I need help deciding what to do & my doctors don’t know how to help me!!

Hi everyone, I’m new to this website and would really like some help dealing with my ITP and my doctors. I just turned 21 and I was diagnosed in 2010 after having bled for 28 days straight super heavy which led to me passing out at summer camp. I was taken to the hospital and I was diagnosed with ITP right then and there. Ever since then I’ve been put on different kinds of birth control pills since the vaginal bleeding is really the only problem I’ve had. After a while the pills stopped working so I was put on the depo provera shot which worked for the first 2 years without any issues but now 5 years later I’ve been having a lot of breakthrough bleeding. I bleed every other day vaginally & my platelets fluctuate between 40,000-70,000 without IVIG treatments. I’ve done them a couple times but having my platelets in the high hundreds doesn’t stop or help the vaginal bleeding so my hematologist had me stop getting them unless I was going to have some kind of surgery done. My hematologist says all he can do next is remove my spleen and my gynecologist says she’s out of options too but all she’s done on me is a D&C which showed nothing unusual. I’m just wondering what I can do on the gyno side before going as far as taking out my spleen when vaginal bleeding is my only symptom these days. It’s affecting me physically and mentally because I never know when I’m going to bleed or when I can be intimate with my boyfriend without making a mess out of the sheets. Would removing my spleen really stop the vaginal bleeding? Or should I try some other forms of contraception? Should I try to go onto a regular birth control pill to see if my body is capable of a normal cycle? I don’t know where or who to turn to anymore so any suggestions would be helpful! Thank you in advance

fallenstar97 wrote: Hi everyone, I’m new to this website and would really like some help dealing with my ITP and my doctors. I just turned 21 and I was diagnosed in 2010 after having bled for 28 days straight super heavy which led to me passing out at summer camp. I was taken to the hospital and I was diagnosed with ITP right then and there. Ever since then I’ve been put on different kinds of birth control pills since the vaginal bleeding is really the only problem I’ve had. After a while the pills stopped working so I was put on the depo provera shot which worked for the first 2 years without any issues but now 5 years later I’ve been having a lot of breakthrough bleeding. I bleed every other day vaginally & my platelets fluctuate between 40,000-70,000 without IVIG treatments. I’ve done them a couple times but having my platelets in the high hundreds doesn’t stop or help the vaginal bleeding so my hematologist had me stop getting them unless I was going to have some kind of surgery done. My hematologist says all he can do next is remove my spleen and my gynecologist says she’s out of options too but all she’s done on me is a D&C which showed nothing unusual. I’m just wondering what I can do on the gyno side before going as far as taking out my spleen when vaginal bleeding is my only symptom these days. It’s affecting me physically and mentally because I never know when I’m going to bleed or when I can be intimate with my boyfriend without making a mess out of the sheets. Would removing my spleen really stop the vaginal bleeding? Or should I try some other forms of contraception? Should I try to go onto a regular birth control pill to see if my body is capable of a normal cycle? I don’t know where or who to turn to anymore so any suggestions would be helpful! Thank you in advance

Welcome to the wonderful world of horrible monthly cycles and ITP. I feel your pain. I have had ITP since I was a child and I am now 42, so I have lots of experience in dealing with periods (and runaway periods!) and ITP. I was given a splenectomy when I was around 9 years old because we didn't have lots of treatment options back then (Pretty much IVIg, Prednisone, or Splenectomy). Don't let them imply that splenectomy is a magic cure for ITP, because it certainly doesn't work for plenty of people. I certainly wish that I could go back in time and retrieve my organ, but that's not an option :lol: My primary issue with my ITP when I have low counts is problems with vaginal bleeding, so the splenectomy definitely didn't help me with that at all, and just added new problems.

Nowadays, most good hematologists don't consider a splenectomy until way down the line, after trying lots of other things. Some hematologists don't even recommend them at all because there are higher risks of clotting problems and sepsis that result from the surgery. Honestly, a hematologist who pushes splenectomies is a big red flag for me that it's time to find a new hematologist!

