Decrease in Levothyroxine

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Have been reading posts about peoples experiences of changes to levothyroxine especially those increasing their dose.  I wonder has anyone had there dose reduced after many years on the same dose and how did it make you feel.  I have been hypothyroid since 1993 and have been on 125mg since Christmas 2001.  Recently my blood test showed my TSH to be 0.28 and my dose has been reduced to 100mg.  I should add that for many years it was around 2.3 to 2.8 but after finding out I had low vit D around 2012 and started taking2200iu of Vit D3 my TSH reduced slowly to 1. something to 1 then 0.9 which I  thought was was good as I thought the Vit D3 was helping the thyroid function.  It is often difficult to know what is causing what symptom as I suffer from anxiety.  During the last 2 years I have had family illness and a house move.  I am awaiting results of heart stress tests to rule out angina as I had been having some problems during cold weather and exercise.  Now I realise that these symptoms could be to do with being over medicated as most of the palpitations and heart thumping has gone although this could also be anxiety.  It has only been 2 weeks since I reduced the thyroxine.  My gp has also reduced the vitamin D dose by quite a lot and also prescribed calcium has I have osteopenia.  I have other symptoms which might be to do with thyroid but won't bore you with that.  Would love to hear from any one in the same situation.  Thanks.

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  • Posted

    I've been overdosed for years and had to come off a lot of levothyroxine. It made me feel incredibly exhausted for about four weeks after each drop. I started to get my energy back a bit after about 6 to 8 weeks after each drop and it was really soul destroying and hard work.

    I may have missed something here but why is your Gp reducing your vitamin D? Especially if it's having a positive impact on your thyroid function? I'm on this too and my Gp recommended taking it from October through until April.

    Palpitations are a sign of taking too much levothyroxine so may be causing the additional stress on your heart. Too much meds can also cause anxiety on its own

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    • Posted

      Hello  Thank you for your reply.  I find it both frustrating and confusing not knowing what is causing a particular  symptom.  Many anxiety symptoms are similar to low thyroid and other conditions.  For example I have osteoarthritis in my knees,neck, spine and starting in the hips. When I ache all over or am in  pain I often wonder have I overdone it or could be thyroid etc.  

      With regard to the reduction in vitamin D3 supplements it is a long story.  Back in 2012 I broke my wrist.  After a Dexa scan revealed osteopenia my then Gp checked both Vit D and calcium levels.  Calcium was fine vitamin D low at 39.  I was prescribed 2,200 iu D3. At the 2013 blood test the levels had gone up and I was told to continue at the same dose.  2014 the blood test I was told it was too high and to reduce it to half so I started taking one every one day.  I had my usual routine blood test in 2015 and I received a standard letter from the surgery saying that although my levels were around 50 they would like them a bit higher so could I purchase 1000iu Vitamin D and take them You can imagine my reaction.  I phoned the surgery and explained that I was already taking 2,200 every one day so was already on 1100.  I was referred back to the doctor and was told to go back up to the full dose.  My new gp (I moved 200 miles away last summer) says that the dose I am taking is too much (level is 85 so high but not toxic) and that they usually only give 400iu vit d and calcium for diagnosed osteopenia.  I should added that I recently had a repeat Dexa scan and there was a very very slight improvement in bone density.  My gp also seems to think that the high vitamin D3 has caused the change in my TSH over time and that is why it went out of range.  I should add they use the range which I think is 0.3 to 5.  I understand that some doctors think that it should be lower not above 3 and ideally around 1.  Is this what you have been told?  I am not entirely happy with taking the lower dose of vitamin D3/calcium and have asked that they check both calcium and Vit D levels when they recheck thyroid function in March.  It will be interesting to se what they are.  I have also just read on line that the new blood pressure tablet I am taking which is a diuretic can affect thyroid results.  It seems to me that you have to be your own doctor.  I will be happier once I get the results of my heart stress tests which were done almost 3 weeks ago.  I'm nearly 70 and moved up here to be near daughter and family.  It is well known that many thyroid patients have low vitamin D levels so am not totally convinced about the change in Vitamin D3 dose.  Time will tell I suppose.  Quite frankly I just want to try and get on with enjoying my life even thought I am sometimes restricted because of pain.  Sorry to  go on a bit but I am really fed up and not knowing what or who to believe.  It is funny though that the heart symptoms have really improved since lowering the thyroxine.

