Autoimmune Something

[Nopenada]

Calling this a "vent" doesn't feel right, but I need to unload it from my head and put it somewhere. The short version: something is happening.

A rheumatologist ordered bloodwork costing thousands of dollars, and I have scans coming up before long. That's because of the first test that came back. Nearly all the labs are back and look excellent—except it's obvious I'll test positive for the same thing again. (If I weren't going to, the result would already be here, since it would have been returned quickly unless a closer look was needed.)

There's clearly something going on. I have no idea what it is or how much I should be concerned, and it's making me slightly crazy.

 

[lessthanhalf]

That sounds like a rough spot to be in. For me, few things are more maddening than a medical issue that cannot be pinned down, and for many people the not-knowing—particularly when serious illness is a possibility—brings on anxiety. Even when there is sufficient clinical and test data to settle on a firm diagnosis, getting the proper testing completed may take time. Frequently there is no obvious, straightforward diagnosis to reach, and the best course might simply be to monitor whether symptoms worsen or become clearer with time, or to rerun labs later and look for a consistent pattern. That is often quite irritating, yet usually unclear symptoms and tests point toward a milder issue—or no issue at all.

You can certainly search or ask chatgpt about why ANA tests come back positive; still, a minimum of 15% test positive while having no meaningful disease, so a positive result proves nothing on its own. My guess is that the remaining tests mostly showed little—or you would have mentioned them? If it is only a positive ANA, that probably carries less weight. Since I lack the whole picture, I have no clue what is actually happening, and under these circumstances trying to diagnose over the internet is likely to do more harm than good.

 

[CNCCurrency]

lessthanhalf said:

That sounds like a rough spot to be in. For me, few things are more maddening than a medical issue that cannot be pinned down, and for many people the not-knowing—particularly when serious illness is a possibility—brings on anxiety. Even when there is sufficient clinical and test data to settle on a firm diagnosis, getting the proper testing completed may take time. Frequently there is no obvious, straightforward diagnosis to reach, and the best course might simply be to monitor whether symptoms worsen or become clearer with time, or to rerun labs later and look for a consistent pattern. That is often quite irritating, yet usually unclear symptoms and tests point toward a milder issue—or no issue at all.

You can certainly search or ask chatgpt about why ANA tests come back positive; still, a minimum of 15% test positive while having no meaningful disease, so a positive result proves nothing on its own. My guess is that the remaining tests mostly showed little—or you would have mentioned them? If it is only a positive ANA, that probably carries less weight. Since I lack the whole picture, I have no clue what is actually happening, and under these circumstances trying to diagnose over the internet is likely to do more harm than good.

What makes you figure you're some kind of internet doctor??? OMG, you're handing out recommendations as though you actually are one.

 

[Nopenada]

lessthanhalf said:

That sounds like a rough spot to be in. For me, few things are more maddening than a medical issue that cannot be pinned down, and for many people the not-knowing—particularly when serious illness is a possibility—brings on anxiety. Even when there is sufficient clinical and test data to settle on a firm diagnosis, getting the proper testing completed may take time. Frequently there is no obvious, straightforward diagnosis to reach, and the best course might simply be to monitor whether symptoms worsen or become clearer with time, or to rerun labs later and look for a consistent pattern. That is often quite irritating, yet usually unclear symptoms and tests point toward a milder issue—or no issue at all.

You can certainly search or ask chatgpt about why ANA tests come back positive; still, a minimum of 15% test positive while having no meaningful disease, so a positive result proves nothing on its own. My guess is that the remaining tests mostly showed little—or you would have mentioned them? If it is only a positive ANA, that probably carries less weight. Since I lack the whole picture, I have no clue what is actually happening, and under these circumstances trying to diagnose over the internet is likely to do more harm than good.

Appreciate it. And correct—across the entire test panel, nothing else is showing up. What worries me most, I suppose, is that because there’s so little to go on, doctors may keep waving off what I’m experiencing. Likely it’s simply that after all these years of medical gaslighting, I’m feeling raw at the moment.

