Can i increase my dose?

My doctor reduced my dose of levothyroxine to 125 mcg down from 150 mcg and i haven't felt this run down since before i was first diagnosed. i have gained a lot of weight, my skin is dry and i feel drained. My doctor won't listen when i tell him how I feel and insists i am taking too much. Can i increase it myself to the dose i was on previously and see if things improve? I feel like i am hitting my head on a brick wall when i talk to my doctor.

40 Replies

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  • You could increase it and see how you feel, but if the doctor doesn't agree with you its worth asking for a referral to an endocrinologist. Be really careful that you get a good one though. there is a list available of the better endos. Email Louise in admin for a copy. Before you do anything with the meds though, get a copy of your test results, just to double check that there is room to increase. Post them on here and people will give them the once over.

    Xx. G

  • Oh my, did he explain why he reduced your dose? I suppose it was because of your TSH being very low.....but we expect it to be suppressed when you take outside hormone. It doesn't matter if it's very low. What matters is your FT4 and FT3 and their comparative results. Can you find out what they were when he decided to reduce your hormone? Unless they are both very high, that would be the only reason to consider that you might be over medicated.

    These GPs have ruined people's health with their ignorance. That's why many have decided to monitor their own treatment.

  • Without any new blood results it's difficultcult to say with certainty what the situation is though symptoms suggest you are now under medicated. I would certainly increase but may be not straight back to what I was in before but alternate between the two doses. Go back in 6 weeks for a retest regardless how you feel. If you are still feeling rubbish tell him you were feeling so bad at first and thought you had dropped the dose too quickly hence the halfway thing and then you either, depending on what happens say you feel that very slight decrease is fine or it's not working dropping it so can he suggest anything else or refer you. But you really need your FT4 and FT3 results to firm up your point of few. Many of us need to increase our dose in the winter so I think it's the wrong time of year to be going lower without any good reason. Have you are bloods to show/suggest why he made this decision?

  • What really could happen if you increase your dose? If you feel a little hyper then you only have to reduce again.

  • Last time he looked at my results he only looked at the thyroid levels and said i needed to reduce. He did this on 2 occasions and tried reducing it to 100 mcg and 125 mcg on alternate days but I kept forgetting which days i had taken which dose so i left it at 125 mcg. I was already feeling a massive decline in my general health after the first reduction. I will be asking for another test when i can get time off in February and hopefully I can request a print off of my previous results. Until I joined this group I didn't even know i could do that.

  • Change your g.p

  • I did increase my dose, out of desperation to feel well again. I was on 100 thyroxine with 20 T3 and still symptomatic. I increased over a few weeks to 200 and 25 of T3. I started to fell human again. I then had saw bowel specialist who took thyroid bloods but only did TSH and T4, overlooking the T3 even though I am prescribed T3. I then tried to get the T3 done, with difficulty but managed (only just) to get it done at GP practice - they supposed to do it anyway but override endo. When the results came back T4 was 36.8 and T3 15.1. TSH is less than 0.01. Gp then reduced me to 150 and back to 20 of T3, which is my current dose. Feeling ok, getting up at 6am, bed at 11pm, whereas before I was in bed 10pm the latest, often earlier and waking at 10am. Although being on 150 is making a difference for me, gp practise only monitor me on the TSH and ignore the T4 and T3 levels, which I disagree with. Am due for bloods end of Feb, so depending on what they say, I may end up taking things into my own hands and managing the dosage myself. I still have problems with hair falling out in handfulls when I wash it. I also have scalp dermatitis - which is clearing now I have treatment for it that is working. I still have lots of skin problems, and have many steroid preps and moisturisers on script, and I have severe bowel probs - under the hospital for that.

    Have you ever had a parathyroid check? This can affect your skin ect. I am also hypoparathyroid. Am on calceos for that as vit D3 very low. Be worth checking what bloods you have had done

  • I only ever get the standard thyroid test, i have never been told about parathyroid tests or any others. I just wish i had known my options years ago instead of thinking the doctors were experts!

  • I know what you mean. I only knew about the parathyroid test because when I lived in Cardiff I had a really good gp there who was up on this. I then started reading up and doing my own research and came across this site which is brilliant as I have learned so much from here.

