I waited a few weeks after the radiation treatment and then decided I needed to go back to the doctor. By that point I had lost about half of my hair and I was also having tremors, heart palpiations, and extreme insomnia to the point that I was only sleeping a few hours a night but the worst was the exhaustion. I was only functional for about 4 hours out of any day and other than that I was either asleep or resting. I used to walk for an hour or more most days but even a 15 minute walk could completely wipe me out for the day.The experience of visiting the doctor again was frustrating. He seemed put out that I would just make an appointment and show up. I told him all of my symptoms and he indicated he thought I could be hypothyroid (not enough medication) and ordered blood tests for me. The next day the results came in with my TSH being about .34 when it had been 1.43 prior to the surgery (meaning my body though there was more than enough T4). Still the doctor recommended increasing my dosage of T4 to solve my "complaint" of fatigue.
After reading that, I didn't know what to do. I didn't think he was listening to me, I didn't think I was hypothyroid, and I didn't think increasing my dosage when my TSH was already so low and my T4 so high was going to fix how I was feeling. I started doing some research and that's when I discovered that extreme fatigue, while usually associated with hypothyroidism, is also a symptom of hyperthyroidism.
I've said before that the thyroid hormones (T4 & T3) control metabolism but what is "metabolism?" I think most people have some vague notions of what it is based on dieting and exercising fads, but really metabolism is the rate at which all of your cells do work. The more T4 there is, the faster and harder your cells work. This is really not good because you're wearing out your body, and can be especially hard on the heart which is really sensitive to T3. This is why hyperthyroidism is bad for you.
The reason I'm losing my hair is because thyroid hormones also control growth. Most people know that dogs shed their coat, well its the thyroid hormone that triggers that in them and if it's excessive enough it'll trigger it in humans as well, so basically I'm shedding. How long the process will go on, I don't know, but just like a dog doesn't go all bald and mangy when they shed their winter coat, I also won't lose all of my hair (in theory). When the doctor examined my scalp he saw a bunch of 1-3 cm hairs which means it's trying to grow back but it'll be about a year before I have a full head of hair again.
In the end, after doing my own research, I told the doctor that I thought his diagnosis and suggested treatment were wrong, that I was probably hyperthyroid and needed to reduce my medication. He said he completely agreed and so about a month ago I started skipping one dose of my T4 each week. Skipping that first pill felt like a miracle cure, I immediately felt better. As the week wore on I started feeling worse again and then the next time I skipped a dose I felt even better so I knew I was on the right track.
It's taken awhile for the change in dosage to settle itself out. I'm still losing hair and am down to about a third of the hair I started with before surgery. Most of my severe symptoms have receded (the heart palpiptations, extreme fatigue, and insomnia) but I still feel tired and groggy all the time. I did another blood test about two weeks ago that showed my TSH was up and my T4 was down, but I'll have to wait another month to be sure how the changes in my medication are going. I might need to slightly increase the dosage or maybe things will work themselves out.
I'm tired of not feeling normal and I'm worried that I'll never feel normal again. It's been over five
months since my surgery and I haven't felt right since then. I expected there to be some problems with getting the hormones sorted out but it is still frustrating. From doing a bit of online reading, most people said it took them about a year to start feeling normal, with lots of messing around with medications to get them right.
I'm also having to get used to a new way of eating. Because of the hyperthyroidism I've been craving protein like crazy even though I've never been much of a meat eater. I woke up one day and had leftover meatloaf for breakfast because I was craving meat so badly. Eating now has a noticeable effect on how I'm feeling. If I'm feeling tired and I eat I feel more energetic. I've also started eating more sugary stuff which I avoided for years. I have to be really careful to eat often and I find I have to avoid low calorie food because it doesn't give me enough energy to get through the day.
This is all counter to what I've been doing as far as eating for the last couple of years and it feels horrible to be putting so much high calorie food in my body but on the other hand my body seems to be loving it. I can only hope that at the end of this ride I've settled out to a diet and a body I can live with.
