What is ITP?
ITP stands for Idiopathic thrombocytopenic purpura – you can see why it’s abbreviated! It is a disorder that leads to unusual or excessive bleeding or bruising and is caused by low levels of platelets. ITP is an autoimmune condition because the body attacks and destroys it’s own platelets as if they were an enemy, when they are in fact, quite a useful friend. Idiopathic means unknown and despite all the wonders of the medical world, scientists have absolutely no idea why in some people the body goes into overdrive and targets these perfectly healthy platelets.
ITP is diagnosed with a simple platelet count in a blood test. In a normal adult, a count is 150,000 to 400,000 platelets per microliter. In someone with ITP, the count drops below 100,000 – 150,000 and can go all the way down to near zero at which point emergency treatment would be needed. When doctors are discussing results, they will just use the first three numbers – so if your number was 100,000 they would just tell you your platelet count is 100.
My “normal” is around the 70 – 80 mark, which prior to pregnancy, had never required any treatment whatsoever – just an investigation that ruled out any other serious problems, and then regular monitoring to ensure it wasn’t doing anything crazy.
Women are two to three times more likely to develop ITP, and ITP is also more likely to occur spontaneously during pregnancy, so it’s definitely something to be aware of.
If you have any of the following you should make an appointment with your GP to discuss and they may decide on a blood test.
- Excessive bruising or bruising extremely easy
- Petechiae – pinpoint red spots beneath the skin that look almost like a rash but is, in fact, superficial bleeding into the skin.
- Gums that bleed without a dental concern.
- Heavy menstruation.
- Blood in urine or stool.
I have had heavy menstruation since I was 12; but I’ve also had a long-standing diagnosis of PCOS and Endometriosis, both of which cause this. Otherwise, I had no idea I had ITP until I had a routine blood test that was actually looking for problems with my iron levels, and it found that my platelets were unusually low. I was 25 at this time, and a blood test 6 months previous showed no problems. No one could say exactly why in those 6 months my platelet levels had dropped, and now 10 years later they have still not returned to normal.
Most people with ITP do not need treatment unless the platelet count becomes excessively low. There are medications that can boost the platelet count but this is a temporary solution. A more permanent solution is a splenectomy, but this also has other side effects. Unless ITP is causing a serious problem, treatment is likely to simply be monitoring.
There are some medications that you cannot take at all with ITP, as they lower your platelets even further, leading to higher risks. So if you have ITP, you need to double check every medication with your doctor to be sure. Some of this is a bit contradictory, for example I was told not to take aspirin ever before I was pregnant, but then advised to take it during pregnancy to help with pre-eclampsia (which I got anyway… nothing to do with the ITP though!). This is definitely an area you need to consult your doctors in. Ibuprofen (Advil, Mortin etc) can seriously lower platelets, so even if you’re buying a normal over the counter drug that you’ve taken before your diagnosis, you should now just double check to be sure – but you’ll also likely be given a list of the big no’s when you’re diagnosed.
In an emergency if platelets are extremely low (usually below 20) you can be given intravenous immune globulin (IVIG) or a platelet transfusion.
ITP in Children
In children, ITP is very often temporary and will cure itself with time and monitoring. It can happen following a viral illness, such as the flu or mumps. It’s thought that a serious infection can trigger the immune system into this malfunction that makes it target the platelets incorrectly.
A baby can be born with ITP if the mother has ITP, as the antibodies are transferred through the placenta. If this is the case, it usually clears up in the first few weeks of life as the baby begins to produce its own healthy platelets, but in my research I did talk to another mother whose daughter had been in NICU for 6 weeks despite being born at full term and otherwise healthy, because of low platelet issues. Luckily my son was born with a platelet count that was lower than average, but not so low treatment was required.
ITP in Pregnancy, aka “Pregnancy induced thrombocytopenic”
During pregnancy the body can get some mixed signals and platelet levels can drop. If you have not experienced platelet problems before, it’s no longer idiopathic thrombocytopenic, but pregnancy induced thrombocytopenic and this often returns to normal fairly swiftly after the birth.
This can happen to anyone, with no previous problems with bleeding or bruising. If you, like me, are already diagnosed with long-term ITP as an adult, then the complications can vary from absolutely no change, miraculous improvement, or deterioration. It’s a bit of a pain all around because no one has any way of knowing, so you’re in for a fun ride of lots of blood tests and closer monitoring. For me, not knowing brought a lot of anxiety, so that’s something to be aware of, chat to the midwife to and get help for if you feel it’s starting to get overwhelming.
If you have pre-existing ITP or develop PIT, then some things you’ll need to be aware of are:
- You’ll be marked as high risk and consultant led. You’ll be assigned a hematologist to go over your results.
- This can impact whether or not you are allowed a home or water birth depending on your situation and numbers – generally if diagnosed with ITP you’ll be expected to have a hospital birth as monitoring throughout the labour and after is necessary.
- You will need regular blood tests, most likely every 2-4 weeks depending on your results. Yup, for the whole pregnancy.
- You’ll need an appointment with an anesthesiologist who will go over any risk factors and what your results mean in terms of an epidural, spinal, c-section or general anesthetic. You’ll be given cut off numbers and if your numbers are too low, certain options are no longer available.
- You won’t be able to have internal monitoring of the baby during birth due to risks to them.
- You won’t be able to have a vacuum or forceps delivery due to risk to the baby.
- The baby will need a blood test at birth and may need treatment if they have also inherited ITP – but if they have, this will be temporary, not permanent.
- You have a greater risk of bleeding during the birth, so a higher chance of needing blood transfusion or treatment.
My platelet levels were stable from 70 – 90 throughout the pregnancy and actually went up to 120 the week before birth. However, during labour I had hourly blood tests and my platelets were dropping over 10 per hour. They hit 50 at their lowest – any lower and I would have had to have a GA during my c-section. 3 months after pregnancy they jumped up to 125, but 6 months after they were back down to 60. Expect unexplainable ups and downs.
Because ITP can dramatically change your birth plan, you definitely need to get as much information as possible. One thing I found during my pregnancy was very few other women – even across massive support groups and Facebook – had ITP whilst pregnant. If you have any general questions that I can help you with if you’re diagnosed, don’t hesitate to drop a comment or send a private email. I obviously can’t help you medically, but I can offer support and tell you about my experiences. The few women I did talk to about ITP during pregnancy helped a lot with my anxiety.
I did an absolute ton of research whilst pregnant about feeding with ITP. I received conflicting answers from different resources. I can’t tell you what to do in this situation. I trusted my consultant, and her opinion was that yes, some antibodies could be transferred during breastfeeding, but a healthy child would only drop a few platelets due to this and it should not on the whole impact their health. I subscribed to discussion forums with mums who were on both sides of the fence, and there is an article published by the American Society of Hematologists (unfortunately it is behind a paywall so I can’t provide it for you) that stated breastfeeding with ITP was a risk.
It’s one of those tough issues where there are pros and cons on both sides of the fence. As I trusted my consultant, I went with her recommendation that the benefits of breastfeeding in regards to nutrition and antibodies outweighed the potential risk from antibody transference. In the end, it didn’t matter for me as my breastfeeding journey was cut short by inadequate supply. My best advice in this area is to trust your doctors but do your own independent research too before making a final decision.