The First Trimester of an ITP Pregnancy

ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancy

Feature image from BABYCARLOTA

We are having an ITP baby!  I am currently 15 weeks.

The first trimester was pretty full on and things are only now starting to feel normal again.  It has been an insanely busy, stressful and at the same time slow 3 months.  We have already seen the baby three times on the ultrasounds.

I am still nervous just writing it down.  Everytime we go into the doctors, there is a little hesitation, doctors always cautioned us about the risks, to not get too carried away.  They smile, but they are always clear that this will be a long pregnancy and to not burn up all our energy in the first few weeks.  We will need a long game with this one.

Here’s a run down on what our first trimester with an ITP pregnancy looked like.

APS pregnancy, Hughes Syndrome Pregnancy, ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancyDoctors – We went to the doctor as soon as we found out we might be pregnant, which was 3 weeks.  It was as early as possible.  Our doctor was surprised the home pregnancy test even came back positive. 

Home pregnancy tests are getting more and more accurate, but they are not all the same.  On the back of the test, you can read how accurate they are.  Some of the tests are able to give you a positive three weeks earlier than others.  Don’t believe anyone who tells you they are all the same.  

The very best ‘at home pregnancy test’ is FIRST RESPONSE.  I checked with a couple of other brands, and while three other tests came back negative, First Response was able to show a faint red line.  

Since that first trip to the Doctor, I have been back at least every week if not two or three times per week.  I have already spent a lot of time in the reception rooms at my GP’s practice.   

I have met with my haematologist every two weeks and already seen my obstetrician four times as well as emailing him and speaking on the phone.  There have been a lot of blood tests and a lot of phone calls with the results.  There have been many appointments and lots of waiting in waiting rooms.

Platelets – My platelets have been up and down, (mostly down).  In the first few weeks my platelets were quite high, the highest they have been in a while.  I thought for a second that everything was going to be wonderful and I would have no problems, but it was a trick.  The reason why they were so high is unknown.  The best theory we could come up with that my immune system had dropped because I was pregnant.  

By week 11 my platelets were all the way down at 10. Fuck. Me.  That was a fright!  At the moment, it’s week 15 and my platelets are back up to 55 with a lot of medication to get them there.  I can’t figure out what is the worst evil, having a low count or being on high steroids.  Both make me scared.

Medication – At the moment I am taking Prednisone, Aspirin and CLEXANE.  Each week the doses have been monitored and changed in some way.  When my platelets fell to just 10, prednisone was boosted right up for a short time and is now being tapered back to a low safer level. 

At the moment, I am also taking clexane and aspirin for Antiphospholipid Syndrome also know as HUGHES SYNDROME, which is kind of complicated.  The combination of ITP and APS in pregnancy is something that only very few doctors I have come across really understand.  But to put it very simply, I am on prednisone to increase my platelet count, and clexane and aspirin to prevent clots.

Bleeding – I was warned when I became pregnant there would be a lot more blood in my system.  During pregnancy, there is an increase in blood volume, blood vessels and blood-related activity.  So it’s no surprise that I have noticed a lot more bleeding from my gums, more blood in my nose and a little bleeding down stairs.  Bleeding after sex is also more common.  When I was exhausted I had a nose bleed, which stopped after 10 minutes.

Bruising – I’ve noticed more bruises on my legs and arms.  I am getting darker bruises from blood tests than I used to and I have very large bruises on my stomach from clexane injections.  I have more bruises on my legs that are taking longer than normal to clear up.  I normally bleed in the gums but not so much with the nose bleeds.  I was exhausted when it happened and my platelets were under 30. 

Nausea – From week 7 to week 12, I felt sea sick all the time.  It came over me in waves.  I needed to sit down, on the floor no matter what I was doing.  Driving anywhere, getting into a plane or looking at something moving made me feel sick.  I couldn’t look at my computer screen for very long and went off a lot of the food I normally enjoy.      

When I did vomit I was given a moment reprieve from the swelling and foaming in my belly.  I was worried about vomiting up my medication but unfortunately I did not vomit enough.  Instead, the sick feeling just waved over me all day long without respite.

