Help insomnia mystery not on any thyroid meds for a while

[Shedding01]

Hello, so I’m in insomnia hell going past three months now and I did go to a endocrinologist who did not give me the time to explain the details of why I felt levoxyl gave me insomnia.  I feel like it messed with hormones involved in sleeping.

I was a big dum dum and was  inconsistent with my little 25 mcg dose of levoxyl that worked  beautifully for  nine months until I screwed it up by drinking Gatorade before taking my does a few days, missing two doses, taking a pain pill one morning.  

Literally  after getting bloodwork I saw that my TSH had  gone up  and then I had way too much  calcium and my body.

I have a no insurance took the blood work from the sliding scale facility with my subclinical 4.45 TSH to my doctors office.

( hair started falling out in chunks again for the second time five days later and already had dry skin and scalp)

I should’ve just stayed on the 25 mcg of levoxyl  and ask my Doctor Who wanted to change me 50 mcg  if I could just do it  twice a week and 25 mcg  for the rest of the week to get my body used to it since I am sensitive to medications and  put on low doses when I’m giving medication.

She said no 50mcg  is not a high dose and presumed my body had just gotten used to the 25.

I had an adverse reaction of having low blood pressure and high heart rate and called the doctors office and left a message for the nurse hoping to get resolution without having to go to the office which I have done so many times in the past and should’ve done this time but was trying to save some money but the nurse did not return my calls and I continued on a higher dose until I finally went in a week and a half later.

I  switched back to the 25  after being on the 50 for 13 days but I wasn’t balancing out and the low by pressure and high heart rate continued for a month and a half.

My hair did finally stop falling out in chunks and dry skin got better but I had to discontinue therapy and did so for two days.

All vitals returned back to normal thankfully after those two days.

I didn’t wanna lose my time invested and my doctor had prescribed 25 Mcg  of Synthroid as an alternative so I started taking that which made me very sleepy and stupidly read post online about people switching and having issues.   Instead of just seeing  how my body reacted and psyching myself out.

I’ve personally should not be reading online post because it caused me to become anxious and after day nine of the Synthroid I took and a a levoxyl  25 mcg day 10in the morning and went back to sleep and woke shortly to to having a higher heart rate.

The next day I went back to Synthroid 25 Mcg  an experienced what I call Yucky  euphoria.

I was lightheaded and felt a slight high but very nauseous and had to sleep most of the day.

The next day I discontinued Synthroid and still had the foggy nauseous euphoria which lasted for another four days.

I then gave myself a day to feel better and resumed once again they levoxyl 25 mcg.

I did great on it and was very excited, on day nine for some reason my door was open oddly for some reason and  I thought I had not taken my morning dose which shouldn’t of have mattered after all the previous experience I’ve had with taking too high of a dose but I stupidly took a second dose one at 8 AM and one at 11 AM and felt nauseated and knew I had taken a second dose.

The one time I didn’t call a pharmacist to know that you should skip your dose the next day when you double dose, I stupidly took my dose the next day and was fine.

I was getting excited I finally I got this wonderful drug  back into me but unfortunately Day 11 after taking my morning dose  I went back to sleep just for three hours and my brain literally woke me up and I was unable to go back to sleep.

( yes I have a very weird sleep schedule)

I have never had any issues falling asleep, one of those people who could just lay down and fall asleep, I always would sleep very deeply and have very vivid dreams but now that’s just and memory now sadly.

That night I woke up several times which was abnormal but didn’t think anything of it.

The next day I took my morning dose at 8 a.m. and went back to sleep and woke up the next hour and was not able to go back to sleep anymore and it got even worse.

It’s like your whole body sleeping but your brain not shutting down to recharge I’m just staying awake and waking you up, crappy insomnia.

I  discontinued the levoxyl  I didn’t replace it for 62 days, unfortunately I still have insomnia.  

I was told to try Synthroid again and had the same symptoms of sleepiness which helped me get some sleep thankfully but after day 15 both my heart rate and blood pressure  increase and the heart rate was ridiculously aggressive and after 18 days of being on Synthroid and three days of a aggressive heartbeat and faster heartbeat I had to discontinue it.

I feel the fact that I went back-and-forth on two different thyroid medications that somehow it caused  hormones associated with sleep to mess up in my body and cause me not to be able to stay asleep Or fall asleep.

I’ve tried every sleeping aid and tried two different sleeping pills and nothing works.

I am now on another anxiety med that I am not liking & trying to push through to see if it’ll help me sleep but honestly I don’t believe it’s anxiety that is keeping me up.

I finally threw in the towel and went to a Endocrinologist with all my labs  and she had a protocol and took my labs I was only able to spit out my experience of when the insomnia actually occurred not the going back-and-forth between the two thyroid meds and she said just like all the other doctor said  yeah they referred me to an Endocrinologist  that insomnia was not from my experience with the lovexyl.

Yes I’ve had anxiety all my life but it’s actually always made me sleepy due to exhaustion and my body needing to re-charge and that’s what everyone is saying.

