Thyroid Disorders Community
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Avatar universal

Levothyroxin Issues Anxiety like symptoms

Hi all, I love this place BTW...
I have Hashis/Hypo, as well as a partial thyroidectomy about 4 month ago. My problem is my numbers are good now,(TSH .42, FT4 1.5, FT3 327) and I still feel terrible. I am having what feels like major adrenaline especially while sleeping. My sleep is so bad, it is seriously killing me. My head is always like numb and I can't think straight. I wake up with these rushes or toxic like feelings and can't go back to sleep. Sometimes I am also short of breath, but my heart rate is not high. 126/80  66HR.

Does anyone have similar experiences? What can I do? I need some help. Could this be the meds, or what should I be looking into? One doctor said it could be adrenal issues. I had a saliva test 8 months ago that did show low cortisol levels all throughout the day, as well as a 4.4 cortisol to DHEA ratio

Look forward to hearing from you
24 Responses
745975 tn?1258964522
YESSSS absolutely. I am having the worst insomnia imaginable. I get tired, like I really want to sleep, but my heart is just not letting me relax. (not that my heart rate is high, it just feels strong and irregular). I just feel too tense. And then all day I feel like I have energy, but am unable to use it. And that comes along with the "hangover" feeling that I have all day long. Also a feeling of having had too much coffee and a sleeping pill at the same time.

I have Hashi as well and been on .075 of synthroid for about a year now with some minor dose changes. I also think then when i DO sleep i have really poor sleep quality. I feel like my throat is closing in a little. I'm not sure if it is the pressure of the thyroid or what but i don't snore so i dont' think the soft palate is causing an obstruction.

I will be going to get a sleep study soon to determine if there is an apnea and what my oxygen saturation is, since i've read that quite a few people with Hashi suffer from some kind of apnea.

I had an AM cortisol test which i had taken once at 6 AM. It came out in range but on the high side and i was kind of expecting it to be low because i've lost a bunch of weight and am not totally underweight for my height and all my symptoms are of low cortisol.... But i kind of wonder if that is because I am used to going to sleep at 3 or 4 am (due to not being able to fall asleep) and waking up late, versus going to sleep at normal times???

Anyways i think there are SEVERAL people with thyroid problems that have sleep issues as well!  I am literally desperate for answers and solutions. I tried ambian but it made me hallucinate and vomit so i discontinued using it. I am going to finally try lunesta tonight. I just got a new TSH and free T4 test today and the results come in tomorrow.... maybe this is a side effect of the levo and or the dose. I will let you know how that comes back.
745975 tn?1258964522
opps that should say "am NOW totally under weight".

Also wanted to add, that I have been having panic attacks on occasion and hot flashes that i've never used to have before. The anxiety is definitely there but I just don't know which came first, the anxiety that led to not being able to sleep, or the not sleeping that has caused the anxiety! I just know the thyroid is the cause!

*last time i had my thyroid tested, results were in range
Avatar universal
Thanks for the info. We have to figure out what is going on here. This sleep thing is  not cool. I would rather be lethargic and never get out of bed than have this.

I was also tested for sleep apnea and found that, or told that I did not have it. I actually begged my doctor to get me one, and he did because my aunt works for him :) I had major issues last night being constantly woken up and feeling just terrible. I decided to try the Apap Auto sensing Cpap because it felt like I was forgetting to breath, it didn't work though?

I wonder if I could be allergic or something to the synthetic version? Today I am supposed to be receiving my Metagenics Adreset for Adrenal support. We'll see what happens. Lets stay on this.

745975 tn?1258964522
but how do you FEEL at night? is it an issue with not being able to fall asleep,or is it just waking up canstantly?  Does it feel like your thyroid is pressing on your throat and that it's closing up?  I'm pretty much determined to figure out what it going on i'm fairly miserable and it's totally effecting my quality of life. I think this problem has been going on for a really long time but when i was working 14 hour days a couple of years ago i just thought i was tired from working... now i'm not working and i realize how how bad my problem is.

I know the body is super sensitive to the thyroid hormones, so maybe we're just getting too much even if the results are in range???  

Another possibility is to have hyperthyroidism co-exist with hypo. I know there are a few people on here who have both graves and hashi. I'm now beginning to consider that as a possibility as well. I'm kind of bummed by it all.

Is there any thing else at all that could be part of the bigger picture????

Personally for me all i can think of is the following:

- I have a positive ANA of 1:320 speckled pattern but not testing positive for lupus or any other rheumatological disease...
- Low white and red blood cell count
- Hematuria
- My brother has celiac although I don't seem to have the anti-bodies, but he was serum negative also.

And other then having constantly fluctuating thyroid levels, i just don't feel well at all....

745975 tn?1258964522
another though from my Dr.

