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    Old 09-06-2012, 05:23 AM   #16
    Gob
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Thanks for the reply Sam and Lisa !

    I have been doing a lot of research last night and I think I am in HypoT already
    And still with official heave dosage of 20 (just being lower from 25 !)

    So I am not sure what's the correct dosage for me to try at the moment & as you have pointed out this is not hard science.

    So for me from 25mg(yesterday) to lower to a dosage I should try today, it seems a big leap if I lower it to 5mg per day, also I understand to fight GD, it needs to be slow. It's just I had already been overmedicated to 12.8(10-20).

    Since I am HyperT already , I think I should do in two stages:
    1>My first target would be raise my Ft4 to upper 3rd of the range (2nd target: then try to find my maintenance dosage).

    I have come up a few dosage plans to get to target one, but I am not experienced enough to choose the best one, can you please help me?
    • 25->15 per day (minus 10 from existing, but this might not be enough for stop Ft4 from keep dropping)
    • 25->12.5 per day(half of existing)
    • 25->10 per day (upper bound of normal maintanance dosage)
    • 25->5 per day(since I had been overmediated, so 5 would be good for my FT4 to raise to upper 3rd of normal range)

    2>Some study have suggest during maintenance dosage finding process (when I hit upper 3rd of normal range), I should access to lab every 2 weeks instead of every 4 weeks, by tuning my dosage up/down 2.5mg each time until I found a suitable one to keep my Ft4 in the upper 3rd of range, does this mean sense ?

    Many Many Thanks
    Russell

     
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    Old 09-06-2012, 06:23 AM   #17
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    I cannot predict which will end up to be your maitenance dose.
    For me, the last one would not be an option, slow and steady wins the race. I'd probably opt for 15 or 10 mcg and go from there.

    4 weeks is already rather quick so would not go to 2 weeks. It does need time to reflect in the blood.


     
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    Old 09-06-2012, 11:34 AM   #18
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Hi Lisa,

    I have down some more research today and I think you are definitely right about 15 or 10mg per day for my next dosage. What do you think about 12.5mg per day? Would it be any better than 15 or 10 at all ? or it doesn't matter If I choose 15 or 12.5 ?

    Also I have read in this forum that I should split my Carbimazole into 2 or 3 times ago and from what I have read, 3 times is even better but maybe I could forget.

    Could you tell me what’s the best time to eat Carbimazole if I decide to eat it twice a day?
    Is it every 10 hours from getting up ?

    How about if I want to eat it 3 times day ?
    Is it every 6 hours from getting up?

    BTW do you have good pill cutter to recommend that would suitable for the tiny round Carbimazole pill?

    Thanks a lot !
    Russell

     
    Old 09-06-2012, 12:15 PM   #19
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    I think 12.5 mcg could work too, at this point I think the most important thing is that it's lowered, where exactly the FT4 will end up, I don't dare to start to guess on that. I think coming from 25 mcg a decrease till 15 or 12.5 would make sense.

    I'm not quite sure (if you have the link I'll be happy to check) to my knowledge carbimazole can be taken once a day, some do split it in 2 dosages a day. best is to even things out/spread it and be consistent. Not sure when exactly but think like once every 12 hours would make sense, like 7am and 7pm (just an example really)

    A good pillcutter, think at the drugstore/pharmacist one should have a pillcutter and it's cheap (like a couple of bucks) and worth every penny. not sure how tiny carbimazole is, I'm on PTU myself and not exactly the most handy tablets either, but if one wants there is a way. a pillcutter sure comes in handy (without it's mission impossible).

    hang in there

     
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    Old 09-06-2012, 01:58 PM   #20
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    I should probably drop out now because my knowledge base has dried up :P.

    I would personally drop to 5mg from 25mg but the only reason I say that is because you're already at the bottom end of normal, there's no room for you to drop any more while you find the right dose. However small changes are always best, 2.5/1.25mg at a time.

    Carbimazole has a 6-8 hour half-life, half of the dose is used up within 6-8 hours of taking it and the entire dose is used up within 12-16 hours of taking it. So in an ideal world, 1/3 of your daily dose every 8 hours would provide more even coverage. I only split in two, 12pm and 12am because it's easier for me to remember. I got my pill cutter on ebay, think it was £2 and does the job.

    Wishing you the best of luck x

     
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    Old 09-06-2012, 02:55 PM   #21
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Thanks Lisa and Sam ! I have found a lot of supports here. One day ago I was panicking like hell, now I am much better now, all thanks to you two and this forum !

    Today is the first day I reduce my dosage from 25 to 15mg(only one day 20 yesterday) after considering all your guys advice and also from what I have been study.

    It's seems to be the first drop normally bigger, then subsequently smaller adjustment to mainly my Ft4 in the upper mid.

    Now fingers crossed how my Ft4 would change from 12.8(10-20 normal) via 15 mg per day.

    I will post back my lab results in 2 to 4 weeks, will keep you guys posted.

