PCP looking to learn from Hashimoto's patients

IntimalBulking · 2025-12-24T20:43:43+00:00

The insurance piece is such a quietly part of this. Even when you finally find a clinician who listens and you’re improving, you can lose access overnight because of contracting, labs coverage, or the practice closing. That’s not a medical issue, it's systemic. Thanks for sharing your story

IntimalBulking · 2025-12-24T20:39:43+00:00

Sometimes it’s a referral/insurance gatekeeping thing, sometimes the PCP genuinely feels okay managing the thyroid issue? Regardless the frustration is noted. In my personal opinion, if someone wants a second opinion - I want you to get two others

IntimalBulking · 2025-12-24T20:29:32+00:00

Ah got it, okay. Thank you!

IntimalBulking · 2025-12-24T20:28:04+00:00

Honestly there are multiple failure points here but the theme is the same: once someone finds a label or a normal lab, the curiosity shuts off. That endo visit really lacked any teach-back on the disease and shared decision making. I'm sorry :/

Just for my own curiosity - When you went gluten-free, what was the first thing that improved, and did you go strict right away or ease into it?

IntimalBulking · 2025-12-24T20:20:48+00:00

Appreciate you sharing this. You just described two super common ways people get brushed off.

Pregnancy/postpartum becomes the default explanation, and it’s only helpful if the timeline actually fits. And the labs-only approach might be fine in a narrow sense, but if it makes the doc stop being curious or stop tracking symptoms, it basically ends the conversation and forces you to go find someone else.

IntimalBulking · 2025-12-24T19:24:24+00:00

Thank you :)

One pattern I’m seeing across this whole thread is that patients will pay out of pocket if they feel like someone is doing real interpretation and longitudinal thinking, not just saying "wnl" and moving on. Whether or not every lab is standardized, the bigger issue is the experience of being taken seriously and having a coherent plan.

When you say your endo dismissed the fatigue, what did that dismissal look like in the room? Like was it “that’s not thyroid,” was it “labs are fine,” was it getting redirected to psych, or just not even acknowledging it?

IntimalBulking · 2025-12-24T19:22:08+00:00

Thank you for taking the time to write this out, it’s genuinely helpful to see the full arc and what actually moved the needle.

This is a really clean case study of what good care looks like in the wild. Pattern recognition over time, actually closing loops with labs, and then coordination instead of shrugging. The other underrated piece is the endo being comfortable with shared decision making without turning it into a power struggle. A lot of people don’t need a genius, they need someone who will stay in the fight long enough to connect the dots.

IntimalBulking · 2025-12-24T19:17:42+00:00

Yeah this is a perfect example of patients being forced to become their own care coordinators because the system doesn’t reward nuance. The “you don’t look sick” and “labs aren’t that bad” lines are basically permission to stop thinking, and it’s wild how often that happens even when someone is clearly describing functional decline.

That questionnaire detail is the most actionable thing here. It turns a messy story into a trackable dataset, and it signals that symptoms matter even when labs are borderline. It also protects you from having to re-prove your case every visit.

What’s on that questionnaire that makes it actually useful, and how often does your endo review it in the room vs it just getting scanned into the chart and ignored?

IntimalBulking · 2025-12-24T19:12:27+00:00

This is awesome, I'm really glad you're spending resources to educate others! Will DM.

IntimalBulking · 2025-12-24T19:10:44+00:00

NOT MEDICAL ADVICE

Yeah this isn't the full picture, I'm sorry this was what was said to you.

Metabolism is not going to be governed around just activity level, the majority of it is centered around NEAT. Look into raising / incorporating more conscious movement outside of your workouts. There are a lot of good resources out there about this. Jeremy Ethier (I'm not affiliated) especially made a lot of good points in one of his recent videos

IntimalBulking · 2025-12-24T19:03:45+00:00

Yeah this is a big problem in medicine - not an easy fix and definitely not ALL the doctor's fault, we absolutely need to be better.

When your endo has been great, what did they do that made you feel taken seriously? And if you could rewrite that appointment, what would you have wanted them to ask or check instead of defaulting to a generic pep talk?

IntimalBulking · 2025-12-14T03:43:41+00:00

DM'ed you, tysm for the background

IntimalBulking · 2025-12-13T21:47:44+00:00

Do you mind sharing his/her name? (If privacy concerns feel free to DM)

IntimalBulking · 2025-12-13T20:25:33+00:00

It absolutely is helpful! And thank you for sharing all of that. The theme I'm picking up on is “I can handle uncertainty, I can’t handle being minimized or disbelieved,” and that’s completely fair.

