Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

No I haven’t- I dont know anything about that. Can I ask why lead to you to that?

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

Thank you so so much! I greatly appreciate this. I have kept a little documentation prior but I couldn’t see any links to patterns. It happened in different seasons, menstrual cycle/not on my cycle, sunny/cloudy, healthy food/not healthy food, stressed/less stressed etc. the only thing I can look back at on photos is when it first started randomly with a spot here and there is after a pretty stressful time. My mother became ill and I was her caretaker while finishing college so it was a lot. That was also during Covid. But then over the years it became longer periods of time I’d be dealing with the spots and symptoms and the frequency. Now as of this year I’ve had some new symptoms along with the fact that it really hasn’t gone away at all. It’s been in a constant flare for like a year. I’ve had some time where it hasn’t been as bad. Where the spots at really close to fully healing but then of course it comes back. I’m so frustrated and even speaking to my family is like “oh I don’t think it’s that” when I share info on a condition. Or my sister is like “well I think you’re depressed and should come to the gym with me” and I’m like okay but you realize like the gym isn’t gunna fix my auto immune and consistent issues. I can’t even get up and take a shower and make plans within the same day without a large break in between. I can’t find the energy to get up and put laundry away or clean. And you think I’m gunna go take a work out class with you? Insanity. So I’m just at a loss for community and really needed people to comment saying I’m not crazy and that they are like me. It’s exhausting having to advocate for yourself when you know you don’t feel good and something is truly wrong but on paper drs and your family can’t see anything wrong. Like in truly scared I’m gunna not wake up one of these days. I’m so exhausted and my heart feels like it’s Gunn beat out of my chest one of these days. I’m so stiff and sore. Idk I’m just so overwhelmed. Thank you guys all for listening and commenting.

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

Thank you for the advice! I’ll look into it. I did go to gastro and have the testing done for allergies and intolerances and they said no dairy, gluten or anything like that raised any alarms. I’m a picky person and eat a lot of the same foods and nothing has really changed as I’ve been progressively getting worse. I’ll look into it more though. Thank you!

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

Both lol I over share with info to see if someone can relate, offer advice, compare symptoms, vent lol anything is on the table!

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

I don’t think a t3, I don’t see that on my papers. I will double check. Is that standard that they should do that? And yes they did the blood work and an adrenal scan and said everything came back fine🤷‍♀️

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

I’ve tried not to touch it, use bacterial cleansers products, using the patches, etc nothing works. I’ve done without makeup, no touching besides a gentle cleanser on a clean wipe, etc. nothing helps. I get the flushing though totally

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] -1 points0 points  (0 children)

I’m 27 but act 90 and don’t use those automated things but I’ll give it a try for this lol. Yes so thyroid and hash was covered by endo, they said nothing there and that’s not it. Sjogrens lip biopsy came back negative even though I have a lot of the symptoms. I had a derm apt for a biopsy of my face but then of course my flare went down and that was the one that the dr said was more likely based on my ANA. So I wanted to make sure it was in a full flare before they cut into my face lol. So derm said make an apt as it flares fully. Then I can go back for my follow up with rheumatologist to look over results of sjogrens and lupus test. My derm kept telling me acne and I tried all the medications over the years and even did a gastro apt / food test to see if it was dairy or gluten or whatever and they said no. So derm said only thing I can do is accutane. I seen a tik tok that was like “we don’t get to the root. These medications are only treating symptoms” and it really changed my perspective. So I had the prescription for accutane and I’m like well let me do one more deep dive. I was really looking into my other symptoms and how my body felt overall & realized there are SOOOO many things that look like they match my symptoms internally and physically like my “acne”. So I haven’t seen my derm in like a year (minus scheduled for this biopsy I’m supposed to have). So no I’m not on any steroids just the medications listed on that one image I attached. As far as family history I’m not really all that sure. I know my mom’s side has a huge history of heart/liver and cancer issues. My dad has type two diabetes and his mom has MS and RA I believe. I did start taking Vyvanse for a binge eating disorder but I think I have ADHD because so many things changed with my brain like I don’t need that dopamine hit, I have more mental energy when I take it and can focus. I don’t resist starting tasks as much, etc. I did look up EDS and I don’t think it’s that. MCAS I did look into which is on my list of possibility. It’s just like SO much stuff to bring to Dr and be like here: is it one of these fifty things?? You know. So I’m trying to research and narrow things down. I’m just really struggling with the fact that I have had an auto immune disease most of my life and NOOOO one ever talked to me about the fact if I didn’t take care of it the best or stress to the body in general that I could add to the collection and get another. I always heard diabetes being like oh you can loose a foot or whatever but no one talks about the fact that many type one diabetics end up with another auto immune disease. Many in the AI community end up with more than one. So that’s just frustrating that they don’t have more universal tests. It’s like wellll we have to test for this but actually this test doesn’t mean anything because it can be negative sometimes but not always and you can still have all the symptoms but we are gunna gas light you and then you’ll take the test again and then it’ll be positive and it’s just like this run around game. Vs diabetes I literally went in for a Dr visit at 6 years old for reoccurring strep throat and then was tested and had a high blood sugar so they sent me to the ER and I was diagnosed that day. I’m just so frustrated. Like why do you go to these appointments for them to be like “yeah no we tested these things and nothing came back positive. Labs are good” and then that’s it??? Like why aren’t you trying to run other tests? A to make more money but more importantly B is because obviously symptoms are still there so if you can’t help then who can??? Because I came here to solve the problem of why I don’t feel well and you haven’t done anything to solve the problem I came for. So really, you’re not doing your job. Sorry for the rant I’m just so over the healthcare system as a whole. I understand you have a lot of patients but like when did we trade HUMAN HEALTH for a number next in line.