    If you have not had a thyroid antibodies test done, could request one from your Gp. I had my first one ever just before Christmas and after being on thyroxine for more than 5 years and on a high dose, mine are high.

    The following tests would be helpful to you:

    TPO Antibodies

    Also, B12, ferritin, magnesium, zinc (if your gp will do it, mine said no as its only a trace mineral - I may not agree with that though)

    If you're symptoms have worsened since decrease in dose, sounds like you need to increase back up to a level that makes you feel better.

    Gp's should be doing TSH, T4 and T3, also antibodies. Most, including mine only test and monitor on the TSH, which is the worst way to treat hypo. That lead me to taking things into my own hands x

  • Also folate needs to be checked

    Sorry, forgot to add that one

  • You are symptomatic so surely under medicated. Prior to thyroid blood tests doctors increased thyroid medication until symptoms went.

    I did not feel well until my free t4 was just above the top of the lab range. There is no way that any doctor will get me to reduce my dose as I know exactly how much I need.

    Doctors and most endocrinologists treat according to TSH blood tests, when they should go by free t4 being at the top and free t3 towards the top of the lab range.

    Also most GP's do not know that when taking T3 or NDT which contains T3 that it suppresses your tsh.

    Push for the higher dose, let us know what your free t4 is?

    Sue

    thyroiduk.org

  • on what grounds did your doctor reduce your dose

    what test results did he use ............get a copy of all your results and post them here so we can help more

    You are clearly proving you needed the higher dose

    did you take your thyroid meds in the 24 hours before the test because this will always screw up results and cause doctors to reduce dosages

  • The last time i took it about 2 hours before my test but the previous one i waited til after my test. since he reduced it both times I didn't think it made a difference.

  • My doctor just said my thyroid levels were too high. Not once has he ever mentioned vitamin levels, even when i have tried to tell him how bad I feel. He brushes it off and makes me feel like a hypochondriac

  • I'm afraid that's because they know nothing about nutrition! They believe that vitamins are irrelevant. I'm afraid you're going to have to start standing up to him! Remember what Eleanor Roosevelt said? People can only make you feel small if you allow them to. Or something like that. But you know what I mean. I know how difficult it is to be assertive when you are feeling so ill, but it gets easier with practice. It's time to stand up for our rights. The day of the doctor-god is over! Long live the patient.

    Take care, Grey

  • Until recently I always trusted that my doctor knew what he was talking about. I have considered changing my doctors entirely but worry that i am going to get another one who doesn't know what he/she is looking at.

  • It make a huge difference

    never never take it for 24 hrs and always get a copy of the results

    doctors only look at blood tests not symptoms

  • Not convinced not taking T4 for 24 hours makes a difference, my TSH has gone down which ever way.If it takes over 7 days to have an effect it seems unlikely to show up in the blood that quick .May be different if taking T3.

  • From my experience it is the FT4 that is higher if you take your meds a few hours before hand. I didn't seem to affect my TSH.

  • You may not be convinced, but give it a try anyway. What have you got to lose? Just take it right after the test, it's not going to cost you anything, and it might make the difference between a dose increase and a dose reduction, whether it's T4 or T3. Are you doubting our collective experience??? lol I can assure you that it does make a difference.

  • I agree there is nothing to lose and I have been not taking the meds until after apart from when the doc booked an appointment for lunch time immediately after my appointment with him ,and the TSH still was lower then before.

    There is a book on investments called The Madness Of Crowds ,tulip mania etc. Collective experience can be mistaken. On this site there are many with multiple health problems maybe not all diagnosed and there are dangers in projecting remedies to all.Having said that ,I am not knocking the site which is wonderfully informative .

  • Advising not to take your hormone until after a blood test is hardly 'projecting' a remedy! I think you're exagerating a bit, there. maybe you would prefer we didn't say anything, and just let people get on with it? In any case, nobody is obliged to take the advice, they can always do as they think best.

    Oh, and it's not just on this site that people say not to take the hormone before a test, I think you'll find most of them do.

  • I was not meaning that specific advice as it can do no harm at all,was generalising from the miserable position of being denied vin for the second day with more to go.

  • Why are you denied wine? Have you been a naughty boy?

