Best Treatment option for Graves?

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So the story is long to how I got here, but recently have been diagnosed w/ Graves after a thyroid storm out of no where. No prevoous thryoid issue, no family history. My doctor is treating me with/ Methimazole (started on high dose, have decreased sightly) and Propranolol. I get blood work weekly, but don't see him again for three months. I have read about Methimazole affecting liver, and my last blood work showed my levels were high. I went to a differnt doctor for a second opinion, his thoughts were much different: to STOP Propranolol and Methimazole IMMEDIATELY. He feels that methimazole is really bad for the liver even for temporary time frame. So, he prescribed Atenolol (50mg 2 tabs twice a day) as a replacement for propranolol. Im not entirely sure if he wants to stop the Methimazole simply bc of the liver, or in order to prepare for radioactive iodine therapy? Which I had explained to him, I needed to learn more about before proceeding. It's so confusing and frustrating because each doctor is different and every website and article is different. 2nd doctor says that new research says both Methimazole and PTU are both not good to be on during pregnancy, so my best option if I'd like to get pregnant in the next year or so, would be to do the Iodine therapy. My gynocolgoist seemed to agree. They put me back on birthcontrol, which i was reluctant, but they say its best until all is worked out.  Other research seems to show that risk of liver damange is rare w/ methimazole and that some people are able to take oral meds temporarily and then go into remission, with out radioactive iodine. Lastly, I have obviously read many risks associated w/ the radio active therapy....immediate effects of being isolated for up to a week, longer term effects such as dry mouth, upset stomach, persistent fatigue, lung problems, infertility, etc, not to mention the need to take a synthetic thyorid med?  Ahhh any help?? experiences w/ one treatment vs the other (specifically w/ Graves) and pros and cons?? 

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  • Posted

    Hi Heather - I belong to another Board and most of the people there are intent on keeping their thyroids.  I was diagnosed in 2007 and currently I am on 2.5 mg of Methimazole every other day with thyroid test values right where they are optimal.  What we have found is that Endocrinologists are not very knowledgeable about this disease and how best to treat it and push RAI way too much.  First of all, most of them place people on too high a dosage of Methimazole to begin with and it is the high dosages that cause the liver damage and the allergic reactions.  You can be on a much lower dose of Methimazole if you add supplements, especially Regular L-Carnitine, 3,000 to 4,000 mg and Vitamin D3 gelcaps 1,000 to 5,000 IU daily to start.  Also Magnesium, 200 mg and Curcumin and Omega 3 (preferrably from sources other than fish such as vegetable oils or nuts) to lower inflammation.  If  you have Graves eye problems, selenium helps although you should follow your levels of this as you do not want to get too high a level of this or you can eat 2 brazil nuts a day.  It is best to get your levels of Free and Total Carnitine, vitamin D and Magnesium & Selenium checked before you start with the replacements.  I and most patients are deficient in these vitamins,minerals and amino acids.  I took these along with my Methimazole dose (started at 10 mg and currently on 2.5 mg every other day).  There have been a few research studies done by a reputable Italian endocrinologist on the value of adding Regular L-Carnitine to the treatment of hyperthyroid patients.  These were done in Italy and published in reputable Endocrine Medical journals but I can tell you I have met no endocrinologists who will pick up on this because doctors will not update what they have been taught.  It is also important to follow a diet of non-processed foods (protein, fruits & vegetables) avoiding or minimizing gluten, and sugar and keeping your iodine level low by avoiding high iodine foods.  The docs don't know and don't care to learn about the benefit of the addition of supplements because that is not the medical "accepted standard of care".  They have been doing the same thing for the past 30 years to deal with Graves and do not have to learn anything new, so there are a lot of unhappy, unhealthy people who have been treated with RAI.  As a Graves patient, you need to become empowered, do your own research and learn all you can about this disease.  I blew my Endocrinologist away after I added a specific supplement that raised my TSH from less than 0.001 into the normal range when he couldn't.  Always ask for and obtain a paper or electronic copy of ALL lab tests that are done on you and learn what those values mean and the ideal level for you.  You can prevail and achieve remission, not damage your liver and feel good.
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    • Posted

