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Surgery or not?

Posted , 2 users are following.

jennielocke
jennielocke

Hello,

I was diagnosed with post natal depression soon after my son was born 2 years ago. While getting the right medication for that they also found out I had an overactive thyroid. Initially they thought it was a result of the pregnancy and when my results came down to within the "normal" range they took me off the medication. I then had a thyroid storm and was eventually put on PTU and diagnosed with Graves' disease. I have been on the ptu for 17months and my consultant weaned me off the tablets saying my results were stable. In the past 5 weeks the symptoms have started to come back and I can feel myself heading for another storm. I luckily got a cancelled appointment with my consultant yesterday who thinks I am having a relapse but did a blood test to confirm. I should get the results in the next week he said. He gave me the options of radioactive medication (but that would mean not being able to be near my son for 3 weeks), going back on another 12 months of medication or have surgery. My initial reaction is "get this thing out of me" but am I rushing in? Should I try more medication, perhaps a different one before going under the knife? Has anyone had the surgery? How long is the recovery? What happens afterwards?

1 like, 4 replies

4 Replies

  • linda187
    linda187 jennielocke

    Posted

    Has your doctor kept you on PTU because you are breast feeding?  PTU is usually offered to people who are pregnant, breast feeding or who cannot tolerate Methimazole.  To answer your question, if you destroyed your thyroid by either RAI or surgery, you would have to take synthetic thyroid hormone replacement the rest of your life.  Some people who have had RAI and had no eye disease at the time they had it done have gotten eye disease as much as 7 years after it was done.  Some people feel okay either having RAI or surgery and being on replacement hormone and many more do not and once either procedure is done, it is permanent, you cannot get your thyroid back.  

    I told my doctor I would not consider either of those two options and to give me the pills.  I have done well on Methimazole initially in the first 2 years normalizing my thyroid hormones but my TSH remained at less than 0.001 until I did some research and started adding supplements to my prescribed medical treatment.  It was this latter action that lowered my antibodies and raised my TSH.  I would not discontinue meds unless my antibodies have normalized as well.  There is another method called "Add Back" therapy.  This is accomplished by taking a low dose of antithyroid meds along with a low dose of thyroid hormone replacement therapy when all your lab tests have gotten into the normal range (similar to the Block and Replace method used in England but very low doses, not the high ones used in Block and Replace)..  Add Back is used at the Cleveland Clinic in the States and a lot of people don't know about it.

    • jennielocke
      jennielocke linda187

      Posted

      Hi, thank you for your reply. I had to give up breastfeeding before being diagniosed with an over active thyroid. I started on carbimazole, then when I came off that I had the thyroid storm and was put on ptu. I was told that was the best medication but never questioned if there was anything else out there. I've never heard of methimazole so will have a look and maybe ask to try that before going down the route of surgery.

    • linda187
      linda187 jennielocke

      Posted

      Methimazole is the generic name for the drug.  Trade name in North America is Tapazole and in England it is called Carbimazole.  It is all the same thing more or less.  It was the supplements I added that worked for me like Regular L-Carnitine, vitamin D and Magnesium that turned it around for me.  You can google the research paper by Dr. Salvatore Benvenga of Italy on the research he did on Hyperthyroidism and L-Carnitine.
    • jennielocke
      jennielocke linda187

      Posted

      Thank you, I will have a look at that before I make my decision.
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