Fascinating article on autoimmune disease causing some mental illness

[Innisfree]

Quote

The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.

Her name was April Burrell.

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.

April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality.

“She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.”

It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries reminiscent of a scene from “Awakenings,” the famous book and movie inspired by the awakening of catatonic patients treated by the late neurologist and writer Oliver Sacks.

Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.

 

After months of targeted treatments — and more than two decades trapped in her mind — April woke up.

There shouldn’t be a paywall through this link:
https://wapo.st/3OPBj9J

[Teaching3bears]

23 minutes ago, Innisfree said:

There shouldn’t be a paywall through this link:
https://wapo.st/3OPBj9J

Thank you for posting this!  I wish more research would look into these kind of treatments for severe autism.  Absolutely life-changing!

[Katy]

Psychiatrists have known a small subset of patients (primarily young women) with sudden onset psychosis have an autoimmune trigger for more than 20 years. But they used to think you had to catch and treat this in the first few weeks or irreversible damage would be done to the brain and the patients would be trapped in the psychosis for life. I know someone who specializes in this kind of medicine. I haven’t asked about their research for 20 years but I know it’s ongoing. 

[Harriet Vane]

I have heard similar about Lyme. In fact, a woman our family knows from summer camp had a college roommate whose bipolar diagnosis was reversed and whose psychosis ended when she was treated for Lyme. I am not sure I would have believed it if this were not a family we have known for many years.

[Dmmetler]

I think autoimmune disorders tend to get thought of where they normally present...but usually have far wider effects. And the brain is an organ, too. 

 

My Endo says that having periods of functional anxiety and depression who are able to go off meds after it eases is a pattern often seen in women who eventually have enough thyroid collapse to be diagnosed with Hashimoto's. Because the immune system is attacking, and the thyroid is compensating-but irregularly. So you get sudden anxiety, but are also tired and drained. If the flare eases, the depression/anxiety goes away. The SSRI or whatever meds are helping,but they don't treat the issue, only the symptoms. 

 

I really think most mental health is simply health and can be explained by a physical illness and the immune system reaction to it-but because there can be such a long latency period, it's hard to make that connection. 

 

[Pawz4me]

4 minutes ago, Dmmetler said:

My Endo says that having periods of functional anxiety and depression who are able to go off meds after it eases is a pattern often seen in women who eventually have enough thyroid collapse to be diagnosed with Hashimoto's.

 

*raises hand*

[Spryte]

1 hour ago, Harriet Vane said:

I have heard similar about Lyme. In fact, a woman our family knows from summer camp had a college roommate whose bipolar diagnosis was reversed and whose psychosis ended when she was treated for Lyme. I am not sure I would have believed it if this were not a family we have known for many years.

 

There is a co-infection of Lyme, Bartonellosis, that often can cause mental illness, psychosis, Bipolar, and a slew of similar diagnoses in teens and young adults. It’s often accompanied by a rash that looks like stretch marks, but doesn’t always conform to the normal patterns of stretch marks. It’s frequently missed because many times teens can develop stretch marks from quick growth. It’s not new, but there was an article about I read recently called, “Swamp Boy,” I think, that explained it well. I will try to link later.

Edited June 1, 2023 by Spryte

[Ellie]

14 hours ago, Dmmetler said:

My Endo says that having periods of functional anxiety and depression who are able to go off meds after it eases is a pattern often seen in women who eventually have enough thyroid collapse to be diagnosed with Hashimoto's. Because the immune system is attacking, and the thyroid is compensating-but irregularly. So you get sudden anxiety, but are also tired and drained. If the flare eases, the depression/anxiety goes away. The SSRI or whatever meds are helping,but they don't treat the issue, only the symptoms. 

 

I really think most mental health is simply health and can be explained by a physical illness and the immune system reaction to it-but because there can be such a long latency period, it's hard to make that connection. 

 

That would be me, although I will *never* be able to go off meds, not ever. Sadly, the only doctor to treat me correctly has moved to a whole other state; I am not sinking into an abyss of hypothyroid, but I haven't yet found a replacement doctor who will treat my symptoms instead of my TSH. ::bangs head on keyboard:: Those of you who know about Spoon Theory will understand when I say that I regularly run out of spoons by 11 a.m. and spend the rest of the day recovering.

Edited June 2, 2023 by Ellie

[Pawz4me]

1 hour ago, Ellie said:

That would be me, although I will *never* be able to go off meds, not ever. Sadly, the only doctor to treat me correctly has moved to a whole other state; I am no sinking into an abyss of hypothyroid, but I haven't yet found a replacement doctor who will treat my symptoms instead of my TSH. ::bangs head on keyboard:: Those of you who know about Spoon Theory will understand when I say that I regularly run out of spoons by 11 a.m. and spend the rest of the day recovering.