    I cannot thanks you guys enough for supporting me and encourage me !

    Cheers
    Russell

     
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    Old 09-07-2012, 08:48 AM   #22
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Thanks for your supports & hugs !
    I have just seen my GP 10 mins ago with my big stack of print out(papers & journals of GD, ATD dosage management etc) trying to discuss with my GP after I personally reduced my dosage from 25 to 15 which is strongly against my specialist who insist that 20 is the minimum I can go at my stage.

    I basically told him that I have put on some weight back and concerned about my ft4 12.8 (10-20) being in HopyT stage already, so I have reduced my dosage to 15mg myself.

    Then I started talking from top stack of the paper about 'TSH not related with CZB dosage management', just starting with the 2nd paper, he said he understand that I have been overmedicated to HypoT and 15mg is very resonable dosage for my situation!

    This all happend within 3 mins.

    How come now he understand!??? Maybe he doesn’t. He didn’t agree ,not even in the previous consultation with same result of ft4 being 12.8 !

    And I said I should stop putting on weight by not taking too much CZB and he gave me a lot of small dosage pill of CZB instead of big ones he use to give me saying this would help me with my 15mg per day dosage.

    Also he agrees with my 2 weeks short period(normally 4 weeks) blood test as I worried about the direction of my Ft4 being shooting below 10.

    I dont' know how come all of sudden he become a savvy doctor know something about HyperT and GD ,being very co-operative !

    I also talk about he was being pushy about RAI and I also said that's like almost the 1st choice in the USA, he immediately said that's because it's cheaper for the doctor in the US, because fewer follow up consultations ...
    I am a lot happier than before because my GP is finally on board(sort of anyway), not sure if he really understand or he just start to follow my instructions/dosage that I got from this forum.

    Anyway, since the test in two weeks had been booked by him, I will certainly post my result back as soon as I get it, hopefully I can then instruct him with the new dosage again

    Thank you guys, specially Sam and Lisa !

    Russell

    Last edited by Gob; 09-07-2012 at 08:49 AM. Reason: typo

     
    Old 09-07-2012, 10:34 AM   #23
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Glad things went well with your GP, did you ask to be sent to an Endo or are you just going to see the GP in future? 2 weeks is a bit quick for the bloods and it may not be very accurate, but in your situation I would be wary about my T4 dropping any lower.

    In some ways I can't really be too hard on my GP, he has to know about a hell of a lot of diseases, I only have to know about 1. Endo's on the otherhand, it's their speciality, there's no excuse for them not to know what they're doing.

    Just had another look at your T4 levels and the drops weren't very significant so I think you'll probably find 20mg wasn't too far off at all. (48->45->39.9 on 20mg) means your maintenance dose will probably be between 12.5 and 17.5mg per day. Dropping to 15mg may raise your levels a bit which is good, I would probably be tempted to stay on that dose even if your levels raise slightly to give your T4 chance to raise to the upper 3rd of the range. If they drop further then maybe a dose reduction to 12.5mg would be warranted?

    Like I said before though, my knowledge on the subject really isn't that vast so do your own reading and learn how to guide your GP on doses and I'm sure you'll be fine.

    Sam x

     
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    Old 09-07-2012, 11:19 AM   #24
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Thanks for reply Sam!

    Yea but it's the endo that really made me sad now all of a sudden, my GP seems ok.

    For 48->45->39.9 was probably a 2 -4 week test & was on 30mg per day( 10mg 3 times a day) in a different hospital abroad... I caught this issue when I was on holiday, really scary experience...

    My ft4 reading back home was starting from :
    • 39.9 to 30(sorry if I missed a link here) on 20mg in about 4 weeks
    • 30 to 20.8 on 20mg in 4 weeks
    • 20 to 12.8(last Wednesday's test) on 25mg in 3 weeks

    After reading so many net info, I have started to realize in a ideal world my endo should ask me to reduce my dosage from 20 to 15 when my ft4 hit 20.8 mark as it's getting normal, then my next reading with 15mg in 4 weeks might just nicely lands in the upper 3rd of the range, 16ish…

    Instead, he asked me to increase dosage from 20 to 25mg which doesn't make any sense to me now ! I was discussing with him trying to lower my dosage or at least stay on 20mg when my ft4 hit 20.8. But he insist the I should use 25mg quoting his original word 'you didn't drop enough !'.

    If I knew all those I would never have agreed that 25mg when my ft4 just dropped to 20.8 from 30.8 & I would in a better position, not putting so much weight on etc...

    There seems only one explanation he always insists: he tried to overmedicated as a preparation of RAI, not sure if HyperT patient is better overmedicated before RAI... Is this true?
    But I never wanted to go RAI; I want to follow ATD treatment...

    Also he insisted my 20 dosage again yesterday despite my phone call when my ft4 is 12.8.

    This time I didn't agree with him with the backup of you guys and now my GP agrees with me quoting his original words today '15 mg is very very resonable & I shouldn't stay HypoT'. And my GP hopes I can stop putting on more weight by reducing my dosage to 15mg. He said hopefully from now on I could get even out, I guess that means I don’t lose weight because of my HyperT or putting on weight because of HypoT. This all makes sense to me.

