Weak shaky legs anyone : I had asked this in my... - Thyroid UK

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Weak shaky legs anyone

mikkymouse profile image
41 Replies

I had asked this in my post regarding crying. I didn’t get replies so don’t know if anyone read it and saw my other question regarding weak shaky legs. I have had them for several years now and thinking back they started around the time my Synthroid was reduced from. 125 down to 75. In two stages. Not all at once but within a month or so of each other. Don’t have a clue why. Some damn drs idea probably based on TSH numbers. This is one of my most disturbing symptoms along with fatigue and light head. Has anyone else suffered this. Thank you. Hi

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41 Replies
Marz profile image
Marz

Lower back issues can be the root cause of weak legs. I have had spinal surgery for stenosis and trying to keep my legs strong is a challenge. Have had intensive Physio for the last 4 months - three times a week - acupuncture/massage/electro therapy. Now swimming daily - 50 x 2 lengths - 25 minutes each session. The best things have been for a few years after bursitis in both hips ... Walking great distances is still difficult and uncomfortable ..

Hope you find some answers soon 😊

mikkymouse profile image
mikkymouse in reply to Marz

Thanks Marz. You have had your problems haven’t you. I don’t think it is back related at all though. I don’t get back aches and there is no pain. Only shaky and one post today says that is common when you are undermedicated like everyone in here thinks I am. I am just in day 6 of the NDT so I have to give it a chance. Very low dose still.

Thanks again

Marz profile image
Marz in reply to mikkymouse

So early days ... keep looking at the hirizon !

Baobabs profile image
Baobabs in reply to mikkymouse

When I missed my T3, T4 meds last week to have bloods drawn my legs were very weak and I felt at one point I couldn't put one foot in front of the other. I concluded this was due to low levels of thyroid hormone circulating in the blood.

shaws profile image
shawsAdministrator in reply to Baobabs

How long did you leave between your last dose of thyroid hormones before your blood test?

Baobabs profile image
Baobabs in reply to shaws

The usual as suggested here shaws, 12 hours for T3 and 24 hours for T4.

shaws profile image
shawsAdministrator in reply to Baobabs

I am not medically qualified but I don't think you should have had such a bad affect because one dose of T3 should last between one to three days and T4 has a long half-life.

Baobabs profile image
Baobabs in reply to shaws

Thank you for your response. Well I wonder if I have some hormone resistance going on and I had to fast for a lengthy period as I had cholesterol testing done also.

shaws profile image
shawsAdministrator in reply to Baobabs

Maybe the fasting caused it.

Baobabs profile image
Baobabs in reply to shaws

Well, whatever, I feel great now and the symptoms appear to have gone!

mikkymouse profile image
mikkymouse in reply to Baobabs

Thanks. This is interesting. Because I feel I was undermedicated at 75 mcg and now that I just switched to NDT and am only taking 45 (3/4 of a grain I think) I’m still way undermedicated.

Dodge7 profile image
Dodge7

When my thyroid was extremely high I got shaky legs and hands to the point I was asked if I had Parkinson's, not really any weakness though.

mikkymouse profile image
mikkymouse in reply to Dodge7

Thanks for replying.

Calends profile image
Calends

Yes, on the crying.

I didn't see our post until tonight. So maybe it went astray somewhere. But I try to say HI to anybody who is feeling rough. Take care.

mikkymouse profile image
mikkymouse in reply to Calends

Thanks. I don’t know what you mean though by our post.

Calends profile image
Calends in reply to mikkymouse

You said that no-one had responded. You said you were desparate. So I wrote to say, "I saw your post. And I wish you well".

:-)

mikkymouse profile image
mikkymouse in reply to Calends

I realized that you meant your post, not our. Brain on vacation. Somewhere warm I hope. Thanks for taking the time to post.

JumpJiving profile image
JumpJiving

Yes, weak, tired, achy legs and hips when hypo. Also, what I describe as Swiss Cheese Legs, where it feels like blood is rushing through holes inside legs (particularly below knees). I cannot describe that in any other way, and have never seen anything online about that sensation. Thankfully, I haven't had that for ages - I assume that happened when I was very under-medicated.

mikkymouse profile image
mikkymouse in reply to JumpJiving

Thanks JJ

That is a very weird sensation you had. Who knows if our kegs are / were caused by undermedicated or not. I’m only at 45mg or mcg or whatever it’s called and I’m so anxious to up my NDT but need to go slow.

Jenny583 profile image
Jenny583

Hi Mikkymouse

I'm really not qualified to answer, as I am only an accredited hypochondriac, and never taken T4.

It does sound like the reduction in medication though.

I see you live in Canada, so is there some way that you could find a proper Dr?

T3 used to be used by Psychiatrists to treat depression, so the crying could be related too. I would be dead if not for the online resources, and T3.

