Thyroid? Or something else? Constant internal shakiness

Posted by amtxo1989 @amtxo1989, Feb 26, 2018

Going on 2months now everyday non stop. Sometimes mild and im able to ignore it but over the hours of day it becomes more severe and causing my heart rate to go up and my blood pressure to go very high (170/99) its episodic. Ive been to hospital for it 3 times for it and received no treatment as my vitals slowly return to normal. Xanex helps me feel calm but does not help the shakiness just helps me not get upset about it. Am only 28 years old and hypothyroid. I have never had symptoms like this in my entire life just started out of nowhere. Iam in good sTate of mind and aware of what’s happening when the episodes happen. So far my doctors are clueless.

@jewles63

Hi, I have had some of these same symptoms for over a year and about 4 doctors later I’m still not any closer to finding out why this is happening. It started out with chest pain lasting about 15 minutes that sent me to a doctor, after running some blood tests and a normal ecg he diagnosed me with Hasimotos and sent me for an ultrasound of my thyroid. I started levthyroxin and multiple nodules were found and my thyroid was enlarged, but we will keep an eye on it. (He said)! Still getting chest pain I was sent to a cardiologist where after lots of tests was found to be normal (lol) ! Now I have a vibration throughout my body that is driving me nuts.. Sent to a neurologist that found neuropathy in my legs and feet and started another medication for that. Still get the chest pain about once or twice a month and vibrate like a cell phone . I’m at a loss…and another ultrasound scheduled this week!

Jump to this post

@jewles63 – Thyroid imbalce certainly does have all kinds of symptoms!!! I told my endocrinologist about the vibrations but all she wanted to do was put me on a 24 hour halter monitor. I really don’t think it’s my heart because when it happens i check my pulse and it’s normal. I also listened to my heart with my stethoscope (I’m an RN) and it’s normal as well. So strange. I feel like no matter how well I explain this to any doctor they will never figure it out. I’m just praying it too shall pass. For me, they mostly happen in the middle of the night after I’ve been sleeping for several hours. Wondering if it’s some kind of positional neuropathic effect from compressing certain muscles/nerves in my neck?!?!?? Idk. I should get halter monitor results this week as well as repeat thyroid labs to see if my meds are working to suppress it. Prayers for everyone on here dealing with difficult symptoms.

REPLY
@johnbishop

Hi @jewles63, welcome to Connect. It can be a real challenge dealing with different symptoms and not being able to get to a diagnosis. I'm glad you are asking questions and being a strong advocate for your health. If you don't mind my asking, you mentioned the neurologist found neuropathy in your legs and feet and started you on another medication. Did the neurologist give you a specific diagnosis to type of neuropathy? Do you have pain in your feet and legs?

I have idiopathic small fiber peripheral neuropathy but since I only have the numbness there are no medications that address numbness. I'm hoping other members may be able to offer some suggestions or provide some more information for you.

Jump to this post

Neurologist didn’t name the neuropathy put me on gabapentin but it doesn’t help the vibration going on. I didn’t even realize that I couldn’t feel most of my legs and feet . I guess that’s a good thing because the emg freaked me out and I didn’t even feel it lol. I really don’t feel pain just once in a while burning .

REPLY
@jewles63

Hi, I have had some of these same symptoms for over a year and about 4 doctors later I’m still not any closer to finding out why this is happening. It started out with chest pain lasting about 15 minutes that sent me to a doctor, after running some blood tests and a normal ecg he diagnosed me with Hasimotos and sent me for an ultrasound of my thyroid. I started levthyroxin and multiple nodules were found and my thyroid was enlarged, but we will keep an eye on it. (He said)! Still getting chest pain I was sent to a cardiologist where after lots of tests was found to be normal (lol) ! Now I have a vibration throughout my body that is driving me nuts.. Sent to a neurologist that found neuropathy in my legs and feet and started another medication for that. Still get the chest pain about once or twice a month and vibrate like a cell phone . I’m at a loss…and another ultrasound scheduled this week!

Jump to this post

My thyroid was enlarged (Goiter) as well for at least 2 years. My endocrinologist did an ultrasound in his office and said that the nodules were actually "the ultrasound looking through parts of my thyroid that had already been eaten away and disappeared"… I said nope and went to The Mayo Clinic in Jacksonville. They said we would wait and see what happened with the nodules as well. I said "Nope, no thank you. Take it out." The pathology came back and I had Stage One Papillary Thyroid cancer. We never would have known if I hadn't insisted they remove it. Removal may not be necessary for all patients. I am just saying keep it in mind if it goes on for a while. Dr. Casler (the department Chair) has done more than 2500 Throidectomies and I wouldn't have trusted anyone else to do the surgery.

