Link between thyroid disease and restless legs/... - Thyroid UK

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Link between thyroid disease and restless legs/limbs. whoops sorry this is a duplicate post šŸ™„

smilingjane profile image
ā€¢44 Replies

Hello Thyroid comrades

I am keen to find out whether there is a link between people suffering from hyroid disorders or thyroid breakdown and Restless Legs Syndrome.

I recently became overmedicated with Thyroid meds and I think but am not sure that too much levothyroxin or Liothyronine may have exasperated my RLS.

Anybody out there have the two 'complaints'? I am very keen to hear of others ecperiences and how they have managed their RLS alongside their thyroid disease.

Thank you for reading and I am greatfull for any responses.

Jane šŸ˜Š

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smilingjane profile image
smilingjane
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SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking

Can see you self inject B12

Are you currently taking magnesium, vitamin D, vitamin B complex?

Please add exactly what vitamin supplements you are taking

When were folate, ferritin and full iron panel test and, vitamin D last tested

Low magnesium and/or low iron/ferritin often linked to Restless legs

Please add most recent results and ranges

As you have Hashimotoā€™s are you on strictly gluten free diet

If not, get coeliac blood test done BEFORE considering 3-6 months trial gluten free

smilingjane profile image
smilingjaneā€¢ in reply toSlowDragon

Hello SDThanks for getting back

I take Magnesiun, Selenium, (the one that absorbs properly) Thorne basic B vits, D3 and K2 and B12 SI weekly. And Q10. Snd Vit C 1000mgs.

My ferritin is good. (forget what) - folate good too and Vit D. Iron okay too. The only iron test I haven't had is the brain blood barrier one. Tests taken end of Jan.

No alcohol, cigarettes or caffeine.

Gluten free diet followed and dairy free.

Had RLS since teenager and got worse with pregnancy and menapause.

My question is does anyone out there know of a link in med doses for thyroid and increased RLS?

Will_blue profile image
Will_blueā€¢ in reply tosmilingjane

Hi - not sure of a link but I am a lifelong sufferer of RLS (since childhood) and was diagnosed with UAT @ 55. Supplementing with magnesium citrate seems to have helped to calm the RLS slightly but still get it.

smilingjane profile image
smilingjaneā€¢ in reply toWill_blue

Thanks for getting back. I take Mag twice daily. Forever hopefull but no diferrence so far :( Pleased you have some help.šŸ˜š

lidoplace profile image
lidoplace

I used to get it after starting Levothyroxine. Have not experienced since stopping T4 only and using NDT for 6 years now after 15 on T4 only. Could be a coincidence but such a relief along with many other improvements.

smilingjane profile image
smilingjaneā€¢ in reply tolidoplace

That is intetesting. Can endos prescribe NDT?

šŸ˜Š

helvella profile image
helvellaAdministratorā€¢ in reply tosmilingjane

Legally, yes.

But the organisation they work for, or report to, might have rules which preclude them doing so.

smilingjane profile image
smilingjaneā€¢ in reply tohelvella

Oh :(

smilingjane profile image
smilingjaneā€¢ in reply tohelvella

Do you or anybody else know of an endocronologist in the UK that prescribes NDT?šŸ¤”

helvella profile image
helvellaAdministratorā€¢ in reply tosmilingjane

Have you contacted Thyroid UK for their lists?

thyroiduk.org/about-thyroid...

I think you need to ask endos.

I don't know any, I'm afraid.

smilingjane profile image
smilingjaneā€¢ in reply tohelvella

Thank you HelvellaI will contact TUK

šŸ˜Š

bluejourney profile image
bluejourney

Iā€™ve had RLS for years, mainly the left leg, nearly always at night, and sometimes lasting hours, so it can make it impossible to sleep. Itā€™s like being tortured. Mine has improved a lot with an increase in Levothyroxine. I think it worsens when things get out of balance, either too much or too little, in terms of thyroxine, salt, iron, cortisol, or when youā€™ve eaten food that is affecting you, so it really helps when things are in balance. I also find itā€™s linked to circulation, so I find what usually works for me when I get it, is sticking my leg in the air, which helps the blood flow downwards, and massaging the leg firmly downwards towards the torso. I also observe where in the leg itā€™s worse - the thigh or the calf -and concentrate the massage on that area. Iā€™ve also found that it helps to massage it as soon as you notice it - it often seems to get worse the longer you leave it. It this doesnā€™t work the first time, I do it again. And again. Eventually it works. Luckily my other half can sleep for England, so is undisturbed by it all! Iā€™ve also heard that massaging certain pressure points on the sole of your foot can help, but Iā€™m not sure about that, and also the doctor can prescribe you medication, though again, Iā€™ve not gone down that route. I do sympathise with your problem, and hope you soon find a solution that works for you.

smilingjane profile image
smilingjaneā€¢ in reply tobluejourney

Thanks Blue journey.I have medicationfor RLS. I have tried practically everything over the last 30 years and now my condition is with me 24/7, and without meds is torture.

