Thyroid UK
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What will happen if i just stop taking levothyroxine

I have been on levothyroxine for 15 years for underactive thyroid my dose is 200 mg per day what are side effects of this and is it true i could slip into coma and die if i stop taking any meds?

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If you don't mind me asking, why do you want to stop? Do you still have hypothyroid symptoms despite being on 200mcg?

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My doctor keeps putting dose up and down quite frequently alway between 175 and 200, i havnt taken any for 1 week and only today i feel tired nut i didnt have much sleep last note, nefore i was diagnosed i would sleep all day and nite and my thyroid was only producing the lowest levels the doctor had seen i had many other side effects but now i am wondering if i meed it at all

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It takes time for it to leave your system which is why you may not notice much difference just yet, but if you leave it much longer you may have a hard time recovering.

It is very possible that your doc is still not giving you enough and/or the right meds.

Do you have your last blood test results and ranges? If you post them here you may get an idea of whether your thyroid is being adequately looked after (though if it was you'd probably feel better).

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What is the worst tht could happen if i stop is it true i could die because i dont want to mess woth meds if this is the case

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I think it will mess up all of your body systems eventually, you'll progressively get worse, probably develop dementia and depression, problems with heart and joints etc etc. and I understand you could go into a coma, but it all depends if you have a thyroid that works - underactive doesn't necessarily mean inactive

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Hi you wrote post a couple of years ago saying that eventually thyroid disease will cause dementia and mess up all your body systems. Well I'm 47 and that's just how I feel. How did you discover this as its not listed as a side effect of the disease.

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Angelica69 Please do yourself a favor & get the book called " The Thyroid Solution". The author of this book ( who is also a Doctor) is one of the 3% of endocrinolo-gists that actually " Think out of the box" " & can CURE people of this horrific disease! 97% of the rest of endocrinologists Follow ancient teachings from 50 years ago that do Not Even work!!! I have been suffering with Graves' disease for 15 years & Synthroid does Nothing but make it Worse!!! If you want to learn more about hypothyroid or hyperthyroidplease go to U-Tube & type in hyperthyroidWith the name Dr. Farley. He will open your eyes. The problem is NOzt in the Thyroid... but in the Pituitary & hypothalam-is....which gives signals to the thyroid gland. He even explains WHY people Never feel better on Synthroid. I had a chance to go to Houston to be cured by the Doctor who wrote "The Thyroid Solution". People come from all over the world be cured by him. Sadly....my husband died a short time before my appt.... & then a week before my appt my dad dropped dead of a heart attack. I never went to see that Doctor & have been suffering for the past 15 years. I wish you a better life cause I am ready to give up on mine. I hope this helped somebody.

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Goodness me.....don't give up. See a thyroid specialist. There must be one in your area.

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Ask your doctor

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HiI am very sorry you stop levothyroxin and how you fill now thanks a lot

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I take 150mg daily will it do anything if I just stop have not taken mess for 48 hours

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I'm sure I've read somewhere on this forum that when you either raise or lower your Levo dose that your body responds - briefly - by ramping up the amount of T3 you make (the active form of thyroid hormone). Often people feel lots better at first when the dose is changed. But unfortunately the effect doesn't last. I'm pretty sure you're still going to need the Levo (or another form of thyroid hormone replacement). Plus it has quite a long half life - Levo stays in your system for quite a while after you stop taking it. The chances are the effects are only just starting to wear off.

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Why is it a problem to increase and decrease the dose? Does it make you poorly?

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It would be astonishing if you had managed to take 200mcg Levothyroxine for 15 years when you didn't need it. You would have been so over medicated it would probably have caused a heart attack.

It can take up to eight weeks for levothyroxine to completely clear your system. Coma, followed by death, is likely within 3-6 months. If you allow yourself to go into a coma, and are found in time, treatment is IV levothyroxine for 3 days.

Then you start tablets again, raising dose gradually and having blood tests until you are back to where you are now. Well, where you are now, if you haven't suffered irreversible brain damage, heart attack, kidney and liver failure/damage from the coma.

