I Have Autoimmune Hepatitis (AIH)!
Вставка
- Опубліковано 8 лют 2025
- Not a surprise, but it's true -- I finally got my autoimmune hepatitis diagnosis! My liver values would put me as someone with moderate AIH, so the next steps aren't necessarily as clear. There is relatively standard treatment for this disease, but my body had a heck of a time with steroids in the last two years.
So... it's referral time! I'm a little too excited about going to a liver center, but here we are!
I just found your videos looking for videos on liver biopsies since I was recently referred to a GI for possible AIH. I am a very anxious person and suffer from health anxiety so this whole thing is terrifying. Your videos are so helpful to me. You explain everything so well and in such an informed manner. I also love how open you are about your anxieties and doubts with the whole process. I'm hoping I don't test positive but if I do I'm glad there are people out here informing on their experiences and making this whole thing less stressful.
Oh my goodness -- you are so very kind. I am so thankful that my little videos have been helpful to you. When I look back on the early ones, wow -- it's been a journey. I hope that you get some answers and can make a plan. As a fellow anxious person, the not-knowing was very hard for me, so I hope you are through that time period soon.
Thank you so much for your videos. I have subscribed. I waited a year of horrible symptoms to be diagnosed with AIH. Mine started 4 months post pregnancy and kept flaring so bad it shut down my gallbladder and I just had to have that removed a month ago, and finally started treatment 4 days ago on azathioprine. I believe mine was caused by early c section I had and my immune system going into over drive. I am super nervous about being on this med and already feel really tired from it. I will continue to watch your videos 📹 for more info. Thank you so much for sharing, so happy your well!. 🙏🙏🙏
Amy, sending you all of my good thoughts that you are able to heal with your new treatment! If you've not checked out all of the info on the AIHA I'd recommend that too. Azathioprine fully put my AIH into remission, so I'm praying it works for you too!
Hi Sarah. I will take your offer to talk about AIH. About to get DX.
if anyone is being put on a lot of steroids PLEASE get a psycologist, they mess with youe mental and phisical health so much so fast
😢
I got tested for this disease today I pray I don’t have this . I took prednisone years ago for my migraines and made me feel awful like I was going faint
Best of luck to you on your journey. I recommend working with a good hepatologist who can offer you other treatment options -- I do not take any steroids and I am in remission! I would also recommend the Autoimmune Hepatitis Association at aihep.org for more resources.
i got diagnosed with this when i was 12 years old and it's just miserable to deal with and i've only been aware that i have it for a year now and it takes getting used to but when you start to get used to it is so much easier to handle
Can you tell me please what's you do it, medicine or Life style please tell about your experience and are you ok now
I have just got the diagnose, don't know what to expect from now. Feel worried and yes, anxious. No surprise coming from an autistic person also diagnosed with anxiety.😢😂🥴
Wishing you all of the best as you go on this journey. I hope you get all of the treatment you need!
I know you mentioned in another video that you had upper right abdomen pain/discomfort. Is that likely from the AIH? I have that pain too...and LC, but no tests show anything and it's getting frustrating. I have always thought it was something liver related because of the area but nothing on tests so far. They say it's 'probably' the LC but I'm like but what if it isn't 😬🤷🏻♀️?
Yeah, my doctor believes it is the AIH, since it wouldn't be located where my intestines are. After the biopsy it hurt in that same spot (under the bra line on the right side) so that's the working theory. I really hope you can get some answers on your pain ❤️
I have AIH diagnosed 9 years ago. My doctor REFUSES to treat, test ect he tells me you dont have it its too rare. I tell him and show him my biopsy results he STILL ignors it. Im having horrible fatigue, so much pain i cant walk more than 10 steps very slowly, i have welps and rash all over my body and my lower stomach is killing me. How can i get help? I have medicaid and specialists dont take it!
I am so sorry that you've had such a bad experience with it! I don't have any experience with Medicaid though, so I am not sure how to access the care that way. I was referred to my specialists from a primary care doctor. It really, really sucks when you feel not heard by a doctor :(
Can you not get another doctor?
How were your enzymes alt and ast when you were diagnosed?pls reply
Get a different doctor. You are in a dangerous situation.
