I have wanted to share and put in writing my health story not just as a memory for myself but perhaps it will help others as well. This may be a little lengthy but bear with me as this is a very complex autoimmune disease that branches in all kinds of directions❤
I have Hashimotos Hypothyroidism, this happens when your body doesn’t produce enough thyroid hormone on its own. Without enough thyroid hormone your metabolism slows down as well as your energy level. Five years ago I was diagnosed, I was surprised, I was confused, and scared, yet thankful. I had an answer to the way I was feeling but upset that the answer to “fix” this is that I would be taking a pill not just for a week but for the rest of my life to feel better. I never wanted to depend on medication and I never knew someone my age could have this. I knew both of my grandmothers had thyroid issues and assumed maybe it could be something I may deal with down the road in the far far future, but there I was at 29.
In 2013 I went in for checkup which I had ignored to do for 3 and half years after having my second child. I just hadn’t been feeling good and was constantly exhausted no matter how much sleep I got. I found myself needing to go back to sleep shortly after waking up, needing a nap in the afternoon and then getting to bed early every day. I would recommend not waiting to go to the doctors, I have always been very bad at going to the doctor but this new diagnosis really made me regret waiting so long. I had been tired for a very long time, I just chalked it up to being a mom and having two kids, that this is my new reality, the tired and anxious mom. The doctor said yes its normal to be tired from having kids but lets do some blood work and see if anything else is going on. When they called me back to come in and discuss my blood work I was really worried and didn’t know what it could be. Not much else was discussed about what exactly hypothyroidism was at the time other than the explanation to it was why I was so tired, and that it regulates your metabolism and energy level and since my thyroid was sluggish so was I.
When I got home I wanted to do some research on my own because I wasn’t comfortable with the fact that a pill for the rest of my life was the only thing I could do. When I started diving into all that hypothyroidism is it connected A LOT of dots and things I didn’t realize I was experiencing but had been and just thought it was who I am. I was freezing cold all the time, I would lay in the sun from the window and just absorb the warmth from the sun. I was cold when nobody should really be cold so that should of been my first sign if I would of known what it was linked to. Then also my eyebrows had been noticeably thinner, my hair and skin always dry and my hair had been thinning on the top more and more. My memory basically erasing I wouldn’t remember anything and then when I tried to write stuff down I would forget where I put the paper that had what I was suppose to remember. I would forget things I said, others said, memories, and to this day there are things that are just completely wiped from my memory. I also didn’t realize I had symptoms of being depressed and didn’t recognize that getting upset over basically nothing some nights and crying for hours when I was trying to sleep wasn’t normal. I would constantly have a stomach ache from anxiety even though I really had no reason to be so anxious. I also started experiencing what I believe would be like vertigo where my equilibrium was feeling off like I had ear infection but didn’t. I had joint pains and lower back pains. I wasn’t feeling like myself, the girl that use to be so cheerful and happy to more mundane and blah feeling not really up to things like I had been. I’m not sure if many of my friends through that time noticed but I look back and see how I very well could have created distance without it being on purpose but because I just wasn’t feeling great, I was exhausted all the time. I would always tell everyone I was good just tired, I really did not understand how I felt. Some days I had more energy than others and some days I was exhausted, I just thought this was pretty normal.
Can you see where I waited way to long to go to the doctors? I avoid it and never think I need to go, plus my hate for blood work and the request to have it done is an experience in itself so meh I never want to go, but I am thankful I did. There was an answer to the way I was feeling and the doctor said my energy would come back around. I was skeptical but hopeful!
Many people relate hypothyroid most to being overweight which was the one thing I wasn’t experiencing, but to my understanding you can also loose weight due to the other symptoms going on. I really had chalked it up to hormones being out of whack from having the kids but understanding now that should clear up earlier then years later. That the stress your body goes through, and stress in life in general plus all the hormonal fluctuations can result to the thyroid gland not working well. I have read that many people have been treated only for depression or anxiety when they discuss with doctors their symptoms and then years later may come to realize it has been their thyroid. I am thankful my doctor knew to test for the thyroid right away and not one thing after another since they can be so closely related.