I hadn’t taken any thyroid medication for six weeks and again experiencing dry skin dry scalp hair shedding, but at least it’s not falling out in chunks!    

These were my recent labs and seems like my TSH keeps going down was at 1.20 with the TSH of 4.4.  Oddly enough after four weeks  it went down my t4 1.11 and now 1.0.  With a lower TSH 3.9. TSH has gone down and T4 as well so that does not make sense for the thyroid loop??

Labs after 6  weeks off of Synthroid which I was only on for 18 days and prior to that I was off of thyroid medication for 61 days.

Free t4  1.0 ng/dL1. (Normal is 0.8-1.8 ng/dL)

T3 total (Normal is 0.8-1.8 ng/dL)
(Normal is 76-181 ng/dL)

TSH.  3.91 mIU/L3.  
Range up to 4.5

Thyroid Peroxidase Ab (TPO)
<1 IU/mL4
(Normal is <9 IU/mL)

So if anyone knows if going back-and-forth between thyroid medications can mess with other hormones in your body that affect your sleep please let me know, I am so tired.

Also I didn’t have a chance to ask the nurse at the doctors office if my TPO  levels mean that I do not have the auto-immune thyroid disease which I believe it means I do not but I want to know for sure.

But of course mainly the insomnia factor, I’ve not spacing out medications properly or the mix one day that I did or if any of this can cause permanent insomnia due to affecting other hormones that affect sleep.

Thank you regardless!

[Red_Star]

High doses of vitamin D can increase the concentration of calcium or oxalate in urine so I've read. Magnesium is primarily found within the cells. 1% of magnesium is found in the blood. The best way to know if you need more magnesium is to try it and see if you note any improvement in any of your symptoms.

I have Hashimoto's thyroiditis. I also have Graves antibodies show up sometimes. Hyperthyroidism is more damaging than hypothyroidism but both are not healthy. Hypothyroidism can also cause insomnia in some people.

Stopping and starting thyroid medication and changing doses will not mess up other hormones permanently IMO. At the moment I have to stop and start thyroxine all the time as I keep having hyper flare ups due to toxic mould exposure.

[Shedding01]

I wish you can get away from the toxic mold exposure.   I know you have to test for magnesium through cellular level as I read it  online after you mentioned it but I can only get a tested by bloodwork and I’m waiting for the results.   I’m so sorry you’re in hyper hell with the insomnia and other stuff that comes along with it.    I know everyone thinks I’m bananas because the reason why I think I got the insomnia but my body experiences adverse reactions from medication if I discontinue medication and than take it again.   Or I just get rare side effects or adverse reactions.  It’s annoying  to do so well on a medication, no longer need to take it, then have to take it again, then instead of relaxing you it makes you hyper for example.   Or are you going to side effect I’ve not peeing in the morning and paying less throughout the day and they tell you that’s a side effect of someone who is 60 or older when you barely 30.   Just some examples.

My body is sensitive in general and it’s making me feel broken because I’m at a loss.  I told the nurse at the endocrinologist office finally one that was willing to listen to me to send a message to the doctor explaining my inconsistencies of the dose to see if there’s anything else that can tested for and questioning why she was just testing the same things three months later ( Basic thyroid testing ) and she still hasn’t called me back or called back in regards to my first visit after they asked me if I was having symptoms which I already gone over with so have to follow up on that fun times.  But at least I was able to speak to a nurse and she did dictate that I am out of the norm patient when it comes to meds.

I’m afraid of taking the magnesium because of what the vitamin D did to me it basically ruined me doing so well on  thyroid medication and led me to several months of hell which I still count that I’m experiencing a crappy time due to the insomnia which is driving me crazy, it’s bad.

I hope the magnesium helps you get some sleep I’m sorry you have to deal with all that you have to do with.

sorry for late response, my apologies, thank you again  for thinking out of the box help me find a solution.

:)

[Red_Star]

Toxic mould grrr. Well at the moment not on thyroxine. It's 1:23 in the morning lol. I had a look online about hypersensitive reactions and found this...

Endocrine Society's 96th Annual Meeting and Expo, June 21–24, 2014 - Chicago

SAT-0484:
Management of Hypersensitivity Reactions of Levothyroxine

Xiaolan Lian1
1Peking Union Medical College hospital, CAMS and PUMC, Beijing, China

Presentation Number: SAT-0484
Date of Presentation: June 21, 2014

Abstract:
Hypothyroidism is very common, about one in 300 American person. Most patients with hypothyroidism will require lifelong thyroid hormone replacement. Levothyroxine ( L-T4) is as therapy for the treatment of hypothyroidism. Hypersensitivity reactions to L-T4 are rare. However, it must be faced problems how to deal with hypersensitivity reactions to L-T4 because of the lack of alternative medicine. This report presents three cases with L-T4 hypersensitivity reaction and review the solution of hypersensitivity reactions of L-T4.