 

[lessthanhalf]

CNCCurrency said:

lessthanhalf said:

That sounds like a rough spot to be in. For me, few things are more maddening than a medical issue that cannot be pinned down, and for many people the not-knowing—particularly when serious illness is a possibility—brings on anxiety. Even when there is sufficient clinical and test data to settle on a firm diagnosis, getting the proper testing completed may take time. Frequently there is no obvious, straightforward diagnosis to reach, and the best course might simply be to monitor whether symptoms worsen or become clearer with time, or to rerun labs later and look for a consistent pattern. That is often quite irritating, yet usually unclear symptoms and tests point toward a milder issue—or no issue at all.

You can certainly search or ask chatgpt about why ANA tests come back positive; still, a minimum of 15% test positive while having no meaningful disease, so a positive result proves nothing on its own. My guess is that the remaining tests mostly showed little—or you would have mentioned them? If it is only a positive ANA, that probably carries less weight. Since I lack the whole picture, I have no clue what is actually happening, and under these circumstances trying to diagnose over the internet is likely to do more harm than good.

What makes you figure you're some kind of internet doctor??? OMG, you're handing out recommendations as though you actually are one.

I’m curious—have I done something that upset you? Is it my views on peptides? My politics? I don’t get why so many replies to my comments are insults instead of engaging with what I actually wrote. My writing style comes from having a medical degree and having gone through a great deal of the research, particularly regarding GLP drugs. I usually steer clear of giving medical advice per se, with the exception of glp drugs dosing and side effects, since I’ve used them myself and, as I mentioned, have reviewed the research. When I notice something that could be a red flag on a medical issue, I generally tell people to consult their doctor, or I may offer more general-purpose advice, especially when it concerns obesity, weight loss, or problems that arise from weight loss.

 

[cujet]

Given that your ANA came back positive along with the symptoms you're having, I really hope a definitive answer comes your way.

For me, things began at 33 with thyroid failure from Hashimoto's, and the autoimmune assault kept going without letup for 30 years. The thyroid failure gets treated, but the autoimmune disease driving it does not.

Where that leaves me today is simple: my life has been wrecked, I had to retire early from a great career, and I'm left badly damaged and facing serious danger.

Hashimoto's (complete thyroid failure)

T is very low. (25ng/dl) Yikes

MCTD, mixed connective tissue disease, similar to Lupus, it does damage and brings crushing fatigue

Myasthenia Gravis (the nerve-to-muscle junction stops working) Muscles don't work the way they should

Secondary Adrenal Insufficiency, the pituitary gland stops making ACTH, so the adrenal glands make no cortisol. Without medication, fatal in about 2 days. 5 to 6 times per day.

Autoimmune diseases are nothing to laugh at. My former doctors make me furious.

 

[WLBLD]

I wouldn't work yourself into a tizzy over it. According to a Dr I spoke with, false positives or negatives happen 50% of the time. A titer of 1:80 is on the low end. My own is above 160 (yet even that is still viewed as somewhat low, despite being double).

Are there symptoms you're having that are making you anxious?

This has been my reality for years. Often nothing gets identified. 1 Rhemy claimed I had mild Lupus, then after putting me on a high dose of meds for a while that triggered a bad reaction in me, she denied ever having said I did. What? If my husband hadn't been there to hear it, I'd have believed I was losing my mind. And also, if those words never came from her, why hand me those meds in the first place?

Eventually I learned I tested positive for thyroglobulin antibodies (which means Hashimotos), yet they won't intervene until my thyroid numbers go off

Naturally keep seeing your Drs, but don't let them frighten or stress you. Typically when it's among the more serious or active kinds, the numbers come back much higher.

