Very High FSH

I turn 35 next month. TTC for 3 years. My RE called with my Day 3 FSH blood results and it was 84, E2 was 44. I  did Clomid for 6 months, I have had 6 IUI, one ectopic pregnancy in March, Last month I did injectibles for the first time and my RE suggested to take a month off in between to give my ovaries a rest.  According to my RE he is baffled because I responded well to the injectibles and had 4 follicles, the dominant one was 20mm the day of my HCG trigger.  My RE commented that such a high fsh level could mean I am pre-menopausal! I am so heartbroken.  I am hoping this is just a Lab error....Any similar experiences both good and bad will be greatly appreciated.

[janemelbourne]

I am currently going through the same nightmare...see my post High FSH...Janemelbourne. I conceived naturally in May fairly quickly and then miscarried at 8 weeks. After 3 month s no period my doctor did some tests and my FSh was 60. I was then given Primulot and retested on day 3 ..down to 30...It looks very bad. What is even worst I looked back at past gynalogical results from when I was 26 (I am now just turned 32) and my FSH was high then and my ovarian volume was small. The RE I am seeing said I should have been warned then. I have been put on Birth Control Pill in the 10% chance that it will bring my FSH down enough to do aggressive IVF. 10% chance of pregnancy. I always thought I would have children and I frankly don't know how I am going to get through this....

I don't know what to say to you except there are some success stories of pregnancy with high FSH. I am finding all this very very scary..

[tina1111]

FSH does fluctuate month to month. I have read posts on another site where women take various herbs and have successfully lowered FSH. I'm sorry I don't have more info on what it is they are taking. 84 isn't time to thow in the towel just yet.

[Hope2007]

Jane- Thanks so much for sharing your experience, I am sorry you have to go through this- my nightmare is just starting, I was such a fool to think I might be a month or two pregnant by Thanksgiving meanwhile my ovaries have a poor reserve.  Question for you, what was your FSH at age 26? I had mine done 18 months ago and it was 6.1.  I just find it hard to believe that it shot up to 84.  I have read some success stories too and will keep hoping and praying.  I wish you all the best.

Tina- I appreciate your encouraging words, thank you.

[carina1]

I am also going through the whole high FSH scare.  I will be 35 in November.  I have been through 4 IUI's and 1 failed IVF cycle.  My suggestion is to be as aggressive as possible (i.e, move to IVF as soon as possible).  This was recommended to me by three different doctors.  I had a slow start on the stim. meds. but then produced 13 follicles, 9 being mature and all fertilized.  FSH levels do fluctuate widely; however, as my RE pointed out, one bad number is indicative of a problem.  Which is by no means saying that we have no chance.  There is a forum for women with high FSH and you should read the success stories!!!!  What I would have done differently is to incorporate acupuncture and herbs into my treatment.  I'll be meeting with an acupuncturist next week who specializes in infertility.  I want to have sessions for about two months before my next, and probably final, fresh IVF cycle.  I know what you mean about this just coming out of left field.  I always had regular periods, no pre-menopausal symptoms, and I also thought this time last year that I would be pregnant by Thanksgiving.  The journey has been a difficult one, but somehow with the love and support I've received, I've managed to smile after each unsuccessful treatment.  There is always hope.  We have to stay positive, stay informed, stay aggressive.  This forum has helped me a great deal.  Please let me know if there's anything else I can share with you that would be helpful.

[janemelbourne]

Does anyone else have small ovarian volume? Apparently mine are tiny and this just makes the whole thing even more problematic?

[Hope2007]

I am going to get an ultrasound on Friday which will be day 10 of my cycle just to see if RE can see any changes in my ovaries and if any follicles are even developing. Looking back at my blood work from 18 months ago my prolactin was on the higher side too. The weird thing is I suggested to my RE that I get Day 3 bloodwork, they were quite satisfied with my results from May 2006. Somehow I felt I should get tested again.

Carina1 - I would love to exchange notes with you sometime, I live in the Bay Area and if I remember correctly from your previous posts you are local? I would be glad to email you offline.  Your situation sounds very much like mine.  Can you share how many times you have had day 3 bloodwork and what your FSH was each time?

Janemelbourne - Is there a specific test for ovarian volume i.e inhibin B? or is that correlated with FSH levels? I guess I am still learning the difference between ovarian volume and ovarian reserve.  Are your periods regular? mine are, even after my Lap in March after my ectopic, my period promptly started.

This forum is a blessing.  Its comforting to have a community of caring people.

[janemelbourne]

Hi,
Well I had my ultrasound yesterday and the news just gets worse and worse...they measure .5ml each in volume...like a 60 year old woman. The only good news was they could see a follicle.

In answer to your question Hope, I went off the pill a year ago and had regular periods every 40 days until I got pregnant in March...which was really only our second month of trying. I then miscarried at 8 weeks and didn't get a period. It is looking like I have sudden onset premature ovarian failure which in terms of fertility is one of the worst things....Let me know how your ultrasoung goes..Apparently ovarian volume is more important even than FSH

I am going to start on acupuncture next week..
what about diet? I am going to cut all out alcohol, caffeine, wheat....I have apparently about a 10% chance now. Unbelievable

[carina1]

Hope 2007--  I would be glad to email you-- my email is carina 12 @ msn. com.  I live in New York. I only had two day 3 bloodtests done.  My first last Dec. was 11.6.  The following Feb. it is was 5.  I've asked to have it done again but I guess since the treatment would be the same and they believe the FSH could be higher, they just don't do it.  I asked what my FSH level was during my failed IVF, thinking it might have been really high (since I was on the highest dosage they give at my clinic) and RE said they don't test FSH during the cycle.  It's all very confusing.  Now, you have me wondering about ovarian volume vs. ovarian reserve.  My RE has never mentioned anything about my ovarian volume.  My husband thinks I'm a little crazy for sitting at the computer "trying to figure things out that even the doctors haven't."  This is true and sometimes I just want to go ahead with the treatments and forget about trying to figure out the why's and how's.  I did have genetic testing done that indicated I was in the "gray zone" for fragile X.  This means that I have a genetic mutation-- not enough to cause fragile X syndrome in my own children, but possibly in future generations.  I mention this because there is a link to this genetic mutation among women with premature ovarian failure.  If you have not had genetic testing done, I would recommend doing so.  I hate to throw another curveball, but I thought it was important to mention.  If I were to have children, they would have to have genetic testing when they were ready to have children and may likely have to undergo PGD to ensure the selection of embryos without the mutation.  

