Thyroid Disorders Community
What happens if I quit taking levothyroxine?
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Avatar_m_tn
Please post your thyroid test results and reference ranges shown on the lab report.  What test made your doctor decide you were still hyper?  What symptoms are you having that prompted you to say you were not feeling well?  What dosage of Levo were you taking?
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Avatar_m_tn
To speak from experience it is important for you to continue taking your thyroid medicine. I had stop taking my medicine for a few months becaue I couldn't tolerate my hair loss. I just want to say please don't stop taking your medicine but if you feel you may want to discuss it with your doctor. Due to that wrong decision my dosage increased from 25mcg to 50mcg. Since I have stoppe my hot flashes resumed, more fatigue, and more forgetful. It is important to manage your thyroid levels because it can lead to other health issue that may cause more health issues. Our thyroid levels can affect of weight loss/gain, cause dementia, high cholesterol which effects our heart, hot flashes, anemia, fatigue, depression, our bones, skin, taste, smell, and etc but the severe cases do lead to a coma/death. I am experiencing all those symptoms except of course the severe case so to sum it all up in a nutshell..continue to take your thyroid medicine & if you have any concerns discuss them with your doctor.
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Avatar_f_tn
I'm on levothyroxine that I take daily, I haven't taken it for about three months now and I've got a lump underneath my ear that's very sore and irritating, could this be my glands due to not taking thyroid?
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Avatar_m_tn
In the uk if you have a underactive thyroid you do not have to pay for any med including levothroxin.
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Avatar_m_tn
I'm 37 yrs old and had a total thyroidectomy ten years ago. two years after the  surgery, i was put on 100mcg levothyroxine and had it adjusted to 150mcg. a few months later, it was taken back to 100mcg. i have not done any lab tests for over 1 yr now though still continues with the same dosage. currently, i'm having a severe toothache and my legs are still swollen. since i can nolonger afford to see a doctor, could there be a relationship btwn the levothyroxine and the toothache?
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Avatar_f_tn
does anyone know all of a vitamin to replace my synthroid 112 I am having an issue with my health insurance not paying my blood work and I am unable to see my doctor for this reason.
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Avatar_f_tn
I had thyroid cancer and had to have my thyroid removed two years ago.  I am on meds now, but want to stop taking them on go on something that naturally restores my TSH levels.  I recently became unemployed and now I can't afford my medication, so I am very worrried after reading all of these comments.  I am not trying to refrain to taking the medication, but I am no longer able to afford it.
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Avatar_f_tn
If you're hypo, and especially after thyroid cancer, thyroid meds are not an option, they are a must.  Ask your doctor about generics.  Also, ask him about prescribing twice the dosage you need and instructing you to take half per day.  I recently bought 100 tablets, which are twice my dosage and will last me 200 days (that's over 6 months) for $30.  That's less than $5 per month.  You can't afford not to do it.

Nothing naturally restores TSH levels and anything that claims to would probably cost you a lot more than $5 per month.
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Avatar_f_tn
I was at a nineteen but now I am at over five hundred and have every bad symptom possible, super sick and feel like I'm slowly dying I am so bad at taking my pills and was on 1.25 levothyroxine but missed tons of days plus I feel way worse when I take them, so I never know what to do as I have 4 Lil kids and hate being sick but now I'm way sick and hate this feeling and my doctor said this is so dangerous for my levels to be so high its scary! But does anyone else feel sick off their pills?
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Avatar_f_tn
A little over a year ago, I was diagnosed with hypothyroidism caused by Hashimoto's disease, and goiter. I had to emergency surgery due to obstruction with breathing, eating, and swallowing. My surgery went well, I guess, except having Captain Hook who inserting the breathing tube down my throat and  tearing my throat extremely bad. I only have a very small portion of my thyroid left and currently taking 88 levothyroxine.
My situation is a little unique because at the same time I was diagnosed with hypothyroidism, I was diagnosed with having severe CMT disease, which is a nerve atrophy, and is a muscular dystrophy disease.
I am curious what happens to the human body and how long death will occur. I am tired of feeling a burden to my family and society. I battle depression on a daily basis, due to my diagnoses and the severity of my disability, embarrassment to my family, which is domestic abusive, and feeling no way out, except death. Every dream and set goal have been literally flushed down the toilet. I fight everyday and feel it is better that I go sooner than cause more medical expenses for my family. I have asked my doctors how long without my meds, they say about one week, which I don't believe at all. So how long can one go without medication and how long does it take for the human body to shut down? There are so many misleading posts, I guess it depends on each individual. I rather die a quicker death than a long painful one, either way I am already dead in spirit.  
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649848_tn?1357751184
Death is a permanent solution to what is, often, a temporary situation, even when we suffer from debilitating conditions.  Depression can convince us that things are worse than they really are.

