What happens if I quit taking levothyroxine?

I was diagnosed with Graves at 27. In a years time I had a complete thyroidectamy(?). I have been taking levothyroxine ever since. What would happen to me if I just quit taking the medicine all together? I hate taking a pill everyday and sometimes to get refills for up to a week. Just curious......

[KelDC]

It's very dangerous to quit taking your thyroid medication. It is replacing what your thyroid used to do, and it is necessary.

[jrcaleb]

When the levels of thyroid hormones become very low, the symptoms get worse and can result in a serious condition called myxedema coma. Myxedema coma is a rare but life-threatening condition. People with hypothyroidism who are in or near a coma should be taken to an emergency department immediately.

Myxedema Coma Causes
If you have hypothyroidism, then any of the following can contribute to myxedema coma:

Infections, especially lung and urine infections
Heart failure
Stroke
Trauma
Surgery
Drugs, such as phenothiazines, amiodarone, lithium, and tranquilizers, and prolonged iodide use
Not taking prescribed thyroid medications

[stella5349]

Simply - your body eventually will shut down.

This is fatal and will cause death if your medication is not taken

[Liz94]

Your TSH will go sky high and you will feel like dying. Trust me, I didn't take any meds for 6 weeks after total thyroidectomy (as many people here have experienced) and my level got so high I could not focus my eyes. It's about as close as you can get to actually WANTING to die because you just want relief for how bad you actually feel. My aunt had a thyroidectomy when she was 11 years old and a few years ago, when she was in her 40's, she decided she was sick of taking a pill everyday and wanted to see what would happen. About 2 months along with no meds she was driving down the road and had to pull over and for about 30 minutes she did not know who she was or where she was going. They took her to the hospital and she was a mess. SO, don't stop taking your pills. It may be a pain but it could mean your life.

[designsbymikayla]

To stop taking your thyroid hormone medication is very dangerous.  The chemicals in the medication is used to help the pituitary and other parts of the endocrine system produce hormones without the thyroid.  Even though you don't have yor thyroid anymore, you still need the hormones to be able to have simple things such as energy, to grow(for children), and feel emotions.  So, don't stop taking the pills.

[Venora Moonwind]

Everyone is right . No pill = death. Its not a big deal to take a little pill everyday so you can have a good quality of life and be healthy. Would you quit taking your insulin if you were diabetic? Its like that So take your pill and dont worry about it and get on with living. there are a lot worse things that could be wrong with you.
Love Venora

[MKlacza]

Not trying to be harsh, but to say you are just tired of taking a pill sounds a bit ridiculous to me. Taking my pill is like taking a little bit of heaven everyday! I know that this pill is going to do good things for me in time to come. Please, take the pill unless you really want problems. You think taking one pill is a pain in the butt?? Imagine not taking it and then finding yourself in the ER and going home to even more meds because you didnt want to take a pill.. like meds for your heart etc.. just doesnt make sense! :)

[cotton920]

i was prescribed 25mcg of thyroxine. i think it is giving me pain in my upper and lower
legs?  should i quit it for a week and see how i feel?

[kittyhead]

If I don't take my Levoxyl for 2 or more days I start to feel tired and run-down. If you are sick of taking one pill each day, think of this: I take 12.

[QUEENIE9950]

I TOO HAVE TIMES I HAVE QUIT TAKING MY PILLS, IT SEEMS I BEGIN TO FEEL BETTER!!! IT SEEMS TO BE GIVING ME DEPRESSION TOO, YET EVERYONE AND MY DOCTOR IS TELLING ME IT DANGEROUS  BUT WHY DO I FEEL BETTER WHEN I STOP? I'VE BEEN ON 112 MIL  DOWN TO 50  CAN;T SEEM TO GET IT REGULATED.....

[Chisvausa]

Hey cotton, did you ever find out about that pain in your chest? I still have my thyroid but the Dr said it's under active. Now I'm taking 50mcg of levothyroxine and i'm having panic attacks, feeling nervous, losing weight and having trouble sleeping. I heard that sometimes the thyroid can just stat working again. I'm worried that now i'm hyper instead of hypo. I just had my blood tested this morning. Havnt had it checked in about 5 months before that. Dr says it takes 2 days for results.

[Chisvausa]

I still have my thyroid but the Dr said it's under active. Now I'm taking 50mcg of levothyroxine and i'm having panic attacks, feeling nervous, losing weight and having trouble sleeping. I heard that sometimes the thyroid can just stat working again. I'm worried that now i'm hyper instead of hypo. I just had my blood tested this morning. Havnt had it checked in about 5 months before that. Dr says it takes 2 days for results.

[shagg]

i agree it is dangerous to stop taking your meds.
but, i was hypothyroid for many years the doctor had assumed, and i didn't die.....i don't think you just up and die....
assuming your thyroid doesn't produce any t-4 or t-3 or whatever then yeah dying after going into a coma or having heart implications is very possible.
many people's thryoid is still producing , just not enough to be within the normal range............so i think the more accurate answer in this case is that your health would drastically decline in a matter of weeks or months and probably stabilize to some sub-normal health zone.......think slow death........
i have to take 175 levothyroxine everyday. i know what i felt like years before i was diagnosed, i had anxiety attacks from hell, not all to be attributed to the thyroid thing, but it almost surely complicated matters.
that is all i have to say

thankyou

[Barb135]

This is a very old post; however, the original poster had a TT, which means she had no thyroid to produce any hormone at all.  In her case, as in the case of one whose thyroid has completely died off, not taking the pill would quite likely cause one to die.  

There are a lot of us who most likely were hypo for a long time before diagnosis and we didn't die, but you never know what's going to happen.  I believe that I swung between hyper and hypo for at least 20 yrs before my thyroid stopped working and I became totally hypo.  At the time of my diagnosis, a holter monitor showed that my heart rate was dropping as low as the low to mid 30's when I slept; even when I was up and about, my heart rate rarely got much over 50 bpm.  If my condition had gone undiagnosed much longer, I might easily have died.  

Taking that pill (or in my case - 2 pills) every day is a small price to pay.  

[chente_0419]

I see no difference when I dnt take my pill fr a couple of days, I either forget or I just dnt take them... When I do take them I try to take them in the morning but,(btw,I'm 16), I have alt of other important things to do in tha mrning that I just forget somtimes but I'm still slightly overweight and seem to be losing hair I dnt know y tho... And I dnt like that...but just nt wanting to tale it,well that's just laziness...
Peese out take ur pillz!!

[Barb135]

If you would take your medication daily like you are supposed to, you might be better able to lose weight because your metabolism would be better; plus your hair would not fall out so bad.  By not taking your medication regularly, you are not helping yourself to get well.

[steph25y]

i have had my whole thyroid removed due to cancer im 26 this was last year...i was left for 2 weeks until i got my first tablet as the hospital said i do not need it lol!!!(stupid)...them 2 weeks was hell i could not get up outta bed,could not work..i felt awful,so im very aware tat if you do not take ur tablets ur life is never going to be the same or even end ur life .... sooo please take ya pills peeps,, its not alot to ask 2-3 tablets a day is nothing. steph

[miss_d1808]

I'm 23 and was born without a thyroid gland. My dosage of levothyroxine has been increasing gradually throughout my lifetime. I'm now on 200mcg.

However, not realising the importance of taking my medication daily, I skipped days of not taking them and I think it lasted for 2 weeks during my A-Levels at the age of 17 before I went into a myxedema coma during the night. My body went into complete shock and an uncontrollable shake; it felt like I was in an ice box. I tried to call out for my parents but nothing would come out of my mouth. I had no energy left in me. I tried to reach for my mobile phone to call my mum or dad in the other room, but I couldnt even lift my arms out from under the duvet as I felt like ice. I was so scared - I'm not sure how long this lasted, but it felt like an eternity with trying to struggle to move or get out of the bed. I thought I was going to die as my body just shook uncontrollably. Eventually, thinking I needed help asap, I somehow managed to throw myself out of the bed with the duvet around me and with hardly any energy, I crawled into my parents room. After asking me the last time I took my medication, they gave it to me straight away, as well as a hot water bottle and my body started to calm down. They told me I was ice cold, how my lips were blue and my face was white. After that, my immune system must have totally broken down as I had a kidney, urine and bladder infection and was out of action for a long time. It took my body months to recover, and my A-Levels results suffered terribly as I couldn't finish them.

So, taking a little pill every day is not THAT hard, as I well know. You take them for a reason, not just for fun. They're a necessary way of life.

