Levothyroxine use

Hi, I live in San Diego CA, USA and belong to Kaiser Permanente (an HMO). I'm 72 and have been taking 88 mcg levothyroid for about 7 years; I actually feel worse as every morning after I take the pill my heart beats fast and I actually feel more tired. Wonderful news--have a new doctor now and she said I could wean myself off of the pill by taking it every other day for 2 weeks and stop. She said she will check it in 6 weeks as it takes that long for your thyroid to kick back in gain. If I still need meds she prescribe me a new one--so wonderful to have a doctor that listens and is open to change. She is only in mid-thirties and works with you to try to help symptoms--not stubbornly set in her ways.

41 Replies

  • Hi SanDiegoCA, So good to have forward thinking doctors. Hope she continues to keep you feeling well.

  • Welcome to the forum, SanDiegoCa.

    I wonder why she didn't reduce dose if she thinks you are overmedicated or switch you to an alternative immediately. You are likely to be profoundly hypothyroid 4 weeks after stopping meds and it will take weeks to optimally medicate you on a new med/dose.

  • Hi, thank you for your reply. My doctor isn't sure I even need it because of past counts and wants to see how I do before prescribing again. A lot of the US doctors just go by the book and over-prescribe meds even if your borderline and may not need them. I had a heart attack 16 years ago because of familial high cholesterol and my doctor prescribed 20 mg of Zocor (that is what they automatically start you at). After I asked him if I could try 10 mg he said OK and my counts were still good. Later I asked him if I could try 5 mg and my counts were still good--probably could have been on 5 mg the whole time which has a lot less side effects. Sorry to change the subject but I really enjoy this forum as the US forum doesn't go into much detail. The British people are more forthright and so much more polite. My paternal grandfather was from England and on my mother's side they are Scotch, Welsh, and Irish. Of course, most of us in the US are Heinz 57 variety.

  • Hi and Welcome ! Raised cholesterol can often be a symptom of Low Thyroid - so perhaps the medication for the thyroid helped ! As we age it is more common for the thyroid to become less efficient - so I would be inclined to read Clutters reply again - as you may become poorly by stopping the Levo. Now we don't want that and nor do you :-)

  • SanDiegoCa, Scots or Scottish people, Scotch is a drink. Politeness will fall away if you call them Scotch :-D

    I'm going to be very forthright because your doctor's got my 'Irish' up.

    If you didn't need the thyroid hormone you have been taking for 7 years you would have felt overmedicated and unwell and it would have shown in your labs. Palpitations can be due to undermedication as well as overmedication and sometimes the Levothyroxine or brand of Levothyroxine may cause them. Endos and doctors may overprescribe some things, but in my experience a doctor/endo over prescribing Levothyroxine is rarer than hen's teeth though I do acknowledge overprescribing does happen, very occasionally.

    If your doctor doubts you need Levothyroxine instead of making you hypo by stopping meds she could reduce dose to see how you respond and run labs in 6 weeks which will show TSH rising and FT4 and FT3 dropping as it does after a dose decrease. No need to completely stop meds. Natural TSH levels rise and FT3 levels drop in patients over 70-75 years of age. I hope your doctor doesn't tell you your levels are natural for your age and leave you with hypothyroid symptoms which she or another doctor will claim are age related and to be expected.

    Some patients have palpitations on one brand of Levothyroxine but may not have them on a different brand. Some can't tolerate Levothyroxine on its own but a small amount of Cytomel T3 can calm adverse effects Levothyroxine causes. Others can't tolerate synthetic Levothyroxine or T3 but do well on Armour, Naturethroid, WP or Acella NP (natural dessicated pig thyroid). Some can't tolerate thyroxine in any form and need Cytomel T3 only. I think your doctor should have explored alternative medications and doses instead of stopping your meds.

  • I agree with Clutter about the levothyroxine or the brand or the fillers being the most likely cause of palpitations and/or tachycardia (fast heart rate).

    Another possibility is that you are low in essential vitamins and minerals. This is very common in thyroid patients. If you could get tested for ferritin, iron, vitamin B12, vitamin D and folate measured it wouldn't surprise me if some of them were low in range or even deficient. Make sure you get copies of all blood test results, including reference ranges, and post them on here. (Please include the units of measurement too - they may well be different to what we are used to in the UK.)

    Getting my iron levels up made a huge difference to my heart health and I only get palpitations and other heart problems very occasionally now.

