Putting The Pieces Together
Surviving Undiagnosed Congenital Hypothyroidism
Hello and Welcome! My name is Kelley and I thank you for visiting my blog. It's my 1st ever so I'm all sorts of excited and nervous. 65Bubbles is about the journey of my Undiagnosed Congenital Hypothyroidism (UCH). If I can help even 1 person from going through what I have, it will be well worth my struggles with the disease itself. I apologize in advance for any glitches with the technology.....it's not my strong point!!! Regardless, my goal is to spread awareness of this chronic illness, whether you suffer from it or not. We all need to advocate for ourselves because doctors don't and won't.
My family thinks I'm just dumb and lazy.....and always creating drama. How many times have I heard the words, "Why are you like a child?".... "Why can't you do anything right?" .....Well....way too often!!!! So, it is my hope that creating this blog is doing something right for myself, and maybe others who are also affected from Undiagnosed Congenital Hypothyroidism, or one of the many other chronic illnesses. At this point in my life, it feels like CH is the only "Till death do us part" commitment I'll ever have.
I will be posting thoughts of the day, according to what goes on in my mind, or out and about in the world around me. There are occasions where I may say out loud what others may be thinking but not have the courage to say, or maybe know better, lol. I look forward to sharing those.
Oh, I'm also doing a series of videos on YouTube. If you can, please view and share them. I really hope you will. I think they will be helpful in bringing attention to CH
To those who stuck by me through my darkest days and believed in me when I didn't believe in myself, I love you all so much and am incredibly grateful!!!
Thank you all.
Congenital Hypothyroidism is when a newborn is born without a properly functioning thyroid or no thyroid at all. The thyroid gland is a butterfly-shaped organ that has control of almost every part of your body by producing two key hormones called T3 and T4. These two hormones are critical in order to have both healthy physical growth and brain development.
Congenital Hypothyroidism can be a result of it never developing properly or being in the wrong place- Ectopic. When the thyroid gland is ectopic it will never work and treatment will be lifelong. If the babies levels are low they will be treated and re-tested every few weeks to be closely monitored. Sometimes those babies thyroids can catch up as the Ectopic thyroid never will. With newborn screening that started in the 70's, there is less chance of a baby suffering the long-term effects of Hypothyroidism because it is caught within days of birth. The earlier the treatment starts the better long-term prognosis. Most with proper treatment and monitoring go on to live perfectly normal lives.
The thyroid gland can be your best friend or worst enemy. This one butterfly-shaped gland which should be in the front of your neck is in charge of height, weight, hair, skin, nails, digestive system, social & emotional development, cognitive development and so many other key factors.
When the Hypothyroidism is not caught early the long-term effects can be many and lifelong. The consequences can be anything from poor vision, constipation, intellectually disabled, cardiac issues, poor muscle control, depression, infertility and the list goes on.
Hypothyroidism affects far more women than men and there are millions that suffer with it every day. God decided that he would choose me to be "blessed" (sarcasm) with the disease.
of Congenital Hypothyroidism, mine is ectopic. The effects were the only thing I knew. I was not diagnosed until I was 8. There was no testing when I was born in the mid-1960's other than in California. There is no education provided by doctors so we need to advocate and spread awareness. With the technology, we have now there are still too many suffering needlessly due to the lack of education. With 50 years of suffering it wasn't until I completely crashed that I found Pinterest. Getting the information that medical professionals never provided I finally found on social media. Thank you for helping me help myself
What is Congenital Hypothyroidism?
There is always a Monday morning quarterback in life and yes, hindsight is 20/20. I fully understand that you can't turn back time, I also understand that medicine and technology have come a long way in 51 years. What if's or "if only" don't matter with me or anything else. All of those things are correct but there is still the other side, it's my life! For all of those that say "just get over it and move on" have no idea. The impact of living your whole 1st 50 years of your life thinking what is wrong with me? Why can't I be picked to play kickball, why can't I keep up with the others?
Yes, I will admit at times I am angry, I am sad. It's not that I'm angry at anyone in particular because Congenital Hypothyroidism isn't anyone's fault. The thing that upsets me is the labels that were put on me and that people that you would think would support you still think CH and the effects are BS.
As I heal and don't always have FOG brain there are so many flashing lights of childhood memories that make sense to me now. Having the resources today to learn about Undiagnosed Congenital Hypothyroidism has shed so much light on me, it can be overwhelming at times. There are occasions I don't know if I'm crying happy or sad tears. It's not easy being slow but knowing there has been a reason for it is semi a relief.
I'd like to post a few of my memories that now make sense to me
*Earliest memory at 3 in a little yellow dress just screaming crying at the fireworks because of the noise. My dad recently confirmed my memory with the word..inconsolable. The thing is at 51 nothing has changed as far as my fear and almost pain from the noise. Fire trucks, firecrackers, car horns etc
*glasses in 1st grade. They were horrible as well as getting picked on.
