# Need Help!



## irenakt (Mar 8, 2014)

Hello,

I am new here.  So glad to have found a place to post! I am in need of some help. I was on Synthroid for 10 years. Never really felt great, always feeling hyper, trouble sleeping, and most recently had extreme sensitivity to heat especially sun and sunlight. My endo said let's try a different thyroid med. Didn't even know there were different thyroid meds! So with Levoxyl being off the market at the time, he suggested Tirosint. So in July I began Tirosint. At the same time I had been taking Ativan for sleep for a few months because my sleep had gotten bad. I pretty much did a very rapid taper and stopped it. So the timeline is this. I switched from Synthroid to Tirosint and two weeks later stopped Ativan. And a few days after stopping the Ativan, I started getting hypnic jerks that were so severe they kept me up all night long. Any time I would lie down to go to sleep my muscles would just start jerking. My neck, my arm, my hand. It was awful. I asked at the time if it could be the Tirosint but everyone said no no it's probably withdrawal from the Ativan. So I went through this hell for two months. I saw two neurologists and everything was fine. They said withdrawal from Ativan. Then things got better for four months. Still had them occasionally but nothing that was bothering me.

In the meantime, my endo could not get my thyroid stable. He started me on the same dosage that I was on with Synthroid. 88/100. Then he increased it because my TSH was almost 4. Then I was on 100 for a few months and still couldn't get it under 3. So he bumped me to 100/112. Then I started feeling jittery and having heart palptiations. So he dropped me down to 100 daily again. Then a few weeks later I wound up in the ER with a resting heart rate of 120. It was awful. They insisted I lower my meds even further to 88/100 even though my labs were normal. My TSH at that point was 2.5. So a few weeks later the heart palps stopped with the lower meds and my TSH went down to 1.5. Then four weeks later up to 2.4 again.

Meanwhile, the hypnic jerks started back up again ever since I went to the hospital. I had been given a beta blocker there and acid reflux meds but just once. No clue why this would be going on now again. And they haven't stopped.

My endo is saying maybe it's the Tirosint since I started that at the same time also. So he's suggesting switching to Levoxyl and seeing if that is better. Has anyone heard of anything like this happening from a thyroid medication? There's nothing in Tirosint I could possibly be reacting to I don't think, right?


----------



## jenny v (May 6, 2012)

Do you have any labs you could share with us? It sounds like your doctor is dosing you off of TSH only, which is not good. You need to have Free T3 and Free T4 labs run every time and adjust your doses off of those levels. Have you also ever had anything else checked, like thyroid antibodies or your Vitamin D levels?


----------



## Andros (Aug 26, 2009)

Seizures and thyroid problems
http://advancedpsy.com/endocrine_disorders-page-36.html
(Copy and paste into your browser)

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

TBG (thyroxine binding globulin) up, hypo............down, hyper
http://www.nlm.nih.gov/medlineplus/ency/article/003374.htm
(Copy and paste into your browser)

TBII
http://www.ncbi.nlm.nih.gov/pubmed/9364248
http://en.wikipedia.org/wiki/Anti-thyroid_autoantibodies
(Copy and paste into your browser)

Also, has any doctor run your FREE T3? What lab tests have you had done?

Welcome!

Sounds like myoclonic seizure activity as a result of possibly being hyperthyroid, not hypo.

Posting some links for you and some lab suggestions. Also, have you had an ultra-sound of your thyroid?

TSH is not always a good test because of binding, blocking and stimulating antibodies to the receptor sites.

It is not unusual for a hypo patient to flip over to Graves'/Hyperthyroid.


----------



## Swimmer (Sep 12, 2013)

It could simply be the mix used to synthetically create tirosint.

I don't see why he doesn't reset everything by putting you right back where you were, back on Ativan and synthroid.

Then -- after getting hopefully balanced out, then very slowly, gently taper off things - one at a time while transitioning to a non-synthetic thyroid hormone and very gently off the Ativan??


----------



## irenakt (Mar 8, 2014)

I will never take the Ativan again. I had a horrible experience just being on it and the neuro told me never to take it again. So that's not an option.

Yes I have had my thyroid sonogramed and it's normal. He did a whole panel of tests I just didn't post them. I don't have my most recent full results in the mail yet I just know TSH was 2.4. But here are results from a month ago and in December:

1 month ago: 1.580 TSH (Ref range 0.45-4.5), Free Thyroxine 2.9 (1.2-4.9), T4 10.5 (4.5-12.0), and T3 Uptake 28 (24-39)
Dec. 2.560 TSH, Free Thyroxine 2.8, T4 11.3, and T3 Uptake 25

I don't think it's seizures. I specifically asked the neuro about that and he said no it's just hynic jerking. It only ever happens when I am lying there trying to fall asleep at night or if I try to nap. Otherwise the only thing I feel during the day is muscle twitching but only if I am at rest and watching television. Otherwise I get nothing all day.

He didn't want me to go back on Synthroid because I just never felt right on Synthroid. Bad sleep and was getting like facial flushing and intense intolerance to heat. Ever since I had my kids. Before that I was okay on it just not the best sleep.

I am going for a physical with a new general doc soon so I will ask about other levels of things. He tested some other stuff but all my tests have always come back normal.

I am just trying to figure out if this is simply due to Ativan withdrawal (7 months later still) or if it is from the Tirosint. It doesn't make sense that the symptoms would ease up and then get worse again if it was the Tirosint, but maybe I am wrong. I am afraid to start another new thyroid med. I know there are fillers is Levoxyl so how is that better than Tirosint?


----------



## LorelaiS (Mar 20, 2014)

I had been taking a drug similar to Ativan for years and the hypnic jerks are definitely a symptom of withdrawal, sadly it can take quite a long time for them to go away but as you are already seeing they do get better. Unfortunately that's the only part of your particular equation that I'm qualified to weigh in on.


----------

