Thursday, November 6, 2008

FSH, DOR, POF, AFC, AMH ... the real story

Shame on me. The first rule of good communication is: know your audience!! And here I am spouting off three letter words all over the place! I have done you quite the disservice and I apologize. You must forgive me, I was a little thrown by yesterday's news and if you keep reading you'll learn why ...

A basic lesson in FSH, DOR, AMH, AFC, by Polly Gamwich:

(ok, so this is quite long and I apologize for that ... now you see why I hoped you already knew some of these concepts ... people, get with the program!! Ok, but it is rather entertaining so if you try to bear with it and you might get a laugh out of it!)

FSH: Follicle Stimulating Hormone. This hormone is generated by your brain (specifcally your pituitary gland) to communicate to your ovaries to release an egg. If your ovaries are working correctly the message needs only to be at the level of a whisper, some sweet talk if you will: "Hey there, you sexy little ovary creature you, how's about you get yourself a little worked up and kick out a little eggie for me? what do you say?" ... and for most women ... BOING!!!! the egg jumps on out like it should. Each month on CD3 RE's take the value of your FSH to see how loudly your brain is having to communicate to your ovaries to make them put out. When the doctors tested my levels they learned that my brain is not responding in a little pillow talk like it should, instead my brain is screaming "LISTEN ... YOU STUPID, PATHETIC, NO-GOOD, OVARIES ... GET YOUR ACT TOGETHER, QUIT UNDERACHIEVING AND GET TO DOIN' WHAT YOU'RE SUPPOSED TO BE DOIN' ... SHOW ME THE EGG!!!" in order for my ovary to deliver the goods. When doctors see a body working like this (brain screaming at ovaries) the very valid assumption (and the most common cause for this) is that either the quantity or quality of eggs (or both!) is compromised. There are not many good eggs left so the ovary would rather just not produce an egg, but when prodded with lots and lots of rage ... it gives in.

DOR: Diminished Ovarian Reserve. This is a diagnosis. One that I am very familiar with. When a women gets the news that her brain is debasing her ovaries without regard to their feelings ... the assumption and common cause is DOR. It means that a woman has a low quantity or quality of eggs. At conception a female fetus has a finite number of eggs (I've only got as many eggs as I started out with, likely it's less than the average woman, say good old Jane over here. ). As the years go by, we say good-bye to our eggs; and when they are all gone - they are all gone ... bye-bye! But not only is the quantity at risk, also as the years go by the egg quality drops off - because the eggs have been sitting in our ovaries for 20, 30, 40, 50 years - their quality goes down when the age of the egg goes up (this is why you see more miscarriages in older women). The more years, the worse quality egg. For a young woman the idea is that her eggs are hurting in quantity ... MIA. In older women the idea is that the quality is likely compromised because her eggs are ... well, as old as the hills.
  • DOR in a younger woman: likely egg quantity lacking
  • DOR in an older woman: likely egg quality problem

They think this because usually a young woman diagnosed with DOR has a much greater chance of getting pregnant than an older woman ... it's not much of a chance, but it's much better than that of an older woman (shows you what a lousy pool women who are older with DOR are in ... the stinky pool with all the urine ... poor ladies). So the few good quality eggs have a better chance at making a baby than the few poor quality of eggs in an older woman. Because of my miscarriages and their cause being "chromosomal abnormalities" (poor egg quality) and because of my elevated FSH (poor egg quantity), a few doctors have deemed me DOR and have treated me as such.


POF: Premature Ovarian Failure. This is DOR's crazy,
scary uncle you never wanna meet. This too is a diagnosis. Basically the most advanced stage of DOR is POF. When the brain is trying to beat the ovaries senseless with wicked cruelty and verbal abuse ... and the ovary responds with a stubborn stare and blatant disregard ... you've got POF. Your ovaries have just about given up and you're in peri-menopause if not full blown menopause (and there are clinical requirements for each of these things, I just don't think you care about them right now). I am technically diagnosed with DOR but because I have the anti-ovarian antibodies (AOA) and because my mother went into menopause at age 36 (POF) and because I have DOR ... it is very likely that I will be in POF in the near future. I think it's almost impossible that a woman have AOA and not go into POF.

