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    Old 09-04-2012, 07:02 AM   #1
    Gob
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    Unhappy I am newly diagnosed with Grave's disease &hypothyroidism

    Dear all,
    I have just only found this forum today via googling TSH...

    I am relatively newly diagnosed with Grave's disease &hypothyroidism. I have been using carbimazole at the moment & doing blood thyroid test every 4 weeks or so. It has been 3 month for now and I have been a steady decline in my T4 and T3.

    T4 now is in the normal lower end 12.9(10 - 22 normal in this lab).
    T3 same in the lower normal range.
    TSH < 0.03

    But the problem is TSH, is has been always almost been 0,no noticble increase.

    Because of this reason my carbimazole has been for 25mg per day for almost 1 month , before that was 20 mg per day.

    Now I don't see the hope of gradual recovery of my TSH, is it really takes about 12 to 18 month before I can start reduce carbimazole and when can I stop it ?

    Also does this therapy treatment(without I131) really have a very high rate of occurring at 40% to 60% even after remission ?

    Please help me by sharing your experience /story? I am panicking after 3 months already...


    Thanks a lot.
    Russell

     
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    Old 09-04-2012, 12:25 PM   #2
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Hello Gob, sorry to hear why you're here but glad you found the forum. It really is a brilliant source of information.

    Although I'm not the most knowledgeable person on here I can share what I know and tell you a little bit about my treatment so far. Hopefully you'll find it useful.

    Most people feel their best when the T4 is in the upper 3rd of the normal range. For your ranges that would be 19-22. So really, you've overshot that by quite a way and could possibly be having hypo symptoms. What symptoms do you have right now? How do you feel in general?

    The TSH will stay around 0 until you are ready for remission or you are overmedicated, which it sounds like you are being. 25mg is very high for your levels. Has the doc told you you're on a high dose because your TSH is low? With Graves the TSH will stay low for a very long time because of the antibodies, you can't solve this by taking more Carbimazole, that's just ridiculous. I'm currently on 10mg Carb per day to maintain my levels and have been doing so for about 6 months or so, my TSH is still 0. You should be lowering your dose not raising it.

    There are 2 treatment types with tablets; titration or block and replace. Do a google search to find the pros and cons of each. Although block and replace has a slightly higher remission rate it also involves extra tablets (Levo...something) at a higher dose, which can cause more side effects. With titration you just take the lowest possible dose of Carbimazole to keep your levels steady, it can vary between 2.5mg every 3rd day to 20mg per day. As your levels were dropping at 20mg per day you should probably be taking between 5-10mg a day, maybe less. Also are you dividing your dose? This will also help in healing.

    Time wise it could take 6 months or 5 years to go into remission, it depends enitrely on how your body responds. You may never go into remission. I'm not clued up on remission rates but know your chances are much higher when you don't smoke or consume a lot of salt and also wait until your TSH shows before you try to come off them. A raised TSH means you're nearing remission. Don't let the doc force you to come off until your body says it's ready, it will make relapse much more likely.

    There are other "permanent" treatment types; Radio iodine and Surgery. Both have many problems and are risky at best. Both could make you permanently hypo so it's best to try the tablets first and see if you go into remission. Read up on both now so you are more informed when the subject comes up later on. If you prefer to take Carbimazole for life you can do (my plan if remission fails).

    I'm going to link you to my very first post because there is a lovely lady called Sammy who answered a lot of my questions regarding Graves/Hyperthyroidism and you should find it very useful. Please ignore the angry posts about my useless Endo, he really annoyed me because he was pushing me into RAI or surgery. I'm not normally so mean. :P

    http://www.healthboards.com/boards/thyroid-disorders/878600-long-term-treatment-options-hyperthyroidism-graves.html

    Best of luck

    Sam

    x

     
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    Old 09-05-2012, 04:02 AM   #3
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Thanks Sam! Your answer is very helpful and informative!

    After reading your post and the link you added at the bottom I start to realize maybe my GP and specialist might not know what exactly they are doing!

    And I just realized that I would easily ended hypo if I keep following their instructions.