REPLY
@blulilbaby

My thyroid was enlarged (Goiter) as well for at least 2 years. My endocrinologist did an ultrasound in his office and said that the nodules were actually "the ultrasound looking through parts of my thyroid that had already been eaten away and disappeared"… I said nope and went to The Mayo Clinic in Jacksonville. They said we would wait and see what happened with the nodules as well. I said "Nope, no thank you. Take it out." The pathology came back and I had Stage One Papillary Thyroid cancer. We never would have known if I hadn't insisted they remove it. Removal may not be necessary for all patients. I am just saying keep it in mind if it goes on for a while. Dr. Casler (the department Chair) has done more than 2500 Throidectomies and I wouldn't have trusted anyone else to do the surgery.

Jump to this post

I guess I am surprised that a biopsy wasn't performed prior to surgery.

REPLY
@jsrbr

@jewles63 – Thyroid imbalce certainly does have all kinds of symptoms!!! I told my endocrinologist about the vibrations but all she wanted to do was put me on a 24 hour halter monitor. I really don’t think it’s my heart because when it happens i check my pulse and it’s normal. I also listened to my heart with my stethoscope (I’m an RN) and it’s normal as well. So strange. I feel like no matter how well I explain this to any doctor they will never figure it out. I’m just praying it too shall pass. For me, they mostly happen in the middle of the night after I’ve been sleeping for several hours. Wondering if it’s some kind of positional neuropathic effect from compressing certain muscles/nerves in my neck?!?!?? Idk. I should get halter monitor results this week as well as repeat thyroid labs to see if my meds are working to suppress it. Prayers for everyone on here dealing with difficult symptoms.

Jump to this post

Hi, I was also very confused by this feeling thinking it was heart palpitations too. After wearing a halter monitor twice a 24 hr and a 7 day with nothing ! My heart rate does drop pretty low and jump pretty high but cardiologist says that’s from being hypothyroidism w/ hasimotos . When I feel this feeling which seems all the time I use my Iwatch ecg so it’s not my heart .
To keep up with this feeling my heart would have to be beating at 200 bpm or more. I’m still thinking the chest pain is a heart spasm . I always tell my Dr that my check engine light is on when he asks how I’m doing !
I also had 2 MRIS ordered from neurologist with normal findings ( cervical and thorax ) hope your Dr can find why this happens to you.

Liked by jsrbr

REPLY
@estrada53

I guess I am surprised that a biopsy wasn't performed prior to surgery.

Jump to this post

He said that a biopsy was just about as invasive as removing my Thyroid because the nodules were small and scattered and that it might spread if it were cancer because the slices to remove a few nodules would be so small they couldn't guaranteed not slicing one with the incisions allowing it to spread. It was by far the easiest of the surgeries I have had. No recovery time really just had a balloon inserted for drainage for a few days and some bed rest. I stayed in the hospital for 3 days to make sure there weren't any complications. I am 2 years out from surgery now and I do not miss that thing at all. I have had a far easier time getting a good medication level and I am taking the Tirosent 75mg which is supposed to be the closest replacement to a natural Thyroid. The sore throat, dizziness, shakiness both internal and external, severe body aches, headaches, recurring throat infections, and goiter have all gone away since surgery. So far we have not seen any new nodules on scans since surgery. But again, surgery is not the answer for everyone.

REPLY
@jewles63

Neurologist didn’t name the neuropathy put me on gabapentin but it doesn’t help the vibration going on. I didn’t even realize that I couldn’t feel most of my legs and feet . I guess that’s a good thing because the emg freaked me out and I didn’t even feel it lol. I really don’t feel pain just once in a while burning .

Jump to this post

Good Morning
At this time I do not feel pain. I take Gabapentin every day, too. I've been taking it for a long time for my spine issues. I don't feel like it helps, either. My brother, who has spine issues, too, takes it and finds it helpful. However, he only takes it as needed. I don't know if that makes a difference.

A couple of weeks ago I went to a massage therapist. He worked hard on me. By the time I left, I could move my toes. It did not last more than a couple of days but it gives me hope.

