As time goes by...

[mommyjamieof2]

As time goes by I wonder how much better my life could have been aswell as my kids had I not developed this horrible misunderstood disease.  I try and make the best of a bad situation but many days I find it hard to find any motivation or concentration.  They say i am depressed I think I may be starting to believe them but I try and fight that I am depressed because I don't feel good.  Would you not be depressed if you couldn't find the energy to run and play with your kids or making dinner for your family of four feels like making dinner for fourty?  the simplest tasks seem so daunting.  So yes sure I am depressed but your little pill for that has never helped any and believe me I have tried.  Now I am stuck here with nowhere to go because I have no health insurance and not enough money to pay out of pocket to see these great doctors that help me so very much...I feel so tired all of the time and just don't have any ambition in my life.  It's not that I don't want to be a happy bouncy person it's that I really can't be.  Some days just to get out of bed before 10 is just impossible it takes me so long to fall asleep at night and I don't sleep well that I am just truely unrested.  I do feel sad but it's a secondary problem make me feel better and I will show you the happiest person on earth I have no reason to be sad other then this disease.  I thought I was on the right path with the right medicine but with out being able to monitor my levels it makes it very hard to know where I am at.  And I believe there may be other contributing factors that may be contributing to how I feel but once again I have no insurance and no way to figure out my health problems.  I am starting a new job at a elementry school but it's only part time and won't provide me with benefits and we don't qualify for any state assistance but my husbands employer does not offer insurance so that leaves me nowhere to turn previously being denied for private health insurance.  I hate to be such a pittaful person I am only 29 years old but I feel like I am much much older and it's just not fair!  Thanks for listening glad there are other people that can understand.

[mommyjamieof2]

Actually he was never diagnosed either!  Can you believe that?!?  I showed a picture of him to one of the surgeons we visited for the cranioynostosis (if you don't know what that is it's the suture's closing to soon in the skull.  His was induced from to much thyroid hormone)  And he was covered in red splotches/bumps (probably hives) when he was a newborn and they told me not to worry about it they were stork bites.  Looking at pictures now they look nothing like stork bites and they were all over his body.  But they attributed it to newborn skin...But the surgeon took one look at that and how BIG his eyes were and said he was hyperthyroid as a baby also.  And they fully believe that my condition led to his cranio.  Luckily other then being a very fusy baby and nursing problems he didn't suffer any known affects from to much thyroid hormone.  Other than the cranio...And that's a story in itself he was not diagnosed with it until he was almost 3 and at that time the doctor didn't know what it was and how dangerous it is and told us not to worry about that we would have to put him through surgery and we didn't want to do that?  Did we.  Well being as no I didn't want to put my baby through a unneeded surgery I didn't think twice about it.  Looking back at his pictures his cranio was very evident the day he was born!  His suture had closed while in  the womb.  They may have even seen it on the ultrasound but didn't know.  Now he is 8 1/2 and has never had the surgery he should have had as a baby but we didn't fully understand it until the last couple years and at this point it is alot more risky for him to have it and emotional part as well would be really hard on him so we have decided to not do the surgery and hope he does not have any complications from it.  And if he does we will revisit the surgery at that point.  
I asked my OB office why when they saw the result of 0.01 TSH when I was pregnant they didn't do anything.  I asked what they would have done in a situation such as mine and she said you should have been tested again..but oh I don't see you were.  This was at about 5 months into my pregnancy when I switched doctors.  I was also tested at the prior doctor early on and it came back 0.01 they also didn't do anything thinking it was just pregnancy induced and would go back to normal it's self...  So needless to say I have had a few bad experiences with the medical community.  
But knowing that I functioned all those years probably about since I was 13 to 21 having hyper symptoms but feeling normal or what I think is normal.  I had headaches like no other, sweated like crazy I was always embarassed when I was jr high/high school because my shirts were always stained I didn't understand why.  I never slept but I was a teenager that liked to be up at night so..  Then my cycles were always irregular really heavy or non exsistant.  But that was how I functioned and to go hypo it's a whole nother world and I don't like it!  But they see my numbers the slightest hyper and FREAK!  So very frustrating.  
Sorry for the novel guess I needed someone to talk to.  And yes I still have my thyroid.

