My thyroid is doing strange things & iron update

I went a week ago and had my pre-thyroid appointment bloodwork done.  This included my newest iron studies that were done after taking the Rx strength iron for the last 3 months.  Being the impatient patient that I am I was unwilling to wait the week until my appointment so I called my endocrinologist.  She said that my thyroid labs came back kinda funny and she was confused.  My TSH was up to 1.08 (the highest it’s been in a long time) but that my free T4 was off which it’s never been.  She wanted to know if I was willing to have it repeated a few days before today’s appointment.  So I did.  Today the T4 was back to normal but my TSH was 0.26!  She said she had never seen anyone’s TSH change so much in 1 week.  Mine had done this once before too.  She isn’t sure what to make of it.  My last ultrasound a month ago showed that there are no more nodes on it either.  Strange.  But I am full of hyperthyroid symptoms again…………..lovely as they are.  Except that I’m gaining weight this time.  Probably because my appetite is out of control though.  So, the plan for now is to check it again.

On to the iron studies:  my ferritin was 7 three months ago and now it is a whopping 12.  Major greatness after 3 months of oral iron therapy!  Off to call my primary to see what to do about it now.

Results are in

The latest battery of testing is done and I have results:  

The single fiber EMG was completely normal.  According to the neurophysiologist that did it this definatively rules out MG along with the fact that my blood work for MG was normal and so was my regular EMG.  He had no other suggestions for what this could be either.  The only things he did have to say that was good was that a lot of “really bad things” have been ruled out so this should reassure me.  And that in his 20+ years of doing this he has seen quite few people come in with similar symptoms and have a totally negative work up like me.  And then one day the symptoms disappear as mysteriously as they appeared and they never do find out what it was.  

The CT scan of my chest thankfully showed that I have normal lung anatomy: no tumors, abnormal fluid, or inflammation, etc.  Wonderful, wonderful news!!  The only abnormality on the scan was that my thymus glad is larger than it should be.  This is a common finding in autoimmune disorders.  So, it may be related to my Grave’s or it may be related to all this that is going on.  My Grave’s is in remission so not sure if my thymus should still be enlarged from it or not.  Will have to ask my endocrinologist.

For now I’M DONE!!!!  No more tests.  I’ll just live with this for a little while longer and see what happens.  Maybe I’ll be one of those that it just mysteriously disappears for too.  I do see the pulm on Sept 26 and neuro on Sept 30 so I’ll ask them what they think and then go from there I guess.

Oh and not sure if I ever posted about my brain MRI but it was normal too.  So no MS!!!  Whoo hoo!

It’s all just so frustrating in the end.  I just want to know what’s wrong with me.  I can live with whatever it is but the not knowing is torture.  I was driving the other day on my way to the SFEMG listening to Alicia Keys and this short song came on and I about lost it as it so nicely describes where I am sometimes now.  It’s titled Prelude to a Kiss and here are the words:

Sometimes I feel like I don’t belong anywhere.

And it’s gonna take so long for me to get somewhere.

Sometimes I feel so heavy hearted but I can’t explain.

Because I’m so guarded

But that’s a lonely road to travel and a heavy load to bear.

And it’s a long long way to heaven but I gotta get there.

Can you send an angel?  Can you send me an angel to guide me?

Now don’t get me wrong….I’m nowhere near ready for heaven!!!  But I could use the angel’s guidance at this point!

Happy stinking birthday to me!!

So yesterday was my birthday.  I’m 32 now!!  A major milestone huh!!  In all seriousness it was not a great day.  It started off with me feeling blah like usual.  But I was at least in an upbeat mood.  My husband and I were on our way to lunch for me (without the kids too!!!) when the daycare calls to say that Benjamin (my oldest) had just puked all over the place!!!  Uggh….so much for lunch.

Hubby was nice enough to go and pick him up so that I could go and get all the party supplies for the kids b-day party on Sat.  Then later in the afternoon I pick up the other two and by 6 ish Samuel is puking.  Jennifer had her turn around 9:30!!!  I decided right then that I am cancelling all holidays that have anything to do personally with me as I seem to remember cleaning up puke on Mother’s Day too!!!

On the medical side of things for me, I have had tons of blood work done in the last few days.  My muscle damage tests (CPK, LDH and liver enzymes) are all normal.  Today I had a sed rate, C-reactive protein and rheumatoid factor done to check for inflammation etc.  No results on them yet though.  Hopefully on Monday I’ll hear.  

Oh and my newest symptom is muscle pain.  I played tee ball with Ben the other day and today is the first day that my triceps in my arm don’t ache like mad.  I felt for 2 solid days as if I had swam the entire English channel!!!  

To answer some of Jana and Rachel’s comments:  no tensilon test.  I don’t think it is commonly done around here in the US anymore.  But I have an appt with my regular neuro on Thurs this week so I’ll ask him then.  As to the ice test….my eyelid does get droopy but not to the degree that that test would be possible.  I think if you go to the about me page there is a pic of me that has the droopy lid in it and that is about how bad it gets….maybe a tiny worse at times.  But never to the degree you are saying.  Thanks for the insight though and keep it coming!!

