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Amy 333 06-22-2007 01:47 AM

Re: Having a bad day
Thank you all for your kind words.
Well ended up calling DH and he left work to stay with me and that helped.

I do not browse much because as you all said it doesn’t really get you anywhere The stuff I read I actually knew however seeing that these things happen and having people actually write these things scared me.
This site is a similar health forum to this however it deals solely with my condition. It was actually suggested to me by my heamo. Every time I ask him questions he tells me to go to this forum and look it up. Great support isn t he!

Acquanegra to answer your question it is not APS that I have but Essential Thrombocytosis. My bone marrow produces excessive amount of platelets thus increasing the chance of cloths. A normal platelet count would be up to 400,000. Mine went up to more than 1 000 000. Any meds taken to control this condition are not safe whilst TTC.I am sorry that you have lupus and you re dealing with APS. Do you have children or are you TTC? Wishing you all the best and thanks once again for your kind and supportive words.

Euro Kelly thank you so much for your support. Your words meant much to me. I am sure you ll be a mommy too. Did af show up yet?

Aimiee thank you for your post I am sure that your courage will pay off this summer. You must be a very strong woman.

Vi….thanks for your support. Remember to forget that 1%. Hope you find some solutions re your ovulation issues.

CBB I like your way of reasoning the 50/50 thing……..i do my best to stay positive but then I get a few days here and there where I ll be so negative. Though I know its just a phase and I won t give up. Wishing you all the best for your new cycle. Praying that you ll be on the other side of the 50% too.

Holly I know you e going through such a tough time yourself so thanks for your input. Really hoping that you ll get good news from the recipient couple.

Christine ….how are you? Haven t heard from you for some time? Well I suppose your reasoning is correct I ll try to keep it into mind too.

Mapia….you constant support to all of us is amazing. Thank you for always trying to make everybody feel better. Time is passing by and soon it will be you who will be fulfilling your dream.

Princess that s a good point I have to get pregnant first…..kind of crossing the bridge before I get to it am I !

Deluka I know that you are going through a tough time yourself so thanks for your post. You are correct it is there story. Something which I noted was that most of the ladies with problems did not know about their condition so were not closely monitored. They were diagnosed only after the problems arose. So that s an advantage for me.
I am so sorry about your BFN……I honestly had tears in my eyes when MApia posted on the IVF thread. You ve been through so much and have always been so supportive. I wish you all the best in whatever decisions you and DH decide to take……though I am sure that somehow or another we will both get there.

Kari thank you for your prayers…….you are in mine too. Can t wait to here some good news from you this Summer. Thank you for your kind and caring words.

Ruby that was so sweet of you. I too consider you to be a friend. Thank you for your constant support. I am sure that your bfp is just around the corner.

Dawn I think I already answered your questions. What type of blood condition do you have? Are you TTC too? Would love to have you around……I am also a regular poster on the blood disorders board.

The silver lining in all this is that after heartache all the ladies in the forum had healthy babies and all the premature babies when on to grow up as healthy kids.

Ok this is a really long post so if you made it up to here thanks once again.
Seems like we re all confused with time zones my exam is today in 4 hrs time so i ve got to catch up.


Nicky2112 06-22-2007 03:49 AM

Re: Having a bad day
Amy, girl! I hadn't seen this thread until now. I hope you're feeling better today. Don't even trust the Internet on most issues. It's such a downer!! (And it is all a jumble of misinformation anyway)

I know some days are tougher than others, and this TTC/IF thing really sucks. But, as Sigmund Freud said: "I am fortunate, for nothing in life came easy to me."

Your little baby is going to be so lucky the day it arrives. Much more so than all the "oops!" out there. Don't give up hope. You're still really young. Remember, the mind controls every single cell in our body. Positive attitude during trying times is a must! :)

A big hug to you!

ETA: How did your test go?

