Thyroid trouble and restless legs: Hi everyone... - Thyroid UK

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Thyroid trouble and restless legs

janland profile image
16 Replies

Hi everyone....

Could anyone tell me if the above 2 are linked?

I think it might be something to do with circadian rhythm..?

As restless jerky electric legs most nights..

I was thinking I might be taking too much levothyroxine..100 mg..so I reduced it to 75 mg.... and now I'm just taking one tablet every other day..

Blood test due later this month..

I've had hypothyroidism for at least 20 years.... and restless legs about same amount of time..

I did read recently that restless legs could be connected to thyroid troubles...

Has any other readers had similar experiences... and what are anyone's thoughts on this..?

Thank you

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janland
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

More likely due to being under medicated, especially if you are now only taking 75mcg levothyroxine every other day

Restless legs is frequently linked to low magnesium and/or low iron/ferritin......both are EXTREMELY common when hypothyroid

Strongly recommend you go back on 75mcg everyday and after minimum of 6-8 weeks get thyroid AND VITAMIN levels tested

So delay your booked test

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels NOW

Vitamin D, folate, ferritin and B12

When you get thyroid tested in 6-8 weeks

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

humanbean profile image
humanbean

I think the most common causes of restless legs and cramp are nutrient deficiencies, but thyroid disease can make the conditions worse.

I keep my own restless legs and cramp at bay by keeping my iron and ferritin optimal (or as close to it as I can manage), and by taking magnesium supplements.

I also keep potassium bicarbonate in stock for when all else fails, but I only use a low dose and then only when necessary. Salt sometimes helps too.

Jacs profile image
Jacs

I have found liberal application of magnesium oil from Ancient Minerals plus Magnesium supplement from Regennus which includes 3 different types of bioavailable magnesium have really helped me

janland profile image
janland in reply toJacs

Thank you for reply..I do have a magnesium gel for legs plus 5HTp with magnesium which I take at night if restless legs are unbearable..

Try not to make habit of it.

I think I eat fairly well...but as we get older we don't assimilate our vitamins so well do we?

NWA6 profile image
NWA6 in reply tojanland

I’m always interested when people say ‘I try not to make a habit of it’ can I ask, if it helps then why think this way?

I would say that if you find something that works then utilise it but not just if it’s unbearable, don’t let it get to that stage.

Personally my RLS eased when I was optimally treated, I also found good relief with magnesium oil while on my way to being optimal.

janland profile image
janland in reply toNWA6

Oh yes..a good way to look at it..But what do you mean re "optimally treated"?

My gp tells me not to drink caffeinated coffee... well I don't and to take medication which could cause augmentation...I really don't want to start that..

There's a cause for restless legs and I thought it might be thyroid levels...not had a blood test for that for about 2 years..

Also I take lots of vitamins and supplements which I think might even cause restless legs..?

Or interfere with neurological system.. especially if the vitamins have lots of "other" ingredients like they seem to have..?

NWA6 profile image
NWA6 in reply tojanland

Most of us are treated in one way or another for our thyriod conditions. For the vast majority that’s with Levothyroxine and that works perfectly fine. But for some of us (and there’s over 100,000 on this forum alone) that method simple isn’t good enough, we’re alive and we can function (to some degree or not) but we’re not optimal. We use the term optimal because there isn’t a one size fits all approach to treatment (well there is and it’s alive and well with the NHS, they think that everyone who has blood test ‘in range’ are being well treated).

We are all so unique and individual that blood tests should only be used as a guide to wellness along with ‘how do you feel?’, when you combine these two then you often reach YOUR dose of replacement hormone along with Vits and Minerals.

I was on Levo alone for years but never felt fully well, RLS was a symptom of that too.

For some it could be that they are not on a high enough dose of Levo, for some they can’t tolerate Levo. For some they do better on NDT and for others like me who can’t convert the Levo fully then combination of Levo and T3 is the answer.

Within all these options the thyriod patient first looks at their symptoms, keeping a diary of them helps, add a blood test and see what room there is to increase the dose, add Vits and minerals as necessary and voila you’ll find your own personal sweet spot ie optimal.

Everyone’s ‘optimal’ is unique to them.

NWA6 profile image
NWA6 in reply toNWA6

Also why have you not had a thyroid test for 2yrs?

janland profile image
janland in reply toNWA6

Oh.. thank you for that information.. really helpful..I'm offered a thyroid test about once a year...but haven't been asked for about a year to have one..?

I usually ask for my results to be printed and I collect them..but not all blood tests I have are for thyroid..

Some are for platelets levels as I have low platelets..ITP..an auto immune disease.. plus for 20 years approximately... restless legs and thyroid..(hypothyroidism)..

