Autoimmune Diseases and What We Aren't Told

By tanialm

1 min read

Hello all, I am in Australia and until 2019 lived a healthy and active life.

Searching for answers

I have had an underactive thyroid for years (15) or more but have never been told it was Autoimmune related, I then developed an intolerance to gluten (Coeliac disease) again not knowing it was Autoimmune related.
Move forward to April 2019 and I go to the Doctor thinking my thyroid was underactive again to be told "nope," off to see Gastroenterology as my liver levels were high, what did that mean?

Seeking a second opinion

I was diagnosed with Primary Bilinary Cholangitis. Never heard of it, what does it do? Got no answers from the specialist but was put on medication and was asked to come back and see them in a month. I asked for a new specialist as the answers I got from this one did not sit well with me and I did some research and the disease was horrific to me. Moving on from this, my new specialist is fantastic and I am being well looked after.

"We think you have lupus"

In 2022 I went back to Doctor thinking again of thyroid or liver issues, but "NO, we think you have Lupus"; November 2022 I went to a Rheumatologist and was put on Plaquenil for Lupus, and here we are today with 4 Autoimmune diseases and absolute hate for my body and system as I try to process and function. I am mentally, emotionally, and physically exhausted most days and I am trying to work full time and renovate a house and pretend that life is great, and I am happy. I am not, and it is bloody hard.

