Thyroid? Or something else? Constant internal shakiness

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?

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.

Do they have a Mayo Clinic in Ohio?

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

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.

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?

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!