Ive been on 150 levo since 2015 and felt like s**t ever since. 5 weeks ago i made the decision to stop against the advice of my GP and never looked back. Ive never felt this good for a long time. Awaiting results for a tft. Nothing scientific about my decision. Just have had enough of feeling like crap. Feel completely symptom free now. Nearly 6 weeks now and counting. Was expecting to get really unwell but like i said ive never felt so good.
Abrubtly stopping Levo: Ive been on 150 levo... - Thyroid UK
To be honest, I don't find this kind of post very helpful on a forum like this one. Many people here ask questions about how they can get off their meds and the answer is always the same: "If you have developed full-blown hypothyroidism, you cannot".
Your post seems to suggest that you can, and could encourage others to follow your example.
Before posting something like this, I believe you should tell us why you were put on levo in the first place (diagnosis), what your labs looked like back then and what they look like on levo. Also HOW you felt awful on levo.
We often discuss useless doctors here, but then we are talking about doctors who don't understand that patients need to be on thyroid meds. If a doctor tells a patient NOT to go off levo, that tells me the patient in question has hypothyroidism.
Unless you were misdiagnosed with hypothyroidism, so never needed to be on levo in the first place, I doubt your feeling of well-being will last. T4 has a long half-life so all the levo probably has not left your system yet.
'Many people here ask questions about how they can get off their meds and the answer is always the same: "If you have developed full-blown hypothyroidism, you cannot"'
True, but I don't think Cat68 actually intended to encourage others to come off their thyroid medication, just described what happened when she did.
But you are right, we do have to be careful not to give the wrong impression, which is difficult if you haven't come across (in this case) the warnings about coming off thyroid replacement suddenly, however well you may feel at first.
There are several possible reasons why levo doesn't make you feel better:
* You're under-medicated. Happens all the time because doctors are under-educated in matters of the thyroid.
* You have a conversion problem. Levo, T4, the storage hormone, has to be converted into the active hormone, T3, before it can do anything. And, not all of us are very good at that.
* You have sub-optimal nutrients.
* You have low cortisol.
* You have an absorption problem.
* You don't take your levo in the way that gives you optimal absorption.
* You don't do your blood tests correctly so the results say your dose is adequate when it isn't.
* Your doctor isn't doing the right blood tests.
But, to know what the problem is for you, we'd have to see your blood test results and range. So, if you'd like to know more, just post them and let's have a look.
You are of course entitled to your opinion, but I find the administrators here to be very helpful and kind. I have not seen any judgmental answers from anyone here, and my impression is that the administrators fully understand and respect that everyone is different so there is no "one size fits all".
I have been a member of other forums here where it was very different, and administrators could be both rude and lack empathy. One example that comes to mind is a forum where everyone who was not adhering to a strict paleo diet was more or less told it was his or her fault for being overweight...I was shocked at the tone used on that forum compared to this one and since then appreciate the work of the administrators here even more!
Hi I had a similar experience s few years ago. I was so desperate to feel better and not knowledgeable about the condition so I stopped taking levo and felt much much better initially. I posted on the forum and received a very short shocking reply basically telling me that I would induce neurological problems and that in the past women ended up in mental institutions due to lack of medication. I did discuss this with thyroid UK and it was addressed. The response I got was extremely shocking and upsetting. This condition is not widely known about and GPS are often ill informed. I had trusted the medical profession implicitly to that point. I just wanted to point out that gentle positive advice is the best approach for those new to hypothyroidism. Grey goose has been extremely helpful and supportive. ☺️
I then went downhill after about six months. Brain fog, fatigue, confusion, depression etc etc. I did my own research about the neurological issues which were true. Went back to GP for full range of tests and was diagnosed with auto immune hashimotos so put on levo again - the blood tests were so bad that I received a call from an emergency on-call doctor about the low results! (I take 150 mcg now) but also do my own blood tests and get good advice about nutrition and supplementation from this forum. I'm not there yet because I tend to avoid addressing matters (don't like to accept that I'm not well...foolish I know!) but the supplements have helped and I need to get a grip and try gluten free. It was a shock but a wake up call too. From what I've read my thyroid is long gone so this is a permanent condition for life so I have to be responsible and understand it as best I can . I had a very stressful job in my thirties so suspect this triggered the hashis. If I'd been better informed I might have been able to recify things but it's too late now. So my advice is to educate yourself as much as posisble, do your own blood tests and ask the forum. Good luck.
"I posted on the forum and received a very short shocking reply basically telling me that I would induce neurological problems and that in the past women ended up in mental institutions due to lack of medication."
Wow, that was tactless to say the least!!!! There is some truth in it, in the sense that extreme untreated hypothyroidism can eventually cause a form of dementia, but...!!!!
