When does sleep get better once you reach a good level of thyroid meds? I can't seem to sleep more than 4 hours. Before I became overmedicated I used to be able to sleep 8 hrs no problem. This week Im down to 100mcgs of levo after a brief experiment of 125mcgs because my tsh was 1.03 (thought I had room to wiggle) But my tachycardia went way up again for a week, sleep even worse after only 5 days on 125mcgs. My heart rate has been a lot better the last few days. Symptoms of inappropriate sinus tachycardia have subsided quite a bit but still arent perfect. I'm waiting to do ft3 ft4 and vitamin levels with iron panel in a private test once I've been on this 100mcgs dose for 6 weeks. Previously was on 112 for 6 weeks but they only tested TSH. And still had sleep issues that whole 6 weeks on 112.
I also used to be able to take naps mid day if I wanted. I can't even take naps now since this whole thing started 4 months ago. I fall asleep okay at night but frequently wake up 2 hrs after or 4 hrs after. And then I can't get back to sleep. I'm taking 6mg of melatonin and 25mg of benadryl. If it gets really bad I'll take a 1.85mg of Mirtazapine but usually that's once a week or once every 2 weeks. But it will knock me out for 8 hrs but make me feel like a zombie for a day after. Also it affects t4 to t3 conversion so I try not to use it unless desperate. I know you guys are probably sick of my questions by now but I'm at my wits end and desperate. Does it take weeks or months to see improvement in sleep once you're on a proper dose? I don't want to get addicted to sleep meds. Have you heard of anyone without a thyroid needing less than 100mcgs of levo? Now I'm starting to think I'm still slightly overmedicated because I lost all that weight. Any insight would be greatly appreciated 🙏 I skydive for a living and havent been able to work the past 4 months. Please help me 🙏
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i was overmedicated once ... Some thing's got better quickly within a few weeks .. some took longer ...i would say you need at least a couple of months consistently on the lower dose before all the effects of overmedication will settle down and go away. .. and possibly longer.
To be honest ... you're not going to like this ... but the first time i remember thinking "actually, for the last few weeks i've been sleeping all night, every night ,regularly ... much better than i have done for years" ... was about 5 or 6 months after i went onto the lower dose.
Goodness, I hope that's not the case. I've cut out all caffeine 4 months ago when this started and still feel "wired" during the day when I wake up at 3 or 4am. If I could nap during the day it wouldn't be so bad. By how many mcgs were you overmedicated if you don't mind me asking?
I was going to ask a similar question ! My gp reduced Levo from 100 mcg to 75 two weeks ago ! I had read somewhere you should see some improvement in 10 days but reading thro the replies here it is a slow process ! My tiredness has improved so hopefully things will gradually improve with other symptoms!
What were the symptoms you were experiencing? Just out of curiosity. And do you have a thyroid still? Thanks 🙏 Just trying to see dosages of people with or without a thyroid.
I was initially diagnosed under active thyroid been on 100 mcg Levo 15 yrs no problems ? Then symptoms started about 6 months ago My symptoms fatigue, hot flashes particularly at night have fan on perm , muscle aches , continually waking thro night so hot ! I would get up 8 am ish by 11 couldn’t keep my eyes open !
Sort of like me. I was on 150mcgs for 20+ years after my radio active iodine with no issues. And I mean none. All of a sudden 4 months ago became severely hyperthyroid where I was in and out of the ER and doctors for a couple of months before they figured out my ft4 was way over range. I lost 16 kilos in a month roughly. And at its worst in the beginning I couldn't sleep not a wink for days. I started hallucinating and peeing every 10 minutes. Heart rate was 160-180 and I was bed ridden for weeks. Hair falling out in clumps etc. Even on 3 weeks of 137mcgs had me bed ridden. That's when I found this forum. Even 125mcgs is too much. Only variable that happened was I was donating blood frequently to the red cross and my ferrtin got low in the 20s. And I had Covid (delta variant) 3 months before all this kicked off. Had a bad time with it and needed monoclonal Antibodies. Also went strictly gluten free but that was 3 or 4 years ago. It's weird how are body changes. If you asked me last year if I could survive on 100mcgs and still have energy, I'd say no 🤣
Its such a slow process to get right you just want to get back to where you where ! I lost about 4 kilo but didn’t relate to thyroid? It was the tiredness and no motivation to do anything that got me thinking this is not right ! But when I looked at all the symptoms for over medicated I could tick most boxes !
