[mperry May 5, 2020 at 10:23 am Post count: 25]

#1061008

I have been on mm for 9 weeks and am struggling to deal with symptoms. I have toxic nodules and graves (i think), seeing a third specialist tomorrow. The last doctor said my thyroid levels were in normal normal, low TSH. Yet, I am not “alright” or able to live normally.

I consulted with an endocrine surgeon and he recommended TT. I am having to take anxiety meds, an antidepressant and a medicine for panic attacks. I wasn’t on any of this until all this started in January. The symptoms have been terrible.

My pcp said with as many problems with this as you have had, I should consider getting thyroid removed.

Could some of you who have had surgery weigh in on your experience? I keep reading about those who had problems after surgery with getting stabilized and regulated. I am interested in those who did well and what that journey looked liked. I don’t know alot other than what I see on the forum and talking to a person who had this. She did well after TT, but some of the stories on the forum really frighten me.

1. after surgery how long does it typically take to get regulated.

2. How do you determine which replacement med to choose? Is the pig thyroid med. good? I have a friend on this and she said she wanted that instead of something synthetic. She had a TT for hypo and they found a sliver of cancer.
3. I would like to hear how people felt right after surgery too. Did you feel better or worse? Hormone wise?
4. The forum has suggested thoroughly researching all options, where do you go to do that?
5. Can anyone weigh in on cost of meds. I heard synthroid is expensive.
6. I am concerned about longterm side effects of mm. Can anyone weigh in?
Thank you

[AzGravesGuy May 6, 2020 at 3:41 pm Post count: 160]

#1185743

Surgery was the best thing that ever happened to me.

I got my life back!

The anxiety and “crazy” went away as soon as that source of constant inflammation was finally removed. The change was nothing but astonishing.

I had a few bumps with regulation, started at 100mcg of Synthroid, and finally stabilizing at 175mcg. It took a year or two to get to 175. We adjusted as bloodwork and personal opinion dictated. I feel best on the higher end of the T4 range instead of dead center.

I pay $35 a month cash for Synthroid, not rung thru my insurance, at a small independent pharmacy. I have never had generic or Porcine derived, so I cannot speak to their reliability, safety, or effectiveness.

Waking up from surgery my throat was sore but with that inflammation causing, diseased organ gone, it felt like I had a big exhale. An inner calmness that hadn’t been there for the 8 years prior. Some say it was the post surgical drugs, lol, but I wasn’t given anything strong. After surgery they want you up and walking around as soon as possible.

I woke up with the anxious, disagreeable, irritable side of me missing. I don’t know how else to explain it. A big exhale, a new person. I just felt better upon waking up. After the failed RAI the year before…there was an all out war going on inside my body.

The war was finally over.

My larnyx was irritated by the intubation, that took some time to resolve. My voice was weak for about 2 months after but that is rare I’ve been told. Other than that, pretty smooth sailing post op.

Since surgery I’ve lost weight and gained muscle. Keto works for me. Carbs are delicious but overrated IMO. I’d rather have clothes that fit. Lol

I would recommend TT to anyone suffering mental effects from Graves’. It stopped the crazy real fast. Lol

Good luck in your journey. Keep us posted!

[Liz1967 May 7, 2020 at 5:10 pm Post count: 305]

#1185744

Everyone is different, but for me, the total thyroidectomy was easy. I had no problems, I felt fine and my levothyroxine dose was quickly regulated. I am within 8 micrograms of my initial dose and it has been 7 years since surgery. I have never used anything except generic levothyroxine. It costs nothing with my insurance, but about $15 a month if you had to pay for it without insurance. Methimazole is a drug. It has side effects, some serious. Levothyroxine is a hormone, chemically identical to what your body makes. I feel exactly as I did prior to Graves (except my eyes, I had thyroid eye disease and multiple eye surgeries). My TSH is checked about every 9 months or so and my internist monitors it, no endocrinologist needed. I use the search engine on Pubmed to find the latest publications and research on Graves. If not for some residual eye issues, I mostly forget I have Graves. I am careful to take the levo first thing in the morning and not eat for an hour after, as well as avoiding some supplements for 4 hours. That is it. I had my thyroid removed 6 months after diagnosis, wish I had done it immediately.

[mperry May 10, 2020 at 5:50 am Post count: 25]

#1185745

Thank you for your encouraging words and sharing the details of surgery and after. I want to feel normal again.

[mperry May 10, 2020 at 5:52 am Post count: 25]

#1185746

Thank you for your reply and for sharing the details of your journey. I was worried, going through surgery might not be better or even worse.
Thank you so much!

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