So now that I had a diagnosis and a medication to help my thyroid function I should be getting better right? That’s what I thought but a few years later I started becoming more and more allergic to random foods that I couldn’t pin point, breaking out in hives under my neck. This led me to an allergist for testing, no foods came back as an allergy, no allergies other then grass. So what was causing the hives?? This allergist did another test and led to the conclusion that I have what they call hashimotos hypothyroid where basically explained my body is attacking the thyroid gland. My question is why but the doctors say it’s just what’s happening. So I further dive into more of my own research and come upon that it is best to be gluten free to help relieve this issue. But I don’t truly follow this path until about 2 years later because I just fully didn’t understand and it was really hard to maintain. Where do I stand with that now you may wonder? Well gluten free/ dairy free is my lifestyle now because I have realized just how much better I feel most of the time.
A little about the medical numbers that are looked at and to my understanding is that a standard thyroid test when they look at whats known as the TSH in its “normal” range would be somewhere between 0.5-4.50 and going back to the beginning of all this my number came back at 14. The doctor stated I need to start taking medicine right away to get it to level out, which is than a series of how much dosage of said medicine will get you to level out and a series of blood work after being on a medication for a few months then the dosage goes up or down and repeat until you find your balance. I wanted to start low since I had to start something and ended up balancing at the 3rd dosage we tried. But I was still determined I would get off this medication at some point and did more research, changed my diet up, ate more veggies, drank more green juices, ditched dairy and gluten, and I began to feel somewhat better, energy level was coming back around and I was no longer breaking out in hives. I no longer needed morning and afternoon naps and could go to bed at a slightly later time, things were looking good.
Now that I have discussed a little of the symptoms and my experience thus far I will dive into current year, which is right at the 5 year mark since being diagnosed. I learned that this pill isn’t a cure all and I have been working and managing emotions and hormone fluctuations over the years, I have learned that I still get really tired some days, I’m not entirely who I use to be but I try, every day I try and some days take a whole lot more effort and I get frustrated with myself but have to remember that my body is not perfect. But also 5 years in I felt like okay maybe I have made enough changes that could there be a chance I could stop the medicine? How would I know if I don’t try, maybe lowering the dosage and see if that helps little by little maybe? I wanted to see if where I had worked to be at over the years has made any change on my body and thyroid and if at all possible I could stop the medicine. I am stubborn and determined and so when the specialist doctor I went to said yes and gave me the clear go ahead you can stop the medicine tomorrow. I was surprised, happy, and relieved. I can just stop it just like that? I don’t have to lower down? He said no your body either will need it or it won’t so come back in 6-8 weeks for blood work. I was like cool this is going to be great, no more medicine I am done with it!
A week off the medicine and I thought yeah I’m good, felt fine, great even. A few more weeks went by still felt good really started to be believe I will be just fine off this medicine, I knew it! Then about 5 weeks in one day I felt like I hit a brick wall, exhaustion set in like no other, I thought maybe I had the flu? no fever no other symptoms, wasn’t even thinking it was from the medication now completely out of my system, which hadn’t even crossed my mind. The next week went on my face got really puffy and swollen it felt like a sinus infection or something going on. I’m now into week 6 and I just knew I couldn’t wait any longer so I went to get my blood work done since I felt awful I needed to see where my thyroid levels where at. 4 days after the blood work I call the doctors office basically holding back tears as I try to schedule an appointment as soon as possible because I just didn’t feel good. I wasn’t sure what was wrong but now the swelling in my face is really bad I don’t recognize myself, my back hurt, my whole body was swelling it seemed, I felt like my heart rate had slowed down, I’d gained like 15 to 20 pounds over the week. I get an appointment in with my primary care physician and she asks what brings me in today and I say I just don’t feel good, she looks at me and says I can clearly see that. We go over the fact that I had stopped the thyroid medication with an okay by a doctor and she asks if I had any recent blood work done. As she pulls up my medical information there it is pretty much as she is asking me, she says no wonder you don’t feel good, my thyroid number was way too low at 222. Friends 222 is awful I was starting to experience what is called Myxedema which means basically my body was starting to shut down, my metabolism was done not working at all….ugh…..Yet another answer and another good yet late timing of a doctors appointment, any longer and the hospital it could have been I was in bad shape. So that night the doctor tells me you need to start your medication back up right away, tonight even, and sent me on my way. I was to follow up with the specialist I had seen. It took a couple weeks to feel “normal” again.