[airam_17]

What if you have an underactive thyroid and you are suppost to be taking 200mg of levothyroxine each day when your 17 and havnt had it for 2 months??
what happens??

[Barb135]

You would most likely be very sick by now!!  Why aren't you taking the med?  It is necessary for your body to function properly.  

[airam_17]

It is a long story but I cant take them when im stressed but i seem to be fine anyway im just tiered all the time so i dont think it makes much diffrence anyway

[BabersMcLeod]

I've taken Levothroxine (levothyroxine) since I was 18. I discovered I had it when I dragged through the day all the time and gained a bunch of weight...Many doctors told me to stop partying and get a good nights rest, and to not eat an unhealthy diet...by the way I was only like 125-130 pounds when they told me that. The third doctor asked me if I'd ever had my thyroid checked and sure enough my levels were REALLY bad. I've had insurance since I was 18 but now at 22 I have a job without insurance and have been rationing my last week of pills from my last refill for two weeks now. I'm not sure how to get more without paying more than I can afford...what do I do???

[airam_17]

if you live in the UK you can get a medicial exsemtry card and all your proscripitions will be free i have one, theyl give it to you cause its a life long condition.  You should ask your G.P about it.

[alyygirl122]

omg! you guys are so naive i got diagnosed from a dumb *** doctor who said i had a thyroid problem when i don't and causes serious problems with my body i couldn't even walk from levoxyl. levoxyl will ruin you it will cause your eyes to bulge out of your head its a very unneeded medication every doctor uses ******* thyroid as an excuse
do not take an prescription medication for that your thyroid controls everything in your body. I'm skinnier off that **** then i was on it goes to show all bull crap take natural stuff

[HessyKat]

I cant believe people actually think they dont need their thyroid medication especially after they have had the gland removed. Just google what all the thyroid does for you body. Please people take your meds. It scares me to death to think about not taking mine every morning because I have had my thyroid removed.

[krhead]

Please remember that your body is not the same as others. Do not tell people they are naive when no one but the person themselves knows what is going on with their body. There could be so much more, or less, than just thyroid issues. This site it help people, not demean them.

[krhead]

Please remember that your body is not the same as others. Do not tell people they are naive when no one but the person themselves knows what is going on with their body. There could be so much more, or less, than just thyroid issues. This site it help people, not demean them.

[Depressed1956]

No at least I know how to end my miserable life with little effort. I am tired of all the BS and stress I have been dealing with!

[grantj]

I am so sorry to hear you/anyone say this; please seek the help you need to feel better physically and emotionally; life is too short and has too many wonderful things to offer.  You deserve much better quality of life than you obviously have and if it means seeking help at all cost, please do so.  There are so many people on here who care, I know I do and we've never even met; it pains me greatly to see someone feel the way you do.  Please hang in there and do whatever you need to do to get over this season of you life.  There is nothing like true biological depression, nothing like it, ask me how I know.  You can be free though...

[peaches250210]

my god iv had an unnderactive thyroid since i was born, wen i was 20 i fell pregnant n i was goin thru a stage of 4gettin my tablets n i had a miscarriage we didnt no y but deep down i think it was cos ov the lack of thyroxine in my system and then again at 21 i fell pregnant again and thank god i went full term with my princess and she is healthy it is hard to control wen ur pregnant took 7 months to get my dose right. so its not just you that you have to think of, do u want kids wen ur older?? do u want to fall pregnant and then lose ur baby just for not taking a tiny tablet....u can even get it in liquid form now!! its not hard!! im a mard arse n got a crap memory but i make sure i take my tablet everyday i dont wanna miss my little girl growing up and i dont want my family puttin me in an early grave stop being selfish n take the god damn thing

[alley115]

im worried my sons consultant wants him to stop taking his thyroxine 75mg for over a month, hes been taking it since he was born hes now six i dnt want put him in danger or any pain but should i trust doc or not plaese help

[lilypeps]

i went through a phase where i didnt care about my meds and was a pain in the bum because my doctors are never open and it was a pain to get an appointment. i was diagnosed with an underactive thyroid when i was about 10 years old. im 19 now and havnt been taking my 75micrograms for about two years. my friends always tell me how moany and depressing i am. looking back at pictures from a few years ago, ive put on alot of weight, i used to wear size 8-10 and now in some places i have to buy a 14. im always tired, i have no get up and go and always very emotional. my dad tells me he loves me and i break down in tears. but dont you think im not going to be sitting outside my doctors until they open so i can get back on those tablets and shift some of this weight. not taking the thyroxine has made me depressed and put on weight. which leads to comfort eating which leads to more fatness and just letting myself go. not goooooood

[jada110]

I had thyroid cancer and therefore had my thyroid removed. I gained 40 lbs. in six weeks---yes 40, and have continiued to gain even though I am up to 200mg's daily. I have moaned and groaned to my 3 doctors, esp. my endocrinologist. I have also been plagued by memory loss and lack of concentration, I was tired all the too---a severe lack of energy, I hadn't slept properly at night in just as long. I'd wake up and jump straight out of bed in the middle of the night from cramping--legs, back, hands, feet, everywhere. I was irritable, severely depressed, and had panic attacks. I was in a fog constantly. I thought I all of a sudden developed allergies---to everything---all year round.   WELL, I ran out of levothyroxine and did not have the money to buy it, so I of course could not take it. It has been almost a month, and let me tell you, my "allergies" have completely gone away---I can breathe again!   I have more energy than I have had since I had my thyroid removed, The past two weeks I haven't even considered a nap. I feel and think sharply and clearly--like I used to. I have been feeling emotionally better as well-----ALOT better. I am not putting on weight, in fact the opposite, and am going to get a scale to prove it. I fell truly as though I have literally come out of a fog!  At this point I do not have health insurance so I will not be going to my doctors. But when I am able to, it will not be the same ones that I have been complaining to for the past 5 years. I really think I am allergic to this stuff, and my quality of life was not up to par while taking it. I will say that I did take Synthroid when I had insurance and it seemed to work better, so maybe that would be an alternative (if you have health ins cause it is really expensive). I don't know, but I do know I will not be taking Levothyroxine ever again.

[goolarra]

You might want to start your own thread...you'll get more response from a new question than tagging onto an old thread like this one.

It sounds like you do need a new doctor.  Since you no longer have a thyroid, going without meds is not an option.  It sounds like your meds were never properly adjusted.  Have your doctors been testing free T3 and free T4 as well as TSH?

It takes 4-6 weeks for levo to completely clear your system.  It's possible that you've been overmedicated and are returning to a better level, but be aware that you will start to feel hypo without meds.  After thyca, it's important to control hormone levels to prevent recurrence...don't let this go...find a new doctor right away.

You might be allergic to the fillers in the levo you've been taking (active ingredints in all T4 meds are identical).  

[ollie802]

I am 60 yrs old and taking 50mg thyroxine dailly. I have no tolerance to heat and terrible night sweats. Also suffer dreadful cramp and sickness. Recently I stopped tablets for a week and felt so much better. Started with same bad symptoms as soon as I restarted tablets. Help!  From ollie802

[goolarra]

It sounds like you might be overmedicated.  The best thing you can do now is have your levels tested...FT3, FT4 and TSH.  Be sure they order all three.  Your symptoms sound somewhat hyper (overmedicated), so it's quite possible you need to be taking less than 50 mcg.  When you get results, be sure to get reference ranges as well since these vary lab to lab so have to accompany your results.  If you post results, we'll help you interpret them.

If your levels confirm overmedication, you can lower your dose.  If not, you can look for other factors that might be causing these symptoms.

Have you been diagnosed with a thyroid disease?  Have you had a thyroid ultrasound?  Do you have nodules?  

[Manigo]

I had a total thyroidectomy in 2009 and take 1 little blue pill every day (levothyroxine137 mcg). I once forgot to get my refill and missed 4 days and I will never do that again. I had no energy and just wanted to sleep. TAKE YOUR MED!!

[kbarcher]

And what happens if you can no longer get the thyroxine?  I mean, if the medication becomes unavailable... for whatever reason... there has got to be a way to tapper off one's need for thyroxine (unless of course one no longer has a thyroid) and to kick start the thyroid into working again.  Eliminate the stress, eat well, think well, or simply ... be well.

Just sayin'...

[goolarra]

Unfortunately, in the majority of cases since Hashi's is the most prevalent cause of hypo in the developed world, damage to the thyroid is both progressive and irreversible.  A "dead" thyroid is no more productive than no thyroid.  So, no, no kick-starting...if that were possible, we'd be treating thyroid disorders/diseases that way.

