Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Infertility & ITP 12 years 9 months ago #609

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Hi Guys :)

I wondered if anyone has any experience or information on infertility and ITP?

Would really value any input, whether its advice or just getting to know someone who is in the same boat as me - having ITP and having difficulty in conceiving naturally. My Gynae/Obs Dr. has never treated anyone with bad ITP and I cant find anything on the subject on the web.

I have had ITP all my life and have been trying to conceive for 6.5 years. Now the Dr. is talking about IVF but says there's a risk that I could die if I experience hyperstimulated ovaries.

Would love to hear from anyone!

Gilly

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #611

  • julia
  • Offline
  • Posts: 170
  • Thank you received: 0
Hi Gilly, We started trying 15yr ago and it never happened. We had all the tests and docs found nothing wrong with either of us. After being given the all clear they gave me tablets to stimulate the ovaries & the consultant said we could try it but didnt expect it to work. It didn't so he put us on the list for ivf & forgot about it, once we got to the top of the list i told the nurse we had adopted a 6yr old and was told we no longer qualify for ivf. I was quite relieved by that time.
3Yrs ago this month i was diagnosed with ITP, I have come to the conclusion my immune system was rejecting Peters sperm as a foreign body and killing them.
I dont know if your consultant would benefit in talking with your heama, what is your count? Im sure you could from an eptopic pregnancy but im not so sure if its just hyper stimulating the ovaries.
Good luck
Julia

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #621

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2369
Gilly:

I've never heard of a known link between ITP and infertility. I have heard of a link between ITP and miscarriages, but that is only when APS Antibodies are also involved.

Good luck to you.

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #688

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Thanks Julia, lovely to hear you have a adopted son. We have looked into adopting but they seem to only want to consider us if we are not currently on any IVF treatment as they say we cant focus properly on both.. we are considering starting IVF soon.

I feel that is a bit annoying because we are both 31 now and if we go through with IVF and it fails.., to then start the adoption process will mean its going to be quite a few years down the line before we have the possibility of having a child.

We had a positive PCT (post coital test) which (I think) indicates that I don't have a problem with antibodies attacking my husbands sperm..

My count this week was 16,000 - it usually ranges between 6-20,000 although sometimes it can go below 6,000.

I wasn't quite sure what your last sentence meant do you think you could explain it to me? "Im sure you could from an eptopic pregnancy but im not so sure if its just hyper stimulating the ovaries."

Thanks so much for replying, and I hope your ITP is under control at the moment :)

Gilly

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #689

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Thank you Sandy.
As far as I know we don't have a problem with antibodies regarding fertility..

Thanks for replying :)

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #696

  • julia
  • Offline
  • Posts: 170
  • Thank you received: 0
Hi Gilly, Sorry about that, You had said the Doc was afraid incase you could die if the ovaries were hyperstimulated. Eptopic can kill anyone when the featus is implanted and grows in the tubes but from what i understand Hyperstimulating the ovaries is extra hormones and chemials making the ovaries make and release more eggs than normal so they can collect them and do the ivf bit.
Good luck in your quest
Julia

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #708

  • Bunnie
  • Offline
  • Posts: 223
  • Thank you received: 19
Have you been tested for thyroid antibodies? You can have the symptoms of hypothyroidism with a normal TSH. Fertility issues are common with thyroid problems and there is a higher chance of having Hashimotos or Graves if you have ITP.

thyroid.about.com/library/weekly/aa050199.htm
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #784

  • kiwiinoz
  • Offline
  • Posts: 10
  • Thank you received: 0
Hi Gilly,

Hope this info helps. Hubby and I had 2 children and decided that was enough for us, so Hubby had a vasectomy. Years later we both came to regret that decision and turned to IVF to conceive our 3rd child.
My ITP was discovered at the beginning of my IVF journey, but after talking to many specialists we were told we could proceed. My counts untreated were between 20 - 60 000. The fertility clinic wanted a count of 100 000 for the egg retrieval, so I did a week on pred to get my counts up. We only got 1 egg and 1 decent sperm off hubby, and I am currently 36 wks pregnant. Miracles do happen.
I think your Dr is overreacting about hyper stimulating, here in Australia every thing is closely monitored, and they adjust your meds accordingly. Do you have PCOS (poly cystic ovarian syndrome)? This means you have trouble ovulating and have more chance of over stimulation. I have it mildly, so they started me on a low dose, too low, thats why we only got 1 egg, luckily for us we only needed 1!
All the best.
Emma

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #918

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Dear Emma

Thats lovely to hear that it worked for you! maybe it'll work for us too :)

They don't think I have Polycystic Ovarian Syndrome but I seem to have problems in ovulating at the normal time, my periods are very irregular.