janemelbourne-  I'm so sorry that your getting this difficult news.  10% is still 10% and that's EXACTLY what they told my cousin when she was trying to conceive her daughter (she had another fertility issue).  When she asked the doctor, how did I get pregnant, he said, "well, there's that 10% chance I told you about!"  We just never know, and all we can do is TRY, TRY, and TRY again.   I'm glad to hear that you will be starting acupuncture next week-- I will have my first session on Wed.  Let's keep in touch so we can compare the info. we both get.  I have cut out caffeine altogether which was really just a cup of tea in the morning!!  I'm not a drinker, but I would avoid it if I were-- in times like these, you don't want to do anything that will make you second guess yourself later.  I had been a vegetarian for almost 15 years before all of this.  Even though I've done the research and nothing indicates a connection, I just had to start eating chicken and turkey so I could tell myself I tried everything.  THat's been a  very difficult aspect of all this for me.  You mentioned wheat-- what have you read-- I eat a lot of wheat-- YIKES!!!

Take care ladies-- so good to have you guys to connect to!!!

[janemelbourne]

Hi,.
Glad to know there is another internet obsessed woman out there...and my partner says the same thing about letting go. Argh..I am at work and not doing any!

Chinese medicine says that wheat and sugar are hard work on the digestive system...i am just going to cut it out for a while. It is quite easy really as there are lots of ok alternatives in health stores... spelt pasta/ bread which is fine. I don' t want to be able to reprimand myself in anyway,
What about exercise - i do spinning and body pump reg.? I hope it is not too much,..

You are probably about to go to bed whilst it is 11:00am here...

Yeah it is great that you guys are out there as I am increadibly stressed out, actually devestated by the idea I may not have my own child..I am also going to see a counsellor to try and keep stress levels down and I am doing the genetic testing next week.

Somehow hearing everyones story does make me hope just a tad!

[carina1]

Hey, it seems we're on at the same time!  About the only exercise I do these days is walk my dogs three times a day-- which serves as therapy for me!!!  I also ordered a Yoga for Fertility video which I happen to like.  Again, it just makes me feel like I'm doing SOMETHING for something I have no control over.  I've always been such a healthy, active person-- for that reason this all blows my mind even more.  My husband was never so upset about all this as when all the stim. meds arrived--  he just couldn't believe that someone who doesn't even take tylenol for a headache was going to have to take all these meds.  No one could have written a more ironic script-- my husband and I have worked with children and families since we were both 15.  I just hope someday this will all make some kind of sense.  Until then, we just go on taking it one day at a time.  I work with special needs children and that keeps me very grounded as I see what they and their families endure.  If they can smile and live another day, then I better at least try to do the same.  Have a great day!!!!

[Chookdee]

Hi guys. I was a fair long shot to conceive, being my FSH  level 6 mths ago was 11, I didn't ovulate on my own, closed cervix and blocked tubes. The high FSH being the most worrying aspect, but i got my bfp this month, after pretty much having a month's break before my first ivf appt next week. Keep your eyes on the goal, you just never know what's around the corner.
I'm keeping my eye out for you guys and have my fingers crossed for your treatment and success.

[Hope2007]

Janel-  Seeing a  follicle is a positive sign I would think, although the news from your doctor must not be easy, I pray the 10% chance will give you a baby or two or three! I can completely understand your pain.  My mother inlaw asks me about "good news" in every single phone conversation- it reduces me to tears each time.  I read somewhere that low impact excercises are more apt when trying to conceive.

Carina- thanks for your email.  I'll definitely email you sometime. Thanks for sharing info about your FSH and the genetic testing- I'll probably be reading all weekend.

Chookdee - Congrats! I love hearing good news like this! all the very best to you.

So I had my vag ultrasound this morning, RE saw 2 follies(he did not comment on my ovaries)10mm on right side , 14mm on left side, endometrium was 8mm- he has scheduled me for an IUI on Tue after ovidrel shot!  I am so CONFUSED... why am I producing follicles and doing an IUI with an FSH of 86, my RE said one test is not enough to deduce anything. So I will be obsessing all weekend reading up on this.  I am trying to eat healthier, ensuring I am getting folic acid (vitamins) and incorporating exercise into my day.  I am also vegetarian but try to eat fish for its nourishing components.  The only caffeine I have is a cup of tea in the morning- I could cut that out too I suppose.

You are so right Carina, we can keep trying and hoping.  Being able to share experiences with all of you makes the journey easier.  Thank you all.

[marciej]

I am 37 years old and was always getting normal FSH levels until I did the clomid challange. My day 10 blood work said I had a FSH of 16 which was higher then it had been in the past and above what they want to see. Since then it has been normal, but the information my doctor gave me said that one high level test means there is a problem. I also have only one repaired tube so my odds are not looking too good. Has anyone ever had success with so many things going wrong?

[carina1]

marciej-- Have you read Chookdee's posting-- sounds like she had many things stacked up against her as well.  I guess we never know what's possible.  Good luck and keep us posted.

Chookdee-  thanks for keeping in touch with us.  I think about your story often-- it keeps my hopes alive!  I hope you are feeling well and enjoying the new journey your on.

Hope2007-  I think it's good that they are trying an IUI.  I hope it works and you'll get your BFP this month!!!!   I know it's hard and believe me I do it often, but try not to obsess TOO much--  try to relax and prepare your body for what's coming!!!!  I'll be thinking of you this next week!!!

[marciej]

Thank you for your reply, I just recently found this site and I can't stop reading everyones story. After all I have been thru this past year this is where I get little moments of hope. All my other friends keeping telling me for sure it's going to work this time, or as soon as I quit trying it will happen. I just don't have their confidence. I don't think people who don't have problems really get how difficult it is to get pregnant.

