Hey guys.
I wanted to know if anyone else had a thyroid disorder and also has RLS? I had cancer when I was about 9, and have been in remission for a while. (i'm 20 now) Anyways, out of the whole ordeal, I developed an underactive thyroid, and was prescribed synthroid for it.
I discovered on one webpage that a thyroid disorder is a secondary cause of RLS. I've dealt with RLS for about 4 years if I remember right, alhtough my memory is a bit messed up. What I want to know, if a thyroid disorder is a secondary cause, why does my medication for my thyroid not affect my RLS?
I'm getting fed up with this. I'm fairly certain I have a serious case, it's been rather painful on at least 6 seperate occasions that I can recall. The worst episode I ever had was actually on Mother's Day of this year. The pain lasted for hours and I couldn't do anything about it.
Anyways, would look forward to some input.
RLS possibly related to thyroid disorder?
Hi, Scorpio--
Sorry you're having a tough time. I was just reading some information about RLS in an article a friend sent me, and it was saying how in the early morning RLS patients' symptoms go away and they can sleep.... YEAH, RIGHT!
My RLS is worse this morning than it was at bedtime. It's a frustrating syndrome, because we don't all seem to present with the same symptoms and patterns, and what works for one (or for a short time) doesn't seem to work for everyone.
The same with exacerbating factors, I'm guessing. One of our newer members (I apologize if she's reading this, for forgetting which one
) started a thread about two weeks ago asking how many of us had underactive thyroids and/or were overweight. Quite a number of us do, but then again, quite a number of us are females over 35... and from my research, it sounds like a LOT of women over 35 have underactive thyroids, even though most of us test "within the normal range" on the standard test most docs give so that they can tell us, "No, it's not your thyroid, you are just eating too much." 
Anyway, I'm not making light of your issue, Scorpio. CONGRATULATIONS on your cancer remission, and I wish you well. You've been through a lot for a 20 year old.
A lot of us with "genetic" RLS (family history of it, not caused by an injury or medication) noticed symptoms in our teens.... but there are hormonal changes in those years that also affect our thyroid function. Puberty, onset of sexual relations, pregnancy and childbirth, and menopause are all life events that can put our thyroids into a (sometimes permanent) stall. Sometimes it's severe enough to get a doc to prescribe medication; sometimes it's only enough to make us generally unhealthy and uncomfortable, unfortunately.
I think I'm personally in the latter category. I BELIEVE that my thyroid is NOT functioning properly anymore. YES, I do eat too much and exercise too little, but I also have almost two dozen other symptoms of low thyroid function. I'm currently doing some non-pharmaceutical supplements to try and boost my thyroid function, and I'll be curious to see if it helps my RLS at all or not.
My point being that there are many symptoms that can indicate low thyroid that also can be attributed to other diseases/lifestyle issues, and I think that often they are attributed to those instead of thyroid. I also believe the research I've read that indicates that low thyroid is seriously under-diagnosed.
The problem is that none of our health symptoms "occur in a vacuum" if you know what I mean. So, I see a lot of discussion here about the relations between RLS and other conditions, but it seems to me that we really don't KNOW a lot about "which came first" in many cases. I believe my RLS is genetic, but I also believe that low thyroid function runs in my family. Does that make them connected. Hmmmmmm... I don't know.
A lot of RLS sufferers have anxiety or depression, too... does that mean that there's a systemic "problem" with our brain/body chemicals (which I believe to be the case for me), or is it just because having a chronic lifestyle-altering condition (especially if it's accompanied by sleeplessness) can freak and/or bum you out? I don't know.
I think that your question is an excellent one, and I LOVE to see folks here post such things, think about them, survey other members about them, etc. The doctors don't seem to be doing allllllllllllllllll that well figuring this out. Maybe those of us who HAVE it can put the pieces together better???? I'm willing to bash the subject about and see what we can come up with.
I do want to perhaps give you a bit of hope. My worst RLS in my younger life was once when I had the flu at 18. I had some really bad episodes and periods of it through my 20s, too, but I didn't know what it was (thought it was "just me" not a "real syndrome"). I didn't start having real "life-altering" trouble with RLS until just a couple of years ago (I'm almost 40 now). Most of the time I have RLS every day, and sometimes it's 24/7. But although it's obviously "progressed" as I've aged, it hasn't always "gotten worse and stayed worse".
SO, I will HOPE for you that you have a similar progression, with periods of much less severe troubles than you're having now. I know a number of other people my age with RLS who had times along the way where theirs was better and worse, not just steadily worse all the time. And now you have US here, for what we're worth. At the very least, we understand how you feel!
