Birthday Eve

AF is taking her time showing up in full force and I am quite happy about this. I was worried that Dr. Italian was going to be doing my baseline way too early and he was right: there's enough hormone in my body to trick things for a while.

Today's my last day at 44 - it's sort of an ominous birthday as many clinics will only let you cycle up til your 46th birthday. So I see it as my last year of trying for a child unless I find a clinic that will let me try with my own eggs.

I'm feeling fabulous after my iron infusions - I can't remember the last time I had so much energy, but this is great. If this doesn't help me get knocked up I'm not sure what will!

Ironies and Iron Levels

So I've been on BCPs since my last hysteroscopy, roughly five weeks according to my pill packs. I've bled the entire time without cease...and yesterday was my last BCP. Ironically, I stopped bleeding on the last day of my BCPs...and now I can look forward to....more bleeding as my AF starts.

Oy.

On iron levels, my ferritin values came back today.

461

When the doctor emailed me my values, I did a doubletake when I saw the number. 461? Or 46.1 and he forgot the decimal point. I emailed him and asked for clarification.

Nope. 461. High but not dangerously so and my values would fall over time as the Fe+ in the ferritin converted to hemoglobin in my RBCs. He cautioned that I shouldn't be taking any oral iron supplements. Yikes. I took 65mg of elemental iron each of the last two days, sort of panicked that my levels might be high enough! And 50mg for a few days prior to that.

Wow, I started off at 14. This was a huge spike!

So my irons levels are completely topped up. My last hemoglobin (or was it my hematocrit) was at 36.5 or so, just under the normal mark. With luck, I'll surpass 40 with my next blood test. :-) I am feeling quite perky with high energy levels. I've also noticed that my skin looks rosier, tauter. The bags under my eyes are a wee bit lighter but the upper eyelid skin is remarkably better (it was quite thin and crepey just a few weeks ago). I haven't changed my skincare regime but I have been taking shitloads of pycnogenol and resveratrol since early to mid September. Maybe these antioxidants are finally paying off in ways I hadn't expected? Or maybe the increased iron is helping to get more oxygen to my tissues? Who knows. I just look and feel better.

Well, save for the 10 pounds that slid on in the last month or two due to cycle #4's steroids and gonatropins, then 5 weeks of BCPs. And now I'm just about to start more stims and steroids. God. I hope I can get at least a few pounds off before the end of the year.

Key to the next week:

Yesterday: Last BCP
Tomorrow (Sat): Meds arrive
Sunday: I turn 45. F*ck. My last year of IVF begins.
Monday: Baseline U/S and Bloodwork. Start Stims.
Tuesday-Friday: In California
Friday: Intralipid Infusion

I have no idea when my first monitoring U/S is...oy! Don't you just love cycling by the seat of your pants?

Some Preliminary Bloodwork

Went to see my hematologist today. They took some blood and ran a CBC today and sent out for the ferritin results.

My hematocrit was about 31 before the iron IVs, today it was at 36.6%. Still under the mark. Normal range is 37.7 - 53.7. So I'm still low.

He also did a reticulocyte count which he said indicates how many "baby red blood cells" my body has produced. They can extrapolate from there what my numbers might be.

I asked if I should take orals to supplement and he said it would cause GI problems. I think that he's inclined to give me more IVs should I need them. Good. I'm happy to do them.

Ferritin numbers will be on Wednesday as will my ESR.

"..ferritin [should be] above 70, with an ESR of less than 10mm/hr. If the ESR is above 10 then the ferritin should be above 140." (Source: email correspondence UK hematologist).

Interestingly, a good friend of mine who is also experiencing years of infertility wrote to me today and told me that her ferritin is at 9. NINE. She's having many of the same symptoms as I but she's gotten pregnant a few times, only to lose them in miscarriage each time. She's making an appointment to see a hematologist at Stanford as soon as possible to see if she can get iron infusions done ASAP.

Iron Infusion #5The Day After

Finished my sequence of 5 iron infusions yesterday. I didn't get the V-Man for my IV but a nice nurse - she rocked - she placed my IV with less pain than a typical blood draw. An hour and a half later I was done.

