doctor's hand writing on clipboard with text overlay - Undiagnosed Autoimmune Disease: I Traded my Hashimoto's for a Big Fat Undiagnosed Autoimmune Mess!

I Traded My Hashimoto’s for an Undiagnosed Autoimmune Mess!

Anna Living Well with Autoimmune Disease, Undiagnosed Autoimmune Disease 4 Comments

This post was originally titled: I Traded My Hashimoto’s Disease for Lupus Disease – Now What? but has been updated since I received further test results indicating that I actually have something in the Mixed Connective Tissue Disease family, which has yet to be diagnosed.

This is Part 1 of my Undiagnosed Autoimmune series.  The other posts in this series include:

Part 2:  My Big Fat Undiagnosed Autoimmune Mess!  My Symptoms and Test Results

Disclaimer: I am not a doctor and this is not medical advice.  The information in this post cannot be used to treat or diagnose any disease.


woman screaming and pulling her hair with text overlay - Undiagnsed Autoimmune: I Traded my Hashimoto's for a Big Fat Undiagnosed Autoimmune Mess!“Okay, let’s see here… You have Hashimoto’s Disease, Raynaud’s Syndrome, so now we are just waiting for one more thing to pop up.”

She paused, and with her head tilted, peered at me and said “You do know that the likelihood of you developing 3 autoimmune issues is high, right?  We are just waiting for that third… I see signs of Diabetes (Type 1), or perhaps Lupus…”

This was back in 2011, a year after my official diagnosis of Hashimoto’s Disease.  I was a mess, on the verge of tears every time I met with my doctor because she always gave me news like that.  And, it seemed, she always hinted at Lupus.

The threat of Lupus lingered over me for years.  Every time I cheated on my gluten-free diet, I would hear her voice in the back of my head, quiet whispers of “Lupus… Lupus… Lupus… You’re going to get Lupus…”

Why she picked Lupus, I’m not sure.  Aside from Raynaud’s (which is often associated with thyroid deficiency, and eventually went away), I literally had NO symptoms or testing to indicate a future development of the disease.

Four years later, I switched to a new functional medicine doctor and left the haunting thought of Lupus behind.  My progress with Hashimoto’s was going so well, that I thought I was on my path to reversing any and all autoimmune issues – both known and unknown.

But in June of 2018, three months after giving birth to my second child, my blood test results indicated something different.  I tested positive for antinuclear antibodies (ANA), which meant my blood was then tested for an entire cascade of other antibodies…

And whatdyaknow!  There were some Lupus antibodies staring me in the face.

Funny.  This was the same moment I also lowered my Hashimoto’s thyroid antibodies to almost zero – the lowest they have EVER been.

It’s like I traded my Hashimoto’s Disease for Lupus… or something like it.

But, how?  Why?  How did my last doctor KNOW?!  So many questions.

While I wasn’t quite expecting another autoimmune disease, I was expecting something.

In March of 2018, about 15 minutes after I delivered my second baby, my blood pressure tanked and I hemorrhaged, losing a liter of blood.

After what felt like 10 IVs in my arms, loads of drugs to keep my heart rate up and stable, 2 blood transfusions, and the very best sandwich Frank has ever made me, I was recovering well… But I knew that there would be a toll on my autoimmune-prone body from such a traumatic event.

Knowing this, and that my immune system can do some wonky things post-partum, I called my doctor and asked him to order the blood tests he thought were necessary after a blood transfusion.  That testing caught the Lupus-specific antibodies, particularly Anti-dsDNA.

I finally had at least a partial answer as to why I was experiencing all these strange, new symptoms, which you can read more about in this post.

My doctor didn’t seem too concerned, but I was of a different opinion.  Due to my desire for a fresh set of eyes, I met with a new functional medicine doctor.

I filled her in and she said “Well, have you ever heard of the AVISE CTD test?  It’s advanced testing for Lupus, so we will know for sure what we are dealing with.”

(This is why I see multiple doctors… they all have their own tools and tricks.)

After a couple of weeks, she called me up and said…

“So, these are the weirdest test results I’ve ever seen.  You could probably go see a rheumatologist if you’re looking for a definite diagnosis, but I’ll be honest… I don’t know if he’s going to be able to tell you anything.”

My testing included high antibody levels for:

Rheumatoid Arthritis

Systemic Scleroderma 

Lupus (though, these antibodies weren’t as high as they were when I was originally tested, so they were technically considered “negative” for this test)

And of course, my thyroid antibodies, which were still the lowest they have ever been.

But what’s funny is that I also tested negative for multiple antibodies associated with each of these diseases.  So, while I probably tested the most positive for systemic scleroderma, there wasn’t really any definitive, clear diagnosis.

