Jessie James, Thyroid Thrivers
Thyroid Nation
25 years old
North Carolina, USA
Hypothyroidism
2013
How it all started, up until now, my Hypothyroidism woe’s….
At the end of 2012, I decided that I wanted to make a change and get healthy. So, I got moving. I was on a mission to start working out and becoming a more healthy and fit me. As August 2013 rolled around, I had dropped an incredible, 40 pounds. Wow, what a load off! I was feeling better than ever, and more amazingly, I had tons of energy. During the week, I was at the gym at least 4 or 5 days. Running was my passion. Heck, anything that involved getting a great workout, was where I thrived. I was eating really healthy food. I was smiling more and felt like I could conquer anything! I was back.
As weird as this sounds, after about 4 weeks of taking Levothyroxin, I began to have all the symptoms he said I should have had, BEFORE the medicine. Crazy, right?!
That was, until my yearly physical, due that August. It was as routine as anything else in my life had been. Except, that it wasn’t! The results from my blood work came back with some abnormalities and I was immediately, thankfully, referred to an endocrinologist. I couldn’t believe it when the doctor said that I was Hypothyroid and had Hypothyroidism. What?! He told me a little about it and explained the symptoms. (I didn’t have ANY of the symptoms he explained, at the time, but he said I must have just pushed through them, because the numbers said differently) Levothyroxin was to be my new everyday friend. By starting this medication, he said that soon, I would start feeling much better. I thought I was feeling good already?
After 3 weeks of the medicine, I felt the complete opposite. I was miserable and I felt, not better, but much worse. As weird as this sounds, after about 4 weeks of taking Levothyroxin, I began to have all the symptoms he said I should have had, BEFORE the medicine. Crazy, right?! I started getting terrible migraines, no energy, I couldn’t think cleary and by 3 p.m. every day, I felt like I could soundly sleep the day away! And sometimes, that’s exactly what I did. Me, the energizer workout girl.
By mid-September, it had been 5 weeks since my diagnosis and surprisingly, my numbers were even worse. So, my doctor raised my dosage.
Then, on October 3rd, just 8 short months ago, I went to the doctor for a different reason. I was suffering with a painful rash under my arm. It was excruciating and it turned out to be, of all things, Shingles. First hypothyroidism and now this? For the whole month of October, I was taken out of work. Every medicine they tried, did NOT get rid of it. I took 2 cycles of a strong prescription medication and still nothing. I was beginning to give up hope and I was miserable. Finally, the 3rd cycle of medicine did the trick. Shingles no more! But, why did I get it to begin with? How could all of this have happened in such a short amount of time. I was ready for a new year and I kicked it off right, making myself feel better and living more healthy. At least, that’s what I thought.
My doctor claims that my immune system was so depleted, from all my thyroid problems, that it caused me to break out with shingles.
I continued the course of action, per my doctor. Eventually, however, I stopped having my period. No cycles in December, January and February of 2014. I kept thinking, “Help! What is going on with my body?” My doctors are still unsure why my menstruation stopped and they are the experts. I absolutely have no energy anymore. The brain fog is awful and it is difficult to do anything, much less exercise. (which used to be such a form of happiness for me) Also, I’ve started to gain back the weight I was so successful at losing. It just won’t go away. I work out, eat healthy and obviously, get plenty of rest. What more can I do? Or do I need to be doing anything? Not to mention, I have the worse dry scalp and itchy skin. I’ve never had either of those symptoms in my entire life. I’m still young, so why? What caused this?
Without a TON of coffee in the morning, I would never have enough energy, to even get out of bed, much less do anything productive, each day. Am I being cared for, correctly? This is a question I ask almost daily, now, as this is all very new to me. I was just a healthy, happy, responsible girl, who, less than a year ago, was taking fabulous care of herself and going to her yearly check-up. Then, BAM! It’s as if someone bopped me on the head, knocked me out and I woke up in a awful nightmare of Hypothyroidism.
What questions should I be asking? Should I get a second opinion? Should I change doctors? I am online all day researching, when I feel OK, which isn’t very often lately. It is a definite struggle and I know I am not at the end of my journey. I am hoping to learn and encounter more wonderful guidance and suggestions, along the way. Thyroid Nation, as well as many others including Mary Shomon, have been very enlightening and helpful. Great advice is around every corner now, which I am more than grateful for, but I still have a ways to go. I know I need more help defining me and this disease. I’ll keep searching, please keep leading the way.
Just know, I am fighting with all my might. I am a warrior and a Thriver. I will get back to normal, and the old me, again soon. Just wait and see!
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Hi Jesse,
I was disgnosed about 22yrs ago. The only symptom I had at the time was pure exhaustion maybe 15lbs over weight but really that was nothing. I’ve been on synthroid, levoxyl, levothyroxine, tirosint, armour, cytomel and now I’m trying Nature Throid. I’m actually feelng full for the first time in my life. But, my physician is super cautious and she’s under medicating me. So, I still have a bunch of the symptoms. My recommendation is to get a notebook and start taking notes. The other websites I found helpful are : Stop The Thyroid Madness, Thyroid Sexy, Thyroid Loving Care, Dr. Wiggy, & there’s a few others on FB. Check out their notes pages. They tell us what blood tests we should be looking at & what range they should be in order for us to feel human again. They also have lists of doctors that have helped other patients. The problem I find is that we know more than our own Doctors. As for the endos they tend to not look at all our symptoms & generally stick to T4 meds. Personally I believe the Nature Throid is right for me. I just need my amount adjusted. When you see your Dr. take your notes in with you. That’s how I was able to get Nature Throid prescribed to me. I’ve also started to change my diet. (no Gluten) I’m also looking at the products I use, make up, soap, deodorant, etc. I’m doing a complete overhaul. I want to feel better & 22yrs is long enough. Don’t give up! I’m not & hopefully we as a group will cause some changes & bring some awareness to this disease. Wishing you all the best on your journey to better health.
