Had I Only Known

Untreated Hashimoto's thyroiditis can cause:

• An enlarged heart
• Heart failure
• Myxedema coma, a loss of consciousness caused by profoundly low thyroid hormone levels
• Mental confusion
• Infertility or miscarriage

I am going to the Endocrinologist tomorrow.  Tonight, my heart is heavy.  I am angry, scared, and maybe a little bit hopeful.  


My TSH levels have come back for years now at the low end of "normal".  Not one of my doctors that I can think of, has ever put one or more of my symptoms together as one diagnosis.  They each, over the years, have simply treated whatever it was that I came into the office complaining about. 


Migraines
Depression
PMS/PMDD
Heavy periods
High Blood Pressure
Weight Gain
Sore/tender joints
Memory Loss


I never mentioned the others.


Fatigue
Chest pain
Easy bruising
Loss of hair
Dry skin
Insomnia


I understand that a doctor would only want to treat those things that the patient presented them with.  However, why did it never, ever click in one of their brains that something else was going on with me? For YEARS and I am talking about 15+ years.  


I went in to see my doc about new blood pressure meds.  Mine weren't really working and since I had stopped nursing Liam, I could look into taking something else that should control my pressures better.  That, and I have this funny lump in my throat that just isn't getting better.  I also mention that my doc in Florida had been keeping an eye on my thryroid levels and that they had always come back borderline. She orders blood tests and I wait for the results.  


I'm scared that I have cancer or something, but when I see the results, my mind is put to ease somewhat.  My white blood count is completely normal.  What isn't is my TSH levels.  I wait almost two weeks waiting for her to notify me of these results.  Nothing. So, I email her and ask about them. She sends me to get a Nuclear Thyroid Scan done.  More nervous waiting.


I go for the scan while the big kids are at camp.  One day, you go in and simply swallow a purple pill, wait four hours and come back for some measurements.  They take forever and you have to be really, really still.  A radiologist doctor comes in, asks all sorts of questions, and says nothing of what he's seen.  The next day, you come back for further measurements.  


Then, another wait.


And wait.


And wait.


TEN DAYS later, I call my primary doc to see what the results were. TEN DAYS. This is beyond unacceptable.  She says that my results are consistent with something called "Hashimoto's Thyroiditis" and refers me to the endocrinologist.  I can call in two business days to make an appointment, which of course, is over the weekend so I end up waiting....


1 day


2 days


3 days


4 days


I call to make the appointment only to be told that the referral has been sent back to the doc.  Email her office again and wait.  This time, she actually answers her email within a few hours.  The endocrinologist has looked at the results and unless I am having symptoms, I do not have to be seen.


No one has ever asked me if I was having symptoms.


I email her back with some of the things that I have been feeling.  I don't know if they are related to this, but she needs to know that I am not feeling right (and haven't been for years now).  Finally, the right referral gets to the right department and I finally get to be seen tomorrow.


Now, Google is a wonderful thing.  It is also the root of all evil.  Want to know how bad things can get with whatever diagnosis you're looking at?  Google it and you won't sleep for days. So, this is how I happen upon The Mayo Clinic's description of Hashimoto's and it's complications as well:


Birth defects. Babies born to women with untreated hypothyroidism due to Hashimoto's disease may have a higher risk of birth defects than do babies born to healthy mothers. Doctors have long known that these children are more prone to intellectual and developmental problems. There may be a link between hypothyroid pregnancies and birth defects, such as cleft palate. A connection also exists between hypothyroid pregnancies and heart, brain and kidney problems in infants. If you're planning to get pregnant or if you're in early pregnancy, be sure to have your thyroid level checked.


After I lost John, my doc ran all sorts of blood tests.  I remember that I had gone in before school and had 21 vials of blood drawn.  My thyroid levels were one of the things included.  I remember because I've been memorizing that number for a number of years since Dr. Phil told us to when he was doing that weight loss program on his show.  Again, the numbers came back at the low end of normal.


I asked her if I lost John because of my thyroid.  


She said, "No".


I had never pushed further with any of the doctors because I thought that they knew best.  I trusted that they read their charts.  I trusted that since I was only seeing one doc for just about the entire time that I lived in Florida, that he would know my case file and know what was best for me.  If he had just taken the next step and asked me more about how I was feeling... if he had just taken the next step and put all of these symptoms he was seeing into one context.... he would have seen that he should have sent me to the Endocrinologist.


The Endocrinologist that would have put all of this together before, years before I lost John.  And that doc would have put me on meds that would have evened all of this out.  That losing John wouldn't have been a possibility because we were on top of it.  That, when I see pictures of our friends' baby who was due the same time as he was, I wouldn't wish he was here because he would have been.


My poor baby.  I am so sorry for what I didn't know.  I should have trusted my gut instinct.  I hate being contrary, especially with people in authority roles, but I should have stuck up for myself.  I should have stuck up for you.  


I am so sorry.