8/24:  Edited to add:  I went back and looked at the picture and it isn’t reflective of what my lid looks like when it’s droopy.  I picked the best pic of course!!  I’ll have to go back and find one and post it.  But it still doesn’t get droopy enough to do the ice test and it’s very unpredictable as to when it will get droopy.

Still no answers

I had my nerve conduction study and EMG yesterday and am still no closer to a diagnosis.  Also got the results of the anti-MUSK antibodies bloodwork which was negative.  This doesn’t mean I don’t have myasthenia gravis (MG) but is leaning towards that NOT being the diagnosis. 

The doc who did the nerve conduction and EMG was really cool and I liked him a lot.  He was just as frustrated as I was during the test as he said he could tell that there IS something wrong with me based on the amount of muscle weakness he could elicit during his physical exam but the test just didn’t show it.  He tried hard to get something to show up but nothing did.  This is good and bad.  Good in that I don’t really want to have anything wrong with me but bad in that obviously something IS wrong with me but we just cannot figure out what.  And until we figure out WHAT we cannot treat it.   The next step in the process is to have some more bloodwork done today to test if my muscles have any inflammation in them.  And then in 3 weeks I go back to the hospital I was at yesterday and have another test called a single fiber EMG.  This will be the final determining factor as to whether this is MG or something else.  The doc said if this one is negative then it is something else and the next step is a muscle biopsy. 

I’m pretty scared and frustrated at this point.  I mean I turn 32 tomorrow and I feel like I’m turning 72.  I can’t walk up one flight of stairs without having to stop and catch my breath and having my legs feel like jello.  I drive somewhere and try and get out of the car and it’s not easy to do b/c my legs don’t work right.  I try making my Goddaughter a cake and it takes me twice as long as it should b/c stirring food coloring into the frosting is nearly impossible b/c my arms are so weak.  And the longer I sit at this computer typing the more double my vision gets.  Those are just some examples too.  What is wrong with me?????  My husband says I’m just out of shape!!  But I don’t think being out of shape causes all of this.  Today my muscles actually hurt on top of being weak.  I feel like I just competed in some sort of triathalon or something.  Or that I did some sort of extremely strenuous activity and used muscles I didn’t know I had.  But I didn’t.    I’m over it!!!

But at least I got good news on the pap smear that I said about in the last post.  I have to have it repeated in 4 months but the cells themselves are fine.  I had early pre-cancerous HPV changes 10 or so years ago and this time it just showed that the HPV virus is active again.  So it could turn pre-cancerous again at any time.

A personal connection

Tonight I’m taking care of a patient with myasthenia gravis (MG).  I especially took her in my assignment to be able to talk to her about the disease and how it has affected her life etc.  She is very nice and has a kind heart so I shared with her my recent struggles and symptoms.  It’s been quite nice to make a personal connection.

At the same time it makes me a bit more nervous for my upcoming appointment.  The reason why is that she first asked me what my symptoms are like and responded with “Hmmm……..yup sound familiar.”  Uh-oh I’m thinking!!  Then a bit later she tells me that my eye rims are red and says that’s a symptom…….really???  Then a bit later asks me if my eyes ever flicker?  Yup.  And at this point I jokingly fuss at her to stop asking me such questions as she’s making me realize that this probably is my reality.  Then we both have a good laugh.

She goes on to tell me that while it is a burdeon it really isn’t that bad and like anything else it’s what you make of it.  Of course, she is 74 and retired and I’m almost 32 with a hubby, 3 young kids and a full time nursing job working night shift!!!!  But I do know that God put me on this path for a reason and while I don’t know that reason and may never, He does have a plan for me and if I let him lead me then I will be OK.  Sure, I’ll have bad days but I’ll have good days too.  And in the end I’m still #1 a wife, #2 a mom, and #3 a working nurse.  MG will have to take #4 spot.  I’ll just have to have His help with keeping it in that order.

On a positive note too I talked with one of our lung docs and told him what was going on and he is willing to take me on as a patient if MG is what I have.  Lung capacity is something that has to be closely watched and he knows enough about it to comfortably take care of that aspect for me.  That is wonderful news as he and I get along quite well and I will feel better knowing he is involved in my care should I need it.

All in all I’m doing ok.  I’m a bit depressed but I don’t think that’s all from this looming possibility of MG.  I have a ton going on right now and I think it’s just the combination of it all.  My daughter just had major surgery and we are weaning how thick the liquids she drinks (her blog is in my sidebar) and won’t know if the surgery was successful until Oct, tonight is my last night at my current job and then in 2 weeks I start a new one, my oldest is starting kindergarten in 2 weeks, and my husband goes back to being a high school teacher in 2 weeks after having the summer off.  So life is quite busy and stressful right now.  I just don’t have time for health issues of my own KWIM??? 