Type 2 autoimmine hepatits is any hopd,?
i got diegnosed when i was 10... i am now 16 lol If anyone has any questions about ANYTHING i may be able to help hhaha
I recently got diagnosed, and was wondering if there is anything that personally helped you with nausea besides medication like a diet or something you noticed that triggered a flare up?
@@angelaishkova2237 you could asked to be checked for colitis :) but I used to feel that was with the steroids but I got put on “Lanzoprazol” which helps with acidity and stuff. But you should definitely ask because you shouldn’t be feeling like that 24/7
Hey
my mother has autoimmune hepatitis.. But we don’t know much about it..not even the doctors in my country..can you please tell me more about it?
How r u now ?my son diagnosed with autoimmune hepatitis type 2 .do u goto remission without medication plzz reply
@@bushraahmed3719 I have always gotten way worse when I would forget to take tablets for a long period of time
Did I miss the part where your doctors discussed diet, fasting and herbs that support the liver and immune system to heal?
It's important for everyone to find what's best for them! I'm sticking with evidence-based medicine.
Yes FOOD is medicine !
Hey, I was diagnosed AIH, 1 week ago. What antibodies did your test show? I don't think I can get a biopsy, because i'm asian, the health sector has not developed sufficiently.
Please help me by answering my questions. Thank you.
I'm just a regular lady and not a doctor, so it's probably worth talking with your doctor again. I did have a positive ANA test, which correlates with autoimmune activity but is not a diagnosis. As far as what is needed for an AIH diagnosis, I'm sure it varies across doctors, insurances, and probably countries, and I just have experience with a small part of the American healthcare system. In my case they would not finalize my diagnosis without the liver biopsy, but again, that's a question for a doctor. I hope you get the support you need!
@@SarahCarr Okey, Thank you for sharing your experience. Have a good day.
Hey...my mother was also diagnosed with aih 5months ago...we were diagnosed by biopsy at institute of liver and biliary science (ILBS) located at Delhi, India...it is specialised and well known hospital for liver diseases...I thought to help u by these information. Take care
The blood test you should go for is Autoimmune hepatitis panel...but the confirmatory one is liver biopsy itself.
Is autoimmune hepatitis is curable in alopathy.
What's your doctor say its can be cured or only manageable.
There is no known cure for autoimmune hepatitis. It is possible to be in remission/not in active inflammation, but not cured.
Hey my girlfriend has the same condition . It seems like you are very well informed about aih, would you be open to talking to her via email or WhatsApp ? Thanks so much . Blessings to you :)
You are so kind -- I have so much to learn. I'd recommend first joining the AIHA and watching all of their videos -- they have an AIH Bootcamp that was so, so useful. They also have support groups which is where I'm learning so much from folks who have had the disease for decades!
Hi, what were your symptoms?
The only symptom I had was fatigue! It sounds like many, perhaps even up to half of folks, are asymptomatic. We wouldn't have caught it unless the ALT/AST came up high on a blood panel.
@@SarahCarr sorry for the personal questions, but how high were those levels? Thanks ❤️
@@MeretAasiyah Not at all, but I am just a regular person and not a doctor so I am not a good source of medical info :)
Different labs use different reference ranges, so an actual number (eg; 300, 475, 612) doesn't always mean the same thing. The guidelines I heard were between 5x-10x the "normal range" as a signal of liver distress. My ALT was at 3 times the normal range when tested and clicked up to 10 times the normal range. I also learned from my hepatologist that the enzymes will go up and down, so you might have a test at 10x and then, say, 6x, but because they aren't steady that doesn't mean there isn't a problem.
My gastroenterologist wouldn't give me a diagnosis until the liver biopsy results were in-line with my numbers, and then the hepatologist also did a Fibroscan (to check for rigidity of liver tissue).From what I understand they want to see multiple indicators, as liver enzymes can mean other things too. For example, other diseases of the liver can elevate liver enzymes, and many of them, like viral hepatitis, can be ruled out with other blood tests.
I really recommend the AIHA's Boot Camp Video -- it helped me so much! ua-cam.com/video/0b9LkpJOenE/v-deo.html
Does this help, I hope?
@@SarahCarr thanks dear. I’m in process of diagnosis and hope for the best ❤️
@@MeretAasiyah Best of luck -- I hope you get answers!