From the replies on here I will leave for several weeks then get private bloods done to see if any improvement
Also make sure you are not going through menopause. Not sure how old you are but low estrogen levels cause sleep issues, night sweats, high bp, tachycardia etc. I've also read you need less levothyroxine when your estrogen is lower.
I probably do need some t3 but as of right now and just coming off being overmedicated. I don't want to play with any more variables until I somewhat get in the ballpark of my levo dose and get a private blood test done so I can see what I'm working with.
If you haven't had full labs done, how do you know you were over-medicated? You cannot rely on symptoms alone because they can be the same when under-medicated as over-medicated. And there are so many variables, because symptoms can be caused by other things - nutritional deficiencies, for example, or high/low cortisol. Have you had those tested?
They only did TSH and FT4 the first 3 times but it confirmed my ft4 was way way over range. Even at 137mcgs which was 12mcgs below my regular dose. This last one they only did TSH even when I protested. I didn't get ft3 ever because they wouldnt but when you have lost 16 kilos in 1 month and have a resting heart rate of 160-180 is that not a sign along with extreme hunger no matter how much you eat? Originally when I stopped taking levo for 5 days I got some reprieve and my FT4 then tested in the upper part of the range before starting a lower dose. When it was out of range before. That's another sign. I'm guessing to a point as far as what dose I need now that I'm around 100mcgs to 112 mcgs but labs in the beginning did confirm overmedicated on 150mcgs along with my extreme symptoms. My resting heart rate right now is 65bpm along with 115/75 BP. I went to 125mcgs after 6 weeks on 112mcgs for 4 or 5 days and my heart rate went right back up to tachycardia around 105bpm and blood pressure went up. And took a week to calm back down on 100mcgs.
You're right you can have some overlapping symptoms hyper or Hypo but hypo patients usually don't lose weight that rapidly in 1 month when you're eating every 3 hrs because of extreme hunger.
I'm waiting 3 weeks on 100mcgs before getting the proper test which I will pay for from a private lab. And then I'll do another full panel from a private lab in 3 or 4 weeks after that just to confirm I'm going in the right direction before I can get into an endocrinologist in 2 more months.
My morning saliva cortisol did come back 4x higher than normal for that time of day. I have a 4 point saliva on the way. Trust me, I'm not against full labs but they just didn't do it when they promised me they would do a full thyroid panel after 6 weeks. I changed primary doctors after that. So here I am just trying to get relief tweaking my dose in small 12.5mcgs increments until I can see an endo in 2 months or figure it out myself before then. I'm close besides the sleep issues. But even 4 hrs is better than going 48hrs without sleep like before.
They only did TSH and FT4 the first 2 times but it confirmed my ft4 was way way over range
Having an over-range FT4 is no guarantee that your FT3 is right. You could be a poor converter. And, if your FT3 is low, then you are hypo.
when you have lost 16 kilos in 1 month and have a resting heart rate of 160-180 is that not a sign along with extreme hunger no matter how much you eat?
Possible, but when I'm over-medicated, I just get a tremour in my hands, so I don't know.
My morning saliva cortisol did come back 4x higher than normal for that time of day.
So, what did your GP do about that? He should have got you tested for Cushing's.
Well, I hope that your new tests give you some concrete information about what's going on.
The gp that I got rid of said to wait 2 months for the endo before acting on the cortisol. Dealing with the Healthcare system the last few months has opened my eyes. Doctors make a lot of people sick or keep them sick in their ignorance. If I didn't keep going back saying something is wrong with me. I'd be on beta blockers and antidepressants and would have an anxiety only diagnosis. I thought things had changed in 20+ years.
