Problems from a lower dose

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I am a male (31) who was diagnosed with Hypothyroidism at 19. I've spent the last 12yrs on a steady 175mcg with no change, and despite some side effects (excessive heat and sweating generally) have coped very well.

I've been asking doctors over the years if I can do something to combat the problems I am having with the overheating, but was always told that there was nothing, it was a common side effect. As anyone who has this knows, it can be pretty restrictive and debilitating, and so, a few weeks back; I asked my GP if there was anything I could do.

She suggested, because there was some 'tolerance' in my levels, that I drop my dosage to see if that helps. I thought she would say to go down to 150mcg, but she said straight away to drop to 125mcg with a blood test in 3 months,

It's 3 weeks later, and now I'm experience the following problems

1) Severe change in mood; am so so low (never before had this)

2) I'm getting patchy sleep

3) No energy

4) Stomach problems

5) Headaches

6) No concentration whatsoever, when usual concentration is quite intense

7) I'm extremely irritable

I went back to my surgery this morning for urgent help, as its badly affecting every area of my life; I sat at work yesterday and my head was just mush. I saw a different doctor who, gave me this rather bizarre option - do you want the sweating or the current problems. Shot or stabbed then basically? Then she told me she wouldn't change my level back to 175mcg without a blood test, which I now have to wait a week for. She also ordered an ABPM test for my blood pressure, which I've also never had before....

So I'm left here, totally alone, confused, down and now abandoned (or so I feel) and I just don't know what to do. It seems wherever I go, I get people who don't understand the condition or have any concept of what I seem to be going through. I just don't know what to do - I'm thinking of trying to see another doctor on Monday to see if they can suggest anything. I don't want other tablets, but I need to be better

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10 Replies

  • Posted

    I am on a lower dose now and getting some symptoms like yours. Why not ask to go to 150mg. She shouldn't have dropped it so low all in one go. My advice. Change doctor!
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  • Posted

    I never see the same doctor... and i did think it was odd at the time. I think I'm going to go again, see someone else and get my pills back!
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  • Posted

    I cane very difficult to get the dose right ad maybe another doctor in the same practice might not want to change your own doctors dosage unfortunately, but you need to make it quite clear that there is a middle dosage and you want to try it.
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  • Posted

    I would endorse the fact down 50 mcgms is a big jump. If the sweating is due to over medication almost certainly the inabilility to concentrate on the lower dosage is due to under medication. For myself over many years I have found my resting pulse the best indicator of how well medicated I am. I was on 150 alternating with 175 for quite a time and my resting pulse was over 80 beats per minute and I felt agitated and anxious Now I am on 150 mcgms daily equivalent,actually 100 mcgmsT4 + 10 mcgms T3. This results for mme in a resting pulse between 70 & 75. This is not necessarily going to be the same for you. My husband who also is hypothyroid takes 125mcgms of T4 and has a resting pulse of 65-70 beats per minute and is good on that.I think for many of is quite a long journey to getting the right level of medication but aI think we know when we have arrived. Stick at it. Best of luck M.
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  • Posted

    Hi my lovely, Totally agree!! A drop of so much in one lump, totally irresponsible. Insist on being put on a dose between, eg-150 mcg. xxx
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  • Posted

    I'm going to see another GP there today to ask for my 175mcg back.... I was fine all but the overheating and in their words ' there is nothing we can do about that '
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  • Posted

    Don't go back to such a high dose, you need to drop because of the over heating but you need yo do it slowly, that was totally irresponsible of your doctor. Go back and ask for a second opinion to which you are entitled. Take things slowly.
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  • Posted

    I understand what you are saying, but I was on 175mcg for the whole 12yrs with only the overheating as a problem. This drop has come about by the first doctor in all that time to tell me 'that's not a side effect of the meds' and then drastically drop me down... I know its a 'side effect' to the treatment because all the other GPs have agreed and it says it on the warnings in the packets!

