Thyroid? Or something else? Constant internal shakiness

Hello @jsrbr, welcome to Mayo Clinic Connect. Thank you for sharing your symptoms. You might want to join in the following discussion where other members have discussed Graves Disease.

> Groups > Autoimmune Diseases > Hypo and Hyper thyroid hell!!
-- https://connect.mayoclinic.org/discussion/hypo-and-hyper-thyroid-hell/

You mentioned you are seeing an endocrinologist and hoping for answers. Are you able to discuss functional medicine options with the endocrinologist?

Mayo clinic has some information on diagnosis and treatment here: https://www.mayoclinic.org/diseases-conditions/graves-disease/diagnosis-treatment/drc-20356245

I used to have the horrid night sweats and heart palpitations too. I take a heart regulating med called Metoprolol. I had the tilt table test at Mayo and they said I had POTS (Postural Orthostatic Tachychardia Syndrome) meaning when I adjust posturally my heart rate changes. I had the dizziness to the point where I would actually have to catch myself to keep from falling as well. Ever since I have been on the med I haven't had any issues at all. My night sweats stopped when I got on a good dose of Thyroid medication. It is a good sign for me to pay attention to because if it starts again I know my meds are off and to go see my Endocrinologist to check my levels. A random doctor that wasn't even mine stopped to look at my chart one day and asked if I had been tested for Graves. That sent me to an Endocrinologist (The only specialty I had not seen) and he ran the specific blood tests for Graves, Addisons, and Hashimoto's. I swear when I went back for the results and he said I 100% had Hashimoto's I stood up right there and did the dance of joy that I had a disease! Because it turns out I wasn't imagining things or faking symptoms. It finally had a name and if it had a name I could do something about it before it killed me. A regular thyroid level will not show you whether you have it or not. You have to test specifically for those three things. SO see an Endocrinologist and when you make the appt ask if they specialize in Graves or Hashimoto's. It makes a difference. If you have it you will start on meds that will take a little adjusting to get a good level to control everything that is happening but I swear there is an end game!.I can go outside in the daytime without dying in minutes from heat intolerance. I can work a part time job now instead of being home bound. I sleep an entire night through without waking up. I haven't fallen or had a significant dizzy spell in almost 2 years. My heart palpitations have stopped completely.Removing the thyroid is NOT for everyone. If you have HD it can be managed with medication. Mine had just been undiagnosed and active for 7 1/2 years so there was just too much damage to almost everything inside my body for me to be able to manage it with just meds. I wish you luck! I don't hope that you have HD but I hope that you have HD, (You understand that. ) Most people do not know this but your Thyroid LITERALLY tells every cell in your body what to do so when it is broken everything goes haywire in your body. If it gets to the point of removal I can point you to the best doctor at Mayo in Jacksonville, Florida, to do it. He has done more than 2500 Thyroidectomy's and is the chair of the department. I went to the top guy and I am so glad that I did. It could not have turned out to have a better result for me. First step you have to go see an Endocrinologist to have the blood test. The results can literally change your life.

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!

Happy St. Patrick's Day
I think everyone is Irish on this day. lol
Anyway, due to having pink eye and just starting eye meds, I'm not going back to read all your posts. So, If I say something you already addressed, I'm sorry!

I've had a sluggish thyroid for years and years. With meds, it has kept it normal. All of a sudden, about 3 weeks ago, I went to the neurologist (will tell you about it in a minute) and she ordered blood work. My thyroid number was way, way, way low. My PCP had me take it again (3 weeks later) and the result was the same. He is reducing my dosage. It must explain why I am so tired and why when I look at food I put on 10 pounds. He will redo the blood work in 3 months after I've had time to get the new dosage. I am hoping it will arrive this week from my mail away pharmacy.

That's the story about my thyroid. Now the shaking. Another story...….
This year I've had 2 spinal surgeries (Feb. my cervical spine and Oct.my lumbar spine). As far as I am concerned they were a success because it too away the chronic pain (24/7) that I experienced for over 10 years, probably closer to 15. Just a couple of months before my lumbar surgery, I noticed that when I sat, I couldn't sway my right foot, lift my toes or move my toe at all. I also noticed that although it was not the same as the right, my left foot did not feel normal, either. My neurosurgeon took ALLLLLLL SORTS OF TESTS and could not figure it out. He said if it didn't improve after the lumbar surgery, he wanted me to see a neurologist.

Not only did my symptoms NOT improve, they were worse. I needed to use a cane to walk and I had s few falls. This is something you don't want to do after spine surgery. Off to the neurologist I went...….

During my preliminary exam she noticed my hands quivered. I did notice that starting to happen, too. My mom, son and cousin also have (or had) quivering hands. It did not prevent any of them from writing or doing anything. As a matter of fact, my mother was a typist and my son does nuclear medicine tests that require him to give injections. Neither had a problem. Then, the doctor looked in my mouth. She noticed the roof of my mouth was quivering, too. I never felt that.

She reviewed my MRI (ordered by the neurosurgeon) and noticed that a bunch of nerves are clumping together. I also still have stenosis. However, NONE of these hurt. The doctor who performed the test said I have SIGNIFICANT nerve damage coming from my lumbar spine and S1. That is all he would say. I meet with the neurologist Tuesday, followed by an appointment with the neurosurgeon. It is my hope that they will be able to give me a diagnosis (more than neuropathy in my feet) and come up with some sort of a plan of action to slow down the neuropathy.

The reason I al telling you all this is because I have some of the similar symptoms and I wanted you to know about who I have seen and tests they performed. Will share more after my appointments; that is if they give me more information.

Happy Sunday...…
Ronnie (GRANDMAr)

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.

@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.

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 .

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.

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

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.