Originally when I was first diagnosed with Graves it took them 7 months before we changed doctors and they saw my neck was swollen and tested my hormones and antibodies. By that point I went from 93kilos to 61kilos in those 7 months. This time I went from 93 kilos to 76.2 kilos before they figured it out. I kept saying "I feel like how I did when I was diagnosed with graves" still they didn't test tsh or ft4 or ft3. Just said I had anxiety and gave me propranolol and Mirtazapine. I really feel for all the people that are "in range" but still not feeling right but their doctor thinks it's a closed case. Such a mess. And thanks to everyone here who take time out of their day to help people like me. Truly appreciated.
Totally agree, doctors do make people sick, or sicker. I've never seen a doctor that hasn't made me worse, rather than better. And, they just never listen to the patient! They make up their own scenario and alter the facts to fit their theories. They wouldn't last five minutes in any other profession but medicine, where - it seems - anything goes. They make me so angry I avoid them as much as possible. Otherwise, I might end up punching one on the nose! I just cannot abide them!
in case it's of any interest... here's a copy of a reply i made to someone else who asked me about overmedication effects on my bladder. (this was from the first time i was overmedicated when i used to be on 150mcg.. not the time i mentioned in my reply further up this post ....i can't actually remember if sleep was a particular problem this time .. there were so many other thing making me feel awful anyway )"Hi ....... my bladder connection to thyroid seems to be with overmedication (on Levo) After the menopause i became over medicated on the 150mcg dose i had been stable on for over a decade.
The initial symptom i went to the GP about was bladder related. it felt rather like i had cystitis but without the characteristic burning pain on urinating... this had been going on for months , and was worsening .
My bladder was always tense and uncomfortable often painfully so ,and it just generally felt irritated , i was starting to wonder if i had 'Interstitial Cystitis' ... I was needing to urinate very frequently , just small amounts . and the bladder still didn't feel relaxed even after i'd been. i was getting frequent 'urge incontinence, and not managing to get to the bathroom in time. My daily activities became dominated by where the nearest bathroom was.
For several months i had also been dealing with a very painful ? kidney area /back pain. i constantly had a hot water bottle tucked into the back of my trousers at work. The pain was sometimes severe enough that friends (and later the GP) suggested ?kidney stones .
( i also had other more characteristic symptoms of overmedication , but i didn't recognise them as such at the time, and neither did the GP's.. and they didn't initially run a thyroid blood test.. but i was very 'jumpy' my startle reflex was 'through the roof' ,and i was uncharacteristically over anxious, and i was having 3/ 4 bowel movement every morning)
The first GP did a urine test , which showed no UTI, but showed microscopic blood in urine and also Calcium Oxalate crystals. So she suspected kidney stones and sent me for an ultrsound of kidney's / bladder .. which showed nothing abnormal and didn't see any kidney stones.
Then another GP started thinking about looking for a cancer, due to the weight loss i had seen, and the general state of 'feeling bloody awful', so they referred me for for a CT with contrast and an endoscopy and a colonoscopy .
However, the referral had taken longer than expected for a '2 week pathway' ,.... so i had contacted the GP's again to check up on the referral due to how very unwell i felt .. and this time i saw an older female GP... who actually looked at me and examined me properly (!) ... during this appointment she said .. "has anybody checked your thyroid bloods yet ? .. Mmmm .. no .. well that should have been done first... Hold your hands out in front of you (fine tremor in fingers was then seen ) .. i'll order thyroid bloods now , but i think you are probably overmedicated. "
A dose reduction from 150mcg to125mcg ensued the next day , and the bladder symptoms were very much improved by the time i went for the CT scan .. and the ?kidney/ back pain was better by the time i saw the consultant to discus the normal CT /colonoscopy / endoscopy results.