  • Doc reckoned bloods showing liver damage, I asked how bad but then he said that the results not reliable .Despite that ,best to have 3 nights a week off. He rightly pointed out that as life changes,in my case retirement and not having to be up at 6.30am means one can booze more and I did.

    Moderation in all things!!!!

  • Amen to that! Ask for a second opinion.

  • Why do people go on so about alcohol, to experience a clear mind is a wonderful thing, I treasure mine.

  • You may be right ,it's an addiction.Todays latest research is that a small glass a night reduces heart attacks compared to non drinkers and those who drink more than one glass a night.Tomorrows news will be different!

  • I am in the same situation, have not felt well since levo reduced from 125 to 100. People suggest upping the dose yourself but if you are only prescribed 100 there are not enough tablets to do this and you would run out before the next prescription is due, am perplexed.

  • That is the problem I have.Will not be able to get more meds.

  • Mmm, unless they are gotten privately, prescriptions go in early - hoping they wont notice or they are gotten online

  • It was a while ago joyla but I think I was so desperate that I tried taking a higher dose, felt much better, had proof that it worked and was able to ask for an increased prescription on that basis.

    I was lucky that my GP was cooperative but, then again, perhaps we need to be more assertive when it is our quality of life that's at stake.

  • In the past I have taken above the dose and gone back for a prescription early cos I ran out of tablets and the gp does not even notice the dates

  • majority of doctors and Endos have no idea about the vital need for right level of vitamins etc plus they fail to recognise that the process of becoming hypothyroid strips the body of all vitamins etc so horrendously

    My husband had Beri Beri and scurvy despite always a diet rich in true wholemeal bread and loads of oranges long before his hashimotos was diagnosed

  • the only answer when doctors refuse to give you adequate dosages is to self treat using NDT etc which can be obtained via internet

  • I increased my dose when the Doctor said I was at the right level but still felt rotten. I just overlapped the prescriptions so I always have a little extra in hand. What reason does he give? What is your TSH level? Docs normally medicate on that and they get jittery when it goes what they consider to be too low. I think that your TSH is only an indication of what your test results are not how you feel.

  • The problem is doctors are taught to treat by the TSH blood test results -many GPs do not know the signs &symptoms that hypothyroidism presents with & will not treat via that route. On top of which Endocrnologists also advocate treating by the TSH so it's extremely difficult these days to find a medical practioners who will not over obsess on the TSH. I've been looking for a while for an open minded medical practioners who will advise my GP & have been unable so far to find one....even off the lists from here. Being on a combination med means inevitably my TSH is supressed & has been now for over 8yrs -thyroid hormones themselves are well in range but this makes no difference. Unless I can find someone am coming to the conclusion I will have to self treat. All a bit crazy as have been on the same dose (with winter/summer) tweaks in all that time. Nevertheless my current specialist is worried by my TSH though admits my actual level of thyroid hormones are perfect!!! Nuts!!!

    Your best bet is to read up & become knowledgeable...you will have to take charge if you want to feel well again. Good luck!!

  • After years of gradually upping my own dose, with a gradual return to health, my GP wanted to reduce it from 150 mcg to 125. I politely enquired why she proposed reducing it when I felt so much better? No real reason was given and, after an embarrassing, silent impasse, I suggested trying 125 on alternate days to see how I got on, but please would she leave the prescription at 150, as it had taken a long time to finally feel better. I tried alternate days but immediately put weight back on, with returning symptoms. I returned to 150mcg and heard no more.

    I don't believe you have to agree to a reduction in medication without good reason - Rod posted information about this some time ago. I'll try to find it if anyone needs it.

  • Absolutely i agree with polaris. I went back to my GP several times feeling ill and she eventuallysaid 'well youre the only one that knows how you feel, and thats the most imprtant thing. as long as you know that you're the one choosing to do this, go ahead' Since then I have managed my own dose and am at the moment dropping 25mcg as i began to feel unwell. You really cant go far wrong; you will know if your dose is wrong, and alter it again. I think we make a big mistake giving evverything over to the GP.

  • Totally agree, morena! You were Lucky with your doctor, there. Unfortunately, not everyone is that Lucky. Most doctors will just trot out that well-worn phrase 'it's nothing to do with your thyroid, your TSH is in range!'

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