Just to make sure we're talking about the same thing, is your CMT, Charcot-Marie-Tooth disease or is there another disease called CMT?



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Avatar_n_tn
my story is much the same as yours my anxiety woz so bad i stopped living,but now i take pregablin within 3 days my anxiety stopped and within 2 weeks my life changed,i found a hobby and a job and my 2yr old daughter is happier too,i take 50 mcgs of levothyroxine and i do feel weirded out by an animal hormone and have been thinking of coming off it coz ive put on weight and just dont feel like me,i seem to be more boistrous which i really dont like coz before i had no aggression in me at all sometimes i feel like im on steroids?but also i dont want to get ill and before id be bedridden with pneumonia wot 5 times per year and actually i cud lay and switch off for days it woz like slipping into a coma i suppose it woz really?im just currently reading up in forums if coming off it is an option coz i dont like the way i have to take a pill fpr nausea and a pill for migraines and now anxiety and the list goes on.a friend of mine came off it now for 8 months,she says physically she feels so much better and lost a lot of weight but mentally shes very confused and nervous?wot i do hate about this disease is family and friends thinks its more hypochondria than an illness that really upsets me coz ive never been ill b4 i woz 40yrs old and now always ill if anything i keep alot of my ills back coz i dont want to be called a hypochondriach,a very confused hypothyroid sufferer?
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Avatar_n_tn
you are exempt from having to pay for your meds for life now you have hypothyroidism,my dr gave me an exempt form,if you really desperate i have a backlogue of them i may as well give them to you they will only get binned they are 25mcgs and 50mcgs ket me know i send?they all in boxes of course
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Avatar_n_tn
hey guess what i discovered that too you would never guess in the U.K. we only get given thyroxine and in America its thyroxine and t4 or t3 coz apparently ive read in books that most people need the t4 to help the thyroxine work?which is awful coz ive been on just thyroxine for 2yrs and have all yhem symptons you mentioned and also apparently to another site really no point taking thyroxine unless on t4?so im confused why drs havnt given me this combination?i can only presume its because it costs more so i just ordered some from my chemist,and will treat myself coz that t4 and t3 is really important good luck
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Avatar_n_tn
hey guess what i discovered that too you would never guess in the U.K. we only get given thyroxine and in America its thyroxine and t4 or t3 coz apparently ive read in books that most people need the t4 to help the thyroxine work?which is awful coz ive been on just thyroxine for 2yrs and have all yhem symptons you mentioned and also apparently to another site really no point taking thyroxine unless on t4?so im confused why drs havnt given me this combination?i can only presume its because it costs more so i just ordered some from my chemist,and will treat myself coz that t4 and t3 is really important good luck
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Avatar_m_tn
The thyroxine  that you mention is the same thing as T4, just another name.  So, the idea that you need to take T4 to help the thyroxine, is false.  