Best for you…Ronnie (GRANDMAr)

REPLY

Hi @amtxo1989 , I saw your post and can totally relate to your symptoms I have been struggling with these internal vibrations ( feels like a cell phone or bumblebees) for about 6 years, and have seen every type of doctors for it, including going to Stanford and have yet got an answer for it. But I do believe it has to do with Hashimotos disease or hypothyroidism, most everyone that I’ve found with these internal shakes have one or the other. I started with these shakes only in my arms and chest and only noticed them when I would first wake up, and then it started in my feet and now I get them more strongly in my throat and slightly in my head,. I am a 40 year old mother of 3 and I guess consider healthy and active but mentally drained with seeing so many doctors and it has started to give me daily anxiety, these shakes can cause so much worry because you feel it and no one know what it is. These are some of the test I’ve had and all came back normal: heart monitor, stress test, eeg (nerve conduction study) MRI of brain and spine , endoscopy and colonoscopy, thyroid ultrasound, all kinds of blood test, this is just because I know doctors are gonna have you do these one by one. The only thing I can advise you is to try and not let it control you life , I definitely did and it is so frustrating and mentally draining, the unknown and worrying only makes it worst, some people who also have this say stress makes it feel stronger. It was suggested from 2 different Doctors that acupuncture would help so I thought I’d give it a try I had my first visit and have 5 more to go, I will let you know if this helps, or If I ever find anything that makes it stop lol

REPLY
@nancgdav

Hi @amtxo1989 , I saw your post and can totally relate to your symptoms I have been struggling with these internal vibrations ( feels like a cell phone or bumblebees) for about 6 years, and have seen every type of doctors for it, including going to Stanford and have yet got an answer for it. But I do believe it has to do with Hashimotos disease or hypothyroidism, most everyone that I’ve found with these internal shakes have one or the other. I started with these shakes only in my arms and chest and only noticed them when I would first wake up, and then it started in my feet and now I get them more strongly in my throat and slightly in my head,. I am a 40 year old mother of 3 and I guess consider healthy and active but mentally drained with seeing so many doctors and it has started to give me daily anxiety, these shakes can cause so much worry because you feel it and no one know what it is. These are some of the test I’ve had and all came back normal: heart monitor, stress test, eeg (nerve conduction study) MRI of brain and spine , endoscopy and colonoscopy, thyroid ultrasound, all kinds of blood test, this is just because I know doctors are gonna have you do these one by one. The only thing I can advise you is to try and not let it control you life , I definitely did and it is so frustrating and mentally draining, the unknown and worrying only makes it worst, some people who also have this say stress makes it feel stronger. It was suggested from 2 different Doctors that acupuncture would help so I thought I’d give it a try I had my first visit and have 5 more to go, I will let you know if this helps, or If I ever find anything that makes it stop lol

Jump to this post

Hello @nancgdav, welcome to Connect. I know it must be difficult when you aren't able to get a diagnosis and treatments that help.
There is another discussion that you may want to read through here:

> Groups > Brain & Nervous System > Benign Muscular Fasciculation
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

@jenniferhunter had the following post in the discussion where she shared some information that I think may be helpful for you.
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/?pg=1#comment-279251

@mdemo posted a similar question in a new discussion so may be able to share experiences and symptoms with you and @amtxo1989 here.

REPLY
@johnbishop

Hello @nancgdav, welcome to Connect. I know it must be difficult when you aren't able to get a diagnosis and treatments that help.
There is another discussion that you may want to read through here:

> Groups > Brain & Nervous System > Benign Muscular Fasciculation
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

@jenniferhunter had the following post in the discussion where she shared some information that I think may be helpful for you.
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/?pg=1#comment-279251

@mdemo posted a similar question in a new discussion so may be able to share experiences and symptoms with you and @amtxo1989 here.

Jump to this post

Thanks John

REPLY
@joyg

Hi amtxo, I have experienced the internal tremors as well. It is in the back of my head, spine and hips. I have hashimotoe's (autoimmune thyroid disease) but not hypothyroid as of yet that I know of. I also experience neuropathy and weird imbalance issues like I am walking on sand or bouncing up and down really fast even though I am walking on normal ground and not bouncing! It's worse after using elevators and wearing heeled shoes. I have no diagnosis yet but I wanted to let you know that internal tremors I looked up may be harmless. I to do not know what causes it but I will keep you updated as I am undergoing test and treatments.

Jump to this post

Hello,
Not sure if you’re still following this site but I’ve been having some weird sensations of the ground moving up and down side to side and it hasn’t gone away in over two months. I have internal vibrations as well random numbness random times that I can’t swallow. All of my blood work looks great Mri’s are great and I even had an EEG done came out normal. Did you find out a diagnosis yet ?

