New Mom diagnosed with itp 6 weeks post partum

Hi Folks- my name is Nina, and Im feeling overwhelmed, but your words have helped me feel less alone and I want to become a part of this community. I am 31 years pld, 9 weeks ago I gave birth to a beautiful, healthy baby girl, our first. It was an emergency c section, I did not have itp symptoms at the time. Recovery wad difficult but progressing normally, I started bleeding down there again though after 6 weeks. Routine tests showed platlets in mid 30s. I thus far have not been treated yet, my platlets range from 34-53 so far, getting tested 2 x/week. I also have graves disease, and after the birth my tsh levels plummeted so i am currently trying to get that under control. With my post partum hormones, recovering from traumatic labor, the thyroid imbalance and now this itp dx, Ive been feeling a rollercoaster of emotions. My biggest fear is the itp. I am currently breastfeeding, if my levels drop, I will be put on steroids and lose my ability to feed my girl. Also, being a new parent, I already have insecurities, itp has been a bomb that has made me question my ability to be there for my daughter, to do all the things for her I imagined. I'm an active person, Im so afraid of losing that. I was just wondering, for those of you out there with children, how to you manage? I don't want my daughter to live in fear of my health issues, I want to be a good mother. Also, my levels seem to be holding steady right now in range, I don't know what they will do and its so hard being patient. So many worries. Than you for any and all advice you may have. Sincerely, Nina

Nina:

ITP can turn life upside down for a while, but in time you'll find that it's not as bad as it seems. You will be there for your little girl. Your counts are in a safe range right now, so try not to think about the what if's. Hormones can play a part in autoimmune disorders so there is a chance that this can resolve. As you found out, hormones can affect TSH levels, so all of this might sort itself out soon. ITP is not always life-long and most people do go into remission, with or without treatment.

You can still be active with ITP. I worked and had three kids at the time...most of us just keep going! I thought women could still breastfeed on Prednisone, although I'm not quite sure. Take it one day at a time.

This might interest you:


Antithyroid antibody and thyroid function testing.

Eight percent to 14% of ITP patients followed longitudinally developed clinical hyperthyroidism.27 Others developed antibodies to thyroglobulin and may eventually develop hyper- or hypothyroidism. Mild thrombocytopenia has been reported in patients with hyperthyroidism (reduced platelet survival) and hypothyroidism (possible decreased platelet production), which often resolve with restoration of the euthyroid state. It may also be useful to measure antibodies to thyroglobulin and thyroid-stimulating hormone (TSH) to identify patients at risk for clinical thyroid disease.

www.bloodjournal.org/content/115/2/168.full?sso-checked=true

Symptoms matter more than the actual counts, so try not to focus on the numbers, ok?

Hi Sandi- thank you for the response,this is good information. Also, having 3 kids and working though itp, you sound like a tough person! I have asked my endocrin and hemo about linkages between the thyroid and itp and they haven't really had much info for me. I keep hoping the itp was just related to my hyperthyroidism and pregnancy, but then I get my blood drawn and the levels remain down, so far. I get anxiety before every draw, trying to manage it better but this id's all so new. Terrified of steroids. I keep imagining all of the what if scenarios and I just need to let it go, it's so hard though. My husband and parents are very convinced this is just going to get better on its own and that I'm overreacting- I just feel alone in this and isolated in my experience. I really am a hormonal mess right now though, yearning for stabilization and working through the fear...

Nina, you're not overreacting. It is a scary thing. But your husband and parents may be right about all of this working out. Most of the time, ITP triggered by hormones will not improve until breast-feeding is done and the body is back to normal. That can take months. ITP is not generally fatal, especially if you are being monitored and know what to watch for. I was at 3k and still working.

Steroids are not fun, but there isn't anything to be afraid of. The side effects can be nasty, but you have to try to go into it with a sense of humor. I learned that on my second round. It would be hard after having a baby and it's a shame that this wonderful time is ruined for you. Just hug and kiss that baby...that is what you need to focus on.