 

[lessthanhalf]

The relevance of this is difficult to judge when the symptoms that led to testing aren’t known. However, run enough tests and you’ll likely discover something: each test may have only a modest false-positive rate, but across many tests the chance of at least one false positive rises, and that result can trigger further testing. That’s a strong argument against broad, fishing-style screening instead of targeted tests aimed at the specific symptom set. Such shotgun testing often yields findings that aren’t ultimately useful, and it can readily leave people more anxious that something is wrong while doing nothing to clarify the clinical picture.

 

[Nopenada]

WLBLD said:

I wouldn't work yourself into a tizzy over it. According to a Dr I spoke with, false positives or negatives happen 50% of the time. A titer of 1:80 is on the low end. My own is above 160 (yet even that is still viewed as somewhat low, despite being double).

Are there symptoms you're having that are making you anxious?

This has been my reality for years. Often nothing gets identified. 1 Rhemy claimed I had mild Lupus, then after putting me on a high dose of meds for a while that triggered a bad reaction in me, she denied ever having said I did. What? If my husband hadn't been there to hear it, I'd have believed I was losing my mind. And also, if those words never came from her, why hand me those meds in the first place?

Eventually I learned I tested positive for thyroglobulin antibodies (which means Hashimotos), yet they won't intervene until my thyroid numbers go off

Naturally keep seeing your Drs, but don't let them frighten or stress you. Typically when it's among the more serious or active kinds, the numbers come back much higher.

The titer shown in that result is 1:320. The same test was run a second time, and those results came in at 1:640. Meanwhile, all the other labs have come back clean, with nothing indicating a problem. My PCP told me today that without locating what is causing the symptoms, treating those symptoms isn't possible, which means I'll probably have to tolerate it until enough damage accumulates for testing to pick it up more clearly.

lessthanhalf said:

The relevance of this is difficult to judge when the symptoms that led to testing aren’t known. However, run enough tests and you’ll likely discover something: each test may have only a modest false-positive rate, but across many tests the chance of at least one false positive rises, and that result can trigger further testing. That’s a strong argument against broad, fishing-style screening instead of targeted tests aimed at the specific symptom set. Such shotgun testing often yields findings that aren’t ultimately useful, and it can readily leave people more anxious that something is wrong while doing nothing to clarify the clinical picture.

None of the bloodwork produced a false positive. The scans are what comes next. My guess is that the odds are quite high I'll simply be advised to accept the situation and return later for additional testing.

Honestly, though, I'd rather have that than be gaslit by doctors who insist nothing is wrong. I also wish my rheum and PCP would stop bringing menopause into it; my hormone levels are all fine, yet my age makes possible perimenopause an easy thing to blame.

 

[WLBLD]

Nopenada said:

WLBLD said:

I wouldn't work yourself into a tizzy over it. According to a Dr I spoke with, false positives or negatives happen 50% of the time. A titer of 1:80 is on the low end. My own is above 160 (yet even that is still viewed as somewhat low, despite being double).

Are there symptoms you're having that are making you anxious?

This has been my reality for years. Often nothing gets identified. 1 Rhemy claimed I had mild Lupus, then after putting me on a high dose of meds for a while that triggered a bad reaction in me, she denied ever having said I did. What? If my husband hadn't been there to hear it, I'd have believed I was losing my mind. And also, if those words never came from her, why hand me those meds in the first place?

Eventually I learned I tested positive for thyroglobulin antibodies (which means Hashimotos), yet they won't intervene until my thyroid numbers go off

Naturally keep seeing your Drs, but don't let them frighten or stress you. Typically when it's among the more serious or active kinds, the numbers come back much higher.

