Has anyone stopped levothyroxine and know how long it takes to clear your system if you were on 125 daily. Can't wait for endo appointment next month.
Feeling dreadful : Has anyone stopped... - Thyroid UK
Feeling dreadful
Written by
Dryski
To view profiles and participate in discussions please or .
Read more about...
73 Replies
•
half life of T4 is about 7 days ...meaning :
after 7 days half of the 125mcg is gone .... so about 62mcg remaining.
after another 7 days half of that is gone ... so about 31mcg remaining.
after another 7 days half of that is gone ...so about 15 mcg remaining.
etc.
etc.
However, if Dryski has any capability of producing T4, it won't drop quite like that.
And I'm a bit lost off if it is specifically Teva levothyroxine that is the problem?
And what is going to happen at the point at which it has cleared the system? A state of profound and potentially dangerous hypothyroidism.
A Review of the Pharmacokinetics of Levothyroxine for the Treatment of Hypothyroidism
ncbi.nlm.nih.gov/pmc/articl...
I was on lannett levothyroxine which is levoxyl and it caused my a1c to skyrocket. My gp agreed to stop it completely for two months till I see an endo. I'm three weeks off of it and very tired and shaky. Brain fog comes and goes even with massive sleep. Another month is going to be a challenge. Gp disagrees with my previous dx of secondary hypo and says it's just subclinical now and doesn't need medication anymore. If I would have known how rough cold turkey would be I would have refused.
I can't make sense of "lannett levothyroxine which is levoxyl". Am I getting the wrong end of a stick?
Lannett levothyroxine tablets:
dailymed.nlm.nih.gov/dailym...
Pfizer Levoxyl tablets:
Hi Dryski, l'm shocked your doctor has told you to completely stop just like that. I'm now in my 60's but reason I had to have a total thyroidectomy at 41 was because after going to A&E and being told they think I have Graves Disease, they took blood tests, told me they'd call me back in approx 6 to 8 weeks for another blood test. Went home with prescription for a VERY overactive thyroid. I was on very high dose plus beta blockers for almost 6 months as heard nothing back from hospital and started becoming VERY underactive. Had no idea who to contact. Thinking back how stupid I was not to speak to GP.. but had my very young daughter, working.. but couldn't think straight. Eventually husband got hospital contact. Basically I'd been forgotten. When I eventually got seen, they told me to halve my dose of Carbimizole (for hyper), then rang me two days later with results and said actually come completely off drugs.. Well that caused me to swing back and forth from very under to very over. Was terrible. Experienced all symptoms. Was off work. Since read that thyroid meds should only be adjusted in small increments because it can cause levels to swing. So be careful coming straight off. This is my experience and I can tell you I had a whole year of feeling terrible and hair falling out in handfuls at one point, feeling sooo weird, then body aches and pains like an elderly person.. So just be careful stopping meds completely
• in reply toDryski
Stopping a drug suddenly like that is a massive shock to your system. What on earth was your GP thinking?? Whether you need it or not, you should taper it off gradually.
I have sub clinical hypothyroidism and still require thyroxine, now on 100mcg. This still needs treatment if you’re having symptoms. Hope your get it sorted and start to feel better there is nothing worse than feeling like that. X
Thankyou. Going on fourth week so I can't have any back up left. After 15 years I don't believe my thyroid is coming back to life.
Just out of curiosity: how did your doctor conclude you ’only’ have subclinical hypothyroidism? Once on thyroid hormone replacement, you cannot tell.
I honestly havnt a clue.
Why were you put on levothyroxine in the first place? Autoimmune thyroiditis (Hashimotos) or another diagnosis? On the basis of which lab results were you prescribed levo? And why do you want to come off it?
A few years ago, I consulted a naturopath who told me that most people are put on thyroid hormone without needing it. I was prescribed some tincture to ’heal’ my thyroid condition (Hashimotos) while weaning off levo.
After six weeks off meds, my TSH had gone from 1 to 29, and my free Ts were nearly undetectable. Needless to say I went back on thyroid meds asap. A couple of months later, un ultrasound showed an atrophied thyroid gland. Meaning I should never have come off thyroid hormone in the first place.
I'm very wary of anyone who tells me that thyroid disorders can be treated by wishful thinking, tinctures, homeopathy, magic beans or consulting an Oracle. Certainly here in the UK it is incredibly difficult to get put on thyroid meds in the first place, so much so I would hazard a guess and say we under diagnose patients, not over diagnose. Many GP's wont treat until TSH is 10.
