exhausted, stairs are a killer my legs are like jelly when I get to the top. I am trying to get answers from my doctors but nothing as yet. I feel a failure at life.
I am in the same boat as you and have been for awhile. I also have Graves. Did you ever get better or a diagnosis?
What type of secondary adrenal insufficiency you were diagnosed with? Was it Sheehan's or Friedrich Waterhouse (destruction of the adrenal glands from an infection)? Was it a tumor? Or was it autoimmune antibodies attacking your ACTH or brain? I just ask because I have a patient who I started on hydrocortisone based off of their symptoms and equivocal cortisol and ACTH labs and they've been doing amazing on it and those two years that they've had of significant nausea, vomiting, fatigue but with insomnia, lack of energy, symptoms of depression have all resolved literally within the first dose and then it's only been 2 weeks. I just haven't yet done the proper brain scans and insulin and cosyntropin blood work because it's such a young patient and I didn't want to delay treatment just to test them because a trial of hydrocortisone is less risky than a trial of not putting the patient on hydocortisone and potentially having them die from an adrenal crisis. However, I am not an endocrinologist and they saw one in the past and weren't diagnosed until I saw them again. I just want to know if I'm missing something autoimmune in the brain because I'm really worried about something like a tumor but the patient isn't show any signs of it.
Mine is definitely autoimmune antibodies.
I wish I had been seen by you . I can barely get out of bed and the endocrinologist did thyroid tests & a random blood cortisol early evening..
What was your ACTH and cortisol levels when you first got diagnosed?
Wish i could consult you
Hi there I’m going back to my Endocrinologist in 3 weeks he only did my cortisol at 17.15 & it was 4.4 nmol (3.5-5.5) should I push for a.m or an ACTH I am exhausted, dizzy , weight loss , dodgy tummy & crave salt
Ask to see sooner and yes definitely push for a.m bloods. Maybe even find new endo. Doctors tend to want to rule out heart problems first. But you definitely sound symptomatic of AI.
What was your ACTH and cortisol levels when you first got diagnosed?
You hit everything right on the spot, you take the words out of my mouth, I can literally finish a sentence before you even finish it yourself it’s amazing. This is Erick, maybe you recognize me from messenger.
Have a good day
Thanks for commenting. I’m glad :) I hope this helps people understand.
How are you going?
Hi Jessica, I hope you’re doing better. Long story short, I was given thyroid medication when I did not need it. This caused all of my cortisol issues. My body began to resist the cortisol and giving my body more was a huge mistake. I’m currently attempting to wean off but you can only imagine how difficult this has been.
@@erickhernandez-vu1gn that sounds horrible. Are you taking cortisol while weaning off thyroid medication? Or are you trying to wean off cortisol?
I was able to wean off the thyroid meds but because I was misdiagnosed for so many months, it caused me serious cortisol issues. That’s why the hydrocortisone never helped, my body is resisting it but I have the exact same symptoms as adrenal insufficiency it’s horrible. The low blood sugars is the worst, eating every 2-3 hours is not enough anymore. Taking it one day at a time, I’m trying to get off the HC. What about you? How are you?
What blood test convinced the Doctors?
I was diagnosed with secondary adrenal insufficiency or hypoadrenalism about 6 weeks ago. Started hydrocortisone and fludrocortisone but to no effect. Still feel awful. The dose was upped and had terrible side effects like significant leg weakness, so went back down to original dose. Getting worried it just ain’t gonna work. Doc said I should have felt better within a week. Anyone else experienced this?
I came across one person who could not tolerate the medication because of allergy or something. It might be something that you are dealing with. You really should be feeling better on the medication. I almost instantly felt better.
@@JessicaHearsey thanks for reply. Yes I remember you saying that in your other video. They said I could try prednisone if it doesn’t work. But then what if that doesn’t work? What then?! I’m starting to feel quite hopeless.
What caused it?
@@monaortiz4484 hi, they are not safe what caused it. They did a CT of the adrenal glands and they were fine. I have a MRU of my pituitary gland next week to check that as my ACTH level was extremely low too, whereas I think with addison’s it’s high? The only thing the doc could think of is that I’ve been using steroid asthma inhalers for most of my life…
@@jampigs is it curable ?
What’s caused your adrenal insufficiency?
Pregnancy I guess.
The whole depression and anxiety thing is especially used on women.
Like they are more gullible and vulnerable.
Back in the day they tried to actually look for causes.
Back in the day they diagnosed women with hysteria. There's a good book about the misogyny in the medical field and how it has poorly aired in diagnosing women properly. It is called Doing Harm, I'd recommend it
Hey Jessica, I hope you realise that the fact that you have a relationship, a family is pretty good, considering you barely have the power to socialise.
Maybe you can make a video on that. How to find a partner, if one is a bit on the weaker side and how to work harmoniously together in a relationship. Just general suggestions would be nice, no need for too much private information, if you don't feel like it.
Wishing you all the best on your journey.
I think that would make a good video. I am very blessed.
I anyone get pregnant with adrenal insufficiency ?
I was undiagnosed but definitely had symptoms for all 3 of my pregnancies.
I just had my 4th baby with this disease. Did you have any specific questions. I know this is rather late…
I couldn’t really relate to these. Perhaps when I was undiagnosed and actively dying, but not when properly dosed according to circadian rhythm dosing.
Interesting. What is the circadian rhythm dosing? Maybe I still don’t have the correct dose or time. I was diagnosed a year and a half ago. How long did it take for you to stabilise?
I am also not well most days. I am taking 20 mg/day split into 3 doses. Fatigue, muscle pain, all the things 😴
@@lisameehan24-7 20mg of Hydrocortisone per day is the minimum physiological dose. According to your symptoms, it sounds like you're being underdosed. Daily stressors such as Comorbidities & daily physical activity should be considered when dosing. Absorption issues may also cause a problem. Speak to your Endo about possibly increasing to 25-35mg (split up into 3-4xs per day).
I wish I was as confident as you about weight. I did fine for about 10 years and then lost the battle. It's stabilized now but I'm heavier and can't lose it like I used to. People who are prone to weight gain and age and gender etc are all factors in this regard. My #11 - The weight messages re adrenal insufficiency are different for each of us, with a wide swing of outcomes. Please don't weight shame.
I hope I am misunderstanding your comment. Are you stating that I am “weight shaming?” Or are you telling people not to weight shame? I am not confident about weight. I just don’t want to make excuses for myself. Just because it is harder doesn’t mean I am going to give up on this battle. I swing a lot. Please don’t assume that I am not struggling with weight. I also have hashimotos and Graves’ disease at the same time which means my weight fluctuates hugely. The point of this video was to state that people shouldn’t tell you, that you are going to gain weight just because you are on steroids. I haven’t reached the 10 year mark with steroids but I have had graves and hashimotos for over 10 years. Weight has been a constant battle for me but I refuse to settle. I have just had my 4th baby and let me tell you. If I can maintain my weight… anyone can. I’m sorry that you are struggling with this but we all are…
Why can't they just understand how their stupid, trivial stressors and fighting effect MY heart, MY body, MY mental health?????? I can't breathe or function when their arguments, etc. start. Augh!!! And I thought the ignorance about my t1 diabetes was bad. SMDH.