[carina1]

Oh, I know exactly what you mean!!!!  I can't count the number of times I've heard people say, "Just don't think about it and it will happen."  I know they just mean well, so it doesn't really get to me.  And, I suppose that would be easier if I didn't have a diagnosed problem.  I do think that sometimes that does work.  My mother tried for 5 years to get pregnant, had 3 miscarriages; when the doctors finally told her, "there's nothing else we can do for you," she got pregnant three months later with my brother and then another 2 years later with me.  Go figure!!!  Please stay connected and reach out to us whenever you need to.  

[janemelbourne]

Dear all,
I hope everyone attempted to have a relaxing weekend...Between the bouts of crying and obsessive internet research it was nice in sunny Sydney...

Did you say you have an FSH of 86 and are still cycling? See my problem is that after my miscarriage my periods have just stopped full stop even though they were ok before...and if they stop it means i am not ovulating..

But is your high FSh the results of drugs you are taking for IUI? Also, sorry for all these questions, but why does your doc recommend IUI vis a vis IVF? I think I will be having to make that choice soon?

Hope I feel for you with your mother in law...Is she the wicked witch of the west or just clueless? I really hope she back offs..that is the last  thing you need..

Carina, you said you would move to straight IVF now rather than IUI? Why? Also have you been diaganosed with high FSH or premature ovarian failure? it seems that you responded well to meds with lots of follicles. I can't believe you have been 3 iui and 1 ivf....it must be hard. Does it get easier mentally?

Sorry for all the questions and just ignore if you don't want to go there.
Gosh i wish we could all meet up for a coffee!

[janemelbourne]

Sorry the first part of questions was for Hope...

[janemelbourne]

I guess that should be I wish we could all go have a cup of tea!

[janemelbourne]

Does BFP mean pregnant? If yes. CONGRATS and may it all go well 4 u!

[Hope2007]

Hi Jane,

I hope you are feeling better.  My FSH was 86.5 and E2 was 44.  Such a high FSH is indicative of pre-menopause or commonly known as premature ovarian failure.  I will be getting bloodwork on day 3 in my next 2 cycles.  I asked my RE if the elevated FSH could be because of the injectibles I took last month but apparently the FSH from the injectibles is no longer detectable 5 days after the last shot. I did have my period last month but I'm very curious about this month especially after the FSH test.   ABout my mom-in-law, she is just clueless I think.  I just wish she would be a bit more sensitive and not ask me each and every time.  It makes me sadder and angrier, yet I know she means well. My new answer to her is "The Doctor has asked me to wait a few months"

I was relieved when RE saw follicles but in my extensive reading I learned that follicles may not necessarily have a viable egg.

Sometime after a miscarriage the body is undergoing a lot of stress both emotionally and physically, stress can also elevate FSH levels according to my obsessive reading.  This ofcourse can also play havoc with your periods.  My RE said one of the patients had FSH of 15, which on paper makes it harder for a pregnancy but she beat all odds and is pregnant.

I asked my Doc about an IVF and they suggested I try 3 cycles of IUI with injectibles before moving onto IVF- but this was all before the results of my FSH, maybe now we will take a different approach if next month's FSH looks equally high.

I know Doctors sometimes prescribe medication to regulate your periods. 32 is still a good age.  Perhaps your body is still traumatized from the miscarriage.  You did fall pregnant in May naturally and fairly quickly as you mentioned- that is a positive sign.

Please don't hesitate to ask any other questions, we are all here for each other and if I can shed some light I will be more than happy to.

Take care and yes it would be lovely to meet for de-caffeinated tea and share our stories :-)

[janemelbourne]

Hi Hope,
Where abouts are  you? I am actually in Sydney not Melbourne (there for work)...

Also my doc said a cup of tea or even 2 is not going to hurt...more to avoid coffee. Do you think decaf is ok?

Yoru RE sounds good....I am amazed at how brave everyone is...you have already had 6 IUIs...I am just beginning on this road.

Yes I did fall pregnant in May...but I have had a previous history of no periods/ very irregular..

Yes my age is a good point but apparently its all about the eggs age...and I have tiny ovaries, and very high FSH..

I understood that when you were very stressed your FSH levels dropped?

I have been put on BCP for a month and then will get my levels retested. Isn;t it absolutly awful the waiting and wondering. Of course all my close girlfriends have young children...

Do you all feel angry this is happening to you? I do. I know there are much worst things but I feel fed up......

[AlexLouise!]

Hi Jane and others,
I too have been given a diagnosis of high FSH.  I am 37, have a 15 month old and had a miscarriage earlier this year.  I didn't know there was anything wrong until I failed to conceive after the miscarriage.  I have only been given my FSH result (10.6, no other results) and was told at my appointment that if I conceived again at all it would all be down to luck (although later the specialist told me that I had a 5% chance of conceiving and a 50% miscarriage rate).  I am now on clomid 50mg and have had one unsuccessful cycle of this.  I have another appointment with the specialist in early October - I know loads more about FSH now (not that I am an expert, but I knew nothing at all when given my blood results) so have a lot more questions to ask.  I wasn't offered other treatment options either, apart from the clomid.  I too have found this whole FSH experience very stressful!

[janemelbourne]

Is it true that miscarriage rates go up to 50%????

Sounds to me an FSH result of 10.6 is not vey high at all?

[janemelbourne]

My RE just called and my chances of conception, with IVF, are now down to about 1%. It gets better and better huh!

[Chookdee]

Hi all, gosh I read through the posts and feel like I'm intruding in on a private conversation!!
Jane, I was an avid coffee drinker up until now, but with all these issues, I think I'll cut back for good, not matter what. I am drinking instant decaf, with a limit of 2 cups a day and will try to get it down to 2. and Yes, I am 5 weeks pregnant tomorrow, very early days yet and I am hoping and praying that it sticks. This is the first time I am preg. We only bed twice last month, as we had pretty much given up due to our IVF appt scheduled for Wed this week.
So sorry to hear your shocking news..Have you conceived on your own at any stage?...You going to give IVF a try?
Alex Louise!!- Hi. My FSH level 6 mths ago was 11 and I am 5 wks preg.. Do I have a 50% chance of miscarrying!?!?!?!?!..Help! I am worried enough already...I hope your doc was wrong!!

