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Recent blood results were tsh 0.27 ant t4 12.4, I take 5mg of carbimazole daily but stopped about three weeks ago as my t4 was 8 I felt so underactive and miserable, doctor has advised now 5 mg od carbimazole every other day but I don't know why I still should be taking carbimazole if my levels are low, I was diagnosed with graves nearly two years ago and levels are up and down constantly

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  • Posted

    My GP says my diagnosis of Graves should include a parallel case of Hashimotos disease as my thyroid levels scatter wide , up and down...hyper, hypo....

    is it possible this is you as well? X

    my t4!has been 41 , down to 19 and back up.

    T3 is 30.8

    and TSH is 0.01

    thyroid antibody is extremely high at 971ku/ L

    all I know is I feel ill If I work, tired if I sit down and hyper all night!

    im asking for more tests, maybe a scan....

    youre not alone, hope,you don't feel that way xx

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    • Posted

      At present I feel under all time, cold , tired and little energy , I haven't hac over active symptoms in a long time only the eye problems , I don't really understand results at all, do these results suggest I am under, over or were, I don't know weather to keep taking medication that is making me feel worse 
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    • Posted

      You need to confirm if you have both Graves and Hashimoto's or either one alone.  People with Hashimoto's do better on a natural protocol.  I have Graves only and I started to improve when I added supplements to my Methimazole dose.  I was able to lower my Methimazole dose drastically after I added the supplements Regular L-Carnitine, Vitamin D and Magnesium. 
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    • Posted

      Speaking to specialist next week...

      i just want to feel a bit better , I'm tired, hyped up, itchy....

      im trying biotin, / complex b vitamins , and selenium, and Brazil nuts daily....

      any more ideas? X

      ps thanks! 

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  • Posted

    When posting labs, it is helpful to also post the ranges (usually they are in brackets beside your value).  Each lab differs.  If you are bouncing a lot, I would ask your doc to check your anti-TPO level and your TGAb antibody test for Hashimoto’s.  If you have Hashimoto’s alone or along with Graves, you would do better on a natural protocol and your levels would remain more stable with it.
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  • Posted

    Hello Joleene:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987. I know both sides pretty well.

    Graves is autoimmune like Hashi's is.  Certain protein antibodies attack the gland. They can be from a virus called Epstein-Barr or Mononucleosis.  Also a family trait runs in your DNA.

    Most scales for TSH are 0.45 to 4.50 and you are under that. So the low end means you still are Hyper on paper.  Now with Hashi's and Graves we can have swings or spells of too much hormone or too little.

    The doctor wants 5mg of the carbimazole every other day as he wants to curb it down as he knows it can swing.  The thyroid works 24/7 and it can make too much at times and since you do not want to feel the bad symptoms of Hyper he thinks to give you a low dose every other day should even you out.

    Of course it is hard to control, so the only true fix is to remove the thyroid and that is no good also. Sometimes they take 1/2 of it out. It depends. They try to use carbimazole first and in most people it can control it.

    You can go without it for a week and see how you feel or you could take it every other day. 

    As with Hyper thyroid people do not exercise or increase your heart rate.  Hyperthyroid or Graves can have palpitations and high heart rate that will not come down easily.

    Hyper symptoms are: High pulse, arrythmias,  insomnia, losing weight fast, Feeling HOT, anxiety, nervousness, jitters or shaking, loose bowels, eyes buldge. 

    Hypo:  weight gain, feels cold, low heart rate, low energy, brain foggy, sleepy or tired despite rest, bruising, muscle aches.  These are common ones and there are more.

    Any questions just ask,

    Regards,

    Shelly

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    • Posted

      Hi your post was helpful, I have graves alone, I have not had overactive symptoms in a long time only the eye symptoms, my face is puffy, eyes tongue is even swelled , I always feel much better when my levels are at a higher level but with keeping the carbimazole going it's staying down. I feel rubbish, eyes are bulging which doesn't help, I have tried supplements vitamins etc but it's not getting better. Docs have talked about radio iodine but I won't go this route as so afraid of were my eyes will go next,
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    • Posted

      Hello Joleene:

      Graves causes theyes to buldge out and can also make your face puffy. RAI, (radio active iodine) was designed to kill off cancer of the thyroid but it does destroy the thyroid gland and that would stop the Graves disease.

