Can you become depressed tired agitated just plain out not feeling good
Levothyroxine - What are the effects if you stop taking your thyroid medicine for 2-3 weeks?
Question posted by Bluerosemoon on 3 Nov 2014
Last updated on 10 April 2022
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
35 Answers Page 2
san172
3 July 2017
I was told that I could die if I stop taking my thyroid medicine .
xskylass
1 Sep 2017
My thyroid was also taken out. I was told I had to take the meds for LIFE. If I quit, I could die. My hair is dry and brittle, skin dry and thin... many side effects. Always tired...
AndrewSeth
18 Sep 2017
I actually went about six months after having my thyroid removed, (Papillary Carcinoma) before stating on a levothyroxine regimen. I had my thyroid removed in December of 2011, was in college and decided to wait until after the semester to have my RAI therapy. I was on the low-iodine diet for about a month before my levels were in range to receive the treatment. I will tell you at the end that I was sleeping for about 16 hours a day, mood swings, depression, zero short term memory, etc... Ceasing your thyroid hormone supplement will vary on the amount of T3 your thyroid is able to produce. In my case, since my body had no capacity to make any thyroid hormone, it greatly effected me. Even after starting the levothyroxine regimen, it took a good 2-3 months to even see the light at the end of the tunnel. Your thyroid is part of a feedback system where all of your glands create specific hormones to do specific things (mostly controlled by your pituitary gland).
Since your thyroid is part of that feedback system, it takes time for your body to "catch up" and create a balance. This also works the other way too. If you stop taking your thyroid hormone, for a few weeks, you may not notice a difference right away, but eventually you will notice a difference and it will take time to get back to that point of "normalcy" once you do start taking your medicine again. In my case, I not only need thyroid hormone replacement to live, I am also on a high dose because of tumor suppression. As an nurse, and as a patient, let me just say that, if you miss a few doses, don't worry about it, but depending on your body's ability to create thyroid hormone, this medicine can be essential for living a health life.
Oh..lastly, for those of us who are dooms-day planners and are dependent on thyroid hormone: If society breaks down and thyroid hormone replacement is non-existent. Raise pigs. Harvest the thyroid glands and concoct a soup recipe :) Pig thyroid hormone isn't human thyroid hormone, but it would be the best substitute :)
AndrewSeth
18 Sep 2017
"Ceasing your thyroid hormone supplement will vary on the amount of T3 (AND T4) your thyroid is able to produce."
Jberryman88
7 Nov 2017
Andrewseth I'm in same situation ... I've been without my thyroid since I was 12 and I am almost 30 years old. I I have been off of my medicine for 3 maybe 4 months and have no insurance and haven't been seen by a doctor and a while. But I have noticed swelling in my face hands and feet really bad... Is there anything I can do or take until I go and get seen for a refill? Like supplements vitamins or anything like that. Because of course I've been going through this for a long time but I'm just noticing some serious side effects on top of gaining weight, sleepiness ,moodiness, the regular well for going through it for so long
pkt729
30 May 2017
I stopped taking my levothyroxine 2 days ago and I feel great. I was on the .075 mcg dosage for the last year and before that .100 mcg also for a year. While taking this medication I experienced extreme tiredness, severe muscle aches, severe nerve pain in my shoulders and legs, I became dependent on drinking anything with caffeine that would keep me awake while I was working, I developed plantar fasciitis in my feet, I had constant vertigo, and I couldn't lose the last 20 pounds that I needed to lose. Since stopping I'm not tired, in pain as bad, or dizzy. My energy levels are almost to normal levels. I just want my weight to go back to 105 again (I'm only 5 feet tall and that is a healthy weight).
Sherrey44
31 May 2017
Just an update - Back in December 2016 I went off my Thyroid Medication after 20 odd years & never felt better, I was finally waking up clear headed & with a spring in my step, no more headaches & just a greater feeling of well being. I lasted 4 months off medication before trouble set in with heart palpitations, & high blood pressure & I just didn't want to muck around with any heart stuff so I've now gone back on a Natural Thyroid treatment. Blood pressure still seems to be an issue but slowly settling down. I'm about to go back to get more blood work done so I'll keep you posted as to my progress. I'm disappointed I had to go back on medication but happy it's at a lower dose & a more natural substitute.
Nothyroid2017
15 July 2017
Total Thyroidectomy this year and have been prescribed 150mcg for the rest of my life. Dr advised that I will feel sluggish and will experience severe muscle cramps including my heart... don't like taking the medication but fear the side affects. Dr also advised not to take my iron and vitamin C within 4hrs of taking medicine because they 0 out the thyroid medication??? I've waited till the afternoon to take my medicine and felt lightheaded and nauseous. I chalked it up to not eating till the afternoon. My weight goes up and down by 4-5 lbs. weekly. I'm 214lbs and usually weigh 185-190 tops. I want to stop but read about coma and possibly death... will speak with my Endo about stopping or at least go "natural"
Maz1981
5 May 2017
I stopped taking my meds 4 months ago, because almost 1 year ago my face broke out in this horrible rash of some kind. With various trips to the dermatologist nothing I took made it better..so i thought i was having a side effect to the meds, when I stopped the meds my face started to clear up, I got my TSH results yesterday it's 286 and my T4 7. Something I can't remember but the Dr wasn't happy. I'm going to see a internist next week ... I have gained about 10 pound being off the meds and major forgetfulness. but I'm afraid to start meds again .
Inactive
4 May 2017
I was wondering about this myself, what would happen if I stopped taking my thyroid medication? I have Hashimoto's thyroiditis, and heard it can fluctuate. I have seen several people post that they felt better after they quit their thyroid meds. I take Nature-Throid.
Inactive
16 Sep 2018
UPDATE: Well, I went ahead and QUIT my Nature-Throid for almost a year! ( I couldn't tolerate levothyroxine, so I was taking a natural desiccated thyroid med instead). My doctor closed her practice and I couldn't get my pills refilled, because my last prescription refills were for 81.25mgs (1 1/4 Grains) which Nature-Throid quit manufacturing during that period of time. I was only going to walk-in clinics, but continued looking for a primary care doctor. After a period of time, my body started going downhill fast.