    Now I am not sure my specialist at hospital is an endo (specialist for thyroid disease called endocrinology) or not... The specialist I have been seeing(once per month) belong to a nuclear medicine department of a big hospital and he seems to be very keen to get me to do RAI ... Is there a good chance that he is not a endocrinology specialist but some other kind of specialist ? If so I really need to change my specialist to an endo, right?!

    Below is my story:

    I had anti body test against TSH receptor and it's positive so I must have Grave's disease. And I have a different anti body test (also thyroid related), sorry cannot remember the long name, but it's surprisingly negative.

    The concerned me most is that when my GP first referred me to the specialist in hospital, the specialist basically trying to use RAI immediately but I refused to follow rather I preferred the medicine therapy...

    The doctor and GP who referred me seems not too happy about it and they keeps telling me, it's ok you take Carbimazole now but most hype thyroid patient taking Carbimazole ends with hypo anyway, so why not use RAI now and just take one pill a day for the rest of your life... I am not happy with that, so I insist that I want to go on with medicine therapy.

    But even for medicine therapy, all I am getting is carbimazole...Nothing more.
    After having carbimazole for about 3 month, my T4 have seen steady dropping (test every 2-4 weeks).
    Initially it’s slow but now it seems to be dropping very fast, see below:
    T4: 48->45->39.9->20.8->12.8 (normal rage 10- 21)

    THS: No noticeable change, always < 0.01 or < 0.03

    I have started seen the specialist when I got my reading from 39.9... And the Carbimazole dosage was 20mg, after 4 weeks my T4 reading is 20.8, the specialist surprisingly want me to increase my Carbimazole to 25mg saying my T3 and T4 are just about to go into normal range but they are NOT low enough, so hence I must have increase my daily dosage to 25mg.

    Then I had my latest T4 reading 12.8 just last week after having Carbimazole 25mg for another 4 weeks, now it's to the lower end of normal range as 10 is lowest normal range, but this time the specialist only want to reduce my Carbimazole by 5mg saying you should have 20mg a day and keep it that way without tell me anything else at all.

    And the GP is even worse, after seeing him yesterday, he said how could the specialist reduce 5mg , he shouldn't do that because the TSH is still suppressed at 0, so he want to contact my specialist and see if he can get me back to 25mg daily again ! I have asked him if I keep taking this dosage would I go hypo as I am really close to the lowest boundary 10. He said yes, you shouldn’t go hypo when taking Carbimazole, it’s better to keep within normal rage. But again he wants to call specialist, see if he can try to get me back to 25mg instead of 20mg! Does this make sense at all?!

    Also regardless 25mg or 20mg, that seems to far too much then the maintenance dosage mentioned in this forum (5 to 10).
    And the specialist will not see my again in 4 weeks & I am really really worried that I will go hypo if I keep 25 or 20 dosage for another 4 weeks...

    Also the GP told me that don't divide the dosage(because I was asking would that help)as there is no benefit and he always tell his patients to take one dosage of Carbimazole in the morning, now it seems that's totally wrong ! I should divide my dosage evenly.
    More than that, the GP has told me there is nothing we can do other than give you Carbimazole for 18 month if you want to stick with medicine therapy (not RAI). He basically said there is nothing you can do but wait your body reset (exactly word) itself so the antibody of Grave's disease will go away... Neither GP nor my specialist at nuclear department have NEVER mentioned titration or block and replace treatment to me...

    I was convinced by them that ALL I need to do is taking Carbimazole and wait 18 months and I should never reduce my dosage until TSH has started rising again...
    This all seems wrong to me now after I read your reply and link. It seems TSH will not easily start raise for Grave’s disease specially when I am now with LOW T3 and T4 and keep a big dosage 20 or 25mg dosage...
    I am really panicking now, what should I do, it seems my GP and specialist don't want to help me but push me to RAI
    Please help.

    Sorry for the long story…
    Best Regards,
    Russell

     
    Old 09-05-2012, 08:10 AM   #4
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    hi there,

    your levels indicate hypoT (your T4 is in the low normal). so your dosage ATD(carbimazole) should not be increased yet lowered.