Please don't let the Dr's do this to you.

mikkymouse profile image
mikkymouse in reply to Jenny583

Hi Jenny

Lol. I’m a hypochondriac too. But there is no way I’m imagining how I feel now even though it was suggested to me by my GP that it was in my head. That is because I had bad anxiety five years ago. It also was when they reduced my Synthroid from 125 to 75. No idea why.

That is interesting about using T3 for depression. I’m not depressed but not super happy either.

I do have a good naturopath treating me now. I just got her two weeks ago. I’ve had her before and really liked and trusted her. I love my GP but he is like all the other blockhead drs when it comes to testing thyroid issues.

Jenny583 profile image
Jenny583 in reply to mikkymouse

I'm sorry, I didn't mean to imply that anything is in your head. Only that crying or feeling down is 1 of the complications of lack of thyroid, as is shaky legs. The medical profession used to ignore patients, and the patients used to end up in mental homes with a diagnosis of depression.( If I get hypo, with low levels I look depressed, and I was put on anti-depressants all my adult life, they did a lot of damage, whatever you do don't let them do that to you mikkymouse! )

Then Psychiatrists noticed that the patients got 'better' on T3, then big pharma muscled in with antidepressants together with T3, then they had the T3 removed and claimed that the wonderful antidepressants were the 'cure'. And that was the end of T3 as a medicine. And now Dr's call T3 a 'sports steroid'. And they claim that anyone would feel better on 'steroids' and even imply that it has a placebo effect. But then it is the drug companies that keep them in luxury.

I will try and find the article.

mikkymouse profile image
mikkymouse in reply to Jenny583

I’m going to pm you and I never thought for a second that you were implying it was in my head. No worries.

mikkymouse profile image
mikkymouse in reply to Jenny583

I am going completely bonkers. You are the one I meant to pm. Have to eat lunch now but will do it after I’m finished.

Sounds very much like a lack of medication. Happened to me after a partial thyroidectomy until the remnants the surgeon left behind started to work again 3 months later. If you see footage of the marathon from years ago where runners are wobbling all over the place, their legs like jelly until falling over the finish line - that's it precisely!

mikkymouse profile image
mikkymouse in reply to

Oh thanks so much for this. I feel so much better when I read posts like this. I have tried to tell myself for five years that it was imagined but I never really believed it. Yup, I just crossed the finish line ( came in first lol) and my legs are jelly. It’s an awful feeling isn’t it. Hard to stand so I can’t do much not that I can with being so pooped all the time.

mikkymouse profile image
mikkymouse in reply to

I just enlarged your picture. OMG!!! The poor thing. Did he tangle with a porcupine. So sad!!!

chrisbuy63 profile image
chrisbuy63

Hi yes my legs are weak and shaky, so much so that I can barely stand and when I do can only stand for a minute or two before I have to sit down or lean on something for support. I know there is a condition called Orthostatic Tremor and believe this is what I now have because if I am walking or sitting I do not experience the shaky tremor in legs only when I am standing still. I do have Hashi's and I am on thyroxine 100 mcg and last week had test and TSH came out as 2.21 this is up from 1.14 last test in Dec last year. I am not optimal yet as I think I do better nearer 1 but Gp says I am in range so no joy there, I suspect the Orthostatic tremor is all linked to the thyroid but no one knows what causes it.

mikkymouse profile image
mikkymouse in reply to chrisbuy63

Hi there. I’m sorry I thought I answered you. Got interrupted and that is that. My mind is out to lunch somewhere far away lol.

You have described me exactly. I’m going to look up that posteral thing. Hope it’s not it. I’m praying it’s med caused and once I am stable it will go away. It came when I started to get bad with Synthroid. If your GP says you are in range then you are fine, even if you were to fall on the ground in front of him lol. Everyone has the same type of experience with them. Drives you crazy. I like my dr a lot but feel he had let me down over this.

mikkymouse profile image
mikkymouse

Thanks for answering. That’s interesting. I was on a low dose of Synthroid until last week. 75. Now I’m trying NDT. Let’s see if it makes a difference. How do you feel in general. What is your TSH? Mine is 3.6 and people on here say it’s too high and I agree. I know you will be shocked when I tell you that my GP says I’m fine LOL!

ZippyAppletush profile image
ZippyAppletush

Hi mikkymouse , sorry I overlooked your comment about leg weakness in your post a couple of days ago. I was one of the first to reply but only saw the first part...early morning and awake but not quite with it, lol!