I have a new doctor now, and got new lab work back, showing that my thyroid levels were WAAAY out of whack! My nails were literally peeling off - thin as paper and splitting up the middle, dry skin, I gained weight (13pounds), felt cold a lot of the time, hair thinning... but the most horrible, very worst reactions to quitting my thyroid meds were the unbearable anxiety attacks and panic attacks that I started suffering from and early morning awakening anxiety, and many sleepless nights. And I didn't even realize that not taking my thyroid meds could cause anxiety to that high of a degree! I started taking several natural supplements to treat my health problems, but it wasn't enough (although very very expensive!).
I needed to have a lot of dental work done, but the panic and anxiety attacks had become so strong that my dentist advised me to find a primary care doctor ASAP and have a good checkup! Well, he was right... My new doctor (she is a God-send!) put me back on thyroid meds, an anti-anxiety med, and a new antidepressant that I had never taken before, and the AD started working right away, unlike most of the ADs I had been on in the past. In the process, my hair stopped falling out and getting shiny and thicker again, nails are so much healthier, not cold anymore, I have lost all 13 pounds that I had gained, and most of all, the anxiety attacks and panic attacks are NO MORE... YAY! I feel so much better.
So, my advice is to think twice before quitting your thyroid medication without the supervision of your doctor. It takes a long time to get back some sense of normalcy. Oh, sure, I felt fine for a few months, then it hit like a ton of bricks. My health store friend where I buy my supplements took one look at me and said "Girl, you're dying!" My digestive system was out of whack and I had a hard time even absorbing the very "expensive" supplements that were supposed to help me to get better.
So please take a lesson from me -- and discuss all this with your doctor BEFORE you make a decision that you will regret later. Thanks for listening, sorry I rambled on...
Molly42
25 March 2017
I have found that this medicine causes more grief than help. I have gained weight, felt listless and fought sleepiness during the day - even at work while very busy! After stopping for 2=3 weeks, I slowly started to feel more 'me', i.e., energetic and 'wanting' to participate in activities that require energy. I haven't seen weight loss yet but am hopeful. Overall, I feel this medication was more hurtful than helpful.
joaniehs
6 March 2017
my brother passed away last year from stopping his medication. he had hyperthyroidism... he was always cold, sweating n tired n lethargic. hair was falling out. i miss him a lot.
helek
30 March 2017
are you saying he died from stopping the medicine? did the doctor take him off of it?
joaniehs
30 March 2017
yes and then when he was asked to retake it again, he was so sick of it. He was so sick of all of the pain he was feeling, the cold the hot, the back and forth, the emotional roller coasters, the being tired all the time... it got to be too much for him. He did not take it thereafter and it created a serious thyroid storm for him that he thought he was going to be able to endure and bypass. Unfortunately, that did not happen. He passed away in his sleep on April 10, 2016.
Leighelizabeth
11 April 2017
Hi everyone I am on 200mg if thyroxine just over a week ago I ran of medication and I am waiting for a prescription to be done ever since I stopped I have been suffering with servere headaches has anyone else had this problem
Inactive
12 April 2017
Im sorry to hear that and in this case im also sorry to ask u this, but how long was he off levothyroxine and did he have other problems that may have contributed
To his death besides the lack of this drug? 2 reasons i ask is: 1) i read u can go into a coma if u dont take it, and 2) I have as many symptoms being on the drug as if i were just diagnosed having to start taking it and feel i have more problems after taking it 4 several yrs. Thank you
Kshee75
29 April 2017
I'm super concerned. I'm so sorry to hear about your brother. I'm a 15 year old girl who was diagnosed with Hashimotos hypothyroid disease when I was 11-12. About a year ago I had to stop taking my med. (levothyroxine 200mcg) Bc of loss of insurance and $$. I have not seen big symptoms like listed above of major fatigue and what not. I have not been to a doctor in a year or longer however, and I don't know what's going on .. I went to the web to prove my grandmother wrong that I would not be seriously hurt if I was off my medication, but after reading this article I'm very concerned on what to do and what the actual risks are with not being on the medication Bc some people on here say "oh you'll be fine, I'm living proof" and others are saying "you could die in a coma" please help .:(
Winterberi13
28 July 2017
7 weeks ago, I too stopped taking levothyroxin. Had been on it .25 mcm 4 years am 118 lbs weight has not changed , yet emotionaly down. Had some heart palpations 2 weeks off. At first energy increased, now force myself to take morning walk. It seems my hopefullness about living has taken a hit. Yet no plan to end things ..will continue to monitor symptoms .. no hair loss. Skin is dry as it was when taking this med. Am on no other medication. Am taking natural vita d and b12 complex. Turmeric and cayanne pepper for pain .. 1 teaspoon each every morning stirred into plain yogurt .. it helps with joint pain.
joaniehs
28 July 2017
He stopped taking it for about 3-4 months. He got thyroid storm which was rare but i am hearing people get this more and more. Take care of yourself. You need to know your body and if its an every other day situation, make sure yr dr is regulating u and yr meds,
levodemon
20 Feb 2017
Hi everyone here who is still responding to this post :-)
Just a little story of my situation whilst on Levothyroxine for 7 years.
over the years i can only assume my dosage of this drug has been ok, though moodiness and stress levels increased over the years i never thought too much of how this drug was affecting me, as when your told u need to take it for the rest of your life u dont really ask questions do u? or maybe thats me being niave.
Anyway over the last year 2016-2017 i started having anxiety, im 32 and have never suffered with this in my life, over xmas last year started getting a dreaded feeling like something bad was going to happen an uneasiness feeling, also restlessness cant sit down for 5 minutes too much energy panicky feelings, pamlpitations, loss of appetite, diarrea...
after having a horrible anxiety attack xmas eve! which made me feel like i was going mad and needed to be hospitilised, i basically went through a living hell that ruined my xmas with my children!! i finally went to the docs who surprise surprise gave me anxiety meds, which i took for 8 days but didnt do anything at all... then came the blood tests that indicated my dose of levothyroxine needed lowering to 75microgram from 100, but the doctor was confused and worried she even said this!! about my levels which she said u need to make sure u come back after 6 weeks for another blood test? now i have not got much understanding of the levels and what they should be until reading about them recently...
Anyway after reading the leaflet from the levothyroxine box of the side effects of too much levothyroxine, i was surprised to find that i had been having every single side effect bar hairloss!!!
i was then very annoyed that my doctor had not picked up on all my complaints recently and linked it to too much levothyroxine...
