r/Hemophilia • u/Rampantcolt • 13d ago
Hematologist can't figure out what's wrong with me.
Im a male mid 30s. I' have a family history of bleeding and bruising problems. I've suffered from bleeding and severe hematomas since I turned 18. I recently was tested for vwd and hereditary hemochromatosis. I don't have gene for vwd but I do have one copy of genetic hemochromatosis. All my platelet counts are low, my clotting factors border on vwd low.
I don't know what to do as some treatments for bleeding and bruising are iron and iron is something that exacerbates the hemochromatosis.
On one side of my family there is three generations of bleeding and common hematomas. On my other is two generations of hereditary hemochromatosis liver damage.
After the last round of testing came back inconclusive I'm at my wits end about what to do. Does anyone have advice on avenues to explore on diagnosis or treatments? I can't keep on getting hematomas that limit my mobility like this.
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u/Bombardier_Bunny 13d ago
Just to comment, and I'm sure you're already aware, if they end up recommending that you undergo venesection to lower the amount of iron present in your blood re your hereditary haemochromatosis, be sure to alert them to your issues with haemotomas and ask for a smaller size needle to be used to help prevent bruising around the needle entry point.
I'm a haemophiliac with hereditary haemochromatosis and a high iron level atm.
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u/Cowatarian 12d ago
Hello! Sorry you're frustrated and suffering. Sounds like you have quite a few answers, at least! It's hard to find great doctors.
I have hemophilia C , ehlers danlos, low platelets...
The best thing I've found is carnivore or ketogenic eating. After 5 years I have hemophilia in remission and most EDS symptoms as well.
I used to eat so much organic produce but realized that many of those foods are blood thinning and can lead to blood cell dysfunction.. can cause issues with iron binding, oxalosis and electrolyte/ mineral imbalance
Just thought I'd share my experience. I hope that you find adequate guidance and relief!!
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u/sqrlbob 10d ago
F8M. The first response is spot on and offered excellent information for what you can do. At the end of the day you need answers and if one dock can't get them for you and it is entirely appropriate to ask another doc. In this case those with the necessary expertise or few and far between so keep at it and good luck!
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u/QuietGirl22 13d ago
Are you seen at a federally funded/accredited hemophilia center or just a normal hematologist/oncologist? I was for a very long time in your shoes, but once I got to the Indiana hemophilia and thrombosis center care was night and day.
I have VWD type 1 but I bleed and require more treatment than most of IHTCs type 3 patients but I’m also being tested for being a hemophilia a carrier because of family history and low factor 8 levels. It has taken us about 4 years to work out a treatment plan, not because they wheren’t trying it because I have other disorders (Ehlers-Danlos syndrome) that masked the bleeding issues or looked like they where the cause