Regarding the monthly bleeding, I have never taken hormonal birth control, and am very glad to have avoided it. Anything with estrogen is a bad idea in combination with the ITP (from what I understand), and when the heavy menstrual bleeding is a result of low platelet counts, just managing the hormones isn't going to address the underlying cause of the excessive bleeding. I'd be interested in hearing about what treatments you have used to treat your ITP. Have your cycles always been so irregular? If they weren't always irregular, when did they start behaving the way they do now? It sounds odd that you can have counts above 100 (which is the normal range for platelets), but still have excessive blood loss. That sounds to me like something beyond the ITP, either some other blood condition or a gynecological issue. I only get excessive blood loss when my platelet counts are below about 40k, and I have primarily treated my ITP throughout my life to keep my periods in check, and not the other way around. If your gynecologist doesn't have any good answers, maybe you can get a second opinion from another one? Counts in the range of 40k - 70k are usually quite safe and don't require any treatment for the ITP. Has your hematologist considered any other clotting disorders that might explain why you have bleeding problems despite having enough platelets?

Recently, my hematologist has started me on Lysteda (Tranexamic Acid) to help manage my periods and blood loss in addition to my ITP treatment of Promacta. This actually seems to be helping a lot and lets me avoid some of the horrible large clots and excessive bleeding that I would get without it. I take the medication for 5 days right at the start of my bleeding, and it is helping a lot so far (I've been using it for the last 4-5 monthly cycles). I don't know if this would be something to try in your case, because it sounds like you probably need to solve the mystery of why you bleed so much with higher platelet counts, but you could certainly ask your doctor about it. Getting second opinions on the hematology and gynecology front sounds like a next step forward. Good luck in figuring it all out.

If your counts are in the high hundreds and the bleeding still doesn't stop, it's most likely not ITP related. It's also not normal to have that kind of bleeding with counts in the 40's and up. It's obvious that having normal counts doesn't make the bleeding stop so having a splenectomy would not fix the problem. I'd see another GYN.

Thank you so much for the replies!! In regards to some of your questions, I am not sure which bc pills I was put on since I was so young back then. I was just told to take them so I did & I would have so much break through bleeding that the doc had me start the depo shot. Like I said, it worked for a while but now I’m bleeding every other day & it’s getting old. I haven’t had a regular cycle since I was about 14 since that’s when I was put on the hormones. All I know is that i would bleeding for weeks super heavy & there was probably a day or two where I wouldn’t be bleeding. It got to the point where I lost so much blood that i passed out from it. My blood tests then showed a hemoglobin of 3 & my platelets were about 7,000. I was given blood transfusions & sent off into the world of unknowing doctors every couple weeks. So other than bc pills, the shot, a total of 4 weeks of prednisone ever, the D&C, & IVIG when my doctor thinks I need it is all the treatment I’ve had. My hematologists only concern with treating me with IVIG is that my kidneys will suffer the consequences so he said “let’s take out your spleen & see if that makes a difference!” I said I wasn’t ready to do that because there’s so much more I could do but I need guidance. It is odd that when my platelets are up that the vaginal bleeding doesn’t stop, I agree. I guess I just have doctors that don’t have the time to really look at my file & anatomy to see what the real issue is. I should also tell you, I have lots of platelets, tons, but mine are immature. My body makes enough platelets but they don’t mature & just die off which gives me a low adult platelet count. Could this be an indication of something else too?? I will ask about the Lysteda by the way since I’ve read about others using it to control bleeding. What’s it like taking Promacta?

How do I go about asking my gynecologist to look further into why I’m still bleeding vaginally even though my platelets are higher? I feel like when I talk to her she doesn’t listen. The last time I saw her she told me that she didn’t want to change anything because I’m “stable” but they don’t understand that I’m not. It’s not normal or safe for me to be bleeding so much. I have an appointment to see her in 3 weeks because I NEED to try something new. And if that doesn’t work then I will be looking for someone new to see me & my medical file.