PrincessSweetNS 06-22-2007 09:22 AM

Re: Having a bad day
Hey Amy sweetie, just checking in to see how you're feeling. I hope you're feeling better :) How did your exam go? ***BABY DUST***

TryN2BMommy 06-22-2007 09:46 AM

Re: Having a bad day
Amy, I'm glad to hear DH was able to get off work and spend some time w/ you when you were feeling so down. Sometimes the only thing that can comfort is knowing you have that kind of support from the one you love. It sounds like he loves you an awful lot. :D

Well, I just wanted to check in w/ you and see if you were feeling any better. That test ought to be over by now, and hopefully you will be feeling a little relief w/ that behind you.

Hope to hear from ya soon....


pauline23 06-22-2007 10:18 PM

Re: Having a bad day
Hi Amy

As someone who is studying: only read peer review articles and don't read individual stories. Often the only people that tell their story are the ones that didn't and the ones that did don't. So the negative tends to outweigh the postive. What are you study?? I am studying too. I am studying Podiatry. I gave up my career to go on IVF as I was finding it too hard to do both.

Well, hope your exam went well. I am in exams too but alas find doing this more fun than studying functional anatomy!!!

Keep smiling


joann913 11-26-2007 07:15 PM

Re: Having a bad day (IVF and ET)

I also have Essential Thrombocytosis (I'm now 32) and am currently going through IVF treatment ... again. I did a quick search and found your posts. I figured it might be helpful for both of us to get in touch, since we seem to have the same conditions.

Here's my story: I've had 2 miscarriages (pregnancies were also through IVF), and my husband and I have decided to try again. My hematologist suspected ET for a long time (10 years). My first bone marrow biopsy was extremely difficult and my body went into shock before completion. My platelet count was under a million, so for the past 10 years we've been content to just monitor my counts without the official diagnosis. A year ago I had to undergo a second bone marrow biopsy, and the diagnosis was confirmed. My prior IVF cycles (and miscarriages) happened before the ET diagnosis. Today we met with the IVF doctor and we're starting the process again. Before I start any fertility medications, I need to meet with a high-risk obstetritian and my hemotologist to determine whether I should start any medications for the ET. As I'm sure you know, elevated counts during pregnancy can lead to both miscarriages and other fetal complications (along with the danger to us). My count has been relatively stable over the last few years and usually is under 600,000, so I've never needed treatment for the ET. But pregnancy and ET is a different story altogether. I'm wondering if you've had any success with pregnancy or if you've found any other women with ET who are going through IVF.

By the way, I also have endometriosis and my husband had testicular cancer. So it's sort of like we already have 3 strikes against us, but we're not giving up!!!


Kari15 11-26-2007 07:20 PM

Re: Having a bad day
Hey Joann, I just wanted to let you know that Amy is pregnant! She actually found out she was pregnant just days after starting this thread, so she is due in late Feb. I know she has been very busy at work lately so she might not respond to you immediately, but she def still gets on the board quite often and I'm sure she will be happy to answer any questions that you have about the condition you have in common. Good luck to you!

Amy 333 11-27-2007 03:11 AM

Re: Having a bad day
Kari you have an excellent memory...yes i got my bfp on the 23rd JUne.I will never forget that day.

Wow it felt strange reading through this thread.
Well to begin with i am so sorry for your 2 losses...especially since both you and DH have been through so much and above all had coceived through IVF.

So here s a brief overview of my story hoping it will help you.
I am now 28yrs....was diagnosed with ET at around 23yrs. At 1st my counts just started increasing slowly so i was not treated. At 25yrs i had reached around 1.2 million that s when i started hdyrea and daily aspirin. The timing wasn t right as i got married that year and had hoped i d get preggo before starting the hydrea. Though my counts were to high and i was told i d be going through high risks. So i waited for them to go down...stopped the hydrea and started TTC in July preggo was on aspirin only at that time though m/c at 7 weeks.
I insisted on tests...though was told it s normal to m/c. TTC until March nothing happened so did some tests privatley and found i was hypothyroid...was also told that most probably this was the cause of my m/c. Was treated with the same time took hydrea to get my counts down.When everything was stable stopped hdrea and started ttc again. Got preggers with 2nd attempt. I am now 26/27 weeks along i have been on daily baby aspirin for years which i would reccommend. Also since i found out i was preggers i am on 40mg injection of clexane...a form of heparin. I started out with a count of 850 000 and am now at 380 000. The drs are not sure if this is due to the pregnancy or a side effect of the heparin.
It has not been easy...i didn t have much i live on a tiny island and am the 1st pregnant female with ET here. I went to about 12 ob/gynea who refused to take me under their care until i found 1 who accepted me. Also if i had not insisted on tests i would have never had my thyroid condition diagnosed.
I am in contact with many other females who have gone on to have healthy babies with ET. Treatment varies from country to country. Some opt not to be treated, others are on clexane like me whereas some use the interferon inj. I am not allowed to pass on contact info...there are a few threads on the blood issues which have discussed et...maybe you can do a search there.