  • I agree also. I have been on medication for about 15 years. I realize I feel my best in Armour. I tried Levo for one year because have never felt 100 % as doctors do not like to dose higher if you are in range. Being on Levo for a year I was so much worse. Terrible bloating everyday, brain fog, nails got thin, etc. When I went back to Armour the bloating went away and my nails became strong again. I am still not 100% and may never be because they will not raise my dose even though I am at higher end of range. All that to say I wouldn't go completely off either. You may end up with more issues. My advise would be to at least try the Armour first.

  • Hi, thank you for informing me that calling Scottish people Scotch was not correct--had no clue. Believe it or not I have had faster heartbeats with Levo since Day 1. After informing my past doctor he just shrugged it off and said that was all he good give me so I ignorantly went along with it. The new doctor said she could write a letter requesting a different medication if I need it. I actually feel much better since taking nothing--the itching has stopped and my energy levels are back (maybe I'm allergic to Levo.) Last time I took the vitamin and iron tests they were OK. However, I am going to take Clutter's advice and email my doctor and request a another vitamin and iron test as well. She will be testing me in about 3 weeks so will post the results. It would be nice to not have to take anything again; however if the test results say I need to I will never take Levo again--it just has too many side effects for me that have left since stopping it.

  • It is perfectly normal to feel great for a couple of weeks after stopping thyroid hormone - been there, done that - but it doesn't last long. Sooner or later, the symptoms will come gallopping back, but you will have lost ground because you will have to start at the beginning again and work up.

    88 mcg Levo is a rediculous amount, and your racing heart could have been caused by having a dose too low. It would very much help us to understand what's going on if you could post your latest blood tests.

    I would urge you not to wait 6 weeks before getting tested - the levo will be gone long before that, and you will probably be feeling the effects! I Don't really have much faith that your doctor knows what she's talking about!

    Hugs, Grey

  • Thank you for your comments--my last lab results said TSH .89 (0.35-4.00 mcIu/ml); T4 FREE 0.56 (0.8-1.5 ng/dL); Not sure what all this means and it looks like my past doctor never ordered a T3 test of any kind. My next test will be the first one ordered by the new doctor. It's been 3 weeks now and she ordered tests in 2 more weeks. I emailed her and requested T3 and vitamin tests also as I read on your forum. Will let you know next results and what she prescribes me--she is a Primary Care Physician--not an Endo. I've never been to an Endo. Hoping we have happy thyroids in the future.

  • But your FT4 is Under mid-range, it should be much higher than that. You've been Under-medicated and your doctor has only been looking at the TSH - which is so wrong. No Wonder you were having problems.

    Your next labs are more than likely going to show you very hypo, so that will show her you do need thyroid hormone replacement. Did you also ask for antibody testing?

  • No, unfortunately I haven't been proactive about my thyroid at all; just took it for granted that they were monitoring me and that was all. I'm glad she will do something about it--my past doctor retired--probably is why he didn't pay much attention. In just a few days, thank you to this forum, I'm learning a lot about the thyroid. What is T3 count supposed to be? I wonder why he never had me tested for it.

  • The FT3 is what your T4 medication is supposed to convert into. The T3 is the most ACTIVE hormone and is needed in almost every cell of your body - including the cells of your heart. So when it is LOW - which I suspect - then it could explain why the heart-beat is not good. When there is not a lot of T3 floating around then things begin to go wrong.

    If the FT4 test result is low then it is quite certain your FT3 reading will also be LOW.

    You only have half the story with your present result and your Endo is sadly lacking.

  • Thank you for explaining what T-3 is. I goofed--my last results 3 mos ago said: TSH 2.64 (0.35-4.00 mcIU/ml. FREE T4 1.1 (0.8-1.5 ng/dL. The first lab test I posted was before this one. Still don't know what optimal range for 72 years old should be. I just emailed my new doctor again requesting to be tested for FREE T3 also (which as posted earlier has never been tested yet.) She is probably getting tired of all my email's in the last couple of days. Hopefully, everything will come to light after the next tests in 3 weeks; just know I don't want Levo again--is wonderful she is willing to order different meds as Kaiser is a HMO and doesn't always cover nonformulary meds but will order them for you if you pay full cost.

  • It all is based on how you feel - don't think age comes into it - except that as we age we are more inclined to have run down thyroids that need medications :-)

  • Hi, how marvelous (haha). As my mom used to say "sometimes our golden years aren't so golden when it comes to health." I don't know if this term is used in Britain. In the US we often call senior years "Golden Years," don't know who coined the expression.