However, rest assured that the availability of synthetic thyroid meds is quite secure.  If our meds become unavailable, it's probably going to be the least of our worries since it would take a catastrophic event...

[kbarcher]

Thanks for the reply goolarra,

I'm going to grab onto the 'in the majority of cases' part of your message.

To share a little... I was originally diagnosed in '99 and was on Synthroid for a little over 1 year.  When I was first diagnosed, I was so pissed... a friend that was going through menopause at age 28 recommended a doctor out of Boulder Colorado.  At that time Boulder was kind of a mecca of alternative healing practices and practitioners.  At least well before it spread throughout the States.  Over the course of a year, with the direction of that doctor, regular blood tests, and a 'major' life style change, new job (left the corporate world), and a new life in the mountains... I was able to ween myself off of Synthoroid.  A remission if you will.

However, after 4 years of no symptoms, I got married, had a child, went back to work (the corporate world) and within about 2 years, 2006, the Hasimoto's returned.  I've been on Synthoroid for 5 years now... and feeling worse and worse with time.  I started at 50mcg and recently a doctor had me all the way up to 175mcg one day and 150mcg the other thinking it would help... but it didn't.  And I've had it.  The side effects have been near catastrophic.

I'm thinking the developed world and it's way of living, may actually be part of the reason Hashimoto's has become so prevalent.  The physical, emotional, mental and environmental stresses are ridiculous.  I think there is lot to say for my life in the mountains, with it's slow pace, easy living, peace and serenity that kept the Hashimoto's at bay.  My return to the rat race and the every day grind seemed to have played it's part in bringing it back.  I let the desire (and pressure of a demanding spouse) for the almighty dollar ignore my dying thyroid.  And/or my seemingly inherent inability to handle the stress involved with the pursuit... ;-)

I figure, as before, I didn't get Hashimoto's in a day, and I didn't escape it's clutches in a day the first time.  I will try again... because life on this little pill *****.  In many ways, I already feel as if I'm trying to get away from a catastrophe.  I've neglected my thyroid for too long.  It's still there though, and I will endeavor to nurture it back to health once again.

Anywho, here's to finding a better way, and to anyone else out there that is actively trying to find a better way then a little pill every morning.  Find the support you need, do it your way and do it safely. I'll post an update if I find my way.

Kind regards and best wishes to all those working there way through this kind of thing.

[lolly2012]

Hello I am on 100mg of thyroxine the thing is at the moment I am away from home my prescription ran out today but I wont be home until Tuesday so that means me going 5 days without my medication, Should I cut my break short and go home or should I be OK for the 5 days? I have never missed my meds before but have the odd bad day if I don't eat regularly I tend to feel weak and get the shakes even when on the tablets.

It will be costly to come home early, but it has made me think if there were some kind of emergency where people couldn't obtain their meds ( transportation breakdown causing no supplies in chemists ect) where would we all be so would like to find some kind of natural supplement just in case I ever needed it any ideas on that ?
Thanks in advance lolly

[goolarra]

Both my endo and I are convinced that stress is a majot factor in precipitating the onset and intensity of the progression of autoimmune disease.  I'm not convinced it CAUSES Hashi's, but I do believe that avoiding stress may make it possible to delay the hypo symptoms of the disease for longer.  Also, anything that improves your general health will make you feel better.  However, if the antibodies are still at work, they will catch up with you eventually.

Do you have labs and ranges to post?  When we hear that people on ever-increasing doses with no improvement of hypo symptoms but increasing side effects, something else is usually going on, the most prevalent probably slow conversion.  

We are often poorly treated by Western medicine.  However, with a little education, we can become our own advocates and get what we need.

Lolly, could you call your doctor and ask for a prescription to be called in to a pharmacy near where you are now?  Your doctor should be able to do that for you.  I still maintain that any event that would distupt the supply of meds to that extent would have to be global and cataclysmic...on the order of "kiss your butt goodbye".  A lot of people with other diseases would be in much more trouble, much faster than thyroid patients...

[lolly2012]

Thanks for the advice I have picked up prescription at a chemist where I am now, It cost me £6.00 when usually free but I guess its worth it to be safe rather than sorry.
Thanks again Lolly

[goolarra]

Small price to pay just for the peace of mind, especially if you're on holiday...don't want to ruin that!

[samanthanky]

I'm so tired an depressed n i don't get any sleep. I've been taken 75mcg of Levothyroxine for 8yrs an i'm so tired of the way i feel. I just feel like the pill is not dng anything for me, my body hurts an i never feel like leaven the house or dng nothing. I go to the doctor every 3 months for blood work an i take my pill so why do i feel so bad?? I's it because i'm getten older?

[Barb135]

Do you have current thyroid lab results that you can post for us to look at?  With your lab results and their reference ranges from your report, we might be able to help you figure out why you feel so badly.  It could very likely be because your hormone levels are not right for you, even if they are in the so-called "normal" ranges.

[samanthanky]

i really don't no, i go to the doctor an i take my pill. i started feelen like this 2 yrs ago. honest i really never thought about how bad this was that i have

[Barb135]

You should always get a copy of your lab report every time you go to the doctor.  Your doctor is obligated to give you a copy, upon request. I make notes on mine, indicating what med(s) I'm on, at which doses and how I feel. That helps me "target" the numbers, at which I feel best.  

It's not enough to just be "in range" -- you have to hit levels that are right for you.  Many of us find that we feel best with Free T4 at about mid range and Free T3 in the upper 1/3 of its range.  For many of us, TSH is totally insignificant, so if that's what your doctor is determining your dosage on, s/he will keep you ill.  I had a doctor who did that to me.  

[samanthanky]

I've been going to him for five yrs an i tell em how i feelen depressed an no energy and i lay on the couch 24/7. He just gives me more pills. I don't no what to do i'm so agravated i can't think rite . I guess i need to get a new doctor but dread going threw the hole thing of a new doctor learnen my health an how i feel. I read alot about  thyroids today, Heck i didn't no it was so dangerous . I've been so busy raising my kids that i didn't really didn't ask no questions bout it ..I just new i had to take the pill for the rest of life. I feel so dumb now after i read up on it. My doctor acts like it's no big deal so i thought it was all good. I didn't no u cud get so sick. I been taken this pill almost 8 yrs an always felt good until this last yr.

[Barb135]

Can you get at copy of your latest lab report and post the results here on the forum? Then members could evaluate them and possibly make suggestions that would help you know what to ask your doctor for.  

[Cujo64]

I am in the same boat...  I had the radiation in 2003.  In 3 months after that I gained 30 pounds!  So they put me on thyroid meds.  It took almost a year to loose that weight.  Since then my weight has gone up and down, they change my meds all the time.  And the doctors told me that my thyroid regenerated???   What the....?  Now the last year or so I am so tired, sluggish, lost interest in everything and my doctor does nothing for me... I have not taken my meds in a week and I feel better now than I have in years.  I dont know what to believe anymore...  can anyone help?

[swhite9400]

I had a full thyroid removal in 1999, I was on several different meds until the last was levoxal, I took that for a few years. I lost my job which ment my insurance too so I had no meds, I havent taken anything for 2 years now, yes I feel tired all the time, my bones hurt and I cry alot but I'm not dead , I keep pushing forward. I recently got a new job with insurance but dont know if I want to go through all the hassel again.

[gimel]

You absolutely should no continue untreated.  Insufficient thyroid hormone levels can be very detrimental to your long term health, and can even be fatal.    Take advantage of having insurance again and go and get tested for the biologically active thyroid hormones, Free T3 and Free T4, along with TSH that they always test.  If the doctor resists testing for FT3 and FT4 then you should insist on it and don't take no for an answer.  

You will need a good thyroid doctor that will treat you clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  symptom relief should be all important, not just test results.  

When you see a doctor about your thyroid, ask if he is willing to treat you clinically for symptoms rather than just by blood test results.  Also ask if he is willing to prescribe thyroid meds like Armour thyroid, and also Cytomel.  If the answer to these is no, then you will need to find a good thyroid doctor that will do so.

If you want to know more about clinical treatment, this is a good link.

http://hormonerestoration.com/files/ThyroidPMD.pdf

[Danniabg]

Hi I could do with some help.
I am from the UK but am currently living in Bulgaria.
A fast growing nodule was discovered accidentally last Oct, and I have since had it removed.  It turned out to be benign thankfully, but more nodules were discovered and so I had 3/4 of my thyroid removed at the same time in July this year.
My thyroid was functioning properly before removal.
Last week I went for my first blood check, and it was just the TSH, but I also got my cholesterol checked as last Oct it was high, then I managed to get it down, and last week it is higher than the first time (but not by much)
Now it turns out that my thyroid is underactive, and I have been put on 25mgs of Euthyrox 50.
I am confused as I keep seeing T3 and T4 being mentioned, but my tests were for the TSH, MAT and TAT.
I don't know what those last 2 were for but maybe what Bulgaria calls T3 and T4??

