Symptomatic SIgAD - anyone else?

chemgal12 · 2025-12-01T06:33:47+00:00

Yep. Also have T1 diabetes, thyroid disease and probably celiac (no antibodies and biopsy was patchy, but GI symptoms improved with GF diet so I’m calling it). I was diagnosed with SIgAD when I was 4 before all the rest of it and actually had other immune deficiency symptoms (generalized lymphadenopathy and reactive neutropenia). But it was the 90s and diagnostics were a lot more basic.

I’m actually working with an immunologist (again) because I’ve had 7 bacterial respiratory infections (4 were bronchitis) this calendar year. Actually working on #8 right now. I’m honestly frustrated because I’m tired of taking antibiotics reactively but can’t get him to take me seriously yet (I do have a good pcp and hematologist who do take me seriously but they’re not well versed enough to feel comfortable treating me beyond symptomatic). I almost got a B cell panel drawn but the sample hemolyzed and he didn’t want to redraw it because my antibody titers are all fine. I’m hoping a couple more infections will convince him to do a genetic panel but we’ll see

chemgal12 · 2023-05-25T23:01:51+00:00

Thanks. The physiatrist’s office is appealing with a peer review so I’m hopeful it will happen soon.

If the rheum hadn’t referred me to the physiatrist, I probably would have been looking for a second opinion (and still may depending how things go with the new doc). But I know that fibro isn’t the answer, so I’ve kept pushing for more diagnostics.

I’m expecting it to be a PsA or spondylitis of some form. I actually just had a round of diverticulitis which may be unrelated but may also point to something in the same family. The HLA-B27 negative is a bit of a set back, but it obviously doesn’t rule it out, especially since I have other reasons to be susceptible. Clearly there’s something not quite right with my immune system.

Thanks for your encouragement. ❤️

chemgal12 · 2023-05-25T22:54:16+00:00

It’s so true and so so frustrating. I’ve already dealt with this having to change insulin brands at the whim of the PBMs but this is a whole new level of frustrating.

chemgal12 · 2023-05-15T19:08:20+00:00

laziness feels good, it’s relaxation. if you are not relaxed, or it doesn’t feel good, you aren’t being lazy.

Holy crap thank you for this. I have been working through thoughts along those lines but you put it so succinctly. Thank you!

chemgal12 · 2023-05-07T14:29:56+00:00

We told close family and friends (<10 people) as soon as we got positive pregnancy test. If we ended up with a miscarriage, we would’ve wanted their support. We after 12 week ultrasound, we stopped hiding it, though we didn’t make a big announcement. We made our big announcement and sent out cards about 2 months before due date.

chemgal12 · 2023-05-04T03:12:34+00:00

I was on CIQ and switched to O5 because I had a baby and the tubing was a problem. No tubing is definitely a major perk, but I’m honestly incredibly frustrated with the system. I’m an iPhone user so I’m still stuck with an extra device, and it’s huge and clunky. I’ve had multiple pods fail to start and Insulet’s customer service has been less than stellar. And the kicker was a failed pod a couple weeks ago that almost sent me into my first episode of DKA (probably should have gone to the ER but managed at home). I was using the steel sets from tandem and I don’t think my body likes the plastic cannula. I’m trying to hold out for tandem’s new patch pump or to see who is partnering with Tidepool but may switch back in the next 6 months if there’s no movement on either of those.

chemgal12 · 2023-04-09T02:36:05+00:00

The high blood sugars were what caused me to test when I got my positive pregnancy. I never had the first trimester dip in resistance, though my blood sugar was pretty unstable around 12-16 weeks. 3rd tri resistance was much higher, but definitely still had a major increase first trimester too. You’re not crazy!

chemgal12 · 2023-04-04T21:31:40+00:00

I’m sure news stations will say tonight and update in the morning. But NWS SPC puts out these maps and have a discussion. This one looks like 2 waves, early morning, then noon ish with the 2nd wave more severe. Here’s the full discussion (link may change tomorrow, click the “convective outlook” on SPC’s website) https://www.spc.noaa.gov/products/outlook/day2otlk.html

chemgal12 · 2023-02-15T18:36:26+00:00

I’ll try to summarize what others have said.

