Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Around 17 or so is when I think my thyroid was a little off. I felt okay but as I got older I continued to complain that I did not feel refreshed in the morning and I gained weight easily. So I developed a low calorie diet to control my weight and exercised regularly.
My various doctor's over the years would check my thyroid but they never checked my antibodies. I'd never heard of Hashimoto's until my new doctor, after relocating, told me I had it. I told her I didn't know what that is. She replied, "your thyroid like you thought". Wow! Finally I know and I could take a pill and feel better. --Oh no! That is not so.
I was always a very light sleeper even as a young child. So I was just a light sleeper. Years later my husband would say can't you just go to sleep and stay asleep? Like I had a choice! I found that if I moved around it would wake me. So I would barely move and always hated it if anything or anyone woke me up because I would have a terrible time going back to sleep.
I had heard of Narcolepsy and what I had heard is that people would randomly fall asleep. It sounded strange and looked like you fainted.
My doctor thought I was depressed over a HUGE marital issue. I said NO, just very angry! VERY VERY Angry. But I tried antidepressants and nothing changed. So she agreed, not depressed. But she checked my antibodies and told me I had Hashimoto's. My number was 125. They should be 0 and anything else is Hashimoto's. It can go up or down but will not go to 0. Okay, give me meds so I will feel better. But I just got increase after increase and not feeling better. Then my body stopped processing everything correctly. Vit D was low, calcium was not absorbed but rejected, etc. etc. I could not figure out why all of a sudden my body was not handling anything correctly. I developed Osteopenia and then Osteoporosis in my spine. All of this and in early 50's.
All recommended doses had to be increased over and over just to get anything to the normal range. My fatigue was awful. I was working part-time and sleeping more than I was awake every day for years. I needed to work full-time but was terrified that I would not be able to do it. Then the thyroid medications started to work (got up to 112 mg of Synthroid and 5 mg x a day of Citomel) so I could work until 4:30 and nap at 5 until someone woke me up to eat. I would eat a little and go back to bed. If left alone I would just slept, skip eating and still gain weight so why not just sleep? I chose sleep over just about anything else!
My Endocrinologist said he thought there was something else at play. He suggested a sleep study. I didn't want to do it. --I'll never sleep with all the wires attached. I have a friend who works at a sleep lab so I told her I wanted to make an appointment. The Dr. said based on my "light sleep" that he thought the study would be helpful. --I woke up 75 times in 6 hours. (I thought it was 4 times.) He said I was borderline Narcoleptic. No way! I've never randomly fallen asleep. He says there are various levels. But, ok Borderline? No I did not have that! I said it's just my thyroid and when it is better I will not have fatigue.
I gained 34 pounds while eating less calories that what is required to maintain my weight. Thyroid levels finally improved and lost about 15 pounds then nothing.
Sleep doctor says if I will try Xyrem it will help me if I have Narcolepsy and do nothing if I don't. So I got approved and then chickened out. Just need to give my thyroid more time. Every day I thought: I can't get up, then told myself I have to or I'll be late for work. Then thinking if I'm on time I can leave at 4:30 and be home napping by 5:00 and that is how I woke up every single day for a couple of years. On weekends I would sleep very late. Do a few things and then take a long nap.
So a year and half, feeling desperate: Started approval process again, was approved. Started Xyrem July 2. Slept only about 5 hours but a deep sleep. It's short acting and you have to start low and work your way up to full dose. You take it at bedtime then after at least 2 1/2 hours you wake up on your own and take second dose. When the 2nd dose wore off my eyes popped open and I was awake. No brain fog.
I have not had even 1 nap since July 2! I even started cooking again and started working on a benefit for a friend. Wow! Actually doing something and not napping.--not even thinking of a nap while I had been obsessed by it before.
This week my labs were better. Everything! was better except my thyroid --my thyroid medicine is now too much. I have to reduce the Synthroid because my body is now working better. Since July 2 I've been losing weight. About a pound or two a day recently. Of 34 gained I'm down 21 now! Also, my eye exam last week showed my eyes improved! My next appointment in 2 months will be complete blood work. I'm sure everything I'm taking will have to be reduced!
I feel so much more like my old self! I should have treated the sleep problem first and everything else would have fallen into place or possibly not have been so far off to begin with. Hashimoto's was always there but manageable but stress threw everything off. By not getting restorative sleep I felt like I had a hangover every morning when I had not been drinking.
My advice now is if your doctor thinks you have a sleep disorder LISTEN, have a sleep study and do something about it. I had no idea that being a "light sleeper" would cause such havoc!
My various doctor's over the years would check my thyroid but they never checked my antibodies. I'd never heard of Hashimoto's until my new doctor, after relocating, told me I had it. I told her I didn't know what that is. She replied, "your thyroid like you thought". Wow! Finally I know and I could take a pill and feel better. --Oh no! That is not so.
