Twitching legs and feet. : Hi All , I was treated... - Thyroid UK

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Twitching legs and feet.

Sammmy profile image
21 Replies

Hi All ,

I was treated for graves in 2015 and as a result I’m on levothyroxine.

My question is to you lovely people is does anyone have problems with twitching muscles in the legs and feet?

I’m being treated for plantar fasciitis Which is costly but feel it’s not improving.

I’ve got a feeling I’ve got something going on with my nerves and muscles.

I feel like I have wriggling worms in my feet and legs - my feet are quite painful.

I hobble about likes an old lady.

Thanks in advance for any info.

Sammy

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Sammmy
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21 Replies
greygoose profile image
greygoose

Plantar Fasciitis is a hypo symptom. Are you optimally medicated for your thyroid? What are you taking, and how much? Do you have an lab results to share with us? Have your nutrients been tested: vit D, vit B12, folate, ferritin? It could either be that you're undermedicated or you have nutritional deficiencies. :)

Sammmy profile image
Sammmy in reply togreygoose

Thanks grey goose,

I’m taking 100mg thyroxine but dosage has been up and down.

I did ask gp to test all my vitamins last time I had bloods- it did show slightly low vitamin D in may. I took vitamin D for a while then stopped. Maybe I’ll carry on with it.

After being treated for graves with RAI I wasn’t put on thyroxine for about 18 months and then it was only 25 mg.

I had a struggle with the diabetic nurse to increase my dosage- I’m not diabetic by the way- the hospital referred me to her.

After a while it was put up to 50mg then she told me to see GP for appointments and bloods.

I had regular bloods and knew my dosage needed increasing but no they wouldn’t.

One GP said you don’t need another test till next year!!

I was down but wasn’t being listened to.

After another blood test I was phoned by a GP to ask why was I still on a starting dose and my TSH was 10. WELL- I did try!!

I’ve also been diagnosed with a heart murmur- don’t know if that goes along with hypothyroidism.

All this has gone on since 2015.

I’m due for some more bloods so I’ll make sure to get a print out and post them.

Sorry to bleat on. 🥱.

greygoose profile image
greygoose in reply toSammmy

Sounds like you've been treated very badly. They're so eager to kill off the thyroid, and then have no idea how to treat the resulting hypo. Makes me so cross! Be interesting to see your next set of results. I'm pretty sure you're under-medicated.

helvella profile image
helvellaAdministrator

I’m being treated for plantar fasciitis Which is costly but feel it’s not improving.

How are they treating you?

I had PF some years ago and suffered horribly from the prescribed treatments. Exercises which made it worse. Orthotic insoles which made it much, much, much worse.

Eventually my levothyroxine dose went up and I bought some supersoft "diabetic" insoles. And time.

Recently has come back. :-(

Have always used diabetic insoles since finding they helped.

Tried Volatarol gel - which helped a bit.

Added B12 (1,000 micrograms a day) - and, in conjunction with the Voltarol, it does seem to be helping. No idea what is really happening and why! Also, resumed cycling (ebike so not that heavy on the feet) which had been too uncomfortable with PF at its worst. Definitely helping a bit.

Sammmy profile image
Sammmy in reply tohelvella

Hi helvella,

Thanks for your very useful information.

I’m having ultrasound treatment at £30 a go. I’ve had 7 treatments.

I’m also getting fitted for insoles. I think that’s about £120.

I’ve been putting voltarol on and KT tape.

Also using insoles but not diabetic ones.

My vitamin D was slightly low in may last year so I took a daily dose for a few months but not sure how long I should take it for.

I’m not sure if my B12 was tested if it was she didn’t mention it being low.

Is it okay to just take a daily supplement ?

I’m due some more bloods so I’ll ask to have them checked again.

Thanks again.

helvella profile image
helvellaAdministrator in reply toSammmy

I had tennis elbow a while back. The physiotherapist tried various exercises and massages - didn't really help. Then, somewhat reluctantly and without any faith it would work, she used therapeutic ultrasound.

I actually felt something change deep inside and from that moment it started to improve. Had a few further sessions but it was that first one that really helped.

Someone who claimed to be a foot expert made hard orthotic insoles for me. They caused the worst pain I have ever had in my feet. Together with recommendations for exercises that also made it worse, it put me right off the standard advice. Hence my decision to try diabetic insoles.

Have been thinking about getting some tape.