I'd find someone else now. Has anyone tested your thyroid? My daughter had heavy bleeding when she was a young teen and was also put on BC by a GYN. We found out years later that it was her thyroid causing the problem and BC was not the answer. She didn't take it for very long because the side effects were too much for her. She was depressed and crying all the time. A good GYN should know to test the thyroid, among other things.

BC can actually cause breakthrough bleeding, so it's not always the best solution. Neither of your doctors are listening to you. Have they looked for fibroids or endometriosis or anything like that?

If you found out the info about your young platelets dying off from a BMB, the information is probably incorrect. Most doctors assume that is the problem when they do the BMB, but it's usually not the case. That is old school belief.

fallenstar97 wrote: How do I go about asking my gynecologist to look further into why I’m still bleeding vaginally even though my platelets are higher? I feel like when I talk to her she doesn’t listen. The last time I saw her she told me that she didn’t want to change anything because I’m “stable” but they don’t understand that I’m not. It’s not normal or safe for me to be bleeding so much. I have an appointment to see her in 3 weeks because I NEED to try something new. And if that doesn’t work then I will be looking for someone new to see me & my medical file.

If your gynecologist won't investigate anything, then you definitely need a new one. I'd set up an appointment with a new one ASAP, especially since it can take a few months to get in with a new doctor. Over the years with my medical issues I have learned that there are a LOT of bad doctors out there, and there is absolutely no benefit to sticking exclusively with one. If she has thrown in the towel, she won't do anything more for you.

With my heavy periods, my gynecologist did some testing to make sure that my menorrhagia wasn't related to fibroids or other gynecological concerns. They did an endometrial biopsy to check that everything was fine there (my results came back fine) and they also did an ultrasound (also came back fine). There are several things that they check when you complain of heavy periods to rule out other issues, and hopefully you have had all of that done. If you haven't, again that is an indication that you have a crappy doctor. By checking all of these other potential problems and ruling them out, I know that my heavy periods are only caused by my low platelets, and I can see that because I only have trouble when my counts are low. Your issues definitely sound like something else than platelet related (Except for your previous problem with the platelet count of 7k and losing lots of blood. That is definitely ITP related. One of my runaway periods when I had low counts led to me needing a blood transfusion because I didn't get my platelet count high enough to stop the bleeding before I had lost too much. But all of this other bleeding you have doesn't sound anything like what happened when you had low platelets.)

Regarding all of the hormones, it sounds like you have been irregular and having problems for many years. Anecdotally, I've heard bad things about the depo provera shot causing issues with hormone regulation after the fact that can cause irregular cycles. Since you have LOTS going on with hormones and all kinds of different birth control medications thrown in, and we know that they have lots of effects on bleeding, I would go to an endocrinologist and get your hormone levels all checked out. I recently went to an endocrinologist because I was having some initial thyroid problems, and there is a lot that they can check for you (estrogen levels, testosterone, thyroid panels, etc. etc.). Sandi is right that the thyroid can have huge effects on periods, so if you have problems with any of the thyroid hormones that could result in some of your symptoms. For the last few years my periods have been coming more frequently (23-24 day cycles with 9 days of bleeding is practically half on and half off). It turns out that thyroid problems can affect cycle duration and since I have started taking synthroid (only for the last 2 months or so) I am already seeing a slight improvement and my periods are spacing out a little bit more. You definitely need to check your thyroid and hormones to see what is going on. Figuring things out is really more than half of the battle. Doctors do not know everything, and no one told me to go to the endocrinologist. I followed up because of some symptoms and think that you really have to be proactive with whatever problems you are having and be stubborn until you get labwork and some answers that make sense. Bleeding every other day but having your gyno tell you this is fine is NOT a good way to live. You have to get the right doctors (and new doctors) involved.

I'll reply to your other message about your ITP treatments later, but just quickly, you also need a new hematologist. If your doctor only gave you IVIg when you needed treatment, and only mentioned Prednisone or Splenectomy, then that doctor is living in the 1980s and is VERY unfamiliar with ITP treatments. There are so many new treatments that have come out since only those three options, and there should be no discussion of splenectomy without talking about Promacta, NPlate, Rituxan, etc. ITP has its very own treatment options now!