If adjusting your dose is unsettling you so much, tell your GP. It would be better for you to be a little over or under medicated rather than so fed up with altering the dose that you abandon meds altogether. You could refuse to increase dose or decline blood tests so your GP can't titrate your dose according to your TSH.

If Levothyroxine isn't resolving your symptoms there are other medications available, although you may have to buy online rather than get free NHS Levothyroxine.

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Thank you for your reply this is very helpfull

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I'm surgically thyroidless and I stopped all meds in November for 4 weeks because Levo had made me so ill. I wanted to cleanse what I felt sure was a toxic build up.

I felt marvellous for the first couple of weeks but increasingly cold and exhausted after. By the end of the 4th week I slept most of the time and when I was awake felt disconnected as if I was slipping away. A friend was very concerned that I might slip into a hypothyroid coma.

I resumed Levo and it took 4 weeks to bring my TSH down from 107.5 to 0.16, slightly higher than recommended after thyroid cancer.

Recovery was swift but 3 months later my skin was peeling off my face, hands, arms and legs. Legs are still shedding confetti everywhere. These were external signs of hypothyroidism. I can only hope I haven't caused myself internal damage.

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I was thyroidless without meds for around 6 weeks (to cap your 4, Clutter!) ;) As I had to have 3 sessions of ablative radiotherapy, so couldn't take any thyroid hormone. The effect was as you describe, cold, tired, disconnected. In addition, whilst my weight didn't increase, my body shape changed from young Adonis to lard lad, my mental acuity went through the floor and I cried at the most pathetic things - Oh look, a kitten! - cue tears. It really was a most remarkable experience, becoming a Cretin, as I still knew that I used to be able understand concepts and events which were now beyond my comprehension. It was, in short, an experience I would never wish on anyone.

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Is humbled by your impressive 6 weeks. :o Did it take you long to get TSH etc back in range?

Was your cancer I-131 resistant? Just wondering why you needed radiotherapy ablatement.?

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Wonder no longer, but not here. I've posted my answer as a new thread. Here : healthunlocked.com/thyroidu...

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Hiya, what you have just said.. Is where I'm at now.. I had a total thyroidecomy 6 years ago and my levels have never been right.. Increased meds.. Then lowered them!!!. Got so fed up that I thought I would stop taking them.. 5 weeks have gone pay and I felt really good at first but now I'm really tired, lost weight but not sure how!!.. Cry over everything and anything.. I had my bloods done last week and GP called me yesterday saying she need to see me.. Last time they did this it was normal!!! But still adjusted my meds.. So fed up with taking all these meds now..

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Hi clutter I have had what I would call allergic reaction to thyroxine and went off of thyroxine for 5 weeks felt great but my tsh had gone to 111.8 any way I now have terrible tremors and severe feeling of injecting poision into me everytime I take the thyroxine or I'm even trying straight t3, any ideas? I'm very concerned for my future 

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Nordidordi,

This is a two year old thread which means you won't get many responses.  It is better to write a new post by clicking on Write a post in the top right hand corner of the page.

TSH 118 is profoundly hypothyroid which is why you have terrible tremors.  It will take several weeks for the T3 you have started taking to build up and restore FT3 levels and bring down TSH levels.  How much Levothyroxine were you taking, and how much T3 are you self-medicating?

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My tsh in 13 days on 20mg has dropped to 32. 

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Omg this is happening me right now. !!! No one will listen been hospital 5 times , I believe I had heart attack. 3 weeks ago but stupidly didn't recognise it while few days later !!! ... I am going this morning and want answers !!!!

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How did you get on???

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I'm thyroidless also. I would like to quit taking Levothyroxine also. I would love to take something that is more natural. I've been searching all over for what to do.

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Hietterfamily,

While the active T4 and T3 in natural dessicated thyroid (NDT) is natural being derived from pig thyroid, the rest of the fillers in NDT are synthetic.

Some information on the ingredients in NDT brands stopthethyroidmadness.com/a...

NDT is prescription only in the UK. It isn't licensed for UK use so it is rarely prescribed on the NHS. Most members using NDT have private prescriptions or buy on the internet and self medicate.