Do you take aspirin? I have to admit ...your case puzzles me as 600 000 count is not that high and i don t think it could have caused m/c. Have you ever considered running other tests? At what stage of your cycle are you now? Since i conceived naturally my info re iVF is limited though re that you can rely on the support of some amazing women here.

Please keep in touch....i am here if you need to ask any questions or if i can help you in any way.


courtney448 11-27-2007 02:02 PM

Re: Having a bad day
Hi Amy. I am so sorry you are having a yucky day... I really hope it turns better for you. When you get off tonight try to do something to take your mind off of everything like read a book. I always feel like reading takes me a way for awhile! Good luck darling, I hope you feel peaceful and rested soon. Courtney

Amy 333 12-03-2007 04:37 AM

Re: Having a bad day was so sweet of you to post....but don t worry this thread was started back in June i think when i thought it was another BFN for me whereas in actual fact i was preggers.
At the moment i just feel BLESSED with ever day that goes by uneventfully.

So how are you doing?

Joann....would really love to hear from you again.There are not many of us with Et and i think it s great to stick together.


joann913 12-03-2007 02:53 PM

Re: Having a bad day
Hi Amy,

I'm really happy to hear that you're pregnant and doing well. I guess I misunderstood the prior posts and for whatever reason thought you were going through IVF too.

IVF is a tricky procedure and has a higher than average miscarriage rate on its own (30%). The doctors said my ET could definitely also have been a factor, and there is also a debate in the medical field as to whether endometriosis causes higher miscarriage rates as well. I'm sure the stress of my husband's cancer & treatment didn't help anything either. Whatever the reason, I had 2 miscarriages. The last one was 2 years ago, and we're finally ready to try again.

We went back to the fertility clinic last week to get the process going again. As I mentioned in my last post, the fertility doc is sending me to a high-risk OB and to my hematologist so that we can come up with the best treatment plan. Both appointments are next week, and hopefully they'll have something positive to say. They are also going to run some additional tests on me ... checking my uterus again, etc. The fertility clinic that I'm at is the best in the area. Unfortunately they've only had one other patient with ET in their history, and the outcome was not positive. So I figured I'd start searching the boards to see if I could find another woman with ET who's also going through IVF (actually ICXI, but IVF is more common so I figured I'd start there). So far I haven't found any. I've posted on ET boards before, but didn't find anyone there either. I've chatted with several women with ET who were able to get pregnant naturally, but to be perfectly honest I can't really relate as well to them. Not that I don't appreciate the responses, because I do. And I'm sure if/once I am pregnant it will be great to talk with other pregnant ET women and discuss treatment during pregnancy. But I can't get pregnant naturally. We've tried for 5 years, even before my husband was diagnosed with cancer. It's just not going to happen that way. My only option is ICXI. So for now I'm just looking for someone else with ET who's going through IVF treatment, mainly to discuss taking both fertility injections and ET meds at the same time. I'm trying to find out if there are any side effects, problems, etc. So if you come across anyone, I'd love for you to point them in my direction!! :)

I hope your pregnancy continues to go smoothly and that you have a very happy, healthy baby!! If I am able to get pregnant again, I hope you won't mind if I look you up for advice! :)


Amy 333 12-05-2007 12:11 PM

Re: Having a bad day
Hi Joann

Thank you for posting.......I understand your point. I have to be honest and say that i do not know other females with ET that have gone through iVF however i am sure that if your ET is being controlled it should not be an obstacle for you to get pregnant with IVF.
Wishing you all the very best....if you ever want to chat just let me know . In the mean time if i bump into someone with the same situation i ll let you know.

Take care


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