[Hope2007]

JaneMelbourne - I am so so sorry about the difficult news your RE gave you yesterday. I think the emotions we all feel are very normal and Medhelp connects us with other individuals all over the world going through the same experiences. Take care of yourself and let me know how you are doing. My email address is ***@**** if you want to email me, I am here for you.

Chookdee - please take care of yourself and try not to worry too much.

AlexLouise - hang in there, perhaps some more bloodwork and tests might help give clearer answers

[janemelbourne]

ohlll god another friend just annouced her pregnancy.

I really can't believe that my chances are as low as 1%.

How to cope.
Hope, Your email address has just come up as stars...Thanks

[Hope2007]

Jane if its any consolation, I am going through a lot of pain, distress and anger myself . Additionally my mom-in-law said to me yesterday that the reason my parents ( who live outside the US) seldom visit here is because I have no babies... ouch!!
Sorry my email address was all starry its actually park 2 royal @ yahoo. com.  

[janemelbourne]

Your mother in law sounds mean! that is a mean comment not clueless!

[AlexLouise!]

Chookdee - congratulations!  What fantastic news and i am sure all well be ok with you.  It is always wonderful to hear of a success-against-the-odds story.

Regarding the 50% miscarriage rate, I think my doctor has a pessimistic view of things so that, if a woman does conceive all is wonderful and everyone is happy; if they don't, he can say 'well, I did warn you'.  He is covered either way.

Jane and Hope - you have probably already seen it, but there is another forum for those with high FSH - www3.fertilethoughts.com.  You might hear some different stories there, although the medhelp forum seems busier and generates more discussion I think.  I haven't really told anyone much about my FSH problem - am waiting to see if the clomid will work first!  I have told a couple of friends but until you are in the position of struggling to conceive i don't think other people can truly understand.  They can try though, and I think I would limit my conversations with my Mother in law if I were you Hope - get your husband to field those calls or get him to say something to his mother about the need for support, tact and empathy!  it is hard enough being in this position without having to cope with that type of comment too.  Anyway that is my rant over.

[Hope2007]

Alex- Louise -  Thanks for sharing the FSH website details.  I'll definitely take a look at that.  I am no expert but I was reading somewhere that FSH levels between 10-13 are not as bad as say 20 or 30.  You might still be within the zone. Let us know how your Clomid cycle works out this month.  Its so true that people who have not gone through the whole infertility journey may not truly feel the emotions we do. Carina1 said earlier in this thread "Stay aggressive, stay informed and stay positive" I completely agree.  

JaneMelbourne- hope you are doing ok?

Take care everyone !

[janemelbourne]

Dear All,
I have been checking out the international premature ovarian failure support society and it is def. worht having a good look at. It has made me understand that my chances over the next 10 years of a natural pregnacy are at 10%, if not a bit higher because of my age. Also because I have a follicle, there is a very small chance (which I haven't discussed with my RE) yet that I have diminished ovarian reserve. Hope it really is quite interesting reading. You need to register to get access to the boards...this is free and it is really informative. Also, everything I have read recommends acupunture..even if it doesn't lower FSH it does help with stress management which is only a good thing...
so Hope if you can (and aren't already) maybe try it...I am walking around with a tiny needle in my ear from my first session..no one has noticed yet! Apparently it helps take the edge of anxiety/stress!

You know I guess the thing if we do get kids we are going to be so gratefull for them/ real miracles.

As it is I do feel lucky as I have a very loving partner...although for his sake I am going to try and stop starting and ending everyday in tears!!

It is really nice to hear how everyone is doing

Hope, I agree with AlexLouise...you really do not need those kind of comments at the moment.
Take care

[janemelbourne]

sorry website is
http://www.pofsupport.org/

[Hope2007]

Thanks for sharing the website. I have heard so much about accupuncture I might try it, my fear of needles has diminished after so many blood tests, injectibles etc

Whenever I feel hopeless I count my blessings and like you I have a very loving supportive husband.  Its so hard to control the tears sometimes. When I first got my FSH results I was walking around with puffy eyes all the time, all the crying made my eyelids swell up, I tried to cover it with a lot of eyeliner and mascara and ended up looking like a racoon!

[janemelbourne]

Hi Hope,
i have just reread your posts and you are still cycling I understand - that is great news..you chances are much higher if you are still cycling. But everything I have read is you need to be aggressive because with these high FSH results its def. diminished ovarian reserve heading towards premature ovarian failure. Once you stop cycling it is ofcourse much harder to get pregnant. Have you got a good RE? I really hope you try acupuncture.

I am just trying right now to be as healthy as possible to maximise my chances.

[janemelbourne]

Hi Hope,
i have just reread your posts and you are still cycling I understand - that is great news..you chances are much higher if you are still cycling. But everything I have read is you need to be aggressive because with these high FSH results its def. diminished ovarian reserve heading towards premature ovarian failure. Once you stop cycling it is ofcourse much harder to get pregnant. Have you got a good RE? I really hope you try acupuncture.

I am just trying right now to be as healthy as possible to maximise my chances.

[RunningL8]

I just read this thread and wanted to say that I guess what is considered a high FSH score is all a matter of perspective.  Last January I was 45 and newly married (neither of us has ever had children).  Initially, my ob-gyn thought this was impossible at my age, but I had a 3rd day FSH test and it came back 10.  My ob-gyn thought this was a surprisingly good score in light of my age and sent me to an RE for advice.  Meanwhile, after only 3 cycles of charting my ovulation, I was pregnant (without fertility treatments).  Unfortunately, at 45 the risk of miscarriage is very high, and I did miscarry at 9 and 1/2 weeks, but I was told that was due to my age, not the FSH score.  Most of you are still relatively young, so you shouldn't give up!  My recent FSH score was 11; again, the RE thinks that is hopeful enough to try ivf, even at my age.  But it would be better if I had a much higher FSH and a lower age, so I think you all should keep trying....    