So i thought i would put matters in my own hands and have stopped taking this drug this is day 7 and surprise surprise every single symptom i have been having has stopped! the main one being anxiety!! panicky feelings! palpatations! i feel normal after a year of feeling i can only describe as being plugged into electric and wired up, i feel i have now been unplugged and feel myself again!
I just cannot believe that the suffering i have had over the year was down to too much levothyroxine!!
Anyway i have a blood test this friday and i will then explain all this to my doctor and ask to see a specialist as obviously my doctors do not have enough knowledge of this condition, and i want to be properly informed about this drug and also what else i can take or even if i need it at all! or maybe something herbal instead.
I would love to hear your opinions on my story and any advice as i know a lot of u are really up to scratch with this drug please please add your responses im so confused!
thanks for reading :-)
Donna1106
16 Sep 2020
I’m exactly the same! Been having panic attacks, sore throat, saliva sickness, racing heart, feel of confusion, was told it was antibiotics but was still feeling the same after them, I stopped Levothyroxine for one day and already felt an improvement, the dr says not to stop it so I took it again today and have spent the day anxious, pacing the floor, irritable, sick, I’m stopping mine for food tomorrow! I feel like I’ve been poisoned
HelenR65
21 Jan 2017
i am the one with the question
Maddielee5
11 Jan 2017
I was diagnosed with hyperthyroid after having a child in 2004, but didn't go to the Dr. for my weight loss, shakiness and muscle weakness until 2005. They treated my high thyroid and gave me low, I instead. I am now on 200mcg and five kids later...
I recently ran out of my meds for a week and experienced a ton of problems... I am suffering from depression for other reasons, but not taking my meds on a normal basis, I seem to get angry easily. Also experiencing new stomach issues. Sleeplessness, sweating. This has all started after having a really hard time remember g to take my meds. And it all got worse after a week of not taking the meds at all. So, I'm hoping getting back on them yesterday will help straighten everything out. Here's hoping...
When I was first diagnosed, my drs wouldn't discuss anything with me. So this is my friendly little reminder to everyone that you are your own health care advocate. Never stop asking questions and never settle. It's your body and your life! I didn't know until two years ago how much the thyroid affects..
Good luck to all and hope everyone has a healthy year.
Aylish48
6 March 2017
I so agree with you on being your own advocate. I have been on meds for 20 years and it was only 2 years ago that an endo told me that gluten was toxic to those with hashimotos. Sure enough, after dropping gluten for 2 months, I became overmedicated. I also started having problems with cruciferous vegetables. It is so obvious that our diet plays a critical role in our well being and yet it is virtually ignored by most medical professionals.
Andrew6652
7 Sep 2017
If you take any form of caffine stop. I found out so late that people with thyroid issues can be super sensitive to caffine. It made me irritable and angry. I am a much calmer person now, much happier.
Aylish48
24 Nov 2016
I went off of levoxthyrine for a year after 20 years on the stuff. I felt better almost instantly. My TSH indicates that I need it so after feeling fine, I was prescribed it again. I'm on .175 mcg and I hate it. I'm gaining weight, I hurt all over, I have horrible anxiety and so after tomorrow, I'm taking the advice of my endo (he told me to get off of it, my general physician wants me on it) and I'm done for good. I will let you know how I feel and for those duped into believing that you will die (I was told the same thing) unless you have had your thyroid removed, I doubt it. I have NEVER heard of anyone actually dying from stopping this drug and since I have already done it I am proof that you will indeed live, I say dump it and see if you don't feel better
Debra1988
29 Nov 2016
I too, have been taking it since 2002 and quit cold turkey about month ago now. I feel ok, but I feel my breathing has slowed down, my skin feels dry but it always did... I always use lotions, anyways and it could just be because of the weather becoming colder and having the heat on now. I still have my thyroid so, I'm really not that concerned ... the more I see others quitting also!! I think maybe I could lose some weight because I seem to have a decrease in my appetite... I'm not sure yet, it's just been a month!
Anirudhs31
16 Dec 2016
Hi Aylish48: I recently stopped my hypothyroidism meds of 100mcg a day and have not felt bad at all. In fact the weightloss plan that had stagnated for years has started working again (I control my portions and walk 10,000 everyday) from 84 I went down to 82 in five days. Just wanted to ask if you are still off the meds and if yes how do you feel? Thanks
Sherrey44
12 Jan 2017
Thanks for the feedback. I've been on Oroxine for 20 years & just went off & am actually feeling better. Less head fog, heart palpitations, I'm sleeping more soundly but I have concerned friends that scare me a little with stories of my body shutting down & falling into a coma if I don't take the medication.
Aylish48
22 Jan 2017
I was fine for about a month and then I started having really scary heart issues. I made the decision to start synthroid at a lower dose but I will still never take levothyroxine. I also went gluten free and quit drinking alcohol. The same end who told me to consider getting off of meds also strongly suggested a gluten free diet and he was right. I have always had digestive problems and now I feel so much better. The heart issues went away and not drinking helps with just about everything. I'm going in to have my blood drawn soon as being gluten free lowers your need for the meds. Gluten apparently mimics thyroid tissue and causes your autoimmune system to go into attack mode every time you eat it. Try being gluten free for a month and see if you don't feel better.
Sherrey44
23 Jan 2017
Yes totally with you on the Gluten issue, I've cleaned up my eating, I don't drink alcohol, & I'm still feeling fine & it's now been 6 weeks free from medication (was on 175 mcg). I'm also aneamic so am struggling with that as well, but I'm taking liquid iron 3 times daily & doing all the right things, so I guess we'll see how we go. It's just a little scary reading some of these posts. Thanks for the reassurance.
Aylish48
23 Jan 2017
You're welcome sherry44! Stay in touch and hang in there. I'm here anytime and I hope I can ask for your advice too, heaven knows we need each other!
Jan Lavik
23 Jan 2017
Any time I've missed a day or two of my 25mcg dose of levothyroxine I have more energy and feel better. My doctor has suggested a higher dosage, but when I tried that I lacked so much energy I could hardly function. My current prescription expired causing me to go 5 days without my med. I am more energetic and feel great. Can I continue to go without the medication without any side effects?