REPLY

I had those as well before I was diagnosed with Hashimoto's Disease. Diagnosing it is often difficult because the symptoms can be so random and seemingly unrelated and only make sense after the diagnosis. I even had the tilt table test done at Mayo and that proved to be no help other than to say I had Postural Tachycardia Syndrome. I can only say ask you doctor to specifically test for the Thyperoxidase level. Only that will tell you if it is in fact Hashimoto's. I only found out that I had it because a cat bit me and the bite became an infection in my blood within 24 hours that hospitalized me. While I was an inpatient at that hospital a doctor who wasn't assigned to my case and didn't know me happened to look at my chart at the desk and came into my room to ask if I had been tested for Graves Disease. I told him I'd never heard of it and he told me to go to an Endocrinologist. Don't give up hope for an answer. I literally stood up in front of my Endo and did a dance of joy when he gave me the diagnosis, thrilled to finally have a disease with a name because if it had a name I could do something about it and I was not a hypochondriac. Having been active in my system for 7 1/2 years before I was diagnosed it caused some permanent damage like insulin resistance but all i all I am 75% better than I was before. I hope you find an answer soon.

REPLY
@nancgdav

Hi @amtxo1989 , I saw your post and can totally relate to your symptoms I have been struggling with these internal vibrations ( feels like a cell phone or bumblebees) for about 6 years, and have seen every type of doctors for it, including going to Stanford and have yet got an answer for it. But I do believe it has to do with Hashimotos disease or hypothyroidism, most everyone that I’ve found with these internal shakes have one or the other. I started with these shakes only in my arms and chest and only noticed them when I would first wake up, and then it started in my feet and now I get them more strongly in my throat and slightly in my head,. I am a 40 year old mother of 3 and I guess consider healthy and active but mentally drained with seeing so many doctors and it has started to give me daily anxiety, these shakes can cause so much worry because you feel it and no one know what it is. These are some of the test I’ve had and all came back normal: heart monitor, stress test, eeg (nerve conduction study) MRI of brain and spine , endoscopy and colonoscopy, thyroid ultrasound, all kinds of blood test, this is just because I know doctors are gonna have you do these one by one. The only thing I can advise you is to try and not let it control you life , I definitely did and it is so frustrating and mentally draining, the unknown and worrying only makes it worst, some people who also have this say stress makes it feel stronger. It was suggested from 2 different Doctors that acupuncture would help so I thought I’d give it a try I had my first visit and have 5 more to go, I will let you know if this helps, or If I ever find anything that makes it stop lol

Jump to this post

Hi@nancgdav your story sounds extremely like mine! I too suffer daily with internal shaking that causes me daily anxiety at work…which makes it even worse of course. I find the shaking worse when i'm tired as well. I have seen numerous doctors and gone through the run of tests, none of which flag anything. Every doctor I have seen are perplexed by the internal vibrations and can't seem to explain it. I was going to start acupuncture too as an option and wondered how your experience had been with it? I'm almost a year into these symptoms and i'm so tired of the worry/struggle to find a solution. Thanks!

REPLY
@jbug

Hi@nancgdav your story sounds extremely like mine! I too suffer daily with internal shaking that causes me daily anxiety at work…which makes it even worse of course. I find the shaking worse when i'm tired as well. I have seen numerous doctors and gone through the run of tests, none of which flag anything. Every doctor I have seen are perplexed by the internal vibrations and can't seem to explain it. I was going to start acupuncture too as an option and wondered how your experience had been with it? I'm almost a year into these symptoms and i'm so tired of the worry/struggle to find a solution. Thanks!

Jump to this post

Hi @jbug, Welcome to Connect. There is another discussion that you and other members here with similar internal shaking systems may want to join.

> Groups > Brain & Nervous System > Monthly shaking episodes that continue to progress
https://connect.mayoclinic.org/discussion/monthly-shaking-episodes-that-continues-to-progress/

I’m also tagging @hopeful33250 to see if she might have some more thoughts. You mentioned that you have seen numerous doctors but they have not been able to come up with a diagnosis. Mayo Clinic is very good at diagnosing hard to diagnose condtions. If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

REPLY
@johnbishop

Hi @jbug, Welcome to Connect. There is another discussion that you and other members here with similar internal shaking systems may want to join.

> Groups > Brain & Nervous System > Monthly shaking episodes that continue to progress
https://connect.mayoclinic.org/discussion/monthly-shaking-episodes-that-continues-to-progress/

I’m also tagging @hopeful33250 to see if she might have some more thoughts. You mentioned that you have seen numerous doctors but they have not been able to come up with a diagnosis. Mayo Clinic is very good at diagnosing hard to diagnose condtions. If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Jump to this post

Thank you @johnbishop for the information!

REPLY
Please login or register to post a reply.