The titer shown in that result is 1:320. The same test was run a second time, and those results came in at 1:640. Meanwhile, all the other labs have come back clean, with nothing indicating a problem. My PCP told me today that without locating what is causing the symptoms, treating those symptoms isn't possible, which means I'll probably have to tolerate it until enough damage accumulates for testing to pick it up more clearly.

lessthanhalf said:

The relevance of this is difficult to judge when the symptoms that led to testing aren’t known. However, run enough tests and you’ll likely discover something: each test may have only a modest false-positive rate, but across many tests the chance of at least one false positive rises, and that result can trigger further testing. That’s a strong argument against broad, fishing-style screening instead of targeted tests aimed at the specific symptom set. Such shotgun testing often yields findings that aren’t ultimately useful, and it can readily leave people more anxious that something is wrong while doing nothing to clarify the clinical picture.

None of the bloodwork produced a false positive. The scans are what comes next. My guess is that the odds are quite high I'll simply be advised to accept the situation and return later for additional testing.

Honestly, though, I'd rather have that than be gaslit by doctors who insist nothing is wrong. I also wish my rheum and PCP would stop bringing menopause into it; my hormone levels are all fine, yet my age makes possible perimenopause an easy thing to blame.

Has anyone tested for Hashimotos as well? Few seem to, and in my case it took more than 15 years before I came up with it on my own and got them to run it.

What about celiac? That is another thing that may lead to a positive result too.

The fact that the remaining labs were negative is encouraging—it indicates the serious conditions are not present. Not having a name for it can be frightening, yet keep in mind you are clear of those.

Do you happen to be hypermobile? Joint pain can come from that.

Wishing you improvement and some answers

 

[lessthanhalf]

Nopenada said:

WLBLD said:

I wouldn't work yourself into a tizzy over it. According to a Dr I spoke with, false positives or negatives happen 50% of the time. A titer of 1:80 is on the low end. My own is above 160 (yet even that is still viewed as somewhat low, despite being double).

Are there symptoms you're having that are making you anxious?

This has been my reality for years. Often nothing gets identified. 1 Rhemy claimed I had mild Lupus, then after putting me on a high dose of meds for a while that triggered a bad reaction in me, she denied ever having said I did. What? If my husband hadn't been there to hear it, I'd have believed I was losing my mind. And also, if those words never came from her, why hand me those meds in the first place?

Eventually I learned I tested positive for thyroglobulin antibodies (which means Hashimotos), yet they won't intervene until my thyroid numbers go off

Naturally keep seeing your Drs, but don't let them frighten or stress you. Typically when it's among the more serious or active kinds, the numbers come back much higher.

The titer shown in that result is 1:320. The same test was run a second time, and those results came in at 1:640. Meanwhile, all the other labs have come back clean, with nothing indicating a problem. My PCP told me today that without locating what is causing the symptoms, treating those symptoms isn't possible, which means I'll probably have to tolerate it until enough damage accumulates for testing to pick it up more clearly.

lessthanhalf said:

The relevance of this is difficult to judge when the symptoms that led to testing aren’t known. However, run enough tests and you’ll likely discover something: each test may have only a modest false-positive rate, but across many tests the chance of at least one false positive rises, and that result can trigger further testing. That’s a strong argument against broad, fishing-style screening instead of targeted tests aimed at the specific symptom set. Such shotgun testing often yields findings that aren’t ultimately useful, and it can readily leave people more anxious that something is wrong while doing nothing to clarify the clinical picture.

None of the bloodwork produced a false positive. The scans are what comes next. My guess is that the odds are quite high I'll simply be advised to accept the situation and return later for additional testing.

Honestly, though, I'd rather have that than be gaslit by doctors who insist nothing is wrong. I also wish my rheum and PCP would stop bringing menopause into it; my hormone levels are all fine, yet my age makes possible perimenopause an easy thing to blame.

It seems quite possible that no diagnosis is coming your way—certainly not at this point, and likely not unless circumstances shift or future bloodwork is repeated and reveals something meaningful. That pattern happens often, though it remains quite frustrating.