[danie17075rm]

I just applied for disability.  There is no way I could even think about working.  I did see a natural doc though that claims he can help the antibodies stop attacking everything, which will help you feel better.  I don't know though.  He was against me getting my thyroid out, but I couldn't swallow anymore or take the constant fluctuations from hypo to hyper.  See, I am almost enjoying a little bit of the hypo side of things, since I was hyper for so long.  It feels good to sleep and need sleep!  You still have your thyroid right?

I never knew how bad this disease was until I had it.  It is almost unreal.  It is devastating.  I used to think you just take a pill and feel better, man was I wrong.  It must be horrible your little one was hyperthyroid.  I can't imagine a child having to go through that.  What did they do for him? I had pregnancy induced hypertension and looking back my neck was HUGE.  I had tons of complications during pregnancy and my son was born a month early (but healthy other than a slight virus induced asthma now).  I was on bed rest for 4 months.  I really think I had it then and it was left unnoticed.  It was after I had my son that I started getting extreme heart palps, so the doctors recognized I had something going on.  

I now am anxious all the time and suffer from panic attacks.   I never had this before I went hyper.  Everyone starts to think you are just making things up.  All I can say is don't give up hope, there has to be something.  Maybe you just haven't found the level that is optimal for you personally.  I know a lot of people feel better with numbers in the hyperish range.  I personally felt my best with tsh around 2.  

[mommyjamieof2]

I have had my numbers right before and I can't say I have felt great at any point through this for the last 8 1/2 years.  To be honest I felt better when I was hyper before/during my first pregnancy.  I didn't know I was hyper at the time had less problems at that time than I do now..But my son was born with craniosynostosis and hyperthyroid himself due to mine :(  I found out I was hyper from medical records when we were looking into his craniosynostosis and if we were going to treat it.  Looking back now I can attribute things to it but didn't know i had such a major problem at the time.
Anyways I am skeptical about the get your numbers right and feel better thing.  I guess if I could figure out all the issues at hand then maybe I would feel better when my numbers are good.  But when they are off...I think I could sleep for a month and still wake up tired.  It just really *****!  I have tried multiple to pin point the problem myself but have not been succesful tried magnesium, vit d, adreanal support I was actually on hydrocortizone for a while but never saw any improvments.

I was approved for disability medicaid then we moved out of state...Needless to say I can't get it here.  I have my naturethroid fillable for a year but not sure what to do after that my doctor does not even work in the practice anymore so I can't even try and get him to refil for me.

Hopefully something happens which it may after the first of the year with my husbands job and we will be able to get insurance but that is still so far away for the way I feel now.

[danie17075rm]

Yeah I understand that too.  I am struggling in school right now myself.  I have a week to make up due to surgery and all I want to do is lay down and sleep.  I can't even begin to think and I have TONS of papers and discussion questions to write.  Although, I haven't experienced it yet myself, they say when your levels get right, you'll feel better.  I hope this is true for both of our sakes.  

[mommyjamieof2]

I am really hoping that I can find the strength to keep this job and keep attending school.  I am trying to go for nursing but not sure I will ever make it there.  But I figure if I do I will be able to have more pull in my health care, a job with insurance, and money to take care of my health.  But getting there seems impossible!

[danie17075rm]

I can truly understand what you are going through and my heart goes out to you.  I am 32 with a 6 year old son.  A year ago my thyroid decided to whack out (it was a little hypo before, but I was fine with meds) and go hyper.  My heart raced all day, and I couldn't breathe.  This caused me to not be able to get out of bed.  I couldn't go anywhere, and when I did I would suffer panic attacks.  I was A MESS.  My endo instead of helping me handed me a list of psychologists.  I went to his office crying and I said "I feel like I cannot live my life anymore".  He asked me if I was suicidal.  I had just spent 10 minutes telling him how sick I was.  The reason I could not live my life was because I AM SICK.  I am depressed because I cannot get well!  My major is in mental health, leave that part up to me and you handle the endocrine stuff ERRRR.  It is frustrating.  This disease can truly ruin your life.  I have spent a year almost confined to my bed.  I cannot do anything.  I just had my thyroid out, and I pray this helps, if not, I just do not know anymore.  I wish there was some way that we all could find help.  I'm glad you have your hubby to support you.  I am a single mother so it had made things more difficult.  I live with my mom, and I can't use my degrees because I'm not healthy enough to work.  It can be so overwhelming.  I just want my life back as I know you do too.  I pray you can find some relief and you are able to go get some tests to find out what your levels are.  Good luck, we all do understand what you are going through.