[janemelbourne]

Hi .
The problem is for me that I have stopped having periods (so no ovulation), and in addition to tiny ovaries have only one follicle! All those things are not great indicators. Still I am hoping the RE is being really negative so I don't get my hopes up...

[carina1]

Hi, everyone!  I've been away from my computer for a few days, so I haven't been in touch.  I hope everyone is doing well.  I just wanted you to know that I started acupuncture last week and the acupuncturist told me about the many women she's worked with that have had high FSH and have since become pregnant-- it gave me some hope.  I feel like I need to give it my all before going on to a fresh cycle-- it would most likely be my last.  I am drinking an herbal tea that she recommended.  She also said I should have wheatgrass-- which is DISGUSTING.  According to her, the more bitter, the more better!!!  Who knows, ladies!!  Like I said, just giving it my all this time around.  I also ordered a yoga for fertility dvd which is really relaxing.  Just wanted to give you guys an update and maybe some info.

jane-- Don't give up.  Please consider some alternative treatments.  Western doctors rarely consider these options, but I've heard of women who have stopped menstruating and after undergoing eastern-type treatments have resumed their periods.  It's worth a shot.

BG-MN-- thanks for your input-- it gives me some hope.  please keep us updated and all the best to you.  

[janemelbourne]

Hi Carina,
Nice to hear from you again!

No I am not going to give up...I also have started acupuncture and the yucky tea! Not the wheatgrass though? Where do you get this and how often do you take? Why is it so important? UGH!

My feeling is that I have only gone 3 months without periods so hopefully they will come back...

Hope how are you doing?

[Hope2007]

BG-MN I am sorry about your miscarriage, thank you for sharing your experience with us, your words of encouragement have really made my day. Please keep us posted- take care and all the best

Jane: Hi ! hope you are doing well and as Carina and BG -MN said please dont give up hope yet.  To answer your question, my RE is pretty good although he is a minimalist when it comes to talking, mostly his nurse does all the explaining and yes I am cycling, I had a period last month but I wonder what this month will be like.  I also had an IUI as my RE recommended because he did see 2 follicles on Day10- I dont want to sound negative but to be honest I am not expecting anything this cycle, I am taking progesterone suppositories but I feel no changes in my body as I did in the previous IUI cycles or maybe I imagined those symptoms because I so desperately wanted the BFP.  I am looking into acupuncture and I did buy a bottle of wheat grass tablets from whole foods.  This month I am also trying to get regular exercise.  I am glad you have started acupuncture - I hope your cycle starts very soon, keep us updated and all the very best.

Carina - Hi there, thanks for sharing the info. I am reading more and more about how good acupuncture is will definitely look into it.  I am just waiting for my period to start so I can get my Day 3 FSH again - I know I should be more proactive but I am eagerly waiting for my period for once! You take care and let us know how the acupuncture and tea work.  All the best!

[janemelbourne]

Hope it is really really good if you are still cycling with an FSH over 80. from what I understand you do need to be very aggressive about this now in case you stop cycling...your chances are much higher now.I don't want to scare you I just wish I knew what I know now when I was still cycling..
My FSH is in my 30s and I have ground to a halt! Hopefully temporarily...

I am also really enjoying the acupuncture. If nothing else I sleep fantastically the night after...you know when you feel like your sleep is actually delicious?! And I have ready really positive stories about success with it on the Premature Ovarian Board. Still all this is def. keeping us broke on top of our mortgage..

Good luck everyone!

[Hope2007]

Thank you for your encouragement, I will definitely be taking a more aggressive approach, you had asked in an earlier post where I live, sorry I never did answer that- I am in San Francisco, California and I know what you mean by all the treatments costing an arm and a leg.  I am considering going overseas to get an IVF done in December, its a fraction of the cost and I'll have more family around me than I do now. Your acupuncture sounds wonderful! I am so glad you are enjoying it and getting some quality sleep.  I pray your halt is temporary and you start cycling again.

[janemelbourne]

I hear San Francisco is beautiful.
IVF in Australia is about $4000 a go... I think the states is a lot more..Where are you looking at going in December? I have heard the states is really expensive...

Hope I was just rereading this post and maybe your high FSH was a once off? Sounds like everything else is ok..you respond to drugs have follicles etc. i really hope so for you. So maybe it was just one isolated result. Seems like your RE has faith. When do you know if you have a positive from the IUI?
Good luck

[carina1]

Hi, Ladies.  Sorry I can't keep up with all the posts.  I'm glad to hear you are both doing well and sounding a bit more positive.  There are definately good and bad days on this journey.  Jane, like Hope said you can pick up wheatgrass at Whole Foods-- or online.  My acupuncturist said the pills aren't as effective as the powder-- I've heard the same about cod liver oil.  Of course, it tastes TERRIBLE, so I may just have to buy the pills, because I'm barely taking the powder.  I'm not sure why it is important-- but like she said, "the more bitter, the more better!"  I've read about it being beneficial on other sites so I can believe it.  I know what you ladies mean about the cost of treatment.  We've had to pay about 6,000 and that's with insurance covering 75%-- we live in NY-- one of the most expensive cities in the world, so I'm not surprised.  Honestly, we wouldn't be able to afford this if ins. didn't cover some.  As it is, we are so tight.  I'll be thinking of you guys!!

[janemelbourne]

Wow Carina, Is that $6,000 for one IVF treatment? Ouch that must hurt. Here is $3,000 and thats Aus...

I have a question for you all and any thoughts comments appreciated. Since my problem seems to be I have stopped ovulating/ producing eggs it seems strange to me that if my FSH does drop my doctor wants to go IVF...getting pregnant once ovulated seems 4 me to be the easy part since I did get pregnant the first month we really tried...Very confusing>
I know what you mean Carina about up and down days...some days I am like I am so going to be the lucky 10%..and then other days it is like yeah right...and what about the other 90% who never conceive...and gosh i do miss coffee a bit my acupuncturist has said even soy decaf is not good........
oh well in the scheme of things it is minimal..
Hope everyone is doing ok.

[baby1234]

Hi ladies. I hope you don't mind me barging in to your conversation. I just wanted to tell you that there is hope. Here goes my story...