AMH: Anti-Mullerian Hormone. This is a new hormone blood test that tells you the size of the primordial oocyte pool. In English, it tells you how many total eggs you have left in your body; the hormone reflects the signals sent by all premature eggs in your body and adds them all up to generate a number this is not an indication of how many eggs you have on a given month, it tells you the total number of eggs that are lying in wait. The doctors believe that it is the best indicator to let a woman know how much longer she has until menopause - how many eggs are remaining from the finite amount you were decreed in conceptus. A low number of eggs reflects a low AMH value which in turn reflects impending menopause. The AMH range is from 0.0-10.0 (and for infertile women the practical range is 0.0-6.5) a fertility clinic likes to see a woman with a reading greater than 1.24. And anything below .70 is considered LOW (pretty dismal). In March of this year my level was 1.0 ... I barely cleared dismal. This number was much lower than it should have been for a woman my age. This blood level can be taken at any time during your cycle regardless of the day.

So that is the dark side of my story. And it is a dark, dark circumstance when it comes to getting pregnant successfully and making a real life baby. It's almost entertaining to tell new doctors of my FSH, DOR, AOA, and likely POF ... they almost look scared. These are not easily remedied problems. If the infertility industry had a cure to menopause ... there would be pillars of gold in the CCRM lobby rather than just a beautiful water feature. (Inside joke for my fellow CCRM'ers).

Now here is where the mystery begins ...

AFC: Antral Follicle Count. The other way to figure out how many eggs a woman has left is to do an ultrasound of her bits at the beginning of her cycle. You can see (and count!) how many resting follicles she has for that given month. There is a slight coorelation between the number of antral follicles seen on an ultrasound at the beginning of the month as there are number of eggs retrieved on an IVF cycle. An AFC let's the doctor know about how many eggs they are shooting for that month. My AFC's have usually been good. I had one AFC early on where I had a cyst on one of my ovaries, but the other ovary counted 8 follicles (which could mean likely 16 between the two if I didn't have a cyst on one of them!) The latest AFC I had at CCRM was 24. That is an excellent number, so excellent I can hardly do it justice by saying that it is excellent. A woman with elevated FSH and DOR should see less than 10 follicles and in most cases a handful is common ... but here I am two months in a row: 16 and then 24. These are excellent numbers.


Now for the piece de' resistance!

AMH @ CCRM: So if you remember AMH tells you how many eggs you have left in your body. In March my reading said I had very few eggs left. However, a few weeks ago, at the best lab in the country my reading said that I have many, many, many eggs left ... meaning that what? I'm not going into early menopause? I'm sorry, come again? I've been living my life based on this assumption. I've spent time trying to accept this situation and surrender it to God and move on with my life. I have spent time grieving my losses, but also my potential future children (those that early menopause would likely never let me see). But now they are telling me that on the scale of 0-10 for AMH (which reflects how many eggs you have left) I have a rating of 8.5 ... not a 1, but an 8.5 ... this is a huge discrepency and for this ... I needed to consult the doctor.


Ok, so now you should all be caught up!

**HERE IS WHAT THE DOCTOR SAID THIS MORNING, IN REGARDS TO MY INTERESTING TEST RESULTS**


Dr. Schoolcraft is not a wordy fellow. So I started the conversation, "So, did you see my AMH results? ... I mean, what's up with that?" (ok, not really, but close!) and he said that he did and that they were GREAT AMH results. Of course I asked him if perhaps there was a lab error or maybe my vial's lablels got switched (you know, like they do in soap operas ;-) and the doctor said that he didn't think so. He believes my AMH is 8.5 ... let me repeat:

Dr. Schoolcraft believes my AMH level is 8.5

If that doesn't make your mouth drop open in shock, I'm not sure what will.




That's some crazy @$$ news people.