If you want online sources without prescription Write a new post asking members to send you feedback via private messages. Members are more inclined to share sources if you give a little background information and say how much Levothyroxine you are taking.

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Tell your doctor you want armour thyroid. It's pig thyroid. In pill form. It has all the thyroid hormones you need..even t3 you will feel human again.. I've been taking it 6 years.. amd i have no thyroid...it's the only thing that has made me feel normal.. it has been a life saver....

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Hello MAy I ask pls what drs suggested after you lost your thyroid? Do they advise thyroxine and have you tried it before deciding to start armour? I am asking this because GP suggested me today to stop taking thyroxine for some time to see if my hand dermatitis might be caused by thyroxine given that itching start soon after taking 50 mcg of thyroxine in the morning. I have been taking it for 13 years but dermatitis started 2 years ago and nothing helped of creams, no allergies. I was surprised to hear it from GP but was happy to find out if thyroxine is a reason for itching and reaction on hands only. I wonder if I should consult private endo or maybe reduce it to 25 to see if it gets better. i have tried all 3 manufacturers of thyroxine. Tks, Neri

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Wow, amazing info clutter. Thanks x

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What the doctor never seems to check is......Have you fasted before the blood test.....and it seems you should not take your tablet that morning.....to get a correct reading. There also seems advice.....hard to follow.....to take the tablet on an empty stomach and not to eat for an hour afterwards. a.m seems to be the desired time......but I read of someone taking it at bedtime to help them sleep. .....Not sure how that works? Sleep is however a problem for me.

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Seascape06,

Early morning testing and fasting prior to testing are patient-to-patient tips because TSH is higher that way and that can help get a diagnosis or dose increase. If leaving an hour between taking Levothyroxine and breakfast is difficult you can take it two hours after breakfast or at bedtime. Bedtime can be better because research has shown that absorption may be better at nighttime.

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What are your sources on this? I have been off my medication for about 4 years now..(I wouldn't recommend it, but with no insurance it's sort of the only option for me at the time being.)

But, I'm alive. Very tired, suffered weight gain, some hair loss, and forgetfulness most days. But very alive...

If coma followed by death were likely after 3-6 month, I would think many people would die before even being diagnosed. And for people who can't pay $500+ to go to the Dr. every few months for lab, like myself, would surely be dropping dead daily.

Just curious in your sources for this info?

Please and Thank You.

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Lynn463,

Before any treatment, it was considered that about twelve years was not uncommon between start of illness and death.

Myxoedema coma can occur in people still taking levothyroxine. And the presenting issues are quite often not the classic symptoms of myxoedema coma itself such as heart issues. Sometimes the onset of serious issues is very sudden.

There are many papers on the subject available - but I do not at this moment have time to go through to find relevant ones.

ncbi.nlm.nih.gov/pubmed/?te...

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Lynn463,

I was talking about people who have no thyroid. I can't source as information was bookmarked on a computer which no longer works.

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Myxoedema coma is a likely result. People do die from it - it has a high mortality rate.

However, you might not have recognisable myxoedema. And you might not be in a coma as is usually understood. Further, you might not so much "slip" as suddenly fall - some serious events can catapult someone from relatively OK to seriously ill extremely quickly. And, to cap it all, your thyroid hormone levels might be relatively "normal". Which means that even if you seek treatment (or someone does on your behalf) your condition might not readily be recognised/diagnosed.

patient.co.uk/doctor/Myxoed...

There are many reasons for your doctor to have increased/reduced your dose regularly including simple things like the time of day at which blood was drawn for testing.

Rod

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(I'm replying to the original poster, not helvella. Sorry, I put this in the wrong place...)

This is a link to a paper published in 1949 in the British Medical Journal - it is scary stuff :

ncbi.nlm.nih.gov/pmc/articl...

