Autoimmune Something

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Nopenada

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I wouldn’t call this a “vent” but I feel like I need to get it out of my head and dump it somewhere. Bottom line is there is something going on.

I got thousands of dollars worth of blood testing ordered by a rheumatologist and I’m also going to be getting scans done soon. This based on the first test that came back. Most of the lab work has come back and everything looks great, except I’m clearly going to pop on the same test a second time. (If I wasn’t, the test would have already come back because it would have been quick turn around if they didn’t need to do a deeper dive.)

Something is up and I don’t know what or how worried I should be and it’s driving me a little nuts.
 
Sorry you are in that situation, nothing makes me crazier than not being able to diagnose a medical problem, and the uncertainty , especially about potentially serious medical problems, is anxiety causing in most people. Unfortunately even if there is enough clinical and test information to make a definite diagnosis, it can still take a while to get the right tests done, and often there is no clear simple diagnosis to make, and the correct answer could well be wait and see if either symptoms get worse or more clear over time, or repeat tests after a while to see if a definite pattern emerges. This can be pretty frustrating, but in general it is likely to be a less severe problem or even no problem if tests and symptoms are unclear.

I am sure you can look up or ask chatgpt the common causes of positive ANA tests, but at least 15% have a positive result without there being significant disease present so it does not mean anything for certain. I assume most or all the other tests did not show much?, otherwise you would have included them? An isolated positive ANA is likely to be less relevant in that case. Without the full picture I have no idea what is really going on, and in this sort of situation medical diagnostic guessing online is probably more harmful than useful.
 
lessthanhalf said:


Sorry you are in that situation, nothing makes me crazier than not being able to diagnose a medical problem, and the uncertainty , especially about potentially serious medical problems, is anxiety causing in most people. Unfortunately even if there is enough clinical and test information to make a definite diagnosis, it can still take a while to get the right tests done, and often there is no clear simple diagnosis to make, and the correct answer could well be wait and see if either symptoms get worse or more clear over time, or repeat tests after a while to see if a definite pattern emerges. This can be pretty frustrating, but in general it is likely to be a less severe problem or even no problem if tests and symptoms are unclear.

I am sure you can look up or ask chatgpt the common causes of positive ANA tests, but at least 15% have a positive result without there being significant disease present so it does not mean anything for certain. I assume most or all the other tests did not show much?, otherwise you would have included them? An isolated positive ANA is likely to be less relevant in that case. Without the full picture I have no idea what is really going on, and in this sort of situation medical diagnostic guessing online is probably more harmful than useful.

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Why do you think you are some sorta keyboard dr??? OMG you're giving advice like you are.
 
lessthanhalf said:


Sorry you are in that situation, nothing makes me crazier than not being able to diagnose a medical problem, and the uncertainty , especially about potentially serious medical problems, is anxiety causing in most people. Unfortunately even if there is enough clinical and test information to make a definite diagnosis, it can still take a while to get the right tests done, and often there is no clear simple diagnosis to make, and the correct answer could well be wait and see if either symptoms get worse or more clear over time, or repeat tests after a while to see if a definite pattern emerges. This can be pretty frustrating, but in general it is likely to be a less severe problem or even no problem if tests and symptoms are unclear.

I am sure you can look up or ask chatgpt the common causes of positive ANA tests, but at least 15% have a positive result without there being significant disease present so it does not mean anything for certain. I assume most or all the other tests did not show much?, otherwise you would have included them? An isolated positive ANA is likely to be less relevant in that case. Without the full picture I have no idea what is really going on, and in this sort of situation medical diagnostic guessing online is probably more harmful than useful.

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Thanks. Yeah, nothing else is popping on the full range of tests. I guess my biggest concern is that with so little information it’ll be easy for doctors to continue to shrug off my symptoms. I think it’s probably just the years of medical gaslighting making me sensitive right now.
 
CNCCurrency said:


Why do you think you are some sorta keyboard dr??? OMG you're giving advice like you are.

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Out of curiosity is there something I have done that offends you ? My attitudes about peptides? my politics? I am not sure what is the purpose of insulting replies to a lot of my comments, rather than criticisms of the actual contents of what I write. I write in that style as I do have a medical degree, and have read a lot of the research, especially on GLP drugs. I try to avoid giving medical advice as such , except for about glp drugs dosing and side effects, as I do have personal experience with them , and as I said I have read the research, and if I see things that might be red flags on medical issues generally suggest they see their doctor, or sometimes more general purpose advice especially if it relates to obesity, weight loss or issues resulting from weight loss.
 