    To answer the question whether the endo and GP don't seem to know what they are doing. I have the idea indeed.
    Can only second everythng smergyl said.

    I have the idea your doctors are focussed on TSH and assume you still must be hyperT since it's low (suppressed). that's incorrect, dosing (carbimazole) should be done based on FT4 and you want to make sure your FT4 remains in the upper quarter of the normal ranges! HypoT (too low for the body's needs) increases antibody production (next to symptoms of course) and consequently is to be avoided and does not help in achieving remission of course (since antibodies are the start of the problem to begin with)

    The remission rates on ATD (anti thyroid drugs such as carbimazole) are high, yet again important is that the dosing is done properly.

    as you might know TSH is not an actual thyroid hormone, but thyroid stimulating hormone produced by the pituitary gland. FT4 and FT3 are actual thyroid hormones. Graves' antibodies are known to influence or falsely suppress TSH, so it's not a reliable factor for dosing.

    hang in there

     
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    Old 09-05-2012, 08:20 AM   #5
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    little sidenote: the doctor saying just do RAI and take a pill for the rest of your life, easy as that.

    If it were easy as that, there would not be all that many people one the board. RAI is an easy solution for them, but it does contain risks.
    that being said, a doctor who does not know how to dose properly before RAI, wont know how to after either.

     
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    Old 09-05-2012, 08:29 AM   #6
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Hi lisa789, thanks for the reply.
    I have actually just get off the phone with my specialist about 2 mins ago... I have told him my concern about plummet of my FT4 from 39.9->20.8->12.8 when taking 20mg & 25mg in the previous two months. I said I am worried as my current maintenance dosage is 20mg too high, and I said accordingly to my research , the maintenance dosage should be 5 -10mg,not 20mg.

    I also said my next check up is in early October (in another 4 weeks) and I would probably be 12.8-8 = 2.8ish , that would certainly be hypo...

    He just said I will be fine & he said everyone's maintenance dosage is different and he said I should stick with 20mg... Also just give him call if I really don’t feel well but I need to stick with 20mg instead of 5 or 10mg.

    Then I mentioned what I have learned from this forum that a health ppl's FT4 should be in the upper 3rd of normal range, but guess what he said??

    He said lower is better ! How could I communicate with a doctor like this?
    Is there any reason you can think that lower is better? Or he don't know what he is doing to me?!

    As I understand what lisa798 said lower FT4 means HypoT and that will increase anti body production which will get my HyperT even worse!

    I strongly feel that I am not in the good hand, what should I do ! The specialist I am seeing is already in a big hospital in London but he seem doing all sort of wrong things… Shall I ask my GP for a different opinion or what? But my GP looks don’t know what he’s doing either … I am helpless now, what should I do???

     
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    Old 09-05-2012, 08:47 AM   #7
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Yes you are totally right Lisa789 !
    I have read quite a few stories for ppl doing RAI and having problem with
    their dosage afterward, it’s tricky as well:

    Too much, gonna go HypeT again.
    Not enough , still HypoT !


    Quote:
    Originally Posted by lisa789 View Post
    little sidenote: the doctor saying just do RAI and take a pill for the rest of your life, easy as that.

    If it were easy as that, there would not be all that many people one the board. RAI is an easy solution for them, but it does contain risks.
    that being said, a doctor who does not know how to dose properly before RAI, wont know how to after either.

    Last edited by Gob; 09-05-2012 at 08:48 AM. Reason: typo

     
    Old 09-05-2012, 08:53 AM   #8
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    I'm sorry, for what it's worth hugs. as you might read on this board, it's not uncommon to need to see several doctors before one gets the right one.
    Unfortunately a big hospital or big name from doctor is no guarantee for proper thyroid care. (been there done that, I've been amazed - if that word is to be used) with the lack of knowledge).True every person's maintenance dosage is difference, yet does not change the dosing rule which should be applied. I think he wants your TSH to you up and does not seem to understand Graves.
    besides he's the same who suggests RAI?

    how are you feelig these days symptomwise? hyposymptoms? Doctors quite often don't understand the effect hypoT has on the person symptomwise.
    Anyway yes hypoT is to be avoided since it increases antibody production, so indeed to be avoided to achieve remission, to feel well and antibodies in graves can also cause TED (thyroid eye disease). that hypoT is to be avoided can be found in Williams' Textbook of Endocrinology.