FALDET22
24 Jan 2017
i ALSO HAVE THINNING HAIR SKIN RASHES AND WEIRD SCALY BUMPS TIRED FORGETFUL DRY SKIN OBESE..WENT FROM120 TO 175... HARD TIME SLEEPING TAKE A HISTAMINE EACH NITE AND STILL GET HOT FLASHES YET I CEASED MENSES ALMOST 3 YEARS AGO.. I AM ON THE LOWEST DOSE AND FORGOT TO TAKE IT TODAY AND JUST REALISED AND I WAS MORE AWAKE AND LESS ANXIOUS,,HOW ARE YOU THAT QUIT 'L' DOING?
Carol78
25 Jan 2017
today - Jan. 25, 2017. I have been on crappy thyroid med too - long time... 20 plus years. I quit it - all on my own. never felt better. Get off this crap as soon as you can & find ALTERNATIVE natural meds... nox vomica (?)... Eat healthy, drink TONS of water - and please - DO YOGA. I only gained max of 30 lbs, but that's what eating Fried chicken & mac n cheese will do to you (luby's)... I usually maintain high school weight - 145 - 150... but I realize I have suffered terribly due to EFFECTS of the drug. Nervous. Fog. Memory Loss. EXTREME HEAT - sweat - suspicious - ANXIETY - horrible horrible HORRIBLE suspicion - (( --always can be worse, I know )). I did not die from being OFF synthroid. I am only at 100 mg.
Sherrey44
27 Jan 2017
Great to hear Carol78, that's very reassuring. I'm still doing well, just sometime a little anxiety creeps in or if I have any dizziness or headaches but I guess 20 years of taking this drug has got to take a while to get out of your system.
Iulisca2000
26 Feb 2017
Any news on how u feeling off levo ?
JeanB67
4 March 2017
I have been off my levothyroxin for 2 days. I'm hoping I start to fee l better. I don't feel too bad so far. I was taking it since diagnosed approximately year ago. I gained about 40 pounds and nothing I do helps take it off, in fact keep gaining. I am so tired all the time, bloated, stomach issues, hair loss, achy legs, just never feel good. I've heard a lot about changing my diet and different vitamins that should be taking. I'm going to see an endo in few months, soonest I could get in, and heard the one I will be seeing is great with helping with guidance for diet and helped a friend of mine. Hope I can just stay off the meds until I see him and if have to be on meds, something that will make me feel good. Hope you all are doing well.
Aylish48
4 March 2017
I couldn't stay off of it, but I did switch to synthroid, stopped eating gluten and am now overeducated again due to the gluten adjustment. Try going gluten free or at least read about how gluten mimics thyroid tissue. So far, being gluten free has not been awesome due to the toxin flush, but I feel positive that in another month, I will feel a lot better.
Heatherlylopez
14 June 2017
How are you all doing now? I'm going to try clean eating, with mainly fresh fruits, veggies and meats. Every time I eat white anything I get sick and instantly tired. I became anemic after starting levothyroxin last year (after baby number 5), on anti depressants , and i sill feel like crap.
According to the doctors my thyroid levels are good now, but my period is messed up bleeding 2 weeks heavily now. Just miserable.
I asked again my endo to switch to armour from levothyroxin, she said if I feel that strongly to find someone who will prescribe it. :(
Tickledpuppy
21 Aug 2017
I have been on Levothyroxine 20mcg for two years now. I'm 5'8" tall, 65 year old male, and I have been unable to lose weight even with a massively altered diet. After strokes in 1999 and 2001, I spent 15 years in wheelchairs. In the chair, I gained weight from 190 to 280. I'm at 290 now, have been as high as 310. I thought this medication was supposed to help control my metabolism. So far it has done nothing. I've noticed that others here are taking a lower dosage. I also take hypertension meds, diabetes meds, a statin, and aspirin. There are times I just want to chuck all of them in the toilet. I've accidentally missed doses from my daily med box, and nothing bad happened.
Lynds2984
21 Sep 2017
Hey all
I have been on 125mg of levothyroxine for 4 years now and decided that I would come off them last February I started to take iodine and selenium I felt great at first but last few weeks I have been really low and not to mention I have gained a huge amount of weight
Sassymlw
28 June 2018
I would not stop because if you do you have a good chance of getting thyroid cancer
Holls3
16 Aug 2018
Aylish48, how are you doing now? I've been on levothyroxine for close to 20 years and recently went off all medications except this one. I would very much like to stop so I can be completely "pharma free".
Ccm012
27 Aug 2018
Any updates you can offer? I've been off for a month and yes, afraid I'll die but feel so much better off.
Donna1106
16 Sep 2020
I agree! I stopped taking it for a day and instantly felt better, took it again today and have saliva sickness panic attacks racing heart sickness, I’m stopping tomorrow for food! It’s poison this stuff!
Atpubice1
20 Nov 2016
I have been thinking about stopping my does of 100 for a while now. I had a growth a few years ago but never needed the meds until I was pregnant. my daughter is now eight. I have days where I am so tired and days I feel good so I'm just thinking will I be the same without the meds. I have gained weight however I have been a so tired even on meds to do anything. I've read some replies above about people having more energy and brain fog reduced since stopping so I'm swaying that way I'm just scared I crash. I be been depressed on the meds and anxiety my depression is better now but I'm scared this stop may start it. But I in my heart feel the meds do no good. I didn't order last meds as forgot so I've been off for two days at the moment. If anyone has been off longer please let me know how you feel
Thanks x
prnance1958
22 Nov 2016
I have been taking levoyhyroxine for 5 years. I have had many different dosages of this med. I currently take 88mcg. For one week I didn't have it refill, I have fatigue, anxiety. I do not feel like doing anything. I lost a total of 40 pounds in 9 months. It has been a struggle to loose the weight. I continued to fight through it. I made a Healthy Lifestyle Style change. I struggle with bloating daily. I do not recommend anyone to stop taking this med on their own.
MsJeannie
22 Nov 2016
One problem my husband tells me about (He is a physician) is that most doctors only prescribe the inactive form of thyroid medicine. The doctor will usually tell the patient that the inactive form converts to the active form. This is not true for many people and is a cause of problems for many. There is even a group for people who are frustrated with this. Armour Thyroid, Nature Throid are a couple of the brands that carry both active and inactive thyroid medicine. check out Stop the Thyroid Madness. You'll be glad you did. You can also find doctors who will prescribe medicine with both active and inactive. Wishing you the best.
