Very High FSH

[Hope2007]

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?