Thank you for all these posts they have helped me a lot, as I was thinking of not taking the thyroxine for another 3 months and then getting more bloods as I feel well, but since the op have noticed my hair is falling out (though it does every summer since I moved here) and my skin on my face and elbows is drier, and my stomach has felt bloated, plus in the mornings not long after I have eaten I always feel really hungry!
Not sure if these are symptoms or not.

Anyway I'm rabbiting now :)
Thanks again and hope someone knows the answer about my tests.
Nikki

[gimel]

What I said to swhite above, applies to you as well.  You need to be treated clinically by testing and adjusting free T3 and Free T4 (not the same as Total T3 and Total T4), as necessary to relieve symptoms, without being constrained by resultant TSH levels.  So you really need to find out what those 2 tests were.  I don't have a clue.  Why not just call and find out from the doctor.  And then you also need to find out if the doctor is willing to treat you clinically as I described.

Based on what we hear so often from our UK members, I'm not sure if you will be worse off, doctor-wise, in the UK or in Bulgaria.  LOL

[Danniabg]

Thanks for your quick response.
I took a closer look and I see it says next to MAT/anti - TPO
and TAT/anti - TG
So I googled these and found the following..

MAT = Antithyroid Peroxidase Antibody (Anti-TPO) "Anti-TPO Abs mediate antibody-dependent thyroid cell destruction; levels correlate with the active phase of the disease. Measurement of this autoantibody is useful for resolving the diagnostic dilemma presented by the apparent inconsistency between elevated TSH and normal free T4 results. Given abnormally elevated TSH and euthyroid T4 results, a positive anti-TPO Ab test provides strong evidence for early, subclinical autoimmune disease. This assay is also used to monitor response to immunotherapy, to identify at-risk individuals (with family history of thyroid disease), and as a predictor of postpartum thyroiditis. Approximately 10 percent of asymptomatic individuals have elevated levels of Anti-TPO Ab, which may suggest a predisposition to thyroid autoimmune disease. Elevated levels are found in virtually all cases of Hashimoto's thyroiditis and in approximately 85 percent of Graves' disease cases."

TAT = Antithyroglobulin Antibodies (Anti-TG Ab) "The prevalence of Anti-TG Abs in thyroid autoimmune disease is significant (85 percent and 30 percent in Hashimito's thyroiditis and Graves' disease, respectively) but it is much lower than the prevalence of the Anti-TPO Abs. The diagnostic information provided by Anti-TPO assays is rarely improved upon by the addition of an Anti-TG determination. The growing trend is to adopt the anti-TPO Ab test as the front-line test for autoimmune disease and no longer to routinely use the anti-TG assay routinely for this purpose."

Sorry but none of this makes very sense to me as I am very new to this.  The problem is that the language barrier of course. I have to take an interpreter with me (who found out she has an underactive thyroid too) but as I don't really know what is the 'normal' way with this, I have to assume that my endo knows what she is talking about.
I am on the 25mgs a day for 2 weeks and then to 50 mgs per day until December, when she wants to do bloods again. I don't get why she wants me to increase the dose and then not do bloods to see if they make a difference.
If I get these Free T3 & T4 tests, do I need to come off the euthyrox before I have them, does anyone know?

Sorry this is a long post, but hoping someone can give me advice on what would be normal testing now.

Thanks in advance
Nikki

[gimel]

Those two tests are for the thyroid antibodies, TPO ab and TG ab.  Those are used to determine the possibilty of Hashimoto's Thyroiditis, which is the most common cause of hypothyroidism.  Since you have already had 3/4 of your thyroid glands removed, at this point it is kind of academic to be testing for Hashi's, it seems to me.

At this time, it would be far more important to know if you are having some of the 26 typical hypo symptoms listed in this link.

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

Then the next thing of real importance is the levels of your biologically active thyroid hormones, Free T3 and Free T4.  Free 3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.

Most important of all for you is to have a good thyroid doctor that will treat you clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  symptom relief should be all important, not just test results.  Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range, and FT4 adjusted to around the midpoint of its range.

I think you can get some good insight into clinical treatment from this link to a letter written by a good thyroid doctor for patients that he consults with from a distance.  The letter is sent to the Primary Doctor of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

[Danniabg]

Hi Gimel
thanks for that information, maybe my endo will want to test for FT3&4 next time.
Can you advise me on my test results please? (or anyone)
The previous TSH tests I had in 2010 at 6mth intervals, while my nodule was being observed, were 2.4 and 2.3 and then this time, 2 months since the removal of some of my thyroid, was 6.17. As I said I feel fine, my hair always falls out every summer since I moved to Bulgaria, so I can't attribue it to my thyroid. I have only felt that my skin has got a little drier and bloating of my stomach.  
That's it.
I looked at the symptoms link you sent, and I have a few of them anyway and have had for a while, such as joint pain (shoulders and wrists) but I put that down to sitting at a pc for long hours. And my periods became more frequent over 2 years, but have settled in the last 6 mths.
My heart rate is fast, blood pressure has been low. Shortness of breath when exercising in the first 10 mins then I am fine.
So I don't think my symptoms are obvious for a thyroid problem, are they?

Anyway I appreciate that you might not be able to advise, but I value your opinion, and anyone else's.

Have a great day :)
Nikki

[gimel]

with the removal of most of your thyroid glands, your symptoms, and your low dosage of T4 meds, yes I think you have a thyroid problem.  You should not wait around for months for more of the same from your doctor.  I would insist on testing for Free T3 and Free T4, not Total T3 and Total T4.  I would also make the doctor aware that FT3 and FT4 results that fall in the lower half of the range are frequently consistent with being hypo and that you want to be treated clinically to relieve symptoms.  I would also give a copy of the above link about clinical treatment to the doctor to try and influence him to treat you clinically.  If that does not work, then you need to move on to another doctor that will do so.

Also sending you by PM, a link that provides a lot of good info you can also use with your doctor.

[leo44105]

OMG i have had my thyroid removed,it dnt do me any good i have been on the tablets,feel tired and drained,always cold,my doc did say it is inportant to take it everyday u need it to live,i get my bloods checked all the time they just cnt get it staedy,im on injections of vit 12,i pro will go threw this the rest of my life,DID REALLY KNOW HOW INPORTANT IT WAS TILL I READ THIS

[cachawaca]

With all due respect are you for real ?!you don't have a  thyroid!stopping your medication with the intention of it being long term will result in
Probable and eventual death! Seen as you don't have a thyroid, your not making the vital hormones essential to life and healthy normal functioning of your body, this is the rationale behind taking your pill everyday! In a nut shell you most likely will decline to myxedema coma, where you will then be sent to hospital and someone will attempt to save your life. They may be successful, they may not ! Do yourself a favour and take your meds daily.

[Gill75]

I am 36 and was diagnosed with an under active thyroid when i was pregnant with my 1st son 15 years ago. Until 3 months ago i have never took my meds properly. Guess i just didnt realise how dangerous it was. My doctor was constantly on phone to me wondering why i hadnt been for prescriptions for Levothyroxine. When i told him i wasnt taking them because they werent making me feel any different he was not too pleased. He then explained all the things that would happen to me by not taking them. So 3 months ago i promised everyday i would take my meds and get bloods tested once a month. I am now on 175 a day. I have lost 1 stone but thats the only difference. I have irregular and heavy periods,hair loss, always cold, heart palpitations, depression, aches,no energy at all. Needless to say im going to pay another trip to my doctors to find out why im feeling like this.  

[goolarra]

You would get more attention to your issues if you posted a new thread rather than tacking onto an old one like this.  Just go to the top of the page and hit the "Post a Question" button and follow instructions.

A few questions you might answer when you do that:

How were you feeling in the years you weren't taking your meds regularly?  Did you have lots of hypo symptoms?

Please post your recent labs (since starting to take meds regularly).  Has your doctor been testing FT3, FT4 and TSH?  Post reference ranges with results.  Ranges vary lab to lab and have to come from your own lab report.

