Hyperthyroidism? severe insomnia

[Mary]

I've been wrestling with new severe insomnia for a few months now, sometimes getting only 2 hours sleep. I won't tell you everything I've tried. It finally occurred to me that I might be hyperthyroid because nothing would touch the insomnia, not even unisom. Also my body temp is up by about 1.5 degrees. It used to be 96 or so in the am. and now is 97.6 or so. And I've lost a little weight without trying and my BP is up -

I've been hypothyroid for over 20 years, most recently taking NP thyroid, 90 mg a day. I stopped my thyroid med about 12 days ago and don't have hypothyroid symptoms - I've never gone that long without it before.

I moved 6 months ago to Texas from California and my California doc is on maternity leave. I've found a DO here I like, and asked him about testing my thyroid and he said to wait about 4 weeks before testing. In the meanwhile, the insomnia is killer. He gave me a prescription for liquid doxepin for sleep that I can take in a very low dose (3 or 5 mg) which I haven't tried yet. I had a very bad reaction to an AD like this years ago, so don't want to take it but am desperate enough to try it.

Also, I'm wondering if the insomnia problem is hyperthyroidism, if doxepin would be effective for that, though one way to find out I guess.

Last week I used an herbal product called Thyroid Calming and Bugleweed by Herb Pharm, which did help me sleep - unfortunately after about 4 days it began to lose its efficacy. I switched to California poppy tincture which helped some, and then Kava kava extract. It's crazy.

Any suggestions for calming down my thyroid?

I am going to try l-carnitine which is supposed to inhibit T3 and T4 entry into the cell nuclei. I had some acetyl-l-carnitine and took that in a high dose and the insomnia, already bad, got even worse, so am going to try plain l-carnitine - this is getting expensive!

fwiw, my thyroid numbers from last July are

TSH - 0.89 (0.40 - 4.50)
T4 free - 1.0 (0.8 - 1.8)
T3 free - 2.5 (2.3 - 4.2)
T3 reverse - 14 (8 - 25)

@pattismith , you've written a lot about thyroid so am tagging you here, also @Learner1 for any help you might have, thanks! Right now I just want to sleep!

 

[pattismith]

Hello @Mary , I'm not sure why you think your insomnia has something to do with your thyroid.

Do you have tachycardia?

 

[Mary]

Hello @Mary , I'm not sure why you think your insomnia has something to do with your thyroid.

Do you have tachycardia?

No, I don't have tachycardia. But I thought of thyroid because (1) the insomnia is so severe, different than anything I've dealt with before; (2) my hair has been falling out (3) I've lost a few pounds without trying (4) I've gotten extra hot, especially night; (5) my body temp has gone up about 1.5 degrees from what it used to be (6) when I get this severe insomnia, my BP goes up by 20 points at least, but no tachycardia

Also, I stopped my thyroid med I've been on for over 20 years about 12 days ago now, with no symptoms of hypothyroid, and the herb combo Thyroid Calm by Herb Pharm, together with extra bugleweed, supposed to calm down thyroid, and this helped me sleep for about 4 nights until it started to lose its effectiveness

I can't think of anything else that would account for all of this.

 

[Mary]

@pattismith , also, none of my usual stuff touches this insomnia. Unisom used to work well when I didn't take it very often but it does nothing for me now. Delta 8 CBD isn't doing anything, I haven't found anything to touch this insomnia, except for the bugleweed herb combo. Also, taking a lot of kava kava helps some, and California poppy tincture helped some, but again I had to take a lot of it. And these all lose their effectiveness for me after a couple of days

 

[L'engle]

@Mary my hair starts to fall out when thyroid things happen.

Maybe it will just take a while for the thyroid medication to wear down in your system?

I remember your huge list of sleep supplements, it makes a great reference for others. It seems there are endless ways for sleep to go wrong!

 

[Mary]

Maybe it will just take a while for the thyroid medication to wear down in your system?

That would be good I think, if that's the problem - it's so hard not knowing what's going on, and being constantly so sleep-deprived!

It seems there are endless ways for sleep to go wrong!

Absolutely! We need real sleep research. The doctors are pretty much useless when it comes to sleep unfortunately!

 

[helen1]

@Mary
I had a similar experience a year ago, during a very stressful time, when I went from years of hypothyroid (taking T3 & T4 kept me good for thyroid at least) into hyperthyroid with exactly the same symptoms as you. The strangest part was being so hungry, eating a lot and losing weight. The worst part was i thought I’d had a heart attack (but tests showed all was fine there). Also the insomnia!

