restless legs/palms/and over active bladder at night

[janland]

hi everyone

Please could anyone tell me if the above are all closely linked ?

it seems that a full bladder at night triggers restless jerky legs?

Perhaps more urine accumulates at night ?

Are the nerves over active that supply these parts of the body ?

I’m taking Levi thyroxine so not sure if this is a clue as well.

Also read recently that low blood sugar can trigger restless legs at night ?

If anyone has any information I would so gladly welcome as this restlessness and plmd is getting worse .

Can’t take doctors medications as they make me feel ill .

Thank you everyone

[Cavapoochonowner]

Hello, I take levo because I have had a thyroidectomy due to graves.I too have started to feel at night as if my bladder is over producing urine and feels over full( a strange feeling) I also sometimes have very vivid dreams, almost nightmarish.I have realised a link for me is eating too many sugary foods, or even eating supper( just cereal with milk).I have wondered if my body is finding it harder to control my blood sugars, and that is the cause.I also seem to sleep very deeply when this happens.I am trying to cut out sweets and biscuits but I love them😁so it is hard.If I have a sweet treat I try to have it before dinner time(lunch time).I don't know if this is the right cause for my problems, but I'm giving it a try, maybe this may help you.Best wishes.

[janland in reply to Cavapoochonowner]

thank you for your reply ..yes it might be connected to eating sugary things before bedtime or our bodies arnt controlling blood sugar so well as we get older .

I’m hopefully speaking to gp tomorrow but they are getting fed up with my refusing to carry on with the “augmentation “medication which makes me sick .

[Regenallotment]

This is familiar, drinking any amount of white wine or prosecco (and sadly champagne, cava and all variations of) does this to me and I’ve definitely noticed sugar is not my friend. I find certain times in the month (eg. pre menstrual week) are worse so wondered if fluctuating progesterone was to blame 🤷🏽‍♀️ Also looking for ideas on this one. 🦋💚🦋

[janland in reply to Regenallotment]

thank you..yes it does seem sugar is our enemy what about carbs I wonder ?

[Buddy195 Administrator]

Hi janland, what time do you take Levothyroxine? If at night, perhaps switch to morning.

[janland in reply to Buddy195]

yes I do take 75 mg of levothyroxine in the morning first thing before anything else .

[Jaydee1507 Administrator]

I have PLMD, affects my autonomic nervous system more than legs tbh but I have had the effect of full bladder and restless legs when undermedicated. I'm still undermedicated but hoping to change that in a while seeing a private doctor.

Can highly recommend you get your bloods done to show how much T3 you have. NHS will not do this so buy a kit from Medichecks or Blue Horizons. Also you need blood levels of ferritin, folate, B12 and D3.

You can definitely improve your symptoms but you need to take charge yourself.

[janland in reply to Jaydee1507]

thank you for your recommendations..it’s sooo difficult getting anything done as gp keeps telling me my blood results are normal .

If everything were normal how come I have this “nerves “problem with legs I ask ?

I might get private blood test done but I’m not really in a financial position to do this really .

[Jaydee1507 Administrator in reply to janland]

You need to ask your GP's receptionist for a copy of your blood results and post them up here. Iron will help, ferritin needs to be 75-100.

[humanbean]

I used to suffer from restless legs and cramp a lot, but I've managed to (mostly) fix my problem...

There are quite a few things that can increase the risk of cramp, twitching, or spasm of muscles. Some of the commonest problems are low vitamins and minerals.

Things which helped me to eliminate cramping were :

Magnesium (Mg) supplements : Low magnesium is incredibly common in the population as a whole. As long as your kidneys are in moderately good health (to get rid of excess Mg if you take too much) then you are likely to be safe when supplementing. Blood tests for Mg aren't reliable, so I would suggest just trying it and see if it helps. Mg can be taken internally or externally (sprayed on the skin or put into the bath as a soak, or taking powdered Mg in water or taking pills). For help on choosing a supplement google for "best and worst forms of magnesium" and see which ones appeal to you.

Personally, I take food grade magnesium citrate in powder form bought from Ebay or Amazon. I will take quarter of a teaspoon in a glass of orange juice (to disguise the taste, because it isn't nice).

Iron supplements : Iron should only be supplemented after thorough testing shows it is necessary. Supplementing iron without a good reason is a very bad idea. You can ask your doctor to test your iron levels for you, but they usually only test ferritin which doesn't tell you enough. If you want to do private testing then you could order this finger-prick test from Medichecks, and once you have the results you could post them and ask for feedback.

medichecks.com/iron-tests/i...

If you want more help with ordering private tests without a doctor, then just ask.

I keep a box of iron supplements and just take one if magnesium doesn't fix my muscles, but I do test my iron regularly and I know that one tablet will do no harm. But when my iron was low I had to supplement all the time or else I got severe cramp.

Vitamin D : Low vitamin D is a classic cause of muscle and joint pain. Your doctor might test this for you if you ask, but it is an expensive test by NHS standards and the chances of getting fobbed off are high. There are private tests for vitamin D available with finger-prick samples, if you can't get your doctor to test.

I take vitamin D most days anyway, so I wouldn't take this specifically for cramp.

Salt : Doctors tell us that too much salt is bad for us, and we should reduce what we take. Well, salt is essential for good health, so reducing levels too much can cause muscle problems.

I have occasionally drunk a small amount of salt water - I would use a "small" quarter of a teaspoon of salt or less, or alternatively I would drink a glass of this because it is more palatable - a level teaspoon in a glass of boiling water :

ocado.com/products/marigold...

