u/heavydutyspoons

Posted this on r/askdocs but posting here too 🥲

I have hEDS (taking Zoloft and yaz birth control) and have started developing allergies to things that I’ve never had an issue with before within the past 2 months. I am frustrated and perplexed why this is happening and why now.

First thing is showering which is what kicked this off. I use warm water, typically take about 20 minutes, and while I’m in the shower I start sneezing nonstop. I probably sneeze 15 times minimum and continue to sneeze and have a runny nose after the shower. I also start to develop a cough but the sneezing/runny nose is much more common. It usually lasts for a few hours or a day - depends on how severe it hits me. I thought it was my shower products at first but even if I don’t use any products and just rinse off, I develop these allergies. No one else in my household that uses this shower has this issue - just me.

The past two weeks, eating what I normally do (no dietary restrictions and not trying anything new), I now experience nausea and diarrhea. I either throw up or ride it out to eliminate the nausea or I spend a hot minute on the toilet and make at least 4 trips back before my body decides to stop. I’m starting to think I might be developing a food allergy now.

Last week I had to get a skin biopsy done on 3 different spots, and was given a bandaid to cover up the site to heal. The bandaid issued is one I am normally issued when I get any sort of shot/vaccine and when I get injured at home. I woke up with giant patches of bandaid-shaped red where the bandaid was and extreme itchiness. I even switched to a different bandaid brand in case that would resolve anything but it didn’t help.

I am so frustrated and have no clue what is going on!! I am tired.

By the time it arrives, there will be no use for the cooling products because it’ll be fall! Wanting this one to come in SO BAD 🥲

I had 3 biopsies today (arm, bikini area, neck) and was told my results would come in next week/week and a half. They scheduled a follow up appointment that’s in 6 weeks but said it will be cancelled if my results come back okay. The doctor never explicitly said if this appointment is to discuss next steps or if it would be for treatment in case results come back with skin cancer.

What are generally the next steps if the biopsy shows skin cancer? What should I expect?

Anxiously waiting but wanting to be prepared for the worst.

I’ve been on tirz since the end of April, started with 2.5, worked my way up to 3.5, and now I’m at 5 (which I’ve only been at for a week).

I went from 168 to 145 but keep fluctuating between 144 and 146 for the last 2 weeks instead of seeing a consistent downward trend like I was seeing since starting. I have been hungrier than usual, my cravings have been increased and the food noise is moderately back. I’m about to start my cycle so maybe that is playing into this issue but I’ve been experiencing this for the last 2 weeks.

Has anyone else experienced this? Does it get better?

I bought the fruity kitchen box and fell in loveeee with the Grape Soda bubble bar. Tonight I paired it with the USAHANA bath bomb and omg. I know the bomb is supposed to smell like orange sherbet but even when I smelled it in store, I smelled more of a grape scent.

I am SO glad I combined the two and highly recommend that if you have both products, to do the same. The bath is a gorgeous sparkly grape color.

I had (have?) the accessibility pass and an AP but my AP expired back in February and I didn’t renew. My husband, a friend, and I are going to the parks next weekend and I just want to make sure that everything is all set before we go.

The accessibility pass still shows as active until December 2026 (one year since I applied and was approved) but I vaguely remember during my phone call with Universal something about it only being valid until my AP expires. We don’t have our tickets in hand for next weekend since it is part of a package we booked through our travel agent, and we won’t be given tickets until we check in/go to will call - not sure if this will have any impact but wanted to note.

Do I need to renew my accessibility pass and have another phone call or am I good to go since the IBCCES website says it’s still active?

This is probably a silly question, sorry in advance! I made a post about having a TSH of 6 a few days ago… I finally had my follow up with my doctor this morning and he said it looks like all signs point to hypothyroidism but he doesn’t want to diagnose or start me on medication until I have my T3 and T4 checked too which is so understandable, I want all ducks to be in a row.

I’m getting my blood drawn again in a month and will meet with my doctor in a month to discuss further.

Now here comes the silly question: Is there anything I can do in the meantime to help lower it/control the symptoms? I am so exhausted all the time and getting out of bed feels like a chore, I just want this month to fly by quickly so I can get some answers.

Hi all! I’m a 26F who just got annual bloodwork done by my PCP, results came back today and I’m meeting with my doctor Friday to discuss. My TSH came back the highest I’ve ever seen: 6.09. My WBC and cholesterol levels are also quite high at the moment (not sure if relevant but want to include). My gyno had me do bloodwork back in December and my TSH then was 3.380 and she also checked for free T4 and that was 1.1, my PCP did not check for that.

I haven’t been diagnosed with hypothyroidism but after trying to google my TSH, I kept getting this sub and have been doing a little bit of research. I have been experiencing extreme fatigue for months now, I could sleep for 13 hours and it still wouldn’t be enough. It weighs sooo heavily on me that I feel like I’m being held down with a brick. I genuinely chalked it up to my hEDS but now things are making a bit more sense now (especially since my flares aren’t this long). I spoke to my mom about it who mentioned my (maternal) grandma has issues with her thyroid as well, so it does seem to be something that could run in the family.

Should I be worried with such a large increase in such a short amount of time? If diagnosed, what are my options for treatment? Is this a lifelong condition? Friday’s follow up feels so far away and I would love to get some insight or even anecdotes about this.

I might sound like a bitch and be alone in this but wanted to gauge this sub’s thoughts.

I’ve probably unfollowed and refollowed the Ehlers Danlos Society’s Instagram about a million times. I follow because I’m interested in the research roundup posts and other important news/info (biobank, summits and conferences, etc…) but I unfollow because of the random selfies and videos from people with EDS. I’m really happy people are comfortable sharing their stories but I feel like that’s all I see on my feed from the Ehlers Danlos Society.

I prefer more clinical/informative posts and I know there is probably an uptick in selfies this month because of EDS and HSD awareness month but arghhhh. I don’t want to limit their posts or unfollow (…again) but it gets to be too much.