Hang in there.... and I hope that more people will weigh in on the thyroid question again. It's an interesting theory/connection.
Take care. Sara
Sorry you're having a tough time. I was just reading some information about RLS in an article a friend sent me, and it was saying how in the early morning RLS patients' symptoms go away and they can sleep.... YEAH, RIGHT!
My RLS is worse this morning than it was at bedtime. It's a frustrating syndrome, because we don't all seem to present with the same symptoms and patterns, and what works for one (or for a short time) doesn't seem to work for everyone.
The same with exacerbating factors, I'm guessing. One of our newer members (I apologize if she's reading this, for forgetting which one
) started a thread about two weeks ago asking how many of us had underactive thyroids and/or were overweight. Quite a number of us do, but then again, quite a number of us are females over 35... and from my research, it sounds like a LOT of women over 35 have underactive thyroids, even though most of us test "within the normal range" on the standard test most docs give so that they can tell us, "No, it's not your thyroid, you are just eating too much."
Anyway, I'm not making light of your issue, Scorpio. CONGRATULATIONS on your cancer remission, and I wish you well. You've been through a lot for a 20 year old.
A lot of us with "genetic" RLS (family history of it, not caused by an injury or medication) noticed symptoms in our teens.... but there are hormonal changes in those years that also affect our thyroid function. Puberty, onset of sexual relations, pregnancy and childbirth, and menopause are all life events that can put our thyroids into a (sometimes permanent) stall. Sometimes it's severe enough to get a doc to prescribe medication; sometimes it's only enough to make us generally unhealthy and uncomfortable, unfortunately.
I think I'm personally in the latter category. I BELIEVE that my thyroid is NOT functioning properly anymore. YES, I do eat too much and exercise too little, but I also have almost two dozen other symptoms of low thyroid function. I'm currently doing some non-pharmaceutical supplements to try and boost my thyroid function, and I'll be curious to see if it helps my RLS at all or not.
My point being that there are many symptoms that can indicate low thyroid that also can be attributed to other diseases/lifestyle issues, and I think that often they are attributed to those instead of thyroid. I also believe the research I've read that indicates that low thyroid is seriously under-diagnosed.
The problem is that none of our health symptoms "occur in a vacuum" if you know what I mean. So, I see a lot of discussion here about the relations between RLS and other conditions, but it seems to me that we really don't KNOW a lot about "which came first" in many cases. I believe my RLS is genetic, but I also believe that low thyroid function runs in my family. Does that make them connected. Hmmmmmm... I don't know.
A lot of RLS sufferers have anxiety or depression, too... does that mean that there's a systemic "problem" with our brain/body chemicals (which I believe to be the case for me), or is it just because having a chronic lifestyle-altering condition (especially if it's accompanied by sleeplessness) can freak and/or bum you out? I don't know.
I think that your question is an excellent one, and I LOVE to see folks here post such things, think about them, survey other members about them, etc. The doctors don't seem to be doing allllllllllllllllll that well figuring this out. Maybe those of us who HAVE it can put the pieces together better???? I'm willing to bash the subject about and see what we can come up with.
I do want to perhaps give you a bit of hope. My worst RLS in my younger life was once when I had the flu at 18. I had some really bad episodes and periods of it through my 20s, too, but I didn't know what it was (thought it was "just me" not a "real syndrome"). I didn't start having real "life-altering" trouble with RLS until just a couple of years ago (I'm almost 40 now). Most of the time I have RLS every day, and sometimes it's 24/7. But although it's obviously "progressed" as I've aged, it hasn't always "gotten worse and stayed worse".
SO, I will HOPE for you that you have a similar progression, with periods of much less severe troubles than you're having now. I know a number of other people my age with RLS who had times along the way where theirs was better and worse, not just steadily worse all the time. And now you have US here, for what we're worth.
At the very least, we understand how you feel!
Hang in there.... and I hope that more people will weigh in on the thyroid question again. It's an interesting theory/connection.
Take care. Sara
VERRRRRRRRRYYYYY INTERESTING!
It's Jan
I just saw this thread, and I just had to add something. You know me!
I thought the part about hypothyroidism was so interesting, Sara. I agree that there might be something to that whole thing!
You know I've just had blood tests and they are one of the many things they are testing is my thyroid, blah, blah, blah. Well, the symptoms for hypothyroidism are: overweight, forgetfulness, mild depression, little energy, sleeplessness, low BP, low temp (97.6), FIBROMYALGIA, joint stiffness, swelling of ankless and feet, among several other things, dry skin, all of which I have had or am experiencing right now.
