Lowering dose of thyroxine

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My endo has stated that my blood results have come back stating that I’m at the higher end of the normal range and has advised me to decrease from 125mg to 100mg of thyroxine per day.  I’ve been on 125mg for 1 year and have told him that I’ve felt hyper all year but he told me not to decrease as my bloods were in the normal range until finally my TSH level has gradually increased month on month to a point where he now believes me.  Any way, I’m wondering how long it take for me to level out at 100mg and will I gradually get better or will I be all over the place emotionally for example until I’m level or is everyone different?.  Thanks 

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  • Posted

    Hmm this perplexes me.. which numbers are at the high end and what is the range...generally as TSH goes up you would want more thyroxine to lower the TSH.... lowering your dose of thyroxine should cause your TSH to increase even more... is it possible instead of feeling hyper for the last year you have been in range but still hypo? So many of the symptoms can over lap.

    Do you have frees with ranges? And definitely, everyone is different.

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  • Posted

    Sorry I meant my T levels not TSH.  I don’t know which level was high but my endo said I was high. 
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  • Posted

    Hi james,

    It can take about 6 weeks at the dose to get a good lab result. Each day the thyroid hormone will get out of your system it's hard to say exactly how many days but you should start to feel better soon. I am super sensitive so I feel increased and decreases almost immediately.

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  • Posted

    Sorry why do you know SO LITTLE ABOUT YOUR THYROID DISEASE AND LAB RESULTS? Confusing TSH results with T hormone results...Please read up on your disease get copy of your labs and have some understanding of what they means. Before the internet it wasn't as easy to get info had to go to librairies, bookstores etc. READ UP.

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    • Posted

      Mar is right. You really have to know what’s what with thyroid disease, if you want to have any chance of advocating for yourself.
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    • Posted

      I’m sure you are right but there is a way of communicating it.  I don’t know why this has escalated into this for.  All I want to know if how long does it takes for your symptoms to adjust following a levothyroxine decrease? That’s all.  
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  • Posted

    Hahaha!! Wow mar75090!! Who do you think you are talking too?!  Are you looking for pick a fight with someone in order to entertain your Saturday.  Why has my post angered you so much?  Forums are for discussions and if you don’t like what I’ve written just scroll on.  It’s not hard.  Do you own this site? No, so keep quiet if you haven’t got anything productive to say.   Having thyroid issues can make you have a lapse in concentration hence my mistake, does it really matter that much of it’s a typo.  NoNn Do you know how Unwell I am? No!! If we all knew exactly what was wrong and read everything ourselves then these forums wouldn’t need to exist in the first place  and no one would ask for advice would they.  Why are you looking at forums if your the type of person who goes to libraries and know everything yourself? Trolling maybe?   It sounds like you’re unwell and might need to start a post in the mental health forum or anger management forum.  Take care lol
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    • Posted

      Just trying to tell you to take control dont have a doc telling you he's making changes and you dont even know what your results are. Get copies of labs you'll need them in the present and future. Educate yourself YOU DONT HV TO GO TO LIBRARIES it is online...thats what I was saying. Youll get better fdedback when you know your results. 25mcg is a big drop find out why he lowered ....what results. It's for your own good.

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    • Posted

      Hi James yes very rude as well I thought , however move on no point wasting time on a rude person , you were only asking a question 

      This forum is very good but if you can search a forum called health unblocked . They will advise you and are spot on . 

      💕

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  • Posted

    Sorry wasnt bring rude but just trying to convey to him that he has to learn about this life altering disease. That getting your lab results is EXTREMELY important. Understanding them just as important. And when a doctor makes a change without giving results.it is unacceptable . You have to be your own advocate bc thyroid disease is a lot more than your thyroid gland it effects every cell in your body. Ignorance is not bliss in managing this disease. Maybe months down the road both of you will realize this.
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    • Posted

      Excuse me but I am trying just like James to understand my illness and we have to start somewhere , it’s folk like you that put us off asking questions on these forums .. and yes you are rude .....,
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  • Posted

    Ps. Did you skip your dose the day of testing and took it AFTER. the blood draw? If not then your results may not be correct. Sometimes my doctor does thyroid tests randomly and I took my dose few hours before. The results are so different than when I skip that dose until blood draw is over. Just letting you know in case you didn't.

