I have stopped taking Levothyroxine for a month now and my pulse and BP are elevated has anyone successfully quit this drug?

I was on .75mcg for 8-9 months with no noticeable side effects that is one day my BP and pulse just went up unpredictably and I immediately quit this drug after I read all the side effects other people were suffering. I felt great for two weeks and then I started to have fatigue, high BP and pulse. My withdrawal symptoms go away and then they come back scary. I have high TSH but I had high TSH even before I went on this medicine but I was fine and never had elevated blood pressure or high pulse before. I took this "medicine" without doing any research and now I feel like I have corrupted my health for good. Anyone else out there feeling this way?

18 Replies

  • What sort of medical supervision are you having and what, if anything, has your GP said about you coming of your levo? and where did you read "all the side effects other people were suffering".

    Moggie x

  • I am in the US the GP here just backed off from doing anything more and referred me to Endocrinology specialist. I visited the specialist last week, they took my blood and are going to measure TSH free T3 and several other things, and I am going to see her again today for my results. But her very first statement makes me wonder about the motivation of not just this doctor but everyone else who says this is simply a synthetic hormone and has absolutely no side effects when there is a mountain of websites dedicated to patients suffering from Levothyroxine side effects.

  • Could you please explain what side effects you are worrying about - yes there are some side effects like hair lose and weight gain on levo BUT the side effects of an untreated under active thyroid can be much much worse and can also be dangerous. I was under medicated a few months back and my hypo symptoms where horrendous. If you have Hashimotos then your symptoms will only progress as your body continues to attack the thyroid gland.

    Moggie x

    p.s. If you use the "reply to this" button under my name I will get an email to say you have answered me - it just stops people missing your answers or further questions.

  • The only side effects I had when I was on Levo were elevated BP, high pulse, paranoia, a sensation in brains sometimes I felt like I could feel every nerve every artery the blood was flowing through, scarier was sometimes I felt like there was a blockage sort of when the blood would flow through in my head. I stopped taking the medication because I got dizzy and almost fell to the floor like I was drunk. Here is the thing I am 44 but I have always been in good health and great strength. Reason I stayed of Levo is because of how good I felt for the next week or two. According to my Endo-Specialist (which she only said in passing) was that the only side effect of high TSH is weight gain at best. But now that I am experiencing all these symptoms I am not sure what the diagnosis is going to turn out. I dont have all the facts I am hopeful for right now as this is all very new to me. I have read several reports where patients who lost weight after bariatric surgery and had high TSH before were able to normalize their TSH levels. I certainly could lose 15-20 lbs and become less sedentary. I thank you for your insightful response.

  • Oh wow Ive been trying to explain the same feeling you experience with the blood flowing through every part of your body. Its so weird, I only get it when I am in bed and it causes me problems and complete restless night. I only get it in my legs, but its so weird and freaky. It does scare me, its not every night tho, say around once every 2 weeks or so, I too wonder what it is.

    Please dont stop your meds tho it is extremely dangerous and can cause more problems. With some tweaking you will get the right dosage - sometimes it takes a little longer to see whats right for you.

    Best of luck

    Mandy x

  • Thank you for your kindness and empathy. And above all thanks for sharing.

  • StLouis, Levo is not a 'drug' and you do not have withdrawal symptoms. You have an underactive thyroid, with the symptos of underactive thyroid, for which you were being treated with a synthetic hormone. Of course you have a high TSH and you had it before, that's why your doctor put you on Levo!

    Any side-effects you suffered were not from the hormone itself, hormones don't have side-effects when they are given in the correct dosage, but from the fillers in the pill. However, there are always alternatives which is what you should be seeking rather than coming off thyroxine (the name of the hormone contained in the pill) altogether. What possible motivation could they possibly have? Do you know that paranoia is a symptom of hypo?

    What I suggest you do is calm down and trust this new endo you are seeing - until proof to the contrary, at least. You have not corrupted your health, but you will if you don't take your hormone. By the way, you don't tell us what her first statement was that filled you so full of dread? I would be interested to know.

    Come on now, take it easy, getting yourself in a state is only going to make things worse. There is no conspiracy where levo is concerned. Or if you really don't believe that, ask for Armour or some other NDT. They are natural, not synthetic. But you've got to take something or you are going to make yourself ill. And none of us want that!

    Hugs, Grey

  • Thank you I have been so hormonal and crying afraid to live or die your response was very helpful. I am so tired of living this way it has only been 4 weeks I have lost 5lbs and sometimes I have been nauseous for more than a day, my pulse and blood pressure go up and down like a merry go round. I fear the worst. However, I did have paranoia when I was on the drug, my fear of bugs and reptiles was amplified, dont have that right now. What is NDT by the way ? I have heard of Armour.

  • Armour is an NDT (Natural Desicated Thyroid). there are several of them. Naturthroid is another and so is Thiroyd. They contain all the hormones : T4, T3, T2, T1 and calcitonin - which is needed to control calcium levels. So a lot of people feel better on NDTs than they do on Levo which is just T4.

    I'm not surprised you feel hormonal and weepy and afraid for your life. I've been that way too. But the only way to get over it is to get some thyroid hormone into you!

    And, again, I'm not surprised that you felt your paranoia and phobias more when you were on levo because you weren't on the right dose for you. 75 mcg is just a teeny-weeny starting dose. You shouldn't have been left on it for so long. You should have been tested after 6 weeks, to see how you were getting on, and the dose increased by 25 mcg. And that process should go on until all your symtoms are gone.