Keep in mind that some hematologists really don't see many (or any) ITP patients and may only know what it is from whatever random old things they may have learned many years ago. Lots of hematologists focus primarily on oncology or other blood conditions and may really not know much about ITP. I've gone through LOTS of bad hemos in my years, and you really have to shop around until you find one who has a clue about ITP. We've heard horror stories on here of some BAD doctors and how poorly they manage ITP treatment.

Hopefully none of this discussion is discouraging. Trust me, once you figure things out and work out sensible treatment protocols so that you aren't bleeding and anemic all the time, life will really improve. You just have to be a bit tenacious and don't waste time with doctors who give up on you and don't know what they are doing

Hi, so the last time I had my thyroid checked was a couple years ago when I started getting heart palpitations from ehat the doctors called premature ventricular contractions or anxiety but had no correlation to anything else. I know palpitations are a symptom of thyroid issues but they said mine looked fine. My mom has Graves’ disease so her thyroid jumps between hypo & hyper. Maybe it’s a good time to get that checked out... & I can’t stand the breakthrough bleeding anymore, it gives me anxiety & is almost debilitating sometimes. I’ll be sure to have my thyroid checked & I know they’ve tested me for other things but they supposedly y’all cake back negative. I haven’t found much either about immature platelets on the Internet so I’m at a loss. Thanks for the reply!

I’m realizing that my current doctors don’t know how to help me get better or treat my symptoms so in your words, will be shopping around for another. I’ve stuck with my gynecologist because she’s the one who treated me when I was first hospitalized all those years ago. & I had a crappy pediatric hematologist back then too who told me I would never have kids or have a normal life like all my friends /: when I turned 18 I got switched to a new hematologist who I see now but he does have a very old school thought on how to treat ITP. I really don’t want to get my spleen taken out and I really would like to get off of the depo provera shot. I keep reading that there’s only been studies done on women who have taken it for 3 years max. & I’m way past that. The only good thing I can say that I’ve gotten out of my current hematologist is that he said I could always get pregnant & the babies biological make up could cure me haha. It was good news because my last hematologist said I wouldn’t be able to have babies! But anyways, I forgot to add that I also take aygestin to lessen the breakthrough bleeding when it becomes unmanageable.

fallenstar97 wrote: I’m realizing that my current doctors don’t know how to help me get better or treat my symptoms so in your words, will be shopping around for another. I’ve stuck with my gynecologist because she’s the one who treated me when I was first hospitalized all those years ago. & I had a crappy pediatric hematologist back then too who told me I would never have kids or have a normal life like all my friends /: when I turned 18 I got switched to a new hematologist who I see now but he does have a very old school thought on how to treat ITP. I really don’t want to get my spleen taken out and I really would like to get off of the depo provera shot. I keep reading that there’s only been studies done on women who have taken it for 3 years max. & I’m way past that. The only good thing I can say that I’ve gotten out of my current hematologist is that he said I could always get pregnant & the babies biological make up could cure me haha. It was good news because my last hematologist said I wouldn’t be able to have babies! But anyways, I forgot to add that I also take aygestin to lessen the breakthrough bleeding when it becomes unmanageable.

I did a little bit of reading and research on the depo provera shot and I am seeing lots of studies and reports that it causes continuous abnormal uterine bleeding in some patients.

Here is a summary and conclusion of one such study I found on PubMed. DPMA is Depo Provera. I'm no expert at reading all of the medical terminology, but my overall sense is that for some people (and you may be one of them because of the horrible side effects you are describing) Depo Provera causes continuous bleeding because it disrupts some normal processes.

