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.

@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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Hello @jewles63, You haven't posted in awhile and I was wondering how you are doing with your neuropathy and other symptoms. Are you still on Gabapentin for your neuropathy pain symptoms? Have your doctors found anything else on the heart palpitations or internal vibrations?

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@dalmdal

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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Hello @dalmdal, Welcome to Mayo Clinic Connect. While we wait so see if @jsrbr replies to your post wondering it they have received a diagnosis for symptoms similar to yours, there are other discussions on Connect you may find helpful.

— Internal vibrations: https://connect.mayoclinic.org/discussion/internal-viberations/
— GI Disorder and Internal Shaking: https://connect.mayoclinic.org/discussion/gi-disorder-and-internal-shaking/

You mentioned that no one can figure out what's wrong. Have you thought about seeking help at a major teaching hospital or the Mayo Clinic?

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@grandmar

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)

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Hi, Over a year later , 4 more Drs after being hospitalized for chest pain for 4 days and still no answers. Referred me to Shands Gainsville Fl and did find a dr for the chest pain ,4 heart meds later for possible micro vascular disease causing heart spasms as for the vibration it’s still going strong driving me crazy. I was switched from Gabapentin to Lyrica this last month but really no change just worse headaches. My neurologist referred me to Mayo Jacksonville Fl so I wait for an appointment . We will see !!!

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@jewles63

Hi, Over a year later , 4 more Drs after being hospitalized for chest pain for 4 days and still no answers. Referred me to Shands Gainsville Fl and did find a dr for the chest pain ,4 heart meds later for possible micro vascular disease causing heart spasms as for the vibration it’s still going strong driving me crazy. I was switched from Gabapentin to Lyrica this last month but really no change just worse headaches. My neurologist referred me to Mayo Jacksonville Fl so I wait for an appointment . We will see !!!

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@jeweles63. Please keep us posted. My heart goes out to you for dealing with for so long

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Good choice for Mayo Clinic at Jacksonville. It is surprising the doctors don't all have the answers right a way. Everyone is different at times. Your lifestyle choices are part of the equation so you need to learn about eating as well. Always try to talk to a nutritionist in addition to the doctors. Dorisena

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@doxyjune

Hi I also have internal shakiness but I call it electricity. Not sure if we have the same symptom. I have it in my legs (calves) bad and over the last few years in my hands. It gets much worse if I don't sleep well. I also need pain killers for it as the vibrations don't stop and the shakiness is also painful after I start feeling it for 5 minutes. Nothing else has helped me. I am also hypothyroid. It was also spreading to the bottom of my lumbar. I had that for a week and I did read on line that there is not enough calcium in your body and the nerves are not connecting and can cause this tremor. This person recommended taking Tums – since I was desperate for it not to be in another spot in my body I did take Tums , the first 2 weeks every day just 2 or 3 at the most. And believe it or not that stopped the vibrations in my lower back. Who knows? I now take Tums about 3 or 4 times a week to make sure, if they are helping to stop this weird electricity, that I have enough calcium in my system. Maybe it is part of a calcium issue? NO dr. in 20 years has any idea why this happened but it happened to me at the exact same time my thyroid went. I am sorry that this is going on at only 28, but maybe the Tums might help you.

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Have they tested your calcium levels? Calcium is necessary for the movement of the muscles, including your heart (which is a muscle). Without enough calcium your heart can stop…

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