Vibrating legs and feet

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Hi 

I've been on Methimazole 10 mg since January 11th of this year. My official diagnosis is hyperfunctioning thyroid nodule. My TSH is suppressed to 0.015. The med brough my T3 to mid range normal and T4 1.87 with a high range of 1.85. 

I've been doing a very low carb diet for 2 weeks and having withdrawal headaches and incredible weakness, so I added a slice or two of bread and peanut butter between meals. 

Today, I felt well and since it was a lovely day, went outdoors to fix my chimes. In about 15 minutes I began to get nauseous and very weak. I had run up and down the stairs for supplies prior to feeling bad. It took me at least an hour to recover where I  could walk without feeling drained. I took a cup of V8 and a square of chocolate as I felt like I had a massive attack of low blood sugar. 

About an hour later, from the knee down, both legs felt like they were vibrating to the soles of my feet. I'm freezing cold and my fingers are on the verge of tingly. My legs now feel like they are made of lead. 

Could this be thyroid related? Going hypo perhaps? Or could it be seasonal allergy as I am very prone to sinus/allergy. My head hurts and my teeth hurt with typical sinus symptoms. My cheeks are beet red. 

Could it be a reaction to the Methimazole? I've been on 7 week though.

I'm thoroughly confused. This brought on anxiety, the last thing I need right now. 

Also, what concerns me is I have some TSI and TPO antibodies but my RA Uptake scan was 5.9% at 6 hrs, low in left lobe and higher in right with 3 CM nodule. At 24 hrs uptake was 20% with 5 on the left and 15 on the right side with nodule. Diagnosis was hot nodule.

My #'s were never very high but TSH has been suppressed since I was put on Armour Thyroid years ago to shrink the nodules. My PCP tested for "thyrotoxicosis" and was unsure of the cause. When he read reports, he told me he felt the antibodies were from a bad virus I had in Feb causing Labrynthitis for 3 months. When I had the antibody test I was just getting over a 3  week flu that knocked me for a loop. Could this have caused antibodies? 

At this point, I'm not sure what the heck is even wrong with me. The test confirms hot nodule so why the antibodies? I have no energy anymore. My hands are like ice.  I get headaches and dizzy spells. 

Please tell me if you can make sense out of this and if you think the vibration is related to thyroid or the anxiety.

Thank you 

Jaye

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12 Replies

  • Posted

    PS. I should add that I've been under monumental stress since Feb. 2014 when my husband was diagnosed with cancer. It was 2x surgery and chemo and just a horrid time. He passed in May 2015 and a week later I began to fall apart from head to toe. I know Graves can be brought on by stress but I read the thyroid scan would be diffuse and on the high side if the entire thyroid was involved. Can a nodule cause Graves or the antibodies? Anyone know?

    My occular migraines have returned which causes anxiety. When I get an allergy headache my cheeks sometimes turn red and burn. I feel like I'm falling apart. 

    I've come to learn there is more info here than in the doctor's office. Sorry for the information overload. Thanks again. 

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  • Posted

    Hi Jay, this is probably too complicated for me to tell you what it could be but when I read your addition about your husband I have seen my story, just wth my dad. I am really really sorry for what has happened to you. My timeline is similar too, my dad was diagnosed with glioblastoma (one of the most aggressive forms of brain tumours) in October 2014 and died in April 2015. My mother in law died suddenly in January 2016 and since then I started to have all sorts of emotional stress related issues, until in October last year I started having strong hyperthyroidism symptoms. The diagnosis 2 months later was stressed induced Graves, with very higher antibodies. My uptake scan shoes a fully hyper thyroid so I am not able to understand your scan that shows the nodule, however I would say you might have a combination of things going on, with the antibodies relating to the graves/stress.

    Prior to taking meds, my legs twitched like hell, I could not keep them still even if I concentrated on them. You could have something similar going on.

    I am really sorry for what you are going through, the kind of stress you suffered is bound to have an impact on your body.

    Big hug to you

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  • Posted

    RE the sensation to be falling apart again now, I can tell you that Graves gave me that, brought on piles of anxiety (I am not an anxious person normally at all) and a sense of complete overwhelm... I can recognise myself in this "falling apart" you describe from befor taking my antithyroid med.

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    • Posted

      Hi Rita

      Thank you for your kindness :-)  I'm so sorry for your loss as well. We're almost have the same timing.  I wouldn't be surprised if I have more than just the nodule. I also feel very "low blood sugar." 

      After Tom passed, things happened to me that I'd never knew could be possible. I had a normal Posterior Vitreous Detachment which occurs in almost everyone at one time or another. It's where the gel in your eye separates in a natural aging process. Well, a week after Tom died, I started seeing circular colorful flashes in my right eye that scared the heck out of me - went to the eye DR. and had the PVD but mine included a retinal bleed. My eye was filled with black webs and blobs of blood. This was shocking. Took 6 months to recover - then one morning I awoke with the room literally spinning. Didn't stop for almost a week. Dr. diagnosed labrynthitis that caused the vertigo, and then severe dizziness lasted 3 months.  Just getting on my feet and I had the same type of PVD in my left eye with bleed again!  Worse black blobs and cobwebs. Just when that started to go away I started to have fainting spells - weakness - and hyperthyroid. It was like every single part of my body was breaking down. 

      Very odd - when I was young - I had tachycardia every single night 1/2 hr after falling asleep. Had numerous tests, all fine. But I went through my entire life this way till I had a hysterectomy 17 yrs ago. Then my tachycardia stopped along with the occular migraines I had from the time I was 18. I figured it was estrogen related but maybe a bit of thyroid too!  Odd as well that I didn't have the racing heart when hyper or other hyper symptoms. I felt more hypo. Crazy. 