I haven't really noticed any side effects - maybe a bit of headache, a tiny bit of agitation/edginess. I haven't noticed a huge surge in energy, yet, but I also notice that I don't feel the need to take a nap today. Or yesterday. So my energy must be on the rise.

I finally located one of the authors of the "Ferritin and Infertility" paper that was published in Lancet in 1991. I wrote to him yesterday and he got back to me immediately with a copy of the original article (a 2 pager, actually) plus three other articles. I spent a few hours reading and absorbing all that I could.

Essentially, there were 7 women in his study (n=113) where they were evaluating women with scalp hair shedding who had beginning ferritin levels that ranged from 14 to 40. Ages from 32 to 42. All were put on iron supplements (35mg oral, daily) and vitamin C (200mg) and within 28 weeks (roughly 7 months) their ranges had increased to 36-76 and all were pregnant. 3 of these women already knew that they were infertile and the other 4 were merely having unprotected sex before but didn't get pregnant naturally. While 7 out of 113 doesn't jump out and grab you, their beginning and ending ferritin values and the fact that they got pregnant DOES!

So there is a clear connection between ferritin and infertility. One of the authors wrote that they weren't sure if iron functioned in ovulation or implantation. I would reckon that implantation is the issue as plenty of women are able to undergo IVF and produce large numbers of oocytes and high grade embryos without issue, in spite of their low ferritin values. This much I've been able to see in posts on many different IVF boards. I will stab in the dark and say that I would bet that repeated implantation failure is highly correlated to low ferritin values. I would love to see data on this. I also noticed a mention that immunological issues might also be linked to low ferritin values. A study to look at reproductive immunological issues and iron values would be valuable to the infertility world. Hopefully one will be forthcoming.

Iron Infusion #4

Fourth iron infusion today. Nothing remarkable happened...just a bit of burning in my right hand where the iron was being dripped into. I'm not feeling hugely energetic or anything. I wonder how long it will be until I can feel some of the side effects of the iron infusion?

I'm still bleeding quite a bit from the BCPs - that hasn't let up and it seems to be getting heavier. I had a call with the RN from my new clinic yesterday to go over my cycle. She said for me to call her when my period starts once I stop taking BCPs on the 27th. I said, "I've been bleeding non stop for 5 weeks. How on earth am I going to know when my period arrives?!" She just didn't get it. So here's the schedule so far:

• 11-26 take last bcp
  
• 11-30 baseline u/s and bloodwork. start meds if all systems go. sperm is supposed to arrive today but I am going to defer delivery until 12-1 just in case the cycle is cancelled.
  
• 12-3 intralipid infusion
  
• 12-9 or 12-10 probable trigger
  
• 12-11 or 12/12 probably retrieval (add in sclerotherapy if I plan on freezing it all
  
• 5 day transfer OR freeze it all

I just wrote to Dr. Italian to find out why they are delaying my baseline til CD4. I think that it's an excessively large amount of time to wait and want to make sure that they realize how they're scheduling things. I don't have huge amounts of confidence in the RN I chatted with...another cycle of managing the managers I guess?

Iron Infusion #2

Today was the 2nd in a series of 5 intravenous iron infusions. They didn't place a port but are instead moving the IV around each day. Today's was in my left hand between my thumb and wrist. It's a nasty area to place an IV but we've got to make use of my veins as we can.

Yesterday I had a weird taste in my mouth while the infusion happened, but no pain. Today, no weird taste, but the IV area burned like hell. They had to slow down the drip, reposition me, and then after 30 minutes they turned it back up without issue.

No leg cramps or other weird symptoms that I've read in other blog posts. Guess I'm lucky so far. Knock on wood.

I asked the V-Man if it was safe to infuse 200mg a day for 5 days in a row and he said that the doctor is up on latest uses of Venofer and that he was sure it was fine. So I'll stop worrying and just complete the treatment.

Two down, three to go.

Iron Infusion #1

Today was my first iron infusion to get my ferritin levels back up to normal. I drove about 11 minutes to my hematologist's infusion center - I've been here before when I was here for an IVIG infusion. Lots of little old ladies undergoing chemotherapy - some are bitter, some are dealing with it ok. It's a mixed bag. It's just sad for me to see them in their lazyboy chairs with those fluorescent yellow bags dripping into their arms.

There's a male nurse (we'll call him V-Man) who places our IVs and mixes our individual bags of drugs. My bag was about 250ml of dark brown stuff and took about 2 hours to infuse. Very unappetizing. V-Man takes it all in stride and is really quite nice to have around. He said that they'll do a daily infusion each day from now until Saturday and that my doctor's protocol is aggressive and that they'll test my blood on Monday to see where I'm at. I might need a few more bags, but hopefully not. Each bag contains 200mg of iron (venofer brand), so 1g total at the end of the sequence.

After about 4 weeks, all of the Fe+ should combine with apoferritin to form ferritin and this will in turn help my body to create more hemoglobin as it's needed. My hematocrit is at 31, probably lower since I've been bleeding constantly for the last month while I've been on the BCPs (continual "break through bleeding" is what it is). I wish I knew more about the process but I'm reading up on it. I'm looking forward to increased energy levels and, from what I read, I should be seeing my hair grow back in due time. There are some negative side effects: bone cramping, headaches, etc, but they are short lived. The long term effects seem to totally outweigh the negative effects. Fingers crossed. More tomorrow

Low Ferritin Levels and InfertilityCould this be the hidden key to my problem conceiving?

I had a wild hair to follow up on a bunch of blood tests that were done by the hematologist who did my IVIG infusion. This was about a month ago - precisely the day prior to my embryo transfer. So on Friday I made the trip to his office to see if anything interesting turned up.

It did. And how.

It seems that even though I am just slightly anemic (hematocrit is about 31 or 32, I forget the precise number) my ferritin levels are at 14, which is VERY low.

The doctor asked if I bled a lot with menstruation (I do) or if I had a compulsion to eat ice or other odd things (condition: pica) to which I said "no". He asked if I'd tried iron supplements and I told him that I had and didn't like to take them because of the issue that it causes with my bowels moving slowly (that is to put it politely). He suggested that I do intravenous iron infusions - 5 treatments, each of 200mg, that would restore my iron levels rather immediately.

He said that if I was feeling tired or without energy that it would help me tremendously. I said I definitely wanted to do the treatments and signed up with the front desk to do a benefits check (I'm sure it's covered as they covered my IVIG infusion fee).

So upon arriving home, I check with Dr. Google on the ferritin issue to see if it causes problems with infertility and lo and behold....it does.

Apparently there was an anecdotal study done (think it was published in Lancet) where a number of women with low ferritin and infertilty were given iron in one form or another. A large number of them became pregnant within a short period of time (some sources say one month, others say 28 weeks). I hate to give anything too specific as I cannot find the original study - if I do I'll edit this post and include it and/or a link to it.

I am not hugely knowledgeable about the pathway of iron, ferritin, and hemoglobin - it's been way too many years, but apparently the iron that is transfused is converted in the body into a form that can be taken up by ferriton (storage) and hemoglobin (on RBCs). It takes anywhere from 2 to 4 weeks for the conversion from iron to ferritin/hemoglobin to become complete. So it's quite crucial that I do an infusion as soon as I possibly can in order to be prepared for the IVF cycle that I am just about to embark upon.

While the girl at the front desk said she'd do a benefits check on me and get back to me by Wednesday, I think I will take the risk and infuse on Monday so that I am one step closer to being in good shape for my IVF cycle.

I am stunned that something this huge has eluded my doctors and me. I've been borderline anemic all of my life and no one ever did a blood test to figure out WHY until now. We still don't know the cause of the low ferritin but there are three main reasons for that: heavy menses or internal bleeding; poor diet; or, celiac/Chron's disease.

I've had intestinal biopsies for celiac spruae years ago and that turned up negative...

While I don't eat much meat, I do eat a very varied (mostly organic) diet, take vitamins supplements, etc. I would say my diet is pretty darned good when compared to many. Maybe I'm still lacking? I guess I need to really pay attention and make some changes just in case.