People who have one autoimmune disorder are sometimes prone to others. Some of us here have multiple autoimmune disorders. You will learn to manage it just like you do Graves (my daughter also has Graves). There can be a link between thyroid and ITP.

Thyroid disease+

Both an over-functioning thyroid gland and an under-functioning thyroid gland have been associated with thrombocytopenia. Thyroid problems are more prevalent in people diagnosed with ITP than the general population. Sometimes restoring normal thyroid level increases the platelet count. It is important to check for thyroid levels and antithyroid antibodies.

www.ncbi.nlm.nih.gov/pubmed/19932432
www.ncbi.nlm.nih.gov/pubmed/17887931

www.pdsa.org/resources/other-platelet-disorders.html

Thank you, Sandi, you seem very knowledgeable and informed about this, I really appreciate you. An update: when all this started 3 weeks ago, my levels were at 36. I've been measured 2x/week since then and the levels have been 36, 46, 34, 43, 53, 45, 65. My doc said they look like they are improving, although slowly. Now I mentioned before that I have Graves Disease. I want to share my experience with you in part because you have a daughter who has this and this info may help. I was dx 7 years ago at 23 years old. I had a bout of hyperthyroidism that was detected, put on ptu made me very hypothyroid after a month, taken off, normal thyroid function for about a year. This trend continued for a few years, would become hyper about 1x every year, meds would overcorrect and then level out. Except a few years ago when I became hypo and it stayed there. My doc thought my thyroid may have burned itself out on its own. I went into levothyroxine 75mcg and was stable for 2 years, I got pregnant. They increase your levo dose gradually by 30% when you are pregnant. Everything seemed fine during pregnancy, no antibodies detected. At 30 weeks, my endo was so confident things going well she said that I didn't need further labs until 6 weeks after birth. Levels were stable. Well, hindsight 20/20 but I now strongly feel my thyroid shouldve been tested again at 34 and 38 wks, because looking back, I started to get hyperthyroidism symptoms. Very anxious, couldn't sleep, diarrhea... When I finally went labor, I vomitted and had diarrhea 10x in the first hours of going into labor, my contractions did dialate me but they were 4 minutes long (!!!) and never tightened together. I had an epidural and then when the baby began to suffocate due to the long contractions, an emergency c section. The baby was also small but healthy thank goodness, but she was only 6 lbs, in the 10th percentile and earlier measurements at 20 weeks showed her in 90th. I felt so out of control and dismayed by the whole experience. After the birth, I couldn't sleep, really for 2 months, sweating profusely, so anxious, dropped 40 lbs in 6 weeks, actually vomiting from anxiety, and other very severe symptoms. Being a first time Mom, I chaulked this all up to pregnancy and post partum healing. But after getting my tsh results 6 weeks later, or 4 months after my last tsh, I saw I was very hyperthyroid and it all just kinda clicked. I think I was hyper for a while and being overdosed on levo. This is also the time at 6 weeks post partum, that I began to bleed again and test showed my platlets low. My endocrine lowered my thyroid dose at 6 weeks from 112 to 88, but 2 weeks later my symptoms were very severe, and levels still hyper, she took me off of the dose completely and told me to restart at 75mcg 1 week later. Almost immediately after going off medicine, I was able to sleep and symptoms fading. Im afraid to got back on levo at this point and am holding off to get a baseline reading after its flushed out if my system. Interestingly, my platlets seem to be improving correlating with stopping the levo. Sorry for the long story, but if your daughter becomes pregnant one day (assuming she hasn't already), please let her know to watch for hyper signs and don't dismiss it as just normal pregnancy stuff as I did. Also, I was potentially hyper for 4 months, I just cant help but wonder how that relates to my platlets. Both my endocrine and hemo seem to think they aren't related but it just seems too coincidental. Also, the way my platlet levels are behaving, have you seen that before in your experience, they take a step up and a half step back? I'm just still so worried that I'm gonna go in and they will have fallen dramatically, I know Im not out of the woods yet, even if they make a full recovery I will always wonder if and when it will come back, just trying to understand where I am. Thank you, Sandi!

