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.

I have a diagnosis finally!

I had a follow up appointment with my endocrinologist today for my hyperthyroidism.  We were discussing how my symptoms had come back.  The double vision, shortness of breath with any exertion, muscle weakness, etc.  See this post for more on that.  Luckily it’s not nearly as bad as it was when I started this blog. 

During the appointment we talked about that I’m not anemic but that after I gave a unit of blood when my daughter had surgery back in July I never seemed to make it back.  I actually jokingly told her that!!  I had remembered that she had told me at my visit several weeks later that my counts had dropped a little and I had told her it was no big deal as I had given blood.  You should make that back in 6 weeks though and I never did.  At that point she asked if we had ever checked my iron levels. 

She thumbed thru some pages in the labs section of my chart and found that she had checked them.  Then she got quiet.  I knew it wouldn’t be good from there.  And it wasn’t………for two reasons:  1) they were checked about 6 months prior and 2) they were not good results.  Now let’s talk about each of those.

She was quite embarassed that these bad results had been sitting in my chart for so long.  She went on to try and quickly explain how it could happen etc.  She knew all that I had been thru with the massive work up and how horrible I had been feeling etc.  AND that I had never gotten an answer.  That doctor after doctor had basically told me that they could find nothing wrong.  You can imagine how she thought I would be feeling.  However, I am a nurse….I work in the medical field and understand how papers, results, labs, etc get misfiled everyday.  I totally understood.  And you also have to understand that not only is she my doctor but she is MY FRIEND.  We usually spend most of my appointments talking about our families or work.  Then in the last 5 minutes we cram the entire appointment in!!  I wouldn’t change this for the world.  She gives me the best care of any of my doctors.  For those of you still wondering HOW it happened it went like this………my thyroid labs come back the same day whereas the iron studies take longer.  All the labs sit in a pile awaiting her signature to be filed in my chart.  She signs them as they come in.  What most likely happened is that she signed the thyroid ones and then the iron ones came in.  Someone saw her signature and just filed them.  She never even saw the iron ones.  Happens in doctor’s offices everyday……….moral of the story……no news isn’t always good news!!! 

As to #2…the results:  My ferritin (the most accurate for gauging your iron stores) was 7.  That is quite low, severely low actually.  And it could account for all my symptoms that I’ve mentioned on this blog before.  All the symptoms that they were blaming on me possibly having myasthenia gravis.  Imagine that.  Something as simple as iron deficiency and I had the million dollar work up for myasthenia gravis!  My thyroid doc wantes me treated with iron right away but knows it isn’t her speciality she forwarded all this to my primary doctor.  I’m waiting on word from them as to what I do next.  I’m hoping some iron is in my future!!

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!

Thyroid update and life in general

Had my appointment earlier today and it went well.  My TSH is up to 0.89 from a low of 0.20 at one point.   Normal by most labs is considered 0.35-5 but my endocrinologist feels that you aren’t in the “normal” catagory until you reach 1.  So I’m almost there!!  She started laughing when I told her that I knew I was getting closer to her goal of that 1 since I can no longer eat whatever I like and not gain weight!! 

She then asks me how my swallowing is going.  Not sure if I mentioned that in the last post but I have been having a bit of trouble swallowing when I’m tired too.  She had done a thyroid ultrasound and ENT consult in the past for the swallowing issues.  So I tell her about ALL my symptoms of late.  They have all started since I last saw her 3 months ago.  She is shocked!  She tells me that she didn’t see that one coming when she asked me about the swallowing and “wow…thanks for dropping that bombshell on me”!!!  I say “hey, no problem!!”

She and I have a great relationship.  We talk about my Grave’s along with life in general.  She has brought her kids to kid parties at my house too.  She’s a great person.

For that reason, she doesn’t do the usual line people give when you tell them you may have a chronic disease.  That line being…….Oh I’m sure you are fine.  Instead, she reminds me that when  you have one autoimmune disease you are at higher risk for another and that thyroid and myasthenia tend to go together.  But then tells me that I’m one of the most optimistic people she knows and how my outlook is so great.  I tell her not to mistake that I’m having a good day for anything and that I have plenty of bad days too!!  She reminds me though of all that i have been through in the last year (DH had a heart ablation, DD just had surgery and has chronic issues, DS has had 2 surgeries for his ears, other DS has his yearly cardiology appt coming up) and how happy I am.  

Some days it’s all a cover up though.  You know?  How am I supposed to be down in the dumps all the time when I have 3 kids and a husband and a full time job???  It’s just not possible.  Plus, I told her that being sad about it all isn’t going to change it.  If I have MG then I will start treatment and deal with it and move on.  If I don’t then praise the Lord and I guess I need to see a psychiatrist for all these wierd symptoms that I DO have!!!  And, if so, I’ll deal with that.  But, one day at a time, trust in the Lord my savior, and go on. 

What else is there to do?

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……..