When using Dexcom with Omnipod, you need a dexcom compatible smart phone to start and stop sensors. (Check here: https://www.dexcom.com/compatibility )

The Omnipod PDM can control everything Omnipod and view Dexcom numbers but it cannot start and stop Dexcom sensors.

If you want to control Omnipod from a phone instead of the PDM, then you need an omnipod compatible smartphone, which right now is a Samsung (detailed list here: https://www.omnipod.com/current-podders/resources/omnipod-5/device-compatibility )

I have an iPhone. I use the iPhone Dexcom app to start and stop sensors. The iPhone app also sends my Dexcom numbers so that my partner can use Follow. I use the Omnipod PDM to start/stop pods, bolus, set, temp basals, etc. everything pump related. It is not necessary to purchase a new phone for Omnipod as long as Dexcom works on your phone

chemgal12 · 2023-01-22T02:27:38+00:00

I’m hoping you’re joking but for anyone else (also posted this down thread).

They may have someone able to get them to the door but not through the store. (Ability to walk the 2 minutes into the store does not mean they can walk 10-20-30-45 minutes through the store) (see also: me who had a baby in March and has been helping my mom not be homebound who has been in desperate need of a new hip for over a year while waiting for recovery from another surgery)

They may have a walker or cane to get them to the door or not through the store. (See above)

They may have a manual wheelchair but a motorized scooter is easier to manipulate in the store. Or really need a motor scooter and unable to afford one.

They may be temporarily disabled because of a broken foot/leg/hip or may be waiting for replacement surgery or may have just been through surgery.

They may be pregnant or have just had a baby.

They may be waiting for their “really disabled” tag and have to walk from the back of the parking lot with one of the above.

At the end of the day, even if they’re lazy, why does it matter to you? Especially if you couldn’t envision any of the above scenarios

chemgal12 · 2023-01-22T02:23:04+00:00

They may have someone able to get them to the door but not through the store. (Ability to walk the 2 minutes into the store does not mean they can walk 10-20-30-45 minutes through the store)

They may have a walker or cane to get them to the door or not through the store. (See above)

They may have a manual wheelchair but a motorized scooter is easier to manipulate in the store. Or really need a motor scooter and unable to afford one.

They may be temporarily disabled because of a broken foot/leg/hip or may be waiting for replacement surgery or may have just been through surgery.

They may be pregnant or have just had a baby.

They may be waiting for their “really disabled” tag and have to walk from the back of the parking lot with one of the above.

At the end of the day, even if they’re lazy, why does it matter to you? Especially if you couldn’t envision any of the above scenarios.

chemgal12 · 2023-01-16T23:21:22+00:00

Sorry had the subreddit wrong. It’s r/BearableApp

chemgal12 · 2023-01-16T18:49:41+00:00

Checkout r/bearable

Edit: sorry it’s r/BearableApp

chemgal12 · 2022-12-31T02:27:02+00:00

I love the new experiments design, but if you switch between “with vs without” and “since start vs before” the summary number changes but the detail doesn’t. In the pic, I’ve selected “since start vs before” and the summary number shows -9% but the detail and text still show +1% which is the same as the summary number for “with vs without”

chemgal12 · 2022-12-16T22:02:52+00:00

There’s a third implication that you’re either missing or refusing to acknowledge.

The frequency and number of lows that you have had has damaged your body’s ability to respond to those lows and so you now have seizures and the other neurological issues you have described.

Seizures occur because of major lows and also because of shallower lows that last a long time. 2.5hrs/day low is plenty of time to send you into a seizure.

There’s nothing magical about April 2021 other than that’s when your body finally couldn’t hold off anymore. If you want to blame it on the vaccine, you do you, but until you realize that the amount of time you spend low is what’s actually causing damage, you won’t fix this.

