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.

Hi @blarney2020 and welcome to Connect. I can only imagine what it feels like to have anxiety from these internal tremors while on Synthroid.

Fellow Connect members @hope58 @jewles63 and @khali have experience with internal shakiness and may be able to offer their support.

I also wanted to share this link of the Diabetes & Endocrine System group where you can find Connect members talking about thyroid conditions and synthroid use: https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

Back to you @blarney2020 how long have you been experiencing the internal shakiness? Based on what you said in your post, would it be accurate to say this is a recent development?

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@blarney2020

56 Year Old Male on Synthroid for 20 years. I had a Thyroid Storm in 2018 that went undetected for 10 months causing heart issues, terrible rashes, anxiety and anxiety attacks, etc. It took another year to get my Thyroid numbers normalized. Now I am left with internal shakiness/ feelings of weakness – especially in the morning. I'm taking Lexapro daily and Lorazepam when needed to deal with the anxiety from the internal issues. Daily issue, sometimes leading to panic attacks. Any thoughts anyone?

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Hi, sorry to hear you feel so bad, i feel horrible too with the internal shakiness that sometimes cause also cardiovascualr issues where i do not feel right, hard to describe, now it is worse but i have this since 2013 but then it went away and resurface this year worst than ever, been to the neurologist and did lots of tests, also an MRI and an MRA all well, been to 9 endocrinologists and they are all ignorant about Hashimoto's they are fixataed on diabetes mostly. This past months my thyroglobulin antibodies have been going up from Jan 135, Feb 173 and yesterday 206 but my TSH was 2.200 so i do not take any thyroid medicine since the tsh never goes up although i feel better when it is very low like 1.1 or so. If you find anything that helps let me know please, i also have Tinnitus that makes it worse. I follow the Paleo diet with no gluten, dairy, any additives, or preservatives etc and take like a lot of supplements like zinc, selenium, NAC, and others. well bye

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Hi,

I had graves disease at age 30, and swallowed radio active iodine. Battled my thyroid for 24 years now. Internal shakiness….increased heart rate… I have that when I'm 'too fast', which is rarely. I'm overweight now, I blame forgetting to take my levothyroxine. I'm on levothyroxine. 125. I'd like to lose 15 more lbs. My blood sugars have been a bit off lately, I'm blaming my recent shakiness on that. Hoping that you find answers and good health.

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Am sorry we’re both having to deal with this mysterious issue. I had to read your comment as if it was my own thoughts because we both have the exact ordeals going on and have address them the same way by contacting the doctors. You’re correct we are not no where near crazy but people tend to not want to hear it and love leaving it upon deaf ears.
I thought I was the only person to have experience what doctors calls Functional Tremors? All my test are normal even the Thyroid one! Am 55 years in age and still feels and looks great besides having the shakiness that go with this on a daily base and true some days are worse than others along with my blood pressure swinging up and down with a rapid heartbeat 💗 Nothing seems to help it ?!??!
I do know my body feels like it’s stuck in Flight and Fight mode sorta mimic anxiety or something close in that nature.
I have a great live and never ever stressed so am clueless as to why this is happening to me out of thin air?!?? I hope we find an answer and soon! Please do keep me posted and I’ll do same for you. Thanks for sharing your story and hope you’ll get better ASAP!🤗

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@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.

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Do they have a Mayo Clinic in Ohio?

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@ebe

Do they have a Mayo Clinic in Ohio?

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Hi @ebe, Welcome to Connect. Mayo Clinic has facilities in Minnesota, Arizona and Florida but they also have the Mayo Clinic Care Network which is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise — https://www.mayoclinic.org/about-mayo-clinic/care-network/members

I found one in Ohio – Blanchard Valley Health System — https://www.bvhealthsystem.org/

Has your doctor suggested any other possible tests to help with a diagnosis or treatment?