      This of course is after you tried Carbimazole.  This is a big decision because once you use RAI you can't get the thyroid back.  If you are losing vision or having severe problems from the Graves, then this would be an option for you to consider.

      Of course you will then need life-long thyroid replacement and in some people they need to do this.

      Any questions, just ask.

      Shelly

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    • Posted

      Hi, I seem to be having a graves  flare up, my eyes are really bulging and running sticky substance by evening my face is swelled and distorted, I don't know if this means my levels have changed or it's just normal for these symptoms to come and go , this is the worst I've experienced in at least a year and it's not subsiding I don't feel overactive symptoms at all except sleeping less but that is probably due to how stressed my eye symptoms make me feel, they are painful, swelled bulging and my face looks like I have dad a stroke at one side, any help would be greatly appreciated
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    • Posted

      Hello Joleene:

      Sometimes if you are still on the Carbimazole it can be related to that medication as a side effect.  If you are not on the Carbimazole then I would contact the doctor to see if it is a flare up of the Graves or a reaction to the medication.

      Did you have any change in the dose recently?  How long has it been occuring?

      If it is causing any major breathing problems or vision trouble please see an ER or A &E facility to check you out. Sometimes it can be an allergic reaction and that can be serious.

      Shelly

       

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    • Posted

      Yes I just started back on 5 mg of carbimazole as doctor advised every other day , I stooped it myself a month ago as my levels were very underactive and I felt terrible , I don't understand why they give you a tablet that aggravated the eye problems, this morning when I woke my face was swollen to an extreme size two puffy bulging eyes and tongue , it's only after 4-5 hours this subsides, my right eye is much bigger than left today , I feel tired , sore head, sore eyes and miserable, I also had started magnesium, selenium and vitamins, is it more likely to be the carbimazole causing this or could any of the vitamins be associated
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    • Posted

      Hello Joleene:

      Some people experience these side effects.  It is a shame that it happened. I think it is only related to the Carbimazole unless you have an allergy to any vitamins or minerals.  Did you eat anything new in your diet? Do you have any allergies?

      If it is going down that is a good sign, and it can also be your body changing in relation to the thyroid making too much hormone again or at least trying to make more. So when are you due for blood again?   This will tell if you are Hyper or becoming Hypo.

      Shelly

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  • Posted

    Yes I am aware of the issue with the iodine. I just don't know we're inam with the carbimazole sometimes I feel cold tired etc all the time even though on paper I am still overactive , 
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    • Posted

      People have posted to this Board who had RAI done and then developed Graves eye disease years later and deeply regreted having it done.  RAI is known to be bad for Graves eye disease. 

      I am wondering what supplements and vitamins you took because I and others have improved our outcomes with specific supplements? 

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    • Posted

      No it's not the route I wish to go down as my eyes have been my biggest issue , one is enlarged more than other and my features have changed with swelling face, I am so self conscious, I just take selenium and a multi vitamin. Any help to improve the way I look and feel would be great, also did you stop anything within your diet
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    • Posted

      Yes as far as diet goes, I avoid the artificial sweetener Aspartame.  It is known to aggravate Graves.  I limit my bread to the weekend and I eat only grainy, seedy 12 grain bread.  I mostly look for proteins, fruit and vegetables.  Selenium 200 mg is good to take but you want to get your Graves antibodies down.  Mine came down with taking besides a low dose of Methimazole, Regular L-Carnitine 3,000 mg daily, Acetyl-L-Carnitine, (lowest dose possible) Vitamin D, 1,000 IU per day and Magnesium 200 mg.  I would also seek out an Ocular specialist who can treat the eye disease if it worsens.  They are a specialist ophthalmologist.  My ophthalmologist gave me some names in case I would need them.
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