So...getting to the point of the story...my GP calls me on a Sunday night about two weeks later and asks me if i feel okay. It turns out my TSH level was >150. She said it was a lab fluke as I didn't have any hypothyroid symptoms so we'd retest it. We did that week and again it was at TSH>150. She was baffled as I am tall and thin, somewhat underweight and only had very mild fatigue. She hesitantly started me on a 75 ug dose of the generic levothyroid, had me go in for an ultrasound on my thyroid and tested all the other hormones as I also had been lactating a bit (I know, it seems like this would be a big deal but I nursed my kid so I didn't think much of it). The first doses were like the ritalin only better. I felt fantastic. I had so much energy and my brain was so clear and focused. I could "feel" again. After the fourth dose I still had the good effects but I started to feel bad as well. In the AM I would be okay but by three PM I would have a horrible headache, be very nauseated, and get very weak and shaky. I started having mild shooting pains in my arms and legs and urinating like a pregnant woman, only worse. I started to notice odd things about food like tea tasted really flat and I was having really strong salt cravings. On the sixth day I stopped the meds as I was feeling so terrible. My GP was on vacation so I didn't want to call her and bug her till the following Monday. I actually felt much better for most of the day.
That evening I started to feel like my hands and feet were really swollen and burning-to the point of explosion. They didn't look swollen but felt really hot to the touch. I started having stabbing pains in my arms and legs and was hurting pretty badly. My first venture into internet support groups was at this point when I posted what was going wrong with me on a thyroid message board. I finally called my GPs office and had her paged as I felt so bad. She called me right back and told me I was having an allergic reaction to the synthroid and I should take some benedryl. So I went down to Target and bought a box. I was hurting so much I tore the box open and ate four of them in the store-perhaps it was a bit too much benedryl but I sort of equated it to ibuprofin and thought twice the dose would just work twice as well. We all make mistakes in life. I made it home still feeling bad and got back onto the message board where three people had logged on and told me I might be having an adrenal crisis due to the initiation of the thyroid hormone treatment. I tried to reply but realized I couldn't type anymore and was starting to tremor. I stood up and fell over and then my husband got me into the car and to the ER which is just around the corner. I didn't want to freak him out so I told him to go home and stay with our nine year old son and I'd walk in by myself. He dropped me at the entrance and left.
I made it to the desk but then couldn't walk anymore as the tremor had gotten so bad. I was also starting to breathe really strangely, very spasmadically and in spells where I would take several very deep and then several very shallow breaths. The took me straight back and then my husband was there as he had wanted to make sure I made it in okay. I couldn't talk at this point and the nurse and dr kept telling me to try and control my breathing. I could hear them but I couldn't really speak clearly. I finally composed myself a bit and tried to tell the ER doc what was going on. I said I might be having an adrenal problem but I didn't know. He asked me why i thought that and I said it had been suggested to me by somebody on a message board. He looked very skeptical but I think he tried to take care of me the best he could. My electrolytes looked okay but my TSH was 89. He concluded I maybe needed more synthroid and that I should NOT stop taking it. He said it wasthe benedryl that caused all the problems. I didn't want to argue with him but i decided not to take the synthroid the next day and called up an endocrinologist.
They got me in that day. She-henceforth labeld as Dr. Satan -my first endocinologist quickly looked me over and decided I had adrenal insufficiency and told me not to take the synthroid. She ran cortisol, ACTH, and aldosterone tests and set up my appt for the following week. I made another short ER trip in that time as I had started to tremor again. I had read up in the week enough on adrenal problems to realize I might have low salt levels so quickly started increasing my salt. While waiting in the ER I drnak three V8s from the vending machine and felt much better and left.
When I went back in to see Dr.Satan she said my cortisol levels and ACTH levels were fine and I just needed a lower initial dose of synthroid. So I was to start at 25 ug for a week and then go up to 50 ug for a week and the visit her again. By this time I had read a lot more, and having a BS in biochemistry and an MS in biophysics let me understand quite a lot of it, so I was a bit skeptical. But I figured this lady had been doing this a long time so I should trust her judgement and follow her guidance. She was board certified and all that jazz. Surely she knows her stuff.
I later noted she didn't have my aldosterone test at that point and it was below normal but again I figured that she had looked it over when it came in and would let me know if there was a problem. So I started my meds like a good patient. After the fourth day all the old symptoms were back-the headache, nausea, weakness, fatigue, tremor, excessive urination and salt craving. I started to increase my salt intake which initially seemed to help. I also noticed a new symptom starting as the days went on-numbness in my hands and feet. However drinking a bit of salt water of gatorade or V8 would control all the symptoms and I would feel okay. After about five days the salt water didn't make me better, it just seemed to keep me kicking. I would go through phases of grogginess and extreme fatigue. In the middle of the second week I got stuck in a long meeting where all I could drink was water. It seemed like even drinking the samllest amounts of water made me urinate out much more water and my hands started to get very numb. Half way through the meeting my hands were ice cold and pale. If you pinched the skin to test for dehyration it would just sit there all folded up. I left the meeting and kept running into doorways and my speech was starting to slur. I called my endo and got voice mail. I left a message but after waiting an hour at my office nobody called me back. I got in my car and started driving home. I couldn't feel my hands but thought if I could just get home and lay down I'd be okay. Halfway there I started having spasms under the left side of my chest. Like the whole left side of my body was caving in upon myself. I was terrified at this point and was going 105 mph to the closest ER. I got there, explained what had happened and then told me I was likely hypoglocymic and to have a seat, but not to eat or drink anything. So I waited for about an hour very incoherent and confused, staggering when I tried to walk. I finally found the vending machine and drank three V8s in a row. After a few minutes I felt a much better and left.
I took a half dose of syhtroid the next day as I didn't want a repeat of the first round of stopping synthroid. I called the endo and got some nurse who said it sounded like I was having an electrolyte problem-what a smart kid-but then he said he wasn't a dr or even a nurse so he'd get them to call me back. The nurse calls me back and says to make an appt with a cardiologist as I have a heart condition and that's why the synthroid makes me ill. She also said to cut the dose of synthroid by half. The next day I took no synthroid, went to see the cardiologist who said my heart was fine. During the day I kept going through delerius spells. I would get really ahaky and weak and drink some gatorade, which would then make me feel really groggy and delerius. The endo called me herself at 8 am and said to come in for an ACTH stimulation test that afternoon. When I showed up she said my electrolytes where fine and yelled at me that they would have seen that and they had tested that-which they had not. She yelled that she had never seen anybody like me in 5000 patients and 35 years of practice and that I just needed to keep taking my synthroid. She said she'd do the test but that that wasn't what was wrong with me. I couldn't understand why she was so angry and hostile. I had never been argumentative or even suggested what might be wrong with me. I had tried to keep track of what had happened to me over the week on a piece of paper. She wouldn't even look at it and her nurse practitioner told me she really needed the condensed version. I had had four spells of delerium that day, one of them while sitting in the cardiologists waiting room and she wants the condensed version.
They took me to a little room to wait for the nurse where I sat and cried. I am not by nature a crier. I am actually pretty tough but I was in such bad shape and Dr. Satantic Evil demon seemed to think I was making it up. The nurse came in and gave me the ACTH shot. Within ten minutes I felt so much better. I stopped hurting, could think somewhat clearly, and felt okay. I left after the blood draw and ate the first meal I could eat in the last two weeks. I drank two full glasses of tea and felt so much better. It was so amazing how good it could be to eat again. All told I lost 15 pounds in two weeks.