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@khali

Hi, sorry to hear you feel so bad, i feel horrible too with the internal shakiness that sometimes cause also cardiovascualr issues where i do not feel right, hard to describe, now it is worse but i have this since 2013 but then it went away and resurface this year worst than ever, been to the neurologist and did lots of tests, also an MRI and an MRA all well, been to 9 endocrinologists and they are all ignorant about Hashimoto's they are fixataed on diabetes mostly. This past months my thyroglobulin antibodies have been going up from Jan 135, Feb 173 and yesterday 206 but my TSH was 2.200 so i do not take any thyroid medicine since the tsh never goes up although i feel better when it is very low like 1.1 or so. If you find anything that helps let me know please, i also have Tinnitus that makes it worse. I follow the Paleo diet with no gluten, dairy, any additives, or preservatives etc and take like a lot of supplements like zinc, selenium, NAC, and others. well bye

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I’m sorry. I know these internal tremors all too well since nov 2019. They did start when I was finding out about all my heart blockages. I had 2 stints places in December 2019. And they reduced in severity but were still pretty strong. I had my last stint placed in yesterday March 6. And they immediately reduced in severity. Not gone but really almost. My left foot has the worse pulse and that where I have most of the internal tremors since yesterday. I have juvenile diabetes 34 years. A low thyroid condition but the TSH they have ran although indicates to lower my thyroid medicine over the years 3 times…it still shows I require 100 micrograms I think it’s called. I’m visually impaired so please excuse typos. I feel most of this is heart related as I’ve seen the regression of severity and the area of the body was like heart all the way down including arms legs etc when these tremors started. That’s just all I know. I’ve had my neurologist do a battery of tests too. My heart tests were the ones I had failed. But today, for the first time I feel good after 3 total stints. Almost felt I could leap tall buildings😂😂😂 but at 58 and with a knee and biceps issues I can’t really. I know how these feel. They drive you to seek answers on the internet when your doctors have no clue. My general practitioner says he thinks they’re nerve damage. Of which I do have neuropathy in my feet and hands. I’m anxious to tell him they’ve improved in severity a second time right after this last stint. I’m going to try the massage the left foot and bring circulation the best I can. Drink lots of water. That’s the only thing I recommend too. Take care.

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@hope58

I’m sorry. I know these internal tremors all too well since nov 2019. They did start when I was finding out about all my heart blockages. I had 2 stints places in December 2019. And they reduced in severity but were still pretty strong. I had my last stint placed in yesterday March 6. And they immediately reduced in severity. Not gone but really almost. My left foot has the worse pulse and that where I have most of the internal tremors since yesterday. I have juvenile diabetes 34 years. A low thyroid condition but the TSH they have ran although indicates to lower my thyroid medicine over the years 3 times…it still shows I require 100 micrograms I think it’s called. I’m visually impaired so please excuse typos. I feel most of this is heart related as I’ve seen the regression of severity and the area of the body was like heart all the way down including arms legs etc when these tremors started. That’s just all I know. I’ve had my neurologist do a battery of tests too. My heart tests were the ones I had failed. But today, for the first time I feel good after 3 total stints. Almost felt I could leap tall buildings😂😂😂 but at 58 and with a knee and biceps issues I can’t really. I know how these feel. They drive you to seek answers on the internet when your doctors have no clue. My general practitioner says he thinks they’re nerve damage. Of which I do have neuropathy in my feet and hands. I’m anxious to tell him they’ve improved in severity a second time right after this last stint. I’m going to try the massage the left foot and bring circulation the best I can. Drink lots of water. That’s the only thing I recommend too. Take care.

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Hi, @hope58 – you may also be interested in checking out this discussion in the Brain & Nervous System group on internal vibrations https://connect.mayoclinic.org/discussion/internal-viberations/.

Another Connect group, Neuropathy, has many different discussions related to this condition, and thought you might like to look it over and participate https://connect.mayoclinic.org/group/neuropathy/.

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@johnbishop

Hi @ebe, Welcome to Connect. Mayo Clinic has facilities in Minnesota, Arizona and Florida but they also have the Mayo Clinic Care Network which is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise — https://www.mayoclinic.org/about-mayo-clinic/care-network/members

I found one in Ohio – Blanchard Valley Health System — https://www.bvhealthsystem.org/

Has your doctor suggested any other possible tests to help with a diagnosis or treatment?