Jan Lavik
25 Jan 2017
I have been off my low dosage for a week. I have more energy and am feeling great. I've been warned not to stop but I know a an increased dose makes me lethargic. My prescription is finally ready for pickup and I will probably get it, but I'm not sure I will go back to taking it. I want to see if my weight will drop without it. My heart rate and blood pressure are really good. I have an appointment with my cardiologist March 1st. If I continue to feel great I will probably discuss it with him then. I don't want to mess up this upbeat energetic me.
3kees
10 Feb 2017
Does the active and inactive help with hair loss and split nails
Jan Lavik
18 March 2017
I've been off two months. Weight has stayed about the same, probably a bit lower. My energy level is much better and I'm feeling more upbeat. I was only on a very low dosage. Haven't had a doctor's appointment since. I emailed my cardiologist and he advised consulting my primary care physician. It was her office that delayed refilling my last prescription that gave me my first week without it.
Jan Lavik
24 Aug 2017
Been off since January. Had blood tested.in April. Thyroid came out normal. My doctor is keeping an eye on it. I always had more energy without it. I'm not sure the med is for everyone.
Arizona7
14 Oct 2017
I've been off of my thyroid meds for 3 weeks, now. Today I passed out at work. My heart feels like it's going to blow up
Mrazzi50
19 Jan 2018
I am Terrified. I have stopped my dose of 150mcg. PD empty stomach ...
Had bleeding headaches.
I have been in bed for a week now and very depressed and I know that I have to start the meds again. I don't know what dose to start with
Dclfton
3 June 2018
Me Jeannie, thank you so much for the info I just was diagnosed with hypo and started Levo and have been trying to find out as much as I can about it. Stop the thyroid madness is great! Is there any success stories with this med? I don’t see why they even prescribe it when it appears to do more bad than good.
Jan Lavik
10 July 2018
I've been off a year and a half. My thyroid tests keep coming back normal. My family physician and cardiologist keep monitoring the results. For me higher doses always had an opposite effect. Made me lethargic. I felt so much better off the med. In my case there was a week delay in getting a refill so I had a chance to try the way I felt without it. My doctors were concerned that I stopped taking it so they keep an eye on my test results.
dabuzzkill
25 Oct 2016
Wow. Thanks all for the contributions to this topic. I recently ran out of mine. I am age 44 and started Levothyroxine about 8 years ago. I never attributed my weight gain to this drug. Rather, I assumed it was a byproduct of hypothyroidism. But in hindsight it ties in with my weight gain as I was always able to keep weight off being active. Of course it could be due to the fact of getting older a s well but hey... I figure if I can ween off a bit, I can see what my body really does.
Whisper85
30 Oct 2016
Be careful my dear I care deeply. Found out I have been hyperthyroid for months! My meds were lowered! Praise God I almost died. I am in starvation mode. My body was completely depleted after Months of being so sick ... losing 20 pounds, and going into Tachycardia. My Anion Gap was low. Passed out after 3 days off Thyroid meds... severe fatique... injured my back ... fell on tailbone, compressed a disk. I am on 50 mcg. Once a day, finally raise a tiny amount today TSH was 6.0 from Tsh at 0.1 when I posted for months before ... I was in serious danger Thyroid Storm toxic horrible reaction.
askyttle
31 Oct 2016
I most recently, about one month ago, stopped taking my Levothyroxine. I was away, and forgot to have it refilled.
I've been on 125 mcg does for over 20 years now. I've always felt that it was not helping, and to my surprise, since stopping, I feel better than ever! I've lost 11 pounds in 2 weeks.
Just wondering if I can keep not taking it or if I should start it again.
I understand people without a thyroid gland need the dose for support, but what about those of us that have a thyroid, but it just doesn't work well?
Debra1988
29 Nov 2016
I did the exact same thing about a month ago. I have a under active thyroid. Do you? I, like you, have always weighed a lot less up till starting the meds! I just quit cold turkey mainly because I couldn't afford doctor co- pay and to get pills refilled. I have been the only one working for 21 months due to husband's cancer and treatments, doctor visits etc. So, I felt, I had no real choice. I was on the 125 mcg since 2002.
FALDET22
24 Jan 2017
HOW ARE YOU FEELING/ did you lose more weight?
Inactive
12 April 2017
Ive beennon this for several yrs but like taking any meds. I went off of it April 5, 2017. Here it says u could lapse into a coma if u stop. My symptoms are the same on the drug as if i were first being diagnosed and im sure i was supposedly in need of the drug long b4 my dr told me i needed to b on it. So now im trying to find out as i seem to be not able to remember some words i would just think of 2 minuets ago. So i think its this drug ive been on for 7 or 8 yrs.
llm2000
8 Oct 2016
This got long. I apologize. This is years worth. I hope it helps somebody. It appears to be too late for me.
I'm just a regular person, who struggles with understanding, too. Let me just say first, I get it. All of us with thyroid and medication issues aren't heard. It's a fact.
Another fact (that doctors didn't tell me) is that the thyroid manages your energy and metabolism. Levothyroxine replaces what your thyroid no longer has. It does not replace the energy and metabolism that a real thyroid. Medications don't always fix things. They can make it worse.
I have Graves disease (the autoimmune kind of thyroid problems). I had the radioactive iodine (big pill) for treatment of mine. And lo and behold a lifetime of Levothyroxine comes along with it. A lifetime of a whole world of hurt (physical and emotional) comes with thyroid disease. More and more brand-new-to-you diagnoses due to having the side effects. Read what all I have been diagnosed with since my thyroid/Levothyroxine problems started. The diagnosis is at the end of each one.
*I was124lbs my whole adult life. I am at 203lbs now. [Sedentary Obesity]
My hair was shiny, full and manageable. My brushes, combs, shower, sink and floor are full of hair now. What is left is oily looking strands with no life. [Stress, some medications]
*My skin and scalp are scaly dry. I have these dry bumps all over now and have had to have some removed (under the bra and panties area and off the scalp). I see new growths every day. [Multiple Keratosis]
*I was very active before. I became isolated, depressed and have anxiety for good measure.[Agoraphobia with Major Depression and Anxiety]
*My legs ache, hurt, swell up, throb, have cramps and are weak [Venous Insufficiency]
*I've had stomach problems, headaches, memory loss, urinary problems, and 5 surgery due to bone loss.