Headaches – What was worse than the nausea was actually getting headaches.  These headaches were from tension in my body, dehydration and probably stress.  I didn’t realise that I would need to drink SOOO much water.  I normally drink at least 2 litres of water a day, but that just wasn’t enough.  I needed more.  My temperature is now higher than normal and I feel a little sweaty all the time.  

I just keep drinking water, a little cordial, sometimes juice and a few HYDRALITES.  The headaches didn’t last more than a few hours.  Every time I felt one coming, I started drinking water.  

Sleeping – During the first trimester, my sleep was broken with at least one trip to the toilet each night, normally around 4 am (or more). Drinking so much water and feeling very dehydrated all the time will do that to a little bladder. 

As well as waking up to go to the toilet, I have been simply waking up before dawn, with my mind racing and terrible sort of dooms day thoughts.  This was particularly bad when I was taking a high dose of prednisone.  I was restless and half asleep all night, thinking, panicking, and wondering if I should wake up my husband.

Anxiety – The Pred effect! Yikes.  As if being pregnant is not cause enough for anxiety, and then you have to throw in PREDNISONE.  There have been a lot of worried late nights about everything that could go wrong.  I’ve been a little obsessed with thinking about bleeding and whether or not there is bleeding in the baby. Very worrying.

When my doctor said that it was a typical ITP Prednisone symptom, everything made sense and I was able to tell myself when I woke in the morning that I was ok (I was just on drugs!).  She said it’s also common in pregnancy to have an over active mind.  

Feelings / Worries – I still feel very nervous to tell people. I’m constantly worried about bleeding and the baby bleeding.  I am trying to hold all the appointments in my head and make sure we do everything perfectly.  It is exhausting.  It feels like there are only a few other people who actually understand what we are going through at the moment. I found another friend who had a high-risk birth and have loved talking to her about the strangeness of it all.  The excitement everyone feels when you tell them, and how at odds that excitement is with your own thoughts.

The Belly – My belly is going in and out at the moment.  It has not quite settled into a little bump shape just yet.  It’s not uncommon for it to be very flat in the morning and get more obvious as the day goes on.  Probably just full of food really.   

Exhaustion – The exhaustion has just started to lift.

On the whole everything is going quite well.  We have wonderful doctors and am getting the very best of care.  Already I am in love with the midwives we have seen.  I am trying really hard to remain positive, but that can be quite tiring.

I’ve stopped eating any form of red foods and beetroot after a late night trip to the toilet left me panicked that the baby had died.  I’m not proud of my panic, as I write it down.  But it did happen, I cried and thought I was bleeding in my bladder and that everything had gone wrong.  It took a few days before the colour cleared up. 

I have been worried the whole time, and I’m sure that won’t go away.  I am trying to take long walks every day and enjoy each day as it comes.  I’m learning as I go.  

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

7 thoughts on “The First Trimester of an ITP Pregnancy

    Bron says:

    Yay Meg a huge conrgats on your pregnancy. I have a wonderful 7 year old boy who was an ITP baby after having had all treatments and splenectomy and a waiting period after Mabthera to get him. Totally get all the fear involved and laughed out loud at your beetroot story because I did the very same thing.I too had prednisone and IVIG during pregnancy and a very hand held 9 months not with out stress. Once that babe is in your arms your focus will be on tiny hands eyes and lips to swoon over. Breath and enjoy this wonderful time of your life..even the itp ride as well. Congrats little people are such a blessing.

    felicia says:

    Congratulations to your pregnancy. I have gone through 3 pregnancies with itp. The last one was the hardest but it was definitely worth all of the hassles of going to my hemotologist ever 2 weeks and getting treatments every time.

    • Meg says:

      Thanks Felicia, Three pregnancies! That is epic, I think you should be writing these articles. I know how you feel about heading to the Haemo every two weeks. We’ve got blood counts every Monday at the moment. I’m sure it will all be worth it and congrats to you too on your ITP Brood!

    jamaica says:

    I am so happy to read this story i had an itp since 2014 until now Im 21years old and i wondering, I also want to have a baby, I wish I am stronger like you. 🙂 thanks you..

    Ashley says:

    I’m happy to read something like this😔. I just found I had itp and it kinda scary for me because my doctor said I’m high risk and their might be some lil problems with my baby😔.

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