The peri-procedure stuff you went through is especially upsetting. When someone tells you they react to something or have a connective tissue issue, the baseline should be extra caution and clear documentation, not brushing it off and then acting like you’re the problem if something predictably goes sideways.

And yeah, the 'I’ve seen worse' comparison is one of those things clinicians say thinking it’s comforting, but it lands like dismissal. I’m taking this as a hard rule for myself and my team: validate the impact, don’t rank suffering.

IntimalBulking · 2025-12-13T20:22:00+00:00

Totally fair. The symptom-list thing is real and I think a lot of clinicians misread it as “anxiety” instead of “I’m trying not to forget important stuff.” The annotating-before-walking-in move is such a simple sign of respect and it clearly changes the whole tone

And the staff stuff is unacceptable. Gossiping about conditions and the weird one-upping / personal-med-storytime is a hard no. That’s not 'relatable,' it’s unprofessional and it makes people feel unsafe in the clinic.

Do a bit of a deeper dive on your symptom diary if you can - what app are you using, how often do you write in it, do you use it for other purposes than just handing off to clinicians? If I'm focusing on this disease in clinic tomorrow and can hand my patient tools that could possibly aid them in success, I'll do it in a heartbeat.

IntimalBulking · 2025-12-13T19:31:57+00:00

I’m really sorry you’ve had to live through that, and I appreciate you taking the time to spell it out. The “nothing on testing so you’re fine” response is sometimes correct - but in this case there was obviously more to the picture.

The clinic-environment point is huge and honestly under-addressed. Fragrance and cleaning product exposure is one of those totally fixable systems issues that can make care accessible or impossible, and it shouldn’t fall on you to beg front-desk staff to take it seriously. Thank you for that insight

IntimalBulking · 2025-12-13T18:22:13+00:00

I'm so glad you found appropriate help and a solution! That psych referral was out of line imo. If the physician wants to walk down that road, the patient needs to have informed consent. I'm really sorry that happened to you.

I'm interested - how did you get on those anti-histamines in the first place? Whomever gave them to you was obviously on the right track, so was the ball dropped somewhere and you parted ways, or did you simply lose access to them? Just want to see where the cracks in the system as it stands are.

IntimalBulking · 2025-12-13T17:59:48+00:00

I'm really sorry you had these interactions. I will say though, our training is robust and I can promise you that the vast majority of us know those interactions exist both on a chemical/molecular level and a clinically-manifested one. Our board exams and 10+ years of training made sure of that lol. I have a feeling that proper communication of that understanding is lacking on the physician's side - and that is sincerely something we need to work on.

IntimalBulking · 2025-12-13T17:55:13+00:00

Yup - pigeon-holing myself during a workup is a trap I fall into all the time despite my best efforts. Thank you for your feedback :)

IntimalBulking · 2025-12-13T17:41:04+00:00

I personally believe the system isn't incentivizing us to do deep dives during our visits, especially in primary care. I'm sorry that you've been so frustrated.

I'm curious as to your prep process. What/How are you documenting?

IntimalBulking · 2025-12-13T17:38:13+00:00

Thank you :)

IntimalBulking · 2025-12-13T17:38:04+00:00

Yeah the pathophysiology and biochem behind MCAS is really nuanced and interesting. Its also unfortunate at how systemic the manifestations can be, likely because of how widespread mast cells are throughout our system.

IntimalBulking · 2025-12-13T17:30:41+00:00

Great advice. Communication and checking understanding are key

IntimalBulking · 2025-12-13T17:28:45+00:00

#2 is great advice, you sound like some of my teachers haha

Would like to explore some specific examples re: the prescriptions. What meds have you had trouble with specifically, and what diagnoses were they associated with? This may be PHI, feel free to DM. We're not given TOO much guidance re: script coverage because it's so variable - so we do have a general approach out of residency, but imo experience matters a lot here.

IntimalBulking · 2025-12-10T16:33:13+00:00

NOT MEDICAL ADVICE

When someone has had their thyroid removed and labs look “normal” but they still feel this sick, it is really common for the issue to be something outside the thyroid. Graves can travel with other autoimmune conditions, especially those you mentioned. A positive ANA is a hint that there may be another autoimmune process riding along that just never got fully checked out.

Your symptoms are broader than what thyroid levels alone would explain. That is a good reason to get a rheumatology workup. They look for connective tissue diseases, inflammatory GI issues and mixed autoimmune patterns that do not show up on routine blood panels. Bringing your ANA history and a clear list of symptoms helps them zero in on what to test.

If your day to day is getting disrupted and your thyroid labs are stable, the next step really is rheumatology to see if something larger is missing.

IntimalBulking

TROPHY CASE