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This is what is available in Central Ohio. Cleveland Clinic has a lab in Columbus and cooperates with local doctors with their testing. They are also well known for Parkinson's treatment in Cleveland Clinic. The James at Ohio State University is renown for cancer treatment and has built another new hospital. Riverside Hospital in Columbus is associated with MDAnderson in Texas for cancer treatment. It is common for local doctors to consult with doctors at the famous clinics for help and referrals. Thanks for mentioning Blanchard Valley Health, as I had not heard about it. Orthopedic doctors are a dime a dozen in Columbus area if you want replacements.
Endocrinologists are few and they provide the same treatment I have read about on this web. Mine dismissed me because my blood sugar was below 7.0 on my AIC. I have my fasting blood sugar at 108 in the morning now and if I do daily chores and exercise, I can manage to keep it down to a level which satisfies me for now. I am trying to lose some weight and my blood pressure is lower. I can't wait to plant some vegetable seeds in my benches. That is the best therapy for me. Dorisena

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@ambrose

I have had Hashimoto's for more than 30 years. Diagnosed by an endocrinologist in the early 90's. Levothyroxine overdose was the cause of much more violent internal "earthquakes" (is what i called them) for me. A functional Dr. (I found after 10 years of suffering and being told it was all in my head), switched me to Armour Thyroid (desiccated pig thyroid) – and I was a right as rain. He said that some people (like 10%) have trouble with the conversion of T4 to T3 (Levothyroxine is T4). Armour is a combination of T3 and T4. Most people can convert Levo (T4) to T3 as necessary. But he explained, that with an autoimmune disease like Hashimoto's AND with someone with conversion problems, the thyroid is still producing thyroid hormone – only the immune system is killing it before it can get to the cellular level where we "feel" better. Sometimes, he further explained, some of the natural thyroid hormone gets through and when combined with supplemental thyroid hormone, we can go into a state of "Thyroid Storm", or overdose. One theory was perhaps the immune system gets distracted from killing thyroid hormones, as in fighting an infection, etc., and the natural hormone is not destroyed, gets through the immune attach, mixes with the added / supplemental hormone, and bang – you have these "overdose" symptoms. Other causes can be in mixing T4 with for instance calcium supplements (the Tums are mostly calcium). There is definitely a calcium connection with the thyroid, / taking thyroid supplements. There is also a salt connection, particularly if you eat the common sodium chloride salt (AKA table salt). I had the most terrible thyroid storm once (with levo) after eating a huge hot dog, that was particularly salty. Same with taking calcium supplements at the same time as levo. That was way before they began to put the sticker on prescription levo / Armour, re: "do not take with calcium supplements". There has also been study after study that warns of using Flouride Bromide, or chloride (chlorine), (AKA Halides) as they can displace / attach themselves to the iodine receptors of the thyroid and again wreak havoc on the endocrine system, and any attempts we may be making towards supplementing an autoimmune disorder such as Hashimoto's. Health industry advocates would also point to stressed adrenals, however, mainstream medicine still does not recognize adrenals as contributory, for the most part. If one was to address adrenals, then things like coffee, alcohol, and other stimulants would be avoided. My experience in dealing with Hashimotos for all these many years is to eliminate as many inflammation-causing foods as possible (alcohol being number one – darn it!). Gluten / processed and fast foods being a close second. So many inflammation avenues that one must consider when dealing with any autoimmune disorder. And with Hashimotos, you must have a thyroid replacement hormone – you won't have any semblance of a normal life without it. The unbelievably sad part is – even if you find an endocrinologist who will run the thyroid antibodies test. (TSH, T3, T4 test alone won't find Hashimotos). they don't seem to want to do it! Recently had a family member who cannot pin down the many obviously hormone-related problems she is having, finally secured an appointment with an endo, and he actually said, "So what if we do find Hashimotos?" "There is no cure for it!" "Why do you want to know?" While there probably is no cure (There are those who say it is possible to put autoimmune into remission) – there is treatment! Thyroid Replacement Hormone!
The constant internal shakiness is most probably an imbalance of T3 / T4 in someway – regardless of whether it is undermedicated, overmedicated, or not medicated at all – or of an interference with replacement hormone, like calcium, fluoride, bromide (found in flour – "Bleached wheat flour" in the US – outlawed int the UK). That has been my painfully acquired education and experience. The good news? Once you start paying attention to when / how these episodes occur, (assuming you do have supplemental thyroid hormones of some sort) – life with Hashimotos can be fairly close to normal wonderful!

