potsyturvy Posted August 16, 2011 Report Share Posted August 16, 2011 I'm so glad you all are here!! It helps so much to have people who have experienced similar things to what I experience. You all are awesome! It's great to have people who can tell me to calm down when a symptom isn't a big deal or to tell me if I should get something checked out.I guess that's what I'm looking for tonight. A few days ago I had to do a tb-skin test and a blood test so I can volunteer at the hospital. I bled a lot from both of those.. way more than normal! I've noticed over the last couple days that I'm getting minor bloody noses ( I almost never get a bloody nose). Tonight, I was cleaning my ears and they bled from me cleaning them! I've never had that happen before. My gums bleed when I brush my teeth. And this is a little embarassing, but I've been having some rectal bleeding. It's obvious it's not internal bleeding, it's just pink blood when I wipe. I also am covered in bruises. I am supposed to go to a geneticst tomorrow. I really don't want to talk about bleeding issues with him, but it is kind of freaking me out. I could make an appointment with my gp, but he pretty much thinks everything is all in my head and I just need counseling So I'm not sure what to do. I was also wondering if it could be one of my meds.Here's my list of meds:Florinef .1 mg daily (have been taking it for a year now and never had a problem before, except at times when I tried to increase it)Zebeta (Bisoprolol) 2.5 mg daily (ditto to what I said about Florinef)Celexa 20 mg daily (have been on that dosage for a few months)50,000 IU's of vitamin d 3x a week (started it a little over 2 months ago)Prilosec (have taken it FOREVER!! or at least for a couple of years)I don't know if any of these could be causing the bleeding problems or not, or if the bleeding problems are even anything worth worrying about. I appreciate you guys' help so much!!! Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted August 16, 2011 Report Share Posted August 16, 2011 That's something that I would definately mention. I'm not so sure what it's from, meds or otherwise, but definately mention it, to whoever you feel comfortable with. Sounds like you need a new GP. I know it's such a pain to get a new one (it's always a gamble trying a new doc) but I hope you are able to find one that takes you seriously and validates your concerns. Quote Link to comment Share on other sites More sharing options...
jennyg97 Posted August 16, 2011 Report Share Posted August 16, 2011 Call your doctor. I know that's the last thing you want to do, but if you've got that much spontaneous bleeding going on, you definitely need to get checked out. It could be a side effect of one of your meds or it could be something else. But either way, you need to get checked out. Your dr. should, at the very least, run a few blood tests to check your platelet levels, red blood cells, clotting factors, PT/INR, etc. In the meantime, it might help to eat more green leafy vegetables (only a temporary possible solution), as they have vitamin k which can help with your clotting. Avoid eating a lot of foods with vitamin E (such as garlic) until you get this worked out. Also avoid over the counter anti-inflammatories such as aspirin, ibuprofen and the like.But ultimately, call the dr. right away.Good luck. Quote Link to comment Share on other sites More sharing options...
starby Posted August 16, 2011 Report Share Posted August 16, 2011 Definitely get this checked out. If your doc won't listen, see someone else. I can't imagine any doc could ignore a problem like this even if s/he dismisses your other difficulties. Bleeding needs to be taken seriously. Good luck. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted August 17, 2011 Author Report Share Posted August 17, 2011 Okay, so I brought this up with the geneticist that I saw today. He didn't say much about it, other than maybe, at some point, I should see a hematologist. I'm scheduled to see my ep-cardio in a week, so I guess I'll try eating more leafy green veggies like you said, Jennyg97, until I can get in to see him. I really want to avoid my primary at the moment because he seems to do more harm than good. I live in a small town so there aren't many family doctors I can go to. I've been to all of them before at one point or another and my current one is the only one who has listened or tried to help at all. I think once he sees some of my test results from the geneticist and once I go to Mayo, he will quit thinking it's all in my head and take me more serious, but I don't know. Thanks so much for your replies!! Quote Link to comment Share on other sites More sharing options...
jennyg97 Posted August 17, 2011 Report Share Posted August 17, 2011 Okay, so I brought this up with the geneticist that I saw today. He didn't say much about it, other than maybe, at some point, I should see a hematologist. I'm scheduled to see my ep-cardio in a week, so I guess I'll try eating more leafy green veggies like you said, Jennyg97, until I can get in to see him. I really want to avoid my primary at the moment because he seems to do more harm than good. I live in a small town so there aren't many family doctors I can go to. I've been to all of them before at one point or another and my current one is the only one who has listened or tried to help at all. I think once he sees some of my test results from the geneticist and once I go to Mayo, he will quit thinking it's all in my head and take me more serious, but I don't know. Thanks so much for your replies!!Did the geneticist at least run any labs? This is really probably something you shouldn't put off too long for a couple of reasons. First, if you are not making enough platelets, this could be a serious issue that could become life threatening quickly. Second, if you are spontaneously bleeding, you are more prone to bleeding complications that can be life threatening. Sometimes the bleeding is internal and you don't notice it immediately. (I'm on coumadin and have had several serious GI bleeds, so I have some experience in this realm. Nonetheless, I'm not a dr. so take what I say with a grain of salt.) Third, you are more prone to injury. If you were to pass out and hit your head, for example, this could potentially become serious more quickly than in other circumstances. While I'm not trying to alarm you, I do want to make sure you understand the possible risks.Good luck! Quote Link to comment Share on other sites More sharing options...
sugartwin Posted August 17, 2011 Report Share Posted August 17, 2011 Your geneticist didn't tell you that EDS makes you bleedy? Here's an abstract about it Bleeding and bruising in patients with Ehlers-Danlos syndrome and other collagen vascular disorders. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted August 17, 2011 Author Report Share Posted August 17, 2011 Well, Jennyg97, you convinced me to make an appointment today I have been having horrible allergies, so I figured I'd kill two birds with one stone and go to my family doctor. He ended up not being available until next week, so I saw someone else. I ended up with a steroid shot yay, and they did a bleeding test which came back normal. I'm thinking you're probably right, Sugartwin, that it is just EDS causing it. I'm still going to bring it up with my ep-cardio next week, but at least this puts my mind more at ease. Quote Link to comment Share on other sites More sharing options...
Jan Posted August 17, 2011 Report Share Posted August 17, 2011 That seems like a lot of Vitamin D, could that be thinning your skin? The upper recommended limit is 4000IU a day. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted August 18, 2011 Author Report Share Posted August 18, 2011 I don't know if hypervitaminosis D can cause thinning of skin or not. I have mentioned that I think it is a really really high dose to some of my doctors before, but none of them seemed concerned. I am supposed to take 50,000 IU's 3x a week for 3 months, then switch to one a week, indefinitely. I'm almost through with the three months of 3x a week. I am a little concerned because my last calcium had gone up from 9.6 to 10.1, but I think it will be fine once I start taking it once a week. Quote Link to comment Share on other sites More sharing options...
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