With a positive ANA and symptoms, I hope they are able to find a clear answer for you.

In my case I started out with Hashimoto's thyroid failure at age 33, and the autoimmune attack continued unabated for 30 years. Treat the symptoms of a failed thyroid but not the autoimmune disease itself.

Here's where I am now, and quite simply it has ruined my life, forced an early retirement from a fantastic career and left me very damaged and at grave risk.

Hashimoto's (total thyroid failure)

Very low T. (25ng/dl) Yikes

MCTD mixed connective tissue disease, like Lupus, it is damaging, extreme fatigue

Myasthenia Gravis (nerve to muscle interface inop) Causes muscles not to function as required

Secondary Adrenal Insufficiency, pitituary gland fails to produce ACTH, so adrenal glands produce no cortisol. Fatal in about 2 days if not treated with medication. 5 to 6 times per day.

Autoimmune diseases are no joke. I'm infuriated at my previous doctors.
 
I wouldn't let yourself get too worried. A Dr told me 50% of the time you can get a false positive or negative. The 1:80 is a low titer. Mine is over 160 (but thats still considered on the lower side even though double).

Do you have symptoms that would cause you to worry?

Ive been going through this for years. They don't always find something. 1 Rhemy told me I had mild Lupus, then after prescribing a high dose of meds for a while that I had a bad reaction to she said she never told me that I did. What? Thank goodness my husband was there to hear or I would have thought I was going crazy. Also, if she never said that why would she prescribe those meds?

I did finally find out I was positive for thyroglobulin antibodies (meaning Hashimotos) but they wont do anything about it until my thyroid numbers are off

Of course continue to see your Drs but dont let them scare or worry you. Usually with the more serious ones or active it will be much higher.
 
Without knowing what the symptoms were that caused you to get the tests done it is very hard to say if this applies, but if you do enough tests , you are almost guaranteed to find something, even if each individual test has a fairly low false positive rate, if you do enough, the odds are you will get a false positive test, which leads to more tests. This is a good reason not to test for lots of problems as fishing type tests, rather than more specific tests for the exact set of symptoms, have good odds of giving results that in the end are not very helpful, and can easily end up with just making people more worried something might be wrong, without making the clinical picture any clearer
 
WLBLD said:


I wouldn't let yourself get too worried. A Dr told me 50% of the time you can get a false positive or negative. The 1:80 is a low titer. Mine is over 160 (but thats still considered on the lower side even though double).

Do you have symptoms that would cause you to worry?

Ive been going through this for years. They don't always find something. 1 Rhemy told me I had mild Lupus, then after prescribing a high dose of meds for a while that I had a bad reaction to she said she never told me that I did. What? Thank goodness my husband was there to hear or I would have thought I was going crazy. Also, if she never said that why would she prescribe those meds?

I did finally find out I was positive for thyroglobulin antibodies (meaning Hashimotos) but they wont do anything about it until my thyroid numbers are off

Of course continue to see your Drs but dont let them scare or worry you. Usually with the more serious ones or active it will be much higher.

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The titter up there says 1:320. Just got results back from the second running of the same test, which are 1:640. Of course, every single other test has come back negative for any problems. Today my PCP confirmed that if they don’t find the source of the symptoms then they can’t treat the symptoms, so I’ll likely just have to live with it until there is enough damage that it can be better caught by tests.

lessthanhalf said:


Without knowing what the symptoms were that caused you to get the tests done it is very hard to say if this applies, but if you do enough tests , you are almost guaranteed to find something, even if each individual test has a fairly low false positive rate, if you do enough, the odds are you will get a false positive test, which leads to more tests. This is a good reason not to test for lots of problems as fishing type tests, rather than more specific tests for the exact set of symptoms, have good odds of giving results that in the end are not very helpful, and can easily end up with just making people more worried something might be wrong, without making the clinical picture any clearer

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No false positives with any of the bloodwork. Next up is the scans. I think there is a very high probability that I’m just going to get told to live with it and come back down the road for more testing.

But honestly, at this point that is better than getting gaslit either way doctors telling me there isn’t anything wrong. I just wish the rhum and the PCP would leave menopause out of the conversation because my hormones all look great, but because of my age blaming possible peri is nice low hanging fruit.
 