I am trying to get my thyroid meds balanced and hoping that will enable me to reduce my RLS meds. You never know!

šŸ˜Š

Heloise profile image
Heloise

I did not connect restless legs very uncomfortable symptom with overdosing but I did find that a simple calcium/magnesium supplement at bedtime very relieving, even the cheaper oxide versions.

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

Thanks for that Heloise.I take that but it makes not a hoot of difference for me.

Pleased it works for you though. I used to have RL for a couple or so hours every night. That was manageable.

Now however I have it 24/7 and in my arms.

Only the hard stuff works now šŸ¤”

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

The reason it worked is that they relaxed the nerves. Does the hard core mean gabapentin? Have you tried Gaba, etc. Dopamine and cortisol can be problems. One other supplement if you can't calm things down is p e a (palmitoylethanolamide). Of course nothing works for everyone. Best wishes!

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

No, the hard core is Oxycodone alongside, (currently trialing, Perampanel) - all going well so far.Oxycodone works well alone but I want to reduce the dose and Parampanel is a newly trialed drug which has proved effective in 1 open trial.

The idea being that if it works, I can stop the Oxycodone.

šŸ¤ž

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

I haven't heard of palmitoylethanolamide before. I will research.šŸ˜Š

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

I was going to say that supplements that target the problem are much safer in the long run. You can always go to a pharmaceutical. I no longer have restless legs but at the time, anything acidic like lemonade or wine aggravated it. Bitter greens often helped for some reason.

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

They are indeed I have tried almost everything over the years. Cut out sugar, alcohol, and much more. Tried all the usual RSL drugs.

With sevear RLS, the torture as you know is unbareable.

I am so thankful that I have a GP that would prescribe an opiod. For many people that is the only thing that works.

šŸ˜Š

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

My chiropractor was afflicted and felt his genetics made it much more severe. I suggested LDN back then but really wasn't certain it could help. I even had a nerve test because of the burning as well but they could only test the slow twitch nerves and those aren't the ones involved I guess. I'm really sorry that some of these symptoms are so stubborn. I think many are related to the vagus nerve and even brain inflammation can be involved. There have been many discoveries regarding the immune system and inflammation. Have you tried a food sensitivity test? That can tell you what might cause some of the inflammation and also whatever you can learn about the microbiome is essential.

smilingjane profile image
smilingjane

No I havent tried a food sensitivity test yet. it's something I've been meaning to do for a while. I am intolorant to several foods. I am never sure which test to take. I have heard that some are not very reliable.

I will look onto the microbiome. Its all so complex and I have very little energy. I am pretty much bed bound atm. I have had cronic fatigue for the last 3 years. Before that I was very active.

I think the best thing for me may be to see a functional medic, one that does all the tests to save me doing the research. Helvella sent me the link to 'Thyroid friendly' doctors. I think that may be my next move.

In fact. I think I will post a query on this site tonight to see if there are any recomendations for Thyroid disease.

I am lucky enough to have an excellent Nuerologist that is helping me with RLS.

Thank you so much for all of your advice and experience.

šŸ˜Š

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

Oh my, yes, it's probably wise to find someone who will try to find the causes behind your symptoms. There are many excellent research/functional doctors who develop their own formulas. I've been on TUK for many years and gained a lot of information but at this point I realized it is far more efficient to have functional testing to investigate your nutritional status and any infections that show up. Of course, much of this is not covered by insurance which is depressing when they can be so valuable. An organic acids test could be revealing.

Are you sure that you are being over medicated? If you can get your free t3 in a good range and get the cells working down to the mitochondria you have a better chance of healing. It's fairly complex though and your doctor has to be aware of many aspects of an autoimmune condition and there are things you should not try yourself like a heavy metal detox. Not saying you have any of the above but good doctors should be aware of the gut/brain/immune connection.

I am so sorry you are feeling so poorly. I'll have a look at your profile.

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

Thank you Heloise.You are very knowledgable. The problem is when choising a functional medic is who to choose.

I really need some good recomendations. I have the TUK list but still .... looking at it I feel completely lost as to who would be best for me.