    You might consider reading the book "Graves' disease a practical guide by E. Moore" (her website also contains a wealth of information).

    Can you consult another doctor? do you think your GP is willing to work with you? Can you ask him about the lower dosage and go from there?

    Hang in there and please although I understand your confusion, things will get better.

     
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    Old 09-05-2012, 09:26 AM   #9
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Thanks again lisa789 for your speedy answer & hug

    And I can confirm you are absolute right about what my doctors were thinking. Both my GP and my specialist(even specialist's nurse) have been addressing in the past few days when I trying to express my big dosage concern, they all basically said that you TSH are still pretty much suppressed(which is true as < 0.03), so no reduce to my dosage/or little reduce.

    My GP even had even bigger concern when I told him yesterday that my specialist recuded my dosage to 20 from 25, he had to call my specialist today to confirm/discuss that 20mg is correct not 25mg when my FT4 had already plummeted to lower normal range...

    It seems none of them under GD good enough to know that the higher 3rd in normal FT4 range is best of GD patient to heal, not lower(sad what he suggested).
    To your question, yes, it's the same specialist who suggest RAI in the first place the 1st he saw me ...

    I have take your advice and just booked the earliest GP appointment I can book, this Friday afternoon see If the GP would want to listen & reason with me and give a second specialist, maybe a real endocrinologist who knows what he is doing.



    Quote:
    Originally Posted by lisa789 View Post
    I'm sorry, for what it's worth hugs. as you might read on this board, it's not uncommon to need to see several doctors before one gets the right one.
    Unfortunately a big hospital or big name from doctor is no guarantee for proper thyroid care. (been there done that, I've been amazed - if that word is to be used) with the lack of knowledge).True every person's maintenance dosage is difference, yet does not change the dosing rule which should be applied. I think he wants your TSH to you up and does not seem to understand Graves.
    besides he's the same who suggests RAI?

    how are you feelig these days symptomwise? hyposymptoms? Doctors quite often don't understand the effect hypoT has on the person symptomwise.
    Anyway yes hypoT is to be avoided since it increases antibody production, so indeed to be avoided to achieve remission, to feel well and antibodies in graves can also cause TED (thyroid eye disease). that hypoT is to be avoided can be found in Williams' Textbook of Endocrinology.

    You might consider reading the book "Graves' disease a practical guide by E. Moore" (her website also contains a wealth of information).

    Can you consult another doctor? do you think your GP is willing to work with you? Can you ask him about the lower dosage and go from there?

    Hang in there and please although I understand your confusion, things will get better.

     
    Old 09-05-2012, 09:32 AM   #10
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    lisa789, sorry forget to thanks you for the book & web recommendation. I have just booked "Graves' disease a practical guide & Thyroid for Dummies. I have just also the have a look at the author's website as well, thanks very much indeed!

     
    Old 09-05-2012, 09:41 AM   #11
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    lisa789, I don't think I really have much hyposymptoms. Sometime I feel some occasional muscle pain but maybe that's normal... I do quite a bit walking everyday to maintain my sprit(like 8km everyday and even more on weekend), so I think my energy level so far is still ok (FT4 test is 12.8(10-20 normal) last Wednesday).

    I am just worried my next test in 4 weeks would give me a FT4 of 3 or 4(10-20 normal)...

     
    Old 09-05-2012, 01:16 PM   #12
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Sorry to hear about your useless doctors. It may be an Endo you're seeing or maybe your GP pushed you forward for RAI straight away and he does this. Either way they are both wanting to force your TSH up by giving you more Carbimazole... wrong!

