Imagine the most exhausted you ever felt. Maybe you stayed up all night cramming for a test in college, or a state board test after finishing nursing/beauty/etc school. Now, imagine feeling that way despite sleeping for 10-12 hours a night. No matter what, you can’t shake the fatigue. Now you’re noticing bald spots forming and your hair is getting noticibly thinner. Suddenly, putting your hair up in a ponytail isn’t an option- a ponytail is the size of a normal person’s pigtail.You’re dealing with fatigue and hair thinning- now you’re emotions are falling apart. You keep feeling anger build up over nothing- now you’re crying because your dog barked wrong and you think he’s mad at you. You’re crying at the drop of a dime, your hair is falling out and you’re always tired. You think it must be that time of the month but just to be safe, you go to the doctor. They poke around and find a lump in your neck so they send you for a biopsy. The biopsy comes back negative for cancer, but an ultrasound shows it’s a cyst. You’re anxiety flares and you suddenly can’t sleep, you’re always cold and always shaky. You go for further tests only to find out it’s a large cyst inside your thyroid that is causing your thyroid to over produce TSH and it’s making you hyper- but at times it’s making you hypo. You set up your surgery to have the cyst removed and in that time are put on heart medication and two weeks before the surgery, you’re put on medication to kill your thyroid function- because having the surgery while hyper could throw you into a thyroid storm- where you go severely hyper and if it’s treated can lead to you dying.
By this time, you feel like a wreck, your life is a mess and you’re doing your best to hold everything together so it doesn’t cost you your job, family, life or anything else. You figure the surgery will fix everything.
You go in for the surgery and it’s an easy recovery and you’re quickly back at work. One day you wake up in a bad mood. After not shaking it, you just start crying for no reason then you’re shaky, hot, cold, hot, something sets you off so you start screaming and then fall into such a deep depression you start wondering if you should even be alive. That’s the point you decide to get help- they test your thyroid after finding out you have Hashimoto’s and thyroid surgery- sure enough, your TSH is off. They put you on medication and it works- you’re back to normal. That normal feels so good you forget everything else- until just a few months later, you’re right back to bad.
Keep going through that cycle- every few months, your thyroid is thrown off and they have to readjust your medication and that describes me for the past two years- just when I go back to normal, I get thrown off.
For me, it started with a positive pregnancy test. I set up the appointment to get my pregnancy confirmed with my OB and his nurse checked my neck. She found a lump so he sent me for a scan. The scan came back showing I had a nodule inside my thyroid so I had to have a biopsy- that came back inconclusive but the panic attack I had during the test (huge needle going at my neck) possibly changed his mind about redoing the test. I had to wait until the end of my pregnancy to be put on anything more than a heart medication to slow the palpatations down. In that time, my thyroid went from high to fine and back to hyper. I was dealing with severe (almost disabling) anxiety followed by severe depression swings. They held off on my surgery because I was breast feeding and they didn’t want to have to keep me from nursing for a little time. When my baby was around four months, we decided on the time of the surgery. I started a new job that had me working nine hour shifts and required one month notice for days I needed off. I naturally dried up working such long shifts (I was afraid of asking to pump but did manage to go home during some of my lunch breaks to nurse). One day, I got a reminder of an appointment with the man who was going to do my surgery so I figured I was going to get my appointment date and set up for surgery. When I was in the room during my appointment, the nurse came in and asked how I was feeling, then asked how I had been after my surgery. I told her I hadn’t had the surgery yet- I thought that appointment was to set up my surgery.
That day, I set up the surgery and a month later, I took a week off work to have it done. They put me on Levothyroxine 25mgs. At first, the 25 was fine but soon I went back to depression and anxiety swings. I ended up going to the ER, I was feeling so bad and they tested my thyroid- once again, I was hypo so they upped me to 50. I was fine for a bit, then one day at work, I was standing when I suddenly got really light headed. I tried to shake it off since I normally feel that way. My hearing faded- everything felt like it was distant, everything was getting dark and I developed tunnel vision. Suddenly, I felt a pain in the left side of my chest followed by my left arm going numb. I started feeling like someone set my left side on fire- it was so bad, I was sweating and in pain from the heat. My right side went cold- like, frozen cold. I was sweating profusely and so cold it was painful. By that time, I was slurring and had my husband come to pick me up. At the ER, they checked my heart rate for 10 seconds and told me it was an anxiety attack. They did check my thyroid levels, which once again, came back hypo. My thyroid was the only thing that came back bad and my doctor upped me to 75 (what I’ve been on for a year now)
I was told that episode sounded like a blood sugar seizure, and I’m no stranger to those symptoms when I need to eat but I know it wasn’t an anxiety attack. I was told that several months ago (and nearly a year after it happened and was dismissed by the ER staff, so they couldn’t test and confirm it)
It took them about 1-2 years to get my dose right for longer than 2-3 months, but lately my tests have been coming back in the normal range.
Hashimotos Thyroiditis is one of two autoimmune thyroid diseases, also the most common cause of Hypothyroid disease. Hypothyroidism is when your body produces too little of the thyroid stimulating hormone (TSH). It’s caused by an immune attack on your thyroid and the only way it will go away is either having your full thyroid (I only had half) removed or when it completely destroys your thyroid leaving it “nothing but a lump of scar tissue” (as per my thyroid surgeon).
It causes fatigue, depression (and anxiety- despite what some professionals say), it will cause fluxuations in your thyroid that go from hyper to hypo before you get stuck on hypo because it’s done so much damage, your thyroid can’t function properly. It causes hair loss, dry skin, constantly feeling cold, weight gain and difficulty losing weight. It also can throw people into early menopause. It can hurt fertility and unregulated, can cause thyroid issues if you’re pregnant.
It’s genetic, so if you have it (or any autoimmune disease) your kids are at higher risk of developing autoimmunity. It’s fairly commonly co-morbid with Celiac (you have over 50% likelihood of developing Celiac with Hashimotos and vice versa). It’s recommended to try the Autoimmune Paleo for 1-3 months, then add things back to see if any of those foods help or hurt- I haven’t tried that diet, but I have done elimination with gluten and dairy- both are problems for me personally so they’re both almost fully out of my diet (very low dairy and gluten free)
It can take you from healthy to severely sick until you get the diagnosis fairly quickly. My progression has been over the course of two years. My hair used to be normal but course. Now it dries like straw and if I move it, you can see my scalp. If I pull it back, it’s the same thickness as half a normal pigtail. I’m always tired. I have 2 kids, an Etsy shop (really, two shops) and a day job in retail- so some fatigue is normal, but there are times I’m useless after I get home from work. There are other times, I’m great but it’s taken them two years to get a dose high enough for me to function and I changed my diet. I’m currently eating gluten free, I’m weeding out dairy and am wanting to switch to a full Paleo diet since it’s recommended.
4 responses to “Living with Hashimotos”
I have hypothyroidism and I’m currently waiting to see an endo about whether I have Hashimotos! It is absolutely miserable, and I’m sorry you’re having to go through this!!
Thanks. Good luck to you with pursuing the diagnosis. It’s a rough ride until you get everything straightened out. How long have you had hypo?
I got diagnosed in January and was put on a really low dose of levo and I’ve changed my diet a lot. When I got my blood drawn in January, they said my levels were “fine” but I’m still feeling awful so I asked for a referral to an endo. I have a family history of auto immune diseases so I’m kind of expecting to have Hashimotos, but we will see! and thank you!!
I have had hypo for over 10 years Medicine never made me feel much better. Finally I insisted they check me for Hashimoto after years of arguing with doctors. Well unfortunately I was right Hashimoto my new diagnosis.