[caysdad]

please help me this is so serious...
      my fiance' and i just ended our relationship in a very rough way, she has been (for lack of a better term) going crazy , horrible modd swings, depression, random outbursts and verbal bashings at me. tons of negative talk, and tons more...she had her thyroid taken out years ago and sometimes goes days without taking her meds... i know she is risking everything and now she is trying to take our son from me, i believe she is both bipolar and extremely depressed... she recently went 18 days with out taking it, ended up going into seizures, while our baby was in the bed with her, i was overseas on deployment, knocked him off the bed and then a random friend had to take him while she recovered on her own.. i want my son and honestly i want her to be better, with out me around, but i still care for her she is the mother of our son and i want him to be able to go and see his mother whenever he wants... can anyone help me here.. please!>?!? i need to prove what is happening to her in court and then find her help.. any ideas??

[Barb135]

Your fiance certainly has some issues; as stated above, your situation would get more attention if you start your own thread, rather than latching on to one as old as this....

Depression often goes hand in hand with thyroid issues, but we need to know more about her; her symptoms appear to be both hyper and hypo.  What type of medication is she on, for her thyroid?

[kittieebby]

Ohkay. I have a SERIOUS case of hypothyroidism, & havent taken my meds in MONTHS, & I feel better then ever. W/o my meds, I feel 100x better then when I do take them.

[gimel]

You will get lots more notice and response if you will start a new thread of your own, by clicking on the orange "Post a Question" button at the top of the page and re-post your comment, and also please answer  these questions.  

I would also suggest that you will get better feedback if you will post your thyroid lab test results and their reference ranges shown on the lab report.  Have you ever been tested for the thyroid antibodies, TPO ab and Tg ab?

What meds are you taking and what was the daily dosage?  what symptoms were you having when you were taking the meds?

[josephine000]

Try erfa or armour or naturethroid natural decicated thyroid hormone you wont look back. Buy it yourself. Just google.
Saved my life 11 years on levo hell. amwell now on erfa. all the bestxxx

[dizzydog]

i never knew just hoe important my tyroid was, im on 250  a day ,and it s  been geting "lower" my throid, that is,  in 2months ive had to increase ,50 mg more , what will happen when i reach sky high dose x

[goolarra]

Often, when you have to take very high doses of thyroxine, it's because you're not on the right combination of meds, or there's a metabolic issue that's making it harder to adjust your thyroid meds.

This is a very old thread.  You'll get more attention to your specific concerns if you go to the top of the page, hit the orange "Post a Question" button, and tell us a little bit more about your condition.  

If you have them, please include your latest thyroid labs.  Post reference ranges also since they vary lab to lab and have to come from your own lab report.  Also, give us some history...how long you've been being treated, if you have Hashi's, etc.  

[mayagirl00]

I've had hypothyroidism for 1 1/2 years and I got diagnosed because of a seizure...usually on the medication i feel bad, diarrhea, nausea everyday but no more seizures or dizzy spells or loss of body control (that I did have before the medicine).  Lately I stopped taking the medicine because I started taking heavy vitamin intake and I feel way better, no more diarrhea, no more nausea and I've got alot of energy..but I'm worried that i could be in trouble without taking my medicine as the doctor said that not taking it could cause me to slip into a coma..from reading all these posts I decided to take my medicine again (just took a pill) but I'm NOT looking forward to feeling like **** again...why do I feel SO bad on the medicine, I've tried different levels but still i feel bad on it...

[goolarra]

This is a very old and long thread.  You'll get a lot more response from members to your individual concerns if you go to the top of the page, hit the "Post a Question" button and start your own new thread.

Please include recent thyroid lab results if you have them (with reference ranges).  Do you know if you have Hashi's?

Thanks.

[djdean7]

I went to the sights you listed looking at symptoms and what causes hypothyroidism. I am 45 years old and have never had a sign of thyroid problems, the doctors did blood test several times throughout my life because I am a large woman and do not eat that much so they tested TSH levels to see if that was the cause. Never had problems. I was not comfortable with the doctor I had, he was a sweet heart but not very thorough. I went looking and found a new doctor, she ran several blood test as a new patient. She checked my TSH and said it was horrible, in the 1000's. She put me on levothyroxine 25 mcg. They say I cannot take my echanacia that I took every fall to keep me from getting sick throughout the winter.  This was very upsetting to me because I would take echancia twice a day for six weeks and would not get colds or flu's. Since I started the levo and stopped the evhancia, I am sick all the time. I think my dr may not know what she is talking about. I had no symptoms of thryroid problems, other than the weight but all the women in my family are obese and none have ever been diagnosed with thyroid problems. I am weening myself off of this levo and going to make an appt with an endo dr. Since taking levo I have had to start taking a anxiety pill, high blood pressure pill, sleeping pills for the insomnia tylenol for the headaches. I have had this feeling of a hair in my throat since taking levo which makes me continually cough a horrible cough. It seems to have caused more problems than anything. Could her test have been an inaccurate reading, could something I was taking ( for ex. echanacia) or eating have caused an inaccurate reading. I had no symptoms, it doesn't run in my family and I have had all kinds of problems since taking this pill. I was obese but healthy before the pill.

[Barb135]

I just commented on your other thread.

[Delou]

I never miss taking my levothyroxine. I have been in china 4 months 5 days ago I ran out thought i had another packed. went to local doctor no English given little tub with 40mg tabs inside brown in colour only thing in english packet say is thyroid tablets. I need 100mg a day and terrified of taking these. Any sugestions. have another month before returning to UK

[fresita7]

I haven't take my pills like for 2 days and I feel ok.

[gimel]

Since T4 is so slow acting, missing for two days won't make very much of a change in your blood level of T4.  So I'm not surprised that you don't notice any difference in such a short time.  However, assuming that you really needed the T4 meds in the first place, if you continue to not take your meds, you risk becoming very hypo, with all the accompanying unpleasant symptoms.   What is the point of not taking the meds?

[paches22]

I have been on levothyroxine for 7 years and they are agin uping my dose from150 to 300 i think this is to much they say not very many people are on this high of a dose and I am affraid to take it. I dont get how my levels have changed so much in just a couple months does anyone no what can cause such a jump in level?

[gimel]

Answered on your new thread.

[kathit]

the side effects i have with any thyroid meds are worse  then the risk of death i have no thyroid and last time they checked my tsh was 342.80 and hashimotots antibodies were above 1000 i have not taken my medicine for 8 months now and although i have gained some weight and have some artritus issues i still feel better then when i was on those pills!

[Barb135]

This is a very old thread and most of the people who have posted on it, are no longer participating in the forum.  

Your situation would get much more attention, if you would start a new thread of your own.

[Cinn613]

When I stopped taking my levothyroxine after about 4 weeks I had debilitating problems with depression and anxiety and hypertension.  I cried all the time, felt usless and worthless, stayed in bed, had no desire to eat, watch tv, read, go out and I had sever panic attacks..with dr instructions U have restarted my med and it has been 6 weeks and my recovery is slow...I still dont feel like myself and I am still not going out or eating or doing normal house chores..I can concenrate and read now and I dont cry all day..but I still cry sometime each day...I am losing my hair by the handfuls (which is why I stopped the med in the first place)..but I would rather lose my hair than feel crazy all the time...the depression is a side effect of not taking your meds...I remember wishing I could just go to slepp and never wake up...and these side effects didnt come till I had stopped the med for about 3-4 weeks.  

[Barb135]

We haven't seen Depressed1956 for a while, so doubt you will get a response.  Hair loss is a result of being hypothyroid, not from the medication, so even before you stopped taking the med, most likely you were under medicated.

Since this is a very old, long thread, your situation would get more attention if you would post a new thread, listing your symptoms, current lab results (with reference ranges) and what medication(s)/dosage(s) you are on, plus how long you've been on them.  That would help members assess your situation and possibly make suggestions for adequate treatment.

[Katie_2006]

I too would like to quit taking my medication (Synthroid). When I take it I feel worse. Like my mood (depressed, frustrated wanting to cry at times during the day & so on), sweating/hot flashes, mental periods I miss months.

[Barb135]

As stated above, this is a very old thread and we haven't seen most of the people who posted in a very long time.

Why not follow the link below to the main page of the thyroid forum and start your own thread, listing symptoms, medication(s) etc.  Also please post any current thyroid labs you've had done, along with reference ranges, which vary from lab to lab.  This will help members assess your individual situation and give you more personal attention.  

http://www.medhelp.org/forums/Thyroid-Disorders/show/73?controller=forums&action=show&id=73&camp=msc

Once you get to that page, just hit the orange "Post a Question" at the top of the page and put in your information.

Look forward to seeing your post.