  • I live in Greece - and feeling better than I have for years - not too far behind you in age :-)

  • The FT4 isn't under mid-range, its under the range completely!

  • I was refering to the first one SanDiagoCa posted : T4 FREE 0.56 (0.8-1.5 ng/dL)

    Not my fault if she posted the wrong one! lol

  • Sorry, greygoose, I'm still puzzled...

    0.56 is lower than 0.8, so is below the range. If this answer makes no sense in the context then I've obviously misunderstood something, sorry. :P


  • Well, I'm getting puzzled now because the posts aren't all in the right order! lol

    That was the result SanDiago posted first, then she said (below) "I goofed--my last results 3 mos ago said: TSH 2.64 (0.35-4.00 mcIU/ml. FREE T4 1.1 (0.8-1.5 ng/dL. The first lab test I posted was before this one."

    So, that means that her latest test was 3 months ago and the FT4 had come up from 0.56 to 1.1, which is better but not good enough. So, she's still very hypo.

    I'm not a great fan of the way HU lays out its posts, it gets very confusing at times! :)

  • I agree totally. I think I'm going to stay confused on this one, so I may as well accept the inevitable!

  • I goofed--my last results 3 mos ago said: TSH 2.64 (0.35-4.00 mcIU/ml. FREE T4 1.1 (0.8-1.5 ng/dL. The first lab test I posted was before this one. Still don't know what optimal range for 72 years old should be. I just emailed my new doctor again requesting to be tested for FREE T3 also (which as posted earlier has never been tested yet.) She is probably getting tired of all my email's in the last couple of days. Hopefully, everything will come to light after the next tests in 3 weeks; just know I don't want Levo again--is wonderful she is willing to order different meds as Kaiser is a HMO and doesn't always cover nonformulary meds but will order them for you if you pay full cost.

  • SanDiago, when it comes to thyroid, there's no such thing as an optimal range for any age. Optimal is the dose at which you feel well and all your symptoms are gone. As Marz said.

    There is a range for FT3 but it varies from lab to lab. So we can't give you the range for your lab, there isn't a universal range.

    And, in any case, ranges are just a guide, they have little to do with the way you feel. Your FT4, for example, was just Under mid-range at the last test (could have gone up or down since then, we Don't know) but imagine it's still the same, well, your symptoms would appear to be those of someone with an FT4 lower that that.

    I realise that's a bit complicated and difficult to grasp - especial when you're hypo - but you must understand that ranges are just a guide. You will know when you're optimal because you'll feel well, whatever it says on the lab result.

    But if it's any help, I'm 70, and I bet my FT3 is way, way over range, but it's where I need it to be. However, I Don't do blood tests, I dose by symptoms. I know my body, and I know how I feel, and I Don't need a lab tech or a doctor to tell me how I ought to feel according to a piece of paper. :) Hope that makes sense.

  • Hi, thank you for bringing this to my attention. I'm taking my Levothyroid again, but can't wait to try a different one for hopefully better results. After hearing from this forum I'm afraid not to take it as I don't want to get "super" hypo while waiting for a new test or prescription. Also, since having a heart attack 16 years ago, it is essential to make sure my cholesterol counts stay appropriate. Didn't even know thyroid affected cholesterol--talk about in the dark.

  • SanDiegoCa, As GG, says there is no age range for thyroid, euthyroid for everyone is when symptoms have resolved.

    As a guide ranges may be useful but unfortunately too many doctor's are fixated on TSH being within range and fail to take ongoing symptoms into consideration.

    TSH 2.46 is too high for someone on Levothyroxine and indicates undermedication. TSH just above or below 1.0 is usually comfortable for most people but some need it lower or even suppressed to feel well. FT4 is ideally in or towards the top 75% of range ie >1.3 in your range. FT3 is optimal in the top third of range.

    You may feel well on a higher dose of Levothyroxine but if you feel you are intolerant to it ask your doctor to add a little T3 (Cytomel is one brand) as that can calm adverse effects Levothyroxine causes. Alternatively there is NDT, Armour, NatureThroid, WP and Acella NP. All of the above are in the US NF.

  • Thank you so much for this vital information Clutter--I really appreciate knowing the ranges that are important--I've been in the dark about this. I emailed my new doctor stating these ranges as my goal--thankfully, she is open to change. I immediately took my Levothyroxine again today as even if it has some side effects it's better than nothing until she can prescribe me something better. Again, thank you for saving me all the frustration in the future.