People who post on here, even admin people, are just ordinary people. For the most part not medically trained, and certainly not in the diplomatic service. So, why would you expect people on here to be more tactful than the average Joe you might meet in the street or down the pub? Also, you have to remember that the reason they are on here in the first place is because they are sick and looking for answers themselves. And, being sick doesn't always make for tact.
People who reply to posts asking for help just want to help. They probably have information that they want to share in order to help. Expecting them to also be bright and cheerful, tactful, kind, warm and affectionate is asking a bit much for free, don't you think? No-one gets paid for answering questions on here. We all do it in our free time out of the goodness of our hearts. Often at no little personal cost. You have no idea what is going on in that person's life, quite apart from being sick.
Yes, it's better if everyone can be nice to each other, but some days it's all you can do to keep breathing, so don't expect too much from the other person. If they're reasonably polite, I think that's about as much as you can reasonably expect. Apart from that precious, often life-saving, information, that is.
Just picking up on this. I've also stopped levo and had discussions on another thread with you greygoose.
I missed the bit about having low cortisol as a possible cause of symptoms on levo.
I've had a test before which came out as low at 185. They did a short synacthen test and said it was rising adequeately afterwards so no action, even though it was still low.
Sorry, I must have missed the cortisol.
The problem with the synacthen test is that it's all black and white. No grey areas. And, to be honest, most of us do live in a grey area where adrenals are concerned. Adrenal fatigue. The majority of doctor deny it exists. I was lucky because I found a doctor that suffered from it himself - plus Hashi's. The synacthen test won't tell you if your adrenals are struggling to make their daily quota, just if they respond to excessive stimulus, meaning you don't have Addison's. What you really need is a 24 hour saliva cortisol test. That will tell you how your adrenals are coping throughout the day, without that stimulus. But, you won't get that on the NHS. It would have to be private.
I hope it works for you! That’s a good sign if you feel well after 6 weeks. I’ve tried to go off a few times because like you, I felt awful. Unfortunately after about 3 to 4 weeks I end up feeling worse, so then I go back on it. :-(. I recently switched to Armour Thyroid (NDT). It’s much better but still not perfect. If your levels are good off medication, you should retest in 3 months just to be sure.
Best of heath ,
I'm sorry to say this, but if you feel just as well off meds and your levels look the same after several weeks, you probably were not hypo to begin with.
More generally, there is one thing I don't understand: in recent months, there have been many posts about how to go off meds, how to heal your thyroid back to health...any many seem to believe it's possible. The logical question then is: IF (and that's a big IF) it is indeed possible to cure hypothyroidism so that the thyroid gland can resume its normal function, then why don't doctors know about it? Why is that not the first course of treatment recommended before prescribing thyroid hormone replacement?
What worries me is that if I was a new member here, recently diagnosed and confused, and not feeling well on levo (yet), maybe because I'm not yet optimally dosed or kept on too low a dose for too long (a common problem), and then read posts claiming it's possible to go off meds and live a normal life, I'd probably think: "Yes, great news, I'll stop levo because it's not helping me!"
It's great if a few persons have been able to go off thyroid meds and stay healthy. Unfortunately, I think you are the exception and not the rule.
I think you may need to accept that not everyone sees things the same way. It’s ok I think on this journey to feeling good, to try a multitude of options - switching and changing doses, on and off the meds, I have personally done them all. For me as for you evidently, the real answer lay in being fully and appropriately medicated but it’s a journey and much of the time a ‘try it see’ version at that.
I was Dx with hypothyroidism & Hashimoto's. The body is always wanting to repair itself, if you allow it to and provide the proper & essentials to do so. I'm a nurse, have many years experience with this, I work for general surgeons that perform thyroidectomies, parathyroideconomies on a weekly basis.
The information is out there if you look really hard, but yes otherwise most modern medicine docs do not practice this way.
It's okay to give your body and liver a break or medication holiday to detox, and always let your provider know of course and get retested. So much can change when you do a lifestyle change such as diet, meditation, & exercise. It's just good to know how well or not your body is responding...or not to meds. Chances are, if you're still symptomatic, then the meds are not doing what they're supposed to anyway and the doctors should try to look at the ROOT of the problem, instead of masking the symptoms.
In my case, it's a virus that causes flare ups and attacks my thyroid...so I started treating the ROOT problem instead of covering it up and allowing the viruses to do more damage.
Read Medical Medium, there's much truth in what he professes regardless of how extreme it may come off. Just depends on your perception, and understanding of the knowledge described. The results do not lie, thousands have found relief & gotten their lives back. It's amazing!
Being skeptical only holds people back from making any progress at all. Idon't never gave up searching and trying new things bc I never believed I was doomed and I knew I could beat the fatigue, depression, hair loss, itchy skin, raynauds, neuropathy, etc...