      Linda, 

      Thank you so much for the info. I have always resisted medication when I am able to, I don't take ANY medication otherwise, until this. So it's been difficult to say the least, but trying to follow docotors orders until I know better at least. My original tests (during thyroid storm) were:

      Free Thyroxine Index: 12.6

      T3 Uptake: 44

      Thyroxine (T4): 28.7

      Thyroxine (T4) Free, Direct, S T4,Free(Direct) : greater than 7.7

      Creatinine Serum: Low

      Calcium, Serum: High

      Last week blood work only tested & showed:

      Thyroxine (T4) Free, Direct, S T4,Free(Direct) : 2.88 (reference 0.82 - 1.77) so getting closer to the normal range.

      However:Alt (Sgpt):  87      Ref range 0-32 IU/L

      Ast (Sgot): 69        Ref range 0-40 IU/L

      Creatinine levels still low

      I started on 60mg daily of methamizole for two weeks. Now they said to go down to 30 mg daily, but i am taking 20mg daily. 

      I do not see that they have tested any of the things you mentioned. However I do have a history of Vitamin D deficieny. The 2nd doctor has aslo prescribed VitD2 1.25mg 50,000 units gel caps- one a week.  Will have to research the difference between Vit D2 vs D3.

      I am vegetarian, boderline vegan but do eat small amout of dairy cheeses. Have started to cut some gluten. Otherwise mostly fruits, vegetables, grains, and nuts. 

      Awaiting my blood work done today. Interested to see where I am at. Really not sure what doctor will be on board with a less invasive treatment plan. I have not had much luck with that in the past when indicated that I don't want to take pills or high dosage if not needed. Have reached out to contact two hollistic doctors in the area to see if they treat Graves. 

      Again, appreciate the info. Thank you.

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    • Posted

      What was your TSH?  If you are on Regular L-Carnitine, you will not need high doses of Methimazole.  15 mg will do if you are on 3,000 to 4,000 L-Carnitine.  The next time you get blood drawn, ask for them to check your Liver tests and CBC along with TSH, Free T3 and Free T4.  You do not need regular T3 or T4.  Usually it takes at least 3 weeks to see a change in your labs after a change in dosage.  As far as a less invasive treatment plan, they know nothing about it.  I let my doc know about the L-Carnitine and showed him the literature to back it up, but other than that, he only takes care of the Methimazole and ordering tests.  My family doc ordered most of the vitamin tests.  I did not ask my doc's permission about the supplements because they know nothing about them.
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  • Posted

    Just want to thank everyone for their advice and comments. My boyfriend literally thinks I am nuts on here, but I think until you have a medical situation like this you don't really understand that you want to have all the knowledge you can from every angle. 

    So just wanted to update, that I was scheduled for RAI.  Was super nervous and was told no other options really. That since the methimazole was causing high liver levels that medication wasn't an option. I was off the medicine for 5 days- to "prep" for RAI, and saturday before the scheduled treatment, I had blood work, I kinda of panicked and "postponed" the treatment, like why the rush?? I got my blood work back and my thyroid levels were in normal range, liver levels had come down slightly. So i was put back on methimazole- this time only 5mg daily ( I was on 60mg a day prior during hyper/thyroid storm- like no wonder the liver levels were high) I kept asking if I lower dose, is there a chance liver will be ok and thyroid levels ok- everyone said no? but logically made sense to me? So now after 5more days back on medicine- thyroid levels still good, and liver levels almost back to normal! SO happy i decided to wait on the RAI. Praying I can control it this way and stay in normal range. Have to keep a close eye on it w blood work, but otherwise feeling soo much better and relieved that i dont need the RAI, at least not yet.

    Does anyone have any info or thoughts on Iodine? Have read alot about it , and different diets and how they may affect hyper and hypo thyroidism. 

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  • Posted

    Congratulations!  You are becoming an empowered patient.  Iodine is beneficial for people with HYPOthyroidism but needs to be limited in people with HYPERthyroidism.  There are also totally natural protocols to treat Graves.  There is a naturopath in the States who had Graves himself and got it under control strictly with a natural protocol.  Some of the natural treatments include Bugleweed, Motherwort and Melissa as well as the L-Carnitine and Vitamin D.
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