When i brought this up with the family Dr. (not the internist that treats my thryoid disease), he suggested cutting down the synthroid dose and adding a little bit of cytomel. his rational was that T3 is used up right away, but that T4 stores it self and that could be part of the problem....in addition it would cover any potential T4-T3 conversion problems that i might be having.
Avatar universal
I am baffled too, this is no fun...at all. The only thing I can think of is possible Lymes? This is a whole another beast for diagnosis. There are tons of False positives and that sort of thing, so they mainly go by symptoms. I know that a few years ago I did get a bite on my leg that was a circle, took a pic of it too, but didn't think much of it at the time?

Funny you mention the T3 conversion stuff. The doctor this week gave me a RX for Cytomel. He also said that if I have adrenal problems, this will rev them up even more. I am holiding off until I try the Adreset for my adrenals.

As far as the sleep goes. I usually can fall asleep and then wake up feeling really bad. If I had a decent day and decided to try exercising again for whatever reason, that is usually when I am the worst. Cant fall asleep, get these drop like feelings as I drift off. Very scary actually and frustrating. I might as well be tortured to death. It takes me days to recover and feel better.

Could we be deficient in a certain vitamin or mineral. Maybe an absorbsion issue in the gut? Not sure we will keep plugging away.
Avatar universal
I experience something that is quite odd as well.  Right as im about to fall asleep, i get this weird feeling that jolts me back awake.  It continues for an hour or two before i finally pass out.  It's the strangest thing.  Almost like a "brain zap"
745975 tn?1258964522
well i used to get the extreme morning fatigue and almost a disorientation for my first 9 months or so on synthroid, coming out of being hypo i think is REALLY tough on the body and the body take a great deal of getting used to those synthetic hormones. I'm going to pop back on here tomorrow after i drive to the lab and get my most recent thyroid results, that will tell me if i am in range or not which could help explain my insomnia as of the last 6 months or so if i'm hyper in my ranges.

I looked at lyme a long time ago but, it just didn;t fit right with my symptoms. I dont have chronic joint pain, only pain in my wrists that come and go and in the neck as well, and also a ache in the shin bones (though definitely not shin splints), but those come and go as well. I'm not sure when or which I would have been bitten by a tick. I lived in New Mexico but in the city and i dont think there lyme is there.... And then i went to Collage at University of Michigan, again, dont think i got bitten there. And then lived in Chicago for 4 years and now I'm in Puerto Rico. But I also lived for 2 years in Australia, and have traveled to Eqypt, Thailand, Belize, Costa Rica, all over the caribbean... I mean certainly it is not out of the question that I got something during any of my travels..... just dont know what and how it would have effected the thyroid. I think mine is genetic given that my older brother has Hashis also and Celiac.

You mentioned that you remember this beginning for you after having a major car accident. Mine began slowly not long after having major spinal surgery....... but i'm really not sure it could be a link.

I''m going to look into it further and will post back tomorrow after i get my lab results. Have you ever has any other tests done (aside from sleep tests).... i mean tests checking for other autoimmune conditions????
745975 tn?1258964522
just got my new thyroid results back and the TSH is 1.088 (.03-3.0) and the FT4 is 1.39 (.71-1.85)

So.... I'm perfectly in range for where I should be!

I had my ANA repeated and it has actually gone down! it's now at 1:160 speckled.

I'm not sure why I am still having insomnia, I do believe it is related to an autoimmune condition, but i'm just not sure why or how. I still think I need a sleep study to find out why i feel pressure on my neck/ choking sensation and maybe a new thyroid ultrasound!

I tried lunesta last night and it worked really well for me but i slept from 11:30 PM until 1:00 pm today! so.... suffice it to say i got *enough* sleep, but did I get too much?
Avatar universal
Did they do a FT3? You TSH is in range, but have heard people having symptoms there.
I am not too familar with the ANA, could you explain?

I would definitely get another ultrasound. I wonder if your thyroid is swollen and thus giving you the pain? I think it would be smart to stay on top of any nodules or things going on there.

You definitely got your sleep, thats for sure. I have never tried a lunesta, but I know when I take things to help me sleep, when I wake up I feel worse. This sux
745975 tn?1258964522
ANA = Anti-Nuclear Antibodies, they are antibodies that react with /attack cells nuclei. Basically they are non-diagnostic, they are just an indicator that you have an auto-immune disease. For example, 95% of people with Lupus have a positive ANA, but it is also seen in Addisons, Sjogrens, Rheumatoid Arthritis etc.

Good call with getting another ultrasound.... I will ask for another one next time I see the Dr. I didn't have any nodules before, but might have them now....
458072 tn?1291418786
YES!! I have had adrenaline rushes all night long. about every 2 hours. It is absolutely maddening.   Sleeping pills are totally useless.                      
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