The paper title is "Myxoedematous Madness". Myxoedema is an old name for hypothyroidism, which is still sometimes used by the NHS. For instance, the word is used in listing people who are entitled to free prescriptions :

"Medical exemption certificates are issued on application to people who have:

A permanent fistula (for example caecostomy, colostomy, laryngostomy or ileostomy) requiring continuous surgical dressing or requiring an appliance

A form of hypoadrenalism (for example Addison's disease) for which specific substitution therapy is essential

Diabetes insipidus or other forms of hypopituitarism

Diabetes mellitus, except where treatment is by diet alone

Hypoparathyroidism

Myasthenia gravis

Myxoedema (that is, hypothyroidism requiring thyroid hormone replacement)

Epilepsy requiring continuous anticonvulsive therapy

A continuing physical disability which means the person cannot go out without the help of another person. Temporary disabilities do not count even if they last for several months

"

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Not everyone just falls into a coma and dies. There's the bit in between where you are doing untold damage to all your vital organs, not all of it reversible. Liver and kidney damage mental health issues like depression and psychosis, to name but a few.

Long and short of it is if you need Levo, then you need Levo. Some people will die quite quickly others can linger on with a half life for years. Its not pleasant

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Unfortunately unless told otherwise by your doctor for other reasons Levo is for life in various doses. Your dose is pretty high at 200mcg and I hate to think what it would do if you were suddenly taken off it. I imagine all those chronic pains in your joints would come back plus tiredness, even if they dropped it by 50mcg let alone. My sister who is 70 was dropped from 150mcg to 75mcg all in one go. Her body could not tolerate it as all the old symptoms reappeared and she had to go back to the doctor. She is now good at 125mcg.

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I've had hypothyroidism since I was born and I haven't took my meds in 3 days. My doc won't see me till next week. I kinda have the same question as to what could happen in a week if not taking my meds? I'm 24.

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Im 17 and mines congenital too.

Dont worry 3 -5 days isnt really the end of the world but you will start to get side effects.

I suffer from depression and will go through phases where I refuse to take my thyroxine, the longest I went was almost 2 months; like others were saying I felt disconnected and also I collapsed a lot, and had absolutely no energy. Im still recovering and am under surveillance with my doctor.

All I can say is always take your medication it is so so important!!

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Does anyone else suffer severe sweating when taking levo?? I know its a rare side affect but I suffer badly with this

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I suffer terrible night sweats don't know ifs down to Levo or not

Just know it drives me mad

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I sweat way too much! I'm on 200mcg levo.

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Iv just stopped taking 150mg daily only been 48 hours don't want to take ever again is this damaging

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I don't have the money to back to my doctor for blood work to get my thyroid medication. what will happen to me without it?

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hotsex, Depends how much thyroid function you have and how much Levothyroxine you were taking. I would expect you'll feel tired, achey and will gain weight and may start losing hair a couple of weeks after your last dose. Can't you negotiate a repeat prescription and schedule the blood tests in a month or two?

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I have been on thyroxine since I was 6 months old (22yrs) I have always been awful at taking my meds. I take 125mg. I haven't taken my meds for about 3/4 months now, I know I'm silly. But I just forget I try everything under the sun to remember. Putting them places, setting alarms, you name it I've done it. However I think some of these comments are way out there. I cannot imagine you will go into a coma and die, I'm not a doctor of course and everyone is different. I don't feel like my meds change me that much at all. But who knows

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Most certainly you could slip into a coma and die.

After this stage has persisted for an indefinite period of months or even years, death takes place because of intercurrent infection, congestive heart failure, or both. The final symptom is coma, which may last for days. In the untreated patient, the length of time between the first symptoms and death may be as long as 15 years.

thyroidmanager.org/chapter/...

I can't bring myself to even imagine the suffering between initial diagnosis and the final coma.

It is, of course, entirely your choice what you now do. And your responsibility. Your inability to imagine going into a coma will not protect you at all from the suffering or the coma. Though you might not be sufficiently hypothyroid to end up there.

A longer extract from the same link:

9.9 MYXEDEMA COMA

Definition and pathogenesis.

