I know this piece won’t interest everyone, but I wanted to get my story out there. If I can help one person be in charge of their health, I will feel blessed.
I was diagnosed with Hypothyroidism when I was 12. At 14, it changed to Hyperthyroidism and I was also diagnosed with Graves Disease. At 18, I had a subtotal thyroidectomy and I have been living with hypothyroidism ever since.
10 years after my surgery, I am finally paying attention to my body and it isn’t happy.
I don’t know how I managed to survive so long without treatment. I was put on meds shortly after my surgery, and within a year, I stopped taking them (I have no excuse, just a stupid teenager). I was put on meds again after finding out I was pregnant. At some point after giving birth I stopped taking them again. Now when I say stopped taking them, I mean I would pop a pill maybe twice a month or maybe once every few months. It varied greatly, I HATE taking pills and I have a terrible memory, it’s not a good combination…
In the beginning of last March, I felt like my anxiety was getting really bad. I didn’t want to go anywhere, I had terrible thoughts about every negative thing that was happening or could happen with the simplest of tasks and I just felt constantly on edge. I had a hard time concentrating and I couldn’t help but think I should really see a Dr because I’m sure my thyroid is out of whack.
Late in the month, I had a massive panic attack. It was one of the scariest days of my life. I was just walking into my living and I felt like my heart was racing. I got really cold and started breathing heavy. I had a shooting pain in my jaw and then I started to freak out. (The day before I scratched myself and I was convinced I was either having a heart attack or I was dying of the tetanus, It was also on the side I have my last wisdom tooth). As soon as I was able to calm myself down, I drove straight to my parent’s house (brilliant, right?!?). My husband was out of town for work and I felt like I just needed to calm down. My mom told me to just lay on the couch , then her and my dad played with the kiddos to keep them entertained so I could get some rest. I ended up taking a really good nap and woke up feeling much better (yet still insanely scared because I didn’t fully understand what happened).
I was terrified with what had happened, so I broke down and made an appointment at our local community clinic (we didn’t have health insurance at the time). Guess what? My thyroid was out of whack! My Thyroid Stimulating Hormone (TSH) level was at 19. The normal is .5-5.0. While it was fairly elevated, the Dr said that he had seen worse. He put me on a medication called Levothyroxine (generic Synthroid, which is the most common hypothyroid medication).I started on a fairly high dosage and I went back for a 6-week checkup and my levels had gone down to .063. I was now on the hyperactive side. He said he wanted to keep my dosage the same and see if they would level themselves out. I was feeling ok, and I had gained a few pounds but I felt like my anxiety was better and overall I had a bit more pep in my step.
Well, within a month, I called the clinic back and said I think I need a dose change. I was feeling like the inside of my body was trying to move faster than the outside, my heart was racing but my body was so slow. I also felt like I was having heart palpitations and I just felt on edge, I had gained a few more pounds. They did another test and my levels were now at .293. So they had improved a bit, but I was sill on the hyperactive side and he deiced to lower my dosage and hopefully relieve some of my symptoms.
With this medication, they usually have you take it for 6 weeks and then get your blood tests redone. Within 4 weeks I called back. The clinic I was going to, was set to close at the end of December. It was only a week before that date and I felt awful. By now, I had gained 40 lbs in total. My anxiety was worse than before. My skin was dry and I was constantly tired. My hair seemed to be falling out, but the fatigue and brain fog were the worst symptoms of all. They took my blood and my level was ……..31!!!!!!!
I took my meds every single day, but my levels were now worse then when I wasn’t taking any pills at all!! My Dr was dumbfounded. He had no reason or excuse as to how this could have happened.He suggested I take my pills to the pharmacy and make sure they gave me the right ones. I did and they double checked, they were the same. I talked to the pharmacists about what was going on, and she was also shocked. No one had any reason why this had happened. I even went online to one of those “ask a doctor” websites and the response I got was “That is highly unlikely to ever happen.” (no shit….)
With the clinic closing, there was nothing else he could do for me. His own practice was based 3 hours away, and he came up to volunteer at this clinic 2 days a month. We still didn’t have health insurance so I was basically left to figure it out myself.
I was feeling very defeated after this. I took my meds, only to have them make me worse. So, me being me, decided I would just stop taking them again. That lasted all of 3 months. I probably took my meds 5 times throughout then. But, I just couldn’t keep it up. I knew deep down I needed to take care of myself. I needed to be healthy. Summer is coming and I can’t have another summer like last, I was so inactive and it really took a toll on my kids, we barely went to the park or the beach. I felt like a terrible parent because I was so exhausted to do anything. I felt like I was failing. My husband works 60+ hours a week in the summer, so its all on me. I refuse to feel like that ever again, especially because I am the one who is in control of my health.
2 weeks ago, I called out local hospital clinic. Even though I don’t have health insurance, they would still see me. There is no way I can afford to see an endocrinologist, so I saw a family practitioner (any Dr is better then no Dr) I had my appt on Tuesday, and I was really impressed with the Dr that I saw. She was attentive and she asked me so many questions. It was great to feel like she was actually listening. And on a HUGE plus side, she has hypothyroidism herself! She knows what it’s like to feel “junky” she knows first hand what I’m going through. My favorite part? If I don’t find success in my new dose of medication, she is willing to go to a natural thyroid medication. (I’ve been all over every single thyroid forum online, and it can be a real hassle to get a Dr. to even consider natural treatment)
I know it sounds silly, but I’m really looking forward to going back and seeing what my levels are in 6 weeks. I’m excited I found a Dr who listens with an open mind, and I’m thankful I have an amazing husband who supports me in taking care of myself, so matter how much debt we get into.
My advice to anyone struggling with any type of health issue? Do everything you can. See any Dr who will see you, even if you don’t have insurance. Don’t be afraid to ask questions. I know its scary, but do you know what is even more scary? A world without you in it!
I know the money situation is going to be a hassle/burden/pain in the ass until we get the insurance situation figured out. But I don’t care. I would rather be in debt and healthy, than laying on my couch not being able to function and take care of my children. They are what is driving me forward to take care of my health. They are my inspiration to be the best me I can be. My kids deserve the best mom in the world, and I’ll be damned if they find it anywhere else 🙂