Had all 3 troubles for about same amount of time..

I realize our bodies ,hormones and brain functions and endocrine sytems are all linked...

I try to keep gut healthy too as this is linked to our wellbeing...as Dr Michael Moseley writes in his book.

I don't think though that gps treat the whole person.... and lot of stuff is overlooked or left out...as long as you say..."we are in normal range".

Yes..we are all different and do need tailored help and treatment..

janland profile image
janland in reply toNWA6

Thank you for explaining all that...Yes..I guess these days it's a case of "if you are fairly well" you'll be ok ...?

It seems so.

humanbean profile image
humanbean in reply tojanland

But what do you mean re "optimally treated"?

If I was optimally treated I would hope to feel the way I imagine healthy people feel. In other words, no muscle pain, bowels working fine, gut working, not dizzy, no chest pain, able to think clearly, motivated, not depressed, not anxious, with physical and mental energy, and sleeping well.

I should point out that this has never happened at any time in my life after the age of about 5, although even then I would say I had less energy than other kids, and had some niggling health issues that I only found the cause of fifty years later.

janland profile image
janland in reply tohumanbean

Thank you for explaining to me...I agree that there's not a lot of 100% satisfaction from gp surgeries...

I feel I just get fobbed off with tablets to mask a problem... when what we need is the cause to be treated.

humanbean profile image
humanbean in reply tojanland

That is true up to a point. In many cases there are no known cures for many common problems.

1) If someone is suffering from autoimmune hypothyroidism and their thyroid has been damaged as a result, they can be treated to replace their missing thyroid hormones, but there is no known way of regenerating a damaged thyroid. So thyroid hormone treatment is the only option open to people.

2) As someone whose iron and ferritin drops dramatically as soon as I stop supplementing iron, I'd love to know why it happens. But I've never heard of GPs being interested in finding out the cause of regular iron loss so tablets are the only option. Avoiding iron pills because I dislike taking them won't make me feel well, so I just accept the inevitable and carry on taking them because it makes life much better for me.

3) I'm completely in agreement with you that finding the cause and treating that, to prevent further damage, is the way to go where possible. One thing that upsets me a lot is how indigestion and acid reflux, which are often caused by low stomach acid, are treated. People get their stomach acid shut off with PPIs as a treatment and in the process they end up with little energy and poor nutrient levels, plus they have an increased risk of infection. But by taking a stomach acid substitute (Betaine Hydrochloride + Pepsin) people could avoid these side effects and their digestion would work more like that in healthy people.

janland profile image
janland in reply tohumanbean

I'm not quite sure what PPIs are..but I know a lot of people have acid reflux... which shouldn't happen but there's a reason...One woman said she can't eat fruit because it's too acidic..but I think there's much more to it than that... there's always a root cause as to why our bodies don't work properly.. could be genes...stress or just bad lifestyle...but if one tries to do all the right things and we are still not well...we need specialists to delve deeper into the problem.

humanbean profile image
humanbean in reply tojanland

PPI = Proton Pump Inhibitor. Examples include Lansoprazole and Omeprazole. They shut off stomach acid production almost completely. They do have many uses but when the only problem someone has is low stomach acid they shouldn't be used to reduce it further.

Acid reflux is always discussed by doctors as if it is caused by excess acid. But as they age people's bodies are less and less capable of producing stomach acid. And who are the biggest consumers of PPIs? Old people.

People who have managed to wean themselves off PPIs and who have increased their stomach acid with Betaine HCL or other acids feel a lot better and digest food better than they do without stomach acid. And taking extra acid reduces acid reflux because the valves at top and bottom of the stomach are supposed to work with a high acid environment, and so they stay closed when they should and open when they should and less acid goes up the esophagus. Shutting off stomach acid makes those valves work poorly and erratically.

There are some reasons why people need PPIs e.g. if they are taking NSAIDs (e.g. aspirin, naproxen, iboprofen) for pain relief. NSAIDs are extremely irritating to the gut and for reasons I don't understand PPIs help reduce that problem. People also need them as part of H. Pylori treatment or when they develop peptic ulcers and need them treated. I'm sure there are other reasons, but I've forgotten what they are.

janland profile image
janland in reply tohumanbean

Oh yes..I do believe I was prescribed Omeprazole in the past...it might have been to counteract some steroids or something...but I'm not a lover of any tablets if I can help it..I'd rather reduce tablets if at all possible and try more natural things...herbs.. vitamins and food for example..My father had an ulcer but he was never prescribed antibiotics for it...it was helipylori...he was in pain for many years but only took a chalky substance... Bismuth..

He died in 1991.... just before the Australian doctor had discovered the cure I believe..

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