I do have leg weakness too, feel like I’ve run a marathon just going room to room in the house. In early life it was that as I grew I would fall over fresh air when thyroid meds needed a boost. Later in life on a constant stable dose I was fine, lead a happy active life, and then stupidity (doctors) took over and my life turned upside down for a set of ‘guidelines’. As meds’ reduced consistently I ended up being knocked down by automated doors as I was moving so slowly and had no balance. I got my health back on track overseas and felt confident enough to go out and about on my own and without a stick, got knocked back again when retired to UK, but fighting back now with help of this forum. Damage is done to knees (Osteoarthritis) through years of falling down sober, and tore ligaments in both ankles in the last bad fall, along with associated spinal stenosis from caring for disabled daughter for nearly 30 years and ongoing.

Still smiling though, so I haven’t been beaten yet! Hope you feel better soon!

mikkymouse profile image
mikkymouse in reply to ZippyAppletush

I love the names people choose for this forum. Like yours. I wonder how they come up with them. Mine is easy. My granddaughter is called Mikky and the mouse was added because it wouldn’t accept just Mikky.

I feel so bad for you. You are so much worse than me! Lots of pain too I would suspect.

Mine started too when the drs in their wisdom lowered my Synthroid from 125 down to 75 and refused to raise it even as a trial. It’s our bodies, not theirs but they want us to stay in what they prescribe because I believe they get “perks” from the drug companies. Big Pharma. It always boils down to money doesn’t it.

Thanks for replying.

ZippyAppletush profile image
ZippyAppletush in reply to mikkymouse

Hi again mikkymouse , and that’s such a great name for your Granddaughter, and yourself! 😁 Mine came from a name game...first letter of your first name, etc. I took it for FB initially as I had a bad experience in early days using my given name on there (too intrusive) and it has followed me round the social media and onto here! 😂

You’re right about the money and Big Pharma! 🤬 I didn’t realise how many people were being held to ransom in this way! It really is criminal! I’d tootled along quite happily - and oblivious - until my doctor retired and I fell into the black hole!

Oops...gotta go! Daughter has woken up and I need to go check on her. Hope to catch up with you again. Take care!

mikkymouse profile image
mikkymouse in reply to ZippyAppletush

Hi Zippy

Thanks for answering. First off, I’m so sorry for your daughter and the whole family. It’s rough. We have a friend with a grandson with MD and so I have an idea what you might be going through.

Mikky’s real name is Mikaysha but she suits Mikky so much more. She’s a spunky little ten year old.

Off now to acupuncture. I ended up with bad neuropathy in my feet thanks to the chemo. I’m hoping this will help at least a bit. We all have our problems don’t we.

ZippyAppletush profile image
ZippyAppletush in reply to mikkymouse

Hi mikkymouse and you’re welcome! Thank you too for your kind words. Sammi is effectively a child in an adult body but she’s our pride and joy and given all she’s gone through so far puts my grumbles into context.

I love your granddaughter’s full name, but she sounds like a ‘Mikky’, lol!

We certainly have to put up with more than we probably should have to. I hope the acupuncture gave some relief.

Take care and hope to catch up again.

mikkymouse profile image
mikkymouse in reply to ZippyAppletush

Hi there. Sammi is another really cute name. I’ve always liked boys names for girls. Like Bobbi for example. Mikky is Mikaysha Marie.

I go to acupuncture for the neuropathy in my feet that I got as a result of chemo for breast cancer two years ago. I don’t know for sure if it’s helping but I love visiting with the young girl who does it lol. My husband calls it my social hour.

Do you just have Sammi?

Keep smiling. And yes, every child is special aren’t they.

X

Sheila

mikkymouse profile image
mikkymouse

I’m sorry JJ. I thought I had answered you. I’m like you. I don’t know much at all actually. Just when I think I have it I find out I don’t. I’m getting so upset. After five long years of hell I want to feel good. Don’t we all.

How do you feel now? I gather you had thyroid cancer?

I’ve come to the conclusion that GPS are pretty useless except for handing out prescriptions. Especially antidepressants. Maybe these are where they get the biggest kickbacks.

mikkymouse profile image
mikkymouse

Not if you had a breast removed and 15 chemo treatments that left you hairless, sicker than you have ever felt in your life and with the chance of dying !!!

mikkymouse profile image
mikkymouse in reply to mikkymouse

I do know that thyroid cancer is one of the better ones to get. Sorry you had to suffer.

mikkymouse profile image
mikkymouse

Wow, that is a lot to take in. All I can say is that I’m so sorry that you have had to suffer so much. Life just isn’t fair. At least I am so very fortunate to have it all actually except for the last five years of hell. I have had a wonderful life.

You caught me at a bad time when you said you would rather have cancer. Sorry I said what I did.

Good luck.

Dodge7 profile image
Dodge7

I get very emotional with different levels. Sometimes I feel like crying over minor things and other times I'm very shut off. Before the thyroidectomy I got very depressed and anxious I also had extreme insomnia.

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