Myxedema coma is a rare, life-threatening clinical condition in patients with long-standing severe untreated hypothyroidism in whom adaptive mechanisms fail to maintain homeostasis. Most patients, however, are not comatose, and the entity rather represents a form of decompensated hypothyroidism 1 ,-5 . Usually a precipitating event disrupts homeostasis which is maintained in hypothyroid patients by a number of neurovascular adaptations. These adaptations include chronic peripheral vasoconstriction, diastolic hypertension and diminished blood volume; in this way a normal body core temperature is preserved. The hypothyroid heart also compensates by performing more work at a given amount of oxygen by better coupling of ATP to contractile events. In severely hypothyroid patients homeostasis might no longer be maintained if blood volume is reduced any further (e.g. by gastrointestinal bleeding or the use of diuretics), if respiration already compromised by a reduced ventilatory drive is further hampered by intercurrent pulmonary infection, or if CNS regulatory mechanisms are impaired by stroke, the use of sedatives or hyponatremia 2 .

Diagnosis .

The three key features of myxedema coma are 1 : 1. Altered mental status. The patient may be entirely obtruded or may be roused by stimuli. Usually lethargy and sleepiness have been present for many months. Sleep may have occupied 20 hours or more of the day and may have interfered even with eating. There may actually have been transient episodes of coma at home before a more complete variety developed.

2. Defective thermoregulation: hypothermia, or the absence of fever despite infectious disease. Usually coma comes on during the winter months. The severely myxedematous patient becomes essentially poikilothermic. With cold weather the body temperature may drop sharply. The temperature is subnormal, often much depressed: a temperature of 74 F (23º3 C) has been recorded. A thermometer reading lower than the usual 97 F must be used, or hypothermia may be missed.

3. Precipitating event: cold exposure, infection, drugs (diuretics, tranquillizers, sedatives, analgetics), trauma, stroke, heart failure, gastrointestinal bleeding.

Diagnosis on clinical grounds is relatively easy once the possibility is considered. Previous hypothyroidism had been diagnosed in 39% to 61% of all cases (6,7).The pulse is slow, and the absence of mild diastolic hypertension is a warning sign of impending myxedema coma 1 . Any patient with hypothermia and obtundation should be considered as having potential myxedema coma, especially if chronic renal insufficiency and hypoglycemia can be ruled out. The diagnosis can be confirmed by finding a reduced FT4 and marked elevation of serum TSH. However, TSH will not be elevated in myxedema coma due to central hypothyroidism (4% to 18% of cases (6,7,8). Sometimes serum TSH is just slightly elevated, possibly related to co-existent nonthyroidal illness 19 . Creatine phosphokinase is often elevated. Both hypoxia (80%)and hypercapnia (54%) may be present (7) . Hypothermia with a temperature less than 94ºF (34º4C) is seen in 88%.

Treatment. Myxedema coma is a medical emergency. Early diagnosis, rapid administration of thyroid hormones and adequate supportive measures ( Table 9-14 ) are essential for the prognosis.

Table 9-14. Recommendations for the treatment of myxedema coma.

• hypothyroidism large initial intravenous dose of 300-500 µg T4; if no response within 24 hours, add T3.alternative: initial intravenous dose of 200-300 μg T4 plus 10-25 μg T3

• hypocortisolemia intravenous hydrocortisone 200-400 mg daily

• hypoventilation don’t delay intubation and mechanical ventilation too long

• hypothermia blankets, no active rewarming

• hyponatremia mild fluid restriction; conivaptan ?

• hypotension cautious volume expansion with crystalloid or whole blood

• hypoglycemia glucose administration

• precipitating event identification and elimination by specific treatment (liberal use of antibiotics)