*But, the worst thing, the VERY worst thing for me is the sweating! I cannot get comfortable anymore! I'm in an apartment building. It is so hot in here all year round. I've been here 4 1/2 years and I've never used my heat. I ran the air conditioner during some of the winter... in Minnesota!
I am now learning about "natural, normal and organic" help for thyroid. My goal is to be healthy
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once again. I cannot be that on all these medications for the above. It's crazy.
Whisper85
13 Oct 2016
Pray your doing better, my heart goes out to you! Hope you are more well.
Kelly A
15 Nov 2016
I started with 1 pill. Levothyroxine after I had my daughter in 2012. Even during my whole pregnancy I never had ANY issues with bp or cholesterol. I'm now on meds for those too. I am 29. I went from 180 to over 300. I would look at a salad and gain weight. A few months ago I stopped, just for a few days and my gut went down and I noticed my pants fit better. I'm going to listen to my body and wean myself off of this drug. It ruined my body!
dusty60
12 Dec 2016
I was dx with diabetes, hypothyroid, gastroparesis, etc in June of 2015. The doctor and I fight regularly about the meds, lab tests/results. I am a LPN of over 30 years and it is difficult for me to blindly trust her. Good thing I can research on the internet now. I started levothyroxine 75 mcg and developed the worse lesions on my shoulders and arms. The doctor said... don't worry, it will go away. Next she said it was scabies and prescribed a poison. Nope, didn't even bother.
My gastroparesis got worse and my blood sugars went into the 600's. Again the next doctor said, don't worry... and decreased the levo to 25 mcg and things started settling down. The next NP/doctor said I had to increase up to 100 mcg over a period of time or I 'may' have major problems, plus start lisinopril 2.5 mg because it 'may' help protect my kidneys. (I was going to a clinic that rotates clinicians.)
I started with nerve bursts in my legs that would put me on the floor, my weight went from 175 to 204 in less than 3 months, I started having shortness of breath, unable to walk more than 20 feet, I started coughing at odd times. I couldn't stand more than 3 minutes. And many other things that put me in bed for hours every day and night. I complained and was told (all together now) don't worry, it will go away. One even said, it can't be that bad, you made it here... grr.
I stopped the levo and all the problems are slowly going away. The lesions was so bad on my head that I couldn't comb or brush my hair. One doctor said oh, they are from bedbugs and, you guessed it, prescribed a poison. Not scabies nor bed bugs people, allergic reactions to levothyroxine and possibly to interactions with the diabetes meds. Not all conditions need medications as not all people will benefit from it. You know what is sad, the only thing about any skin condition mentioned in the official pages is rashes. I know for a fact that many people complain of painful bumps that seem to follow a nerve (like mine on the head) and are so painful and bleed and ache and seem to take forever to disappear.
llm2000
13 Dec 2016
I feel so bad for all who are suffering through all this. I no longer get the "Don't worry - it will go away". In the beginning I did and I believed it! They (the powers that be) know me now, and know I won't leave the exam room if that is all they have to say. Seriously, one doctor (this is back awhile) said I'm bringing this all on myself. I asked him "Where in the world do you get that from? Show me where you got that - in my records? - in a medical book?" He couldn't answer it, of course. He never, ever said that again. LOL Sometimes, they need to be challenged. Low on energy among all the other stuff, we don't feel strong enough to challenge what they say, normally. But what they do say is not an answer. I wanted to be a nurse, but that didn't work out.
I did work 33 years in the medical field in various areas - started in nursing homes and then went on to clinical doing everything - lab, back office, front office, muscle therapy's, and finally bookkeeping and insurances which is where I met my calling. Although that can help when we are doctoring because we know enough, or it can help because we know where to dig for the help. Anyway, I have my faith which is what matters. They can't take that from me. I'm finding my sense of humor again, and I get by that way, too. Best of hugs to all.
amy beitelspacher
19 Dec 2016
I swear levothyroxine has "poisoned" me. Sounds dramatic but I have had nothing but problems since I began taking it. Looking back over the last 10 years of being on it makes me question all my complaints. The more blogs I read about this med, the more I think it could be the problem. I started out on 50mcg and have recently been on 88mcg. My first symptoms where feeling like someone was poisoning me. I researched dental fillings, stopped drinking pop, etc.
Symptoms in order of progression:
Shortness of breath, chest pain.
Lymphodema under my left arm into my armpit the size of a small orange.
Muscle aches and weakness... stiffness to the point it was hard to start walking after sitting for awhile. Tightness in my hands and feet like rubber bands pulling.
Terrible constipation to the point I had an ultrasound and was completely full and had to drink that bottle of crap they give you before colonoscopy
Weight gain, looked like I was going to pop from fluid.
Low grade fever all the time.
Terrible night sweats.
Sores on my face that looked like cigarette burns.
After seeing multiple doctors and dermatologists they came to the conclusion that I had a "mixed connective tissue disorder".
I was referred to Mayo Clinic. Frustrated beyond belief by all of this because I was fine! Fine. Nothing wrong with me. My TSH was normal and my T3 was a the low end. I find it had to believe all of this progresses out of the blue. I have stopped taking my thyroid med for a week and I already am feeling better. I am at the point I am not certain but strongly leaning toward a problem with this medication.
Daisygal123
2 Jan 2017
I've been taking 50mg of thyroid med. I just stop it after almost a year. At first I was taking 25 mg. Then in Sept I was boosted to 50. I started noticing rapid hair loss. It truly freaked me out as to how quickly it started happening. I read that the meds can cause this. So have stopped taking it. I was told the hormonal part of my thyroid was slightly low. I was always thin. Suddenly started to gain. So my doctor put me on the thyroid low dose med. I lost 16 pounds. But my hair is more important then weight control. I'd rather workout extra. Then lose my hair. So no thanks to the meds.