      How are you feeling now? Are your antibodies and levels under control?  I hope your mom and family are doing okay. Tom also had a rare and extremely aggressive cancer called MPNST. The thing is, he was a plumber and it appeared as mesothelioma, but the lab tests were positive for MPNST with the location and behavior of tumors appearing as meso. He had docs stumped. We went from NY to DC to specialists in Texas for help but end result, the tumors won. It's a fight to the finish though, right?  Hospice told me sometimes the second year is harder than the first because the shock has worn off. I find this is true in my case. Sending prayers and hugs to you and yours :-)  

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    • Posted

      Hi Jay, I was doing a lot better on Carbimazole (on it for 5 weeks) up until 3 days ago, when I woke up covered in a rash. I don't know whether it was Carbimazole related but the first day of the rash I felt absolutely rubbish, lethargic to the point of having to leave work to go home to sleep... The last time I missed work due to sickness was due to swine flu, 8 years ago! As well I only slept in the afternoon ever before in my life while haevily pregnant, 9 years ago, so it was REALLY strange for me to feel so exhausted, I suppose it was the allergic reaction. After back and forth via email with endocrinologist and precious suggestions here, I have decided to stop Carbimazole for a few days and hope the rash will disappear, then maybe try again with a smaller dose. In the meantime I should receive the results of the blood of test I did 3 days ago and understand if Carbimazole was having correct effect on the thyroid and whether my white blood cell count is still above minimum limit (it has lowered due to Carbimazole). Despite its side effects, this drug made me feel so much better in regards of the hyperthyroidism symptoms that I would like to try and keep it... We will see.

      My mum has ups and downs, I don't think she has fully processed the whole lot yet. I have gone to therapy to deal with the "anticipatory grief", from diagnosis, as well as after death. It helped a lot... thou I fully agree: the second here is A LOT harder than the first 😔

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    • Posted

      Hi Rita

      I'm sorry you're reacting to Carbimazole after 5 weeks!  We're just about in sync! I've been on Methimazole for about 6 weeks. 10mg. My Endo never told me to test blood every month but thanks to this forum I knew to ask my PCP to order it, which he did. Neither one test white blood cells so I'm going to ask to have that test next month as well. 

      I hope you find out the exhaustion wasn't a result of allergic reaction and that you can stay on the med. What's your dose? I'm thinking in about a month or so I might have to cut to 5mg so I don't go hypo.  How is your TSH level?  Mine is 0.015 and hasn't budged, even though I've been taking 3000 mgs of L Carnitine daily since before I even started Methimazole.

      Since the meds, other than since the rash, do you feel energetic and then get a sudden drop if you've done too much? I'm good for about an hour of housework and then I have to sit down. I too feel better on Methimazole but it's a very slow process. 

      Feel better :-)  Hugs to you and your mom. 

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    • Posted

      Hi Jay,

      You are so sweet :-)

      I was on 20mg/day, I have just stopped 2 days ago due to the rash, which is now gone (I will post an update on a new topic in a little bit as I had my bloods done too). My TSH is <0.01 since early December, no changes so far. I haven;t started L Carnitine yet.

      I have never lost my energy through this, I have always been a person full of it. However I have lost the ability to keep up with sustained effort, since I have gone hyper. For example I ran a marathon just 15 months ago, while just 3 months ago I was unable to run 10K... My body completely changed on me.

      For me Carbimazole acted pretty soon, in 2/3 weeks I was feeling immensily better (up until the rash).

      Good luck with everything, I will follow your news here!

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    • Posted

      Wow, I hear you about the short energy span. Same here. This really changes your lifestyle.  My TSH was < 0.001 for months. I started L Carnitine last October I think. In January it had only gone up to 0.015 and hasn't budged since. 

      I hope your bloods are good and you can go back on med soon!  Will watch for your good news too :-) 

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  • Posted

    Hi Jaye, just to let you know that a very low carbohydrate diet might have an impact on the thyroid by reducing the conversion of T4 to T3. You can search for Non-Thyroidal Ilness Syndrome and Euthyroid Sick Syndrome. 
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    • Posted

      Thank you, Dan. 

      Wow, just checked it out. Makes sense. I never felt so bad as I did yesterday. Maybe being on the anti-thyroid med along with a severely limited diet had me on the verge of crash. It felt that way. My T3 was back in mid normal range last blood test with T4 being almost normal and I was starting to have good days - still with limited energy that runs out fast. I might be cutting the pills in half - to 5 mg soon in that case. I don't want to go hypo. But my TSH is very stubborn. It's been so low for so many years on Armour and now almost non existent so maybe my thyroid doesn't know what to do? I wonder if it could be possible my thyroid is in some kind of failure? Something triggered that nodule to go hot. Stress or illness. And from the article you cite, illness does mess with the thyroid. I've nodules for over 15 yrs. The hot one is actually shrinking my PCP said. 

      Thank you again for the info :-) 

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  • Posted

    I'm new here. Just signed up to get in on some of these conversations but I too had vibrating legs and feet in the beginning, especially after over exerting myself doing things that required no real energy previously. I think it's the thyroid and not the medication because i hadnt even been diagnosed yet when this was happening to me.

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    • Posted

      Hi TCee48

      Thanks for replying. Are you on meds now?  I've been on since Jan 11th and T's are mid normal  now. My TSH is still low at 0.07 and I'm hoping L-Carnitine will normalize that soon so I can taper Methimazole. @10 mg I started feeling hypo, so I reduced by 2.5mg 3 days ago and feel much better. 

      Are you on meds yet? Do you have graves or overactive nodules?  How are you feeling? I think you're right about it being the hyperthyroid as I haven't had it since posting.

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