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#1 April 22, 2020 07:35:23

mperry
Registered: 2020-02-25
Posts: 9
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Is there best practice Treatment for Toxic Multi nodular Goiter


My doctor told me the 3 treatment options for Multinodular Goiter. He said he has had patients on meds for 20 years to control the thyroid. It was my choice.

I don't feel like I have enough information. I am set up to talk with a surgeon consult to see what he says.

Is there a best practice treatment on this type of thyroid disease? I have a Fellow following my case and don't feel I have adequate support, but this is the second change I have made in doctors. I feel overwhelmed and still dealing with depression. Its difficult to make good decisions feeling this way.

I don't know if the medication will eventually resolve my issues and it is a wait and see or if surgery would take care of the issue altogether.

Any experience, insight or best practices that are out there would be helpful.

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#2 April 23, 2020 22:19:12

genuinruby
From: Reno, NV
Registered: 2009-02-24
Posts: 91
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Is there best practice Treatment for Toxic Multi nodular Goiter

Hi there- I am sorry you are struggling right now. All of our stories and situations are different with the only thing in common being a feeling of not being able to control our bodies betrayal. That being said, our treatments were also unique to each of us as were our feelings about which one to choose. Do check out all the options throughly- it will give you the peace of mind you need to choose the treatment you feel is best for you. Oh how I wrestled with the options. It took me 3 years to make up my mind. I chose surgery. Whether hyper or hypo, it affects the way we think, feel and behave. It was a very personal decision and even my husband refused to help me make up my mind. The one thing I knew was the crazy had to stop. Now it is nearly 10 years later. You too will feel good again soon. Hang in there.


“I'm not sick…just dancing. Two steps forward, one step back”~genuinruby
–Grave's diagnosis Sept. ‘07. Thyroidectomy Sept. ’10. To Hell and Back inbetween.–

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#3 April 24, 2020 19:56:53

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4166
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Is there best practice Treatment for Toxic Multi nodular Goiter

Hello - The American Thyroid Guidelines note that: “We suggest that patients with overtly TMNG or TA be treated with RAI therapy or thyroidectomy. On occasion, long-term, low-dose treatment with MMI may be appropriate.”

You can read the full document here - the section on TMNG is about halfway down.

https://www.liebertpub.com/doi/full/10.1089/thy.2016.0229


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#4 May 1, 2020 09:46:55

mperry
Registered: 2020-02-25
Posts: 9
Profile  

Is there best practice Treatment for Toxic Multi nodular Goiter

Thank you for sharing your journey. I have talked with one other graves patient and she did the surgery. She had pretty severe symptoms.

There seems to be controversy over if I just have toxic nodules or Graves or both. I am seeing a third specialist next week.

I had a consult with an endocrine surgeon and he recommended surgery for me. He said even when levels are normal on meds I would not feel like myself. Also, nodules can become cancerous. He seemed to disagree with the second diagnosis and wants to do an ultrasound.

It is so hard to hear many doctors opinions. This is the first one besides my primary care who seems to understand what I have been going through and how difficult this is. He told me being told insomnia was not related, was wrong. So, I at least I felt validated that this disease is causing my symptoms and that I am not just some psyche case.

Everyday is such a struggle. I have been on methemisole for 9 weeks. I still cry every day and feel foggy and depressed. I'm tired and unable to do much of anything.

The last doctor told me they were just concerned about getting numbers in range. They were not willing to consider all the symptoms I am still having, so I am seeing a third Endo. I have personal friends who have referred me based on their experience. I am hopeful he can sort my labs out and help me.

I have been having headaches every day, wondering if this is part of it?

Also, was it very difficult to get balanced on hormones? What was your experience after surgery?

Thank you

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#5 May 6, 2020 17:51:49

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4166
Profile  

Is there best practice Treatment for Toxic Multi nodular Goiter

Hello - Looks like AZGravesGuy responded on your other post.

This info will also hopefully be of interest - it's from the American Association of Endocrine Surgeons. (You will need to scroll down to see all the topics.)

https://collectedmed.com/index.php/directory/Coach_directory/articlelist/13075


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#6 May 12, 2020 09:01:46

mperry
Registered: 2020-02-25
Posts: 9
Profile  

Is there best practice Treatment for Toxic Multi nodular Goiter

Kimberly,
Thank you for the information. Very helpful.

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