[Perdendo]

Yeah. Listen to everyone else. One pull a day? I take 10, twice a day.. I mean it may be annoying the way I have to space them out, eat certain amounts or be sick for two days due to it if I mess up, or have sleeping issues due to them. I'm on Levo. And I feel way better because of it. So whine all you want, it's probably not worth it to even tell you anything. But if you are a smart person, you will continue your meds. I am 23, with extremely high blood pressure (if I miss a dose) a nearly dead thyroid, fibro,  and liver biliary cirrhosis. So get over yourself.

[aliciamarie89]

If you quit taking your medicine your body will slowly start shutting down and you will die. My thyroid doesn't work at all. If I stop taking my medicine for even 1 week. I get very sick. I've been diagnosed with Hypothyroidism since I was 10. I am 23 now.

[Kaitte]

hey alyygirl122, I wanted off the Levo, so I did just a few days ago... they shut down my thyroid in 91... it was off the chart... now I take a Raw Thyroid hoping it feeds my other glands.  I feel better, more energy and not as achy... when I took the dosage they gave me I was hyper, seems like I leveled out when I cut it in half... but tell them that... what do you think about natural therapy??

[kdavidson_39_nc70]

If you have a prescription from a doctor take it to Wal-Mart it is $4.00 for a 30 day supply. I can't even afford to go to a doctor for my thyroid except an emergency room so I stay out of my med for a week or 2 and I can tell when I do not take it. I need to find where I can go to get my pills without having to pay a lot for a doctor to write a script.

[Barb135]

The raw thyroid you are taking has no measurable thyroid hormones in it, so you will most likely have to go back on thyroid hormones, at some point.  

It sounds as though you should have had blood work done and gotten a lower dose of medication.

kdavidson -- most counties in the US have a County Health Dept, which charges for care on an income basis; if you can't afford to pay, it's free.

You can't get the medications without a script.

[Ascubagirl]

I've been on levothyroxine 75mg for two years. I feel just as sluggish as I did then with my diagnosis of hypothroidism. The dr. says then, well they're a little off, the levels. But, will go ahead and start you anyway. I don 't and haven't felt any difference but weight gain, and fatigue. My sister n law was diagnosed in her teens, come to find out.. She got really sick, had to have thyroid removed bc she was misdiagnosed. Now, will continue to have it the rest of her life ans still  must continue taking it for the rest of her life.  I don't know what to do in my situation. But, I despise the way it doesn't help and seems to be making me feel worse. I have chrones d.o. And I feel a lot of my problem is just that alone. Should I keep taking the thyroid pill? It's been four days and just as sluggish and fatigue as ever. Only bouts of energy here and there at 37. So confused and wish I'd never started the med. Sincerely

[Ascubagirl]

I meant 75mcg*

[Barb135]

You need to consult with your doctor before stopping your thyroid medication.  It would be helpful if you could post your actual thyroid hormone levels, with reference ranges, so members can help assess your treatment.  It seems as though you might need an increase in your dosage.

[Ascubagirl]

Well, I went a month ago and they said my levels were just fine. That is why it doesn't make any sense to me. Bc the same issues I'm having now, I was having then. But, I do plan on rescheduling to see if they can do some further testing. I just thought I would try and see what happened if I didn't take it, would there be a difference for the better. Seems after four days, I was wrong. possibly, I will get back on untill I see dr and any suggsestions as to questions or tests they can run?

[simple14]

Hi, I had a panic attack 3 months ago and after blood test by my GP, it was discovered that i have under-active thyroid. My TSH level was 11.1 and free T4 level was 14.6. I was informed by my GP that i was on the borderline and was prescribed with 25mcg levothyroixine.
Upon taking the pills, i had more panic attacks, palpitations, lack of sleep and generally feeling unwell - low blood pressure, tremors, prone to cold.

After a month, I went back to my GP and blood test ware done again, TSH level was 6.08 and free T4 level was 17.8. The dosage was left to 25mcg. The symptom got worse. I would get up middle of the night and my heart would be palpitating.

I went back to the my GP and was bit teary so he prescribed me with 50mcg and propanolol to reduce the heart rate. I took 50mcg for about 2.5 weeks and palpitation seems have to reduced. However my other symptoms still carried on being worse. I have stopped taking medication for past 2 days and feel lack of energy, getting numbness to part of my body and have headaches. Is this normal when you stop medication?

With my initial TSH level and free T4 levels, was the GP right to prescribe 25mcg?

[goolarra]

What's the range on your FT4?  Ranges vary lab to lab so you have to post range with results.

[Kayla2945]

Hey, I have been taking Levothyroxine for about a year now because my doctor diagnosed me with it....i have been feeling sluggish and never getting any sleep...i finally decided to go to a nutritionist who studies natural medicine and his diagnosis was that i was actaully hyperactive instead of hypo..he said my thyroid has the symptoms of hypo but that was a inacurate diagnosis... the last time i had blood checked the doctor said my levels were normal but i still felt weird...so thats when i went to the herbal doctor..hes wonderful! i have been taking supplements to help with my thyroid and it works amazing...maybe yall should find a natural doctor in your area and see what they say..

[Barb135]

Please post these "hyperactive" lab results... I surely hope they aren't based on TSH.... Be sure to include reference ranges with any results,since ranges vary lab to lab and must come from your own report.  

There are no herbs/supplements that can make up for a lack of thyroid hormones, indefinitely.  If your try to do so, your adrenals will become stressed, because, typically, the adrenals try to make up for lack of thyroid hormones.

You could be setting yourself up for horrible illness down the road.

[cubanbaby21]

I have a 5.6 when my thyroid is tested. Before i took the 50 mg of generic brand i was losing weight and feeling good. now that im taking the pills i gained 10 pounds in a month, I wanna stop taking them.

[Barb135]

What's 5.6? Is that TSH?  Is that all that's being tested?

What "pills" are you now taking, that you want to stop?

This is a very old thread; why not start a new one, with just your own information; it will be easier for members to answer.  You can start a new thread by clicking the orange "Post a Question" button at the top of the page, type in your question, then click the green "Post a Comment" button, just below your comment.

[riverridge]

omg you sound like me! I decided to stop taking my synthroid over 7 months ago and feel totally better and even lost 21 pounds. But now I cannot even open a jar and have such pain in my left side ( feels like my heart) so they are now testing my pancreas and gall bladder. can this pain be from not taking my thyroid meds? ***@****

[Barb135]

Why would you stop taking thyroid hormones?  What was your diagnosis?

Anything that feels like heart issues should warrant a full heart workup, not a check on pancreas and gall bladder, which are located on the right side of the body, just beneath the rib cage.  Not saying that gall bladder isn't an issue, but trust me - I've been there, done that, and the pain won't be on the left side.

Do you have current thyroid blood tests?  These should include, at least, TSH, Free T3 and Free T4.. If you have these, please post the results, with reference ranges, since ranges vary lab to lab and must come from your own lab report.  

I don't understand why anyone would stop taking thyroid hormones for no reason.

[Bevann48]

Babes, I do not have ins and my pills are very cheap. You can also apply for assistance thru your hospital for help or 100% coverage for your office visits. THERE is HELP for the non insured. I am taking lev {generic for Thyroid synthroid} I feel HORRIBLE! my number was 4.33 about two months ago -just have it taken yesterday so waiting. but getting really BAD headaches every night they are waking me up. I know I cannot go off the med! UGH.....

[kattail]

but what if you can`t afford it, like me . I take many meds and it is getting that I can`t afford them .I have not had my levathyroxin in maybe three weeks. I am having night sweats and lack of energy, what do I do ??????

[Barb135]

There are free clinics you can go to, to get medication.  Have you applied for Medicaid?  You must get your medication.  You can check with your County Health Department.  They can help you.

[im_emily]

is it possible to have a seizure from not taking the meds? i went on vacation and didnt take the med nearly enough (totally my bad!) but the doc didnt know the cause of it. im 30 and never had a seizure before im just wondering how nervous i should be?

[kazzy1966]

hi there ave had a overactive thyroid that reversed back n forward to over n under i like all off the people on this have had a really bad time off it good days bad days im having my thyroid removed on the 11th of june i was only put on thyroxin 4wks ago although i hav been taking carbizomole n pranadol since being diagnosed since taking thyroxin over the last 2 wks my hair has started to thin down a dont know if it has anythg to do with the tablet or not and my eyes are getting worse i hav graves in my eyes as well will the removel (removal) of my thyroid stop my hair from comming out n help my eyes i an so down with this please if someones been loseing there hair n have it in there eyes hav they had it removed in did it help thku karen

[holly123647]

Hi all  I jad my throid removed last October 2011  and I have recently read that 64% of women are showing signs of sever constipation, and I am one of them.  Is anyone else having constipation problems.  I am now having tst on my colon to see if there is anything else wrong inside me.  Would like to know   Thanks a lot  Joan

[goolarra]

Rather than comment at the end of a very old thread like this, you'll get a lot more attention to your individual concerns if you go to the top of the page and start your own thread by hitting the orange "Post a Question" button.  

