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.

@mitou48

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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Hello @tcheetz28 and @mitou48 I would like to welcome you to Mayo Clinic Connect along with the other members in this discussion. @hope58 has a really good suggestion for overall health that I seem to constantly have to remind myself — drink lots of water.

Did you happen to see the post by @lisalucier earlier in this discussion? She mentions the follow discussion and group that may help you find some answers. Here are the links from her earlier post.

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

Hello @tcheetz28 and @mitou48 I would like to welcome you to Mayo Clinic Connect along with the other members in this discussion. @hope58 has a really good suggestion for overall health that I seem to constantly have to remind myself — drink lots of water.

Did you happen to see the post by @lisalucier earlier in this discussion? She mentions the follow discussion and group that may help you find some answers. Here are the links from her earlier post.

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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Something hacked my computer and I was blocked, with a loud noise and message to call this phone number, which I knew not to do.
I shut down the computer and later my daughter rebooted it and everything seems fine now, but my family wants me to stay off sites like this one to avoid hacking and blocking. Since I am feeling pretty well, I may not participate much and I want everyone to understand.
Computers are a problem for me to understand and I prefer the simple life, actually. Thanks for your support. Dorisena

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@dorisena

Something hacked my computer and I was blocked, with a loud noise and message to call this phone number, which I knew not to do.
I shut down the computer and later my daughter rebooted it and everything seems fine now, but my family wants me to stay off sites like this one to avoid hacking and blocking. Since I am feeling pretty well, I may not participate much and I want everyone to understand.
Computers are a problem for me to understand and I prefer the simple life, actually. Thanks for your support. Dorisena

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Oh, @dorisena , don’t go! I understand the confusion and anxiety that comes with being hacked by a stranger or who knows what! This site has been carefully set up and monitored to prevent trolls and hackers from having access. I hope you’ll reconsider and stay with us. You always have great comments

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@dorisena

Something hacked my computer and I was blocked, with a loud noise and message to call this phone number, which I knew not to do.
I shut down the computer and later my daughter rebooted it and everything seems fine now, but my family wants me to stay off sites like this one to avoid hacking and blocking. Since I am feeling pretty well, I may not participate much and I want everyone to understand.
Computers are a problem for me to understand and I prefer the simple life, actually. Thanks for your support. Dorisena

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Hi @dorisena — Sorry to hear about the malware that was put on your computer. Most of these types of programs get installed when you click on a bogus search link or sites like Facebook. Mayo Clinic Connect most definitely did not cause the popup. These types that popup with a phone number to call are generally tech support scams trying to get you to give them a credit card or let them remote into your computer to steal information and more. You did great by just shutting down the computer and rebooting it. After something like that happens you may want to have your daughter or a techie friend if you have one clear the cache on your web browser program (unless you want to give it a try…it's not too hard). Here's a link to a PC Magazine page that has steps and pictures on how to clear the cache with Google Chrome, Microsoft Edge and other browsers that you may be using:
https://www.pcmag.com/how-to/how-to-clear-your-cache-on-any-browser
Hope you stay with Connect!

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I would never give a credit card or information to anyone on the web and I have never used Facebook which my friends think is silly to avoid. I protect my security very well and don't believe this site had anything to do with the scam. I do not keep my financial records on my computer. I get four scam phone calls a day and now my screen on my phone is listing some of them as potential scams, which helps me to not answer. I can't understand them anyway but I don't get much communication anymore and wonder why I have a phone some days, except to wake me up when I take an afternoon nap. Being isolated these days is the pits. My daughter brought me some bananas this morning after she did early voting. I feel like a teenager who has been grounded for daring to go someplace in my car. I started knitting a pair of sox today. Tomorrow I think I will bake bread. When it rises, life seems more normal. Dorisena

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@jsrbr

I think this is what I have as well. Mine happens at night and wakes me up with this strange shaking feeling inside my body. I first noticed it in my chest so thought I was having SVTs or something (I have Graves). But in the past few weeks it has moved into my head and neck. It makes me very anxious, can cause dizziness and also like I want to get up and move around to make it go away. I cannot sleep a normal night anymore they have gotten so bad. I see an endocrinologist so hoping she has some answers. Doe anyone also consult a functional medicine doctor for their auto-immune disease? I am currently seeking one that has experience in Graves and would appreciate any info. Thank you.

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I have Hashimoto's although i do not take any medication for it, don't need it yet, check to see if you might have nodules in your thyroid because i suffer with those shakiness feelings and have many nodules and when they shed hormones makes me very hyper and with those feelings, i am having a FNA to see if they are benign or not

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@ethanmcconkey

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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I had a thyroid storm in the summer of 2018. It tool 12 months to get my thyroid in range. I developed an anxiety disorder and shakiness and have them both for a year now. Morning are the worst.

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@dablues

Since November I've been to the ER 3 times for acute anxiety. Blood Pressure was out of bounds. I have the shakiness inside too and the anxiety drugs they gave me at the hospital doesn't work. I also have hypothyroid but don't know if that is the problem. Thyroid tests come back in range, but the doctor keep me in the low range and I don't know why. I'm have a lot of problems and the shakiness is just one of them.

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Did you get any help?

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@socalgirlntx

I'm so sorry for the difficulty you are experiencing. I have had Grave's disease for about 20 years. About a year ago I switched from hyperthyroid to hypothyroid as my thyroid has "burned out". Apparently this can happen after years of making too much thyroid. The only way that I discovered the change was because I had a sudden onset of high blood pressure. My BP is normally on the low side, so this was really unusual. After describing other symptoms, like dry skin, dry eyes and dry mouth, my doctor ordered some thyroid tests. I was low on thyroid and my TSH was through the roof so my doctor started me on a low dose of thyroxodine. Amazingly, my BP immediately went back to my normal normal lower BP.