I stopped the T3/4 as soon as I thought i might be hyperthyroid, took carnitine and melissa herb and symptoms abated in a few weeks. Then went hypothyroid again. I’m back on T3/4.

Did your symptoms begin around any unusual event? I’ve since learned that switching from hypo to hyper can happen for no perceivable reason but it can also happen like it did for me.

 

[Mary]

Hi @helen1 - well, actually, it coincided somewhat with my move to Texas. I'd been a Californian most of my life so it was a big deal, even though overall it was a good thing for me for various reasons. I have wondered if that was a factor!

Do you recall how much carnitine you took? I bought some l-carnitine today, after 2 days of large dose acetyl-l-carnitine made the insomnia worse (if that were possible!) So I took 1 gram l-carnitine today but plan to increase it to 2 or 3 tomorrow.

I'm really glad to hear your symptoms abated in a few weeks! Thanks for the info

 

[hapl808]

Hello @Mary , I'm not sure why you think your insomnia has something to do with your thyroid.

Do you have tachycardia?

I've wondered about thyroid, although my blood tests have been normal. But they've only included a few markers like TSH and free, not reverse (last time I did it they ran out of blood to test and I react horribly to blood tests so it's hard to do).

I have constant tachycardia. Sitting at my desk at the moment relaxing and HR is 105. My body temperature is usually around 97.5f. I don't take any thyroid supplements. Not too insomniac these days, although I used to be. I still get insomnia but it's usually from acid reflux (which only happens after mental or physical exertion). My bodyweight is low-normal, but I can put on weight if I want (but since I can't exercise, it wouldn't be muscle anymore).

Curious if there were any things I could do empirically to test thyroid. The tachycardia is frustrating and probably has something to do with the constant fatigue. I use iodized salt (but relatively small amounts) and eat some dairy that likely has some iodine.

 

[Gingergrrl]

I've found a DO here I like, and asked him about testing my thyroid and he said to wait about 4 weeks before testing

Why did he want you to wait 4 weeks before doing the thyroid tests?

well, actually, it coincided somewhat with my move to Texas. I'd been a Californian most of my life so it was a big deal, even though overall it was a good thing for me for various reasons. I have wondered if that was a factor!

You could always move back here ... just kidding... sort of

 

[Marylib]

Sometimes it boils down to stress and/or some infection you can't identify. The insomnia is miserable and impossible. I hope you find something to help soon. I have ramped up my melatonin. I still feel the same, but it's a relief to conk out longer than usual, with fewer meds. It doesn't seem to bother me like it does some people. Maybe because I am getting so old!

 

[Viala]

@Mary Have you tried elimination diet? Some foods may cause insomnia, usually the biggest allergens like gluten and casein, soy, corn.

 

[Mary]

Why did he want you to wait 4 weeks before doing the thyroid tests?

He said that because I'd only been off the med for 10 days or so any change in my thyroid labs wouldn't show up in my blood for another 4 weeks or so -

You could always move back here ... just kidding... sort of

 

[Mary]

Sometimes it boils down to stress and/or some infection you can't identify. The insomnia is miserable and impossible. I hope you find something to help soon. I have ramped up my melatonin. I still feel the same, but it's a relief to conk out longer than usual, with fewer meds. It doesn't seem to bother me like it does some people. Maybe because I am getting so old!

How much melatonin are you taking now? And what form - sublingual, tablets, etc? heapsreel has been writing about taking quite high doses and I'm considering doing the same.

 

[Mary]

@Mary Have you tried elimination diet? Some foods may cause insomnia, usually the biggest allergens like gluten and casein, soy, corn.

I haven't but I eat very little gluten, no soy, a little dairy and corn. I am however extremely sensitive to msg and all its derivatives which are generally found in processed foods. If I eat any of that with dinner, no sleep in sight so I religiously avoid any processed foods at dinner, and most of the time otherwise.

 

[helen1]

Hi @helen1 - well, actually, it coincided somewhat with my move to Texas. I'd been a Californian most of my life so it was a big deal, even though overall it was a good thing for me for various reasons. I have wondered if that was a factor!

Do you recall how much carnitine you took? I bought some l-carnitine today, after 2 days of large dose acetyl-l-carnitine made the insomnia worse (if that were possible!) So I took 1 gram l-carnitine today but plan to increase it to 2 or 3 tomorrow.