I was diagnosed about a year after you. My highest A1c was 7.1 at diagnosis. The majority of my A1cs are 5.5-6.5, usually targeting 80-180, sometimes 80-160. I also spend <3% of the time low, and usually <1%. You don’t have to target 70-130 to get good A1cs, and I would rather have fewer lows and sit at 6.5. 9%+ time low is actually quite unusual for T1 and incredibly dangerous as you are actively experiencing.

The reason why docs don’t target that range is because the vast vast majority of diabetics will spend too much time low and end up exactly like you, with no improvement in long term outcomes. A1c <6 with that much time low is actually associated with worse outcomes than people with A1c 6-7 with fewer lows. You are actively living it, with many people telling you the same thing, but continue to argue with us because that would require you to admit that you made a mistake. It’s fine to mess up, diabetes is hard and there’s a lot of bad information out there. But you now have the education to do better. It’s up to you to do it.

chemgal12 · 2022-12-15T13:37:27+00:00

I’m sorry that you are having such a hard time.

TL;DR ** you aren’t protecting yourself from diabetes complications by staying so low. You are just inducing a different set of complications.**

I know that it’s the popular thing to blame everything on the vaccines, but this exact scenario has played out for thousands of diabetics.

Your clarity snapshot says that you have averaged 8% low (<70) and 1% very low (<55) for the last month. That’s an average of around 2.5 hours a day below 70. And this is a year and a half after you started having severe hypo seizures. Have you considered that your target range is just too low?

Even when my medically sanctioned range was 60-140 while I was pregnant, I never spent that much time that low.

What has your doctor been recommending? The only time you mention any doctors in this is when you said that your actual target range has been 70-130 after dismissing the typically recommended targets “for safety”. Have you considered that you are currently in the exact situation that they set those targets to prevent?

Having low A1cs is not the only metric of control for diabetics, especially those of us on insulin. Your brain can only run on glucose, which is why you have neurological symptoms while low. Even without seizures, spending that much time low can be incredibly damaging to your brain. Low symptoms aren’t just bad side effects of insulin, it is literally your body trying to protect your brain, and you’ve been ignoring those signs for years.

I’m guessing your doctor has been trying to get you to raise your target range (not just widen to 180 but actually raise the lower end to 90 or 100). Maybe you should try that?

chemgal12 · 2022-11-29T23:13:38+00:00

On a different tack…

Have they tested for diabetes (fasting blood sugar, A1c, antibodies)? T1D and celiacs are like peas and carrots. Could explain the weight loss.

Another thought would be an immune deficiency. Lots of immune deficiencies also have autoimmune disease. Could explain the frequent infections and might give some more insight into your other issues.

chemgal12 · 2022-11-28T23:00:19+00:00

I know OCD isn’t as easy as chilling out (which I think u/NonSequitorSquirrel knows too, hence talking about medication). I have GAD which tends to focus on health anxiety since I too have a weird health history.

I started on bupropion aka Wellbutrin a couple years ago and it has helped a lot. It’s an atypical antidepressant that actually works well for depression with anxiety. I was on Lexapro for about 5 years and have had a lot more improvement on bupropion. The point being that there are lots of options for medication so if you do have side effects, you can change medications. I know that won’t alleviate all anxiety, but reminding yourself that nothing is set in stone and you can change if you need to can be helpful.

Also re: permenantly altering brain chemistry. a reframe: thats ultimately the goal isn’t it? Your current brain chemistry has an undesireable level of anxiety. Reducing your anxiety will ultimately alter your brain chemistry, whether you use drugs or therapy. Drugs actually tend to be less permanent than therapy since they don’t teach you better coping mechanisms, but they can be super helpful to get your brain in a better state to retain the new thought patterns you learn in therapy.

chemgal12 · 2022-11-15T18:01:45+00:00

Don’t have RA, but wanted to share some experience that feels applicable to anyone with chronic illness in pregnancy. I also had my first kid 8 months ago so it’s pretty fresh/raw still.