I took it to mean go off meds for anxiety/depression?

[Dmmetler]

4 minutes ago, Pawz4me said:

I took it to mean go off meds for anxiety/depression?

Yes-some people (myself included) when younger would have bouts of depression/anxiety, but be able to go off meds. No real reason given, but often corresponding to physiological stress. "Normal" TSH...if it was tested at all before just prescribring psych meds. Then, we hit our 40's, the thyroid gsvr out to the point that even the GP blood work showed it, and yep, Hashi's. 
 

She commented that she could have diagnosed me with Hashi's without the test just because my medical history was a series of red flags for it that had been treated as separate conditions. 

[kbutton]

I don't currently have thyroid antibodies, but I have suboptimal thyroid function (made pretty much normal with iodine), and I strongly suspect I had post-partum thyroiditis rather than straight PPD. I was more anxious than depressed, and it didn't help that people were pretty gaslighting about my baby. He was very difficult(!), and people literally told me later that they didn't want to validate how difficult he was because they thought it would stress me out. 'Cause, you know, having abnormal experiences passed off as typical is not at all stressful. 🙄

 

[Pawz4me]

12 minutes ago, Dmmetler said:

Yes-some people (myself included) when younger would have bouts of depression/anxiety, but be able to go off meds. No real reason given, but often corresponding to physiological stress. "Normal" TSH...if it was tested at all before just prescribring psych meds. Then, we hit our 40's, the thyroid gsvr out to the point that even the GP blood work showed it, and yep, Hashi's. 

Same, except I was 51 at diagnosis.

[wathe]

Anti-NMDA receptor autoimmune encephalitis is one interesting example of neuropsychiatric autoimmune disease.  Brain on Fire is a great read; a first person account by Susannah Cahalan.  One of my amazing ED colleague made a this diagnosis last year (different patient!).  It was a very challenging case, complicated by presentation to multiple different facilities and complex and cumbersome electronic medical records that are both internally and externally siloed and don't talk to each other very well.

We are really on the dawn of a new medical era for chronic disease.  Both auto-immune and latent viral (often linked).  The recent link between MS and Epstien-Barr virus comes to mind.  And the negative correlation between shingles vaccine and dementia (suggesting that shingles vaccine may be protective against dementia).  We are about to find many like of these, I think.  

[KSera]

4 hours ago, Dmmetler said:

She commented that she could have diagnosed me with Hashi's without the test just because my medical history was a series of red flags for it that had been treated as separate conditions. 

If thyroid is being sufficiently treated, does knowing if it’s hashimotos still make a difference? My gp indicated there was no reason to test for it because it wouldn’t change treatment. I’m wondering if that’s the case. 

[Pawz4me]

8 minutes ago, KSera said:

If thyroid is being sufficiently treated, does knowing if it’s hashimotos still make a difference? My gp indicated there was no reason to test for it because it wouldn’t change treatment. I’m wondering if that’s the case. 

Both the internal medicine doctor who diagnosed me with hypothyroidism and the primary care PA I now see said it didn’t matter since the treatment was the same. But even though the odds are very high that it was Hashi’s I wanted to know for sure, since I have a strong family history of AI diseases and having one means you’re at higher risk of developing more. So I went to one of those labs where you can pay out of pocket and have blood work done. One of my antibodies that indicates Hashi’s was way out of the normal range. A few years later I was diagnosed with RA and my rheumatologist was interested. I think my thyroid was probably totally fried by the time I was diagnosed (I was really very unwell at the time). Levothyroxine keeps me steady, I don’t have ups and downs. So I haven’t had any need to seek care from an endocrinologist. If I’d had any trouble keeping my numbers regulated I would have pushed my regular providers for more testing or a referral to an endo. 

[Dmmetler]

46 minutes ago, KSera said:

If thyroid is being sufficiently treated, does knowing if it’s hashimotos still make a difference? My gp indicated there was no reason to test for it because it wouldn’t change treatment. I’m wondering if that’s the case. 

My target TSH is below 1, and at 2.0 or higher, my blood work looks horrible and I'm very symptomatic. At 4.0, I'm basically allergic to the world because my immune system is SO strongly in attack mode. So for me, sufficiently treated is what would be considered overtreated for most people.  If they're doing full blood work or if you have a unicorn doctor who treats based on symptoms, it probably doesn't matter, but if they're treating based on TSH, it's possible for it to be normal but other markers to not be.