Constipation is a very common symptom of hypo.  When you start your thread, please post recent thyroid labs so members can evaluate the adequacy of testing and treatment.

[CA1123]

PLS  DON'T DO THAT!!! I TOO FEEL THAT WAY ...MANY TIMES IT IS A TEMPORARY SITUATION..i AM BORN IN 1960.i AM VERY SICK AND DISABLED AND LOST MY BF IN CAR ACCIDENT 3/17/07 AND THEN MY DAD LESS THAN 6 MONTHS AGO..HE WAS MY BF.I TOO FEEL I HAVE NO JOY IN MY LIFE..IF YOU WOULD TO CHAT..MAYBE WE COULD HELP EACH OTHER..MY  E MAIL IF ***@**** (I BEEN HAVING COMPUTER PRO BUT WILL GET NEW  ONE THIS WEEK.MY ISE
THERE WAS A TIME I ASKED GOD TO PLS TAKE AND  TOO MY SURPRISE I AWOKE AT 4:30AM FROM A SLEEP HAVING A HEART ATTACK I WAS IN MY 30'S IN GREAT SHAPE.BELIEV ME WHEN REALLY FACED WITH DEATH ...I WAS BEGGING I WAS ONLY KIDDING..YOU ARE PROBALY DEPRESSED BC OF SITUATION PLUS ATHYROID PROBLEM!! DON'T DO IT!!!    VERY CONCERNED    CAROL
I STOPPED TAKING MY SYNTHROID ABRUTLY BC MY DAD DIED AND OVERWHELMED WITH PAPERWORK AND LAWSUIT..NOW I FEEL HORRIBLE AND HAVE HAD 3 EPISODES OF TACCARDIYA MY HB IS NORMALLY IN IT;S 40'S IT HAS JUMPED TO 200 ON 3 DIFFERENT OCCASION FOR 1/2 AN HOUR OR MORE.I HAD NO IDEA THIS WAS DANGEROUS..IT HAS BEEN 2 MONTHS WITHOUT SCRIPT NOW I HAVE IT AND I AM AFRAID TO TAKE AGAIN BC I THOUGHT SYNTHROID SPEEDS UP HEART..THAT IS WHY IT WAS PRESCRIBED BC OF LOW HB BC OF RSD......?????DK WHAT TO DO?? SEE A DOC   WHICH ONE???

[Barb135]

As has been noted numerous times, throughout this thread, it's very old and most of the posters no longer participate in the forum, so I'm sure that Depressed1956 will not comment.

I don't know if you are aware of it, or not, but typing in all caps indicates that you are yelling at people.

Synthroid is not prescribed to increase heart rate; it's prescribed to treat hypothyroidism.

Your situation would get much more attention, if you'd post a new thread. Be sure to include any current lab results and reference ranges, for each.

[cynthia11]

the doctor said i had to much then 75 still felt crappy then nothing at all. says i have to ride it out. i feel so lousy.

[Barb135]

I'd  have to go back and reread your posts, to understand your situation.  What are you "riding out"?

[chica433]

Hi! my name is Vickie and i have thyroid problems,my tsh is high 16.8 but my t3 and t4 is normal and i am taking a dose of 50 mg, I have been getting dizzy and nauseous,sometime im working at the computer and cant remember what i was doing or were i am,hot all the time and cant sleep,i stopped taking my meds for 6 days already and feel great but i dont want to stop them because i heard that is not good..What do i do...

[gimel]

You've attached your post to a very old thread.  You will get lots more notice and response if you will click on the orange Post A Question button at top of page and re-post, thereby starting your own thread.

[Quinnherrington]

What if you all ready feel ran down and sleep 12 to 14hrs each day and the doc not no real help in anyway I'm at a turning point where life as very little value to me sleeping as much as I do I don't live it anymore

[gimel]

I'm sure there is an underlying cause for your need for sleep.  If you will please post results and reference ranges for whatever tests your doctor has done, members can try to assess their adequacy, and advise further.

[Justasking50]

Hi.. I was just browsing the site to see what would happen if I. Issued my thyroid pill and I scrolled down the page and saw your post. I hope you are ok. Have you been to a doctor?

[bhawna211]

Hi i'm hypo but since last year i have been monitoring, my TSH is in the range 7 to 9 miU , i was not taking any medicine as my doctor adviced because  T3 & T4 were under range ...but now i'm pregnant my Dr. put me on 50mg levo, because of pregnancy we have to keep TSH level 1.5 to 2 miU. but im worried about long term medication. Can i be able to quit levothyroxin (levothyroxine) ???

[gimel]

First let me explain that TSH is a pituitary hormone that is supposed to reflect accurately the levels of the biologically  thyroid hormones, Free T3 and Free T4; however, in reality TSH does not correlate with either Free T3 or Free t4, much less with what is  more important, which are symptoms.  So, trying to regulate a hypo patient's meds and symptoms by using TSH as the diagnostic, does not work.  It is far more effective to test and adjust Free T3 and Free T4 as necessary to relieve symptoms and maintain adequate levels of the actual thyroid hormones. Please post your thyroid related tests and reference ranges shown on the lab report and members will be better able to comment on your status.  

As to whether you will be able to quit levothyroxin (levothyroxine) in the future, it depends on the cause for your being hypothyroid.  If it is only due to your pregnancy, then your thyroid function could return to normal afterward.  If your hypothyroidism is due to the most common cause, which is Hashimoto's Thyroiditis, then that is a long term issue that will require ongoing testing and treatment.  Have you been tested for the thyroid antibodies associated with Hashi's?  Those tests are TPO ab and TG ab.  

[msesh53]

I do not know where you live but, if you are in the States and have a Kroger or Walmart, whether you have insurance or not the cost is always $4.00 for a thirty day supply.

[chepo74]

Can levothyroxine can couse problem with errection disfoction ?
Im taking 88mg and I feel like Im not having strong errection anymore.
9-04-2012
                                     Thank you

[lldolls]

PLEASE HELP! I have been taking Armour Thyroid for about 2 years and my hair has been slowly falling out, my dr. said that it is usually temporary but you can now see my scalp and it hasn't stopped! I also have been taking Estrogen for about 15 years and am afraid this is a conflict between the two. Also I am cold all of the time and have night sweats, insomnia and heart palapitations. All started after taking the Thyroid replacement drug.

[wairua]

Simply, How long will it take?

[Barb135]

Depends on the person.  Your thyroid controls heart rate, body temperature, metabolism, etc.  Being hypo can cause heart rate to slow to dangerous levels, as well as other damage.

[wairua]

How long would you estimate it would take, and how would one know they are going into a coma, I am now into my 4th year of completely going without meds I belive I feel better for it.

I have decided to take back the power.
By the time all the other things occur one would expect to bow out

[wairua]

Thank you

[HGOB]

I was doing fine until one day my doctor started prescribing this medicine for me. I took it and now I feel more tired and am constantly thinking about food (to be truthful I always think about food)
Years ago before this medicine was available we all lived too.
My grandparents and parents lived to a ripe old age and they never took this stuff.
Now I read by some here who state that I will die (short of parts falling of my body --humor) because this medicine is some kind of holy grail. in the event that I should stop taking it.
The pharmaceutical companies want us to take this medicine because it's their business to make money. Saying that, I wonder who the persons who add their comments here are even real?
None of these people here are qualified to give advice and I certainly am not either. I'm just giving my own opinion

[gimel]

I assure you that the people who post here are real.  And through their personal experience, and knowledge gained by constantly searching for scientific data, there is more useful info about thyroid issues available on this Forum then you would get from the typical doctor's office.  The lack of adequate testing and treatment for thyroid issues within the general medical community is why we have so many Forum members.  They are searching for answers because they still don't feel well.  

We'd be happy to try and help you as well, if you want to give us some background info about why you were diagnosed and given thyroid med.  What symptoms do you have that might relate to thyroid issues?  Also, if you would please post your thyroid related test results and their reference ranges shown on the lab report, members will be glad to assess the adequacy of your testing and treatment.

[Abora64]

I just wanted to respond to the mutiple comment like ". . . this is a very old, long thread, your situation would get more attention if you would post a new thread, ."   I could tell you were getting frustrated with people tagging on but I honestly did not understand how to repost until you so obviously pointed the button out in your "Oct 22, 2011 " post..

