Comment by cpncrunch | Hacker News Reader

Comment by cpncrunch | Hacker News Reader

To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill".

CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead stressful lives (being an editor of New Yorker is definitely stressful). The things that worked for her -- alternative therapies, living a healthier and less stressful life -- typically help with CFS.

From having CFS myself and recovering, it seems to be caused by a state of persistent burnout caused by chronic stress. It's usually multiple stressors that build up and cause the brain to shut down the energy supply. It's not caused by a moral failing or laziness. I see it as similar to the central governor that limits athletic performance. You have no control over it, other than to change your lifestyle and hope that your brain recognises that there is no longer any chronic negative stress.

This is actually what the article says, which may inform your diagnosis:

> A few days later, she called to say that I had antibodies to my thyroid, a butterfly-shaped gland in the neck that regulates metabolism and energy. My thyroid was being attacked by my immune system—a disease known as autoimmune thyroiditis

> A common symptom of autoimmune diseases is debilitating fatigue.

> I found people who had the same supposedly disconnected symptoms I’d had over the years. One woman, like me, had had hives for months before an autoimmune disease was diagnosed; some had low cortisol or Vitamin D and Vitamin B12, or were anemic. Others experienced joint pain and the same maddening itching sensation that came and went.

> My joints hurt, my neck hurt; I had nosebleeds and large bruises up and down my legs. I spent hours every day unable to work, in the grip of severe itching in my arms and legs.

> "Your labs look normal, except for the thyroid hormones"

> A rheumatologist had found an antigen in my blood that is associated with a number of autoimmune diseases.

It also says:

>None of these were usual symptoms of thyroiditis.

>you could have a low antibody count and still be quite sick, or a high antibody count and feel fine.

>my TSH, a pituitary hormone that is supposed to get higher when your thyroid hormones get low, never budged

Also see:

http://www.sciencedirect.com/science/article/pii/S1568997207...

This is the stupidest thing I've read. She has a confirmed auto-immune disease. CFS (Chronic Fatigue Syndrome) isn't a diagnosis -- it's a description of symptoms with no understanding of the underlying cause. Hashimoto's is an actual disease, as we understand the mechanism behind it, even if we can't prevent it.

Try actually reading the article -- and perhaps doing some research -- before deciding to make an ignorant attack.

- she doesn't have auto-immune disease any more, but still has symptoms - auto-immune diseases are typically triggered by stress - we know that stress is a trigger for CFS and it fits the etiology

>Hashimoto's is an actual disease, as we understand the mechanism behind it

No, not quite. Many people have thyroid auto-antibodies but don't have thyroiditis, and some people (like the author of this article) have no auto-antibodies, but still have symptoms. Also there have been no placebo-controlled trials on the treatment, so we don't even know if it is effective. Do some research and you'll see it's not quite cut and dried.

Chronic fatigue can be caused by undiagnosed organic illnesses.

Personal anecdote: I had CFS for several years, and when the diagnosis (an easily treatable genetic condition) was eventually made, and treatment taken, I was better within a few months.

Yes, but by definition it isn't CFS if that is the case, as CFS is a diagnosis of exclusion at present.

It's certainly possible that CFS is caused by some as-yet-unidentified organic illness. However the science doesn't seem to point in that direction (as the stress system seems to be centrally implicated), and it also doesn't fit with the experiences of patients like myself who have fully recovered.

I may be splitting hairs, but "chronic fatigue" is a symptom. When its aetiology is unknown it is often classified as CFS. I would not be surprised to find that as medicine progresses many cases of CFS become re-classified.

Certainly, stress would exacerbate any symptoms of fatigue.

Yes, that's pretty much what I said. With the addition that if you look at the overall evidence it does seem to be pointing towards stress as the cause.

In the absence of an underlying vulnerability, it would seem pretty unlikely that stress alone would be sufficient to cause CFS. Many people have very stressful lives (including being refugees, being under regular fire, etc) without getting CFS.

The same can be said for PTSD. Whether or not chronic stress leads to hypocortisolism and burnout/CFS seems to be whether or not dealing with the stress is in the best interests of the organism (https://www.ncbi.nlm.nih.gov/pubmed/15950390), along with other factors such as time since onset, nature of the stress, personality factors, etc.

Stress-related disorders are quite common among the military and refugees (higher level of prevalence than the general population).

Was the diagnosis hemochromatosis?

Yup, and highly penetrant. Luckily it was caught before the worst consequences manifested themselves.

What made you think of hemochromatosis?

AFAIK the latest on CFS is that it is autoimmune. Also thyroid conditions often goes into remission so negative tests don't necessarily mean there is was nothing there. And yes both can be triggered by stress (as in my case of fixed Graves and current CFS) but I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve. Effectively retiring wasnt sufficient for me. I think there is a multifaceted brain / microbiota axis but I'm still researching and experimenting. LDN will be my next experiment.

>AFAIK the latest on CFS is that it is autoimmune

No, that's not true at all. Lots of research going on now, but nothing found yet. There has actually been research for years showing autoimmune dysfunction in CFS, but there's no evidence it is causal.

Stress has been shown to trigger autoimmunity, and is known to cause the immune abnormalities seen in CFS. Basically stress causes a shift to Th1-like immunity, which makes it more likely the body will attack healthy cells, as well as impaired NK function.

>I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve

Anecdotal, but I have completely recovered 100% (zero symptoms for 17 years). I've also talked to lots of other people who have recovered. If you're still experiencing CFS, I would say reducing stress (including quitting a stressful job if you're in one), and dealing with any emotional stressors, is the main thing to concentrate on. After that, increase pleasurable physical and mental activities. There's no current drugs or supplements that will help at all (other than perhaps reducing some symptoms).

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