I'm really glad to hear your symptoms abated in a few weeks! Thanks for the info

@Mary The caps I have are 855 mg and I took less than a cap at a time, likely 500mg. I’d watch your symptoms carefully as when I got tested again my TSH was back up to 4.5. So things can reverse pretty quickly.

 

[Marylib]

How much melatonin are you taking now? And what form - sublingual, tablets, etc? heapsreel has been writing about taking quite high doses and I'm considering doing the same.

I'm up to about 20 mg. It took me ages to get a supply. So for sleep at the moment, it's a sliver of a trazodone (maybe 20 mg?) and usually one doxylamine succinate (Kirkland Sleep Aid) Sometimes I use two cetirizine instead of the doxylamine succinate. Formerly I was taking 15- 30 mg mirtazapine plus the antihistamines (I don't like mirtazapine). At the moment, I am just dumping the 3mg capsule contents in my mouth and swallowing it. These are capsules I had left over while waiting for bulk supply of 100 grams. I tend to ramp up slowly with anything I take to see what I notice. What I notice is better longer sleep and even some dreams. It is probably still shitty non-restorative sleep but at least I am unconscious. Who knows? I've never used those sleep apps,

 

[Learner1]

He said that because I'd only been off the med for 10 days or so any change in my thyroid labs wouldn't show up in my blood for another 4 weeks or so -

I believe the half life of T4 (levothyroxine) is about a week and the half life of T3 is less than a day. I think testing FT3, FT4, rT3, selenium and iodine might be helpful. I'd also look into cortisol production by doing a 4 point cortisol or DUTCH test. And get iron and B12 checked. Then you can start to figure out what's going on.

I've taken up to 30mg melatonin without I'll effects.

 

[Mary]

Thanks @Marylib - half of a unisom (doxylamine succinate) used to knock me out from 1:00 on and i'd wake up non-hungover, I loved it but developed a tolerance fairly quickly so had to mix it up. Only it doesn't touch my current insomnia. I tried trazodone several years ago, a couple of times, and each time hated it, it made me tired even at very small doses and yucky feeling, so gave up on it. I have done doxepin 2 or 3 times now and it is helping some - 3 to 5 mg (liquid). Last night it put me to sleep for 3-1/2 hours (after going on 2 (max) hours sleep 2 nights in a row, and then I was awake at 3:00 a.m. And am grateful I thought of NAC which is supposed to help normalize glutamate levels, and something, I'm guessing the NAC, helped put me back to sleep! It was heaven, I think I got 6 or 6-1/2 hours altogether.

It is probably still shitty non-restorative sleep but at least I am unconscious.

Yes, being unconscious is good enough for me too if I'm lucky enough to achieve it!

 

[Mary]

I believe the half life of T4 (levothyroxine) is about a week and the half life of T3 is less than a day. I think testing FT3, FT4, rT3, selenium and iodine might be helpful. I'd also look into cortisol production by doing a 4 point cortisol or DUTCH test. And get iron and B12 checked. Then you can start to figure out what's going on.

I've taken up to 30mg melatonin without I'll effects.

@Learner1 - Thanks for the testing recommendations! I'll look into it.

I don't think the problem is high cortisol - I've had high middle of the night cortisol insomnia before, where I'd wake at 1:00 or 2:00 (after sleeping for 3 or 4 hours) and be unable to go back to sleep for a few/several hours. Seriphos was very effective in normalizing my cortisol - it worked very quickly, but Seriphos does not touch my current insomnia, where I'm unable to go to sleep at all, or only for an hour or 2 at the most, most often in the early a.m.

I had neurotransmitter testing done a few months ago which showed high glutamate, DOPAC and phenethylamine, and high glycine and taurine, both of which I was taking at night for sleep, though I've since stopped the taurine as I think taken at night it was contributing to my insomnia, though it helped at one time.

I read something yesterday about methionine possibly helping with sleep and it was one recommendation my doctor made after the neurotransmitter testing. I didn't look into it then but finally did yesterday and read a review written by a woman who said both she and her husband had very high stress jobs, their sleep was shot, and then they started taking methionine and are sleeping again, so am adding that to my stack too! And as I wrote above I took 500 mg NAC at 3:00 a.m. last night and was able to go back to sleep (after taking doxepin before bed) - so I'll try the NAC again middle of the night - it's exhausting trying to get some sleep!