At the age of 32, I finally convinced my dh that it was time to stop bcps and try for a baby. That was in Nov. of 04. We tried naturally for a year without success.

In Oct. of 05, at the age of 33, I finally got my GYN to seriously take a look at what was happening with us. Dh had a sperm analysis which showed an elevated white blood cell count. He was off to the urologist for antibiotics for an infection. His SA improved and we moved on to investigating me. First was the pap, general bloodwork, hsg xray, and then a post coital (sp?) test. All checked out. No pregnancies. (and years wasted on birth control I think!)

April 06 was my 34th birthday. GYN referred me to a RE finally. Had my first appointment in July of 06.

RE did an ultrasound and more bloodwork. My ovaries looked good, but I was devastated to find that my fsh was at 13. I felt like I was handed a death sentence as far as ttc was concerned. I immediately started researching on the net about what this meant and was increasingly despondant about what I found out. My RE was optimistic and kept saying that my age trumped the fsh number. I wasn't sure I believed him, but I couldn't stop trying for a baby until I was pregnant. Still I was so afraid I would get the dreaded donor egg speech at any moment. As it was, I was already given the 1% chance of conceiving on my own speech.

I started accupuncture right away on my own. I went two to four times a month starting in July from then on. I did the herbs and nasty drinks that the acupuncturist suggested.

IUI #1 was in July 06-Clomid and injectibles = 3 mature follicles = bfn and a cyst and a month off of ttc (which I knew meant doom because I had "no time" to mess around I thought. I cried the entire month about how hopeless everything seemed)

IUI #2 was in Sept. 06-injectibles (gonal f and trigger) = 4 mature follicles = bfn

IUI #3 was in Oct. 06-injectibles (again gonal f and trigger) = 5 mature follicles = bfn and two cysts another month off and more crying

IVF #1 was in Dec. 06-- fsh still 13--lupron, gonal f, menapur, trigger, medrol = 6 follicles which all fertilized. Transferred 2 embies and froze one blast on day 6 = bfp which m/ced at about 6 weeks

IVF #2 was in February 07=-fsh was 9--gonal f, menapur, trigger, medrol, and one other pill that I can't remember the name of now = 8 follicles of which 7 fertilized. Transferred four embies and had none to freeze = bfp which m/ced at the exact time at the first m/c

The RE felt that the m/cs were just bad luck, I guess that my eggs were old type of thing was what he thought although he never exactly said that. I didn't agree and wanted more testing. Did the recurrent miscarriage bloodwork and found some clotting issues. I learned to be my own advocate when I didn't agree with the doctor...and I was right. Wish I would have done it earlier.

IVF#3 was in April 07--fsh was 8--same meds as IVF #2 with the addition of lovenox (a blood thinner) = 10 follicles of which 8 fertilized. Transferred 6 (yes 6) embies and had none to freeze = bfp twins. I am currently 22.5 weeks. I will be 35 when I deliver.

My point is this. It can happen. It does happen to many of us high fshers.  I suggest that you get as aggressive as your budget allows you to get. Your fsh doesn't tell much more than that your body takes more hormones to produce eggs and you may have fewer eggs to start with. It doesn't reflect the quality of your eggs. Do acupuncture if you can with a qualified acupuncturist. (Interestingly, my acupuncturist kept asking if they checked whether I was anemic or had blood problems...I thought they had checked it. Seems like that the clotting problem, or at least that there was a blood problem, was picked up by her at the very start of my visits with her. Take the acupuncturist's suggestions about what to look into if they have any!) I am not sure if the herbs helped any, but I did them, too. I did nothing to my diet. If your RE is giving you a doom and gloom prognosis, maybe you should find a RE who is fsh friendly. There are many of them out there. Also, ivfconnections.com has a thread devoted specifically to high fsh issues. It might be worth it to check that out, too, even if you aren't doing an ivf persay. They talk about all infertility type issues like iuis and the drugs, etc.

I wish you luck and success in the near future!

[Hope2007]

Baby1234- your experience is so inspiring, thank you for sharing details of your journey with us and CONGRATULATIONS! Did you continue accupuncture & taking herbs during the months you were on meds?

Carina and Jane - Sorry I have not been able to post as often as I'd like to.  So I started AF on Sunday afternoon, I was miserable yet happy and relieved.  I went for Day 3 bloodwork yesterday and I am waiting to hear back from my RE.  Hope you are both well.  Talking about cost of treatments.  My insurance does not cover infertility so an IVF will set me back $12,000 + meds etc, probably a total of $14-15K. Thats why I am looking into Asia or South America.

[carina1]

Baby1234-- Thank you soooooooooooooooooo much for sharing your story-- It's so important that we hear positive news with happy endings.  It so easy to feel hopeless.  I will keep your story close at hand (and heart!!) when I am feeling down.  It is so interesting that you say to listen to your acupuncturist.  I've been to two and they both are more concerned with my TSH level (thyroid) which is close to 3, than they are about my FSH.  So I'm going back to my original endocronologist to have her check again and discuss with her the possibility of meds.

Jane and Hope:  Sorry I can't post as much either, but I do check in on you guys!!!  Hope, have you checked into the shared risk packages offered?  You pay a big amount for up to three IVF cycles and 3 frozen cycles, but if you don't take home a baby you get a large percentage of that back.    

Jane:  I think your RE wants to move to IVF because the meds they give you not only lead you to produce a greater # of eggs, but they also supposedly boost the egg quality-- helping them to mature appropriately.  I'm not sure if that's answering your question.  Let me know if I understood your question.  So glad your doing the acupuncture!!!!

[janemelbourne]

I am finding this so hard to keep positive when RE's keep putting my chances at 5%. I just can't believe I have gone from getting pregnant first real try  5 moths ago to being told my chances are now almost nil unless I do donor egg..and my partner does not want donor egg - i can understand i don't want his brothers baby either!...I have a sister but she is 39 and has inexplained fertility..although all the tests are normal...she has offered but time is running out.

Hope that is really tough the costs...is that just for one cycle?

Hope I will be going for my new blood tests at the end of the week although I won't know until Wednesday next week excrutiating. I hope yours come out better...