I'm not diagnosing my own case, I want to emphasize that STRONGLY. But, I do find this all so very interesting. I fully intend to let my do his job (which I think HE is highly qualified to do--I have all of the confidence in the world in him).
I just think this is so interesting. I have had my thryroid checked before, but some blood tests are more comprehensive than others. Just thought I'd add my two cents' worth.
Hugs
Jannie
I just saw this thread, and I just had to add something. You know me!
I thought the part about hypothyroidism was so interesting, Sara. I agree that there might be something to that whole thing!
You know I've just had blood tests and they are one of the many things they are testing is my thyroid, blah, blah, blah. Well, the symptoms for hypothyroidism are: overweight, forgetfulness, mild depression, little energy, sleeplessness, low BP, low temp (97.6), FIBROMYALGIA, joint stiffness, swelling of ankless and feet, among several other things, dry skin, all of which I have had or am experiencing right now.
I'm not diagnosing my own case, I want to emphasize that STRONGLY. But, I do find this all so very interesting. I fully intend to let my do his job (which I think HE is highly qualified to do--I have all of the confidence in the world in him).
I just think this is so interesting. I have had my thryroid checked before, but some blood tests are more comprehensive than others. Just thought I'd add my two cents' worth.
Hugs
Jannie
No one is alone who had friends.
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Penguinrocks
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Well, it's good to see input on this subject. The fact of the matter is that there is just too little research being done about this sort of thing.
Now, one thing I do want to interate on, is the fact that I was diagnosed as having an underactive thyroid, However I am not overweight, in fact far from it. Instead of gaining wieght easily, I LOSE wieght easily. The last time I weighed myself I was about 109lbs. This leaves me with questions about the exact nature of my thyroid condition, because I was diagnosed as having Hypothyroidism, yet I did a search, and found that I have symptoms from both Hypo and Hyperthyroidism, which is impossible if I am doing my homework correctly.
The genetic factor you brought up Sara is an interesting one, my mother claims to have had RLS when she was younger, so that could be another lead to mine, however at this point I am just not sure.
I have an upcoming doctor's appointment at St. Judes Research Hospital in Memphis (This is the hospital I was treated for cancer at, and they fly me back every so often for checkups.) I plan to ask my doctor there about RLS and my thyroid condition, and see if she can't shed some light on it for me, although I'm not getting my hopes up. I'll keep you guys informed once I get back.
Now, one thing I do want to interate on, is the fact that I was diagnosed as having an underactive thyroid, However I am not overweight, in fact far from it. Instead of gaining wieght easily, I LOSE wieght easily. The last time I weighed myself I was about 109lbs. This leaves me with questions about the exact nature of my thyroid condition, because I was diagnosed as having Hypothyroidism, yet I did a search, and found that I have symptoms from both Hypo and Hyperthyroidism, which is impossible if I am doing my homework correctly.
The genetic factor you brought up Sara is an interesting one, my mother claims to have had RLS when she was younger, so that could be another lead to mine, however at this point I am just not sure.
I have an upcoming doctor's appointment at St. Judes Research Hospital in Memphis (This is the hospital I was treated for cancer at, and they fly me back every so often for checkups.) I plan to ask my doctor there about RLS and my thyroid condition, and see if she can't shed some light on it for me, although I'm not getting my hopes up. I'll keep you guys informed once I get back.
Hi, It's Jan replying for Sara
Hi, Sara is having trouble with her dial-up and she emailed me and asked me to ask you the following:
"Just ask Scorpio for me if she's ever heard of Hashimoto's disease or thyroiditis. It has some of the low thyroid symptoms like exhaustion, but some of the high thyroid things like being thin. It's a little different condition than either hypo or hyper... I THINK that you're actually almost "allergic" to your own thyroid. And it needs to be treated because over time it can damage your thyroid.
Also (and maybe connected, the two diseases) I wondered if she'd been tested for adrenal function. My friend with Hashimoto's also has a specific problem with her adrenals.
Tell her I said "hi", too. : ) "
Jan
"Just ask Scorpio for me if she's ever heard of Hashimoto's disease or thyroiditis. It has some of the low thyroid symptoms like exhaustion, but some of the high thyroid things like being thin. It's a little different condition than either hypo or hyper... I THINK that you're actually almost "allergic" to your own thyroid. And it needs to be treated because over time it can damage your thyroid.
Also (and maybe connected, the two diseases) I wondered if she'd been tested for adrenal function. My friend with Hashimoto's also has a specific problem with her adrenals.