In view of the rarity of myxedema coma, it has been difficult to perform randomized studies to resolve the issue of whether T4 or T3 is the most appropriate treatment. There are advocates of T4 therapy alone 9 . T3 therapy alone 10,11 , and combinations thereof 12 . Differences in opinion about the optimal treatment are caused by a/ the lack of RCTs, b/ the precarious balance between the need to attain effective thyroid hormone levels in target tissues as fast as possible and the risk of precipitating fatal tachycardia or myocardial infarction, and c/ the impairment of T4 into T3 conversion associated with severe illness and inadequate caloric intake, which favours T3 therapy over T4. If T4 alone is used, it should be given parenterally in doses of 300 to 500 µg to replace the calculated T4 deficit 13 . Since the average volume of distribution of T4 in a 70-kg human is approximately 7 L, 420 µg should cause an increase of 77 nM/L in the serum T4 concentration.After this initial ‘loading’ dose, a maintenance L-T4 dose of 75-100 µg/day is given intravenously or orally if the patient is alert. Serum T4 with this schedule usually increase into the normal range within 24 hours, and an increase of serum T3 can also be observed (14). Initial L-T4 doses larger than 500 μg have no advantage and are associated with higher mortality (15). Mortality was 17% in patients selected at random to receive 500 μg T4 intavenously as bolus followed by 100 μg T4 daily, but 60% in patients treated with 100 μg T4 daily (8). However, the difference in mortality between both groups was not significant likely due to small sample size (n=11). If T3 alone is used, it may be given as a 10-20 μg intavenous bolus followed by 10 μg every 4 h for the first 24 h, and 10 μg every 6 h for days 2 and 3 (4).L-T3 doses larger than 75 μg per day are associated with higher mortality (15).The patient should be switched to oral therapy when possible. There has been one case report of a patient with myxedema-associated cardiogenic shock who did respond to T3 but not to T4 treatment (16) but exposing tissues to very high doses of T3 is not without risk. If T4 in combination with T3 is used, 200 to 300 µg of T4 and 10 to 25 µg T3 are given intravenously as an initial dose. After 24 h 100 μg T4 is given intravenously, followed by 50 μg T4 daily from the third day until the patient regains consciousness. Intravenous T3 is continued at a dose of 10 μg every 8-12 h until the patients is conscious and can take T4 maintenance dose 4,12 .

Intravenous glucocorticoid should also be administered during the first days of therapy, since in severe hypothyroidism pituitary-adrenal function is impaired, and the cortisol production rate is lower. While this low production is adequate when cortisol metabolism is reduced, as it is in hypothyroidism, the rapid restoration of a normal metabolic rate from the above treatment may precipitate transient adrenal insufficiency. In addition, the patient should be intubated and measures taken to retain body heat. Central warming may be attempted but peripheral warming should not, since it may lead to vasodilatation and shock. The cutaneous blood flow is markedly reduced in the hypothyroid patient in order to conserve body heat. Warming blankets will defeat this mechanism. Mechanical ventilation may be needed, particularly when obesity and myxedema are combined.Hyponatremia is characteristic and free water restriction and the use of isotonic sodium chloride will usually restore normal serum sodium, as will improved cardiovascular function, which is one cause of the impaired free water clearance.The new vasopressin antagonist conivaptan might be useful in treating hyponatremia as high vasopressin levels have been observed in myxedema coma, but so far no case report has been published in which this drug had been administered Serum glucose should be monitored. Supplemental glucose may be necessary, especially if adrenal insufficiency is present. Hypotension may develop, particularly if myxedema is severe. Volume expansion is usually required to remedy this, since patients are usually maximally vasoconstricted. Dopamine should be added if fluid therapy does not restore efficient circulation. Concomitantly, a vigorous search for precipitating factors should be instituted. Determining whether an infection is present should be a priority, since as many as 35 percent of patients with myxedema coma have infection. Since hypothyroid patients cannot mount an adequate temperature response, the usual signs of infection, including tachycardia, fever, and elevated white blood count, may be absent. Prophylactic antibiotics are indicated until infection can be ruled out; upper respiratory infection should be eliminated. While the hypothyroid patient withstands the stress of surgery in general very well 17 , inadvertently excessive narcotics, sedatives, and hypnotics can tip a severely hypothyroid patient into coma. History taking from family members can be very rewarding in detecting predisposing events. This is illustrated by a case report describing myxedema coma in an elderly woman who had been eating excessive amounts of raw bok choy (Chinese white cabbage) daily for several months in the belief that it would help control her diabetes; the goitrogenic action of compounds like thiocyanates and oxazolidines (generated by eating raw cabbage) was identified as the cause of her coma 20 .

Prognosis .