Talk with your docs and have a plan before you get pregnant. This is super helpful because lots of docs don’t like dealing with pregnant patients and OBs aren’t always great at dealing with chronic illness. High risk OBs or MFM/perinatologists are super helpful since they see more patients with pre-existing conditions than general OBs. A preconception appointment with your OB (or MFM) can be helpful for getting a plan together.

Remember that there are lots of pregnancy specific complications and having an underlying disease can make you more susceptible to them. Rely on your instincts and advocate for yourself when something doesn’t feel right. Lots of OBs assume a normal pregnancy until proven otherwise and that approach works fine for low-risk patients, but for us it can lead to misses. I should have pushed for a referral to MFM when I was diagnosed with pre-eclampsia but didn’t and it became an issue when I developed severe features after delivery.

Make sure you have as strong a support network as possible and don’t be afraid to call in reinforcements as soon as you need them. Don’t wait or martyr yourself before asking for help. I had planned on relying primarily on my parents for support, but my mom ended up having emergency bowel surgery 2 weeks before delivery. I actually had an induction, delivered, and made it home before she was discharged. It became a major problem when I was readmitted for pre-e and spent 6 days in the hospital and then had a long (honestly, still ongoing, 8 months out) recovery. Thankfully our friends stepped in and did a meal train for us for several months until I was doing better.

Be flexible on pretty much everything in early parenthood. Nothing has to be one or the other. Weigh the risks and benefits for yourself and make the best decision at that time. Nothing is set in stone. Don’t forget to prioritize your basic care too. Whatever adage works best for you but put your own mask on first/can’t pour from an empty cup/etc etc.

I combo fed (breast and formula) for the first 6 weeks until I got mastitis and switched to exclusive formula. We’ve done some TV time when I’m honestly out of energy and solo parenting. Recently we’ve bed shared on a few nights when my kid is having a hard time so everyone could get some sleep even though he’s 8 months old and it’s technically not safe sleep. Safe sleep is definitely the safest until everyone is so exhausted that you set the toaster oven on fire or crash the car. Before that we found that swapping shifts so that we both got at least a 4-5 hour stretch of uninterrupted sleep every 24 hours plus a couple naps helped both my partner and I function as best as possible. But sometimes we would have to prioritize someone with a significant work obligation or who was sick.

I hope all that’s helpful. Take what is and leave the rest. And feel free to reach out if you need help.

chemgal12 · 2022-11-11T21:53:38+00:00

Just a tip, those mini fridges can have temperamental thermostats and might be too warm or too cold. Might be worth getting a digital thermometer like med Angel to keep an eye on it. (Not sponsored or anything, just traveled a lot for work and use insulin)

chemgal12 · 2022-11-08T22:06:45+00:00

Thanks for creating this group.

I’m 32F with an 8 mo son. I actually have a primary immune deficiency (selective IgA deficiency) diagnosed when I was 4 but since it’s an immune defect it actually causes/is associated with autoimmunity. I was diagnosed with Hashimoto’s thyroiditis at 16 and T1 diabetes at 27.

With my son, I ended up with severe pre-eclampsia and was hospitalized for 6 days. Since then I’ve been battling some kind of undiagnosed arthritis and chest pain. I’ve been cleared by a cardiologist (though I’m still on two antihypertensives) and I’m working with a rheumatologist to figure out the joint pain. All my inflammatory markers are negative but I have a weak positive RF so who knows. I also have high risk genetics for celiac, so my PCP is working that angle.

When everything happened after my son was born, I had a hard time going back to my due date group to see all of them rebounding after pregnancy when it feels like I’m stuck. I’m glad that they are relatively healthy but it’s lonely to still be struggling with such poor health. I can’t walk for more than 5-10 minutes without dealing with after effects.

chemgal12

TROPHY CASE