It is scary ...I find it amazing that I am quite happy to blow $3000 - 5000 on what may be an almost 'nil chance' still I do want no regrets..


Positive thoughts to everyone...

[Hope2007]

Hi Jane,  I'll be praying for you this week.  I completely understand the feeling about donor eggs.  I have to admit I feel the same way.  I wish you all the very best and let us know how it goes.

My blood tests came back and my day 3 FSH was 7.7- Could FSH levels fluctuate so much?  and my RE has me on injectibles again this month with close monitoring.  I am so tired of this emotional roller coaster that I am now focusing on eating healthy, getting regular exercise and avoiding stressing too much.  Just trying to give my body the best chance possible.

Take care ladies and lots of baby dust and best wishes to all.

[janemelbourne]

Hi Hope!
Wow that is fantastic! My FSH just came back and it has dropped to 22...which has made my RE so much more positive but it is still high. But yours is a fantastic result! That is normal. Maybe your first reading was false..That seems a massive swing from 80 something to 77.
Good luck with the injectibles..

I am seeing my RE tomorrow and will know what we are going to to do then......

[Chookdee]

Hi Guys, syill checking in on the thread.
Wow Hope, that is brilliant news with the 7.7!!...I'm really happy for you.
and Jane, that is a huge drop for you, down to 22!
I'm hoping and praying for all of you to one day reach your goal of being a mum.
Sarah

[janemelbourne]

Hi Sarah,
How is your pregnancy going?
Hope you are doing well.

[carina1]

Hey, Ladies!  Very busy lately with little time to check forum.  So glad to hear both of your bloodtests came back with much better results.  Hope, I have heard often how FSH can fluctuate-- it can do so for years before menopause actually begins.  Jane, just wanted to let you know that one of my dear friends had twins on her first try with IVF when her FSH was 23!!!  It sounds like you are back in the game!!!  Take care all!!!!!

[janemelbourne]

I would love twins!

[Hope2007]

Jane- I am so happy for you!!!  stay healthy and keep doing what you are doing, I pray you have your twins very soon!  Carina's friend had a successful IVF the first time round with FSH of 23 so its very possible!! All the best!

Sarah- thank you for your good wishes. Hope you are doing well and enjoying your pregnancy!!

Carina- good to hear from you, how are you doing?

So overall I am relieved that my FSH is 7.7, I was taking follistim this cycle.  I went for an ultrasound on Monday and my RE saw 3-4 follicles ranging in size from 8mm - 14mm on both ovaries.  He also checked Estradiol.  Yesterday I went for another ultrasound hoping the IUI would be today, he checked Estradiol again. In the afternoon I got a call from the nurse saying I have ovulated already and the estradiol levels have fallen so to stop all meds and no iui this cycle :-(  But I am staying positive and when I read inspiring experiences from everyone I feel happy and hopeful again!

[janemelbourne]

Hi Hope,
It sounds like you are doing really well. I don't see how that FSH of 80 something could be correct.

Thats great you have so many follicles...that was up from before when you only saw two...They could only see one on my ovaries..so I hope that will happen to me..

I saw my RE and she again said i have Premature ovarian failure and my chances are very low...

But we will try and do something next cycle.....

So I am trying to keep healthy and hope my FSH goes down more...

Did you manage to BD around when you ovulated? I hope so! Best of luck!

[Hope2007]

Hi Jane,
I was reading your earlier posts and your FSH was 60, with primulot you went to 30 and now its dropped to 22, hopefully the combination of accupuncture, wheat grass and all other factors will lower it further.  Your chances are low but there is still a chance- I know its hard to stay encouraged and positive sometimes- its only natural, but I keep reading more and more stories about women who go onto have pregnancies with high FSH.  I wish you all the very best for your next cycle.  Atleast they did see a follicle...are you cycling again?

I was quite bummed when the nurse announced that I had ovulated already... my first thought was "there goes another month!" Luckily we did BD on Monday thinking the iui would be on Thursday, when I found out I had already ovulated, we BD'd that day too.  

[Hope2007]

I forgot to add that my FSH of 86 last month seems like it could be an error.  I am going to get another day 3 FSh next cycle just to be sure

[carina1]

Hey, girls!!!  I just got AF today, so I'll be calling RE on Mon. to schedule second IVF.  I feel much calmer this time around-- not as much anxiety about the meds, how to take them, how the crazy schedule goes, etc.  I'm happy to be trying again-- it will likely be my last fresh cycle, so I am just glad to be moving on-- hopefully, with a happy, healthy pregnancy and baby-- if not, at least we can move on with our lives in whatever direction that may mean.  I'm going to ask them if there is ANYTHING they can do differently-- with the meds or with testing-- that will make my chances any better.  I'm going to my regular endocronologist this week for additional thyroid testing just to be on top of that variable.  

Sorry I don't have much time to check in, but please know that I think of you both often and I'm wishing you the absolute best!!!!!!!!!!!!!!  Just remember all the ladies out there have beat the odds and have gotten pregnant with high FSH!!!

[Hope2007]

ALL the very best!!!!!!!!!!!!!!!!, I'll be thinking of you and praying this is YOUR month.  

[AlexLouise!]

Second time I am writing this – the system lost the first version – Grrr.
Anyway the Clomid didn’t work for me again this month.  I have an appointment tomorrow with the specialist but given that Clomid works by increasing FSH levels, then my latest readings must be higher than the 10.6 I got 2 months ago.  I spend quite a bit of time wondering by how much (gulp).  My doctor is so negative about having a high FSH to any degree that I just know that as soon as I enter his consulting room he is going to say “Well, bad news I am afraid”  and will use the phrase “It is what I expected though” a couple of times.

I want to ask him why he isn’t offering me more aggressive treatment, like IUI or IVF which most other women with high FSH are undergoing.  Also the drawbacks of Clomid, like thinning of the lining – without monitoring how does he know this isn’t happening to me? And I don’t know what sort of response (if any) my follies are having to the Clomid because they also have never been checked.

