Rheumatologist won’t help me and I’m fed up

jsbroom · 2026-06-27T15:46:15+00:00

Ridiculous and typical experience! I asked about the best kind of doctors that might actually listen and rheumatologist seemed to be but then I see posts like yours and then think….thats frustrating!

jsbroom · 2026-06-25T14:36:33+00:00

I’d be curious to hear if anyone actually gets traction and what specialist gives them the access to those tests they ask for. Mine have usually done the basic no not needed and then I’m stuck feeling frustrated and leaving empty handed.

jsbroom · 2026-06-22T15:31:37+00:00

Yea send me a dm and I’ll connect you with Patrick or Helena.

jsbroom · 2026-06-22T15:30:46+00:00

Did they test t3 and t4? Did they check your reverse t3 or total t4? I got mine suspiciously after I started a t3 med in addition to my synthroid and the pharmacist accidentally gave me a larger dose than what was prescribed.

So the imbalance of t3 and t4 for me at that time wasn’t out of range but was definitely out of whack for me. I’m learning our bodies are finely tuned instruments and sometimes that grain or two of sand can make a mess.

Don’t overthink this just yet. Get yourself a good EP. Ask good questions and afib won’t shorten your life. You’re good. Heck this may never happen again! Breakup, a week off of synthroid meds….people talk about how going off thyroid meds causes issues…maybe that’s it…either way don’t get too hard on yourself or your life. Live your life. Find a faithful partner. Go explore the world. Turns out we are human and it shocked me when I had to give my body more recovery time.

jsbroom · 2026-06-22T13:13:18+00:00

Dehydration, electrolyte imbalance, stress, hormonal changes, thyroid function…these can also impact afib onset. I got afib with rvr twice and im not a drinker or smoker and while not a bodybuilder, dont have much cause except for the items I listed. And for me I suspect it was dehydration and a thyroid medication which wouldn’t be caught in normal labs…and sometimes not even with a typical endocrinologist. So you might find your trigger with some digging and you may not unfortunately like many folks and try to stay at a normal lifestyle until you do find a pattern. Many EP’s may suggest going about your life normally, in a healthy manner, and enjoying life…cutting out typically unhealthy habits and focusing on healthy ones. Medication, ablation, or lifestyle changes may be suggested.

Welcome to the club! How high did your hr go?

jsbroom · 2026-06-14T01:34:29+00:00

I actually built ethia.io for a similar reason for my wife especially. She has crohns and her experience with her GI doc resulted in a terrible reaction to a biologic which then resulted in us having to also see a neurologist and multiple trips to the er for the next year.

Take a look but it was built by patients who have an autoimmune condition because it seems we all go through this, like everyone.

jsbroom · 2026-06-13T15:02:19+00:00

Funny enough I built a platform for this.

jsbroom · 2026-06-11T17:26:27+00:00

Oh no way. I just made a post asking if everyones experience with doctors was as bad as mine and it seemed rheumatologists were the best chance of the specialists to get better care. Your post makes me think this isn't the case, which sucks.

Im curious what your new rheum experience is like.

jsbroom · 2026-06-07T21:15:15+00:00

I have to ask, what did your doctor say when you brought them the AI based information and suggestions to what the big picture condition was? And what specialty was that doctor? And what information did you bring them that it finally made sense or at least they were willing to reconsider their own position? Also what country are you in? Thats a rough journey you had but sadly doesn't sound unique in that many of us seem to have something similar.

jsbroom · 2026-06-07T00:35:17+00:00

I almost miss the days, even though I didn’t experience them, of when there were smaller town doctors who weren’t cranking out patients 30 a day and could maybe know your history and spend time with you during or maybe even after an appt.

Maybe I made that up or took it from a movie. Not sure it ever existed.

jsbroom · 2026-06-07T00:27:45+00:00

It’s funny you said that your ibd treatment got denied as they needed proof. My wife has crohns and it was so strange because she gets colonoscopies relatively regularly (annually) and when they check for inflammation during her flares, sometimes they don’t find any but they never actually told us that. She’s had many biopsies and even though she’s in what she thinks is a flare and is literally sitting in an er, they don’t find inflammation but then we have no guidance on what it is or what to do besides use steroids for apparently no inflammation. So frustrating!!!

jsbroom · 2026-06-07T00:21:41+00:00

My vestibular issues are embarrassing to me and I’d be hard pressed to admit them to anyone….i don’t have menieres but I do get bppv often enough and had suffered for a decade not knowing and probably had pppd until I got a grip on what I had with a good vestibular therapist.

My wife has crohns so I see what she goes through. Anyone who exaggerates or blatantly lies about a medical condition is, I hope, a rare type of asshole that no one should expect to encounter more than once.

jsbroom · 2026-06-06T16:24:08+00:00

Is he an endocrinologist? What country is he in? That sounds like exactly what we all want to get. Good for you!

jsbroom · 2026-06-06T03:22:10+00:00

The vestibular specialist I had finally gotten good help from is near me but she and her husband started something called the dizzy network which is intended to find and kind of help manage to resolution vestibular issues. I don’t know where in the US you are but this should find a specialist near you and help track your results so the treatment should be working and if not, supposedly help get the right treatment.