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Racquel H. Dozier Moderator & Contributor
Tanialm I am so sorry you have been through so much. It's so hard to deal with so many things at once. Is there someone you an talk it out with? We are here to support you. I know it can be so overwhelming. Do you have support at home? ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member
tanialm Member
Good morning, thank you for your comment. Yes it is hard and has been hard and I am still coming to terms with it all. Hardest part is I have the markers but minimal symptoms so am not looking forward to being told it may not be Lupus even though the medication is working. I still have flare ups like this week but I have had massive stress on me this month so have not been sleeping, eating or relaxing well. I have people around me but I dont burden them with this as it is not something they understand. Thank you again for commenting 😀
1. GabbyFormica Community Admin
 <inline-mention username="tanialm" user-id="6904550"/>, Lupus looks differently on everyone! So many people living with lupus don't experience all of the associated symptoms. I hope your team can see that the medication is helping you and take your concerns seriously! You know your body best. Gabby (team member)
tanialm Member
Thank you Gabby, agree and definately feel better on the medication, still have flare ups unfortunately but that is more stress related.
CommunityMember7007057 Member
I'm so sorry that you are going thru this. I was diagnosed with Lupus in early 2021. My liver enzymes were out of range, He suspected PBC. My blood tests were inconclusive so I had to have a liver biopsy done (which was a disaster) & was told that was my diagnosis. I felt like it was an instant death sentence. Well I went for my appointment in March 2023 & my Dr. now wants me to get a 2nd opinion. He's doubting my diagnosis & he's thinking its just the Lupus now & not PBC. I hope I don't have this awful disease, but now the wait is on again. 
1. GabbyFormica Community Admin
 <inline-mention username="CommunityMember7007057" user-id="7007057"/>, The waiting game is exhausting emotionally. I hope you are able to get some real clarity soon so you can get on a treatment plan that works for you! Gabby (team member)
tanialm Member
I have the PBC under control, I actually got a good report from my specialist 3 weeks ago. My Liver Enzymes are back in normal range which has taken me 2 years to get there I too had the biopsy which confirmed the PBC, I slip up every now and then and have a drink and then regret it for the next week, but changing my life to stay healthy has worked for me. I think the worst part for me is the unknown and being told years later that when you have one autoimmune you are likely to get more. I am currently at the point where I have enough and I just want it to end. I can see how people get down and feel there is no hope.
1. GabbyFormica Community Admin
 <inline-mention username="tanialm" user-id="6904550"/>, We hear you. Lupus is a lot to manage on its own, but when you add more diagnoses to the equation its even more overwhelming. I hope there is some comfort in knowing you are not alone. Sending gentle hugs to you, Gabby (team member) 
2. Sheila Member
 <inline-mention username="tanialm" user-id="6904550"/> my experience with Lupus includes Sjogrens, Jaccards, and CKD (under control). But they aren't always with me, except Sjogrens. There are actually short periods of times that you will forget you even have Lupus. I call it light in the middle of the tunnel. 😇
Beaugeste Member
I really feel for all of you. I'm in bed now crying with exhaustion. It's been relentless for two and a half months. I try so hard to be positive but today I feel broken. It's been such a hard journey. Keep putting your best foot forward, it is all we can do, even though some days it's hard just to walk! Empathy x
1. Beaugeste Member
 <inline-mention username="Sheila" user-id="4518635"/> Thank you Sheila for such kind words of support. I love the idea of comfy afghans, it reminds me of my hippy days! I'm rattling with vitamins and turning green with salads and have done more affirmations than a Buddhist monk but I think I may be turning a corner. Yay! Have a great weekend 😀
2. Doreen H Community Admin
 <inline-mention username="Beaugeste" user-id="6216874"/>, I just wanted to check in and see how things are going. I hope you had a restful weekend and are continuing to make improvements. I will be keeping you in my thoughts, ~Doreen (Team Member)
David Jeal Member
Thanks for sharing, I only found out in March that in addition to the Celiac Disease, I tested positive for both Lupus and Rheumatoid Arthritis. I have learned more from the Chat Group than I could find online or by myself. Much appreciated 👌😎
1. GabbyFormica Community Admin
 <inline-mention username="CommunityMember18d285" user-id="7001977"/>, Thank you for being a part of our community! The first year of diagnosis can be especially difficult. Let us know if you have any questions or concerns that pop up along the way. Sending gentle hugs to you! Gabby (team member)
David Jeal Member
 Thanks 👌
tanialm Member
Anxiety, overwhelmed, exhaustion have taken on new meaning for me. Like I always have periods of being tired, but this is just next level and to explain it to someone is not even possible. At the moment with all the extra stress I have, I feel like a semi-trailer has reversed over me then run me back over just to make sure they did not miss anything. I have elevated blood clot markers so have had a barrage of tests the past week and just had bloods done now yet again testing for all the same stuff. It hurts my brain. 
1. David Jeal Member
 <inline-mention username="tanialm" user-id="6904550"/> thanks for sharing, I agree with your statement about being hit by a Semi & trailer driving over us continually. I am new to the group, but I am learning so much from ALL of the people sharing 👌🤗
David Jeal Member
For me at the moment, it is a trial and error stage to see what foods and liquids trigger flare ups and I guess that once the roller coaster slows down I should have a better understanding of the do and hell don't 🙅‍♀️🙆‍♀️💁‍♂️ sending gentle hugs and smiles to ALL on this awesome group 👌🤗😎
Brooksidecourt Member
Hi, I have Lupus and Sjogrëns, 19 food allergies and 6 environmental allergies. Having said that, the only prescription I use is for my skin rashes, and because of the heavy duty steroids I try to use it sparingly. I’m treating/managing through nutrition (dos as well as don’ts), supplements and juices. My question is in regards to the bug bites. The severity you mention, is this because you are on meds? Is the immune system down due to chemotherapies, etc., and that is the severe reaction you are discussing? I got 3 bites, one at a time and used a mixture of coconut oil and liquid ivermectin and it cleared them up within hours, which for me was amazing. I usually suffer the itching and ugly effects for weeks (the ugly effects sometimes months). But, I suddenly got 5 at once and the bites aren’t responding as quickly to the ivermectin concoction. It’s day three and the itching is bad (though I’m not scratching them) and the bites are still big. I’m thinking what you posted is due to your meds? (It’s early, I’m still half asleep). I’m just wondering if that’s what you mean, or if I should be more on my guard with these bites. Thank you. And bless all of you. 🙏 May you find your answers to better health. 🫶Brook
1. GabbyFormica Community Admin
 <inline-mention username="Brooksidecourt" user-id="8616579"/>, Uhg that sounds so uncomfortable, I'm sorry you have been dealing with that! One of our patient leaders wrote an article about insect bites and lupus: <a href='https://lupus.net/living/immunity-insects' target='_blank'>https://lupus.net/living/immunity-insects</a> She mentions that lupus medication can impact the severity of bug bites. I hope this article helps, there are some tips towards the end. Sending gentle hugs! Gabby (team member)