Where to begin...

[audreydd]

Hi everyone - I'm new here and am desperately looking for advice, hope, guidance, or anything else that you can offer. I am a 28 year old hoping to start a family with my husband, and I was recently 'diagnosed' with a very high FSH.

I have been on a rollercoaster of emotions which began about 6 months ago when my OB/GYN sent me to a RE as a result of an FSH result of 56 (this was not taken on day 3, in fact I don’t know what day it was taken on because my periods have been irregular since I went off the pill a year and a half ago). My OB/GYN started mentioning things like DE's, adoption, etc. which came as a complete shock. I was devastated.

After a consultation with a RE, and 2 'normal' day 3 FSH levels (5.6 and 5) I was told that I should NOT worry about the single high reading (since it was not taken on day 3) and the plan was to try naturally on our own (because we had really only been trying for a few months) and try to predict ovulation using kits - with the idea that IUI/clomid was an option at any point if we got too frustrated given my long and unpredictable cycles.

37 days into my cycle, I predicted ovulation (or so I think) using an at home kit, but after trying on our own, I still got my period 14 days later I went in to my RE for my day 3 blood work last week and got the call that started my own personal nightmare later that day - my FSH was at 50. My RE told me she would recommend using the most aggressive option and starting me on an IVF cycle, although she did not seem very optimistic. She also said that my 'condition' is very rare, that my FSH reading is very high, and the one thing I have going for me is my age (28). She put me on birth control to try and maintain my hormone levels until we can get the ball rolling...I have a meeting to discuss next steps with her next week, but I am finding it hard to sleep, or ever focus on anything else in the meantime.

I have never been so scared and confused in my life. In my heart I feel (and hope) that if we do go the IVF route, it will work, but at the same time, I am literally petrified of starting a cycle and soon after being told that I am not responding (or I have no eggs).

Is there anyone out there in a similar situation? Or has anyone been in my shoes and had a positive outcome? I'm desperate for any hope you can give me!

Thanks so much for listening

[acw]

Audrey,
Many of us are in similiar situations so we understand what you are going through. It is indeed very difficult. The good news is there are many stories of success out there, but it may be a challenging road.
My best advice to you is to really start doing your own research and learn to be your own advocate. Even though you are paying a lot for your fertility care- and maybe out of pocket- you have to realize that in our health care system doctors don't have hours to think about your care and situation- so you have to. And it will give you a sense of control and power that you often don't ahve with infertility struggles. Many of us have had situations where we figured something out that the dr's didn't. you may want to look into dhea, acupuncture and wheatgrass.
Get to know your body- maybe do Basal Body temp charting, start taking notes at every meeting- or have your husband, keep track of everything so that you can reference it if need be.
you will be a mother- and while it may or may not be the way you thought it would happen, the one thing many of us know is that in the end we will have the child we are meant to have.
best of luck to you!

[DixieDoolittle]

Audrey, all isn't lost. You DO have age on your side.

What your tests indicate is that your FSH is fluctuating, but you're having more good months than bad months. Did they do the full panel of hormone tests? Thyroid, progesterone, estrogren, prolactin, as well as FSH? And did they do an antral follicle count? That's a measure of how many active follicles you have on cd3 - it's often thought of as a better indicator of your true ovarian reserves than the FSH number alone.

What's probably happening to you is that the NUMBER of follicles you have available each month in the race to produce a dominate egg is shrinking, thus your FSH number is higher (your pituitary is pumping out more, trying to get those ovaries moving). It make take more gas (FSH) to get that egg out, but that doesn't mean you've got bad eggs. With your age, you likely have a lot of good ones.

I know you're freaked out (I was there two years ago), but try to educate yourself and then advocate for the best treatment. A good RE will look at your age and AFC count and determine the best course of treatment. Just realize that you're likely NOT going to have a Disney-fied TV commercial "pee on a stick oh I'm pregnant!" journey. It's going to be a longer roadtrip, but you'll most likely get where you need to go. But grieving that easy conception is something we all have to go through when we have high FSH.

A word of warning: some REs for some reason known only to them put us high FSHers on clomid initially. Clomid generally doesn't do much for us. With an FSH like yours, you should start on injectables first, and aim for doing an IUI depending on how well you respond. If you are producing 3-4 good sized follicles on a moderate-to-high protocol, it's worth sticking with several IUI treatments before trying full-blown IVF. IUIs are a lot cheaper, they're also less invasive.

When you meet with an RE to discuss further treatment, pop onto the Cycler's thread and the Hope thread and ask us questions. Among the lot of us, I think we've all tried every protocal known to man and there are definately ones that work better for high FSHers.

And by the way, Erin was 28 when she got pregnant - with triplets - through IUI. So all really isn't lost.

Hang in there and good luck!

[audreydd]

Thank you so much for your advice.

My Progesterone, Thyroid, Estrogen and Prolactin all came back normal - just the FSH was considered abnormal. I have had several ultra sounds performed (when they were trying to help me predict when I would ovulate) but an antral follicle count was never performed for me (I will absolutely ask if my RE can do this when I meet with her next week). Through the course of the ultrasounds / tracking my ovulation the RE did tell me that she thought my ovaries seemed a bit small in size, but she felt I didn’t have any symptoms of Polycystic ovaries, or POF for that matter (I don’t feel that I am experiencing any menopausal symptoms either).

I am also going to ask if I can have my "AMH level" checked. When I spoke to the RN at my RE's office she asked me what that was?!? (hmm...surprising). My understanding (from my own research) is that AMH can help 'predict' your menopausal age and give hints as to the # of small follicles in the ovaries... it also can be taken at any point in the cycle as it doesn’t typically fluctuate as FSH/LH do.

[sdeut]

Audrey - You can do that test or not the biggest thing is to get a day 3 AFC. There are people on this board who have had high levels and gotten pg some have natural miracles, some use IUI, though most have through IVF.

You will not really know how you will respond until you try a cycle with stimulation.

[BC-tnahope]

As always you have been given some really good advice. I just want to mention that I think there is a SI*RM clinic in NJ. You could look into them, I know a few girls have had success with them. And also Coop*er clinic (I think) is in NJ very high FSH friendly. Good luck!!

[nooir]

hi audreydd
Don't Worry i am 26 and my fsh is 29 my dr did one cycle of iui and i respond very good with low dose of injectable i will do ivf next month and i will take dhea 50 mg i think that age is more important