OBJECTIVE:
Progestin-only contraceptives induce abnormal uterine bleeding, accompanied by prothrombin leakage from dilated endometrial microvessels and increased thrombin generation by human endometrial stromal cell (HESC)-expressed tissue factor. Initial studies of the thrombin-treated HESC secretome identified elevated levels of cleaved chondroitin sulfate proteoglycan 4 (CSPG4), impairing pericyte-endothelial interactions. Thus, we investigated direct and CSPG4-mediated effects of thrombin in eliciting abnormal uterine bleeding by disrupting endometrial angiogenesis.
CONCLUSION:
These results suggest that disruption of HEEC tube formation by thrombin induces aberrant angiogenesis and abnormal uterine bleeding in DMPA users.

Hardcore medical lingo aside, you really need to evaluate the depo provera because that is looking like a potential reason for your symptoms. Of course, following up with current thyroid testing (especially with Graves disease in your mother) is a good idea too.

About babies, there is a whole subsection of these PDSA forums that focuses on ITP and pregnancy. I have 3 healthy boys, ages 16, 13, and 11 now that I delivered while having my ITP. Having babies didn't cure the ITP (so when the doctor says having a baby might fix you up, definitely don't believe that!), but it is certainly possible to have pregnancies and healthy babies even though you have ITP.

Okay so now it would really make sense as to why I’m having so much bleeding while on the depo provera. I have wanted to get off of it but my doctor has always said I was “stable” (what a joke) so she didn’t want to mess up anything. I’m so happy that I found this website where I could get some real experience based information from all of you. I’m also glad, putting aside what my hematologist said about kids, is that I can have a family of my own in the future just like you @momto3boys!!

You can get on the right track. You just have to advocate for yourself and find some better doctors. Do what Mom suggests with the Endo and try a new GYN. Unreal that a doctor told you that you couldn't have children because of ITP. SO untrue!

Nearly everyone with ITP has platelets that are destroyed too soon. But most also have production problems and that cannot be detected with a BMB. If you do in fact have 'immature' platelets, then that could indicate a BM problem and would not be true ITP. I'm sure your doctor just worded it wrong. If you did have a problem with your BM you'd have had worse problems by now (like low white or red cells). It doesn't really matter what the problem is....your counts seem to be stable and safe if you're holding in the 40's to 70's.

I’ll make a phone call to my primary care doctor to get a referral to see an endocrinologist tomorrow. I’ve never seen one myself so maybe it would give me more information as to what is going on. I have one last thing to add tonight too: since I just turned 21, obviously being able to drink alcohol legally has been a new thing for me. Is it normal that I start bleeding vaginally too the next day after drinking? Random coincidence? What has everyone else’s experience been with ITP & alcohol? Yay or nay?

I've been a renal nurse for the last 16 years and have never cared for anyone who had renal failure from IVIg.
It can happen but is extremely rare. If it does happen it usually resolves within a few days of stopping infusions. It can cause permanent damage but generally in people over 60 who already had some degree of renal insufficiency.

Sandi is right you must be your own advocate. I suggest you ask your primary care doctor for a renal function test, I bet it comes back normal.
While you're on with it get a coagulation screen, you may be deficient in one of the clotting factors, and a liver function test. Many of the clotting factors are produced by the liver.

I was banned from alcohol for the first 3 months of my ITP diagnosis and it didn't make scrap of difference to my platelet count. It is known to cause clotting disorders in heavy drinkers who have liver disease but at 21 I don't think that'll apply to you.

Keep your Spleen

fallenstar97 wrote: I’ll make a phone call to my primary care doctor to get a referral to see an endocrinologist tomorrow. I’ve never seen one myself so maybe it would give me more information as to what is going on. I have one last thing to add tonight too: since I just turned 21, obviously being able to drink alcohol legally has been a new thing for me. Is it normal that I start bleeding vaginally too the next day after drinking? Random coincidence? What has everyone else’s experience been with ITP & alcohol? Yay or nay?

Great about the referral! Taking charge of things and being proactive always makes me feel better, so hopefully you can figure some things out with new doctors. Educating yourself about your health is empowering. Keep it up!

I'm no help on your drinking question because I have never consumed alcohol (religious reasons) and can't comment on its effects.