I have no idea as to my B12 level. Although far better to know where you are, I am simply taking 1,000 micrograms a day as a tablet which falls apart in my mouth. Oddly, I do think the B12 and Voltarol are in some way working together.

greygoose profile image
greygoose in reply toSammmy

Best to get your B12 tested before supplementing. You need a base-line. You also need to in if it's low enough to warrant testing for Pernicious Anemia. If you start supplementing now, you'll lose all that and any chance of free B12 injections should they be necessary.

Fruitandnutcase profile image
Fruitandnutcase in reply tohelvella

When I had PF I foundThat I couldn’t bear the usual hard insoles recommended. I discovered that good quality fitted trainers I bought Asics trainers and found them to best. In fact I now never go barefoot or wear flip flops, I always wear very supportive shoes I’m one of these old ladies you see wearing trainers with everything but my feet don’t hurt, like people are saying anything that is firm underneath my foot is a no no is something I avoid.

I got a pair of plantar fasciitis support socks from Amazon. They are quite tight and elasticated and hold my feet firmly and made an enormous difference. I went online and googled everything I could see to do at home to help. I found filling a small drinks bottle and freezing it, Then rolling it across the floor under my foot was a great help. When I told my Pilates teacher/physiotherapist she thought I was doing a bit much ( at that point I was doing everything I had to read about online ) so much that she said she thought I should give my foot a rest, Although she also recommended alternately dipping my foot in hot and cold water.

I think PF is One of the most painful conditions there is.

JAmanda profile image
JAmanda

Possible vitamin deficiency? magnesium or b12 or several others. Test and see what’s low.

Sammmy profile image
Sammmy in reply toJAmanda

Thanks JAmanda,

I’m going to have them tested soon hopefully.

Ellie-Louise profile image
Ellie-Louise

Look on YouTube, there are some brilliant Plantar videos.

Sammmy profile image
Sammmy in reply toEllie-Louise

Hi Ellie- Louise- yeah I’ve watched loads whilst in the bath. 😁😁

Ellie-Louise profile image
Ellie-Louise in reply toSammmy

You’ve got a posh bath Sammmy. 🤣

helvella profile image
helvellaAdministrator in reply toEllie-Louise

Have had a look at a few. They vary hugely. Some seem to understand reasonably well. Others are dire. :-(

Will have to watch many more to make a better assessment.

Ellie-Louise profile image
Ellie-Louise in reply tohelvella

I can’t remember which one I used as it was about 3 years ago. I had suffered badly with plantar pain in one foot for over a year and the doctor on the video I watched explained how, why and what happens to cause it. He showed exercises in great detail using himself as the guide.

I found it a great help.

Hi there, not sure if this is relevant but when I was first ill I had thyrotoxicosis due to thyroiditis. One unpleasant symptom was muscle twitching (fasciculation). Leg muscle, glutes and jaw twitched involuntarily alot and my jaw snapped at times. My muscles all pained too. This all resolved once the thyrotoxicosis had passed and I became hypothyroid. So my experience is that high levels of thyroid hormone caused muscle twitching and low levels caused muscle pain.

Michael

Sammmy profile image
Sammmy in reply to

Hi Mike77,

Very interesting.

I think I’d been suffering with graves for years before being tested for it. I was even referred to a neurologist for constant eye twitches- that was about twenty years ago!

As I’m typing this my thigh muscles are twitching. I also get the facial twitching too.

It’s sad but you kind of give up because it’s such a battle trying to get answers and results. You just get used to it which shouldn’t be the case.

in reply toSammmy

Don't give up Sammmy, it's a long journey but you shouldn't just have to live with unresolved symptoms, check out the advice on other posters to your message.

Michael

SlowDragon profile image
SlowDragonAdministrator

Plantar fasciitis is frequently linked to low FT3....and low vitamin D

Low FT3 extremely common on just Levothyroxine

What are your most recent Thyroid and vitamin results and ranges

What vitamin supplements do you currently take?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common after Graves

Ask GP to test vitamin levels

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, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Are you on strictly gluten free diet?

Many of us had plantar fasciitis when under medicated or poor conversion of FT4 to FT3 meant needs small doses of T3 prescribed alongside Levothyroxine

Sammmy profile image
Sammmy

Thank you slow dragon.

Willowrabbit profile image
Willowrabbit

Hi Sammy,

I've got that too, it's worse at night in bed, and like you I am taking Levo, not much you can do about it, I've taken baclofen a muscle relaxant ,it makes no difference, I may as well be taking smarties I'd get the same result, sorry I can't help you ,but at least you know it's the Levo .

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