Ok, so he said that the AMH of 8.5 is in line with the AFC they did on the ultrasound a few days ago. He said that this is consistent with the response I had to injectibles late last year (little FSH needed to make many, many eggs) ... he said that he thinks the California lab that did my AMH in March ... is wrong. He also thinks that we should continue on with treatments because clearly I have some egg quality issues (high miscarriage rate and low number of normal eggs in my previous IVF cycles) and CGH testing on oocytes will allow us to find and fertilize the good ones. He believes this is great news because he's hopeful we can get lots of eggs (you know like all those eggs I was supposed to get in the last two rounds of IVF ;-) and he thinks we can get a few good ones from many eggs retreived.

My response: "Woah, hang on there fella, are you tellin' me I'm NOT in premature menopause? but rather on the contrary I have a LONG, LONG time before that happens?"

Dr. Schoolcraft: "Well, it doesn't seem to look like quantity is your problem" (read: no early menopause here)

... so yeah, there it is. I'm ... not? in? early? menopause??? I just couldn't believe my ears. Seriously, this changes my whole perspective on things. This is a serious paradigm shift. I had to take a moment to let it soak in ... that there's a possibility that the battle I've been fighting, is not the battle I've been fighting. I need to regroup, reaim and try again. Maybe.

So I asked him if I have lots of eggs in there, how come I didn't have OHSS during my high stim cycles? (basically when a woman who has a lot of eggs gets too high a dose of medications her body can't process them all and shuts down, mine did not do that) the doctor said that the protocol was very unique with three types of suppression but really he can't be sure why, he thinks I should try a much more standard protocol, with a much lower drug dosage.

And in full Schoolcraft style, he didn't have much more to say ... other than "Good luck".

So there are four theories as to what might be going on here:
  1. The AMH value of 1.0 in California was wrong, I am not in early menopause the elevated FSH is from something other than DOR/POF. My AFC and AMH line up and only my FSH is elevated (which could happen for a few rare benign reasons).
  2. The AMH value of 8.5 at CCRM is wrong. Labels were switched, satan is cruel, this nice juicy number is being waved in my face like a steak to a dog. (Yes, someone is supposed to be a dog in this scenario and it's me).
  3. The rising AMH is a signal of cancer (there is research that shows that elevated AMH communicates the presense of certain types of tumors. The reason I'm withholding belief that this is the problem is because the AFC matches the AMH ... if I had 10 AFC, then there would be cause for concern).
  4. This is a miracle from God.
Berilac and I agree ... this is odd to say the least. We need to verify this claim. We want to repeat these tests at both labs and see what happens. Dr. Schoolcraft said that they might come out respectively the same at both places (1.0 in CA, and 8.5 in CO) and that the lab where we got the 1.0 could have used a cheap kit to run the tests ... whereas CCRM runs the expen$ive tests.

... so if we get the same results ... we'll believe the CCRM results. But we'll have to wait and see.

Ok, now seriously, is this hidden drama camera or something? My life is FILLED with drama!! I can't even believe the twists and turns this journey has brought with it. Man alive, I did not see this one coming. Here's hoping and praying that this is the amazing news we've been hoping for ... what a true miracle it would be regardless of how it comes to pass. I'm still skeptical though ... Thomas was doubting ... so it's ok if I do to too, right?

56 comments:

Andrea said...

Yay! I like theory #4! So happy for you! Good luck!

BB and MTB said...

Okay, I promise I don't mean this in a bad way, but you have a whole other vocabulary when it comes to IF. You know too much about all this stuff, and I am sorry for that. (I hope that makes sense).

BUT, on the other hand, this sounds like really good news. I am hopeful that CCRM has the answers and you get a litter out of 'em. Yes, I said it - a whole dang litter.

Tremendous, gigantic, humongous good vibes coming your way.

Joy said...

Wow! Thanks for the clarification of acronyms and terms. I think you went into the wrong field of work. You could totally switch over and be an RE now. I thought I knew stuff about IF, but I was only touching the tip of the iceburg. Sounds like you got some good news. I'll be interested to see what you decide to do from here. GL!

Just Me. said...

Oh wow, Polly!!!! I'm reading and re-reading the entire post, just to digest it. What an education! And you really have been through so much. I wish I was there to give you a hug!!!! Thank you for clarifying things for us.