    Anyway, starting yesterday I am on 15mg and everyone agrees with that apart from endo, which is so so sad, he suppose to be the specialist knows most. I am gonna see him one more time before I quit on him, if he mess up one more time pushing RAI ( which he would probably will), I will stop seeing him completely & ask my GP for a new referral.
    Many Thanks
    Russell

     
    Old 09-07-2012, 12:02 PM   #25
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    I have the feeling that he's not an Endo, truth be told, I don't know what he is, maybe you should ask him?

    29.9->30->20.8 is pretty fast on 20mg. Going on that I would guess you should eventually be on 5-10mg.

    He should have lowered after 20.8 but he didn't so all you can do now is try to fix it. 15mg should be fine for 2 weeks but you'll probably drop again at that, just not by such a high amount.

    They do try and lower the T4 ready for RAI, again, not sure why they do this. It looks like that was the intention though.

    Sam x

     
    Old 09-07-2012, 05:38 PM   #26
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Hi Sam,
    Thanks for the reply ! Yes my endo (fake !) should lowered my dosage to 15 when I hit ft4 20 mark, but instead I quote his original word "you didn't drop low enough" so hence raise my dosage to 25mg. Now thinking back I think you are right, he still trying to push RAI and overmedicate as preparation ! But this is behind my back as I strongly against RAI and he always talk to me that you don't have to make decision now, but still he has been trying to push me to RAI behind my back !

    Without you guys support I would probably have gone into HypoT and feel so bad, and may eventually go along with RAI as I don't have much choice as the doctor expected...

    So thank you again !

    I will certainly report back in two weeks time with my latest lab results. I don't think it would be a good ft4 value if the dosage and ft4 reduction are in linear.

    I had take on more week of 25mg after previous test(12.8 ft4) before seeing my endo this Monday. I only started taking 15mg from 5th. And my next test is 20th and the result would be in last week of September, so I think I could easily ended with ft4 value 8 if I keeps taking 15mg for the next 2.5 half weeks ...

     
    Old 09-11-2012, 05:40 PM   #27
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Sorry forget to mention,when I was asking about GP to do test so I can have ft3, ft4 & TSH, he said normally I don't need ft3, only ft4 and TSH for me and I somehow said fine...

    But somehow I know ft3 is also important, why he don't want to do it for me with the same amount of blood ??? He did it for 3 times (ft3,ft4 &TSH) but since the last time , there is no ft3 anymore...

    I am not sure if he have any valid reason, he mentioned ft3 is only needed for certain condition like something toxic ?

    Many thanks
    Russell

     
    Old 09-13-2012, 11:26 AM   #28
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Hi Guys,
    I am not sure if I can still hang in there till my next blood test as I am experiencing more & more muscle cramp. For example I have just tried to move my neck a bit after a whole day's job sitting there I had a cramp at my neck.
    Yesterday, I was trying to move my shoulder just a little and I had a muscle cramp. The cramp I have been have are really painful & I am having like average 1-2 twice a day

    I guess my ft4 reading must be 9ish now, should I reduce my Carbimazole dosage(currently 15mg) to 10 or even lower now ?

    Many Thanks
    Russell

     
    Old 09-13-2012, 11:54 AM   #29
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    unfortunately that's the low FT4 or hypoT you're feeling. with those levels was likely to happen although of course would have been better not too. hugs

    Does not necessarily mean your FT4 dropped even more though, your FT4 was low enough to cause symptoms (it surprised me it did not yet at the time). sometimes symptoms follow after levels hit/kick in so to speak. ATD dosage changes also need time so *me* would not do anything yet, have your blood checked as planned and go from there. if you lower the dosage too much too soon you might end up hyper again.

    for the muscle pain maybe you want to check in boswellia and magnesium in the meantime, of course neither one solves the problem but sometimes it might ease a bit.

    hang in there.

     
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    Old 09-13-2012, 12:09 PM   #30
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Lisa thanks for the quick reply. I have been having those for the past few weeks it's just I didn't know it's sign of Hypo until I realized today, I was stupid to think that's nothing, but starting past week, it's gets to a stage it only takes minor movement(like move your neck) to get the really bad cramp that's why I am posting here ...

    I am worried that my Hypo is getting worse.
    My last test was about 2 weeks ago 29th August, the ft4 result was 12.8(10 - 20 normal).

    After that I have had
    1>one more weeks of 25mg (while waiting for the 12.8 result);
    2>one weeks of 15mg till yesterday.

    Now it's the starting of 3rd week since 12.8 & I am thinking that my ft4 must be below 10 or 9...
    That's why I am having increasing symptom of HypoT

    I am considering a reading sooner than 20th of September (though I know it takes time for ATD to work like 4 weeks), but I might just need a test to calm myself down ...

    Many thanks
    Russell

     
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