Also how do I know if the cells are working down to the mitricobdria? How do I know my thyroxin is actually reaching my cells?

Its all so confusing.

Thats why I need a recommendation of a good functional medic/practice.

šŸ¤”

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

I know and the more I've learned the less I understand and it is a real dilemma to find someone locally. Actually, the experts who have put on video summits will often take on patients from all over the world. Some offer their own programs. You should probably gain a little knowledge about the process. Are you feeling up to watching or listening? Some of them are on You Tube. I could pm a list of some of them if you want to see if this could help you make more informed decisions.

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

That would be very helpfull.Thank you šŸ˜Š

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

I should have checked your earlier posts and you surely have suffered! If you can afford a functional doctor even though your specialists are quite good they do not center on the body's own mechanisms. Your adrenal glands are put to the test when your thyroid is struggling and need to take over metabolism in some cases. Your adrenal gland uses a larger supply of cholesterol AND progesterone to do some of it. Are you taking anything that would reduce either one?Your very high T3 after two days without dosing is very puzzling. After two days half of it should have dissipated.

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

I was takung estrogen (topical) and progesteton, but stopped a month or two before the high T3 and body tremors.That would have brought my tesults up.

Also I started taking high dose vit c with my daily thyroid meds 2 months ago.

I read that would enable my meds to work more effectively, (Sinon Pearce, endo).

I have been advised by my current endo to stop the T3 and carry on with 100mcgs Levo daily until our next appointment, (4 weeks).

I have no energy at all and am now getting hot all body flushes. I am 63 so its not menapause. I do feel its to do with hormones though.

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

Sometimes tremors are due to your adrenal output of epinephrine. The most recent series I watched was very, very enlightening by Peter Kan. He said if anything is going to start to heal it begins with perfusion which is your circulation. That's how nutrients get into cells. Cell receptors have to be open which is another factor.

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

A gp I saw when having the tremors suggested it was caused by stress? It was when I saw my t3 test results I assumed that high T3 was the cause.

I suppose it may have been stress though.

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

Well, stress usually means high cortisol from your adrenal glands. It's fight or flight or freeze (new term). If you can reduce that in any way, it's good. Your sensory nerves can start that process but so can anything that causes your immune system to react.

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

No, not really T3 directly. Did you have palpitations?

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

No, I didn't have palputations. just whole body tremors. It went on for over 36 hours without stopping. I was unable to lie down. It was similar to restless limbs in that way.I still don't really know the cause.

šŸ¤”

Heloise profile image
Heloiseā€¢ in reply tosmilingjane

Dr. Bergman is a brilliant guy and if you have time he always does well explaining why the body does what it does because the body will adapt to whatever is happening which is usually a chemical, emotional stress. Your adrenals react after the hypothalamus senses the problem. Those tremors are a reaction to something. youtube.com/watch?v=fKQfm42...

smilingjane profile image
smilingjaneā€¢ in reply toHeloise

Just checked my bio and see it needs bringing up to date.I will do that soon..

Thanks for the nudge šŸ˜‰

greygoose profile image
greygoose

My RLS is worse when my iron is low. I've suffered with it since my second pregnancy, I've been hypo since I was about 8 years old, diagnosed at 55. So, I don't think - for me at any rate - there is a direct link between RLS and hypo, except that being hypos causes my iron to be low. No connection at all between RLS and levo.

smilingjane profile image
smilingjaneā€¢ in reply togreygoose

Thanks Greygoose.I thought I had responded to your message but I cant find it!

Just to say, How does being hypo cause your iron to be low?

šŸ¤”

greygoose profile image
greygooseā€¢ in reply tosmilingjane

When you're hypo you usually have low stomach acid, which makes digesting food and absorbing nutrients difficult.

smilingjane profile image
smilingjaneā€¢ in reply togreygoose

Do you know why this is?šŸ¤”

greygoose profile image
greygooseā€¢ in reply tosmilingjane

Why stomach acid is low? Because you need optimal levels of T3 to produce stomach acid. Plus, it's a vicious circle, low stomach acid means low levels of B12 and low levels of B12 lowers stomach acid.

smilingjane profile image
smilingjaneā€¢ in reply togreygoose

I S. Iinject B12. Does that mean my stomach acid is ok?

greygoose profile image
greygooseā€¢ in reply tosmilingjane

Not necessarily, no. You'd have to have some kind of a test to find out.

smilingjane profile image
smilingjaneā€¢ in reply togreygoose

Right okayThank you greygoose

greygoose profile image
greygooseā€¢ in reply tosmilingjane

You're welcome. :)

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