Decrease in medication Levothyoxine

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Hi Can anyone help?  I have an underactive thyroid for more than 13 years now and have been taking levothyoxine starting on 50mg and increasing to 100 mg for the last few years. Now my Doctor (just moved to a new surgery) has tested me and said that I am at the top end of my medication and over medicating.  I am to see him about this but am afraid if he reduces my medication does this mean I will start to feel more tired, put on more weight and feel more cold than I do now?  has anyone else had their medication reduced with or without problems?

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  • Posted

    How do you feel? If good I would try to persuade the GP not to reduce the medication. Really the blood test should be taken in conjunction with how a patient feels ideally. GPs rely too much on blood test results according to specialist endos Maggie
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    • Posted

      To be honest I feel ok, struggle to lose weight, still feel the cold but nothing worse than this so am lucky compared to some, think I will try as you say to persuade him not to change medication or see what the readings are before any decisions, dont want to mess about what has been working well but maybe listen to what he suggests and decide.Thanks
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  • Posted

    Hi Linda:  sometimes doctors can change a med to another or have you take 2 different meds if you reach the top level of a certain med. It takes some expert practice but you can ask if your doctor can prescribe another med in addition to the one you are on. I don't think he will lower it, but he can change the med or add to it. Since we all are different it is hard to know what would help. Explain the symptoms of tiredness, weight gain, etc...you may need 2 thyroid meds. One at a low dose and one at a high dose.
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  • Posted

    Hi Linda,  If you feel well and are happy on your current dose of levothyroxine do not allow the new doctor to downgrade your dose.  Be sure to research your thyroid condition so that you can speak up for yourself in a confident manner.

    A doctor downgraded my medication a couple of years ago and I was not as thyroid savvy as I should have been and I became severely hypothyroid after six months and very ill.  

    Be sure to get copies of all your blood tests so that you can monitor the results yourself.  Do not allow doctors to make you miserable and ill based on their blood test results instead of listening to you and paying attention to your symptoms or lack of them.  Especially don't allow them to make changes to medication based on TSH alone - it's unreliable and the majority of GP's rely on it and that is so wrong - it's the easy/lazy way for them and can bring you a lot of misery.

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    • Posted

      I agree with you, Sketchy. My endo lowered my dose and I've felt horrible for over a year now. She won't change the med. I'm freezing with a basal body temp of 96.4 on average. Tired...I'm literally sick of it and now liver enzymes are elevated. I've made an appt. with a different endo. She keeps saying the TSH is OK, when it is really low. Kicking her to the curb. She won't even discuss symptoms or answer questions I ask. Shrugs her shoulders and leaves the exam room. I'm not putting up with that ever again. I've asked her why the TSH is so low, yet I have pretty bad hypo symptoms...blank stare and no answers...Done with this. If the doctor won't listen to you, go elsewhere, is my advice. Good luck!
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  • Posted

    Hi Linda98398. My advice to you is if you feel pretty decent on your dose of med, don't let the doctor change it, if he insists on changing it, go to another doctor. I'm convinced that the majority of them don't have a clue. If they had to walk in our shoes for a couple of weeks, they'd be in the ER half the time. The endo I have been seeing lowered mine over a year ago and won't change it though I'm freezing and so tired can hardly function. If you feel pretty good on this dose and don't have too many symptoms, throw a fit if you have to. I'm scheduled with another doctor. Disgusted for sure. Good luck and let us know what happens!
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  • Posted

    Is your endo basing her complete decision on TSH alone I would ask her to test FT4 and FT3, it is also worth knowing about feritin, folate, B12 and D3.  Incase you have other deficiencies that can give you similar symptoms.   I have gone through 4 doctors so far and have finally decided to get all the tests done myself I found that I was both low in b12 and d3 so am now supplementing, I also requested a trial of T3 in addition to my T4 which my endo agreed to and I am feeling much better, now, although I have tweeked the dose a little, but am feeling better than I have for quite a while. 
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