Hi! It would help me to hear from other people who have multiple autoimmune diseases; how are you managing, both physically and emotionally? In my case it’s T1 diabetes (51 years), Graves Disease (30 years) and Addison’s Disease, as of last fall. I think I’ve had the latter one much longer, but it had to get really bad before they’d diagnose and treat it. I also have psoriatic arthritis and a couple other minor things. The bin I’m in is labeled, “Poly-glandular Autoimmune Syndrome”, and I’m not adapting to it very well. Gah! Are there others like me out there?
I find it much harder dealing with multiple conditions compared to just one. It’s like they compound one another and get exponentially more difficult with each new diagnosis.
I have probably a dozen different conditions major and minor (including Type 1 diabetes and Graves’ disease, the latter of which has been in remission for over a year now, thankfully). Currently my health is the best it has been in years, but just over a year ago it was the worst it had been in years. Dealing with that much variability is so difficult.
And, even with my health being really good at the moment, the daily management that goes into all my various conditions is ridiculous at times. I often don’t realize how much extra time and effort it all takes until I spent time with people who don’t have to worry about managing multiple health conditions. I make it work and I manage to still work, volunteer, and travel, but it is not easy at times. It wouldn’t take much to be in a place of struggling again.
Hi Jen! Thank you for answering. I agree each new disease interacts with the other(s) making it all MUCH harder to manage. I’m so glad your Graves is in remission now. May it ever be so!! I’m impressed you can can do all the things normals do on top of your physical challenges. I love hearing your health is the best in years. Bravo!
I was doing ok, but as the adrenal insufficiency worsened, I needed an increasing dose of levothyroxin and less and less insulin. I was down to a total daily dose of like 13 units, +/-, about half what it used to be! Crazy! Now that I’m taking the necessary cortisol meds, insulin requirement has raggedly risen back up to what is was, while my amped up thyroxin need is tapering off.
When my bg is lower, say 100 range (US), I get super insulin sensitive, and easily tank. Much above 150 and insulin resistance kicks in, then increases more steeply than it did before the cortisol. So frustrating!
T1 Diabetes, Rheumatoid Arthritis and Ankylosing Spondylitis. Gotta love the multiples among us.
Oh Ouch!! How did you learn you have Ankylosing Spondylitis? I’ve wondered if my Psoriatic Arthritis was really AS? Thanks. And hdo you cope with the chronic pain?
I was thinking about asking a similar question. I have (in alphabetical order)
Recurrent Corneal Edema Syndrome
The only one with any benefit is hyponatremia because instructions are ‘eat a lot of salt’ unless and until my BP increases too much (It’s in a very good range right now).
Taking care of all this is getting very old… just like me
I don’t have other autoimmune diseases (knock on wood) but I have, in addition to T1, Ehlers-Danlos Syndrome, POTS/dysautonomia, and Mast Cell Activation Syndrome (an immune system issue, but not autoimmune). The last three are all interlinked. They all make dealing with each other much more difficult! Honestly, most of the time, my diabetes is the least of my concerns these days, but it really sucks when the thing to do to potentially help one aggravates another condition. Also my MCAS definitely messes with my insulin sensitivity when activated.
I tend to suspect that the majority of people w diabetes who relatively easily achieve tight control are unlikely to be the folks balancing multiple complex medical conditions.
I also have to eat high amounts of salts for my POTS/dysautonomia, as well as hydrate a ton. I drink a lot of Gatorade Zero, and have increased dietary salt intake, as well as sometimes take salt capsules if I’m going to be more active in warm weather. It’s funny and also sometimes annoying how many people assume low sodium = healthy—not for everyone!
Hi Paytone. Thank you for sharing this! And condolences on your long list. Arghh! Your hyponatremia catches my eye - I had that for years, (Yay! Eating salt out of the shaker!).
I later saw a movie that mentioned President Kennedy had Addison’s which made me curious. I looked it up and found I had most of the symptoms… My GP tested me, but said my cortisol response was in range. A few more years pass until my symptoms became crippling (last summer). I still tested in the “gray zone” at the bottom of normal for cortisol. But an endo gave me cortisone replacement to see if it helped. It so did! Way less low blood pressure incidents, normal blood salts, etc.
A big enough stress event could have killed me in those years before diagnosis!
So bottom line, I had adrenal insufficiency for probably a decade before I got treatment. I’m told the gland has to be 90% toast before symptoms meet current diagnostic standards. I’m guessing there are many more like me out there, suffering needlessly. If you start having low blood pressure incidents, make the MDs do thorough deep testing for Addison’s.
Geez, cardamom! You are making me feel lucky, sad to say.
I looked up all those conditions you have and they sound horrendous, painful, and barely treatable. How do you manage? Are there people in your life, medical or family who get what you go through on a daily basis? I hope so. Just feeling loved helps, even if no one can quite imagine a reality people like us exist in.
I agree, having “just” diabetes would make perfect control a lot more likely. Thank you for answering my post. It makes me feel less alone.
I am very high functioning given those diagnoses—EDS sucks, but varies a lot by person, from being subclinical (they have the gene but it doesn’t interfere enough that they technically meet criteria for a clinical dx) to being profoundly disabled by it. My presentation is definitely not as severe as many for all three of those conditions, again, knock on wood. I have a successful f/t career, but it’s hard, and I only was able to get to that point thanks to having enough financial privilege and parental support to allow me to do some of my schooling part-time early on while dealing with the worst of some it without needing to support myself and while accessing excellent medical care. Makes a huge difference, especially in this country.