When I went for a follow up after a couple weeks back on medication the specialist which I should mention is an Endocrinologist does not have much to say other than well know we know your body needs the medication and to come back in a few months to see where I’m at then….not really what I want to hear and I learned it in a very difficult way. Now here I am 5 years later starting back at ground zero and worse off then when I received the original diagnosis. I could be upset with the doctor, let’s be honest I am upset with the doctor for letting me stop the medication. But I am also upset with myself, it is what I wanted. I think the safer route would have been lowering the dosage and seeing if it fluctuated my thyroid levels and then have gone from there. I really learned that I need to have a voice in the doctors office but it is still hard for me because I feel I should be able to trust what they tell me. At the same time my instinct has never really let me down, I need to follow it more and speak up for myself. One of those easier said then done things though for me….but I am working on it.
This autoimmune condition is very difficult to treat and understand, here I am and others may be thinking I am just being lazy, emotional and anxious. The fact is my body isn’t working as great as it should be, it is really frustrating and kind of consuming in a way. I think I still have a hard time understanding that this is just going to be an ongoing process even though I don’t want it to be it just is what it is and in the meantime I need to just try to live my best life. I know settling back into a routine of the medication and vitamins I need overtime will do its job and I’ll be back to feeling my “normal” again, I’ve been there before so I know it will happen, it just takes time.
I rest when I need and am getting slightly better at making doctors appointments for myself. I am in charge of my health and if I feel off I am learning to listen and get into the doctors office, that is what they are here for. After all this medication I thought I could do with out proved me wrong and I learned just how fragile life can be first hand, it really gave me quite a scare and if this one pill can get me back on the road to healthy I will let it, no longer being stubborn and determined to be healthy without it but that I truly do need it. I’m currently doing much better then I was 6 months ago, and 6 months from now I hope to be doing even better. It’s been an off and on struggle over the years, I still have anxiety issues, emotional ups and downs but overall I’m coming back around. I’ve learned that too much stress which may not be a lot to others is too much for me and take on much less these days, it’s been hard not doing it all but it’s been what’s best. Working out has always helped manage my stress and helps me stay physically fit as well as mentally, so it has become a much needed part of my daily routine.
I have checked out different avenues and even saw a naturopath doctor when I needed some more insight after what I had been through going off the medication to back on. It’s been kind of a trial and error process throughout, not really a one thing fix all, this autoimmune disease can rear its head so to speak in many different ways. I thankfully have a supportive husband who advocates for me, reminds me I need to speak up for myself and is there for me when I’m feeling down, even when I’m not at my best he loves me just the same and that makes a huge difference.
So if any of this sounds familiar to your own life and you’ve been wondering what is going on don’t hesitate much longer its worth it to get checked out by a doctor. I also want to bring awareness to those “invisible” diseases where people may look just fine on the outside but you never know what they could be or are going through. Kindness and a smile goes a long way. Health starts with you and as adults I know we let ourselves slip in that area too often with everything else going on, but listen to your body, take time to care for yourself and seek help when you need it.
***Hashimotos Hypothyroid is an autoimmune condition. Share with your friends or family if maybe you see any of these, or feel any of these symptoms.
***You can do a quick google search to find all the symptoms of hypothyroidism for more exact information. 😎
***Take this as a reminder to get in for your yearly physical, see a doctor when things don’t feel right, listen to your body and care for it, its the only one we get!
***Please let me know if you have any questions, I’d be happy to hear from you!💖