u/qrowskullz

(crosspost)

Hi! I have VWD type 1. I am not anemic, but I am iron deficient, and it becomes very apparent during my menstrual cycle with symptoms like brain fog, fatigue, etc. But I know that a lot of iron supplements are pretty harsh on the stomach, which I already have some issues with. I actually bought some not long ago, and unfortunately, my stomach reacted quite badly.

I know everyone's bodies are different, but I'm interested in gathering some info on what iron supplements may have worked for the folks here. My PCP is currently out, but a PA suggested Vitron-C. I'm a little hesitant to spend money on more supplements with the thought I may not be able to sustainably take them.

Hi! I have VWD type 1. I am not anemic, but I am iron deficient, and it becomes very apparent during my menstrual cycle with symptoms like brain fog, fatigue, etc. But I know that a lot of iron supplements are pretty harsh on the stomach, which I already have some issues with. I actually bought some not long ago, and unfortunately, my stomach reacted quite badly.

I know everyone's bodies are different, but I'm interested in gathering some info on what iron supplements may have worked for the folks here. My PCP is currently out, but a PA suggested Vitron-C. I'm a little hesitant to spend money on more supplements with the thought I may not be able to sustainably take them.

just a tiny celebration :') i started seriously trying to lose weight last january, and my progress has been much, much slower than i'd like it to be, but i finally hit sub 200lbs. i'm 24 & 5'8" and i'm the lightest i've been since highschool. i'm down from 250lb in january 2025 to consistently around 196-197lb or so, and i'm really happy to notice that some of my clothes are looser, and even if it isn't much, i'm able to size down from my original clothing size (it's possible i might be able to size down more, but i'm admittedly used to being a bigger size, so i never go smaller). it feels big for someone who has always been overweight or obese — all the way from kindergarten to now.

it's because of work, but i've started more consistently getting exercise, and my endurance is a little bit better. i'm not as easily out of breath or achy like i used to be after lighter activity. i've started picking some lower calorie options, even if i definitely still need to work on incorporating more outright nutritious things in my diet. i'm still a long way off of my goal, but i'm a little more than halfway there, and hopefully by this time next year, i will be, or at least much closer.

one of my biggest problems is/was drinking a lot of soda. i was at around 6-8 cans of pepsi zero a day at one point, and my teeth suffered for it, definitely. but i managed to stop drinking it altogether recently — special occasions only for me! 🥳

Hello, I'm 24 and looking to get medicaid as secondary insurance while I can remain on my mom's. For the tax year 2025, she claimed me as a dependent, but doesn't plan to for 2026. Am I able to apply for medicaid right now? I'm located in Pennsylvania.

Hello,

I went to the dentist about one month ago and got brand new xrays. I have a number of cavities that need to be filled, and about a week ago, I got the first round of cavities filled. Ever since, I've had pain on the affected side of my mouth when I chew and in my lower jaw when the teeth that were filled were 2 & 3. The pain is coming from I believe 31 or 30. All of the cavities that were seen on xray are relatively small interdental cavities, ALL on the upper jaw. I've been almost religiously flossing and brushing my teeth 2x a day since my appt 1 month ago. The tooth on my lower jaw is also not being watched for a cavity, so nothing was noted, but it suddenly hurts quite badly when chewing on anything, and I'm really worried it might be another cavity even if there was nothing on xray 4 weeks ago.

I did have to go to the dentist again to get my bite realigned this past Friday, but the pain I was having that made me go back might very well have been this lower tooth. It only started after I got the two fillings. Is it possible that a cavity could've formed to the point of bad pain within a month?

Hello,

I've made a few posts here now, and I wanted some advice from you folks. I did not go to an HTC and went to a hematologist-oncologist in my medical system with previous blood test results.

The appointment went very fast. He more or less told me I have very mild VWD and didn't address my earlier more severe blood test results, didn't discuss my symptoms with me, and more or less just said, "you can't cure it, you don't need treatment, just call if you're going to have surgery. You don't need to see a hematologist" and left. 😅 No warning about NSAIDs or anything of the like. Is this very atypical? What do you suggest I do?

Hello! I'm sorry for making multiple posts. This time, the question is whether or not it's worth bringing something up to my hematologist.

I will be seeing a hematologist-oncologist for the first time on Friday and have a host of bloodwork collected as I'm being screened for VWD. I understand that VWF changes easily, and between my original test (July 24th) and my newest test (July 29th), my VWF:Ag went from 28 to 46%, while my factor VIII went from 36 to 62% (however, I only have a Rco for the second test, which is normal).

My question is that I know menstruation has something to do with VWF levels. During the first test, I was not on my period, and during the second test with higher, more normal VWF & factor VIII levels I was on one of the first few days of my period. One of my symptoms is heavy periods, accompanied by terrible brain fog.