There may be those with transient thyroid disorders who may not need lifelong treatment but they are in a minority.
I can see why many patients would choose to believe it, no one wants to take lifetime meds unless they need to but I feel some of these " alternative" practitioners are really preying on desperate people.
There really should be some stronger rules that give the consumer more rights. Alternative medicine can seem like the Wild West, there is very little regulation or comeback.
I agree, and that is why I decided to write about my own failure to come off thyroid hormone replacement.
I'm being told to go three months off before they will retest. Pretty scary. Hope endo disagrees and no diabetes either. I think the a1c was a false call due to being overmedicated.
Gp disagrees with my previous dx of secondary hypo and says it's just subclinical now and doesn't need medication anymore.
That sounds very weird. Even if it's subclinical it still needs 'medication'. What's more, it's only reached subclinical levels because of the 'medication'. And, in any case, how can he possibly tell whilst you're on the 'medication'? He's talking out of the back of his hat!
Surely he has your medical records that show your levels when you're levels at diagnosis, no? I realise that he's probably only going by the TSH, but if you have Secondary hypo, the Frees must have been pretty low, and the TSH is meaningless in that case.
I think he needs a stiff talking to! He's making you ill for no good reason - probably because he doesn't like the cost of continuing to treat you. And, of course, you do understand that with Secondary Hypo your TSH will never rise high enough to please him, so your thyroid may never start working again. It cannot work without the stimulus of the TSH. So, are you going to allow yourself to go into myxedema coma just because of this idiot? He's doing something very, very dangerous, and if I were you, I'd complain to the practice manager.
By the way, do you have your blood test results from diagnosis? Who diagnosed you?
My original doctor retired 10 years ago and most of his records were files and now these are new people connected to the hospital. I agree with you this does not make sense and I feel I'm being pushed off. I don't have copies from back then I sadly trusted and didn't keep records like I should have. Their new computer doesn't seem to have my history complete either. I do have some records but they want to retest everything it seems like. I feel several phone calls coming on in my future. My endo is next month so just have to hope for the best. I am off medication three weeks now and he wants me off three months to basically start over from scratch. I told him mine was secondary and the tsh cannot be relied on. He didn't like that to begin with so now he's doing it over.
He's an idiot. And a dangerous one! Is there no-one else you can see?
So, your endo basically wants you to prove that you are hypothyroid?!
I do not think you can be have both secondary hypothyroidism and subclinical hypothyroidism. In the first case, there is not enough TSH produced by the pituitary gland for the thyroid to produce enough hormones. Both the TSH and the FTs will be low. Subclinical hypothyroidism is the pre-stage of primary hypothyroidism, when the thyroid begins to fail. In subclinical hypo, your TSH is somewhat elevated (between 5 and 10) but your free Ts are still in range.
I cannot see how these two conditions can co-exist, as one is due to pituitary dysfunction and the other to thyroid failure …!
It would seem your doctor is conducting an illegal and dangerous medical experiment on you which could make you very sick!
I was wondering if it was legal to do that. How can one find out?
I would also like to know that! Maybe helvella knows?
I remember reading about a study here a few months ago where doctors were looking for participants to go off levo for 12 weeks. There was some discussion back then whether it was illegal or just unethical.
I don't know anything about USA law.
Ahhh, I hadn't realised the OP was in the US. Somehow it just all sounds like a UK situation.
I did not know that either! Since the OP used the word ’GP’, I just assumed s/he is in the UK.
Me too.
I thought the same Greygoose......lol.
They were still in range on medication but if they hold without is the question. Original doctor said secondary and meds for life. Not sure why it's being questioned now but a good review will be interesting.
I'm really worried for you. Doctors are usually more scared of a thyroid storm than myxedema. The chances of dying are equally high for both, but apparently the former weighs much higher in doctors' concerns. In my neighbourhood 2 people had myxedema, a young mother and an elderly lady. Both were hospitalized and the elderly lady died. The young mom lived, but went through a heck of a time. She was very ill for months (till the meds kicked in, I assume). As far as I'm concerned that doctor is playing with your life. He seems to be flying blind. Not knowing what exactly was discussed and what your bloodwork was etc., but from experience knowing that there are very few doctors who are truly familiar with thyroid issues, I fear that your doctor's decision could have very detrimental consequences, immediate and in the future.
I don’t think there is a “start over from scratch” once on thyroid hormones and the longer you are on them, the more the body adapts to them good or bad!
This is a crazy idea from some very poorly based research but it is becoming very much a ‘thing’. It’s endos on a mission. It can only be about cost or ignorance. Combined its very potent and entirely anti-patient. It would save about £150k by just getting rid of the doctor, rather than our paltry Levo prescriptions.