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Hi, no, i don't use any thyroid hormone and yes my ft3 is not in the proper level the ft4 in ok in this last lab two days ago, my rt3 it fine at 11 and i don't eat any bread or anything with flour, gluten, dairy, additives, colorings etc i follow the AI Paleo diet and this shakiness is a mistery, i live in puerto rico and there are not functional doctors that know about Hashimoto's will have to see if i can fly to Fla or other place and see if they can help me because i can't take it much longer, it is worst at night it does not let me fall asleep, been to nine (9) endocrinologist and they are clueless regarding Hashimoto's. thanks for your feedback

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@Erinmfs

Hi,

I had graves disease at age 30, and swallowed radio active iodine. Battled my thyroid for 24 years now. Internal shakiness….increased heart rate… I have that when I'm 'too fast', which is rarely. I'm overweight now, I blame forgetting to take my levothyroxine. I'm on levothyroxine. 125. I'd like to lose 15 more lbs. My blood sugars have been a bit off lately, I'm blaming my recent shakiness on that. Hoping that you find answers and good health.

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I was diagnosed with Graves too, did the radioactive pill too, and also had the episodic shakiness/accelerated heartbeat for a long time. Thyroid tests said all was well with the Levoxyl dosage. In the past blood pressure always low, now often high. Tendency to gain weight. Doc tried blood pressure meds which made me sick as a dog. About 5 years in severe aching joints set in. Doc said 'Oh, it's probably just arthritis – here have some pain pills.' ( I declined the pain pills) This pain went on for about two years getting worse by degrees.
Cut to the chase – when the dosage was lowered all this cleared up. In 45 days I felt better than I had in years. Shakiness/accelerated heartbeat went away. About eight months after lowered dose the joint pain decreased bit by bit. Took two and a half years for it to go away entirely. And by the way the circular that came with the medication says to contact your doctor if joint pain sets in. Duh…wonder how we got into an opioid crisis.

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@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!

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Was wondering if you ever found anything else out about your internal vibration? I have had a heavy vibration that is intermittent on my left side, mostly on the left side of my chest, my left elbow area and my left thigh and knee for about seven months. They have done CAT scans with and without contrast, MRIs with and without contrast on the brain neck and cervical spine and found nothing. I’ve had so much blood work done I don’t even know where to begin and everything is normal. I do have nodules on my thyroid That are benign and we monitor those yearly, that’s the only thing I can relate to anyone else that seems to be suffering from this condition. The neurologist said he doesn’t know where else to look. I’ve been to a cardiologist and everything there comes out normal as well

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Was wondering if you ever found anything else out about your internal vibration? I have had a heavy vibration that is intermittent on my left side, mostly on the left side of my chest, my left elbow area and my left thigh and knee for about seven months. My blood pressure also sky rockets then back to normal. They have done CAT scans with and without contrast, MRIs with and without contrast on the brain neck and cervical spine and found nothing. I’ve had so much blood work done I don’t even know where to begin and everything is normal. I do have nodules on my thyroid That are benign and we monitor those yearly, that’s the only thing I can relate to anyone else that seems to be suffering from this condition. The neurologist said he doesn’t know where else to look. I’ve been to a cardiologist and everything there comes out normal as well