My husband hasn't got 100% normal sperm but they're not too bad.. The doc said theyre below average. I've seen them under the microscope and they seemed to be swimming very well ;) an amazing thing to see by the way!

We had a feeling the dr. might be over-reacting, although he wasn't saying that we shouldn't go ahead, just wanted to warn us of the risks. Everyone doing IVF has a 1% chance of hyperstimulated overies apparently, its just that he says if I fall into that 1% and have a reaction then I'll probably die.. whereas non-ITP patients would just suffer illness and need to be in hospital for a week or so on fluids etc.

He is trying to arrange an appointment for us to see the Director of the nearest fertility hospital to get a second opinion.

We'll see how it goes...
Thanks for replying, was really nice of you

Gill

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 9 months ago #919

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Thanks so much for that - I haven't been tested but I'll look into it! :)

Gilly

Please Log in or Create an account to join the conversation.

Infertility... ITP... pregnancy 12 years 5 months ago #5205

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Hello again :)

Have just got back from an appointment with an top Infertility specialist who gave us tonnes of information re. this! 1.5 hours of non-stop info.. ;)
In short the essence of what he said was;

He says I do have PCOS (Polycystic Ovary Syndrome)which was a shock, but that shouldn't stop me getting preggers as there are extremely effective medical ways to treat our infertility, which are a bit complicated and so I won't mention them here.

However, what he did say which was a huge shock was that it was an extremely high risk to my life to get pregnant and give birth. He is very worried that they wouldn't be able to control my bleeding in a normal labour and even worse a c-section. Even with platelet transfusions and steriods and everything possible.

He said we should think VERY carefully about whether we want to take this risk!

I'm in a situation where I desperately want a baby (we have been trying for 7 years now..and I am child crazy ;)) but of course from my side of things I feel that I have to think about my husband who could potentially be left with a baby and no wife. The thought of me bleeding to death scares him so much. He has seen me in awful situations with bleeding many times during our 7yr marriage.. poor chap.

My platlets untreated are 11-22,000 and I normally run at a count of 16,000. Have done for 31 years. I have big problems with heavy periods but these have been controlled lately with Tranexamic Acid.

Is there anyone with advice - particularly anyone who has got pregnant or thought about pregnancy with counts in this region...? I do respond to steriods and IVIG, although get horrendous side effects.

I love children - have grown up as the eldest of 16 kids and have always worked with children as a paediatric nurse (until I had to give up due to ITP 3 years ago). I know that I may have to accept that my ITP is too bad to carry a pregnancy and give birth safely, but before we have to make the decision to actively prevent me from getting pregnant, I would love to hear from anyone in the same or similar boat!
I feel like my heart is breaking at the thought of never having our own baby...

Thanks gals :)

Gill

Please Log in or Create an account to join the conversation.

Re:Infertility... ITP... pregnancy 12 years 5 months ago #5224

  • kiwiinoz
  • Offline
  • Posts: 10
  • Thank you received: 0
Hi Gilly,

Sorry to hear you do have PCOS, but at least you know what you are dealing with now. You said your fertility specialist advised against pregnancy because of your ITP, but what did your Hema say?
Can you get your counts to 50 000 when treating? If so, what's the problem? That's come out sounding harsh, sorry, I'm not very good at getting things across via email.
If it was me, I would be talking to my Hema.

My platelets were between 13 - 30 000 for a lot of my pregnancy, the 1st and 2nd trimester were worse for me. Thankfully steroids bought it up for the last trimester, and even more wonderfully I am now in remission with a count 110 000 atm.

I know you are worried about your hubby, in the event something bad (very rare) happens. I went through this too, when while pregnant they discovered I had heart defects. Get 2nd opinions, talk to your Hema and then trust your gut. :P

I am sure there are other women on here who delivered with low counts. Try looking in the archives.
I'm wishing you all the best. Keep us posted.

Emma

Please Log in or Create an account to join the conversation.

Re:Infertility... ITP... pregnancy 12 years 5 months ago #5295

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Just a quick reply to THANK YOU SO MUCH...!
Hope to write more later but just wanted you to know that your reply is a huge comfort to us and I have make an appointment to see my Hema on Thursday this week.

Were your doctors ok with you becoming pregnant with counts between 13-30 then? Did they see it as a big challenge?

Have looked in the archives but not found much..

Thanks so much once again!
Gill

Please Log in or Create an account to join the conversation.

Re:Infertility... ITP... pregnancy 12 years 5 months ago #5297

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Have a look on the old board.. lots there from people in your situation have had babies. discuss.pdsa.org/

You didn't say whether you can get your counts up with treatment, steroids or IVIG are both possibilities during pregnancy.