My daughter had her thyroid removed surgically about two years ago. She was on Methimazole for about 7 years hoping for remission but it didn't happen. She also began to get some weird symptoms and thought they might be side effects to the drug, so she wanted to stop the meds. The symptoms didn't go away so we think that maybe she is headed for a connective tissue disorder. No kids yet, but it's on her list. Right now she is working full time and in nursing school, so she is too busy to think about kids. Someday...

She's had about 8 Endos since she was diagnosed. We have not found one yet that really knows what they are doing. They all go by levels and not by how the patient feels. They don't listen to the patient and argue with them. It's frustrating!

Your counts are doing better, so hang in there and be hopeful! This might just be a passing thing for you.

ninachyme I have Graves - why did your doctor say you had Graves?

My 1st endocrinologist got with my hematologist and my hematologist did not want me put on anti-thyroid meds. After Graves was dealt with I'm on Synthroid now - I cannot take the generic, my body doesn't like it.

My present endocrinologist is wonderful - she listens, we both agree on what to do, when I have a blood test no matter what the results are she always asks how I feel (we go by how I say I am feeling). Everyone should have an endo like her!

Hi Melinda, I was dx with graves when I was hyperthyroid and the radio iodine uptake scan showed a positive uptake seen in patients with graves disease. It was 7 years ago, then itp occurred just last month. I agree it's so important to have an endo you can communicate with. May I ask, did your graves or itp come first? Are you able to manage the itp? Thanks for reaching out, I have never met someone with both graves and itp.

ninachyme - that's how mine went too. Blood work from a physical came back hyperT - it was so low it couldn't be read, never would go up - had those tests done, cancelled knee surgery because could have had a thyroid storm since thyroid wasn't under control. This was, oh shoot 2003?, was diagnosed with ITP in the spring of 1989. I was on prednisone for too long, my choice since we moved overseas very shortly after ITP diagnosis and in Hong Kong my hematologist would panic if count went done even a bit so I stayed on pred while there because she scared me My Tokyo hematologist was fantastic, turned out he knew my US hematologist, small world. Tapered very slowly once back home and did fine (lower than norm counts but decent) until a tetanus booster in 2002 knocked my count way down, then had one WinRho IV and have had decent counts since. So graves doesn't seem to make a difference with my ITP. Now I'm going about 67k, next count is April.

I'm not sure if you can email me yet or now - used to be one had to have so many posts before they could send someone an email - but it you want to try please go to my profile and try it.

Thanks Melinda, I just emailed you (I think).lmk if you didn't receive!

Nina,

This sounds exactly like me a year ago! I was diagnosed at 8 weeks postpartum with levels in the 30s after prolonged bleeding and bruising. I have never needed treatment.

I was so scared for quite a long time. I,too, breastfeed. I still am at 15 months! That was my biggest worry, too...not being able to feed my baby. But after talking to her doctor, my doctor, and a board certified lactation consultant, it was determined I would not have to stop nursing if I had to take steroids. So, please know that you can get treatment and still breastfed.

More good news is that my levels have increased as my daughter nurses less. We currently nurse just twice a day, and my counts have been in the 60-70k range. I see my hematologist next week, but I am pretty convinced the hormones played a huge part in my ITP. I'll update after my appointment.

Please feel free to private message me anytime. I was really, really scared for at least six months. I completely understand what you are going through!! And I still get concerned. I am here to talk anytime!!

Hi Taz, I just saw this today, thank you! I just sent you an email!

Hi Sandi, just wanted to update, my platelets currently at 169 with no treatment (!!!) I know nothing is for certain but perhaps this was acute... I hope you are doing well, thank you for reaching out to me right when I was diagnosed, you really made a positive difference in my life.

It's a good sign Nina! I hope you can put this behind you and enjoy life with that baby! Please keep us updated. We love happy stories and don't get to see enough of them.