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I have had similar experiences with pain meds for arthritis and high blood pressure. My biggest complaint is that doctors wait until you are quite ill, then they diagnose you and prescribe the pills. My former doctor used to say it was a good idea to lose some weight, and encouraged me. My current, pleasant doctor doesn't suggest anything but prescribes pills. He does not check to see how I am reacting to the drugs, and prescribes them indefinitely. He wanted me on opioids for four months before he would order an MRI on my back. I talked my way into the surgeon's office and had the MRI. Even at that rate it took six months to schedule surgery. I was in awful pain for almost a year until I called the emergency squad one day and said "that's it.! I can't live with this pain any longer." The emergency room admitted me for three days and then sent me to a nursing home and then had my family return me for the surgery. Ever since my science professor in college described the word "benign" to the class, I have not had any faith in the use of the word. A growth is a growth and it is a DNA change and it grows, maybe slowly or maybe not. At some point it may become cancerous, who knows. I have had three cancer surgeries and I am currently in pretty good health for my age. I would not be surprised if I get more cancer, but it may not be discovered soon enough. I no longer worry about it. But I wouldn't want to live with growths on my thyroid. They removed my thyroid and damaged my vocal chord. I can't sing but I can still type pretty well.
And I am planting lots of seeds to grow in my greenhouse. I have lots of plans for the few years I have left. Dorisena.

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@hope58

I’m sorry. I know these internal tremors all too well since nov 2019. They did start when I was finding out about all my heart blockages. I had 2 stints places in December 2019. And they reduced in severity but were still pretty strong. I had my last stint placed in yesterday March 6. And they immediately reduced in severity. Not gone but really almost. My left foot has the worse pulse and that where I have most of the internal tremors since yesterday. I have juvenile diabetes 34 years. A low thyroid condition but the TSH they have ran although indicates to lower my thyroid medicine over the years 3 times…it still shows I require 100 micrograms I think it’s called. I’m visually impaired so please excuse typos. I feel most of this is heart related as I’ve seen the regression of severity and the area of the body was like heart all the way down including arms legs etc when these tremors started. That’s just all I know. I’ve had my neurologist do a battery of tests too. My heart tests were the ones I had failed. But today, for the first time I feel good after 3 total stints. Almost felt I could leap tall buildings😂😂😂 but at 58 and with a knee and biceps issues I can’t really. I know how these feel. They drive you to seek answers on the internet when your doctors have no clue. My general practitioner says he thinks they’re nerve damage. Of which I do have neuropathy in my feet and hands. I’m anxious to tell him they’ve improved in severity a second time right after this last stint. I’m going to try the massage the left foot and bring circulation the best I can. Drink lots of water. That’s the only thing I recommend too. Take care.

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OMG. I am so glad I found this group. This internal trembling started 12 days ago. It made my BP and heart rate shoot up. I am 71 and in 4.5 years remission from Non-Hodgkins Lymphoma and chemo. From the chemotherapy, I got peripheral neuropathy on feet and ankles. I learned to live with that, but now this. When it happened in the middle of the night and I tested my bp which then had shot up to 167/110 and puls 112 I took myself up to the local A and E. I had an ECG which was normal and blood test which showed the TSH not normal. I am going back to the doctor on 18/3/20 to see what this is. The doctors at the hospital had no idea what I was talking about when I mentioned these internal tremors, so I then got even more nervous. So it is a vicious circle. I get the tremors when I go to bed which makes it hard to relax and sleep. I can manage during the day, but now I am housebound due to the Coronavirus Covid 19, as all elderly have been told to stay in here in London UK. I go for walks anyway along the river, just not mingling with people, and I have no balance problems. I can not describe how I feel. It is like super fast trembles and it is mainly my torso but sometimes I can feel it in my calves. and sometimes in my scalp. It is a horrific feeling. I feel at a loss. It is obviously the thyroid causing this but my sister had her thyroid removed and she never had these trembles. Could it run in families, as my mother too had bad thyroid issues and had her thyroid removed? But will it ever go away, I ask myself. The trembles sometimes are worse than other times. For me, this is at night. Has anyone got an explanation from any medical professional? I am, they say going to have a mobile ECG, so they can monitor my heart over a 24 hour period. I have had these tremble for about two weeks now. But looking back I think I had a mini tremble just once about 7-9 months ago. It never was bad and I took it as an anxiety thing. I am an anxious person anyway, so I have to meditate and breathe deeply several times a day. Any comments are welcome.

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