GG wonders whether it’s legal. Well if they get your agreement (the poor ignorant patient) it will be legal. It’s ’Catch 22” for the poor patient. You think the doctor has your best interests at heart so you comply but this means giving you very little comeback. It’s utter negligence on their part but I for one do not have the stamina to get our horrendous treatment sorted.
One minute they want us to help ourselves via complying with our medication, eat well, don’t drink or smoke, take exercise etc etc. However beware challenging these idiots, suddenly you are being accused of non-compliance and it’s all your fault AGAIN.
as uusual----- sense from GG and since when is a general practitioner fullly adversed proficient or whatever you wanna call it in a specialist complex health condition as endocrine, if they WERE they would BE endocrinologists, even endo's themselves never appear to get it all right --- if ever .. so wow the GP mentioned above must be an absolute whiz master... no wonder Helevella was confused as well....
Doubt it can be cost as the reason.....I read levothyroxine only costs about £4 per 28tabs.......suspect main reason why its the only treatment on the nhs allowed in many areas of England now.
This GP sounds very ignorant and what he is doing is dangerous! At the least he is creating a bigger mess for the Endo to try to untangle. And he could jeapodisw your life. I would make contact the GP surgery and tell them how ill you are after three weeks.....in writing and ask for your thyroid replacement to be reinstated until you are seen. If the GP refuses complain to practise manager and put a complaint into the GMC!
It's not just the cost of the levo, though, is it? There's also the free prescriptions that hypos get. It all adds up when you're on a tight budget.
Every NHS patient in the UK but not in England gets "free" prescriptions!
And an almighty proportion of those in England actually have exemption from prescription charges for another reason - age, pregnancy, certain benefits, etc.
And Dryski is, I think, in the USA!
True. I'm still hypo whether on levo or not, nhs treatment or not. And older so still get free prescriptions though am sure thry have their eye on that one too.....so hush barely dare mention it.....
The official NHS cost of some levothyroxine tablet products is just 69p for 28. There are, of course, additional costs of admin, dispensing fees, etc., so that is not the entire cost.
Whatever it is its definitely cheap as chips!! No coincidence that that's the one still on the nhs....
When I was diagnosed as hypothyroid 16 years ago, it was a pure accident as a byproduct of a blood test for a urinary infection. I never saw the results of the blood test or was asked about any symptoms I had. As far as I was concerned, I didn't have any symptoms of hypothyroidism but I sure got sick after taking Levothyroxine! It put me into a 'brain fog' for three years!
Looking back on it, I think my ignorance about the condition was due to the GP, who told me absolutely nothing about it except to say I had an underactive thyroid! With hindsight, I can now identify, almost exactly when my thyroid lost the plot, due I think, to extreme stress some six years before being diagnosed. So I lived with hypothyroidism for six years before being 'treated', which might explain my extreme reaction to the synthetic hormone?
I empathise with you Dryski. I am currently, after seven weeks, looking forward to my next Thyroid function test. I am hoping my dose will be upped a bit again. I have had an underactive thyroid for 29yrs, but recently my TSH had been very low even though I was still in the top end of the acceptable range. Dropping right down to 50mcg from 125mcg over a year had a big impact on how I have been feeling. I felt awful for the first two and a half weeks and it took me a month to regain any kind of energy! I am slowly getting back a little of my 'get up and go' but I'm not feeling back to normal yet. I know that mine is autoimmune because I was told that I had the proteins showing up in my blood four years before I needed Thyroxine. Hope you will soon get stabilised on the correct dose for you. Take care.
If you have some thyroid hormones left I suggest you start taking them again. It is dangerous to stop and your GP has ill advised you.
In your last post you said you were on a mission to try to get off Levo, and hoping that that would correct your increasing blood sugar.
You said you got your doctor to agree, not that he made you do it?
Can’t you start Levo again to avoid a dangerous progression of your symptoms right now?
Or do you still want to see what happens if you stay off until your next appointment?
He agreed for me to stop because of over medicated and high a1c. Waiting for endo appointment next month. I won't restart without permission from doctor or endo.
Thank you for pointing this out! In fact, the OP recently warned people about levo’s effects on blood sugar:
healthunlocked.com/thyroidu...
No mention there of any doctor ordering him/her to go off levo, but rather the OP choosing to go off it to lower blood sugar levels.
