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Thyroidectomy for Graves?

Posted , 6 users are following.

tammy50000
tammy50000

Has anyone gotten a thyroidectomy for Graves? The doctors seem to only talk about methimazole and RAI. I've been on mthimazole for 7 months, my numbers were steady for a few months then I went back to being hyper again! I'm very symptomatic and don't want to live like this for another year waiting for my thyroid to calm down and get RAI which will leave me on a roller coaster for another 4 months. Any advice?

1 like, 18 replies

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  • jean34329
    jean34329 tammy50000

    Posted

    I don't know. I am trying to find out what the management and treatment for a fluctuating thyroiditis is.

    I don't blame you for your reluctance to take the above drugs. Is RAI eadio active iodine?

    What was your TSh T3 and T4 when this was prescribed?

    Jean

    • tammy50000
      tammy50000 jean34329

      Posted

      Yes, RAI is radioactive iodine. My TSH was .001 when I was diagnosed. I was in the ER thinking I was having a heart attack. My irregular heartbeat still remains but the cardiologists just tells me that it's due to my thyroid.
    • jean34329
      jean34329 tammy50000

      Posted

      Tammy

      Sorry for askinng you again but did your cardiac problem deter the endo from giving you RAI etc.

      Jean x

    • jean34329
      jean34329

      Posted

      Tammy,Shelley, Barbara

      My TSH has been 0.17 then 0.17. Now 0.047.

      TPOA 16. Now 5.1

      Jean

    • tammy50000
      tammy50000 jean34329

      Posted

      The plan is for the methimazole to calm down the thyroid so I can get RAI. I am too unstable to do the RAI now since you have to stop taking the methimazole to get the RAI and the RAI could take 3-4 months to eradicate the thyroid.
  • linda187
    linda187 tammy50000

    Posted

    I belong to another Board where patients want to keep their thyroid.  If you do something like RAI or thyroidectomy, you can never reverse that if you don't feel good on the replacement hormone and a lot of people do not feel good on replacement hormone.  It's never as good as your own.  People there are going into remission using add back therapy (low dose methimazole and low dose levothyroxine combined) which helps to lower antibodies.  This method was developed at the Cleveland Clinic in the U.S.  A lot of people are changing their diets to avoid gluten, sugar and aspartame and eating fresh fruits, vegetables and proteins and say it makes a difference.  Many are taking their Methimazole along with supplements like L-Carnitine, Vitamin D, Magnesium, and Curcumin and Omega 3 for anti-inflammatory control.  Many are doing well in recovery.   I was diagnosed in 2007.  On 10 mg of Methimazole (same as Carbimazole in England) my FT3 and FT4 normalized in the upper part of the range but my TSH remained at less than 0.001 for 2 years until I read a research paper about the benefits of hyperthyroid patients using L-Carnitine, 3,000 to 4,000 mg a day.  I tried it and my TSH rose for the first time in two years to 0.10.  Then I tried Acetyl-L-Carnitine and my TSH just climbed very rapidly into the normal range, my Frees lowered a bit.  I was able to lower my dose of Methimazole.  A year ago, my TSH was 2.7 and my Frees at the bottom of the normal range so my Endo lowered my Methimazole to 2.5 mg a day and I stopped the Carntines and all my values remained stable including my antibodies which dropped into the normal range.  That is 8 years on a low dose of Methimazole plus supplements.  I still take supplements but not the Carnitines anymore because my Carnitine levels which were deficient, are now also in the normal range and I don't need them.  So it can be done but it takes a lot more than the medical treatment prescribed by your docs because they do not know about these other things and do not want to learn.
    • jean34329
      jean34329 linda187

      Posted

      Hi Linda

      I am new to this board.

      I agree with your comments about endos.

      Do you know anything about a fluctuating thyroiditis or is it a made up term by an endo surgeon who said the TSH was normal yet two months had been 0,17, four months ago it was 0.16.

      For some reason the diagnosis of multinodular goitre, subclinical hyperthyroidism, now fluctuating thyroiditis is scaring the you know what out of me. That plus peripheral neuropathy, low Vit D , aches and pains in joints and muscles plus planrar faciitis and stiffness of the muscles.

      This morning I have diarrhoea and feel like death warmed uup.

      Are you in the US by any chance. I am in England.

      Jean

       

    • jean34329
      jean34329 linda187

      Posted

      Hi Linda

      Could you private messaage me with the name of the board where people want to keep their thyroid please. Many thanks

      Jean

    • linda187
      linda187 jean34329

      Posted

      Goiters can cause the thyroiditis or even viral illnesses.  The ones with viral illnesses tend to be temporary and disappear.  Nodules tend to disappear with antithyroid meds like Methimazole (Carbimazole in UK).  Has your doc tested your antibodies for Graves and Hashimoto's?  It is not unusual to get slight variances in your lab results.  0.17 and 0.16 are essentially in the same range of hyper.  When treating, the TSH is not what they should be going by, they need to go by the FT3 and FT4 values and give antithyroid meds to normalize those values first.  It sounds like you can benefit a lot from taking supplements whether you are on antithyroid meds or not.  If not on meds, Bugleweed, Melissa and Motherwort,  These can be purchased separately at Health Food Stores. I think there is a preparation that combines them as well.  If you are on meds, you do not want to take the Bugleweed but the others are fine.  L-Carnitine, definitely vitamin D3 as most hyperthyroid patients are deficient in this, Magnesium and anti-inflammatory supplements like Omega 3 and Curcumin. 
    • linda187
      linda187 jean34329

      Posted

      Also diet is very important.  Avoid the artificial sweetener Aspartame at all costs.  Eat a healthy diet of fruits, vegetables and protein and generally non-processed foods, reduce or elminate sugar, gluten.
    • jean34329
      jean34329 linda187

      Posted

      Hi Linda

      Thanks for this info.

      I do have a low Vit D deficiency disorder. At one time the level was undetectable.

      I take D3 tablets 5,0000i.u about five times a week. Plus Adcal D3 800mgms twice a day.

      The target range to aim for has been set at a minimum of  75 nnomols/L.

      I also take magnesium combined with vitamin b6

       

    • jean34329
      jean34329 linda187

      Posted

      Hi Linda

      Thanks for this it is much appreciated.

      This is a very toxic substance used in many dietry and some medicinal products.

      I blame aspartame and severe dieting as a trigger for multiple illnesses etc.

      I was also given diet tablets by a dr at a diet clinic many years ago.

      I think that this combination of aspartame, dieting and diet tablets triggered off epileptic seizures, lightheadedness and pal[itations and possible thyroid damage.

      still I am much older and a bit wiser now so perhaps there is some hope for me.

      Kind regards

      Jean

      It is neurotoxic and can cause siures and brain damage.

      I avoid it like the plague.

      I am hypersensitive to a lot of medication including some brands.

       

  • sue83556
    sue83556 tammy50000

    Posted

    Anyone looked at trying LDN (low dose naltrexone), that's my next move. Doctors not interested, however so many people having such success using it. There's FB groups Thyroid LDN with very interesting posts about it.
    • linda187
      linda187 sue83556

      Posted

      I tried LDN and got severely depressed on it.  I have heard others did well on it.  I wrote the lady who wrote the book on it and she did not respond to me so I wasn't too happy about that.  So keep in mind, you won't know until you try it how it will work for you but it is not always what it claims to be.
    • Sue1247
      Sue1247 linda187

      Posted

      I also wrote about LDN and was told to watch the video on you tube. I don't feel the support is enough to try.
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