I agree, I love this theory the best: A miracle from God.

Praying that the drama stops for you and that you'll have that resolution everybody's been praying for you guys.

((((hugs))))

ps This Dr Crafty of yours sounds like my FS. Hmmmmm......

Wendy said...

I vote for "this is a miracle." I am so happy to hear your news, Polly. Your post sounds so excited and hopeful! I can understand you being nervous, too, though! You've been through so much. I'm really excited for you and your husband!

Anniep said...

Holy fabulous AMH! Can you get the AMH redone at both places? Could it be too good to be true? Where's the fire? Could this possibly be???

Oh I hope it is so... I SO hope it is.

Katy said...

Polly, that is the BEST news I've heard in ages. Amazing. Congrats. I hope that CCRM helps you produce oodles of healthy eggs so you and Berilac can finally have your family. No more DOR for you! So, so happy for you, my friend.

Tara said...

Thank you sooooo much for the explanation. I feel so much smarter now. And, much more educated about my own IF. You are a true friend :)

This is great news - I am convinced that the Cali lab is just wrong and you are going to be successful with CCRM.

Daisy said...

I'm with Tara....thank you for the translation! I'm so excited for you, I am grinning ear to ear. :-) I can't wait to hear more!!! Yay God!

WCAT said...

LOVE the definitions...by far the easiest way it has been explained so I will remember it. It brings "communication skills" to a whole new level.

So glad to hear the results and hope that the CO tests are right..it looks like your body's performing like Lance Armstrong in that high altitude.

Great to hear your sense of humor throughout each post. I'm thinking about you and Berilac always. Keep us posted. This drama is better than Grey's Anatomy.

Lisa said...

Paradigm shift? Oh yeah!! Bring!

My instinct is that the CO lab results are correct. You've got the AFC, you produce the eggs, you are young. I have so much hope for you, and I hope my gut is right!

Maybe, as Schoolie said, the other lab uses crap equipment (although that would suck for everyone), or maybe someone read an original result of 10 and inadvertently turned it into 1.0.

Let me tell you, I worked as a bookkeeper & teller as a young adult and have spent my career as a writer-editor working closely with text at the single-character level, and that kind of numbers error is SO common and will occur, sometimes, no matter how careful or skilled a person is (even when the whole process is set up to check and triple-check the info before recording/passing it on).

Humans. We think we know what we're reading because everyone else's numbers we're testing are of one range, or because the specific person's results seemingly "should" be in a particular range, or we just don't see it or process it correctly — we screw up.

So, I vote that your new AMH reading is CORRECT. And the reward for seeking out the additional expertise you KNEW you needed is going to take you ALL THE WAY to that miracle.

Okay, I'm done going on and on about one tiny point like an old person. Thinking I'll skip a dip in the urine-filled pool today and take my hardworking eggies for a nice jaunty ride in the hills. :)

GREAT news, Polly — keep it coming!!!

Lisa said...

WOW!!!! I am so happy to learn that you aren't in premature menopause!!! What a total happy shock this must be for you!! You have SUCH A GOOD SHOT AT THIS!!! i'm pulling for you all the way!

Kathy said...

Thanks for the explanation! Wow, that does sound like a world-rocker of a test result! I say, choose to believe the best and go with it. God does work in mysterious ways at times. Praying for all success for you. : )

Lost in Space said...

Wow, Polly!!! Everything from CCRM (AMH, AFC) points in a whole new direction for you!! I pray the previous protocol you were on was just wrong. With the response to the stims you had on low doses for IUIs, this makes perfect sense. I truly hope you get your answers soon followed by a baby in your arms. (:

Arpee said...

I love your funny but practical descriptions of those acronyms!

Any news on the AMH retests?

Susan said...

I woke up in the middle of the night and felt the need to pray about my LOW AMH I googled infertile women of the bible and read your blog. I am encouraged. I am 43 with normal FSH and really low AMH (from CA) I know God is in control and will praise Him no matter the results but your blog reminded me Satan wants me to beleive it is impossible. Thanks you!

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