If you are taking thyroxine and still have symptoms, then I would suggest that it is due to either your dosage is too low, or that your body is not converting the T4 to T3 adequately and you need to add a source of T3 to bring up your Free T3 level as necessary to relieve symptoms.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

I fully realize that in the UK it is hard to find a doctor that will treat a hypo patient clinically by testing for Free T3 and Free T4 and then adjusting those levels as necessary to relieve symptoms, without being constrained by TSH levels.  But that is what is usually needed.  So if you cannot find such a doctor within the NHS system, then you may have to consider going private.  If you should decide to look for a good thyroid doctor, if you will give us your location, I have knowledge of a few doctors, and I could see if any are in your area.  
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Avatar_f_tn
I'm scared because I'm on it and if I don't get a full schedule for college then I won't have medical insurance and therefore won't be able to afford it so I won't be able to take the medicine. Should I talk to my counselor and see if it counts as special needs or no? I want to be able to take classes so that I don't get sick or die. Dying is my worst fear.
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Avatar_f_tn
What should I do? Please help
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5987560_tn?1377890181
I stopped taking my meds for a year and I went into a Myxedema Coma.
I  put on 60lbs of water in less then a week. I felt better and did not have a job at the time and had already had a cancerous Goiter removed.
When I walked or bent my arm it was like wringing out a wash cloth and water would pour from my body. I was in the hospital for 18 day's All of my organs were shutting down and the idiot Dr. I had was pumping me with more IV fluids. I almost died. When they released me and I was not well then I had a headache for 3 months. Went back to the E.R 5 times and developed shingles. Do not stop taking your meds. No DR .ever  sat down with  me and told me about this danger. I did not know just how much the thyroid controlled so much of your body and organs until it almost took my life. I am better today by the grace of God. But please stay on your meds!
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Avatar_m_tn
Thanks for sharing that story with us.  I couldn't help but wonder how you are doing now?  Do you still have lingering hypo symptoms.  What do your thyroid test results show, compared to their reference ranges?
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Avatar_m_tn
My daughter will not take her tablets I bet it's been about 4mounth now what will happen
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Avatar_m_tn
My daughter will not take her tablets its been about 4month she seems ok some times she seems for get but her helth seems ok how long can she go on be 4 she needs them
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6057340_tn?1378767506
i have thyroid glans (glands) and wondering what will happen if u don't get it takeing care of
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6057340_tn?1378767506
needing help on this thyroid stuff
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Avatar_m_tn
We'd like to help, but don't understand your question.  Please give us more info to work with.   Test results, with reference ranges.  Diagnosis.  Symptoms.  Medications and dosages.
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Avatar_f_tn
Hi guys. What would hypothetically happen if a woman, mid-60's, had her thyroid removed a year ago and is refusing to regularly take a synthyroid medication? Would this cause bouts of mania and erratic behaviour? Asking on behalf of a friend's mum. Thank you.
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Avatar_m_tn
Definitely.  If she has no thyroid gland, she has no serum thyroid hormone.  She should be made aware of what she is doing to herself.  It is a terrible situation for which there is no possible excuse for not taking thyroid meds regularly.  If she has any doubt, have her look at this link.  It lists 26 typical hypothyroid  symptoms, and there are actually many more.  