Dehydration : If you are dehydrated it can cause cramp, twitching, muscle spasm, restless legs. Drink a glass of water.

Potassium : Low potassium can cause cramping and twitching, however, supplementing without need can cause problems with the heart rhythm, so this has to be a last resort. Some types of potassium supplements are also an irritant in the gut. I would suggest only considering this option if you've tried everything else and nothing has worked.

If any of the above things are going to work, I would suggest trying one of them, then leaving it a few minutes and seeing if it will work, if it doesn't help try something else.

[janland in reply to humanbean]

thank you soooo much for all that

Very helpful .

Think I will get a finger prick blood test if I can afford for one or two .

In the past they tell me my ferritin is normal and the rest but I think I need specific tests done .

I already take magnesium only one or half a tablet as it can cause upset tummy .

I rub mag gel on legs every night when woken up and massage it in .

I have such an array of vitamins and minerals it’s costing me a fortune ..

I’m not very good at drinking and keeping hydrated partly because I don’t want to be woken at night.

3 times is enough as well as restless jerky legs waking me up..

Getting hardly any sleep and consequently feeling tired during the day it’s really awful state of affairs .

I read before bed hoping this would help but it doesn’t stop the leg troubles .

I do take vitamin D and have enough salt I believe too.

I’ve gone down the iron route and tried so many as they upset stomach so much but last blood said I was normal and doc stopped the iron tablets .

I feel as though I’m stabbing in the dark ..

Just wish docs would find the cause and treat it .

Perhaps hypothyroidism has got worse and I need tablets levothyroxine to be altered

I really don’t know .

Can you please tell me what actually worked for you in the end .?

Thank you so much

Jan

[SlowDragon Administrator]

please add most recent thyroid and vitamin results

ALWAYS Test thyroid levels early morning, around 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[janland in reply to SlowDragon]

thank you once again for your detailed answer .

Yes I think vitamins blood test should be done again .

They don’t give my thyroid results to me which is done once a year

Receptionist just says it’s normal

goodbye ..

So it seems I should get a private thyroid test done doesn’t it ?

The Blue horizon one ?

Yes

I always have levothyroxine same brand each time 75 mg per day taken first thing .

If only I knew what was wrong

I know everyone is different and things change as we get older health wise but I’m afraid after so many years with restless legs and it’s getting worse I have lost faith in doctors but see what tomorrow brings if I can possibly get a “talking “ appointment

It’s taken me a week just to get this far in speaking with a doctor that’s if I can get in the queue fast enough tomorrow morning .

Thank you so very much..

I’m going to contact the home bloods companies anyway .

Best wishes

Jan

[SlowDragon Administrator in reply to janland]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Restless legs often low magnesium and/or low iron/ferritin

[SlowDragon Administrator in reply to janland]

approx how much do you weigh in kilo

75mcg levothyroxine is only one step up from starter dose

Also the only brand that makes 75mcg tablets is Teva

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long 

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

what vitamin supplements are you currently taking

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[janland in reply to SlowDragon]

Hi again and thank you for your last 2 very informative letters to me .

I’m sorry it’s been a few days since I heard from you but I’ve been trying to do my homework as it were and looking at the links etc ..

There’s so much to take in and I’m finding that I’m getting lost in it all .

I’ve noticed that my current levothyroxine has Teva written in small letters on it … not noticed this before and I genuinely thought that I’ve been taking the same brand for last 25 years although dosage has been different at times .

I just thought levothyroxine was levothyroxine didn’t think to question it even about the brand aspect .

So I wonder if the Teva could be making my legs worse lately

Restless legs/periodic limb disorder/ jerky legs for hours at a time during hours of about 1 am till 4 or 5 am this totally wears me out and have resorted to Codein now most nights .. plus rubbing and massaging legs with magnesium gel .

I’ve packed up most of my supplements now in view of a new blood test next Thursday a full blood test

Thyroid vitamins ferritin liver kidneys etc..

However I never get a detailed thyroid result and am usually just told it’s normal .

I did once think that restless legs and thyroid are interlinked being circadian and that the graph is quite similar the highs and lows .

My weight is 50 kg

I’m a retired woman quite active and eat healthily ..

If the doctors keep telling me everything is “normal “ I’m wondering then why I’m having these dreadful restless legs .

I think perhaps it’s nerve damage or lack of dopamine so I’m thinking an MRI scan might show this up ?

I’ve stopped all /mostly supplements and used to take about 8 different ones a day and change them around about once a week .

The list is :

Bit b complex

Vit D

Vit D with calcium

Probiotics

B6 and b 12

L tyrosine

Nicotinamide

5 hot

L theanine

L tryptophan

D riboose

Opti magnesium gentle iron

Herbal teas

I’m very grateful for all the links you have sent me and I’m looking forward to next Thursday when I have an early blood test (yet again )

Iv not ever seen results showing TSh ft4 and ft3 on bloods ..

I thank you once again and if no joy from next results might have to go for private blood tests ..

It’ll take about 2 weeks for me to get results they’ve told me ?

Oh well

I’ll have to be patient and then I’ll hopefully be able to send them to you for an evaluation .

Thank you so much once again

Jan

[SlowDragon Administrator in reply to janland]

you only need to stop vitamin B complex a week before test, or any other supplements that contain biotin

Is your test booked for early morning, ideally around 9am and last dose levothyroxine 24 hours before test

You’re legally entitled to copies of ALL your test results

Suggest you register for online access if possible

The MOST important result is always Ft3, followed by Ft4

NHS rarely tests Ft3…..and these days doesn’t even test Ft4 many times

Just testing TSH is completely useless