Kyliemuriel59
20 April 2017
I really think you can't go of this medication as its highly dangerous as ive been told as i did it. It can cause bad things and you die from not taking it
Jlq1112
24 April 2017
OMG! I absolutely feel for you! I'm in tears reading this because it sounds exactly like my own situation. I wouldn't wish it on anyone, but I feel somewhat better hearing that I am not alone. My doctor keeps raising my dose when I complain of any of the issues. I have Graves' disease, I also had my thyroid removed. I vomit every morning, I have weight gain, hair loss, dry skin, cramps, terrible headaches, depression, chronic joint pain, hypertension, high anxiety and I am already bipolar. I just found out that my doctor cannot raise my pain medication dose because of new regulations and I can barely be active for an hour without ending up in bed suffering horrible pain for the following two days. I have been dealing with this for almost 10years. I've only been on thyroid Meds for maybe 5years. This has taken over my life. I used to be a very outgoing happy person who loved spending time with my family.
Now I am in hiding and don't speak to anyone, don't go anywhere unless it's totally necessary and I think about how much better life would be for everyone if I wasn't here. I don't think anyone that hasn't gone through this understands how it can really effect your life. I would love to try something other than the prescribed thyroid Meds to survive. Does anyone have any suggestions?
Laurenkay314
5 Aug 2017
Sorry I forgot I'm on synthroid 125mcg now not levothyroxine. My endocrinologist said that it didn't have enough of the real medicine in the pills perhaps because my tsh level was so high without a thyroid it was 5.12. He told me that not only can levothyroxine differ from pharmacy or prescription but that it could also fluxuate up to 20mcg above or below the amount it says pill to pill. Switching defenitly helped lower my tsh. During my blood work he found that I had really low b12 levels and vitamin D I was then told that I had rickets. I was told to take both vitamins daily now too. It helps with my energy some but not much I fall asleep easily and have been getting headaches almost daily now too. I also have chrons which I read can have some effect on the medicines ability to break down. I was told to take my meds at the same time everyday and at least an hour before eating and also drinking anything else. If your to take anything else wait 4-6 hours after to do so.
party1202
13 Dec 2017
I’m so sorry for all your going through. I most definitely am empathetic with what your going through. For the last 1 1/2 years I’ve been dealing with both papillary and follicular thyroid cancer. Of course for me everything has been super complicated. The cancer never hit my thyroid but went straight to 16 lymph nodes and 4 weeks after the highest dose of iodine therapy the cancer is back. But good thing is that I live is California and am seeing the #1 Endocrinolgist in CA. He has me on 400mcg of SYNTHROID and SYNTHROID ONLY!! Levo thyroxine is NOT a substitute for SYNTHROID! THEY DO NOT HAVE THE SAME PROPERTIES! Especially when you have hypothyroidism due to thyroid cancer. Plus the side effects with Syntroid aren’t as bad as Levothroxine.
I hope this helps.
Donsmar
9 April 2018
I started taking levothyroxine 47 yrs ago, after having my second Son. I have on & off struggled with weight my whole life. 11 yrs ago I seriously went after my weight gain. It took me that long to go from 197.5 to 137 by not eating as much. 2 weeks ago I mistakenly stopped taking my levothyroxine of 75 mcg daily, after 2 weeks I felt sluggish and tired, gained 10 lbs and my leg’s feel like Jello. Have seen my Dr. and he ordered Blood tests, after 4 day’s I received a phone call saying he wanted to raise my thyroid to 88mcg which I won’t do unless he is aware of my mistakenly not taking them. Phone call today when he opens and will leave a comment on my progress. Mary in Florida
tschaller70
4 Oct 2016
I intend to stop mine. I was dx in 9/2011 with hypothyroidism and my TSH was 7.75. Since being on the medication I have gained 30 lbs that regardless of diet and exercise I cannot shake. I noticed have severe anxiety during these years and bloating in hands and face. The nurse practitioner I was treating with realized I have a resting heart rate of 130 and had my thyroid tested. I have never needed to be on a dose higher than 88.8 mcg. I missed taking the med for 3 days last week due to a move. I was less bloated, more energy and went out when I normally would shy from it. I will follow with my doctor but feel there are other safer ways to manage the condition than a medication with all these side effects. I was never more than 125 all my life, so being 170 for the last 3 years really has taken it's toll.
Whisper85
12 Oct 2016
Has is caused you any issue's lowering or stopping it? Hope all is good.
tschaller70
12 Oct 2016
@whisper85 I am feeling really good. Sleep better, less brain fog, no afternoon crash of energy, and I notice I nap less.
Whisper85
13 Oct 2016
Thank you for responding! Why do so many say it is so dangerous to stop?
My TSH is reslly low. 0.10 have all hyperthyroid issues. Had most all my thyroid removed in 1997... no issues, took a low dose of Levothyroxine T4 for all these years. Then I stopped smoking 2014... raised Thyroid a small amount, as my TSH and T3 and T4 were off. Now the last starting this Late Spring and Summer I have felt pretty hyper..not a good thing... my ENT ran my last test in August 2016 where my TSH was low above., he no longer is practicing either. Been feeling awful this last month, so ill I could not get up much at all. Diarrhea, vomiting, truly not hungry at all, awful taste acidity. Lost 10 pounds swiftly. Not much sleep either extremely wired, hyper vigilant, then I get groggy for a short time at night. Scary to be honest!
Ask my PPO for test , he said I am retiring. Hung up on me early today. I think he dislikes us all and he is quite ready to retire. My PPO said call your Rheumatologist, called him he said he cannot do any test. I have decided to not take my Thyroid meds for a few days. I am sick of feeling so awful... Get a TSH and other levels checked Even if I have to pay for them. Lower my dose Thyroid to half of what I was taking until I know my levels. Sorry did not mean to write so much. Yes , my heartrate is to high also. I never weighted more then 110 to 115... was up to 165, now I am down to 150 or less. I will never understand the weight gain as I never eat much and eat Gluten free, low amount of meat, when I do eat. I pray to God it is not something else going on. I know I need to find another Doc to go too, that I can rely on and trust.
Chelle50
25 Oct 2016
I've been taking T3 and Levothyroxine for three years. I just had a full hysterectomy on 8/1/16. In September I noticed changes to my urine after I took the meds. Three weeks ago I threw up my meds in the morning, about 5 minutes after taking them. I've not been on them since and will see another doctor on 2 weeks. I feel less tired and have more energy off the meds. People are freaking out that I stopped taking but why would I take them after throwing them up? We'll see what the new doctor has to say.