*never being able to get up the hill at school without help from big sis.
**1st hemorrhoid in 2nd grade, I would guess from chronic constipation. I had the babysitter and her mom looking at my butt. Something you don't forget.
*3rd grade sitting at the 3rd-grade girls tree crying because no one wanted to play with the fat girl who couldn't jump rope very well (I stunk)
*crying my eyes out in 3rd grade because I couldn't understand the exact way to water paint that damn squirrel. No wonder I want to run them over as an adult, haha
*Special Ed gym class because the school was concerned about my weight and lack of coordination. My mother never knew that until about a year or so ago.
*My inability to retain enough information to carry out school lessons and other tasks quickly enough to keep up with everyone else. This is still something that I deal with.
Those are just to mention a small sample.
Now knowing what's wrong and understanding myself better has been a big help. Up until
maybe a year or so ago if I was in a situation that I didn't understand or couldn't do I'd get all
uptight which would only make things worse or I'd avoid it like the plague. It's taken me a long time to learn to say I don't understand and ask for help.
The photo was taken at 8 being the height of
a 4-year-old, overweight and having high blood pressure
Higher Risk for heart disease
Thin brittle hair and nails
Higher risk of Autism
Slower Response Time
Social and Emotional Delays
Semi Hoarse Voice
Possible vision issues
Lower Average Body Temp
The above list is just some of the long-term effects of Congenital Hypothyroidism that may present itself. Now, when you're told just take your pill and your fine but you have all of these issues going on, it's not okay. I wasn't "FINE"
"Yes, as long as you take your pill nothings wrong", I was young so I believed it. Going through life feeling like crap all the time thinking everyone feels like me?!!!! I remember at maybe 10 thinking: Wow, God should have made us different, nobody ever feels good. Well, God did do it right but he made me "special" is what I finally realized.
I was chosen to be the "special one" oh lucky me. When you are a kid that is the last thing you want to be!!!
Long-term effects of Congenital Hypothyroidism (un-diagnosed)
*Please note* When I make lists or write of my experiences I'm not speaking for everyone. They are physical and emotional experiences that can be characteristics. I'm not a doctor and we're all "special" in our own ways
Some of The "Forbidden" Foods and Other Taboos
They say "You can't teach an old dog new tricks", but can you? We are in an ever-changing world and that dog needs to stay with the times and learn several new tricks. If he chooses not to learn to fetch the stick and bring it back it could keep him in the freezing cold dog house for a long time! Yes, I'm the old dog! So much has changed in technology, science, and medicine as well as peoples overall awareness of their own health and staying healthy.
Over the past 18 months, I have had to learn several new tricks to be able to come in out of the cold to try to get healthy. The world of technology has helped me substantially. Having the knowledge now of how and when to take my medications has helped so much in finding my way out of the cold. It's also been key in learning many of the taboos that someone with Hypothyroidism should avoid. Keeping in mind I never had any of these tools until very recently, oh, if only, lol.
Having Congenital Hypothyroidism many different types of food should be avoided. The reason to avoid these foods is that they interfere with Thyroid medications. Many of them will stop the daily treatment from fully doing its job. Because our digestive system is slower breaking down many foods takes much longer.
Some of the items I will list are "Taboo" because our bodies don't break them down or know how to handle them.
Nuts and Beans, Soy, Starchy foods, Peaches, Pears, and Strawberries. Junk Food (ouch). There are others to avoid such as Goitrogenic foods i.e. Taboo Foods - Brussel Sprouts, Broccoli, Spinach and kale (yuck) Gluten can be another trigger and starchy foods.
Taboo Items- Fluoride, Mercury, Alcohol, Tobacco
*** Please note everyone and their Hypothyroidism are different. What may work for me may not for someone else.
A FULL Thyroid Screening Includes
TSH- Yes, but not enough
Total T3- any active thyroid hormone
FT4--free thyroxine-interaction w other medications
Vitamin D- levels are often low with
Reverse T3- body cannot use it
In the event, Hashimoto's or Graves Disease is present or suspected they may have additional types of blood work that should also be demanded
Knowledge is Power
What I Know Now I Didn't Know Then
*You have to have a sense of humor
I went the first 8 years of my life UN-DIAGNOSED
*So, NO I'm not just stupid
*Ignoring me will not make it go away
*Yes, I know I need dental work- I was given Flouride EVERYDAY growing up! Maybe I should have used bootleg as a chaser, lol
*Just because I took my meds every day and got my blood done every year it doesn't help if you're on the wrong meds.
* No, the doctors don't just do the full thyroid screening. Demand the full screening
*I had no knowledge so I trusted the dr., silly me
* I'm not the bad person I was lead to believe I was.
