I also understand the need for doctors to be measured in their diagnosis, so I don’t begrudge them for following protocols established for disease qualification. I don’t think of it as invalidating experiences of patients (though it can feel that way to patients) but everyone is aware of those that want a diagnosed health problem, and to a more frequent extent, those that want a tidy answer to their experiences even if there isn’t one. Denying a diagnosis of a known disease is not denying a diagnosis at all.
Had to push hard for further testing. Plus just trying the treatment. Had a big positive response. If I hadn’t pushed they would have just had me come in once a year to “check”.
One of the factors that got me a diagnosis.
My wife struggled with weird autoimmune symptoms that eventually progressed enough to get a diagnosis. At the time of her diagnosis, her life expectancy without treatment was 1-2 years. I empathize a lot with patients and doctors who are trying to dial-in on a mysterious illness.
In these cases, the psychological toll is pretty heavy - the uncertainty of your future while your very identity is being challenged. I've seen people respond badly - instances where people engage in a tragically comic route of turning to chronic alcohol intake, becoming inactive/sedentary, bandaging emotional pain with bad diet, etc. Precisely activities that are known to aggravate autoimmune disorders. This is a horrible reaction.
Now, even with a specific diagnosis, the first thing your rheumatologist is going to tell you is that you need to make lifestyle changes - diet, sleep quality, stress levels, etc. That's going to be solid medical advice regardless of what drugs you go on.
For those without a specific diagnosis, adopting these lifestyle changes is still good advice and within reach. There is no instance I've seen where someone with an autoimmune disorder can rely solely on drugs and be otherwise "normal". The drugs (especially those beyond hydroxychloroquine) have unpleasant side effects of their own that need to be managed. In all cases with drugs, the goal is to get the disease itself into a managed state, and ideally into remission. That's not possible for everyone, but for plenty of people it is possible to manage mild instances of disease without drugs, and enough of a possibility that I think it's at least worth a try. This doesn't mean stopping your drugs and doing reckless experiments, but in consultation with a rheumatologist weaning off drugs while having adopted lifestyle changes that avoid known triggers for flare ups. If it doesn't work, go back on the drugs.
Dramatically reduces rashes, swelling. Great substitute for viagra. Improves energy.
So it’s a weird balance.
I’m not sure these tests are good for diagnosing triggers though, compared to quarterly or biannual management of a disease (to make sure you’re not headed off the rails). The range for CRP, for instance, is relatively broad. What’s serious is when you’re exceeding the reference high.
In these cases (like maxed out SED rate) chronic inflammation is a thing and more than “feeling bad”. It does lasting damage so the quicker you can respond to it the better, and IME that kind of inflammation sneaks up on a person and often goes undiagnosed until other downstream problems start to present themselves.
There’s a bit of fashion to talking about “cytokine storms” and inflammation that is partly healthy to be aware of (and interesting to the seriously curious) but also a lot of faddish health nuttery lately. Be careful of the snake oil salesmen out there, folks.
Diets, supplements, exercise equipment, OTC meds, are as often nets to harvest disposable income more than they are serious approaches to managing disease.
For people suffering autoimmune disorders, much can be done with simple balanced diets and regular low stress body weight exercising. The key is avoiding things like excessive drinking, high mental stress levels, sleep dep. All the good advice for Puritan living that really applies to all of us, just that they have far, far lower tolerances for deviation. Response to NSAIDs may indicate what you’re fighting but if you’re there you’ve already failed upstream from where you are now. Chronic NSAID use isn’t all that great either but is often an unavoidable supplement for those trying to hold a normal career these days. This kind of internal feedback loop is more cost effective and probably more accurate for behavior correction than looking at daily blood work.
Time to see a rheumatologist
The SED rate doesn't identify its cause, so ANA and CRP can be ordered after a high SED rate (along with tests such as CBC, urinalysis, etc that would indicate other possible causes). CRP and ANA tests are pretty specific to autoimmune diseases.
ANA is most often associated with SLE (lupus). Not all AI diseases have positive ANA screen, and even in SLE once it's in a managed state both SED and ANA titer would ideally be back within spec.
I'd be curious (if you do regular blood work) do you have a SED rate within spec but an ANA titer out of spec? Or "just" a positive ANA screen test?
As far as diagnosing disease, there are many blood tests broadly that one would/could run to aid in diagnosing autoimmune diseases, including ANA pattern and titer, DS Antibody, SCL-70 antibody, ANA screen (IFA), SM antibody, Sjogren's antibodies, ANCA screen, P & C ANCA titer, rheumatoid factor, CRP, compliment levels (e.g. C3, C4), SED rate, white blood cell counts (neutorphils, lyphocytes, eosinophils, basophils, monocytes). Tests for organ function can also be critical in evaluation.
I don't know much about hypothyroidism, but my advice is to do a lot of self-education, reading as much literature as you can about it. Journal your behaviors, habits, stress levels, sleep, and food and identify patterns yourself. You can do this by eliminating certain environmental or dietary factors for four or six months, then do TSH tests again. You have to be careful of changing too many variables at once. I know it's a pain in the butt, but desperate times call for desperate measures. You want your disease to stay in a managed state and prevent any immune system issues from spidering into other disorders. If you have these potential warning signs of your immune system starting to crack, my advice is to do everything you can to protect it from reaching additional failure points.
Does this mean this is a typical of someone to be prescribed with autoimmune disorder? I was curious to know how one might discover on their own if they have it. As well as the effects of how someone feels (or changes) by taking NSAID ...
“non-steroidal anti-inflammatory drug”, a class that includes many popular non-opioid painkillers including aspirin, advil (ibuprofren), and aleve (naproxen), but not tylenol (acetaminophen/paracetamol).
Diagnosing an autoimmune disease on your own isn't advised, you should really see a specialist, not a GP. Specifically, get a referral to a rheumatologist. Blood work, sometimes xrays are required to properly diagnose. There are some 200+ known autoimmune disorders if I recall correctly, many people end up with a two-for-one deal. Sjögren's and Raynaud's seem to be not uncommon companions of other disorders, for instance.
CRP, is limited value test.
In general my blood work is great, yet I have lots of internal damage. It’s just not progressed enough to show up on typical blood tests.
Various antigen tests can pick up on it.
In case of pancreases, I got pancreatitis. Turned out that was an early sign of Sjogrens. At that point ultrasound was clean. Years later, Now it shows damage.