Why can't anyone help me?

[amyc34]

I will try to make this as brief as possible.  Several years ago during a visit with my doc for a cough or something my doc noticed my thyroid gland was slightly enlarged and referred me to an endo.  The endo ran blood tests which came back normal and siad I could have Hashimoto's and he'd check me every year.  I went back a year later, bloodwork was fine, doc sisn't seem too concerned and I just kind of let it go...

Jump ahead to 2006.  I was very stressed out, planning a huge wedding and started losing weight somewhat quickly and my hair was shedding more than normal.  I attributed this to stress and not eating well.  I became pregnant on my honeymoon and had a pretty normal pregnancy, ate healthy, only gained 23 pounds and gave birth to a healthy baby girl in May 2007.

Right after having my baby I felt like ****.  I was weak, muscles ached, short of breath, not sleeping well, hot all the time, etc.  I went to my doc who sent me to the endo and I was tested for hyperthyroidism.  Sure enough I was hyper.  This went on for about 4 months and the endo was trying to get me to have RAI and I didn't want it.  He thought I had Grave's.  Then when he tested my blood later everything was in normal range. So, he rulked it as Postpartum Thyroiditis. Then, 2 months later I found out I was hypo (shocked cuz I felt ok) and was put on Synthroid 50 mcg.  That made me feel hyper again and was cut to 25 mcg.  I still feel crummy and have started becoming short of breath again, weak and having frequent stomach cramping and bowel movements (sorry) and my hair is thinning again (not that it ever really stopped).  

My doc checked my blood 3 weeks ago and it was in normal range on the 25 mcg Synthroid.  So I am confused and he won't check me again for another 3 weeks.  

The worst part of all of this is my eyes.  Ever since this all started (and even during the pregnancy) I have had issues with my eyes of and on.  They hurt.  I feel pressure and pain behind them that is so bad at times it makes me sick to my stomach.  The endo wouldn't do a Grave's antibody test cuz he said my eyes weren't bulging so he didn't think I had Grave's.  I am miserable and don't know what to do.  I notice my eyes hurting mainly when I'm wearing my contacts.  During the pregnancy I couldn't even wear my contacts and thought it was just pregnancy stuff, and an eye doctor couldn't even figure it out.  I need some help and I feel like no one can help me.  I feel crummy every day and just want to feel better.  My baby is 10 months old now and I still feel horrible.

Is this Hashimoto's or Grave's or can you get eye symptoms, etc, from PPT?  Is it possible that the Synthroid is doing this to me now?  Maybe I don't need it anymore?  What can I do about my eyes?  Help!!!

I saw an Opthalmologist a few months ago and shared my whole story and he just shrugged it off and said my eyes look fine and maybe I have the wrong prescription and gave me a new one.  It didn't help.  I am desperate for some relief.
Can anyone help me figure out what is going on?  

[Nurseynurse714]

Hi Amy. You can have eye issues with both hashimoto's and grave's. AR-10 is right: you should have your doc run your thyroid antibodies. Prior to being diagnosed with Hashimoto's, my primary complaint was of pain below both ears and the same exact eye pain that you are complaining of, but with incredible eye dryness as well. It was enough to make me want to gouge my eyes out. I saw 3 different opthalmologists who all told me absolutely nothing wrong despite multiple examinations. I did find that ibuprofen, cool packs to my eyes, and resting my eyes (just lying there with my eyes closed for a half hour or so) did seem to help.

Looking back at the pattern of symptoms, it seems that I was having the eye pain primarily when I was having all of the HYPER symptoms. It could have also been the fact that my thyroid antibodies were very elevated. I wonder if the same is true for you (?)

The eye pain has subsided-- I still get it on occasion maybe a day or two every couple months, but at least it's not for months on end like it was prior to being diagnosed.

Google thyroid eye disease and you'll find much more information. I read somewhere that the receptor sites on the muscles behind the eye are very similar to the receptor sites on the thyroid to which the bad antibodies (or was it antigens?) attach. This is supposedly what causes the muscle pain behind the eyes. Good luck. Hope you're feeling better soon.

[AR-10]

I second the motion on finding a new Endo.

You should have been tested for all 4 or 5 thyroid antibodies the minute you tested hypo, if not sooner.

Sorry you haven't had better treatment.


You've been hyper, and you've been hypo. Some of the symptoms linger for a while after your levels stabilize at a good place for you.

Do you know what your TSH was?

[TriciaS]

I'm sorry you've been having such a hard time.  I too was with an Endo since 2005 who just saw me once a year.  I finally got fed up and switched Endos - much much better, person who listened.  I don't have the same symptoms you described, certainly not the eye pain.  But it might be worth a second opinion from a new Endocrinologist!

Good luck to you!!

Tricia S.
: )