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    • Posted

      I appreciate that you think you are trying to help but if you have someone who is dealing with a disease like this and they have extreme brain fog and find it hard to concentrate then things get a little difficult for them, they might not know or have the ability to educate themselves around this as much as you have until their are well.  This is why we try go to forums and the internet to find out.  Yes before we didn’t have this tool but we have it now and it’s useful to use.  You should know that when you write in capital letters it’s classed as shouting.   I’ve seen your previous posts to other people on your history and I can see you’re trying to help

      But very harshly may I add.  How often are you on here  in order to allow yourself to get that angry over a post.  Maybe take some time off as responses like that aren’t helping anyone.  Finally, you should know that if you are hypo you would normally be dealing with some depression or if you are hyper you would be dealing with anxiety.  Both are terrible! Someone people come on here because they would like some reassurance as their mind is all over the place, they don’t need someone like you having a go at them when they are reaching out.  It will make people stop asking questions as they think they may be stupid etc...! Be kind! Life’s hard enough as it is.  

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    • Posted

      Hi james,

      I am sure in Mars own way he meant well. I think it's really all in how it is put. Like you said!

      I have had hypo since I was 16 I am now 39. I have been without my thyroid due to cancer for 20 years. So i have had my fair share of crappy dr and levels all over the place and increases and decreases. I had to do tons of research. Like when I was prescribed levoxyl and I went for my refill of the med and started having symptoms I found it changed manufacturers and they had a filler added that I was allergic to. My doctor wouldn't have known that and i had to tell my doctor. I started getting all my labs and writing down how i felt on each one of them. It's a great reference because i dont fit their stereotypical ranges. I feel better toward hypothyroid range. So definitely start doing that so you will see where you feel the best. Keep it in a folder and take it with you to the doctors cause your working as a team to make you feel well again.

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    • Posted

      Hi Mellisa, sorry I’ve only just seen this post from you.  I understand what you mean, I’m sorry you have been ill also.  My story is very mixed as well.  Hopefully you can help me little, It all started when I started to suffer with anxiety about 7 years ago and went on antidepressants and things kind of stabilised for a while until one day about 4 years ago they just stopped working and even with an increase in medication my anxiety wouldn’t be held at bay.  I had blood tests and my results for everything was normal (including thyroid) and I got diagnosed with anxiety and went to counselling privately for 2 years to address the anxiety and studied mindfulness in depth which cost my thousands as the nhs waiting times were very long.  One day my anxiety got so bad that I was sleeping in the day all the time and loosing some weight, my mum suggested to have my thyroid checked again and I got diagnosed with Graves’ disease.  My mum also has graves disease.  By this piont I was completely exhausted as to be expected and I thought...well at least I know why I’ve been feeling so anxious.  I went to see an endo privately as the NHS said it will be 6 months before I see an endo via them.  My endo put me on a block and replace method  and eventually got me to a point where I was underactive but done this very quickly.  He said as I was still suffering with anxiety and my bloods show I’m underactive, therefore I do still have a anxiety problem and suggested I saw a psychiatrist.  I still think he didn’t give my body time to adjust to being underactive as I have been feeling like a wound up doing for 5 years.   I went to see the psychiatrist and they put on on antidepressants which didn’t work and for the last year, since I’ve been diagnosed with graves ive been messing about and concentrating on my antidepressant dosage as my endo start that my thyroid levels were in normal range even though I was complaining about feeling on edge all the time.  I’ve now decreased off my antidepressant to a starting dose which is good.  I was having test with my endo every 3 months and this test showed I was slightly overactive.  So he said to decrease from 125mg of thyroxine to 100mg which was music to my ears.  I’m now at week 2 of my decrease and not feeling the best.  Have a lot of brain fog and some weird head sensations but my thoughts are slowing and my palpitations are decreasing.  I’m am having a rollercoaster of emotions at the moment.  Is all the normal to feel when decreasing or should I just be feeling better everyday slowly, As my endo was so adamant that I have anxiety I suppose I’m wondering if it is the anxiety illness not the thyroid that causing al these issue. Thanks 
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    • Posted

      Yeah a 25mcg decrease can make you feel.lethagic and like your brain is filled w mud. But decreasing antianxiety or antidepressants meds can drive you up the wall.
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    • Posted

      Thanks,  yeah I’ve come down off the antidepressants now and have stabilised on my current dosage. So someone said above that it takes 6 weeks to get a good lab result but how long does it take from the symptoms to calm down and level out. 
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    • Posted

      Hey James just remember that the anxiety could be from thyroid hormones and the best thing is to don't get anxious over being anxious. Use the jittery feelings in a positive way go for walks be active don't just lay down when you feel hyper. Keep checking your antibodies even if your doc sees no reason to do so. If you can get rid of the antibodies that's a big plus.