I am now on my third cycle of Clomid and have no expectations of it working this month either.  The symptoms of a high FSH that the doctor mentioned last time – mainly a short cycle are now happening.  I seem to ovulate day 11 and my cycle is only 26 days now (after being regularly 28) – so I feel a bit down at the moment.  Also a friend my age has just told me she is 3 months pregnant – I am thrilled for her but it just adds to my anxiety about when it is going to happen for me!

[carina1]

I'm sorry you are feeling so down. Don't give up-- FSH is highly variable and there are so many women who report pregnancies after having high numbers.  I responded well to the meds-- slowly, and with a lot of meds-- but they retrieved 13 follicles, 9 containing mature eggs, all of which fertilized.  The meds can really make a difference.  I would certainly seek out more effective treatments.  I had three dr.'s opinions and all said to do no more than 3 or 4 IUI's before moving to IVF.  About your cycle, I know how you feel-- the month after stopping clomid I had a 17 day cycle-- I was so depressed.  Since then, I haven't had such a short cycle.  In fact, with acupuncture (or at least that's the only variable) my last two cycles have been 28 days.  I do notice they are a bit on the lighter side, but at least I'm still cycling.  Be assertive, get second opinions, ask all the questions.  Be strong and stay positive-- I'll be thinking of you!

[Chookdee]

Hi alex. Keep your chin up. I had similar Clomid experiences in that my doc never did an u/s to check lining or follicles, and I did wonder........however she always checked my day 21 progesterone levels which were always VERY high ( which may have have given her an idea my lining would be ok ). Is your doc checking your prog levels to see if you're ovulating?
Also, my cycles were 26/27 days on Clomid ( as opposed to 20-23 days previously ) and I had one 31 day cycl as well. So I wouldn't worry about cycle length as long as you are ovulating.
I took 7 cycles on Clomid b4 I got my bfp, however I had the benefit ( for better or worse ) of NOT knowing of my high FSH level ( 11 ) tested prior to treatment starting. I also, thought as each month went by, I was never going to get my positive.
To be honest, if I HAD known about my FSH level at the time, I probably would've been more aggressive with treatment. I wish you all the best!!

( Btw girls, thanks for asking, I am 9 wks 3 days now and so far so good. Fingers crossed for the next 3 weeks! I feel very blessed...)

[AlexLouise!]

Thank you so much for your helpful and supportive comments!  And you were right - I shouldn't have given up because, as it turned out at my appointment, I DON'T have high FSH after all!  The readings over the last 2 months were between 7 and 8!  I asked the doctor if he would diagnose me as having high FSH and he said no, because my blood tests don't support that diagnosis.
I don't need to tell you how happy I am.  All my other blood tests came back as fine too.  My progesterone was 50 last month and 30 (boarderline apparently) the month before.  He was a bit surprised I didn't get pregnant last month given that 50 is a very good reading he said (maybe he meant for my age, as I am 37.5 now).  He doesn't feel that I need my lining or follicles monitored because I am only on 50mgs of Clomid (being a low dose).  The pain I have been feeling after ovulation is my ovaries being stimulated, and that is a good sign he said.  
Regarding my cycle length my doctor said that 26-27 days was ok - he had been referring to a shortening of around 24 days.  So, I am to remain on Clomid and if it doesn't work over the next 3 months he will try something more aggressive.  My next appointment is mid-Nov - hoepfully i won't need it!
I feel that I have been thrown a life line after receiving a terminal diagnosis - terminal in that he had such a poor prognosis for me ever being able to conceive again.
I only wish that at my first appointment when the doctor told me I had a high FSH (10.2 not 10.6 he now says) and had only had a 5% chance of conceiving etc etc, that he also said that this was only one reading and could fluctuate - and not tell me how i wouldn't be able to get pregnant again.  I haven't been able to really concentrate on anything else since - and haven't even been sleeping well.  The other interesting point for me is is that dispite the stress I felt, my body carried on and did its own thing regardless.  I mean, i didn't get pregnant (and at the time couldn't see that i could given the stress level), but despite all the anxiety and doom and gloom feelsings my blood levels for everything were fine, and i guess I could have.  Not sure if I have expressed that in an understandable way or not.
Anyway, the main thing is is that we are green to go!
I will let you know whether the clomid works or not.  I would like to say thanks again to you all for your support - I found it really helpful knowing that there were others 'out there' who knew and understood what DH and I were going through.  And I wish you well on your journeys.

[Sunnieraez]

I am in a similiar situation-33 years old and a really high FSH-do u have any info.?

[Sunnieraez]

If anyone out there can give me some insight on this  I would greatly appreciate it.  I have no idea what to do and nobody I know has ever spiked such a high FSH and LH.  I haven't had a period since July 3 and was wondering if I am doing the right thing.  I went to an RE with lab reports (all were ok except the ones from 2 weeks ago) that say I am in menopause.  The RE gave me Estraidol and wants to do an internal sono....I am freaking out.

[janemelbourne]

Hi Sunnieaez,
If you goodle high FSH there are a couple of websites that will come up with a lot of info.

Also the Premature Ovarian Failure website is good. The link is above in an earlier posting.

[Sunnieraez]

Thanks...I appreciate it.  I am not freaking out anymore (well, alittle bit!).  I have Hashimoto Thyroidis and I am thinking that these irregular bloodworkups have something to do with that "evil butterfly" thing that has caused me so much pain and grief these past couple of years.  

[Sunnieraez]

To all the nice ladies on this forum going through a scary and confusing time-My husband thinks I am a witch, not a bad witch, but a good witch (it is a joke between us) b/c whenever I think something to happen (good or bad), it happens.  And I just cast a good spell on you all with nothing but happiness and wonderful things to come to you because as I read your posts, they touch me b/c you are all so passionate and you deserve what you crave.  I really mean it.  He says I  am like 99.99% accurate with intuition, and get good vibes from you all.  Stay strong, positive and never give up hope! :-)

[cecil75]

Anyone who is experiencing infertility needs to be tested for Fragile X syndrome.  Carriers of FX have an increased chance of POF and a 50% of having a child with mental retardation.  Look into it. Please!

[george_nicholaz]

hi hope, can you pls PM me so that I can have deep inquiry with you, my wife have somehow similar situation with you. Thanks... ***@****