Roughly two years back, the skin on my neck and upper chest turned deep red out of nowhere. I looked into it extensively, visited my physician, had labs drawn and tissue samples taken, then went to specialists and had additional biopsies. Even so, no explanation or therapy ever came, and the discoloration remains. It is bothersome and somewhat maddening, yet thankfully it is not a threat to my life or health—aside from a red neck at present.

I won’t pretend doctors never gaslight patients. The menopause subject, for instance, is a reminder that women suffering heart attacks are diagnosed and treated less often and less aggressively than men, which shows medical sexism has not gone away. Still, when no diagnosis can be made—or the clinician simply doesn’t know—what is the proper thing to say? Is it better to hear that something is definitely wrong, even though nobody can name it, or that perhaps nothing is wrong, when either statement may be true? Usually, the first option will increase anxiety, while the second comes uncomfortably close to gaslighting.

 

[BrightCandle]

A lot of these illnesses are poorly understood, which means they often go undiagnosed. Research money and attention for autoimmune conditions remain inadequate, largely because women are affected more often; medical research has been—and still is—shaped by sexism. After Covid, I’m facing one of these myself, and the medical world has treated me terribly. I hope you end up with a diagnosis and a treatable option.

Because of that, I’m exploring immune modulators from the peptide scene, along with things meant to address symptoms such as sleep problems.

 

[AlexGarden]

BrightCandle said:

A lot of these illnesses are poorly understood, which means they often go undiagnosed. Research money and attention for autoimmune conditions remain inadequate, largely because women are affected more often; medical research has been—and still is—shaped by sexism. After Covid, I’m facing one of these myself, and the medical world has treated me terribly. I hope you end up with a diagnosis and a treatable option.

Because of that, I’m exploring immune modulators from the peptide scene, along with things meant to address symptoms such as sleep problems.

I’m in the same situation after COVID... I hope you can find a path to healing. It really sucks.

Would you be open to sharing which peptides you’ve tried, whether you felt any effects, or whether you have any on your radar for particular reasons?

 

[BrightCandle]

AlexGarden said:

BrightCandle said:

A lot of these illnesses are poorly understood, which means they often go undiagnosed. Research money and attention for autoimmune conditions remain inadequate, largely because women are affected more often; medical research has been—and still is—shaped by sexism. After Covid, I’m facing one of these myself, and the medical world has treated me terribly. I hope you end up with a diagnosis and a treatable option.

Because of that, I’m exploring immune modulators from the peptide scene, along with things meant to address symptoms such as sleep problems.

I’m in the same situation after COVID... I hope you can find a path to healing. It really sucks.

Would you be open to sharing which peptides you’ve tried, whether you felt any effects, or whether you have any on your radar for particular reasons?

They're still just on my radar since I haven't had them tested. I've set up QYC groups on STG TG. Things such as TA1 and VIP are included, and for symptoms, DSIP, Epi, and SS-31 are more the focus.

 

[moodymama76]

BrightCandle said:

AlexGarden said:

BrightCandle said:

A lot of these illnesses are poorly understood, which means they often go undiagnosed. Research money and attention for autoimmune conditions remain inadequate, largely because women are affected more often; medical research has been—and still is—shaped by sexism. After Covid, I’m facing one of these myself, and the medical world has treated me terribly. I hope you end up with a diagnosis and a treatable option.

Because of that, I’m exploring immune modulators from the peptide scene, along with things meant to address symptoms such as sleep problems.

I’m in the same situation after COVID... I hope you can find a path to healing. It really sucks.

Would you be open to sharing which peptides you’ve tried, whether you felt any effects, or whether you have any on your radar for particular reasons?

They're still just on my radar since I haven't had them tested. I've set up QYC groups on STG TG. Things such as TA1 and VIP are included, and for symptoms, DSIP, Epi, and SS-31 are more the focus.

TA1 isn’t advised when autoimmune issues are present. You wouldn’t want to increase it. A better route would be something such as KPV, as it modulates rather than stimulates the immune system. The cytokines in question are TNFa , IL-1 and IL-6.