Tell her I said "hi", too. : ) "
Jan
No one is alone who had friends.
Interesting point. Being that I am rather deeply involved with anything of Japanese origin, I should know of Hashimoto's disease. I'll do some research and see if my symptoms match up.
By the way, Sara, I'm not female, just so you know. I'm 100% male. My real name is Douglas (Doug), I'm 20 from Oklahoma City. The nickname Scorpio comes from my zodiac sign. I should have specified I guess, so don't worry about the mistake, is my fault.
And no, I do not believe that my adrenals have been tested. I'll have to look into that when I visit my doctor in Memphis this week.
By the way, Sara, I'm not female, just so you know. I'm 100% male. My real name is Douglas (Doug), I'm 20 from Oklahoma City. The nickname Scorpio comes from my zodiac sign. I should have specified I guess, so don't worry about the mistake, is my fault.
And no, I do not believe that my adrenals have been tested. I'll have to look into that when I visit my doctor in Memphis this week.
Hi, Doug--
Finally got back on the forum.
I'm quite fond of Okies (and related to several), so glad to "meet" you. And you're just as welcome male as female, but that's interesting, because I THINK I have read that thyroid problems present somewhat differently in guys. That might account for some of the things that don't seem like what women with hypothyroid have. But it might at least be worth finding out more about Hashimoto's, because it's a bit different.
And adrenal problems are something that naturopathic docs seem to pay more attention to than conventional docs, but they CAN cause quite an impressive list of symptoms including sleep problems, energy problems, migraines, low immunity, etc.
Being that you said you're interested in all things Japanese, ironically I read that Japanese accupuncture (but not Chinese) actually is used to treat the thyroid directly. If you ever had access to a Japanese accupuncturist, it might be worth a try. Not sure if you believe in alternative medicine, but thought I'd pass that on.
Hard to think you're so young and have been through so much medically already. But you obviously have grit and gumption. Hang in there.
Sara
Finally got back on the forum.
I'm quite fond of Okies (and related to several), so glad to "meet" you. And you're just as welcome male as female,
but that's interesting, because I THINK I have read that thyroid problems present somewhat differently in guys. That might account for some of the things that don't seem like what women with hypothyroid have. But it might at least be worth finding out more about Hashimoto's, because it's a bit different.
And adrenal problems are something that naturopathic docs seem to pay more attention to than conventional docs, but they CAN cause quite an impressive list of symptoms including sleep problems, energy problems, migraines, low immunity, etc.
Being that you said you're interested in all things Japanese, ironically I read that Japanese accupuncture (but not Chinese) actually is used to treat the thyroid directly. If you ever had access to a Japanese accupuncturist, it might be worth a try. Not sure if you believe in alternative medicine, but thought I'd pass that on.
Hard to think you're so young and have been through so much medically already. But you obviously have grit and gumption.
Hang in there.
Sara
Well, thanks for that.
Hashimoto's does seem to affect more women than men, but hey, I might just be one of the 'lucky' ones.
When I was first diagnosed with cancer, I had already had it for 2 years, they merely misdiagnosed me with 'cat scratch fever' and allowed the lymphatic nodes in my neck to keep bulging. Finally they found it, and I was in the final stage of it (I had hodgkins lymphoma, just to clarify.) They had to perform a biopsy on the lymph node that was bulging and take about 55% of it out. They told my parents that if they had gotten me in just a half hour later, the node would have sufficated me.
For chemotherapy treatment, they put what's called an 'infusaport' into my chest. It's a small button like device with a tube leading to the main artery in my heart. Before my treatment was complete, my body rejected it and was pushing it out through my skin, so they had to remove it early.
Pain in the butt royally going through all that, but hey, I'm here now, and that's all that matters!
Hashimoto's does seem to affect more women than men, but hey, I might just be one of the 'lucky' ones.
When I was first diagnosed with cancer, I had already had it for 2 years, they merely misdiagnosed me with 'cat scratch fever' and allowed the lymphatic nodes in my neck to keep bulging. Finally they found it, and I was in the final stage of it (I had hodgkins lymphoma, just to clarify.) They had to perform a biopsy on the lymph node that was bulging and take about 55% of it out. They told my parents that if they had gotten me in just a half hour later, the node would have sufficated me.
For chemotherapy treatment, they put what's called an 'infusaport' into my chest. It's a small button like device with a tube leading to the main artery in my heart. Before my treatment was complete, my body rejected it and was pushing it out through my skin, so they had to remove it early.
Pain in the butt royally going through all that, but hey, I'm here now, and that's all that matters!
Struggling is a sign that you have not yet given up.