As my RLS was under pretty good control I decided to see how I would go if I stopped my Tramadol 50-100mg daily, and tried CBD/THC oil instead. The answer was badly. My symptoms came back to the point I barely slept for 6 nights. And of course I also had withdrawal symptoms to deal with. As most of you know it's pretty soul destroying. The oil made no noticeable difference so after 6 days I'm back on Tramadol.
What I wanted to know is if anyone else has researched the link between RLS and elevated TSH (thyroid stimulating hormone) levels. I have Hashimoto syndrome which for me means I'm now classed as having sub clinical hypothyroidism. Over the last 3 years my RLS has worsened in step with my rising TSH levels which according to some research I've read is expected as TSH has a negative effect on dopamine receptors. It's a dopamine antagonist. So I'm thinking if I can find meds to lower my TSH then that may help my RLS. Does anyone have knowledge in this area. I struggle with all the technical jargon 😁 I'll try and attach the articles I found.
I’m a fellow NZer, female, 61. And have had RLS since childhood. I have not previously heard about this connection, but I had noticed that my last thyroid function test showed a slightly elevated TSH at 5. Your post prompted me to look through my records and I note in 2021 my TSH was normal range at 2.7. I was experiencing augmentation durin 2023 and came off dopamine agonists in November 23. My elevated thyroid test was Jan 24.
I have a drs appointment on Tuesday - I think I will ask him to check my levels again.
This is an interesting possible connection. May I ask what your level was?
Hi I have Graves Disease which amongst many other symptoms causes hyperthyroidism (over active thyroid).At times my TSH has been 0 totally undetectable as my thyroid levels were so high I was close to a thyroid storm which can be fatal. In my own experience I didn't get any improvement in my RLS symptoms with zero TSH .
Hi yes I am ok thankyou although I have Graves Disease for life I am currently in remission and have been for several years. I could relapse at any time but so far so good !,
I have subclinical hypothyroidism and also mild RLS. My mother had the same. I don't take any medication for the thyroid issue. However over the past 12 months or so I have been taking supplements as I don't seem to be able to extract sufficient nutriments from my food, despite eating well. I'm not sure whether this is related to the hypothyroidism or not. I take Vit D (3000 IU) with MK7, Vit B9 and Vit B12 and CoQ10. The RLS has improved but I'm not sure which supplement is helping. I also eat liver once a week for the iron content.
It is related to being hypothyroid. Often hypo people do not produce enough stomach acid and so are unable to disgest food properly and get all the nutrients from it.
I hadn't heard that but coincidentally over the last few years as my TSH levels rose I've had a lot more stomach/digestive issues and seem to have difficulty processing some foods that were never previously a problem. Do you have any studies about the issue as I'd be interested to read them
This resembles my experience, I have hypothyroidism and take meds for that - it is simply a thyroid hormone that is given to bring your body’s levels back to normal, then TSH (thyroid stimulating hormone) will typically go back to normal.
I began experiencing substantial digestion and bowel issues at the same time that the symptoms from hypothyroidism began - about three years ago. RLS symptoms did worsen at the same time as well.
I believe there are ties to iron insufficiency with hypothyroidism, another reason to make sure you’re taking care of those levels!
Thanks for that. Sounds very similar to me and this helps me put pieces together and form a long term plan. My iron levels have always been low (my siblings all the same) so I got a iron infusion a year ago and my ferritin is 10 times higher over 300 now but unfortunately that did nothing for my RLS
I see you haven't posted on the RLS forum before so let me give you some advice.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
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 ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
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 or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Since your RLS is mild you probably won't need much.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)
Most of the side effects 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 (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. And I see a number of them on your profile. Since your RLS is still mild you may not need to do anything about them, but let me mention them.
Statins like Atorvastatin make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Clopidogrel a blood thinner makes RLS worse for some. Clonidine is a blood thinner that actually helps RLS.
Your Isosorbide mononitrate is safe for RLS. Your Bisoprolol is probably safe as is your ramipril.
Thanks Sue. Thankfully my RLS isn't so bad that I feel I need medication. I have to take medication for my heart issues so I don't want to take something else if I can avoid it.
The thyroid galnd is linked to so many other organs in the body that its understanding can be a very comlicated issue so I'm not surprised that you find it difficult to understand.
As far as I know there is no direct link between TSH and RLS but inflammation can cause thyriod issues and is a common cause of RLS. Inflammation is commonly caused by eating high carb processsed foods like bread.
Have a look on Yotube for a video by Dr Sten Ekberg called '#1 Absolute Best Way To HEAL Your THYROID'
This was the conclusion from one of the articles I posted
"Serum levels of TSH and the prevalence of subclinical hypothyroidism were higher in RLS patients, indicating the imbalance between thyroid hormones (TH) and the dopaminergic system may contribute to the development of primary RLS."
I have hypothyroidism and for me there appears to be a link between this and RLS.
My RLS goes completely if I add 1mcg of T3 to my T4 medication.
If I get a bout of RLS, I try everything I can think of (I go through the list from Sue), however it seems that it's only the addition of T3 which has consistently made the improvement for me.
I'm sorry, I'm not aware of any studies in this, so can only provide anecdotal.
I'm really loving this information from other sufferers so thanks. Can you tell me what your TSH, T4 and T3 levels are or have been at so I can compare. Trying to build a bigger picture of where I fit in as I am technically have subclinical hypothyroidism where my T4 is still normal but TSH is elevated. I'm not sure they test T3 here in New Zealand.
My last TSH was 0.37 (0.27-4.2). Since the GP was happy they didn't test T4 or T3. As I'm not experiencing any symptoms of being either over or under active, I didn't test privately, so I cannot give you those figures.
The NHS resist testing T4 & T3 in the UK and have only done it for me if I'm out of range. I'd have to test privately when in range. The only way to get T3 prescribed is via a private consultant and beg!
After 10 years of suffering a myriad of symptoms, and becoming pre-diabetic, with high cholesterol, and increasing BP, I decided to take matters into my own hands and tried 1mcg of T3. It was the missing link for me. My Hba1c, cholesterol and BP are all now in normal range. Not just because my medication is right, but because I am well enough to exercise. I run three times a week. This would have been impossible a few years ago, when even walking was sometimes difficult.
I will add, everyone is different, and my levels may not be right for you. Also I've also read on here once that T3 triggered RLS and made it worse for someone else... so again, it's not right for everyone
Thanks for that info. I'm loving the responses and definitely see some potential patterns here. I'm going to try a bunch of different things in isolation the problem is to know if it works I'll have stop tramadol and go through withdrawal each time which is a SOAB. But ultimately worth it for a cure. I'll definitely look into codeine also
It would indeed be amazing if T3 worked for others... the problem will always be getting prescribed it as the medical establishment seem to be very anti T3.
Also, everyone is different, and I've read on here once that T3 triggered RLS and made it worse for someone else... so again, it's not right for everyone
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