Hi again Dryski, sorry you’re feeling so poorly. As per previous post I still suggest you need to know your blood results both recent and older in your thyroid journey. You are entitled to them and it isn’t good enough for your GP to know them and not share them with you in fact it’s a big red flag given how they seem to have treated you.
Synthroid (levothyroxine) typically has a half-life of around 7 days, meaning it takes about a week for half of the drug to be eliminated from your system. However, it can take several weeks for it to be completely cleared from your body.
Yes I asked to see endo in the hope of getting some T3. He didn’t believe I had a problem!! Didn’t refer to my notes. Following an agenda of his own? (I was and am again on 100mg) Endo asked me to stop for six weeks. Very, very bad idea. It only took about two weeks to begin to go downhill. Then total collapse. I was stupid to agree. So whatever reason you’re doing it for be careful, it’s taken me a long time to get back to where I was to start with.
here's a link to a post from 4 months ago , there are lots of comments on it from people who've had experience of stopping levo while under instruction of GP/Endo. ( mostly 'not good' )
healthunlocked.com/thyroidu... official-trial-for-patients-to-stop-their-thyroxine-for-6-weeks.-has-anyone-done-this
Find a new GP (you can change numerous times on Medicare) and/or do private testing following the protocols recommended on this site.
Stopping completely is likely to send you in a downward spiral that will be very difficult to recover from.
I’m confused. I’m not sure why you need to stop an essential medication? Why were you prescribed it if not for an underactive thyroid? You’ll surely become severely hypo (which I’ve been after RAI) and that takes a long time to recover from. Please take care and get back to your GP and describe your symptoms.
I became overmedicated from several generic levothyroxines being switched which caused high a1c. He agreed for me to stop so we can decide along with an endo next month how to move forward. Not sure if levothyroxine caused high blood sugar or true diabetes. I'm basically starting over. Also want clarity on diagnosis. I was told it was secondary hypothyroidism from previous physician and now they say it's just subclinical. I want answers. Thanks for concern. Endo appointment next month but gp is here if I need him. I don't just want to add a sugar pill to thyroid without sorting it out first. I'm tired of the pill pyramid and being a poly pharmacy.
I think this thread is quite misleading. First of all, you should update your profile to include your location. Otherwise, people will assume you are in the UK and base their advice on that.
Secondly, you make it sound in your first post like you were told by your doctor to go off levo. However, it is clear from your previous thread that you chose to go off levo to lower blood sugar levels. Now, you say your doctor ’agreed for you to stop’ which is not the same thing as ordering you to stop.
Then, you say you are not starting levo again without permission. Permission from whom as you were the one who decided to stop it?!
TBH, I feel that you are misleading people and taking advantage of their kindness and willingness to help.
I misled no one. Thanks for your replies and personal opinion but don't reply in future if you choose to be rude.
Sunflower64 sums up how I feel about this as well.
You should be clear about being in the US - we don’t use the term GP here, and we don’t use the word “dreadful” and it all feels deceptive. Medicare covers Levothyroxine. The US healthcare system doesn’t withhold Levo and it doesn’t have the rigid thresholds for diagnosis and dosing that most of those replying to this thread are assuming.
You have chosen to go off your Levothyroxine- and you have your reasons. But your doctor has little to do with it.
All the advice given here is completely in your power to take. Medicare doesn’t compare to the struggles of those in the UK and everyone on this thread is roped into worrying about you as if it does.
Again - no one here faults anyone for the decisions we make for ourselves. But a lot of caring people have taken a lot of time replying based on misperceptions.
No need to be rude. Previous post I did clarify I'm in US and my insurance did not cover any choice but Teva in my area. No misperceptions involved. I was taken off of levo because I was over treated which caused the high blood sugar and by my doctors choice. Sorry if I some how upset anyone on your end. Get over it. You have no idea of the struggles in our US health care and just having insurance doesn't mean we are taken care of any better.
Hello. My last levothyroxine 50mcg was March 17 2024. Feeling great!! Besides slow heart rate and TSH of 11.87 🤷♀️. I have been medicated(Levo 100/175/112/88/50mcg) for 29 yrs. Smh! The first 8 days are a struggle for those who may not have strong will power and no faith. But as time goes by, you feel the difference. (Might be different for each person). I read it takes 4 months to leave the system. (Keep praying for wisdom and a decision on what to do).
The response of an individual's HPT axis to the sudden removal of all thyroid hormone replacement is not a matter of will power , or faith , and i think you should be careful not to present it as such.