What works for me, may or may not work for someone else, I never prescribe someone to do what I've done, I simply explain what I've tried and what works for me. Ppl can do what they wish with the info and discuss it with their docs. My doctors have been fully supportive, and monitor me for changes in levels. They said they feel no need to continue treating it, unless levels were to become very abnormal or symptoms come back. I'm happy with this plan.
I am on 200mcg of Levothyroxine...Took a while to get to this dose. After presenting at hospital, it was discovered that I had a TSH of 148. I had been feeling extremely unwell for several years, but my doctors could find nothing. At the dose of 200 my doctor says that my TSH now reads as normal and that I am optimally medicated.....This in no way feels optimal.
Can you post your blood results on a new thread? 200 is fairly high, but no way are you optimally medicated. Has there been any improvement at all with increased thyroxine? You may be a poor converter of T4 to T3 for example. When the doctor says your results are OK, he just means in range, which may well not be OK for you!
Also you would need to make sure vitamins and minerals are optimal. Especially iron, folate and vitamins B12 and D3 which are often low in hypothyroidism
How long have you been on 25 mcg? It's a low starting dose, usually prescribed to elderly people, children, and people with heart conditions. A normal starting dose is 50 mcg.
If you've been on 25 mcg for more than a few weeks, no wonder you feel bad.
A common mistake doctors make is to keep patients on a starting dose for too long.
So true, my docs kept me on 25mcg for 3 years or more (can’t remember). I have been asking for an increase for over a year and finally got one 2 weeks ago after taking my basal temp chart and my hubby to the appt. I was so relieved that she agreed to the increase I cried, then she focused on that and tried to give me anti-depressants, lol. Told her I’m not depressed, just glad to have an increase and frustrated with the docs who refuse to give me increased dose even though I’ve felt and looked like crap for so long. I’ve now been taking 50mcg for two weeks and feel tons better - I even did some cleaning this week and my basal temp has reached the bottom line in Dr Rinds chart....yay, I’m not hypothermic when I wake up any more
Another reason for feeling worse initially is that the thyroid sometimes responds to a low dose of thyroxine by decreasing its own production, which leaves you worse off. It should be tested and increased every 6-8 weeks until you begin to feel better. Or perhaps the brand you were given doesn't suit you.
The usual pattern I experienced was that I would feel better - usually after a week or two, then after a few more weeks there would be a decline. But that merely means you need another increase.
Please do NOT stop taking the thyroxine. This needs a lot of patience and ups and downs before beginning to feel well Cat68 may not have expressed her concerns very tactfully (It's difficult to make oneself clear with only typed words to go by) but she IS correct.
If you have hypothyroidism you can not manage without some kind of replacement hormone, even if you feel better at first. 25mcg is a tiny starting dose. Most of us eventually need 100 or more. Hang on in there and hopefully.
Start a new thread and post your results on here. "Borderline" doesn't mean a thing, except you are hypothyroid but not quite hypothyroid enough for an official diagnosis.
Most doctors don't understand that the lab reference ranges are not necessarily anything like our individual (much narrower) ranges of where we are OK.
You could ask for a "Trial increase" of thyroxine. I always say that "Trial" means you can't sue the doctor if it doesn't work! Even 50mcg is well below what most people need, but may help you to at least feel a bit better.
If I was not very diplomatic in my original reply, it's partly because this is one of several posts I've seen here lately where people seem to reject the idea that they have a chronic condition requiring life-long treatment. I've seen quite a few posts about going off thyroid meds and trying to heal the thyroid gland back to health using various methods.
As others have pointed out, more than 90% of all hypothyroid people have Hashimoto's which means they need life-long thyroid hormone replacement. I like Greygoose's comparison with water and air.
I don't think we should see thyroid hormone as a drug as in "foreign substance my body doesn't recognise" because thyroid hormone is the very opposite. The body cannot live without it and cannot tell the difference between what we are taking and what our own thyroids produce day in and day out throughout our entire lives.
If we don't feel well on levo, we should try to understand why instead of concluding thyroid hormone replacement is not for us. Just going off it is hardly ever the solution, and while I wish the OP the best of luck on her journey, I was just afraid others will be encouraged by her post to go off their meds as well, without necessarily understanding the likely consequences.
The problem is not that we need thyroid hormone replacement. The difficulty is finding what works for each individual. Some do great on levo. Others need levo + T3. Some take levo + NDT, NDT + T3, or NDT only. I have even come upon people who combine all three. Some feel best on T3 only.
Finding what works for each and every one of us can be both time-consuming and challenging. Doctors are often useless as they only know about levo and believe all you need is a TSH anywhere in range. That, in my own experience, is the reason so many thyroid patients are left struggling on levo only, NOT because they don't need to be on any kind of thyroid hormone replacement.
