Restless Legs Syndrome (RLS) Discussion Board

I woke up twice in the middle of the night feeling like my bed was vibrating. A month later the same thing happened except the feeling was more intense. This was a day or two after I started taking levothyroxine. I wasn’t able to go back to bed. The feeling was a lot more intense and was lasting longer and longer. About two weeks later the vibrating went nonstop for four days. Technically the vibrating started before the levothyroxine but it did feel like the meds made it worse which is what I told my dr. She brushed me off and told me to stay on the meds. She did the typical tests and the only thing that showed up was vitamin d deficiency. The vibrating kept getting worse. I initially only felt it in my right hip and in less than a month I felt it throughout my entire body and there was less and less time where I had a break in symptoms. After seeing an urgent care doc my PCP finally gave me a referral to a movement specialist. The movement specialist spent around 5 minutes talking to me and most of that time she was cutting me off. She said I have RLS and started me on mirapex three times a day. When I went to see another neurologist he disagreed with the diagnosis since I don’t have an urge to move and I am feeling it in my chest, back, and abdomen in addition to my limbs. They did MRIs of my spine and brain which came back normal as well as an EMG which was also normal. I started having a hard time controlling my computer mouse and I’m not sure if that is the mirapex or another symptom. I saw an endocrinologist who took me off the levothyroxine and the vibrating decreased substantially but the endocrinologist said that whatever is wrong with me isn’t being caused by my thyroid. Is this typical of RLS? Does it get that bad that quickly? Does levothyroxine make it worse? I’m not even 30 years old. In less than a month I was experiencing the vibrating feeling for days on end.

This does not sound like RLS. As the second neurologist said, the urge to move is critical as is getting relief from the urge by moving. It does not have to just be in the limbs (I have it in my abs when it is bad). There is not test for RLS, it is diagnosed by a series of questions, which you can see here: http://irlssg.org/diagnostic-criteria. If you feel that you have RLS after seeing the questions, let us know and we can suggest ways to find a doctor who is familiar with treating RLS since your movement disorder neurologist apparently wasn't.

As for the levothyroxine, my GP put me on it about seven years ago because my blood tests were borderline. After about two years, I started getting extremely nervous and a feeling of agitation without any mental reason for being agitated or fearful. I stopped taking levothyroxine and got better. My new GP (I had moved) assumed the first doctor got it right and so he kept testing my thyroid function and it was always good. I never had the severe shaking that you describe, but I was taking the lowest dose, so maybe you were worse than me.

My TSH was only 4.5 and my T4 was 1.0 when they put me on the lowest dose of levothyroxine. My levels tested normal after I started taking it but the vibrating was severe. I did test positive for thyroid antibodies.

I don’t know who to see to get help. I have been passed back and forth between my primary care doc and neurology. They don’t seem to want to help me. I just want to feel better. The mirapex has been helping but it doesn’t stop it and it makes me soooo drowsy. I can’t tolerate a lower dose.

You might want to consider contacting the neurology department at the nearest major medical school, even if it requires some travel. The doctors there are not only going to be more knowledgeable, but also more willing to contact their associates in other departments. It might require a referral from your GP, but the office staff at the university can help you with that.

Agreed with Steve. It definitely doesn't sound like WED/RLS. I am on levothyroxine (have taken the generic and Synthroid) - I haven't had any issues, so far. Neither has my sister (she also has WED/RLS and Hashimotos). BUT - that doesn't mean it didn't bother you.

For the time being, if it were me, I'd stop the levothyroxine. But, I had LOTS of experience stopping things that doctors told me to take and that caused issues for me. I would follow any instructions they give for stopping it (I have no idea what those might be, if any) and see how I felt. Then I'd work on a new neurologist. Over the last 16 years, I've seen at least 15 doctors as many simply couldn't or wouldn't help me. It really sucks - but often is the only route.

I have seen 4 neurologists, 2 endocrinologists, 2 PCP, and a sleep specialist. Once the movement specialist said it was RLS no one will consider anything else. I don’t know who else to go to. Have you heard of anything else like this? Do you know of what’s commonly misdiagnosed as RLS?

LSM wrote: ↑

Thu Jan 28, 2021 1:16 am

I have seen 4 neurologists, 2 endocrinologists, 2 PCP, and a sleep specialist. Once the movement specialist said it was RLS no one will consider anything else. I don’t know who else to go to. Have you heard of anything else like this? Do you know of what’s commonly misdiagnosed as RLS?

How frustrating.

As an aside, and not to freak you out, but more to normalize this, my husband spent over 12 years getting a diagnosis of celiac. It was years ago, before they realized it was as common as it is...but. My best friend had difficult to treat high blood pressure - it took a young, determined GP to realize it was some uncommon issue that they resolved easily.

Some things that are not as common can really take a long time and many docs to see. For similar issues, do a Google search on "RLS differential diagnosis" and see what it says. There are several, IIRC - akathisia, painful legs and moving toes, and a few others. Here is one article with a list.

https://bmcneurol.biomedcentral.com/art ... 8/tables/3

They won’t help me anymore. I honestly don’t even know what happened. I thought I had found a good neurologist who was trying to help but now he won’t treat me anymore. They don’t even try. I have been asking for a referral to an out of network doctor but so far they won’t give me one. I literally don’t know where to go.

LSM wrote: ↑

Sat Jan 30, 2021 2:19 am

They won’t help me anymore. I honestly don’t even know what happened. I thought I had found a good neurologist who was trying to help but now he won’t treat me anymore. They don’t even try. I have been asking for a referral to an out of network doctor but so far they won’t give me one. I literally don’t know where to go.

There is a book called "How Doctors Think." I remember one of the premises in it was that when a doctor cannot easily solve a problem, they pull back and essentially just stop trying. It's related to feeling useless and helpless. Which doesn't help you at all and must be VERY frustrating.

There never is an easy solution in these situations. I take is you have an HMO type insurance and have to have a referral? I remember being in that situation when my RLS/WED was at a terrible level.I called the offices of over 30 doctors and talked to the each doc's nurses to see what they suggested. It might be a way to find a doctor.