I am a lot like you. It's horrible. I seem to be really bad when I wake up, and then in the evening I have a bit of a better time. That is until I try to sleep. Horrible symptoms come up again. I've just given up on my body. Doctors like to tell me I am crazy yet I have PROOF that one odd autoimmune disease also started during my flare before my thyroid removal. I developed oral lichen planus. I know they are missing something else. I know my body and its not right. I am in so much aching pain now that it is hard to do anything. My body is always spasming and twitching and then of course the chest pains!
I never actually gained a significant amount of weight from the hypothyroidism. I used to be overweight for other reasons and so I have a very good idea of how many calories I've consumed, and I'm very sensitive to the changes in my body when I start to gain weight. I think I gained maybe 3lbs on average but I had reduced my caloric intake to probably about 900 calories per day and I walked 3.5-7 miles per day and my weight was still creeping up so I knew something wasn't right. Most people just have no idea what it's like to keep gaining weight even though you are essentially starving yourself and exercising all day.
You sound like me...and, just like you, i started falling apart about a year after my surgery. From the time i had the surgery and into months later, i was working out, lifting weights and doing whatever i use to do but i would get tired and exhausted by evening, daily. Now, i have to do my running around and chores in the am and if i over do it, i will be sorry. Not pleasant at all but it is what it is.
I know about the Spoon Theory. It's very familiar in the Fibromyalgia community. And, many with Fibromyalgia also have thyroid issues, so many are on both forums. I am familiar with the weight issue and feeling like I'm being judged as if it's my fault I'm fat, too. Those who have never had to struggle really have no business judging other people, because they have no idea.
JM- scratch that. I never lose a pound unless hyper. Then I lose and gain it back when hypo. Since I always switch back and forth between the two I lose and gain the same pounds over and over. My newest digestive issues can result in loss too, but that is mainly because of dehydration.
Bruce- No thyroid, but still flip flopping continuously. The only difference is that my hyper isn't as hyper as it was.
JM- I hear you about the weight. At this point, I have so many worse things though, I don't even care what I look like. I just want to be able to live one normal day without my whole body falling apart. I do know thought that I eat a very very healthy diet of mainly fruits and veggies, a tiny bit of grass fed meat, and no sugar or processed foods. I never lose a pound.
If my TSH were 20 I would probably be standing in the middle of the road naked wondering where I put my wallet.
I'm generally not a vindictive person, but I wish hypothyroidism on people who have never struggled with their weight because they have always had a stable metabolism, and who are critical of people who have weight problems.
I wish it on them until they gain 20-30lbs (because that's how much weight it takes for most people to feel they have a weight problem) and then I will leave them with their normal, stable metabolisms so they can see how good they are at dieting and exercising everyday.
i had severe fatigue when my tsh was at a 5 didn't really lift till it was about a 2 that's what it could be ! just some more time and tweaking dose till those numbers are optimized hang inthere.
but you dont have a thyroid anymore....?
That is awesome. I think I have a lot of secondary issues going on myself, but it could be due to the fact that my thyroid has not been normal in 2 years. I haven't stayed at one level for more than 7 weeks. I am ALWAYS hypo or hyper. I can't even get in a normal range (other than the few short 7 weeks I mentioned).
I think the ear ringing has gotten better for me, my tsh is down to 20.20 but the fatigue is still there. thats my biggest symptom.
I hate that. I am so jealous of people that can have fun. I was thinking that I rarely smile because I am always experiencing some kind of horrible symptom that prevents me from just relaxing and enjoying the moment.
the rollercoaster *****. I was fine all morning. About 2 pm, death sets in. I lay down, wake up 3 hours later missing the whole day. SO much for saturday with the kids!
Me too, especially my doctors! I was telling one doctor I am disabled. I AM! What can I do??? He actually yelled at me and said "you have 2 legs and 2 arms, you are FINE". NO I am not fine. I wish that were the case. Do they think we want to feel this way? Does he think I want to sit at home at 33 with my masters degree deciding if I am well enough to walk in the other room and make my son lunch? I have to anyway, but normally I am clutching my chest and working through palpitations and pain rushing so I can sit back down. What job can I get like that? I did a research paper and they said its especially worse in women at child bearing ages as this is the time they look the most healthy and fertile. Doctors do not believe them. This is true always with autoimmune problems and thyroid disease though. You can't see it so therefore it must not be there. One hour would be great.
id like everyone i know to just feel this way for 1 hour. just 1 single hour.
Amazing and my story exactly. I wake up everymorning with a urge to find the cutest outfit and acessories to match, because i know that i can at least look beautiful on the outside when i don't feel like a burst of energy. I give up on trying to make people understand what i go through because it's of no use explaining something to someone who is not going through it and will not understand.
Awesome article. I always feel that people don't take me seriously because I don't look sick. Even my own family struggles to understand. I would never wish my illnesses on anybody, but I sometimes wish they could spend a day in my shoes.