Case 1, a 33-year-old woman presented because of subclinical hypothyroidism and Hashimoto’s thyroiditis. She was prescribed 25μg L-T4 (Letrox, BERLIN_CHEMIE, Germany). Approximately 24 hours after the first dose she had generalized urticarial, facial angioedema. These symptoms were aggressive when she continued to take the medication. She did not take the drug after three days. The pattern gradually disappeared after 7 days. After one month, she was prescribed another L-T4( Euthyrox, Meck-Serono,Germany),6.25μg qd for two weeks without any symptoms. Then the dose of L-T4 was gradually increased to 50μg qd during three months. She denied the recurrence of symptoms.

Case 2, a 38-year-old woman refereed to our clinic with subclinical hypothyroidism. She was prescribed Letrox 37.5μg qd. She had abdominal pain and diarrhea about one hour after the first dose. The same symptoms had appeared when she took the drug for three consecutive days. These symptoms disappeared when she withdrawn the medication. After one month, she was prescribed another L-T4( Euthyrox, Meck-Serono,Germany), 6.25μg qd for two weeks without any symptoms. Then the dose of L-T4 was gradually increased to 50μg qd.

Case 3, a 32-year-old woman presented because of hypothyroidism. She prescribed Euthyrox,25μg,qd. She had fever on that day of taking the medication. The same symptoms had appeared when she took the drug again. The fever disappeared when she did not take the medication. Then she was prescribed desiccated thyroid,20mg qd. She denied the recurrence of symptoms.

Besides these, hypersensitivity reactions of L-T4 have liver damage, epilepsy, asthma in published articles. Management of hypersensitivity reaction of L-T4 may replace L-T4 from different manufacturers or desiccated thyroid at first. If it fails, desensitization to L-T4 will be processed.

Nothing to Disclose: XL"

[Red_Star]

I have insomnia with hyperthyroidism and magnesium deficiency. A cause of low magnesium is high calcium. Since you mentioned high calcium and insomnia, it's worth giving magnesium a try. Look for magnesium with "ate" such a citrate, glycinate etc.

You only mention synthetic thyroid medication. Have your tried natural desiccated thyroid extract? You might do better in this medication.

Your TPOAb is negative. This doesn't rule out Hashimoto's thyroiditis however. Also request thyroglobulin antibodies (TgAb). In a small % of people both antibodies are negative so other test are needed to confirm diagnosis - ultrasound/FNA biopsy.

[Shedding01]

That was a great point you made about magnesium  deficiency causing insomnia.  I’m sorry knowing how it feels that you have to deal with it as well.    I went back to my bloodwork and actually saw that my calcium in my blood was normal on two different occasions as well as my potassium not low or high.   Yet I had  calcium crystals in my urine and interesting enough was taking extra vitamin D3 and a prenatal vitamin which in the prenatal vitamin contains magnesium which I was told to discontinue.  I discontinued it and got checked and no longer had the calcium crystals in my urine but I also did not resume the vitamins until recently.  Just tohe prenatal  ones.   Being on the prenatals for over a year and suddenly stopping it  and all vitamin supplements for a prolonged period of time could cause something.    Unfortunately  I have not been eating healthy so you never know but I don’t have any symptoms I low magnesium except for the insomnia, maybe I can get one of the nurses at the endocrinologist office to assist.  Thank you for the response and the TPO answer.  I am now mentally and physically tired of dealing with this LOL :) :(

But honestly going back-and-forth not spacing out two different thyroid meds, and mixing one pill while taking nine days of another.  And finally taking the original one a few days later thinking I was doing well and that’s when the insomnia hit and the next day just got worse makes me still believe some hormone in my body in relation to my sleep is deficient due to me being  hey dumb dumb once again and going back-and-forth between the two different thyroid meds in  a short period of time.   I’m actually afraid to tell the endocrinologist  Office what I did Because I feel like it will fall poorly on my primary care physician.   So perhaps me just telling her that I tried this method consistently and then I tried to go back to a lower dose and then I tried another thyroid med consistently and now I’m awaiting to see if I can go back to my old one might’ve been a blessing in disguise because I don’t want to cause any issues for anyone, I wish I knew what Dr. I can go to and not give the name of my primary and say I’m in between primaries  physicians  and see if they can help me with the hormones in relation to sleep.

They’re sleep specialist is here who di sleep studies just for sleep apnea but I don’t know if they go deeply into hormones which is why I believe I was referred to the endocrinologists,  but I guess they don’t deal with issues relating to sleep.    Many other countries  I would be able to get help except sadly for this one at the moment hopefully things will change one day for everyone.

Thank you for your help again as always!

I know your hyper  and my friends in this country who became hyper were told to become hypo because it would healthier and didn’t affect their heart and now are hypo but just have lower TSH goals, is that something  and is done in your country?   Only of course if you wish to share.   if not I completely understand.

Was just curious, got a lot of time on my hands sadly I wish I was in bed snoozing away.  Will wish  the same for you:)