Hormones ran a riot

neroli · Post by **neroli** » Thu Jan 02, 2003 1:43 pm

Finally the doctor has comfirmed my fears that I am indeed having to trash my treatment due to run away hormone levels!! So okay they read 12,000!! They should be 4 to 5,000, so whats double I say!! I think the patient that had stressed out ovaries 5 years ago might have sued him and that's why he is being super sensitive! So now I am told I can't fly anywhere, can't do any sports for a couple of weeks and also that I will have to wait at least 3 months for my next try!! 3 MONTHS is an awful long time especially when you have my mother and my mother in law on the phone every minute asking whether it's time yet to get the knitting out!!! Did my doctor spend more time fixing his Christmas and New Year schedule more than paying attention to my file I wonder. This was supposed to be my first try at IVF/ICSI so we are really miffed at being knocked out before we can even start!! Very miffed Neroli

SueL · Post by **SueL** » Thu Jan 02, 2003 8:27 pm

Dear Neroli I'm sorry to hear that your treatment has been postponed due to your oestregon level being high. I faced that in April/May of 2002 when my levels went to 17,000 (yep thats no typo error!!) on day 11 of stims (I was on 150iu of gonal f). They reduced my stims to half and then to nothing for a few days (coasted) in order to lower my levels. They managed to achieve this by monitoring me daily and it went down to 5000 which they deemed OK to do EC and ET with. Unfortunately I ended up in hospital with OHSS and my stomach was rather on the bloated side!!! I ended up with a chemical pregnancy.... Anyway, it took awhile for my ovaries to go down but they did and I cycled again with a frozen cycle in July 2002. I'm really sorry that they postponed your treatment. Yes they are being ultra cautious and I know you just want to be pg (like all of us dream of) but your doc is thinking of you. Given the choice again, bizarely I would go for it!!! In October 2002 they reduced my gonal f down to 75iu a day and I still ended up being coasted as my levels went to 14,000 (thankfully this time no OHSS)! 3 months is a hell of a long time to wait, just out of interest can you get a second opinion? Good luck Love Sue xxxx [Edited by SueL on 02-Jan-03 20:28]

laura · Post by **laura** » Thu Jan 02, 2003 10:41 pm

How frustrating for you Neroli, It is so horrible having treatment abandoned and being told you have to wait. I hope you feel better soon though - I had mild OHSS on my last cycle and it was abandoned after EC. I felt pretty grotty. Take good care of yourself and I hope the next few months pass quickly. Love Laura

neroli · Post by **neroli** » Fri Jan 03, 2003 1:27 am

Thanks girls for your reply, I think it may be a little impossible to get a second opinion over here as to be completely frank, the fertility thing is just a business and I know in my heart that my doctor is looking out (for me not suing him) my health!! Hence the ultra sensitivity. I really do feel however that he really didn't study my file as he should have done and maybe that was my fault for chosing Christmas as the start. It's obvious now that the poor guy needed a holiday. I was on 225 Gonal-F from day4 until day 12 then he put me on 75 for day 13 and 14 in the hope that my hormones would go down. The reason I am pissed is because when I had my first blood test to check my hormone levels he told me on the phone they were normal when in fact as he told me in person on the Monday (Sunday is holiday) that the level was actually on the high side of normal. I cannot understand for one minute why he didn't decrease my dosage!! I realize now that I have to double check everything he does next time and question him about every tiny detail. Is this what happens with you guys?? 225mm of Gonal-F is really high so when I asked him why he put me on such a high dosage, he claimed that if I was 30 years old, I would be put on 150mm while as a person of 35 upwards is put on 225mm. I am 33yrs old, so why put me on a 35 yr old's dosage plan???? He told me, I asked him, he claimed, I got really fed up.... As I said, we are depressed about the waiting game, no flying and playing our tennis everyweeked. My mum tells me I've been too keen, too keen!! I say to her, HER that calls me all the time asking how's it going and how next door has just become a grandmother, hint hint push push!! Best Wishes from invalid that can't even have a foot massage! Neroli

laura · Post by **laura** » Fri Jan 03, 2003 4:37 pm

I really feel for you Neroli, I have had problems with my hospital at times as well and have had to wait a long time for tx. I had my first ivf in Feb/March last year and am only now starting an FET for my second cycle. It has taken ages to get this far. It is terribly frustrating to have to wait and all of us could be considered too keen, but unless you have experienced the pain and frustration of infertility first hand, you don't understand the extra stress caused by having to continually wait. Is it worth writing a letter of complaint to your clinic? Or is there another Dr in your clinic you could ask to see instead? I can also sympathise with the Mother issue - mine often says exactly the wrong thing to me at exactly the wrong time! Without in any way meaning to. You know where we are if you want to let off steam. How long are you unable to do anything for? Surely not the whole 3 months...? Take care, Love Laura

alison p · Post by **alison p** » Mon Jan 06, 2003 4:09 pm

Dear Neroli, It must have been terribly upsetting to have had your first cycle cancelled. On my first ICSI cycle my eostrogen levels went over 13,000 and my cycle nearly got cancelled. I remember the feeling of total devestation that having come so far, it was all going to be taken away. However, my clinic decided to coast me and luckily my E2 levels went down and I finished the cycle - however, it didn't work. My 2nd cycle I used Cetrotide, which decreases the risk of OHSS. I haven't heard of many people having this treatment (you don't need to down-regulate, instead you just take FSH until there are some follicles at >14mm, then you take Cetrotide. This decreases your E2 levels and the cycle is much shorter). However, I'm not sure that it is for everyone. I'm not defending your clinic, but I think it's very difficult them to work out how much FSH to give patients the first time - it's all a bit hit and miss as each patient responds differently. In addition, patients may respond differently during each cycle. For my 2nd and 3rd cycles I had the same amount of Gonal-F for the same amount of time, but last time only got 6 eggs compared with 13 on my 2nd go. It's not an exact science. Go and talk to your clinic, or if you're not happy with them, move to another one if this is an option. After all, it's your body and you're paying for it. Good luck , Alison P