Thank you so much! I have been trying to record in my phone when I have certain symptoms and it always seems like I get the worst headaches and the most tired the first week after they raise my dose! This last time they went up 2 steps on my levothyroxin and it was terrible! This past Thursday I was told I have celiac disease and Hashimotos disease! I have been researching like crazy jut trying to did some help! And my next step is to get a second opinion! 🙂
I am sorry to hear that you are going through all of this Jessie, you look beautiful and happy in that photo 🙂
Your symptoms are similar to mine, I also lost a lot of weight and worked out like crazy and ended up two years later exhausted, depressed and i’ve gained some of the weight i’ve struggled to lose. My body simply shut down one day, i was pushing it too hard.
First of all, never trust these silly doctors, 90% of the time they are clueless. I dont have the option of visiting various doctors but if you do, go for it. The ones i’ve dealt with always dismissed everything i told them , saying it was all in my head and that its not a big deal to have hypothyroidism/hashimoto.
I also am not able to request for a different type of pills since theres only one brand on the market. So if i were you i would look into that as well.
I’ve recently went paleo (tons of benefits for us hypos) and started working out again (mild workout), its not easy but i do feel better.
You working out so hard must have exhausted your adrenal glands and probably thats one of the reasons you feel so bad now. Basically all your hard work on losing weight and working out, overstressed your body, along with poor nutrition choices that you thought were healthy at the time (been there done that), like low fat, low sodium, coffee etc
So bottom line, tweak your diet (limit coffee and sugar consumption,maybe increase salt intake, eat lots of protein and good fats) get tons of rest cause those adrenals (the thyroid gland is one of them) need it, and even consider taking vitamin supplements like vit D,C, B complex.
I apologize for the lengthy post and grammatical mistakes if any (i hope i make sense), English isn’t my native language. I hope i somehow helped you and that you will get better as soon as possible. <3
My next step is getting a second opinion! This pay Thursday he told me my numbers were still high and I had hasimotos an celiac disease! But he dos nt explain them to me and says to jut research it! Thanks for all the encouragemt and advice 🙂
I had a follow up appointment this past Tuesday and I was told I had Hashimotos and celiac disease! I wasn’t even aware I was getting tested for that! The doctor did not give me much info on either bc we didn’t have enough time in my appointment slot, but I go back on 5 weeks! As far as I thought, he had told me he only tested for TSh and my numbers were around 14 which he said was high! They have been that high for 7 months! Thank you for all the advice I am going to go for a second opinion as soon as I can !
Any updates? I have all the same symptoms. It’s really a horrible way to live.
LYNN on July 12, 2016
Jessie,
Your experiences mirrored mine to some degree….although I am considerably older than you by 25 yrs. I considered myself a VERY young senior who has always been active…until i retired from teaching! I had enrolled in a doctor-monitored weight loss program and also lost 40 lbs. I looked great and felt great. Then, I came down with the dreaded shingles and went through a living hell. I have been left with PHN….permanent nerve pain/damage where the rash had appeared. About a month ago, just by chance, I was told by an ENT that I have a benign mass on the right side of my thyroid….the diagnosis came BEFORE the symptoms, but now those are starting to set in. I prided myself on being one of the healthiest gals I know (my age) and now that’s not the case….what the heck happened, I don’t know! I Googled my inquiry as to whether the shingles and thyroid issues could be related and that’s when I came across your story. I wish BOTH of us luck as we travel this unfamiliar path. Good health is very fragile and not to be taken for granted!
I too have had a LONG difficulties with thyroid disease.1996 diagnosed with graves. They treated me with a radioactive isotope ,3 months to bring my crazy low thyroid. To too low.sythyroid from low doses to slow increase.has little effect on my the or t3/4 But gave me a fast heart beat..that by 1997 .I had a full blown..ER with Adobe and racing heart dangerouslt!!.. transient hyperthyroidism.( This is the symptoms that I had when first diagnosed ..
After days in ICU my heart rate returned to normal..but no my tsh levels fluctuating on the same amount of thyroid my thyroid fast forward 12 years endless doctors..change in thyroid meds ..And countless ER /ICU visit….
I refused to go higher then .150 on the thyroid replacement med.
I developed permanent Atrial fibrilation and have to take 2 heart medicine.
My health and energy levels ebb and crash.
NOW I have shingles!! I seem to get it under control with various meanswestern meds and holistic. And it returns!
I know it is ALL connected.. but I am terrified to increase my thyroid replacement medicine because the tsh blood test go from to LOW to OK ..same dosage. .I am religious about how I take it and when!
And now shingles!!!!help. Any one.
tll