Most patients begin to show increases in body temperature within the first 24 hours of treatment. The absence of an increase in body temperature within 48 hours should lead to consideration of more aggressive therapy, specifically T3 therapy if it has not already been initiated. Most patients regain consciousness within a few days. Mortality is between 25% and 52%, and sepsis is the predominant cause of death (6,7). Predictors of mortality include hypotension and bradycardia at presentation, need for mechanical ventilation, hypothermia unresponsive to treatment, sepsis, intake of sedative drugs, lower Glasgow Coma Scale, high APACHE II score and high SOFA score (6). Clinical suspicion, early recognition, prompt thyroid hormone replacement, and appropriate support cares remain the key to successful tretament of this rare but often fatal emergency (18).

Apologies if you find this blunt. I can think of no other way of passing the message on.

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If you were a rabbit, it might only take a few weeks:

jstage.jst.go.jp/article/en...

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I ended up with multiple organ failure, cardiac arrest and several days in a coma. Now on 100mcg levothyroxine and 25mcg T3 daily and doing well

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I detox now and then, i havent taken my tablets for about 3 weeks as i could not take the PMS symptoms. When i stop taking levo i feel better as no PMS. Are there any actual cases of people dying? Or is it the medical profession trying to scare us to make money. Wish i never started taking these drugs.

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For reasons I won't go into I stopped taking my 100mcg dosage early in October last year after being diagnosed with an inactive thyroid 5 years ago. I take multi-vitamins, eat Brazil nuts and exercise regularly. Had blood tests last week at the insistence of my GP and haven't yet had the results but can honestly say I feel fine and have yet to suffer any effects at all. I play a lot of sport, go to the gym and eat pretty much anything. I don't suggest trying this by any means but 'taking a break' for a short period is unlikely to cause any major problems and anyone suffering problems in days is more than likely attributing other things to this rather than actual problems directly related to missing levo. I'm a 59 year old male though and that might make a difference in that I obviously don't have periods or PMT and my metabolism would be slightly different anyway.

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Hello,

I would really like to know what the results of your blood test were and how you are doing now? Are you still off the thyroxine and did you see an endocrinologist?

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I was originally diagnosed with Graves Disease at 34 years old in March 1995 (started me at 150mcg) after I-131 treatment. Since 2009 my dosage had been steady at 75mcg but over the past 4 years I had been complaining to my GP about accelerated hair loss, depression, awaking with a sweat-soaked pillow under my head and vision degradation. GP suggested my symptoms were a normal part of aging.

At the end of April 2016 I stopped taking levothyroxine. My feet and ankles became swollen between 3-6 weeks but have returned to normal since mid-June 2016 and now almost 5 months of no levothyroxine intake I'm not experiencing any symptoms at all. I am 55 years old now and wondering how long I have to wait before initiating a malpractice lawsuit... maybe another 7 months without to make a stronger case?

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Isn't there any natural form of thyroid medicine so that we don't have to put the chemicals into our body?

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Yes....my GP stopped prescribing levothyroxine and I ended up in a coma and had a cardiac arrest this March. Luckily the medical registrar was in the ward where I was when it happened and did CPR 3 times on me or I wouldn't be here.

There is another thyroid med that works better than levothyroxine so I buy mine on-line

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what is the alternative your buying, im on levo and my joints are killing me?

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JC1971

sorry but I would like to ask how you are now.

hope all is good

take care

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Hi JC1971. Ankle & leg swelling could be water retention, or even for a totally different health reason. As Clutter said, if you've taken Levo at that dosage for 15 yrs, it's unlikely to be the cause! I've been on Levo

I assume you didn't start at 200 but that doctor increased it over the years after blood tests. Do you have health issues (apart from thinking you might be pregnant, which hopefully you arent given feelings expressed your post!

Also if you have other health issues and take meds, prescribed or OTC, for those, especially if one is a new one, perhaps that is causing the problem. I had additional health issues and combined with researching my whole health history myself and altering my Levo dosage, I stopped taking the other meds (this IS something you need to discuss with your doctor before doing so)

ONE thing I DIDNT do was stop taking my Levo completely as you have done! I called it my "gut instinct" to continue taking it!

