Hi everyone!
I am new here and just had a quick question. Ofcourse it's one of those questions that doesn't make sense without some background information, so here goes....
I am 29 years old, about 12 years ago, at age 17, I was diagnosed with Grave's Disease (hyperthyroidism). At that time I really didn't realize what that meant and a lot of me just really didn't care. After 12 years of these symptoms I decided to go back to my endocrinologist and do something about it. So in November I went to see Dr. D (my endocrinologist) and after him yelling at me for not coming back sooner and some labwork, sure enough I still had Grave's Disease. Out of the couple of options he gave me to "cure" the condition. I decided with the radioactive iodine therapy.
On 12/4/2008, I took one little pill and my life has been worse ever since. My follow up with him was 6 weeks later. When I saw him in mid January and he asked about my symptoms, Dr. D decided that my thyroid levels probably was not low enough and he wouldn't draw my labs that visit. He said he would wait another six weeks and then maybe draw my labs. About a week later everything hit me like a ton of bricks....I had absolutely no energy, I was constipated and depressed just to name a little. Without realizing it, I had also gained about 15 pounds. So I called up Dr. D. He told the nurse to have me come in for labwork. The following morning I arrived for my labwork and later that afternoon they called me to ask where I would like my Levothyroxine script called into. I started on 100mcg per day, the following day.
About a week later I started having muscle cramps. There really wasn't a trigger at all, I could just be sitting on the couch reading and get a huge cramp in the side of my neck. Or try and prop my leg up and my thigh would immediately cramp up. No area in my body was safe. I just would cramp up without any warning. This went on for a week and I called Dr. D's office. I told the receptionist my symptoms, after speaking with the nurse, she spoke with Dr. D, who said to cut my Levothyroxine in half and only take 50mcg daily for a week and then continue with the whole dose. I took the new dose for a week without really seeing any relief for my muscle cramps. Then started taking the whole dose again.
By this time I was starting to have different symptoms. The best way I can describe the new symptom was racing thoughts. I would wake up in the middle of the night with my brain just racing away with thoughts and I wouldn't be able to go back to sleep. It didn't matter what time I woke up, my head would just be going crazy with thoughts. I couldn't keep my thoughts straight either when I was awake. So I called Dr. D's office again, only for the nurse to tell me that it takes a good month for Levothyroxine to get into your system and that she didn't think the racing thoughts had anything to do with the med. She spoke with Dr. D and he said for me to go to an outpatient lab and have my labwork drawn. The next day I got a call from the nurse who stated that my thyroid levels were just where the doc wanted them and maybe I should see my primary care physician or a psychiatrist for the symptoms I had been having.
Now completely frustrated, I called up a PCP, since I didn't have one to begin with who made me an appointment for later in the week. On 2/20/2009, I went and saw the new PCP. I told her about the muscle cramps and the racing thoughts. She attributed my racing thoughts to my recent trial of Chantix and told me that it was the medication still in my system. (I had taking Chantix back in late november to try and quit smoking, but had broke out into a rash). For the muscle cramps she was certainly perplexed. She decided to draw a whole bunch of labwork on me. That afternoon she called me to let me know my CK level was 1,683. She asked if I was dehydrated and I let her know I drank plenty of water. She told me to watch my NSAID use and she would see me the following week in her office. Last tuesday I went to see her and she stated that she found articles for correlation between muscle cramps and hypothyroidism. I told her I had found the same articles online and they stated that once your thyroid levels came back into range the muscle cramps would stop. Mine hadn't stopped and according to my endocrinologist my thyroid levels were good. She then stated that she thought the muscle cramps were coming from my high CK levels and that once my CK levels came down the muscle cramps would stop.
I guess somewhere in the beginning of all this I should have let you all know that I am a registered nurse, who worked a cardiac unit before changing over to a dialysis clinic awhile ago. I guess I could be incorrect on this one but I was always taught that CK's were enzymes that lived in muscles in your body and are released when that muscle is damaged. So I guess this is where I am getting confused???? How can an enzyme that lives in your muscles until they are damaged or cramped be causing the muscle to cramp????
If the muscle cramps are related to my hypothyroidism and that my levels are too low, why did my endocrinologist decide to LOWER my levothyroxine dose for a week, instead of raising it or drawing my labwork first....
My PCP decided to draw my CK level on my last visit 3/4/2009, she stated she would be happy with when she saw a downward trend. Now on the day I went and had my labs drawn I hadn't had a cramp in 2 days. I could have told the lady that the result would be lower because I knew I hadn't had a cramp in a couple of days. Low and behold when the result came in at 460, my doc called me with the happy news and pretty much said call us if you need anything else......
Errrrrrrr, this is very frustrating.....
My endocrinologist doesn't want to see me until april/may.....I guess I'm just supposed to live with the muscle cramps for the rest of my life. They don't happen everyday, but when they do they are pretty much debilitating for hours. It's annoying....
Anyone been through this situation or have suggestions as to what I should do?? My husband wants me to go to another Endocrinologist and PCP.