Please Log in or Create an account to join the conversation.

Re:Infertility... ITP... pregnancy 12 years 5 months ago #5312

  • Bunnie
  • Offline
  • Posts: 223
  • Thank you received: 19
With the other autoimmune things going on, you might ask to be tested for thyroid antibodies. There is definitely a link between thyroid disease and infertility (and heavy flows are a symptom of hypo). You can have a normal TSH and still have the antibodies and the symptoms. thyroid.about.com/od/thyroidbasicsthyroid101/u/symptomsdiagnosis.htm is a good place to review the symptom checklist
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

Please Log in or Create an account to join the conversation.

Re:Infertility... ITP... pregnancy 12 years 5 months ago #5344

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Thanks for that link! I hadn't seen those ones..!

Yeah my counts can go up to the range of 70k with treatment. It's just that steriods make me go nuts (no sleep, very depressed, feel(dare I say it, aggressive!)and other things) and IVIG which I had used for years, started giving me migraines and the last time I took it I got aseptic menigitis..

But reckon it's all worth it to get a baby!!

Thanks again :)

Please Log in or Create an account to join the conversation.

Re:Infertility... ITP... pregnancy 12 years 5 months ago #5345

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Ok, thanks very much for that - very kind of you. I'll look into it :)

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 5 months ago #5358

  • kiwiinoz
  • Offline
  • Posts: 10
  • Thank you received: 0
Gilly,

The high risk Dr I had during my pregnancy, didn't like my counts to be below 30 000, during the 1st two trimesters and then over 50 000 for the end. I was treated with pred and ivig before getting pregnant, I think I posted before I had to do IVF, so things were all controlled and monitored. By 7 weeks I was 45 000, 10 weeks 35 000, 12 wks 25 000. So I started with IVIG, horrid headaches, but better than pred. But alas it only bought my counts up 20 000 and then they would fall even lower within a week. They got to 13000 when I was 17 weeks. I was hospitalized for more IVIG and had a room full of specialists arguing with me about taking pred. Ok, so my nose was peeing blood, and the IVIG was not helping much. Pred soon bought my counts up, and 8 weeks later, I stopped. Counts fell but never got lower than 47 000, took more pred for delivery. The pred sucks, I go a little nuts too, even on low doses, my poor hubby and other children.

I had blood tests and saw Dr's nearly every week of my pregnancy. It was all worth it.

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 5 months ago #5387

  • gilly
  • Offline
  • Posts: 16
  • Thank you received: 0
Thanks everso much, that's extremely helpful! So nice and very useful to have contact with someone who has ITP and also needed IVF.
Im going to see my Hema tomorrow and going to use you as an example hehe.. ;)

See what he says..

Really grateful for your sharing this with me. Can understand that having a baby is worth all of the symptoms and stress!
Good to hear that your ITP is in remission!! Wow, could that be a result of pregnancy? I think I've heard that pregnancy can actually have a good effect on platelets.. or have I got that wrong?

Gill

Please Log in or Create an account to join the conversation.

Re:Infertility & ITP 12 years 5 months ago #5857

  • JMcNally
  • Offline
  • Posts: 44
  • Thank you received: 0
Hi,

New to the site, saw this post & wanted to write a quick reply.
I have had ITP for 15 years, it has been in remission most of the the time, this past year it has been up and down.

We have one child & had no problem getting pregnant with him. My counts were GREAT during my entire pregnancy with no treatments (they remained in the 200's). After our son was born we have had issues w/ getting pregnant. I have been struggling with infertility for 2 1/2 years now. My ITP does not effect this, but you may want to look into elevated NK cells (natural killer cells). They are also part of your auto-immune system & they can have an effect with you getting pregnant. It was one of the first things my doctor looked into when he saw that I had the ITP.

Best of luck to you. Jessica

Please Log in or Create an account to join the conversation.

Re: Infertility & ITP 11 years 8 months ago #13126

  • JMcNally
  • Offline
  • Posts: 44
  • Thank you received: 0
Hi Gilly,

I have had ITP for 16 yrs & I am currently struggling w/ secondary infertility. Our son, who is 5 1/2 was concieved naturally and we have been trying for over two years now. My Dr. does not think the ITP and infertility are related, but my infertility is auto-immune and so is ITP. I have elevated NK (natural killer cells). Elevated NK cells is also an aunto-immune problem.
Before I start my IVF treatments, I go on a low dose of steroids to keep my counts up and I get IVIG treatments as needed. The IVIG treatments also help bring down my NK levels. There are things you can do to get your counts up before starting your IVF.
Good luck to you!

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo