Tuesday, October 18, 2016

Getting Serious About My Iron Deficiency Anemia - It's Hysterectomy Time!

WARNING: May be too graphic a post for some

I was diagnosed with Iron Deficiency Anemia more than thirteen years ago and have been treated with iron infusions for more than five years.  Although a hysterectomy has been suggested a few times over the years, I never took it seriously.

I am now.

So what has changed?

I am not 100% certain my anemia is caused by my cycle.  We've stopped my periods with the use of birth control pills.  I still needed infusions.  I've lessened the flow radically with Lysteda.  Still needed infusions.  Had to give up the pills because, after an extended time on them, I just felt down and lethargic (yes, even more lethargic than with my anemia...I felt the difference).  I quit the Lysteda because the migraines it caused became worse than the pain associated with my period.

But, my periods have become worse.  I did a crash diet a few years back and it seriously altered my cycles.  They were never great to begin with but they've become absolutely unbearable since.  My cycles now range any where from about 14 days apart to 45 days.  The first day, bleeding is lighter but every ligament in my abdomen and right thigh (isn't that odd???) feels like it is being pulled painfully and the cramps are bordering on labor type contractions (not quite that bad but getting close).  On the second through fourth days or so, I am suffering through terrible flooding events.  I can be sitting then stand up and not only will I bleed through enough to immediately soak a HUGE overnight pad but it runs down my leg and soaks whatever I am wearing.  Sleeping during these nights means I need to lay on top of beach towels because I will soak through even though I am sure to change my pad in the middle of the night.  After that, my period turns more normal but there are still the occasional flooding and cramping events and my period goes on and on and on.  This last one lasted about 23 days!

That can't help my anemia, right?

So, I am serious about the hysterectomy now.  I am scheduled next week.  At this point, the doctor will be taking my uterus, cervix, and tubes.  She will likely leave the ovaries which is fine because I really would prefer not to be thrown into menopause.

My infusions have also been more frequent.  I've been getting them every one to three months.  It may take awhile after the surgery but my hope is that they'll become more infrequent or stop altogether. 

I'll keep you updated.

Tuesday, October 6, 2015

Month Two of Lysteda (Tranexamic Acid)

I posted last month about how I was trying generic Lysteda (Tranexamic Acid) to slow my period. It worked and it was amazing!

I only took the pills twice last month and what a difference it made.  I ended up having a light period for about eight days.  That length of time is not unusual for me but I do usually have several days of heavy bleeding and really appreciated not having to go through that.

So a month later and my period starts again.  At the first sign yesterday, I took two tablets in the morning and then again in the evening.  Stayed light.  Took two this morning and still very light.  I think I'll take two more at bed time (they make me sleepy) and then just see how I'm doing tomorrow.  If it picks up, I'll take two more but I'll have to do it when I'm home for a few hours.  I just feel so exhausted after taking them but a couple hours later, I'm doing much better.  The only other side effect seems to be a slight headache.  Nothing major and doesn't last too long.

I just had an infusion at the end of August.  I am hoping my slowing my period way down, I can put off another one until after the holidays.  So far so good :)  I'll keep you updated! 

If you've taken Lysteda (or the generic brand), I'd love to hear about your experiences as well.  Thanks!

Tuesday, September 8, 2015

Discovering Lysteda and Slowing Down My Period Way Down!

I haven't had much to add the last couple of months.  Just been on the ever constant cycle of infusions.  I had my last infusion in June.  I decided that, despite the way iron pills affect me, I was going to find a 'gentle' iron and take it daily.   I really wanted to prolong the time between infusions.

Oh, the daily iron caused so much pain.  I 'stomached' through it but I just don't do iron pills well.  So, in July my doctor decides we should check my levels.  My ferritin was down to about 10.  So discouraging.  I lost ferritin and iron more quickly that month. 

Well, I chucked the iron pills.  Not worth it.  I also put off my infusion a month.  With a level of 10, I'm considered borderline and they are okay if I wait. 

So, had my infusion in August.

In the meantime, my OB GYN and I have been discussing what to do about my period.  Not sure my period is the cause of my iron-deficiency anemia but it can't be helping. 

A couple years ago, I made the mistake of trying the hCG diet. Biggest mistake ever! That threw my period, which has always had issues anyway, into a tail spin.  I bled heavier than ever before and was battling dizziness and the feeling of passing out.  Stopped the diet but by that time, it has already done on a number on my body.  My periods have been a lot worse since that diet to the point where I suffer from 'flooding' during many of my cycles (and anybody who has been through 'flooding' knows exactly what I am talking about).

A hysterectomy may be in my near future but we're trying a couple other things first.  Long story but an ablation is not the way we are going to go.  With a heart-shaped uterus, it could make things worse.

My doctor gave me a prescription for Lysteda.  She said it would lighten my period.  After she gave me the prescription, I got my period but it was really light (which is a rarity these days) so I didn't fill it.  Then a few weeks later, I got my period again.  It started yesterday and it was so incredibly heavy.  I was filling one of those massive overnight pads in less than an hour.  I decided to go fill the prescription.  Was surprised to find there was no copay for the generic brand, Tranexamic Acid.  I had looked online and everybody was discussing how pricy this medication was.  If it was over $100, I had vowed not to pay it but you can't beat free!

Came home and took two pills.  Wasn't expecting the utter and complete exhaustion that came along with those pills.  Took a look at the bottle and it warned not to drive or operate dangerous machinery.  No problem.  Took a nap.  Woke up about 90 minutes later and my period had slowed to spotting.  Took two pills again at bedtime and there had only been a light flow.   When I took the first two pills, I had been bleeding very heavily still.

I haven't taken them yet today because they do cause me to become very sleepy and I have a busy day ahead of me.  But, my period hasn't picked back up yet. 

The doctor and pharmacist said these pills are non-hormonal and you only take them when you have your period.

Don't know if this will prolong my time between infusions but I'll keep you updated.  Even if it doesn't, just slowing down the bleeding is so very much worth it.  I talk to so many women who do have IDA as a result of heavy periods.  Not sure if Lysteda will help but couldn't hurt to talk to your doctor. 

NEXT DAY UPDATE:  So, I was so busy carting the kids around yesterday and did not want to be sleepy so I did not take any more pills.  My bleeding was just light until about mid afternoon.  At that point it picked up but still wasn't super heavy.  I decided to wait until bed time to take more pills but by that time it was light so I didn't take anything.  Today, still spotting.  So, recap, I took two pills twice on Monday and that has been it.  It definitely changed the flow and made it much, much more manageable.  I usually only have two to three heavy days and then it is manageable.  If it is stays this way, I'll just wait until my next period and start taking it as soon as it starts getting heavy. 

Wednesday, June 3, 2015

Infused (again)

I posted last week about feeling so fatigued and it was time to get my blood levels checked.  Yep, I was right, no ferritin left in my body and my hemoglobin was dropping as a result. 

And, so, I got right in there for an infusion.  Still using the Ferrlecit and still only doing one infusion rather than two.  I think for me mentally, doing one infusion is so much easier.  With the Venofer, I was doing five infusions every four months or so and, so one infusion every three months seems really nice.

The infusion itself went smoothly.  I still get Benadryl because I have reacted before and so I just rested and snoozed the entire time.  I think the Ferrlecit infusion ends up taking about an hour and a half.  They do the Benadryl and then the Ferrlecit and then I have to wait a half hour while they monitor me. 

That night, I was exhausted which I usually chalk up to the Benadryl.  I slept for hours that day. 

The next day, I just felt sort of icky like my body was fighting something off and I ended up feeling that way for the next couple days.  I haven't had that with the Ferrlecit before so I wonder if it is because I waited too long.  It almost seems like when I have no ferritin, my body fights off the new iron.

So, next time, I'll try and catch my levels when they are down around 10 or so.  I do think having a little Ferritin in my body for the infusion helps with the side effects.

Tuesday, May 26, 2015

Waiting on Blood Work

It has now been a few months since my last infusion.  I love the Ferrlecit.  Although, two infusions is recommended, I've been doing one and then it is about three months before I need another.  With the Venofer, I'd have a series of five infusions over five or six weeks and still need a new round three to four months out.  This new iron is so much easier on me.

I have been so fatigued the last few weeks.  It's just that fatigue that makes it hard to get out of bed and with a teen and a tween, I just don't have that luxury.  I have to get my son to classes.  He also does tae kwon do and Scouts.  My daughter dances most days of the week.  I also homeschool my daughter.  As hard as it is, I do function but the fatigue is overwhelming.  One nice thing is that I've been falling into bed at night and sleeping hard for eight to nine hours.  Always appreciate uninterrupted sleep.

So, today I had my levels tested.  If my ferritin is below 10, I'm sure I'll be in for an infusion.  I'll keep you updated.

Thursday, May 21, 2015

Precautions Recommended for IV Iron

As I draw near to getting another infusion, I am looking up the different types of iron.  I seem to be having a better time of it with the Ferrlecit so I will stick with it as long as my hematologist is willing to give it to me.

I found this article today:

New Precautions Recommended for IV Iron Supplements

Although nearly two years old, I still found it interesting.  Dextran was the worst iron I've had.  They started with Dextran they said because it is cheapest.  However, it also seems to have the more risk for serious reaction.  Indeed, I had a horrible experience with it during my second or third round of infusions.  That seems to be the only iron of which they require a test dose. 

I think, all in all, this is a good article to read.  I don't think it should panic anybody but it is good to remember that severe allergic reactions don't always happen during the first or second time getting infusions.  You don't want to take your infusion for granted and you want to stay carefully monitored.

Wednesday, March 18, 2015

Ferrlecit - My Favorite Iron

Is it possible to have a favorite iron?  Seems strange but, yes, I do have a favorite iron now.

Posted last time about how exhausted I was and I was exhausted.  When my ferritin levels get low, I just get so tired and try to fit in naps when I can.  I'm a pretty busy mom and just don't have time for that level of exhaustion.  Along with the exhaustion comes such guilt.  I feel so guilty for needing naps or just not being able to do it all. 

So, had my levels tested in February.  My hemoglobin was fine.  I think it was in the eleven range which is great for me.  My ferritin however was below 10.

Just a little side note:  If you are tired and suspect anemia, always ask for your ferritin numbers.  Even if your hemoglobin is normal, a really low ferritin score indicates that there is a problem and you will be anemic soon.  Often, exhaustion sets in once your ferritin is low.  You can avoid all the additional problem with anemia if you treat the low ferritin.  Iron pills will usually take care of this.  I've taken iron for so long though that it really hurts my stomach and so now I have infusions.

I had my last infusion in November.  Wrote about that experience here:

My Infusion with Ferrlecit

Ended up having only one infusion because of traveling and it worked wonderfully without all the usual side effects. 

The only part I didn't like that last time was that they 'pushed' it meaning they injected it into the vein over the course of several minutes.  I could feel it and didn't care for that feeling.  However, it was still preferable to side effects.  My blood pressure did drop but went back up shortly thereafter.

So, this time, same deal.  Ferrlecit.  I told the doctor I preferred this iron and she said she did too.  The nurses told me that they were no longer 'pushing' it into the vein now.  They found there was a higher risk of complications so they switched it over to a 20-minute drip. 

Because I've reacted before to iron, they started me with Benadryl in my IV.  I suspect this took about 20 minutes but the drug always makes me groggy so not too sure.  They then switched the bag.  No problems with it whatsoever.  Afterward, they added a bag of fluids.  Not sure why.  They don't usually do that but if it helps the process somehow, I'm fine with it.  My blood pressure stayed in the normal range this time and I went home about an hour and a half after I had arrived.

The only side effect I had was exhaustion.  My exhaustion after my initial infusions is even more pronounced than my exhaustion just before.  Not sure why this is but for four days I was so tired.  For this reason, I like to keep my infusions scheduled for Thursdays or Fridays.  Easier to rest on weekends. 

I told my doctor I'd be just fine having one infusion every three months.  Before this, I was having five every three to four months so she agreed that rather than do two, I could stick with one.  This makes it so much easier for me. 

It's been about three weeks now and I can tell my energy is up again.   I have to say Ferrlecit is the easiest iron I've had so far.  I know everybody is different and everybody reacts differently, but I'll continue with this iron until we figure out how to prevent my iron from dropping in the first place.

If you've had experiences with Ferrlecit, I'd love to hear from you.   If you are just going through infusions or about to go through one, I'd love to hear from you as well.  Take care!