Primary ovarian failure - HELP!

[Anonymous]

Hi all. I'm new to this forum, but thought I'd see if anyone else has received this diagnosis and, if so, what approach you took. I was recently diagnosed by a doc at SGF with primary ovarian failure (POF), which of course was devastating news. However, the doctor declined to repeat the blood tests, which if I'm reading the literature correctly, should be done for a confirmed diagnosis. My FSH levels were sky-high (85), but I think a second opinion is in order. I'd love to know your thoughts and hear from anyone else who has gone through this.
Also, has anyone here had any luck with accupuncture? I'm definitely willing to try. I live in DC, but will travel for a good doc/accupuncturist!

[Anonymous]

Hi. That sucks. I would definitely do a repeat day 3 test, as well as AMH test and day 3 antrical follicle count. That should give you a better picture of what the situation is. Your age will also be a factor.

In terms of docs, I have heard of women with FSH levels in the 80s working with REs - mostly natural cycle IVF, mini-stim IVF, or timed intercourse. I'm pretty sure Dr. Cheek in NJ will do that; locally, perhaps Dr. Sacks. Hopefully someone else will weigh in. You should Google the high FSH boards to get more information.

As for acupuncture, it is not going to do anything to change your FSH level - nothing will do that (I have high FSH myself, so I've looked into this pretty thoroughly). What is may do is balance your hormones and bring greater blood supply to your reproductive organs.

BTW - POF is premature ovarian failure.

[Anonymous]

PP - you are exactly right, I don't know why I keep typing/saying "primary" instead of "premature." (I think there's some new name like POI, because "failure" sounds bad. Ha.)
I am 32, so definitely on the young side for all of this. Is Dr. Cheek at Cornell? Where is Dr. Sacks here locally? I'm willing to give pretty much anything a try before I go the DE route. Don't get me wrong - I am SO grateful for those women donating their eggs - but, perhaps selfishly, I also want to pass along my own genetics. Thank you for your suggestions!

[Anonymous]

Hi there. I've been in your shoes. I'm 31 and was diagnosed with diminshed ovarian reserve by one RE based on high day 3 estrogen. I got a second opionion where they tested my AMH and looked and my anteral follicle count. What they found was, while it wasn't perfect it wasn't cause for concern...mostly because of my age. The Dr. said one elevated number is not enough to make that diagnosis...he wanted to look at the whole picture. Don't count yourself out yet...even if you do have POR you can still get pregnant either naturally or with IVF.

As for acupuncture...I tried that too. It was relaxing but I can't say it made a difference.

[Anonymous]

Sorry - I meant Dr. Check, not Cheek! He is in NJ, at the Cooper Clinic. Dr. Sacks is in DC at Columbia Fertility.

[Anonymous]

Hi,
To make a diagnosis of POF, generally an FSH is drawn 2 times, a month apart. If you go to www.ipofa.org there's a list of testing that should be done. a lot of women with pof have associated autoimmune diseases so you'll see testing for some of those.
There is term "primary ovarian insufficiency" (POI) that is being proposed instead of pof to take away the word failure, i don't get what primary means.
There's a local support group in DC for those of you who are interested. Email [e-mail] for contact info.
Take care,
Catherine
ipofa

[Anonymous]

Interesting, I've never heard of the autoimmune connection - three years in and nobody has suggested I get tested for that. I have been told that a number of women with high FSH before 40 are fragile x carriers, so that could be another test OP could consider.

[Anonymous]

I would def get the fragile X test (esp if you are Jewish). A lot of RE's don't put any stock in the immune issues - so I'd research it before you spend too much money going down that path.

[Anonymous]

Thanks for the recommendations. I am going to another doctor in two weeks for a second opinion. My original doctor put my on HRT - should I stop that before going to the second doctor? HRT (in my case, Estrase) will naturally lower FSH levels, so I am worried I might not get an accurate reading.
Thanks!

[Anonymous]

i posted something similar to another thread, but POF can in some cases be associated with being a Fragile X carrier. Most likely no the cause, but it's something you'd want to know about and can be diagnosed through a simple blood draw.