A more general comment to everyone:
If a person is put on levothyroxine without really needing it (so euthyroid), would not symptoms on levo be more HYPER symptoms such as increased metabolism, racing heart, nervousness, increased sweating, insomnia, weight loss etc?
Someone here mentioned "feeling like a living dead" on levo. To me , that suggests being under medicated or T3 deficient or any of the other reasons Greygoose mentions in her post, but NOT being euthyroid in the first place.
Oh dear! If you are hypothyroid than stopping it is the worst thing you can do. ESPECIALLY stopping it suddenly when on such a high dose.
You probably do feel great because there's still a lot of T4 in your system and your thyroid is still able to up conversion to T3, and is going all out to compensate for the decrease. But it can't last.
If you think you are overmedicated you could decrease slightly - by no more than 25mcg. If Eltroxin is the same as levothyroxine that is.
See what Cat68 meant now. Except in rare cases, such as going hypo because of an infection or connected with having children, thyroid replacement is for life. greygoose maybe you can explain this better than me
I was just going to type what you have written Jnetti.
Anyone who is posting about discontinuing medicines: Please post your initial results on which you were started on Thyroid medication, the test before you stopped the medication and a blood test at least 6 weeks after you stopping the treatment.
How one feels is an indicator of the thyroid status, but is not the full story.
You have to look at how you feel in conjunction with what your blood tests are.
99.9% of Hashimoto's thyroiditis patients will need to take thyroid replacement for the rest of their life.
A very small number of patients has Hashitoxicosis- Which swings between hypothyroidism, Hyperthyroidism and normal thyroid levels. THese people needs careful and frequent monitoring. This condition is very very rare.
The patients who usually are able to stop succefully are patients with other forms of thyroiditis especially thyroiditis after pregnancy.
Each of us are different.
So in order for anyone to make a judgement, they need to know the full picture.
I think you've done a pretty good job. And, in any case, there are explanations all over this forum of why stopping your thyroid hormone replacement is a really bad idea because you cannot live without it. T3 is needed by every single cell in your body to function correctly. That is to say the cells in your heart and your liver and your brain, etc. Activity will slowly grind to a halt if they don't get enough T3, which I'm sure you can imagine is not good.
If your thyroid is not capable of making sufficient thyroid hormone, for whatever reason, then you have to replace it in some way or other. It's not an option, it's a necessity. Levo may not be for you - it isn't for everybody, although some people do very well on it - but there are alternatives which you need to investigate. Alternatively, you need to investigate why you didn't do well with levo - there's usually a reason. But, you cant just stop and hope to survive for very long. Thyroid hormones are as necessary for the body as air and water. You wouldn't just give them up, would you?
Thankyou Ladybex...This indeed is the Million Dollar Question. After relentless pleading with my doctor, he approved a trial of T3, I was just starting to feel marginally better on it when he withdrew it, stating that he is not permitted to continue prescribing it for me. I visited numerous other doctors with the same result. Even though I also take probiotics and numerous other supplements, am vigilant with a gluten free diet.. I continue to feel dreadful.
The measure of success should be when you are symptom free, which doesn't come with a magic TSH number. This forum is a life saver (literally in my case) and you'll find all the information on here to safely look after yourself. You felt better on T3 so a positive step could be posting your thyroid results on this forum and finding out where you can obtain liothyronine. I’ve noticed a web site called Thyroid Change which has a list of Australian doctors willing to give you a full thyroid test and prescribe T3 and NDT, it might be a place to start. thyroidchange.org/patient-r... Good luck.
[ Edited by admin to remove the full stop at the end of the link. That gets treated as paert of the link and means it won't work. ]
Billa786, I'm not sure this has been emphasized enough, but your experience is very common. Many people will feel a short term improvement when abruptly stopping thyroid hormone, no one knows why this is. Unfortunately if you need thyroid hormone replacement this is a short term feeling and eventually symptoms will start creeping back.
Not a great idea as I did the same and felt great for a short time but then my face started to swell, skin was getting more wrinkley and dry, my body started to slow down until my Gp could not detect a propher pulse, my heat beats were getting slower and I got so so tired and sluggish, I stayed off them for about 5_6 months ,I decided to go back on them as the result of not taken them could lead to death. Sorry if you find this brutal but I live from experience.
i agree completely with @Cat68. when we join a forum such as this, we are (or should be) on our guard for snake oil salesmen and hippydippies. This forum largely swerves anything that isnt well researched, or at least well thought out. and therefore care has to taken to keep it this way (i also noticed some similar recent posts). btw im NOT saying OP or others are aforementioned hippydippiez.
Your call out to Cat68 won't work - you typed the right things but you MUST click on the person's name in the list that is displayed.