u/apomorph_10165133

I had a tilt table test today and the administering doctor told me I definitely didn't have POTS, but did have vasovagal syncope. I've never fainted at home, but have severe chronic fatigue, and my primary has been concerned I have POTS. I was satisfied with this diagnosis because the doctor who did my TTT said my fatigue should improve with the usual POTS-style lifestyle changes. I've seen some improvement previously with increasing sodium intake and compression garments, but I wasn't doing enough of either of those according to this provider.

However, I got home and checked my record, and my record says I've been diagnosed with POTS specifically. I'm very confused, and the MyChart system won't let me contact the doctor who oversaw the test. I've reached out to my regular cardiologist, but he specifically does not treat dysautonomia, so I don't know how much help he'll be. He's also going to be on vacation for the next few weeks. Oof.

I'm willing to post the TTT notes if anyone is able to help me understand them. I'm not asking to be diagnosed, but I need to be able to communicate to my other providers what I'm actually experiencing, and I don't know if I need to find another cardiologist (although my local POTS specialist has a 2+ year waitlist). I have a premed degree but honestly I am having such a hard time comparing the literature and my procedure notes.

I'm diagnosed with Hashimoto's and have a number of confirmed food allergies (peanut/soy/legumes/walnut/pecan/sesame).

I was incredibly reluctant to trial going gluten free since I tested negative for celiac disease last year, but I did so in April and I have to say, it's helped a lot, but at a price. I'm super sensitive to cross-contamination now, and every accidental exposure I have to gluten seems worse. I seem to have also sensitived to a number of other foods (dairy/oats/corn/rice/potatoes), and have had to stop eating them.

I'm going to get more allergy testing, and am going to talk to my GI about getting retested for celiac. In the meantime, I'm just curious how others react.

For me it's:

Within 30 minutes of eating, I usually first notice my ears ringing and vision changes (light refracts so the room looks smoky). Then I get itchy and break out in a blistery, scaly rash on my forearms, chest, abdomen, and knees. The rash is surprisingly fast growing-- and it's not hives, it's little fluid-filled vesicles. My throat starts to feel tacky and hurts, I get head pressure/a headache, and finally gas/steatorrhea.

Usually the next day the skin on my hands peels off spontaneously (but painlessly), and I feel like I have the flu.

Constipation, the rash, and feeling like I have the flu now last 3-7 days after eating accidental quantities of gluten. The immediate neurological symptoms resolve the day of.

I realized I was reacting to Kind bars, despite avoiding the ones with oats in them. I assume there is just too much cross-contamination with oats in production (I think I react to avenin because certified gluten-free oat milk makes me feel glutened).

I switched to Aloha bars, and yup, I think I'm reacting to these too. Only 2/18 of their flavours of bars have oats-- I missed this initially.

I just feel ridiculous because oats aren't on the ingredient decks of these products, so I'm making assumptions.

I probably need to just cut out processed bars altogether, but I'm sad because I've been really struggling with other health conditions and can't cook currently. I'm super limited in protein sources.

If y'all have any anecdotes of reacting to things where you ostensibly shouldn't, please share. I feel a bit like a hypochondriac despite visible symptoms (rash).

32F. I've been on cabergoline for a week and feel SO much better. Most of my improved symptoms seem to be reversal of unwanted masculinization (thick/red/oily skin, deeper voice, hirsutism). Of course my endocrinologist told me these symptoms were unrelated to my hyperprolactinemia, and only reluctantly prescribed me cabergoline (I don't have a prolactinoma-- my prolactin levels are probably due to Hashimoto's, but my PRL levels haven't budged at all with thyroid HRT). I've been reading research, and I feel decently confident to say that my endocrinologist is wrong (i.e. that prolactin does have a trophic effect on androgen production), but it's been hard to get info on how hyperprolactinemia presents in 1) women and 2) women who don't have PCOS/PMOS.

Please share if you're a woman, whether high androgens or unwanted masculinization is something you've struggled with, and whether either of those improved with treating your hyperprolactinemia/prolactinoma.

I don't have a prolactinoma, but have had persistent hyperprolactinemia for the past year. I'm starting cabergoline today, but my endocrinologist seemed like he was giving me the prescription to shut me up. I've been increasingly fatigued over the past year, to the point of basically being bedridden and I'm now on disability. My weight won't stop creeping upwards despite not eating much due to nausea and being on tirzepatide. I have mild hirsuitism too but PMOS has been ruled out.

I guess my question is, has anyone here been treated for their hypothyroidism-related hyperprolactinemia and felt better? I feel like I keep chasing the next diagnosis/treatment and I'm running out of hope.

Other notes: I'm on Levoxyl+compounded T3, but my TSH is hovering between 2 and 3. My PCP wants to get that closer to 1, but the endocrinologist told me I shouldn't be as fatigued as I am with my current TSH. He also told me high prolactin doesn't cause fatigue...

My PCP doesn't think I have ME/CFS based on my fatigue pattern, and I'm extremely COVID cautious. I'm scheduled to be tested for POTS, but I don't really feel like that explains everything either.

I've had vitamin D and iron deficiencies that were corrected.

Edit to add:

Vitamin B12 and folate are good too. Autoimmune gastritis has been ruled out.

I've had a confusing time ruling out celiac disease (weak positive bloodwork as I understood it, negative biopsy but only one sample of my duodenum was taken which is... not what the guidelines say to do). I've definitely felt better cutting out gluten and now oats, but it hasn't been a silver bullet.