Jidda
29 Oct 2016
I have the same problem. Is there herbal remedies or all natural ?
boys2men
21 Nov 2016
I have the same symptoms as yourself. I've never been overweight and now im about 25 lbs over. I have been struggling with not sleeping, no energy, weight gain as well. This has given me encouragement to find out the truth about this medicine. I read an article recently that this medication will MAKE you gain weight.
cartama
30 Nov 2016
I 75mghave taken thyroxine75mg since 1994. I am now 72 years of age and sometimes I wonder if it is still necessary to take it. Last month I couldnt get to the Farmacia to refill my prescription so did not take it for 3 days. This was a first time to miss it. I felt tremendous, full of energy, happy and so alert. This made me rethink my situation. Did I really need the thyroxine. I have continued to take it as prescribed but each time I feel irritable, or tired and cant be bothered, it does make me think about it. Does anybody think it could be decreased slowly and in future not be needed. I was given it initially because I lost my hair and nobody could tell me why. My hair has never grown back.
Kcoleman16
16 Jan 2017
I was sick with a cold right before Thanksgiving. I didn't have a appetite so I didn't eat for a couple days and no meds except cold medicine. I have yet to take another pill since then and feel the same. I haven't told my doctor but I have no thyroid at all. There are other ways to feel better.
Inactive
12 April 2017
how long have u been off this? I quit Apr 5, 2017 but nervous doing so as It says you can lapse into a coma eventually but dont know how long that would be. Do you? I have same syptoms being on the drug, as if you were first being diagnosed and probably had it long b4 the dr told me i had to start taking it. So im wondering who is right and if im wrong going off of it...
simplymary
25 April 2017
I had a full thyroidectomy operation last December and after that I'm on a maintenance drug called levothyroxine as he doc said i dont have thyroid hormones anymore the dosage was only 50 mcg after 2 months of taking, i had a TSH function test and the result was very high 323 so they increased the dosage to 100 mcg , two weeks from now i will have another TSH function test , now my problem is this im gaining weights and im experiencing body pain... i want to stop taking my maintenance drug, is it possible?
Deborah Wimberley
25 April 2017
Hi: I too have been Dx'd with hypothyroidism, was put on thyroid meds., been on since March 2015, saw an Endocrinologist, who told me I didn't need to be on this med??? went back to my PCP who then said well you can stay on or go off. I never heard of such a thing, but I too have had negative side effects & gained a lot of weight in spite of a healthy diet and moderate exercise, I've since stopped for 1 week now was taking 56 mcg. daily. I'm also noticing less bloating and feel a bit better than when on the meds. When I told the PCP my concerns about the weight gain, all he said was well it's not suppose to cause weight gain. I'm now looking for a new Dr. and hopefully will be able to stay off this drug. any advice.
Deborah Wimberley
25 April 2017
Hi: I too have been Dx'd with hypothyroidism, was put on thyroid meds., been on since March 2015, saw an Endocrinologist, who told me I didn't need to be on this med??? went back to my PCP who then said well you can stay on or go off. I never heard of such a thing, but I too have had negative side effects & gained a lot of weight in spite of a healthy diet and moderate exercise, I've since stopped for 1 week now was taking 56 mcg. daily. I'm also noticing less bloating and feel a bit better than when on the meds. When I told the PCP my concerns about the weight gain, all he said was well it's not suppose to cause weight gain. I'm now looking for a new Dr. and hopefully will be able to stay off this drug. any advice.
cherylinelkford
25 Aug 2017
I have been on Synthroid for 1 year and gained 15 pounds and I am always constipated. I do fitness everyday and follow a vegan diet 98% of the time. I eat tons of veggies and fruits. The fact is I have had eating disorders all of my adult life (now 49). Even though I do not participate in those behaviors now, I still have the eating disorder "brain". It is just the way I think. The weight gain and constipation are very very hard to deal with. This adds depression into the list and I don't know "who I am" anymore. I used to be fit and outgoing and now I am a blob.
sweetthatishow1
16 Oct 2017
So did you stay off the medicine and are you still having good luck with that or what because I want to stop mine all together and I don't want to go to the doctors, I'm also on 88 MCG for the past 7 years.. never been thin since I started taking it always take naps ,always get heart palpitations
sweetthatishow1
16 Oct 2017
Please get back to me ... i want to feel good again .. i dont trust the doc
lhend2018
21 March 2018
What did you end up doing? My NP took me off my thyroid meds today due to problems with it I was on the lowest dose. I've experienced fatigue, hair loss, irritability and more. I too have hypothyroidism. Thanks
TINTHOMP
13 Oct 2018
I have been on 25mcg and feel i really dont even need it. I was put on it 15 years ago and was barely on the border to even start taking it. I want to stop it. Im just afraid by reading all the comments it would cause me more harm than good.
Holls3
14 Nov 2018
How is it going for you? I quit mine 3 weeks ago with no complications.
Dragon78
16 Dec 2018
Crazy stuff, sorry. I have stopped for 9 months and went from 218lbs to 151.7 for an average running loss of... wait for it... 65.372 lbs. I have very lean hard muscles and my E.D. is long gone. Was not hard to get off since I weaned off over 6months. Oh, and now my testosterone levels are normal. Remember, big pharma is paying billions if $$ in fines weakly in order to still sell rat poison for blood thinning, really? Need thin blood? Drink a lot of water. Our bodies work awesome. Let it work and stop the brain fog drug control puts us in.
Mexican2007
27 Sep 2016
I am a hypothyroidism cancer remission. I recently lost insurance and no doctors due to moving. No Doctor will refill my medication and i have no thyroid at all. I have had mood swings, hard staying awake, feeling cold, nausea and headaches every night. I was wondering what signs should I go to the hospital??
llm2000
13 Dec 2016
I don't know if you'll get this and I don't know where you live but if it is in the US, go to the county building in your city and ask for medical help. If you can't get there, either find someone to take you or go to someone at a church and ask for help. Most clinics have resources to help you back to a "healthier" you. Please ask for help. Your symptoms warrant a visit to a hospital if no one is taking care of you.
Related topics
depression, levothyroxine, medicine, thyroid
Further information
- Levothyroxine uses and safety info
- Levothyroxine prescribing info & package insert (for Health Professionals)
- Side effects of Levothyroxine (detailed)
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