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html
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Avatar_f_tn
There is something called Myxedema Psychosis. Hypothyroidism in general can cause mood swings, so it is possible this is the cause. In any case, something bad is bound to happen to her if she is not taking her meds. You may want to look at the post 7 above yours, from Summerwind63. She experienced a myxedema coma after stopping her thyroid medicine. Without a thyroid and any supplemental hormone replacement (Synthroid, for example), one can die. The body cannot function without a thyroid. It is the master control gland for all of our body's functions.
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Avatar_f_tn
Thanks in part to Obama's government reduced work hours I have been out of medication for over a month.  I had my thyroid destroyed over 8 years ago.  I can not sleep, or control irritability.  Other symptoms that are less troublesome include dizziness, extremely fast heart rate, and constipation.  We can't afford synthroid or anything else as we are older and on a limited income.  I have been accepted for medicare but can't get any prescription's until I receive a card so that Blue Cross will cover medications.  We filed in August however I still haven't  gotten the promised card.  Anything natural and free out there?  I can only hope that Obama care NEVER is implemented..
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Avatar_f_tn
Thyroid medicine is very cheap. Even without prescription coverage through health insurance, generics are less than $10/month. Please, please, please look into this! You are able to buy out of pocket for this small amount with a prescription. It is worth it to see a doctor for a primary care checkup (that will be free, under the law) to get your script filled if you don't have a prescription at the moment.
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Avatar_f_tn
Not sure where u live but I only pay less than $15 a month at Walgreens!!
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Avatar_f_tn
oh wow! nice to know someone else out there with congenital athyroidism. hard to find and we are a rare bunch. I unfortunately ran out of my medicine and have no insurance and still waiting to get an appt with a doctor to get more.. so aggravating. i'm so afraid of getting a coma too.. it *****! i'm sorry you went through that. yikes!
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Avatar_m_tn
Dear Ollie, I had the same symptoms as you. I have Hashimotos. I got rid of most of the symptoms by going strictly on an anti-candida diet for three months, and have remained on a modified version for two years.  Also, 90% of people with Hashimoto's are gluten intolerant.  Gluten gives you night sweats.  You need to increase your calcium and zinc to stop the cramps. Get the book Why Do I Still Have Thyroid Symptoms by Datis Kharrazian.  You can do a lot through diet.
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Avatar_m_tn
PS. I am still on 50 CC of Levothyroxine though daily.  I came on here because I ran out of pills for the last three days. I can feel my brain slowing down as I write!  But regarding all the extra nasty symptoms, you can get rid of much of them. Also, regular sleep is important.
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Avatar_n_tn
I know exactly how you feel. I have not take any meds for a week now but do not feel any different. My thyroid was removed a year ago along with two parathyroids  I just wish it would hurry up and finish me off.
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Avatar_f_tn
I had the same thing, pain in my hip then knee which I read is a rare side affect to Levothyroxine.  My doctor wanted to send me to an orthopaedic doctor, but I started having more side affects (excruciating headache on the top of my head, insomnia, muscle aches to name a few).  My doc. told me to discontinue the medicine for a month and get my thyroid level tested then to see where we go from here.  Levothyroxine certainly didn't agree with me, I was on the 25 mcg. too.  Good luck!
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Avatar_m_tn
Some of the symptoms you mention could well be related to low levels of serum thyroid hormone.  The 25 mcg of Levo is a small starter dose, and is unlikely to have affected your serum levels very much.  If you will please post your thyroid related test results and reference ranges shown on the lab report, we can try to assess further.  
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Avatar_m_tn
Long story.  I have Hypothyroidism for 25+ years-self diagnosed.  The Doctors never seem to get meds right.  About 1 1/2 months ago I ran out of prescription-and my Doctor had quit his practice (or got sued), oh and My insurance from work stopped (caused by Obamacare restructuring)
So I have No Dr.
No Meds and My work is not sure when my Ins will start up again, a couple days to a few weeks.  I have been off Levo 200 mcg for over a month, gained 35 pounds, starting to have hair loss, memory is foggy, High Blood pressure 145/100  etc...  and cannot get new meds, because no Dr., because No Ins Yet......ahhhh, what am I supposed to do... and how bad am I damaging my Body...
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Avatar_m_tn
"Because T4 regulates such essential functions as heart rate, digestion, physical growth, and mental development, an insufficient supply of this hormone can slow life-sustaining processes, damage organs and tissues in every part of the body, and lead to life-threatening complications."  So you can see that it is very important for your health to get your insurance straightened out and see a doctor and get a new prescription.

I would go ahead and make an appointment with a doctor rather than wait until after you receive notification about insurance.   Even if you have to arrange to pay out of pocket for the doctor, don't delay.
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Avatar_m_tn
I am not sure how many people will see this, but here is my situation. I was diagnosed with Grave's Disease when I was 17. I underwent radioactive iodine treatment, and for the next few months my doctors thought things were going to be ok. Well, the bottom fell out. I started gaining weight, having all kinds of physical, cardiac, and emotional symptoms when they recalculated, and found out they overshot the dose of radioactive iodine by about 10,000 miles. If my parents had obtained a good lawyer, I probably would be set for life. Needless to say, what they finally figured out (duh) was that I had become severely hypothyroid.
Fast forward 30 some years. I have been on slowly increasing doses of levothyroxine. (now up to 300mcg/day - yes, my pills are special order, or I am given 2-150mcg ones.) I was doing fine; until certain aspects of my financial life fell apart. I have no Dr., am out of meds. have no transportation to get to public clinics, and very little money. I am also living in a new area where I hardly know anyone. The local pharmacy gave me a few days med, but now I have been out for about 10 days and am becoming severly symptomatic. What the hell do I do in the US? Die? Is there any way to buy online? I know what the hell I need, and it's not freaking crack, heroine, or meth. What do I do? Anyone able to help? I'm going for a longshot here. If this site accepts it, my email is ***@****. You may save a life.
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649848_tn?1357751184
What happened to you when you had the RAI, is, exactly, what they expected to have happen - your thyroid was "killed" off so it stopped producing thyroid hormones.  There would have been no grounds for a lawsuit - that's simply what RAI does - sounds like the biggest issue is that no one fully explained that to you or your parents.