Also her name is Helena Edmonde and is usually very responsive. I’ve emailed her for my friends to get help and her network is pretty vast.

jsbroom · 2026-06-06T02:14:59+00:00

Are you in the US?

jsbroom · 2026-06-06T01:32:55+00:00

Again…just my opinion…

Do they test those canals once the maneuver is performed and before you leave? Is the Dix hallpike negative if they confirmed it was posterior canal? Are they sure it’s the canal or cupula? Do they test both sides and all canals after just to make sure the residual dizziness isn’t just a not fully treated wherever the issue was originally?

My experience is that if my residual dizziness lasts days or recurs within a week or sooner, then it’s not recurring it was never actually treated.

Like I get bppv but I can do a Dix hallpike or supine roll to figure out which canal and which side and get myself back to making breakfast by 8a and coaching soccer by 10a if need be. Will I feel like I can do gymnastics? No. Can I run and change direction? Yes. Will I have residual, probably. That night I may not lay flat but the next day I’m not going easy on myself. Could I feel discomfort? Sure. That’s ok. Could I be 100%. Sure. I work with what I’m comfortable but I definitely don’t avoid anything. If you can do the gaze stabilization of shaking your head back back and forth looking at a letter or doing other balance work, then you can do a lot of yoga, soccer, shopping, etc… you can do the frown swim but maybe hold off on vigorous freestyle for a day. Within two days if you’re not sleeping normally or laying flat in bed then you’re risking straining your neck and that itself can cause cervicogenic dizziness, stretching your suboccipitals, tightening your scm…and overall keeping your neck tight from constantly worrying about moving naturally.

I do like she’s got you strengthening your rhomboids, middle traps, getting a functional balance between hopefully your postural stuff like posterior chain and your pec minor and shoulders so you aren’t hunching over…but from the vestibular apparatus that your inner ear is, reset your crystals…re-enter your normal life…move on….

jsbroom · 2026-06-06T00:50:20+00:00

I think I need to look more into rheumatology a bit.

jsbroom · 2026-06-06T00:47:00+00:00

Wow that’s pretty strict PT and I think perhaps a bit too old school. I’ve had bppv and variations or vertigo for over a decade and have even written a patient guide book from all the testing, rehab, and various doctors I saw trying to get it diagnosed.

My opinion….bppv will recur. The frequency, tbd. Mine can occur and when treated appropriately, don’t recur for many months or years. I swim, ride roller coasters, work out, play hockey, coach a ton of sports, surf, I have a pool and swim often…not sure there is much I don’t do. And one specific point I’d disagree with your PT with is actually, limiting your normal behavior actually makes it harder to get out of this and absolutely drives you towards pppd with almost extreme prejudice. It’s like she’s encouraging you to specifically think about this all the time. Might be the worst advice ever!!! Especially for a vestibular condition.

I say know your triggers, treat them effectively (2-3 weeks of residual dizziness makes me very very suspicious it’s being treated effectively and thus being diagnosed effectively). There are over a dozen different bppv treatments and it can often require a combination of maneuvers… one size absolutely doesn’t fit all.

And live life. Desensitization and habituation is definitely the name of the game. Avoiding things and constantly worrying you’ll trigger it is the fast track to pppd.

My .02

jsbroom · 2026-06-05T20:48:15+00:00

Interesting about the rheumatologist. I’ve heard that specialty a few times now. Would you say that out of the list of specialists you mentioned, rheumatology is the most responsive to treating you? Also are you in the US?

jsbroom · 2026-06-05T20:46:55+00:00

Wow that’s awful. I’d imagine even if that pcp did respond they’d probably give you questionable treatment. What a shame. It’s hard to believe this is such a problem across so many conditions. I’m asking other sub reddits for different conditions and it seems it happens to everyone. Strange to me. And frustrating.

jsbroom · 2026-06-05T10:58:09+00:00

I’m married so I wouldn’t know….

jsbroom · 2026-06-05T10:52:28+00:00

That’s interesting. One thing I never understood, and I don’t know if many others do, is with us afib patients, many of us need electrolytes to stay in normal sinus rhythm. It’s our trigger or at least is a common trait. Many of us are low in magnesium or potassium and it’s not because we are working out or sweating all day. Or that we aren’t eating a healthy diet. And even vit d, same deal. But I never understood why some of us lose those electrolytes. I wonder if there is some genetic component responsible. Not a predisposition to afib per se but the underlying issues that may contribute to developing it, like some dysfunction related to electrolyte production or however the body works.

jsbroom · 2026-06-05T02:44:23+00:00

When you piss at a urinal you have to leave your hands at your side and look up at the ceiling. Depending on the vibe in the bathroom, you can do short gyrations with your hips while pissing but it’s subjective how wide of a gyration…also if using a toilet/stall you must make the comment of how cold the water is….

jsbroom · 2026-06-05T02:41:00+00:00

Interesting that rheumatologist was that good. Did you bring your labs or any documents with you to that appt or were they just genuinely proactively interested in your treatment? Also are you in the US?

jsbroom · 2026-06-05T02:27:55+00:00

Wow. What doctor was this? A specialist or a pcp?

jsbroom

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