    But as I've said before, levo might not agree with you, it doesn't agree with everyone, and so you won't do well on it. But if that is the case, ask for Armour or something.

    Would would really help us to help you, is if you post your blood test results on here when you get them - with the ranges - and then we can see what's going on. Can you do that?

    Hugs, Grey

  • Forgot to say, your endo wasn't telling you the truth when she said that the 'only side-effect' of high TSH was weight gain at best. Either she was lying to you or she is very ignorant.

    TSH is a (not very good) measure of thyroid status. When it is high it means that the thyroid is not producing enough hormone for your body's needs, which is called hypothyroidism. And there are hundreds of symptoms of hypothyroidism : weight-gain certainly, but sometimes weight-loss; thinning hair, depression, fatigue; stomach upsets and bad digestion; high or low blood pressure; constipation. These are just the main ones but there are many, many more and doctors aren't good at recognising them.

    So just ignore what she said there, OK?

    Hugs, Grey

  • I will later in the evening (post ranges) . But what do you think of TSH levels normalizing after weight loss? Especially after bariatric surgery? I wonder if low TSH has been a result of a sedentary lifestyle then the other way round?

  • I don't think it works like that. The level of your TSH has nothing to do with a sedentary lifestyle or otherwise. And I don't think weight loss brings down TSH, I've never heard of that happening. What does happen is that low TSH sometimes results in losing weight.

    Most hypos put on weight to a greater or lesser degree. Some of them put on so much they are advised to have bariatric surgery, but they are also taking thyroid hormone at the same time. True, if you are smaller, you need less hormone but that wouldn't bring down your TSH by very much, I don't think. I really don't know, I've never heard of this and never thought about it.

    BUT, please don't think of having bariatric surgery to bring your TSH down! It is very dangerous. And once it's done people have great problems with mal-absorbtion. They can't eat enough to sustain them. It is a terrible, barbaric thing to do. And from what I've heard, people don't live for very long afterwards. It would be much, much better to bring your TSH down by taking thyroid hormone in one form or another.

    Besides, I really think you're approaching this from the wrong angle. The problem is not the TSH itself, that is just an indicator of a problem and the problem is your thyroid which is sick and can't make enough thyroid hormone for you to function correctly.

    TSH (Thyroid Stimulating Hormone) is a pituitary hormone that stimulates your thyroid to produce more thyroid hormone. And that is its sole purpose, it does nothing else, it doesn't affect anything in your body except your thyroid. Bringing it down in itself is not very useful. What you need to do is bring your thyroid hormones up! High TSH indicates that the thyroid isn't working. Therefore you need to suppliment your thyroid hormones with little pills. Nothing to do with losing weight or having an active lifestyle. What the TSH tells you is that you need more thyroid hormone: hence the levo which is T(Thyroid)4 or Thyroxine.

    So, no more thoughts about dangerous surgery, just keep taking the tablets! lol

    Hugs, Grey

  • Grey thank you for all the insight. I am not a candidate for bariatric, I am 20 lbs over weight and I was not considering any surgery. I do see your point however bringing down TSH would not serve any purpose at all I do need to bring up my thyroid hormones. I am going to opt for the Natural Desiccated Hormone, Armor is it? My endo specialist gave me Synthroid samples for a month. But the more I read on here more people seem to complain about the synthetic hormone than the natural one.

  • Glad to hear you're not thinking of surgery!

    Armour is one of the Natural Dessicated Hormones. There are others.

    As for synthetic hormones, you have to remember that the people who post here are those who are having problems, not the thousands who do very well on Synthroid, Levo, etc. And there are thousands, but they are getting on with their lives and not posting on forums so you don't hear about them. We here are the oddities! Not the general rule. lol So what's to say that you won't do well on it? You won't know until you try.

  • Hi StLouis

    If your weight gain is one of the symptoms troubling you then it may stabilise when you get your thyroid hormone at optimum level.

    I use synthetic T4 (Levothyroxine) and it suits me. My weight has at last stabilised and although I'm now 30lbs overweight, my weight is also starting to come down slowly.

    All of the other horrible symptoms I had with a TSH of around 20 have also gone. It has been difficult at times, but usually I feel better around 5 weeks after a T4 increase, and I feel good now my T4 dose is at the correct dosage.

    As T4 suits me, my TSH has dropped - around 3 when I was last tested but it has gone lower still over the past few weeks - I know this because I feel great again.

    Greygoose and Shaws are right - you must find a thyroid replacement therapy which suits you.

    I hope you feel better soon. xx

  • If you have been diagnosed with hypothyroidism - it is a disease which calls for a lifetime of treatment otherwise it can lead to other more serious conditions.

    This is a link to an archived website - Dr Lowe died last year and some of the links within may not work but you will get lots of good information and there are other topics at the top of the page. We have, unfortunately, to find out information for ourselves in order to recover our health.


  • If you are unable to convert the prohormone thyroxine (T4) into the active hormone triiodothyronine (T3), you will eventually feel like death. I had many of the symptoms you are experiencing but since changing my thyroid hormone to liothyronine (T3), I don't suffer so.

    Some people also do better on natural desiccated thyroid (NDT) like Erfa, so if you don't do well on levothyroxine, it is possible you have a conversion issue.

    Silky x

  • im soposed to have gastric bypass nov 6 but found out my tsh is 18.5 so I think they will delay it and its my fault for skipping doses

You may also like...