At that point, I officially decided – I am a Big Fat Autoimmune Mess, with some sort of mixed connective tissue disease and concerning levels of antibodies towards my kidneys (anti-dsDNA), lungs (anti-Scl-70), and joints (Anti-MCV).

Hooray! (sarcasm)

I feel like I’m in the big leagues now.

Hashimoto’s is no doubt debilitating.  But this whole situation carries a bunch of new risks that I’ve never had before.

My internal organs are subject to a continuous and degrading autoimmune attack.  Google Systemic Scleroderma, or Lupus, and you’ll definitely see the word “death” more times than you would if you looked up Hashimoto’s.

But let me tell you something…

I’m NOT scared.  Nor sad or disappointed.

Do you know why?

3 Reasons:

First, I have God.  And this is a great reminder that HE is the one that is ultimately in control.

I’m not sure why He allowed me to spiral into this deep abyss of autoimmune-ness but I can tell you that the day I saw those test results, I noticed a feeling deep down in the pit of my stomach… a feeling of… what was that?  Excitement?

I chuckled.  Indeed, it is only God that could possibly give me PASSION and EXCITEMENT for learning how to overcome my chronic widespread pain, debilitating brain fog, and itchy, scaly skin rashes.  It is through that very feeling, that I know this is God’s will for me.

Though I don’t understand it now, there is something He will achieve through me and this situation, as long as I continually surrender to Him.

“We need to suffer patiently not only the burden of being ill, but being ill with a particular illness that God wants for us, among the people that He wants us to be with, and the discomforts that He permits us to experience.” – St. Francis de Sales

Second, while symptoms and types are extremely diverse, I’ve learned that almost every autoimmune disease can improve drastically through the use of functional medicine and lifestyle interventions.

To me, this is nothing new, just something different.

**If you want to know exactly what steps I am taking to battle this undiagnosed autoimmune disease, then subscribe to our members-only toolkit (it’s free!) and you’ll gain access to my personalized healing protocol.  Just sign up below and I’ll send you the link and password to open the toolkit.

Through years of searching and searching for pieces to my Hashimoto’s puzzle, I am already armed with the knowledge (and healthcare team) I need to overcome this chronic illness.

(This is one of the #1 reasons I am such a promoter for becoming your own medical advocate.  When you’re educated and equipped with the right resources, situations like this do not instill fear, but confidence.)

And finally, I know I’m not alone.  Decades ago, Lupus, Scleroderma, RA, Hashimoto’s, Celiac – they were all so uncommon.  The day-to-day journey was lonely and empty.  But these days, it’s different.

Sadly (but to my benefit), there are MANY people in this autoimmune boat with me, both doctors and patients… even my own husband.  And so many of us have discovered that it is possible to manage and live well with autoimmune disease.

We are all fighting the good fight together, learning more about what it takes every day.  There is SO much good that can come from this.  Hopefully, our experiences educate others and put an end to the autoimmune epidemic once and for all.

LIKE THIS POST?  SHARE IT AND SAVE IT TO YOUR FAVORITE PINTEREST BOARD!

woman screaming and pulling her hair with text overlay - Undiagnsed Autoimmune: I Traded my Hashimoto's for a Big Fat Undiagnosed Autoimmune Mess!

Comments 4

  1. You know, I’m pretty sure that we are given these autoimmune issues as a wake up call to fix this whole planet. The things we do will not affect only for the things around us but directly to us also. Since we as human race seem to be really lazy to make any chances if not forced maybe this is one way we are tried to make that change in our lives. I do believe also that only way out is to clean our lives. Sadly the school medicine seems to do it’s bets to hide the symptoms instead of givin real answers. But if enough people make the shift the school medicine has to follow

    1. Post
      Author

      Viivi, you are SO right! I agree with everything you said. We live in a world that places convenience (and profits) above all else, but at what cost? I am glad you see the writing on the wall. Together, I do believe we can change the world… It is unfortunate though that so many of us will get sick before waking up. Thanks for reading!

  2. Wow, this mirrors my situation exactly. I hope in both our cases they eventually find a diagnosis–I know many times it doesn’t change things, but somehow it’s more reassuring to have a label to put on how you are feeling. Thank you for sharing; it helps to know that others are feeling the same things I am and facing the same struggles with a concrete diagnosis. Sending you words of encouragement and wishing you the best!

    1. Post
      Author

      Elisa, thank you! It really seems that there are many people in our boat. We are definitely not alone. I agree that it would be nice to finally say to people “I have this disease…” rather than fumbling for words to explain what’s going on. Thank you so much for reading and leaving a comment, Elisa! I wish you the best as well on your autoimmune journey.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.