Levothyroxine is manufactured in 300 mcg dosages, so while your pharmacy might not, routinely, carry that dosage on a regular basis, it shouldn't have to be "special ordered".  They should be able to get it from their distributor with no trouble.  

As far as your current situation of being out of med and no transportation, you should look into public transportation, such a city bus.  Many communities have other types of transportation, as well, for disabled or elderly to get to doctors, hospitals, etc.  The one in my county is called (County) Transit... you call them and they come right to your door and pick you up and return you when the appointment is done.  This is strictly for elderly and/or disabled.  The public bus has bus routes all over and anyone can ride those for a nominal fee. Taxis are also available, but those are mores expensive, though often not prohibitive - you might want to call and inquire at to the cost.

If those aren't options, call one of your local churches or other charities.  Many of those have people who volunteer to take people to their doctors for appointments or can make suggestions suitable for your community.  

There is no way to buy thyroid hormones, legally, online and we are well aware that someone who needs thyroid hormones does not need crack or cocaine.  As you can see, the site does not accept e-mail addresses.

If none of the suggestions I've made here are acceptable to you, call an ambulance and have them take you to the nearest ER - there, you will find a doctor, they will do blood work and will most likely prescribe you medication to get by for a while until you can make other arrangements.  

When you get blood work done, ask them to be sure to test both Free T3 and Free T4, not just the standard TSH.  Since you are on such a high dose of levothyroxine, I'd take a stab in the dark and wonder if your might not be converting the storage hormone, Free T4, into the active, Free T3, which is the hormone used by individual cells.
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1756321_tn?1377771734
I have both cellular and thyroid gland issues and I had to stop medication as medication had built up and I was hyperthyroid. A day or two later I was suffering badly with hypothyroid symptoms and gasping for air. Severe bradypnea is my worst symptom of hypothyroidism.  Here in Australia thyroid medication can only given with a doctor's prescription. I think in the US you can buy online without a prescription though.
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649848_tn?1357751184
We can not buy, thyroid hormones, legally, in the U.S online, without a prescription.
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1756321_tn?1377771734
Ahhh I see. I did find an article entitled "Why It's Legal To Buy Thyroid-S" though stating this: "NDT is a non-prescription dietary supplement in Thailand (and not a prescription drug), so we can legally ship from Thailand with no prescription."
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649848_tn?1357751184
Thyroid S is supposedly a T3/T4 combo, much like Armour ... It is sold as a dietary supplement, rather than a drug.  Personally, I'd be very scared of taking it or recommending it to anyone, because you have no idea what's really in it or the amounts of actual thyroid hormones.  I put it in the same category as the "cytomel" purchased from body building sites -- dangerous!!!
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Avatar_m_tn
Because of being on a low dose of levothryoxine for 8 yrs I now have osteoporosis which after my last bone density test showed I did some research only to find out the drug caused this and I am furious the dr did not say anything about this side affect. So what bone issues are you saying that it causes when you do not take the med when needed? I am in perfect health otherwise and have been weight training for yrs and eating right my whole life. I am now thinking about going off the meds simply because when they put me on them I had no symptoms what so ever of being Hypothyroidism. Im very slim with energy to burn...So everything Im hearing is just opposite of me and the only reason they put me on it was a blood test not any symptoms. Now Im really confused
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