It depends on the individual. So many have been Healed because of THEIR Faith, etc. I am aware some people have no faith. But the same way a person has their perspective or positive experience and what not, I too can share my perspective. Let us stay on the point, please. She/he is on the same boat as I am in regards to Weening off of Levo. I am not telling her/him how to proceed, but I shared my testimony..
Have you had a scan of your thyroid to see that it might be capable of producing hormone again? Chances are it has withered to nothing after so many unproductive years... I'm all for a bit of positive thinking but existing with low thyroid hormones will make you a bit doolally and likely to make unwise choices
Please people. I'm under doctors care and have an endo appointment next month for them to decide on scans etc. The situation is being watched. I'm not taking it without precautions. Thanks for all concerned. Best wishes to all of you on your journey with these problems. I really appreciate all yor concerns and advice.
It's the 'under doctors care' that worries most of us as so many are incompetent... could they not bring the scan forward as this is a back to front route you are on?
Our appoints here in the USA are really back logged since covid and shortage of doctors hasn't helped issues. I am on a list in case something opens sooner. It is what it is. Emergency care is always out there if needed.
WarriorPebbles77 'So many have been Healed because of THEIR Faith, etc. I am aware some people have no faith'
Thyroid hormone is as essential to life as food and drink. If it turns out that your thyroid is unable to produce the appropriate amount of thyroid hormone, no amount of 'faith' will heal it. Just as the body cannot survive indefinitely without sufficient food and drink, so the body cannot survive indefintely without sufficient thyroid hormone.
True. I had a TBI at age 6. Which could have damaged the Hypothalamus, etc. I am tired of adverse side effects of Levothyroxine for those 29 yrs.
Thank you for the feedback.
I came off 100mcg after 30 years and never felt better my GP knows and is happy as an ex nurse I was fed up of the messing about with ingredients and who produces them x they made me do ill !!! I take multivits and mins now my head is clear and I function great three months have past and my GP is monitoring me xxx I also have a great faith that I have done the right thing as I am so angry at how patients are being fobbed off not only here but in every area of health care xxx one med increases to another until our bodies are so confused xxx my opinion only
Sigh&Smile. : ) Very similar situation as mine. Thank you for sharing! I am weened off 2 months now and rejecting any false thoughts that we create or believe about being medicated. Yes, same here the mental clarity is pleasant. Screw racy thoughts and brain fog for 29 yrs. Ha. Keep going and stay well. Truly appreciate the testimony!! Xxx
you are soo welcome 🙏🏻
I agree. I was ok with things for years on the same meds until my pharmacy was allowed to switch brands or generics every time they had a different kind. They don't realize what those extra ingredients do to people on a constant basis. Personally I am trying to get off this mess and if possible not look back.
I was told once you are on Levothyroxine you stay on it, my sister would not take it for a year and felt terrible. I am on 125 and have been on the same dose for years.
Hi! Yes they tell us that..to stay on it. We must learn when our body/system speaks to us(so to speak). Doctors do not know how we feel internally. I understand it is different for each of us. 125 for me had me extra anxious, more headaches, diarrhea at times, agitation ugh, insomnia, etc. My body learned what to except and what to reject. Js. Pray on the decision (if you are of the faith). Thank you for sharing! Best of luck!
Apologies if I've got this wrong
From personal experience, when going from t4 to t3 I had to wait 12 weeks for t4 to clear my system for t3 to work. That involved a lot of trial and error I was very ill and bedridden. Had to do this on more than one occasion too.
I really wouldn't recommend what you're doing because your hba1c levels have increased. Stay on your thyroid meds and look at other ways to help reduce.
I was told pre diabetic with all the raised levels of everything connected to thyroid, basically have/ had metabolic syndrome. You need to find alternatives to combat this issue, it can be part and parcel of thyroid issues and not because of the medication.
Hope that helps a bit
Not what you're looking for?
You may also like...
Feeling dreadful
Feeling ill for months now doctors refused bloods months ago as he said they were fine last July...
Feeling dreadful
Feeling dreadful
I have been on a 75 dose of Thyroxine for many years, I now live in Canaries no...
Thyroxine lowered - feeling dreadful!
Hi all, I was diagnosed with an underactive thyroid 20 years ago. I went to see my GP to have a...
dreadful itching….suggestions?
This used to happen every so often but now it is all the time. My lower legs itch until I want to...
Feeling Dreadful -don't know which way to turn now!
Firstly apologies for the long post --
I had a hip replacement 2 months ago, since then I have...
Naturethroid new batch - dreadful
Bloods fine but feel dreadful
Borderline results but feel dreadful!
Bloods all 'Normal' but feel dreadful
