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Restless Legs Syndrome

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LuvtheLyricist profile image
6 Replies

Has anyone been diagnosed with RLS because they are taking Levothyroxine? If so, is there any solution to this?

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LuvtheLyricist profile image
LuvtheLyricist
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6 Replies
Joolsg profile image
Joolsg

There are many reports on Health Unlocked thyroid forum and this forum about synthetic levothyroxine triggering RLS.Has it only just started?

If you have just started levothyroxine and never had RLS before, it could be the medication. Some people mention changing brands has caused RLS so it may be the filler in the meds.

However, hypothyroidism is linked to RLS so it may be coincidental that you are showing signs of RLS at the same time as hypothyroidism.

I suggest you look at recent blood tests ( or get new ones) and ensure serum ferritin is above 100, preferably 200 and serum iron above 60.

Also let us know all medications you're currently taking as many trigger RLS. The most common triggers are anti depressants, anti histamines, high blood pressure meds, statins, beta blockers and PPIs.

LuvtheLyricist profile image
LuvtheLyricist in reply toJoolsg

Thank you so much! Appointment with doc is in the works. I am keeping my fingers crossed that she supports this and doesn’t pass it off as insignificant!

LuvtheLyricist profile image
LuvtheLyricist in reply toJoolsg

Also, to answer your question…I’ve been on Levothyroxine well over a year. Nearing 2 years. I am also on Lisinopril for high BP. The mg’s for the BP med is 10. I experienced RLS last year for awhile. And it went away but i dont know why it went away. I was having some issues with vitamin D levels and thyroid levels all over the place. And at one point my iron was horribly low due to my menstrual cycle continuing for an almost 3 months straight. I was given an IUD for that as it provides a small dosage of progesterone and the IUD seemed to control the issue i was having. My mg for the Levothyroxine is 88 mg which is the highest i have taken. We couldn’t get it under control. I am also 50 and pre-menopausal and do not know if that plays a factor at all in any of this.

Once again, thank you so much for your response. I am so happy to have something i can bring with me to my doc appointment.

Smile

in reply toLuvtheLyricist

Could the IUD be causing the RLS? For many, HRT is a big no. It is for me. After a few days on topical progesterone my RLS is noticeably worse.

SueJohnson profile image
SueJohnson

Levothyroxine is known to make RLS worse but does not cause RLS. You probably had RLS that was dormant and the Levothyroxine triggered your symptoms. Since you need the Levothyroxine, you need to treat the RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." You probably won't need nearly that much as your RLS was dormant. If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://mayoclinicproceedings.org/a...

LuvtheLyricist profile image
LuvtheLyricist in reply toSueJohnson

Thank you so much for this detailed response. I am so grateful! I am going to schedule an appointment today! Have a wonderful Wednesday!

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