I was curious if you have been put on any kind of thyroid replacement and if you have, has it made any difference? Hoping things improve for you. When the thyroid is out of whack, it seems like everything is out of whack. Good luck. Donna

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What did the Thyroxodine do for you?

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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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You switched from Levo to Armour to improve your T4 to T3 conversion. Did the change remove your internal shakiness? P.S. your write-up is excellent.

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@ambrose

You will get better when you get thyroid replacement hormone – I know it took me 10 years to finally find an endo who would test something other than TSH, T3, and T4. You must have the test for TPO antibodies. The ending who finally and kindly listened to me had me collect urine for a week. And yes, then my “borderline” thyroid disfunction” was diagnosed as Hashimotos and I was given Levothyroxine – and probably overdosed – which is even worse! Ended up on Armour Thyroid for 30 years, (tinnitus never stopped) now am back on a much lower dose of Levo. Recently discovered that most people with Hashis also have adrenal problems (craving salt is a tell-tale). Started treating adrenals by taking Fulvic minerals. Calms jitters within the hour – like 1 oz of liquid minerals. wonderful stuff! After 30 years researching this on my own I’ve discovered the root cause is probably in the gut and with the liver. I have begun and tried all sorts of natural protocols like ginger tea and probiotics. Every little bit helps! Hope this helps you! Please write and tell us what works for you all we have is each – other the medical community is ignoring Hashimoto’s and has been and it’s becoming pandemic.

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My Endo did not find Hashimoto's and Graves, but I have all these symptoms discussed herein. Had T-Storm in 2018 and left with Anxiety Disorder and internal shakiness 2 years later. Terrible internal shakiness in the morning. Did I have nerve damage? Reduced my Levo from 175 to 125. Gained weight, but 50% reduction in shakiness. Please keep writing, you are the best!

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@blulilbaby

I had this problem as well. A neurologist diagnosed it as Essential Tremors and put me on medication to control them. Some days I could hide them really well but as the day went on they became worse and my hands would shake so badly I just opted to stay home more and more often. They felt the same on the inside as they looked on the outside. Some days I was so off balance form them that I would actually fall in my home. I was misdiagnosed for 7 1/2 years from everything to MS to Fibromyalgia and Chronic Fatigue. I went through the Mayo Clinic Pain program and even Mayo missed it. I have Hashimoto's Disease. All of the symptoms sound completely unrelated because they cover a very large spectrum. Once diagnosed and correctly medicated the tremors got much better. I opted to remove my Thyroid (my choice, not done at the physicians urging) after 7 months into treatment because leveling out my medication was really difficult after so many years of damage. It's a good thing that I did because the pathology showed Stage One Papillary Cancer that we didn't even suspect that I had. You should go see an Endocrinologist specifically one who deals with Hashimoto's Disease. One simple blood test will confirm or dismiss the diagnosis. My Endocrinologist said that he once saw maybe 1 or 2 people get the diagnosis every few months but he is seeing more and more women developing the disease. I removed my Thyroid 2 years ago and I am glad to say that the tremors disappeared completely soon after surgery. Hashimoto's Disease does not specifically list tremors/essential tremors as a symptom but I know a few people in Orlando who had the same experience that I did even thought they both still have their Thyroid. Go to the Mayo web site's search bar and type in Hashimoto's Disease you can read all of the symptoms and other information. I hope you do not have HD but if you do I assure you there is an end of the road with the struggle with the tremors and one simple blood test can change your entire life. Good Luck!

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Can I please ask how your feeling now and if you were put on meds and what kind of meds? Thank you!!! So happy you're doing better.

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@ebby2121

Can I please ask how your feeling now and if you were put on meds and what kind of meds? Thank you!!! So happy you're doing better.

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Hello @ebby2121, Welcome to Mayo Clinic Connect. @blulilbaby may not have seen your question since he was not tagged with the Connect username to receive an email notification. Here is the Mayo Clinic Hashimoto's disease – Symptoms & Causes page referred to in the post for more information – https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

What symptoms are you having? Have you seen a doctor yet?

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Issue not solved. Gabapentin helps at night, but still having daytime issues of internal shakiness. I was getting relief from Lorazepam, but doesn't seam to help as much as it did initially. It's been a year now and it's now affecting every aspect of my life. Scared.

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@jsrbr

I think this is what I have as well. Mine happens at night and wakes me up with this strange shaking feeling inside my body. I first noticed it in my chest so thought I was having SVTs or something (I have Graves). But in the past few weeks it has moved into my head and neck. It makes me very anxious, can cause dizziness and also like I want to get up and move around to make it go away. I cannot sleep a normal night anymore they have gotten so bad. I see an endocrinologist so hoping she has some answers. Doe anyone also consult a functional medicine doctor for their auto-immune disease? I am currently seeking one that has experience in Graves and would appreciate any info. Thank you.

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Hi, I'm just wondering you ever got a diagnosis? I am experiencing the exact same thing, internal tremors when I'm sleeping, only in my trunk and head. I don't feel them in my limbs. I also feel the need to get up and move around and this definitely helps.

No one can figure out what's wrong . All my blood work is fine, and indicate no thyroid issues but am in Peri menopause. Started estrogen and progesterone but hasn't helped.

I'm starting to worry about MS or Parkinsons but apparently I don't have any of the other symptoms.

It's all very frustrating and scary.

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