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    • Posted

      Hi james,

      Sorry about the untimely response! I have anxiety issues also and I am hypothyroid. I am also very sensitive to any kind of medicine and I can feel an increase or a decrease almost immediately. Usually by my heart rate. When you have both anxiety and thyroid problems it can be hard to distinguish which one is acting up. The answer is probably both. When we dont feel good it makes us anxious as to what is wrong then we overthink and tire ourselves out even more. When we feel good then we dont worry but as soon as we feel bad then it kicks on and we cant shut it down. When you have an auto immune disease your thyroid will release large quantities of hormones that will flood your system from time to time and make you feel like your having an anxiety attack. Also if you are hypothyroid then your energy is coming from adrenaline and when your adrenals cant produce enough to keep you going then you become tired and that makes the tolerance for stress much harder to handle. And the gaba in our brains help to get rid of our adrenaline. If we are low on gaba then adrenaline stays in n our system longer which increases heart rate. Then if you add thyroid medicine to that mix then you really feel the symptoms because your now adding hormone that is supposed to give you energy so therefore your heart rate will in increase more till it becomes adjusted and your adrenals calm down. I hope this is making sense. I think it is very complicated when someone has both a thyroid problem and anxiety/depression. The combo makes it harder to treat and also as the patient harder to tolerate the side effects of treatments.

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    • Posted

      Also wanted to add that when I had a decrease in meds in the past I could feel my heart rate decrease but also my energy level went down for a week or two. But I would take that over the heart palpitations any day. Then it would level out and I was back to my normal self shortly. Idk if it will be different for you since I dont have my thyroid at allsmile
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    • Posted

      I found the meds cause more anxiety than the hypothyroid disease. 

      Its no coincidence that many of us who take thyroid meds also start taking  anti anxiety meds after starting thyroid meds.

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    • Posted

      Thanks for your reply’s Melissa, sorry for not responding quicker I’ve been very busy at work.  The good thing is that my heart palps have started to calm but once a day I do get this sudden rush, where my heart gets very racing and my head fills with pressure but even this is calming down now with the decrease which is good.   However my head is still a little all over the place, full of pressure and foggyness and general clicks and crunches.  I’m just over 3 weeks from decreasing by 25mg of thyroxine and have been slightly hyper for the past 14 months so I’m guessing that it may take a bit longer for me to balance out?? I may be wrong but hopefully you or someone can shed some light on time scales please? One day I feel I’m getting better and then the next I’m a foggy again? 
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    • Posted

      Hi james,

      I am sorry I cant give you an exact time frame since it is different for us all. I would think though by six weeks you should be feeling better since that is the time frame that they would normally do additional blood work to check your levels. If you are not feeling better write down all the symptoms you are experiencing and hand the paper to the doctor and let them sort it out. When we deal will chronic health problems it becomes hard to distinguish which ones are caused by the ailment and which ones are actually just anxiety because we dont feel good. I have awful feelings when they do thyroid increases. I hate it. I feel lots of heart palps and then I am not I am dizzy and I have headaches and feel like walking across the room is running a mile. It really sucks. That's why I feel best more toward the hypo range. Most does want you in the lower range of they go off of tsh only. They feel this is the "normal" range for us. We are not a piece of paper with numbers on it and each of our bodies requires things differently. I have an auto immune hashimoto's thyroiditis my mom has it and one of my brothers also. We are all on different doses of different meds and they do fine but I struggle with every little increase. Their range for them to feel good is different then mine and theirs is different from each other also. Since I dont have my thyroid I am on a large dose of thyroid med to replace. I notice as you do the decrease in heart palps with a decrease then I will have some lack of energy but that doesn't last to long. The head pressure I usually would feel if I was having anxiety or tension. I think the only reason I could tell it was anxiety is because when I took the xanax it went away. If it was because of my thyroid I dont think it would of gone away with xanax.

      If your body has been used to the increase in meds then it is gonna need some time to come back down and to slow things back down. I would definitely say something if at 6 weeks there is no difference as the meds may need to be reevaluated. Make sure you grab copies of all your labs and write down on them how you have been feeling. It is gonna be a great reference to be able to find a good range for you.

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    • Posted

      Today doctors are reluctant to rx antianxiety meds so they rx antidepressants to anxious people who experience increased anxiety and agitation. They used to rx antianxiety meds to ppl on antidepressants who bcame too anxious.on antidepressants. You lowering your dosage may also hv also increased your anxiety.
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