I hear that VWF is lowest during the bleeding phase of the menstrual cycle, but it seems like the severity of bleeding in someone who has low levels of VWF naturally would trigger an acute phase response (? as I hear is one of the reasons for elevation). Have any of you had your levels tested off and on your period and noticed what the changes in factors were, or do any of you know anything about this clinically? Is it worth bringing up to my hematologist? Thank you all :)

TL;DR: new patient, low VWF and FVII on first blood test, more normalized on second go-around while actively menstruating; wondering whether that kind of active bleeding could be the reason and whether or not to mention that to the hematologist?

hello! i (24F) posted a few days ago about blood test results, but i have a question as a curiosity while i wait for my hemo appointment next week.

i was tested for VWF:Ag on the 24th and was at 28%. I was also tested for factor 8 activity, which was 36%. iron levels normal, all other anemia tests and CBC normal.

i was repeat tested yesterday (29th) and my VWF:Ag came back 46%. this time they also tested ferritin which came in at 21. if they ordered factor 8 activity, it has not come back yet or have results for VWF:Rco or multimers, which i think WERE ordered. i also started a birth control pill (progestin only) in the in-between time for these tests. additional important information is that i am type O+. even if my levels are actually 46%, i have a history of heavy periods and began this process because i have been bruising very easily.

i am curious if anyone with diagnosed VWD has seen variation like this in their VWF:Ag level? i know they vary a lot by stress/hormones/etc. so i'm curious what it looks like for people who are actually known to have VWD, especially type 1.

hello,

i didn't know this sub existed until today, but i've never had anyone to talk to about this, and i know for sure some of you can probably relate.

i lost my dad at 21 almost three years ago (i am 24). but when i was 13 or so, he turned back to alcoholism and more or less destroyed the relationships between my immediate family members. my mom and i were in a rough position, my dad and i were almost never talking because i was so angry, my brother (much older) abandoned me and would not help or come near the house because he was so angry that he'd gone back to drinking after so long. i can't say i really blame him too much.

for all of the time that he was drinking up until he was hospitalized for a heart attack (there is a lot of missing context; but he was in quite poor health. he was a drinker and a smoker with various health issues and previous heart attacks) and was forced to become sober during that time and was in the hospital for a month or so because he needed a complicated bypass surgery. he was then diagnosed with kidney cancer from an incidental finding, had his kidney removed, and then was also by chance found to have MDS which later progressed to AML. he denied treatment for the most part.

things with my dad and i were very tense still, but we did have a year and a half or so to try to reconcile a little and we had a few things to bond over: we liked some of the same music and he got me into learning how to play the bass. it was something we finally had in common.

because he was not in treatment anymore, we did not know that his MDS had progressed to AML, and he died very suddenly from sepsis. he went to the hospital at 9pm and died around 6am.

i feel very lost without him and still cry and still scream at the world that it's all so unfair. but it's weird, because it feels like i never really got to have a father-daughter relationship at all either, and it's just so complicated. grief by itself is complex, and adding this in, it's a mess. it gets worse when all of the things that my family members talk about in regard to him are all positive memories from before i was born - before he went back to drinking, and that is not the person that i knew. i was just dealt a shitty card, i guess.

i guess i'm just asking for perspective from people who relate. sympathy, comfort, etc 🥲 thank you for this sub from someone who has no one to talk to about this

hello all, i did not expect to find myself here 😅

i went to the doctor for bruising, as i seem to bruise very easily compared even to my coworkers (we work with dogs, so getting jumped on/scratched is part of the job) and i always have 20+ small bruises on my arms/legs these days. i expected maybe a low iron level or anemia, and i came out with factor VIII activity 36% and vWF antigen 28%. thankfully, my APTT and PT INR are normal.

i got my results back from a PA and was given a referral to the hematology department, who i expect to call within the next few days. she explained to me that these results can indicate von willebrand disease type 1, but not too much else. what should i expect from a hematology appointment? is there typically further testing? what does treatment look like for (presumably/likely) mild von willebrand disease?

hello all, i did not expect to find myself here 😅 (24F, type O)

i went to the doctor for bruising, as i seem to bruise very easily compared even to my coworkers (we work with dogs, so getting jumped on/scratched is part of the job) and i always have 20+ small bruises on my arms/legs these days. i expected maybe a low iron level or anemia, and i came out with factor VIII activity 36% and vWF antigen 28%. thankfully, my APTT and PT INR are normal.

i got my results back from a PA and was given a referral to the hematology department, who i expect to call within the next few days. she explained to me that these results can indicate von willebrand disease type 1, but not too much else. what should i expect from a hematology appointment? is there typically further testing? what does treatment look like for (presumably/likely) mild von willebrand disease?

Hey y'all. This one's more to express frustration more than anything else and I'm sure it's not an uncommon experience 🥲 I've lost nearly 50 lbs and I haven't gone down in clothing sizes AT ALL, even going from 250 to 206. I'm still an 18/XXL in pants and an XL/XXL in shirts, and it's so frustrating. Everyone says to take note of non-scale victories, but it feels like I don't really have much to show for it because it feels like my body hasn't changed at all. People have noticed that I've lost weight, but I haven't, and the lack of tangible change doesn't help. I know everyone has different body compositions, but how long did it take everyone to notice changes in clothing sizes?

hello everyone. my birthday is coming up soon and i'll be turning 24. last may i graduated with my degree in biology and environmental studies, and i haven't been able to land so much as an interview for a job in my field. with the way things are now too, there are hardly any jobs as is, and i'm considering grad school, but massive funding cuts have made it almost impossible to get in.

i suffer from multiple mental health issues and struggle to hold a job as is, but the fact that i can't end up in a career i love or even be volunteering doing something that i love is making me feel so much worse. it makes me feel like i'm wasting my life, i can't do anything right, and everything is over for me because i'm struggling so hard to find something with my degree and i can't move to a new location since i don't have the money to be able to. it feels like i won't ever be able to land a job or go to grad school and i'll just spin out forever and i don't know what to do or how to stop feeling like i'm a disappointment and everything is over when so many of my peers have good jobs or houses and i'm just stuck.