That was a few yrs ago now (2016?), and i have had no return of the bladder issues or ?kidney /back pain .
I'm now on 112.5mcg usually , but last year i tried a few months of going back to 125mcg
just to see if it would shift an unwelcome spare tyre i was growing. and one of the reasons i stopped it and went back to 112.5mcg was the return of more frequent trips to the bathroom and noticing every trip out involved me saying , "hang on a minute , i just need to find a loo ". (the other reason was my sleep was becoming less good again, and my calf muscles were getting tense)
I suspect that it took many months of overmedication the first time, before the bladder issue got to be a significant problem.... but subtle signs of this returning is one of the clues i now look out for to help me monitor my thyroid hormone dose ."
I can't believe you mentioned this! I've been peeing every 30min and sometimes every 10 minutes. The last two weeks especially I've felt pain and pressure from my bladder even after I go. My testicles started to ache really bad. I went into the urgent care yesterday. They assumed I had a uti or cystitis based on my symptoms. They tested my urine for bacteria and found nothing. So they said I must have prostatitis and they gave me a intramuscular shot of some sort of antibiotic and then gave me 4 pills of azithermyacin? Not sure if I spelled that right. She called it a Z pack.
I was curious if it was related because I started the frequent urination when I became overmedicated on 150mcgs. I was getting up like 10times a night I kid you not. It's calmed down quite a bit to only 2 or 3 times a night and that was 6 weeks on 112mcgs. And I make sure not to drink much past 6pm. The pain and pressure from the bladder and the achy testicles started a couple weeks ago or maybe 3. But when I went up to 125mcgs for 4 or 5 days and my tachycardia came back, the bathroom trips definitely increased noticeably. There must be a connection. I was surfing through the forums for prostatitis and some of them said they later found out they were hyperthyroid and once that got that under control it went away after a month or 2.
Yesterday, I was like "great, I have prostatitis or cystitis?! What else can life throw at me right now" thank you for telling me this! I was in Urgent care literally yesterday for this problem! Thank you 🙏🙏🙏 Truly!
To look at this from the other point of view, it was when I was undiagnosed and hypothyroid that I had poor sleep. It slowly resolved as my dose of levothyroxine rose to a decent level.
I would fall asleep fairly easily, but wake after half to two hours and find it very difficult to get back to sleep.
I think it ever so easy to consider a symptom as being associated with either hypothyroidism (or under-dosed) or hyperthyroidism (or over-dosed) - and miss that so many things can occur in either direction.
I've read a few medical studies that high cortisol or too low of cortisol can happen in both cases of hyper or hypo and cause sleep issues. Both stated the issues go away but they didn't state how long it took. Same thing with heart rate variation issues (time between beats). Both hyper and hypo have poor HRV numbers. And it goes back to a better range when it's better controlled. So in your case specifically how long did it take for sleep to get better when you found a optimal dose for yourself? You said slowly but was it a month or 2? Hopefully not 6 🤣🙏
It took, I think, five dose changes. Which would have been quite a few months. But, on the positive side, my sleep improved a little as soon as I got any levothyroxine and continued improving.
But it's not just about getting the right balance of thyroid meds but also cortisol and sex hormone levels, etc .. ie thyroid meds might be spot on but cortisol that is elevated (fight or flight), or depleted and replaced with spontaneous bursts of adrenaline making us feel heat and our hearty beat fast. I also felt that internal vibration thing like being plugged into a fridge!.
It can also be about blood sugar issues where we have that need for food after eating (insulin resistance) and the 3-4am low blood sugar nightly wake-up by a liver lacking glycogen reserves required for conversion by the adrenals to keep blood glucose levels balanced throughout the night.
Or depleted neurotransmitters such as serotonin produced in the peripheral but also central nervous system that is regulated by thyroid hormone, and is the precursor to the hormone melatonin that helps control our sleep cycle.
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No thyroid medication frustrations
Now what do I do 🤦♀️
I may have euthyroid and not hypotyroidism