I was fortunate I survived the decision to stop the others with no ill effects, instead I gave myself a good detox using a herbal remedy I bought at my local chemist after a good long chat with him and him seeing all my blood test results, or rather it was my endio/digestive systems that got the detox and it worked for me. Yes I still have some health issues, but they are surviving not being on meds and improving well. I have taken Levo for the last 16 yrs now and was diagnosed as being autoimmune last year - Hashimoto's. Perhaps that is also the case for you. Ask for another blood test 6 weeks after you commence a new dosage of Levo. Come back on here, TUK, for advice again a week or two before seeing Doctor and asking for/having the blood test and admins will advise you all you should ask to be tested.

Well I feel oK and am not ill to best of my knowledge but am due my next quarterly blood test for them and will discuss all results with the Haemo when I see him again at end of month, (Annual visit) whilst putting him in the picture as to what I have done over the last year!

So please do go back ASAP and discuss other potential or actual problems with your Doctor, before you do fall into a coma! I am not medically qualified, just explaining what I have done over the last year, fortunately I am still here to tell the tale!

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I already fell into a coma last year and had a cardiac arrest. My GP lowered my thyroxine down to 125gms because she said a 'normal' level could trigger another cardiac arrest. If I went for NHS treatment I would routinely be treated with digoxin to regulate my heart beat but I use Co-enzyme Q10 as an alternative. I ran out of this running up to the cardiac arrest so I don't miss a dose now and all the cardiac symptoms that I have had since a child have virtually vanished

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I'm about to find out I've been taking mine for three years. I lost a lot of weight and gained it back in one year. I stopped for two days now.

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I know that this is an old post but I thought my story might be helpful....before I post this tale I wanted to include that I had stopped taking thyroxine for about a year or so as my GP refused to prescribe it even though I have had thyroid issues since the late 80's and took my thyroxine until I moved to eastbourne.

I started feeling really unwell July 2015....muscle and joint pains...fatigue...carpel tunnel syndrome and fluid retention in all for limbs and my tummy'

Just prior to hospital admission I could no longer chew solid food and was having visual and auditory hallucinations

Back to the story

"I remember my neighbour leaving a parcel with me at home. I was sat in my favourite armchair eating rice pudding out of a tin because at that time I had trouble chewing food. I didn’t know at the time but I had multiple organ failure due to a combination of an unstable thyroid condition and an underlying heart condition (heart failure for more than 20 years).

My next memory was waking up in ICU at Eastbourne District General Hospital. This means I have a total blank of the previous week or so.

I have managed to piece together some of what happened but am unclear of the exact dates. My husband (Billy) called an ambulance on March 10th last year and I travelled to Accident and Emergency with the ambulance crew as Billy was unable to travel due to his own medical issues and his daughter followed the ambulance by taxi with an overnight bag for me. When she found me I was on a trolley in a corridor waiting for a bed while being assessed. More than 12 hours later I was transferred to a cardiac ward where I went into cardiac arrest.

A medical Registrar had been summoned to help out as the staff had no clue what was going on and I had the cardiac arrest in front of him. He performed CPR 3 times but although I was able to breath, I was still very unstable so I was put in a therapeutic coma while they stabilised my condition. At no stage was there a defibrillator available. which I still find strange for a cardiac ward."

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I have been off over a year because I have no insurance to go to the doctor anymore to get my refills and I have no money after the bills to pay cash.. I have now started losing weight rabidly, always dizzy, my hair always comes out and I had long thick hair. My memory is getting worse. I do feel a little more energetic, probably because the weight loss. I was over 230, now in just 4 months or less, I am 172. Nothing taste good, loss of appetite, pressure in my head when I talk, sing or do most Things, gerd, I almost pass out in the hot shower, dry skin, and soo much more.. I'm scared all the time I'm gonna die and I have four sons that I'm raising without their dad. Do not stop taking your meds. I really wish I could afford to go to a doctor and get meds. Be glad you have meds and take them hun..

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Presume you are not in the UK. Is there no free Medicare programme near you. Feel it is important that you get mess?

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