    I would suggest seeing a different GP and not seeing this specialist again. I only work with my GP at the moment and things are ok that way. I tell my GP what my dose is, not the other way around. Maybe he thinks I'm being difficult, but that's not really my biggest concern. I was being seriously over-medicated before I took charge and felt crap. Now I go for my bloods, get the results, adjust my dose accordingly and inform the GP. 20mg is obviously too high for YOU as your levels were dropping at that dose, forget averages, it's too high for you. If you started taking 5mg you could then check your levels next time around and see if you've gone up or down and adjust. Your levels need to be raised again before you find your maintenance dose so the low end of what you need would be better and you can work up from there.


    You need to be proactive in your care because a lot of docs just don't know enough about thyroid problems, even less know about Graves' and what effects it has. I agree with Lisa re E.Moore, wonderful resource.

    Best of luck x

     
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    Old 09-05-2012, 03:26 PM   #13
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    Hi Sam,

    Thanks again for you reply. You and Lisa are both right ! Sorry for you over-medicated experience but I think you understand a lot about HyperT and GD now and I am glad you can guide your GP for everything & everything is going well. I don't think I am there yet.

    I have arrange the next earliest GP appointment this Friday afternoon hoping my useless GP would reason with me & refer me to a different endo rather than overmedicate me trying to push my TSH up ,wrong !

    The useless specialist really hurt me today by saying lower range is better and knowing I am going into HypoT without doing anything but pushing me into it

    Poor me everyday I am taking 20mg I am going hypoT sooner. I wish I was here at this forum in my previous previous test. When I was at the edge of normal 20.8(10-20), I shouldn't let the specialist add more dosage to 25mg and now ended in the lower normal range.

    As far as I can understand, the 1st time you Carbimazole push your T3 & T4 down into normal range, you should start reduce your Carbimazole to 5mg to test your maintenance dosage by letting your T3& T4 raise first? Is this correct ?

    Also as for changing GP I only changed GP before when I change my address. Can I in fact to go a different GP without changing my address ? And regardless how far it would be ? I have google a few good endo (suppose to be) in London, can I just ask my GP or my new GP to refer to the endo I want to see /at least the same hospital?

    Many Many Thanks
    Russell

    Last edited by Administrator; 09-06-2012 at 11:32 PM.

     
    Old 09-05-2012, 05:39 PM   #14
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    When I first found out about being hyper I went along with everything the doc said. I figured he knew what he was doing, he's a doctor afterall. It wasn't until he started pushing surgery/RAI that I started to read up on it and found out what I did. Lucky for me I wasn't quite in range at the time so my levels never went too low.

    See the GP on friday and ask about a referral to an endo. Say again that you need to be brought down to a maintenance dose as you're now in range. 20mg is too high as your levels were dropping on that dose. Say you would be more comfortable taking 5-10mg per day until you see the endo and see what they say. If you know of a good endo in your area then you can ask to be referred to them by your GP. You can change GP's any time you want. The surgery will have several GP's so you could try a different one at your current surgery or try a different surgery altogether. They will usually only see you if you live in their catchment area so it would have to be fairly close to where you live. If it's less than 3 miles away you should be ok.

    You're right about the timing of a maintenance dose, it should be lowered once your T3 and T4 go into the normal range, TSH has nothing to do with it. Dosing isn't an exact science and it may take a few months to find the right amount for you. Usually the dose is raised/lowered by 2.5mg per go. eg You take 5mg for 6 weeks and your T4 goes up, this means you need 2.5mg more per day, try that for 6 weeks then adjust again. Then keep changing a little at a time until your levels stay the same.

    Sam x

    Last edited by Administrator; 09-06-2012 at 11:34 PM.

     
    Old 09-05-2012, 11:01 PM   #15
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    Re: I am newly diagnosed with Grave's disease &hypothyroidism

    just a quick one:you write you should start reduce your Carbimazole to 5mg to test your maintenance dosage by letting your T3& T4 raise first? Is this correct ?

    Not sure whether you mean changing to 5 mcg? not sure, once levels are within ranges the dosage is reduced, but most of the times this is done in steps, let's say 10 mcg, retest.

    Yes it's not uncommon at all, your question will appear on her website once she answers the question.

    hang in there

    Last edited by lisa789; 09-05-2012 at 11:20 PM.

     
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