But, like I said……….I know with His help I can make it through this.  What other choice do I have right

Having a rough night

Been having a rough few days actually.  I had gone on vacation with my family and felt pretty good.  Though I did notice that I get tired pretty easily.  Even my husband, who doesn’t usually notice things like that, noticed.

Now I have a cold and it’s kicking my butt.  Summer colds are the worst anyway but this one really has been a gloomy one.  It takes not much to make me short of breath as heck. 

Tonight I came to work since it and tomorrow are my last two nights at this job before I start my new position.  How can I miss my last few nights with my current coworkers you know?  But I’m struggling.  Luckily it’s been slow.  I was sitting at the computer for a little while working on Jen’s blog and got up to go to the cafeteria to get some dinner and I could barely stand, never mind walk!!  Yikes!!  I limped my way there and got some dinner but I’m definitely in a bad way.  Not sure really how to describe it except to say that my legs just feel quite weak and as if they don’t work…..at all. 

Luckily my eyes aren’t bugging me too much tonite though.  That is the most annoying symptom that I have.  If you’ve never had double vision then consider yourself lucky as it is quite distressing to deal with.  Closing one eye makes the double vision go away but then your depth perception goes along with it. 

All in all I just feel kinda blah.  I’m just praying that I can get some answers soon……whatever they may be.  And then some sort of treatment.  I’m tired of being tired and weak.

I’m praying to God to lessen my burden on this path that He has me on.

Next step in the process done

Today I am one step closer to a diagnosis for all these symptoms.  I had some more bloodwork done.  I had had some done awhile ago that looked for anti-Ach antibodies which are sometimes positive in MG.  They were negative in me.  If you have lots of MG symptoms and your anti-Ach are neg then next they do anti-MUSK antibodies.  Unfortunately these can also be negative and you can still have it as there is still much they don’t know about the disease and it’s lab markers.

But while the Ach ones are done at the regular lab the MUSK ones have to be done at a special genetics lab.  So a phlebotomist had to come to my house to draw my blood and fed ex it to the lab!!  But it’s done.  Not sure how long it will take the doctor to get the results but at least it is in the process now.

Hello world!

I thought long and hard before starting a new blog but then decided I needed one for MYSELF.  I have several already but they are all about other things and none that I can really talk about myself.  Although I guess there is one that I can but it really concentrates on my spiritual journey instead.  So here I go.  I have all the others on blogger so I decided to change things up a little and go with wordpress for this one.  It’s funny as  you get used to doing something one way and so getting used to this layout is difficult!!  (But I can do this one from work so that makes it nice   )

So, my life…………it’s happy, sad, interesting, busy, fullfilled, scary, hopeful, and I wouldn’t trade it for the world or anything in it.  I’m Tracey!  I’m 31 and happily married to my hubby Shawn.  I work as an RN doing 12 hour night shifts in a critical care unit.  Some nights I love it, some I like it and some I hate it!!  But I think that’s pretty typical of our jobs right?!?  I have 3 wonderful kiddos.  Benjamin is about to turn 5 and start kindergarden!!  Yikes!!  He’s so excited though.  Jennifer and Samuel are twins and about to turn 3.  Jennifer is a spunky stubborn girl!  She needs to be though as she has some chronic health issues.  Samuel is a typical boy.  So physical but oh so happy too!

And then there is me.  If you want to know more about being a nurse you can visit my nursing blog at http://nighttimenursing.blogspot.com.  You may be wondering why I picked the link I did for this blog.  seeingdoublesob.wordpress.com.  For those that are nonmedical that are reading this sob stands for short of breath.  Basically lately that’s how I live…..seeing double and sob along with some other symptoms.  I have been for several months and am awaiting an appointment for a test that will hopefully shed some light on this.  It’s called an EMG and if you’d like more info on it check out this link:  http://www.teleemg.com/new/patient_toc.htm  I went to my neuro that I see for my migraines complaining of the double vision and droopy eyelid and this is what he ordered.  He believes that I may have myasthenia gravis.  Not a great one to have but at least there have been some great advances lately.  It has been weighing heavy on my heart lately though.  And my eyes are especially bothering me tonite so I’m a bit more feeling down about it all than usual.  I’m trying not to worry until I ACTUALLY have the diagnosis but with all the myraid of symptoms I have it really heavily points the finger in that direction.  Hence, this blog and the need to just jot some stuff down.  I figure this one will be the one I will use to update on myself.

In the morning I go for my 3 month routine follow-up for my Grave’s disease.  Another autoimmune disease that I have (myasthenia is autoimmune too).  I have had it since the birth of my twins.  It’s funny though as autoimmune diseases usually run in families and I’m the first on either side in mine to have anything autoimmune.  It’s pretty stable currently though and I don’t yet require any meds for it so I’m sure not complaining too much about that one!! 

My appt for the EMG isn’t until Aug 19 and I won’t get the results until who knows when after it so it will be awhile yet before I know anything but that’s my story…………at least for now.

BTW…….this is me……..