Multiple Auto-immune Diseases ?

@annalia. You have all these AD and they’ve all been diagnosed? WOW! And this all started with hypothyroid? I’m sure that other members will turn up and have similar stories to tell.
And you’re new to Mayo Clinic Connect! Welcome!
There are lots of discussions about all the different AD diseases that you have and you may find them very helpful.

Hi @annelia, I would like to add my welcome to Connect along with @becsbuddy and others. I know it has to be difficult trying to navigate with multiple conditions when just one can be hard to manage. You are not alone and may find it helpful to scan through a list of discussions members have started with multiple autoimmune conditions. Here's a link to the list of discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=multiple%20autoimmune

in reply to @annelia Wow, you have a lot going on, and I am sorry. Addison's disease is rare and can be quite severe according to what I have been told. I am sure you know there are 2 types, one more serious than the other. Have you had testing for the same? Do you have adrenal insufficiency? It sounds like you might need some additional tests to rule this out, and I wonder if you have discussed this with your doctor. Like you , I also have a variety of autoimmune disorders, and tend to just try to"accept" them for what they are, considering that there is no real treatment for them, so I am told. I am very sorry you are suffering. I would encourage you to talk to your clinician, which I know is not always easy. However this site certainly has a lot of good information. What I cannot stress enough is to stay off of "Google," as you will wind up in a rabbit hole of misinformation unless you go to sites that have "real" information such as NORD, NIH etc.
Best of luck.

@annella I have lupus and high antibodies for scleroderma. One of my grown kids has type 1 diabetes, celiac, seizure disorder, and lupus with joint pain, alopecia, Raynaud's etc. She has had most of these since childhood or teens. We both get really sick in the sun. We have been told that one autoimmune disorder makes you more likely to get another.

Some of the things you list, I share, but don't consider them autoimmune. I have afib, osteoarthritis, degenerative disc disease, tinnitus. A bunch of other things.. At a certain age, a lot of us have a long list, unfortunately. If you are young like my kid, that is even worse. If you have been told these are autoimmune, I would be interested...

Addison's, RA are autoimmune of course, and hard to deal with. Raynaud's can be part of an autoimmune disorder, or not, I have been told.

Sorry you are suffering. I think it helps to ask doctors to differentiate health issues you suffer with that aren't autoimmune and those that are. For treatment purposes. Of course it can be hard to tell since autoimmune disorders mimic so many other problems. Do you have a good rheumatologist

@annelia hello and welcome. Autoimmune disease of any kind seems to set one up for others. I guess it’s because our immune system is an “equal opportunity” helper, or destroyer.
I also have multiple AI syndromes. I believe there are many sufferers here.

Again, welcome

Thank you ! .. Yes I have been told one AI can open the door to many , especially if you have been constantly in flight or fight mode for Addison's to develop . I just stumbled on this site so I thought perhaps I can find more information from the users and institution provider. Fingers crossed !

Hello and thank you !
I should have been more clear about what was AI and what was just happening to me, a bit of brain fog was going on when I was typing I think .
I have a rheumatologist , endocrinologist .. who I think has dropped the ball sadly .. he is a nice man, but I question lack of knowledge or experience handling primary Addison's. I have a very good GP which helps a lot.
I'm just tired of handling it all .. my husband has been wonderful through it though, so that really helps.

Hello there
Yes I know primary is rare, which is what I have ..
It really does take a lot of strength to organize yourself to "talk" to doctors .. although my GP is the easiest one ever, so I am grateful for that.
Another complication has arisen which is also rare .. I have a fistula behind my left eye .. it is a matter of opposite blood vessels joining some how .. vein to artery .. and the pounding pressure that is happening .. I have more testing to go through to find out what can be done so that is stressful right now.
I am on Orencia infusions for the RA .. I would like to find others on that medication to see if they find it is really helping .. yes, I know Google can drive you crazy but sometimes there is a grain of information that is valid ? I have been handling most of these for some time so I'm used to what I should pay attention to and what not to. Thanks for the reply !

@annelia my kid had a fistula. Neurointerventional surgery involved putting metal coils in the brain, using wire inserted in the groin. Do you have pulsatile tinnitus from your fistula?

in reply to @annelia Have you checked out NORD? They have a lot of valuable resources in terms of rare diseases. Again, I truly am sorry about your diagnosis, but also glad to know that you have a doctor who you can actually speak to. I may have mentioned that my PCP refuses to talk to me about my PI, and I am lucky if my immunologist responds to my inquiries. I have only met him once; the day he gave me my diagnosis last Spring and I do not have another appointment with him until late November, which translates into, "I do not have a lot of confidence in the medical system." On the other hand, I have an appointment with my hematologist coming up, and I remain hopeful that he will be able to "comfort" me in terms of my fear about this treatment, and also understand my hesitation about getting the treatment for "the rest of my life." There are many nonprofit organizations that offer patient support, and many are easy to find online. I wish you the best of luck.