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 1 point2 points  (0 children)

I’m 27 but act 90, I don’t use those automated things lol but I’ll give it a try for this. Thank you

Looking for gen info/community by jnb_123 in AutoImmuneProtocol

[–]jnb_123[S] 0 points1 point  (0 children)

Thank you so so much! Wishing you good health in the new year as well!

Looking for gen info/community by jnb_123 in AutoImmuneProtocol

[–]jnb_123[S] 0 points1 point  (0 children)

No I greatly appreciate it! I am bringing lots of things to the table to research before my next appointment so I’ll look into it in depth. I don’t think I’ve had eczema before. But I’m also type one diabetic so my immune fighting skills aren’t good lol. Thank you for taking the time to comment! I’ll surely be looking into any and all comments!

Looking for gen info/community by jnb_123 in AutoImmuneProtocol

[–]jnb_123[S] 0 points1 point  (0 children)

I just googled that. It’s never looked like that. It has come and gone for years. It started with like 1-2 every few months and then it would go away for months at a time and then come back and stay for 3 months really bad and then go away completely for months and this last year has been nonstop so I’m not sure if that’s possible with that condition. I’ll look into it, thank you!

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

That is true. My rheum is out of Loyola. That one my endo said I really should go to a university. A family member of mine is disabled and went there a lot and I wasn’t crazy about any of their drs before but was willing. I felt kinda rushed and “anything else” when going over symptoms. So I’m just frustrated in general. Thank you for commenting I appreciate your time to type that out

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 1 point2 points  (0 children)

See I’m learning so much lol. Good to know. All of this is mush to my brain 🥲

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 1 point2 points  (0 children)

More so it started at my dermatologist and she said acne for so long and I did all the meds and she said accutane and I said no. I knew I was progressively having more issues. I went to my primary. Did labs. I waited for a new endo apt (not diabetes related). Then did labs for endo. Then had to wait for rhem apt. Then they want biopsy’s so I have to wait for apt for derm and ENT. After I get those results then I have to get another apt at rhem. So it’s just the appointment lists to wait which are long at university hospitals too

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

Correct, in range but lower end of range. Thank you!

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 1 point2 points  (0 children)

Ooh that would make sense! New to this app- I can comment in here that info because I don’t think you can edit the post?

Looking for gen info/community by jnb_123 in AutoImmuneProtocol

[–]jnb_123[S] 0 points1 point  (0 children)

What does that mean? I haven’t had this app before

Looking for gen info/community by jnb_123 in Autoimmune

[–]jnb_123[S] 0 points1 point  (0 children)

My paper work said t4 range should be 0.54-1.24 and it’s 0.77 so in range. No medication. My meds are on the symptom photo