*I now know I'm strong, loving, semi-talented, *I'm a SURVIVOR and I WILL only get better!
Everything Changes Yet Everything Stays The Same
Wow, time flies! It's hard to believe I started this blog about my Congenital Hypothyroidism almost 2 years ago. As I read through many of my previous posts
I see how angry and sad I really was. Having had no idea my whole life how physically and emotionally I was messed up is scary.
Although I never thought I'd say this I'm almost grateful I had my whole thyroid crash and breakdown. To think if I hadn't broken I would have lived even longer being a walking disaster. Finally being on the right meds and taking them differently I almost feel like a new person. Okay, I admit there are still some things that I need to work on but I don't go through my day feeling like I'm crawling out from under a dumpster. For that, I'm very thankful.
My brain fog isn't every day anymore and I can get out of bed now. Instead of sleeping through my whole day I actually do things and rarely ever nap either. I don't go through every day in pain counting the minutes to go to bed. Thanks to the benefits of medication
when I do start to burn out mid-afternoon I look forward to my 2:30 pill. One of my newer prescriptions that I take twice a day is Liothyronine. Never did I think I'd be one of those people who walked around with my little pill box in my purse. My cell phone has an alarm that goes off at 2:30 every day to remind me it's time to take the 2nd Liothyronine. Honestly, it's amazing how much difference that one tiny little second pill makes in my day. Emotionally my days are brighter for the most part. It's nice not feeling like I'm 95
My "crash" did result in some serious financial issues which do add stress that's not good. I've learned how much money was being wasted on things I could either do without or substitute for a less expensive brand. While it's not big money selling things that I've hung onto for some reason helps a little. With some random items I had around my house I started making wreaths that I was hoping to be able to sell. Wasn't I surprised when I posted one of my creations now and then people actually wanted to buy them? Very flattering. I've come to realize that I'm not a bad person or the horrible things that I was lead to believe I was. I've learned that family isn't always blood. It's the people that are there by your side in the good and bad. They're the people in your life that don't judge or talk behind your back. A real family doesn't alienate someone because they don't "fit in" the with your idea of how they should be. I've discovered I'm pretty creative with a camera and my wreaths. Very willing to admit mastering technology is something that I'm very much at a disadvantage. My goal is to be able to sell my photos and wreaths with an extension on this website. Mostly I know I'm stronger and braver than I ever thought. Never did I think I could or would have to learn to live a day to day life without a few certain people but I had to. As devastating as that was it made me stronger and also reminded me that I'm a loyal person and have always been. In my opinion, a person who shows loyalty, bravery, sincerity and the refusal to quit is a person I'd want to see succeed.
I'd like to give credit to those who I may have re-used their work, Thank you for being a part of my recovery and growth. I'm so grateful
I'm Not Crazy!!!
Yippie....I'm not crazy after all, well maybe a little bit. A fun kind of crazy I'll say., haha. The internet has helped me realize that the signs and symptoms of CH were not just in my head. I wasn't "just lazy and dramatic".
Up to this point, I thought I was the only adult who cannot handle noises. Loud sudden noises or even blaring music, televisions on high. The worst is fireworks, fire trucks, sirens, whistles and anything of that nature. These noises actually hurt! For so many years I was laughed at and picked on because I would hide or block my ears. Okay hiding your head as an adult to block out noise isn't normal.
While I've been working on my website I've also been trying to do some YouTube videos to spread awareness. It was so amazing to find another woman with CH who was diagnosed young that deals with the same fear and anxiety with noise as I do. When she mentioned the physical pain I was sad for her but in a selfish way, it was such a relief.
My next mission is to figure out why we experience what we do other than being "babies". I'll provide an answer when I get it.
Sometimes in life, it can be just one small thing that can make a big difference. The day I found The Inevitables of Chronic Illness was one of those days for me. It was a great day!
Prior to reading this, I did feel like I was completely crazy and alone. I felt like I would just always be some weird outsider looking in. This post was me to a tee. It was like looking in a mirror.
Finding this and reading it was great! So many bells and whistles went off and I realized I wasn't all alone. Other people have felt like I did. Please understand I wasn't happy others were miserable, just that I didn't have to hide anymore.
Reading this gave me hope. Realizing that I wasn't alone and that even one other person could understand was wonderful. It made me realize that even though I had felt all this pain physically and emotionally it wasn't just all in my head.
This post was a new beginning for me. I may be different but in a unique cool sort of way.
So, again to whoever wrote this I sincerely THANK YOU
My thyroid is ectopic
Subtle Signs of Congenital Hypothyroidism in Infancy
Significantly overdue birth
Higher Birth Weight
Lack of Normal Muscle Control
I've only listed a few of the subtle signs of CH in early infancy because they are almost becoming a thing of the past. Thyroid function tests are now part of the standardized tests done shortly after birth