My partner has a different chronic illness, which sometimes makes it hard when we are both exhausted, but it also means she really gets it and provides excellent support (and I think she’d say the same about me).
Diabetes Type !
How does Sarcoidosis affect you and how do you treat it?
Type 1 dx 1959
Hypothyroidism for decades
SIADH Fall 2019 so on strict fluid restriction
Hyponatremia Fall 2019 lots of salt
Anemia since 2019
Heart stents 2010
Sudden blood pressure drops which cause me to faint.
Bladder cancer 2010
Life isn’t a picnic, but could be worse.
I am really wanting 10 more years.
Currently, it is non reactive and I do nothing. Many folks take steroids for it.
Earthling, I wish I had a do this reduce pain formula. But the best I can say is that my biologic is working right now and that makes things better. Unlike RA, AS does not react as well to the biologic as I would like. I use a supportive chair, I exercise and I realize things always get better with time.
What biologic are you using? Because of a bad reaction to TNF inhibitors I have to use a medication for RA instead of AS. So I am using Rituxan.
Hi Marilyn. I remember a thread from last fall when you were needing diagnosis. Your symptoms are so similar to those of Addison’s - what is SIADH again? And if you follow the protocol, do your symptoms abate?
For me, taking cortisol helps a lot with the low BP episodes, but I still get them now and then, especially if my BG goes double arrows up after food. Or if I get otherwise stressed by events. And I have to change my basal rate constantly, as it never stays the same for more than a couple days.
I too have anemia, since the late ‘90s. My last blood draw showed that my hematocrit was low and my RBCs are enlarged and kind if spongy(?) So I’m supposed to go to a Hematologist. Too many doctors!
What is Osteopenia?
I am taking Humira weekly, but it isn’t really doing much good anymore. I see my rheumatologist this month, so I hope we can figure out a more effective medicine. I also have scalp psoriasis and Humira does next to nothing for it. Of course, I may eat my words after I stop taking it. Sure hope there’s something better, though. Very tired of constant pain and itching.
Do you also take Methotrexate? I had to try it before I could try other biological, but it gave me flu symptoms for 2 days after each dose.
Rituxin sounds dicey, on side effects. How many and which vertebrae are fused for you? Have you lost height? Where and what time of day I s the worst pain.
I understand if you don’t want to expand on the topic. I ask only for comparison, since no one will run the tests to clarify what version of arthritis I’m experiencing. I guess the logic is that the treatment would be the same, so why spend the $ on a Medicaid patient.
So let me see if I can answer the questions.
I do use mtx as an injection. I find it does a good job with short term Inflammation. I understand about the ill effects of mtx - I hate it. There are other medications that might work for you if mtx does not ARAVA comes to mind as a good suppressant
Rituxan is my 5th biologic and it has been so good for me. I also used remicaide for several years and liked. It.
Height wise I was once 6’4” I am now barely 6’ My main issue is kyphosis. You can read about my this issue at my web site www.RADiabetes.com. I wrote mostly about arthritis these days since I get paid to do so.
I have two kyphosis articles up right now as I am preparing for surgery on March 5. This surgery should restore some of my height.
AS is terribly difficult to DX. The first thing is if you have the gene mutation HLA-B27. It is a simple test and it is usually thought to be the gold standard to determine if it is possible that you have AS. If you lack the mutation it is unlikely you have AS.
Then the determination is clinical. In my case I had signings t narrowing of the spine around the nerve channel in my lower back. It required surgery and with that we knew I actually had AS.
My rheumy remained skeptical int the surgery.
Did I miss anything? I am in my phone so if I did I will look in on our discussion this evening and catch up.
I am pretty much an open book so if you have questions I am happy to answer.
Thank you for the info!
I have lost an inch and a half in just a few years. My L5 fused to my sacrum 10 years back; that was after I had a fusion at the C4-C5 level in ‘08. The surgeon said they just let go of each other(?)This damaged my spinal cord such that I lost much balance, dexterity and feeling, sadly. But I can walk and do so daily. He also said that not only my fusion fused, as intended, but a couple other cervical vertebrae did as well. Plenty of neck and low back pain on a regular basis. I feel ok during the day, though, after a rough wake up, and a cross legged sit during coffee in the am. Pain returns in late afternoon.
Maybe I will ask my primary to check for HLA-B27 on my next blood draw.
Did the surgery to open up the spinal nerve passages help much, and for very long?
SIADH stands for Syndrome of Inappropriate Antidiuretic Hormone Secretion
It was found because over the last few years my sodium levels would dip too low and then this fall became dangerously low and I was appearing to have had a stroke, but I hadn’t.
It means that the kidneys are holding on to fluid. This causes hyponatremia.To control it I strictly limit fluids and eat a lot of salt and take salt capsules.
The biggest question is why do I have this condition. I am being tested for several kinds of cancer, and so far I test negative. I don’t appear to be taking any meds that can cause it. The nephrologist offered no help whatsoever in helping us find a cause. I have waited 3 months to see another specialist and I will see what she has to say.
Osteopenia is bone loss and I believe most older women deal with this. It isn’t a big deal until it turns into osteoporosis.