    At the moment, it's making me really ill; physically and mentally, to the point where I can't concentrate at work for more then 2 minutes. I need some stability rather than huge change, so if thats 175mcg then so be it

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  • Posted

    I'm 17 and I've got congential hypothyroidism which i was diagnosed with pretty much as soon as i was born, and i'm telling you right now, i've had every single side affect that they can cause, and i'm on 175mg too, trust me when i say that you will have up and down days whether you have your prescription changed or not. If a doctor says you need a certain dosage, its because the tests that they've done have indicated that this is what your body needs. I'm sorry to say, if you're living with this condition, you're going to have to suffer the side effects of the medication that comes alone with it. i've been dealing with them all of my life, my mood swings are horrific, my energy levels are low whether i get enough sleep or not, i have learning difficulties which link back to it (slow processing skills and very bad memory), i've recently obtained carpal tunnel syndrome, and also maybe cubital tunnel symdrome in my dominant hand (right) because of it, i've got the over heating problem quite bad. i very rarely get cold, but then when i eventually do get cold, it's horrible and it takes a lot to warm me back up, my lips have even gone slightly blue on more than one occasion... i gain weight constantly, pains in joints and muscles (in my knee, it got to the point i was put on crutches for over 8 months because my knee kept on collapsing under me, and i was given surgery to attempt to correct it), no matter if i take my correct dosage or not, i am always very confused and find it very hard to concentrate, to the point i almost quit college. i get randomly excited for no reason, headaches...

    you name a side effect, i've had it.. but you just have to learn to live with it and control it best you can....

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  • Posted

    Hmm ,, its so easy to jump about with regards what to do.

    Doctors are human beings, very much so, and for all doctors to know all the possibilities and corrections is 100% impossible, they are general medical practitioners not supersonic humans.

    Go sit in a docs waiting room and note which doc is calling them through quicker,, generally,, then avoid that doc or at least be dashed cautious.

    The job is to find a doctor who has passion about his/her work and also,, to read up about it yourself so you can have a sensible logical conversation, don’t be apprehensive in this regard.

    Walk together down the pathway to getting it resolved together, logically, remembering that the doc may have passed a medical exam but when it comes to disseminating information he or she may not be so good, after all and to be fair understanding all the intricacies is really quite a hell of a job, and they have generally 10 minutes,, then assuming they know all about it which they,,,, don’t,,,,,cant,,, its quite a task, cannot be done logically because of the variables, I am sure we all appreciate that.

    Dropping your dose or changing it in ANY way needs to be done with your docs blessing, walk together doing this and remember you’re the one who is the barometer of these changes.

    As you are aware different people suffer in different ways, because we are all different, and when it comes to the thyroid the permutations are quite massive. Its best to take your tablet at roughly the same time each day before eating anything and with water, its perhaps wise to avoid caffeine especially at this time, I take mine with decaf tea and 30 mins later have a normal instant coffee, no food yet,, but that’s me  .

    Avoid taking stimulants like coffee (caffeine) to much, stimulants heighten the senses and you can do without that.

    I have found over time (for me) that even splitting a 25 micro gram can be desirable, doing this by having 125 one day and 100 the next and so on can be the answer for some.

    If your heating up then I would say your on to much, (I was once) and I know what I would do, but you must do what YOU need to do hand in hand with your doc, your drop was quite a lot as some agree, but then 175 is a fair wack and I expect your doc took that into account, go back and try for 150 with the docs blessing, then remember that over time it may creep one way or the other, depending on you and your lifestyle, health etc. The old boy scout motto of “Be prepared” is wise. it may take more than the 6 weeks period to take real effect, keep trying, be patient (and patient ).

    Really long term its worth remembering that thyroxine has a half life of between 6 and 10 days (seven if you like) (lots of factors) and a half of a half of a half of a half goes on forever, never getting to zero, if indeed it’s a real half life. You can work out what that means.

    To quote the medical profession themselves the principal pharmacological effect of thyroid hormones is to increase the metabolic rate of body tissues, There may be a chap out there who it doesn’t make hot easily,,, there we go,,, we are all different,,, how do you know you are different,, you have to find out, go see your doc, one who you can talk to, its magic.

    Whatever you do, do it with your doctor, one who will listen, you can both learn. Good luck.

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