      You don't mention when you first reduced your thyroxine but I hope you are feeling better and will continue to do so.  Thanks.

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    • Posted

      Oh I see that makes sense. I was told Tsh should be ideally around 1-2. I came off levothyroxine completely about a year ago as whatever dose I was at I still felt awful. I now take thyrogold which is a natural dessicated thyroid treatment from America. I feel a lot better in myself. Doctors don't like to make you aware that there are treatments other than levothyroxine and a lot of them don't know this is the case

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  • Posted

    I have similar symptoms after being  stable for many years on 100mcg of Synthroid. Gradually over the years my dose had to be reduced do to palpitations, even though my blood work was within normal   .  I went to 88mcg and no problems for several years.  Then I would wake in early morning with tachycardia.  Stopped medication, no symptoms but as soon as I started again, more Palpations.  I got down to taking 37 mcg wirhout heart  racing. Was feeling extremely tired, had Vit D checked then was started on 15,000 units weekly.  Started feeling better.  Blood work shows Vit D in the normal range and tsh 7.4 T4 in normal range.  Had ekg, treadmill tests, heart valve tests and all was normal. I have become sensitive to levothyoxine.  I do not feel the same as when I was on the 88mcg but my only alternative to take a Beta  blocker.  I refuse to add another drug in order to take a drug. So, I have changed my diet, take supplements, and I Take 200 Units of selenium 2 times a week.  Three months laters my lab values have improved but still low TSH.  
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    • Posted

      Hello Thank you for your reply.  Your post makes interesting reading.  Would you mind me asking how old are you and how long have you had thyroid problems? 

      I can only wait and see what the next lot of blood test results reveal.  I sort of think that over time my vit D levels will go down too much and then possibly TSH might rise too much.  Doctors don't seem to agree on blood test results and dosage.  My other moan is side effects of medication and interactions.  I have had to point this out on more than one occasion over the years.  I wish you well and hope that you can get back on track again soon.

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    • Posted

      Thank you libralady.  I am 65 and my tachycardia I was having with levothyoxine stared full blown when I was 61.  Today, I still do not feel as I did when taking the higher  dose of thyroid med.  your symptoms sounded so similar to mine.  I know that some people have to cut back on the med as they get older.  That's the only reason I know of why I was gradually having to decrease  over the years. I am sorry you are having problems and I do know about the aches and pains since my dosage has to be lowered. Wishing you well and hopefully better answers from your doctor during your next visit

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    • Posted

      Hello again,  Sorry you have been having a hard time over the last few years.  I do hope I can get better answers when I go back in March for repeat blood tests.  I might even go back before.  Today I am aching all over whilst I know some of is arthritis I still don't know if there is something else going on.  I hurt all over my back upper and lower, neck pain in thighs, knees and going down to feet at times.  I have had this before but it does seem that it has got worse since the lower dose of thyroxine allbeit only 2 weeks.  Like you I did know that as you age your dose some times has to be lowered there has to be other reasons that come in play as well.

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    • Posted

      Yes, I agree, must be something else going on.  I have even looked at other things and did some research on thyroid. And hashimotos.  Certain lotions and soaps have trilosan in the product that is an endocrine disrupter.  Let me know how the blood work goes! 
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  • Posted

    I was diagnosed a little under a year ago. Originally I was put on 125mcg Levo but it made me feel very ill. Dose was reduced to 100mcg but I was still not feeling right. After bloods my endocrinologist reduced further to 50mcg and also changed brands. I feel a lot better and am back to sleeping.

    As for vitamin D it is possible to have too much which can cause toxicity. I was prescribed vit D at just 5ml - once a month.

    It's interesting as a Brit living in Italy, to note that GP's here are not allowed to prescribe for thyroid problems and they have to refer you to an endocrinologist. (In fact anything where there should be a specialist referral, GP's can't prescribe for).

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    • Posted

      Yes I have often wondered why we are not referred to an endocrinologist.

      Gp's don't seem to know much about thyroid disease.

      Glad you are feeling better and hope it continues.

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