This thread has so much in it that Google sends people here multiple times. Much of the factual information was provided by you, Thank You!  Lots of us are reading and looking for the answers. We are just to timid to write, much less confront Dr. Im God, especially when Dr God talks in acronyms and ranges.  After reading all the post, your answers and the information you requested, I am much better prepared to speak with the Dr. (and maybe I only think he thinks he is God)

Thanks again for posting your information and pointing out how to navigate the site.

[alannah3639]

Thyroxine is a lifesaving drug for some, not all.  Years ago before this drug was available, medical science was nowhere near as advanced as it is now and many people just got ill and died, for what was then unexplained reasons, is it not possible that some may have had this disease?  Hypothyroidism isnt a myth!!!!  Its a serious health problem which affects different people in different ways.  For those whose Thyroid gland does not funtion at all, it would be life-threatening for them to stop taking meds, for those who have an underactive thyroid, it would cause the sheer living hell that i went through for months before my Ahole doctor finally agreed to blood tests.  Its real, and its horrible to go through life with an untreated underactive thyroid, so if you are bigoted and naive enough to think that Thyroxine replacement drugs are useless then fine, but i KNOW i need to take it, everyday, or i will become sick again, and i wouldnt wish suffering with hypothyroidism on ANYONE!!!

[btaylor256]

i  have been taking levothyroxine 3 hundred plus mg since 2005. I have no insurance and can no longer afford this. i have been off for atleast a month. im cold, fatigued, my voice has changed, breathe harder, and a constant feeling in my throat.

[Barb135]

Yes, I do keep telling people that this is an old thread and yes, you're right, google does keep sending people here.  By all means, I want people to read the thread and get whatever help from it, they can; however, the thread is very long, and since it's so old, most of the early posters (and some more recent ones) are no longer active on the forum.  It's much easier to respond to a particular person's situation, if they start a thread of their own.

I began suspecting that if someone found the thread via google, they might not be familiar with MedHelp and might not know how to start a new thread.  That's why I posted the instructions.  Now, I'm glad I did.......  :-)

I understand that many people are too timid to question their doctors.  Most of us have learned the hard way, that we have to take our health into our own hands and fight for what we need. That's why we provide the information we do, so people can go to their doctor armed with the knowledge to have a hand in their care.

That said, I'm very happy that you were able to get some valuable information from the thread.  I'm sure there is more information we could give you, if you'd care to post a thread, listing your particulars.

Welcome to the forum and thank you for your kind words.

[Barb135]

Your symptoms indicate that you are becoming hypo again.  You need to get back on medication.  Most areas have free clinics from which you can get necessary medication.  Additionally, most counties have county health departments from which you can get free care/medications.

[mauer]

My father has multiple myeloma, which is like leukemia. They found he also had thyroid cancer so they took his thyroid out and gave him the radioactive iodine treatment. Sadly, some of the cancer cells escaped the treatment and are now in his lungs. Treatment will mean taking him off his thyroid meds for a while and then doing the radioactive treatment again. I need to know what the probable side effects will be from having no thyroid meds. Previous posts on this very old and long thread indicate he may be extremely tired. Can anyone tell me if this may end his life possibly due to myxedema coma?

[Bear875]

Hello, I know it has been some time since you posted your comments but I was wondering if you are still off your meds?  I too had thyroid cancer about 10 years ago.  For the past three years I have had difficulties with my meds.  I have developed an intolerance to them.  I've tried Eltroxin, Synthroid, desecrated and even went to the States to try their brands.I've had a compound pharmacist make me different batches of levothyroixine and changing the fillers but I still have a severe reaction.  My doctor took me off my meds for one week to do some blood work.  I felt much better off than on.The first two days I felt tired but than my energy levels picked up.   I am afraid to go off my meds for any longer than a week.  If my blood work comes back shows little reduction in my T4 and T3 count, I plan to go off my meds for longer intervals and keep testing with each interval.  Just wondering what is the longest time you have been off your meds?  Thanks

[blondiekayla19824]

Whenever I seem to just stop taking my Levo it seems like I get really tired. I'm only off of it for a couple of weeks, and all I want to do is sleep. Can that effect you as well? So far I've been off of it for 14 or 15 days.

[goolarra]

Fatigue and drowsiness are both symptoms of hypo.  Your metabolism is shutting down without your meds.  Why are you not taking your meds?  

This is a very long, old thread that takes ages to load.  It might be best if you go to the top of the page, click the orange "Post a Question" button and start your own new thread.  

[chrissy198032]

So I had my thyroid removed a few years ago and I am 32 and the doctor told me that I would have to take meds for the rest of mylife and that doctor retired so now I go to a diffrent doctor, and for some reason he will not give me my meds he said I don't need them so I didn't really think about it. So I have been off my med for anout 4 or 5 months now and I am always tired depressed don't want snyone around me. I kicked me husband out of my house after being married for 14 years and I don't even know why I kicked him out I just want to stay in bed all the time. Do you think all this could be from not taking the meds? I am just a B word and I don't like myself

[yellowrose696]

Hi, I can't believe they don't take thier meds!! I have thyroid problems also. I didn't know they were so important. I was using a Nurse P to treat mine and he took me off mymeds for for 8 weeks. I thought I was going to die!!! One day I would be on the couch the next day I would be walking the floor. I also had very bad mood swings.. Heart paps. very cold then hot. I am now going to an ENDO.
he said give him 5 weeks and he can get me right.. I have been back on my meds for a couple of weeks. Heart paps are not as bad but still have mood swings.. I pray he can get me well.

[goolarra]

Without a thyroid, you absolutely, positively have to be on meds for the rest of your life.  It sounds like your current doctor has no clue what he's doing.  If he won't give you your meds back, you'll have to find someone who will.  Has he been monitoring your thyroid levels since he stopped your meds?

As I said above:

"This is a very long, old thread that takes ages to load.  It might be best if you go to the top of the page, click the orange "Post a Question" button and start your own new thread."

Ditto, yellowrose696.

We can then direct our comments to your individual concerns.

[yellowrose696]

I was put on Syntroid 25 in 2003. The Dr I was using moved to anoter state. I didn't have a clue how serious thyroids can be. I started using a local N/P. He would do blood work about every 3 months. He had his nurse to call me and told me to get off the meds for 8 weeks. I did. Wrong. I felt like I was on my death bed. I ask him to hook me up with a specialist and he said to let him handle it. I trusted him. I had to go back to him because I knew something was wrong!! My body was telling me.I had no energy,heart Paps really bad,hot then cold. I told him what was going on and I insisted on him sending me to one.He did. This great Dr put me back on Syntroid 50. I still have no energy but the heart paps have gone. I still have a few panic attacks.He said give him 5 weeks and he will get me stright. It has been 4 can't wait till I get off the couch.. This N/P could have killed me. He knew I had CAD and onall kinds of heart meds. The heart paps are no good period,espically

[Poolsander]

I had my thyroid removed 3 years.  I have been on Levothroid 300mcg for the past 2 years.  
One year and 3 months ago my insurance switched me to a conversion plan because I had previous cancer.  So the rate was very high I could not afford it.  I have been without health insurance for the past year and 3 months.  The Levothroid medicine I had for 6 months I have been able to make it last for the past year and 3 months.  I skip doses and go about 3 days at a time without taking it.  I hope to get insurance soon, I know that this is not good.  I am afraid that I will go into a Myxeridima Coma.  

[goolarra]

You might try contacting the pharmaceutical company that makes your meds.  Most of the drug companies will assist you if you can't afford your meds.  

As has been noted before:  This is a very long, old thread and takes ages to load.  After reading through this thread, please go to the top of the page and click the orange "Post a Question" button to start your own new thread.  Members wil then be able to give your concerns individual attention.  

[mstucker464]

I had radioactive Idione treatment over a year ago..Then I was put on levothryoxine medicine..I have been taking It ever since,I recently went back to doctor,for bloodwork,It now shows I am still hyperthyroid,and doctor has taken me off my levothryoxine for four weeks..I am not feeling well, and was wondering If anyone could tell me what to expect for the next four weeks,the doctor is going to do more bloodwork then,and reccomends I go to internal medicine for more radiation.

[gimel]

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?

[only1tomi39]

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.

[abbeyv]

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?

[Dixie1962]

In the uk if you have a underactive thyroid you do not have to pay for any med including levothroxin.

[achibella]

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?

[LiOch9]

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.

[afterthestorm]

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.

[goolarra]

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.