Nopenada said:


The titter up there says 1:320. Just got results back from the second running of the same test, which are 1:640. Of course, every single other test has come back negative for any problems. Today my PCP confirmed that if they don’t find the source of the symptoms then they can’t treat the symptoms, so I’ll likely just have to live with it until there is enough damage that it can be better caught by tests.

No false positives with any of the bloodwork. Next up is the scans. I think there is a very high probability that I’m just going to get told to live with it and come back down the road for more testing.

But honestly, at this point that is better than getting gaslit either way doctors telling me there isn’t anything wrong. I just wish the rhum and the PCP would leave menopause out of the conversation because my hormones all look great, but because of my age blaming possible peri is nice low hanging fruit.

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Did they check for Hashimotos also? Not many do & took me over 15 years before I thought of it myself & had them run it. Celiac? That can cause the positive as well.

Its good news the other tests came back negative. meaning you dont have the serious ones. Its scary to not know but focus that you dont have those,

Are you hypermobile by any chance? That can cause joint pain.

I hope you feel better & find answers 🙂
 
Nopenada said:


The titter up there says 1:320. Just got results back from the second running of the same test, which are 1:640. Of course, every single other test has come back negative for any problems. Today my PCP confirmed that if they don’t find the source of the symptoms then they can’t treat the symptoms, so I’ll likely just have to live with it until there is enough damage that it can be better caught by tests.

No false positives with any of the bloodwork. Next up is the scans. I think there is a very high probability that I’m just going to get told to live with it and come back down the road for more testing.

But honestly, at this point that is better than getting gaslit either way doctors telling me there isn’t anything wrong. I just wish the rhum and the PCP would leave menopause out of the conversation because my hormones all look great, but because of my age blaming possible peri is nice low hanging fruit.

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Sounds a lot like you are not going to get a diagnosis, at least not now and probably not unless something changes or blood tests get repeated later and show something useful. This is really common, but still pretty irritating.

A couple of years ago my neck and upper chest suddenly went dark red for no obvious reason, despite a lot of research on my part , seeing my doctor and getting blood tests and biopsies , then seeing specialists and getting more biopsies, I still never got any answers or any treatment and I still have it . Annoying and a bit frustrating, but thankfully nothing life or health threatening other than having a red neck now.

I will not deny that doctors can gaslight patients, and even the menopause thing reminds me that doctors are less likely to diagnose or treat women with heart attacks as often or as aggressively as men, so medical sexism is still alive and well. But it is hard to say what the right answer is to tell people when there might not be a diagnosis to make, or they are just unsure. Are you better off being told yes there is definitely something wrong, but we do not know what, or that there might be nothing wrong, especially when either could be the truth. On average the first answer is going to make people worry more, but the second is dangerously close to gaslighting.
 
Most of these conditions don't get diagnosed as they are poorly understood. We have poor research funding and effort into auto immune conditions since they impact females more and there is historic (and current) sexism in medical research. I am dealing with one myself after Covid and I have been treated really badly by everything medical. Hopefully you get a diagnosis and something treatable.

I am thus pursing trying the immune modulators of the peps world as well as some symptom targeting stuff like sleep disruption.
 
BrightCandle said:


Most of these conditions don't get diagnosed as they are poorly understood. We have poor research funding and effort into auto immune conditions since they impact females more and there is historic (and current) sexism in medical research. I am dealing with one myself after Covid and I have been treated really badly by everything medical. Hopefully you get a diagnosis and something treatable.

I am thus pursing trying the immune modulators of the peps world as well as some symptom targeting stuff like sleep disruption.

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Same here after covid... hope you find a way to heal. It sucks

Do you mind telling us about the peptides you've tried and if you noticed any effects or if you have some on your radar for specific reasons?
 
AlexGarden said:


Same here after covid... hope you find a way to heal. It sucks

Do you mind telling us about the peptides you've tried and if you noticed any effects or if you have some on your radar for specific reasons?

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More on the radar as I don't have them tested yet (got groups up for QYC on STG TG). But things like TA1, VIP and then symptom stuff is more DSIP, Epi, SS-31.
 
BrightCandle said:


More on the radar as I don't have them tested yet (got groups up for QYC on STG TG). But things like TA1, VIP and then symptom stuff is more DSIP, Epi, SS-31.

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TA1 is not recommended for autoimmune. You don't want to ramp that up. Something like KPV is better because it regulates instead of boosting immune system. Specifically cytokines TNFa , IL-1 and IL-6.
 
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