I do have very heavy periods - so maybe this is it? I also donated blood a lot years ago....never thought it would cause harm but apparently you can deplete your iron reserves (ferritin) and then it winds up showing up in you hematocrit or hemoglobin numbers (resulting in anemia). So you can deplete your reserves of (in your ferritin) but still show a quasi-normal hematocrit/hemoglobin. That's why my numbers slipped by for god knows how many years.

So I am going to get my iron infusion on Monday with all due haste. No matter what it takes. I can't believe that something so common as iron could be the reason for my infertility.

It gives me a strange sense of hope that maybe I have a chance of effecting a change that can turn the tables at last.

What was he thinking?

This is one of those posts that I'm going to be a bit cryptic in.

So I am on this IF forum...which is ran by a rather famous clinic, that has offices in maybe 7 major areas in the US. Each clinic has its own forum which is moderated by a RE that works in that office.

One of the doctors, at one of these clinics, often pushes his book at the infertility patients on this forum. So I ordered it today, because he said it would tell me what sorts of vitamins I should be eating as an infertility patient. Well, today it finally arrived. Imagine my shock and unhappiness as I opened the book only to see page after page of recommendations for women who are already pregnant. No, seriously, the ENTIRE BOOK is for pregnant women, not IF patients. Nothing for us at all. My heart sunk. What was he thinking?

Mind you, most of these patients are infertility patients who have gone through a great deal of heartache, loss, failures, you name it. You don't dare mention you are pregnant without a caveat in your post title.

I felt that this doctor was rather insensitive to push this book at patients who are in the throes of attempting pregnancy. The title:P*rf*ct H@rm@ne B@l@nc# f0r Pr@gn@ncy made me think that it was for women who are TRYING to get pregnant. NOT for those that are already pregnant.

And actually, the reason I wanted this book is that as an immune patient I have a need for extra vitamins, specifically calcium, vitamin D, fish oils, etc. I was hoping to get updated insights on how much I should be taking to get maximum benefits. Unfortunately, he wrote a single PARAGRAPH on immune issues and all he spoke of were -Rh issues. OMFG. Rh issues are genetically passed...immune issues can be but often are not. I felt that the subject of Rh issues shouldn't even be here but in another category entirely. What can I say?

I went and visited the forum today and tried very politely to let the doctor know that I was a bit upset over the type of book that wound up arriving today. I asked him to please warn patients of the subject matter of the book.

Come on, would you tell an infertility patient who has experienced recurrent failure or loss to go out and buy "What to expect when you're expecting"? You wouldn't. It would be considered callous and insensitive.

I know I'm being a bit sensitive about this, but I felt that he was so very wrong to have pushed such a book on the forum without warning.

I know just what to do though. When I go to see my IF doctor, this week or next, I'll offer to donate it to the office's waiting room. If they say it wouldn't be appropriate (and we know it's not) I'll let them know that the doctor that wrote it, who works in a sister clinic, is promoting it on his clinic's forum (which is so closely tied to the other clinics that it's hard to separate them out). Maybe that is the easiest way to let them know of its inappropriateness without beating them over the head with it. Seriously, I won't be reading it. There's nothing in it for me. Not a blessed thing.

What do you think about this? Any thoughts?

Forgetting CDs

Let's just skip what cycle day I'm on. I'm on BCPs, downregulating, so CDs are sort of a thing that doesn't really apply right now.

I'm supposed to hear from the clinic on Monday whether we'll be doing the sclerotherapy on my right ovary next week. I hope so. I want this to be done with so I can put my eye on the ball of another IVF cycle.

I feel so impatient, like a horse waiting to take off at a race. It's like that, waiting for an IVF cycle to begin. It always feels like time drags so slowly and that it takes forever for everything to fall into place, for the doctor to finally give the go ahead to start stims. I so hate this feeling. This waiting. It's like nothing else matters...time just needs to move faster so that I'm trying again. When I get into this frame of mind, I realize that I am too invested in this...everything else pales in my life. I get hyperfocused.

I dislike that.

I want to be able to go about my life without dwelling on the next cycle, when it starts, what it looks like, and how I get to it.

I think I am probably horrible to live with when I am this hyperfocused. Arrgh.