Radio iodine symptoms and conditions

My thyroid troubles started in 1993. I am not sure how long before the discovery I had the problem. Mine started as a nodule on one side. I was immediately put on Synthroid and had to go see the Endo every 6 months for a biopsy. In 1995 I became pregnant. I had one more biopsy until after the birth of my daughter. The Endo told me he wanted to see me right away after she was born to do another biopsy. I had my suspisions, but didn't think anyhing until after she was born and went for my biopsy. Well, I had cancer. I went through the whole thyroidectomy, the 3 days isolation with radio-iodine, and every year to every few years after I had to go back and get the radio-iodine treatment, while not the high dose as the first time, it went with the complete body scan. In fact, I am due now, but don't have health insurance. My dose has been switched a lot, I have probably been on every dose from the lowest up to .200mcg, which has been the highest for myself.

Symptoms: pre-thyroid disease, I am 5'2. I was always 110-115 lbs, I was 22 yrs old and 120 lbs. when I married in 1993. I did notice gradual weight gain, probably because of my thyroid problems. I am sad to say that now I am around 180 lbs. I cannot seem to lose the weight unless I go on a total starvation diet. I managed to lose 10-15 lbs over the past summer, but unfortunately for me it has come back over the winter. I tried to stay as active as possible by going to stores and malls to walk around. I do for a fact notice that when my dosage for Synthroid goes higher, so does my weight gain. I was on .137mcg over the summer, and I think that was a good dose for me, that was through the regular dr. The Endo is the one who put me back up to .150mcg. My Endo told me the thyroid is a regenerative organ, so it CAN grow back. I guess they don't want that in case of cancer again, and I guess that is why he keeps me on higher doses.

I personally cannot stand it. I feel it is a horrible curse. I feel very robbed of my previous active life. I have been dealing with this now for 12 years not having a thyroid and being on this medication. I feel angry that I do not have the energy to do things with my 12 yr old and 3 yr old. I miss the way I was before having thyroid disease. I feel very sad when they come up to me asking to do certain things and they (nor anyone else I know for that fact) can understand that I just feel so whooped, and no energy. All I ever seem to want to do is take a nap. I have migraine headaches constantly, I am constantly tired. I cannot concentrate, I have some memory loss. My ex-husband, and my current husband too for that fact think I am just being lazy. Well, that is not so. There are moments when I do feel a burst of energy, but then, I have to use that burst to do the things I need to do around the house.

Pre thyroid disease I was always active, never tired, could do anything. After: TIRED, I was 24 in 1996 and felt like an old lady, dry skin, no matter how much lotion I put on. The tub is full of hair, while it doesn't come out in clumps and I still have thick hair, I have hair all over the place. Irritable, mood swings, happy to angry and the snap of a finger. I can have insomnia some nights, constipation, lots of the same stuff others have listed on this forum. Those side affects are the same no matter what dose I am on. And like I said the higher the dose for me, the more weight I pack on. It is instantanious. Over Christmas, and no, it wasn't from eating all the goodies, I gained a lot of the weight I had lost over summer back, and that was because a few weeks before, the Endo had put me on the .150 mcg.

I think what a lot of people are posting here are more side effects of thyroid conditions rather than side effects of thyroid medication. After my RAI treatment I started on a generic brand of levothyroxine. I even got my doctor to let me try Armour Thyroid since many people do well with it rather than Synthroid. Armour didn't work well for me, but it definitely is the only way to go for some people. After months of misery, things finally smoothed out. I was a royal pain in the butt to my doctor because I questioned everything. The biggest side effect for me going from hyper to hypo was edema. A clinical name for water retention. It wasn't so much the bloated feeling that bugged me. It was the pain in my hands and feet from the water retention. I have never, ever had a problem with carpal tunnel syptoms even though I have always used my hands a lot for work and I play the guitar. I had to add a small dose of dieuretic to control the edema and relieve the hand and feet pain. Sometimes it does flair up depending upon what I eat and how much I sweat, but that's what goes along with this type of illness. It's not just a magic pill that makes you feel "back to normal". You have to be demanding of your doctor to try other things to get you to feel right. You even have to pay attention to how you feel at different times of the year to figure out how to adjust what you take, eat, or do to feel better. I have noticed that with all things remaining constant, how I feel in terms of energy level and edema is related to the season. The body is weird that way. I still have side effects from the treatment from time to time, but I finally figured out what seems to work best for me. Maybe things could change over time, but I've learned that medicine just doesn't have a black and white treatment plan that works the same for everyone for thyroid related conditions. To sum it up, question everything your doctor tells you, demand to try things that you think would help you feel right, pay attention to what your body is telling you and adjust, and fire your doctor if they treat thyroid problems as black and white. Your doctor is not the one suffering from the condition, you are. It's your life and there's nothing wrong with being demanding about wanting to feel right.