  • Push for thyroid treatment

    Expect to have to be your own advocate when it comes to your thyroid. Some doctors may be resistant to a thyroid diagnosis, although the American Associated of Clinical Endocrinologists narrowed the TSH range for acceptable thyroid function from 0.5-5.0 to 0.3-3.04 in 2003. That means more women fall into a range that can be treated. “Find a doctor who treats the person, not just the lab tests,” says Miller. “If you’re feeling better at a certain dosage—that should carry just as much weight as the lab results.”

    After reading your message I started doing some research. This was on Fox News--thought it was interesting.

  • SanDiegoCa, I must stress the ranges are a guide only. The target should be to feel well on the minimum amount of Levothyroxine that enables you to feel that way rather than chasing numbers in the range.

  • Thank you again; I just want my doctor to know I'm having hypo symptoms so she will prescribe more effective meds or a proper dosage so I will reach a comfortable state whatever that number may be. I'm still worried about cholesterol rising. Hope they will do all the tests now.

  • SanDiego, cholesterol is totally irrelevant! Cholesterol doesn't cause heart attacks. It is a necessary nutrient and the more you have, the longer you live.

    The brain is mainly made up of it. And without cholesterol, you cannot make hormones. You are in far more danger of a heart attack form low cholesterol than high.

    It just gets high in hypothyroidism because the metabolism has slowed down so that the body can't use as much as it otherwise would, so it mounts up. But that is not dangerous.

    And Don't tell me that it's your 'bad' cholesterol that is too high, because there's not such thing as 'bad' cholesterol. What they measure in the blood isn't even cholesterol, it's the protein that carries the cholesterol and there are two types, but neither of them are 'bad' or 'good'. It's a complete fallacy.

    This whole scare came about through bad science that was never checked up on at the time. Then, Big Pharma and Big Food jumped on the band wagon making statins and low-fat 'food' etc. They are now making far too much money from this scam to want you to know the truth about cholesterol. But we know. Type 'cholesterol' into the search window at the top of this page, and you will get a whole heap of information about how we've been taken for a long, dangerous ride with this rubbish!

  • Thank you for the information. Over here they have constant ads on TV to buy new pills. They have to list side effects so they say them in almost a whisper--what a sham. Some ads list the side effects as death--the almighty dollar has them so blinded they no longer care much about the consumer; only pushing their products. Sad isn't it.

  • SanDiegoCa, There may be benefits to be had from statins for people who have had a heart attack but they're being prescribed to people in the UK who only have a slightly increased risk of heart attack. Some have found the adverse side effects caused by statins has caused awful musculoskeletal pain and irreversible neurological damage.

  • Thank you for this information. I've been taking simvastatin since my heart attack but lately it causes muscle aches even with the lowest dosage of 5mg. My doctor said I could try Cholestoff which is Plant Sterols and Stanols and test in 6 weeks to see how it goes. Have to wait another 4 weeks to test. It doesn't appear to cause aches; just a little bloating.

  • SanDiegoCa, CoQ10 should be taken with statins. That may help with pain.

  • Thank you; I tried them but they made me hyper--I wanted to run around all day. I'm no longer taking the statins and trying Cholestoff; if I have to go back on simvastatin I will try a lower dose of COQ10. Hoping my cholesterol count is OK and won't need to take them as they have terrible side effects as you stated. Will be going to Yosemite National Park for a few days so won't be able to post. As soon as lab tests come in will let you know results--thank you for your concern.

  • SanDiegoCa, when the results are available post them in a new question with the lab ref ranges.

    Have a good trip :)

  • Hi, welcome to our group SanDiegoCa. I'm 100% Scottish - Clutter's advice is always second to none. I've got Graves which is an overactive thyroid with antibodies but I became underactive during my treatment - I was kept on antithyroid drugs for too long without a blood test - anyway, I got palpitations again during my treatment and was worried that I might have become hyper again some wonderful person on here told me you can have palpitations when you are undermedicated as well as when your thyroid is overactive. Sure enough every time I needed my thyroxine increased during my treatment I got palps good luck, hope you get fixed up soon.

    P S - have you had your Vit D, VitB12, feritin and folates checked out too? If they are not well up in their lab ranges you could feel pretty tired.

  • Hi, thank you everyone for advising me to test again for Vitamin D, B12, and Folates. Just have one question--never have heard of the word Feritin--is it Iron or something else??

  • Ferritin is a measure of your iron reserves rather than the amount of iron floating around in your bloodstream when your test is done. Ferritin levels are increased by taking iron.

  • Thank you for explaining this to me--haven't been very proactive about the thyroid but will be in the future.

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