I was always a very light sleeper even as a young child. So I was just a light sleeper. Years later my husband would say can't you just go to sleep and stay asleep? Like I had a choice! I found that if I moved around it would wake me. So I would barely move and always hated it if anything or anyone woke me up because I would have a terrible time going back to sleep.
I had heard of Narcolepsy and what I had heard is that people would randomly fall asleep. It sounded strange and looked like you fainted.
My doctor thought I was depressed over a HUGE marital issue. I said NO, just very angry! VERY VERY Angry. But I tried antidepressants and nothing changed. So she agreed, not depressed. But she checked my antibodies and told me I had Hashimoto's. My number was 125. They should be 0 and anything else is Hashimoto's. It can go up or down but will not go to 0. Okay, give me meds so I will feel better. But I just got increase after increase and not feeling better. Then my body stopped processing everything correctly. Vit D was low, calcium was not absorbed but rejected, etc. etc. I could not figure out why all of a sudden my body was not handling anything correctly. I developed Osteopenia and then Osteoporosis in my spine. All of this and in early 50's.
All recommended doses had to be increased over and over just to get anything to the normal range. My fatigue was awful. I was working part-time and sleeping more than I was awake every day for years. I needed to work full-time but was terrified that I would not be able to do it. Then the thyroid medications started to work (got up to 112 mg of Synthroid and 5 mg x a day of Citomel) so I could work until 4:30 and nap at 5 until someone woke me up to eat. I would eat a little and go back to bed. If left alone I would just slept, skip eating and still gain weight so why not just sleep? I chose sleep over just about anything else!
My Endocrinologist said he thought there was something else at play. He suggested a sleep study. I didn't want to do it. --I'll never sleep with all the wires attached. I have a friend who works at a sleep lab so I told her I wanted to make an appointment. The Dr. said based on my "light sleep" that he thought the study would be helpful. --I woke up 75 times in 6 hours. (I thought it was 4 times.) He said I was borderline Narcoleptic. No way! I've never randomly fallen asleep. He says there are various levels. But, ok Borderline? No I did not have that! I said it's just my thyroid and when it is better I will not have fatigue.
I gained 34 pounds while eating less calories that what is required to maintain my weight. Thyroid levels finally improved and lost about 15 pounds then nothing.
Sleep doctor says if I will try Xyrem it will help me if I have Narcolepsy and do nothing if I don't. So I got approved and then chickened out. Just need to give my thyroid more time. Every day I thought: I can't get up, then told myself I have to or I'll be late for work. Then thinking if I'm on time I can leave at 4:30 and be home napping by 5:00 and that is how I woke up every single day for a couple of years. On weekends I would sleep very late. Do a few things and then take a long nap.
So a year and half, feeling desperate: Started approval process again, was approved. Started Xyrem July 2. Slept only about 5 hours but a deep sleep. It's short acting and you have to start low and work your way up to full dose. You take it at bedtime then after at least 2 1/2 hours you wake up on your own and take second dose. When the 2nd dose wore off my eyes popped open and I was awake. No brain fog.
I have not had even 1 nap since July 2! I even started cooking again and started working on a benefit for a friend. Wow! Actually doing something and not napping.--not even thinking of a nap while I had been obsessed by it before.
This week my labs were better. Everything! was better except my thyroid --my thyroid medicine is now too much. I have to reduce the Synthroid because my body is now working better. Since July 2 I've been losing weight. About a pound or two a day recently. Of 34 gained I'm down 21 now! Also, my eye exam last week showed my eyes improved! My next appointment in 2 months will be complete blood work. I'm sure everything I'm taking will have to be reduced!
I feel so much more like my old self! I should have treated the sleep problem first and everything else would have fallen into place or possibly not have been so far off to begin with. Hashimoto's was always there but manageable but stress threw everything off. By not getting restorative sleep I felt like I had a hangover every morning when I had not been drinking.
My advice now is if your doctor thinks you have a sleep disorder LISTEN, have a sleep study and do something about it. I had no idea that being a "light sleeper" would cause such havoc!
I could not figure out why I was not responding to any meds like I should. Sleeping all the time but feeling like I hadn't slept for a very long time. I really thought it was the thyroid.
So if your doctor or you suspect you might have a sleep disorder have a sleep study and listen to them. I wish I had listened. I would also recommend a sleep doctor knowledgeable with all treatments including Xyrem. This may possibly have saved my life! I've always heard if you don't get enough sleep it will shorten your life. It should be if you don't have proper restorative sleep it will shorten your life!
My Frees were and still are below 50%, but then again maybe the sleep aspect is now why I can't get them any higher. She told me that lack of restorative sleep was not that big of a deal (?). Yeah, well if it doesn't affect you....
I had told her I had gained weight and she wanted to send me to a Nutritionist.
I didn't trust her...she didn't listen....Will be seeing new doc in 3 wks. We shall see....
Please let me know how it goes worth new doctor.
Now I believe it was the sleep disorder that was the problem. Yes, Hashimoto's was there but it was minor problem that was screwed up due to major stress that caused sleep disorder to wreck havoc with everything!