Oops. Sorry TSH.

Is undetectable
I have a tremendous amount of stress in my life that I'm unable to control. I am a caretaker for my adult severely autistic son he is violent and aggressive

I would love to hear advice from you regarding success stories or catastrophes for thyroid removal I am scared and confused thank you so much for your help

I had a total thyroidectomy and have never regretted it. It was the easiest surgery I have had (I have the eye disease for which I have had several surgeries). It took 45 minutes, I went home after an hour in the recovery room. No sore throat or hoarseness, no need to take calcium or vitamin d after. The scar was very small, healed quickly. I was back to normal in two days. Best of all, my labs were normal when tested two weeks postop. TSH came up immediately to normal range. I have had a few levothyroxine dose changes for variation within the normal range, more like fine tuning. I feel fine and I don't have to think about my thyroid levels, who has time to mess around with that. No worries about thyroid storm ever or the bad potential side effects from the meds. Be sure you find a surgeon who does a lot of thyroid removals. Ask how many he does a year. Good luck! Levothyroxine (I use the generic, not the name brand Synthroid) is easy to regulate and has no bad side effects. You just have to not eat for an hour after taking and no calcium supplements for four hours after so it is absorbed well,

Dear liz1967, wow this is amazing and exciting news!! I'm so tired of my thyroid spiking on its own. Any bit of stress and I start to shake and swear. I never feel normal anymore and I'm scared of thyroid storm What were your levels going into surgery? Were you volatile? Thank you for sharing your story. It gives me hope.

They will lower your levels a bit toward hypo before surgery plus have you take iodine to be sure you do not go into thyroid storm during surgery. My levels on methimazole were not awful, except when they gave me too much and I went way hypo. Never stable and tsh not measurable. I noticed on all the forums the majority of people feeling crummy and posting lots of labs were on anti thyroid drugs. I got a sore throat and the rush to get labs to rule out agranulocytosis scared me. Then I read studies indicating your antibodies for the eye disease were more likely to decrease a year after removal and I had severe eye involvement., an observation backed up by my thyroid surgeon. I never felt quite right either. It made sense to me that it would be hard to regulate hormone when you have a sick thyroid doing its own thing and only about fifty percent of people achieve remission, lots of those temporary. I am two years out from thyroidectomy and I feel like myself. You do have to mess around a bit with dose, but you know exactly how much T4 you are getting, no thyroid to suddenly make more on its own. The T4 you take as Synthroid or generic is like the T4 your body makes and is pretty nontoxic, unlike the antithyroid meds. As another benefit, although thyroid cancer is slow growing and treatable, never have to worry about that either. There are a number of Graves thyroidectomies who have their pathology show very early cancer. With the eye disease and the rehabilitative surgeries for that, I had enough to cope with without the ups and downs on methimazole and the worrying about labs. I do regulate dose by TSH, found frees to be not much help as long as normal range. I don't even think about that part any more because I feel like myself. Everyone is different but I found this to have worked best for me.

Hi:

No thyroid surgeries from my end.

I was just wondering if you have tried any other ATD (antithyroid drug) such as Methimazole to get your levels down?

Do you watch out for any dietary and environmental triggers with your thyroid issues? Such triggers include: MSG, aspartame, Iodine, cigarette smoke, etc? Stress I know it would be difficult due to your son's needs.

Usually the Free T3 is effected by such triggers above and other triggers such as the chemicals and toxins found in the household and personal products.

Even though the PTU taken is a Free T3/Free T4 med, it doesn't seem to make a difference to help lower down the FT3,especially.

Did you ever get put on any beta blockers Propranolol or Atenolol to help lower down the FT3?

How often is the PTU being taken?

Graves' Disease is so complex that working with being proactive such as learning to avoid all known triggers, labbing often, dosing meds properly, etc. If one doesn't take the steps to work this through now, difficulties can continue with another treatment such as the thyroid removal as mentioned. But this time would be learning how to do things properly with taking replacement meds
and not to go hypO.

Such information can help you with your researching and asking questions at:

elaine-moore.com

http://www.livingwithgravesdisease.com/forums/forum/2-thyroid-101/

{{{hugs}}}

Hi and thank you so much for all your help. I'll make sure I ask my doctor about taking Iodine prior to surgery to stabilize my levels. I haven't been stable since my dx in 2008. I jump up and down and have taken so much PTU over the years that it scares me. I wonder what effect it has on my liver long term. Thanks Liz1967.

mmztcass,

You are such an invaluable source of information!! To answer your questions: I tried Methamozole and had an allergy to it...I decided to revisit it recently and couldn't wait for it to take effect. I was so sick I wound up switching back to PTU..at least with PTU I feel immediate relief when I take each dose..then my thyroiid symptoms feel like they come fighting back until I take my dose again...the worse time for me is 2 am until 6 am or so. I have really high heartrates that wake me from sleep..I feel sick and nervous...sweating and take my meds praying they will work. When they don't I sometimes take more..I'm desperate for relief.

I take my PTU at least 3 times a day. It wears off quickly and I can feel it. I just had two major surgeries ...I was sick for an entire year and in and out of the hosptial with an infection in my colon that wouldn't go away (diverticulitis) I wound up needing my colon cut apart and a foot was removed (In august of this year). They stapled it back together.....I was in the hospital for a week and very sick...160 HR from my thyroid which was out of control The hospital staff didn't bring me my meds on time.or not enough so I wound up taking my own in my purse (I know a big no no but I felt like I was dying!) I had a second surgery because I was bleeding (leak) ..this was 2 weeks ago and since then I've lost a lot of blood and my thyroid once again raged out of control.

I don't know of any diet triggers..I do not smoke. I try to eat healthy but life doesn't always allow me the time to keep a food diary. I sometimes wonder if I am HYPO with a high heartrate. My FT3 is so high compared to my FT4 so it confuses me. All I know is I haven't felt well since 2008 and I'm tired of the dance ..tired of labs every 4 weeks since my dx ( I never achieved remission) Doctors have pressure me to remove my thyroid for years and I haven't made time.. having chest pain and fear I'm damaging my heart is what is making me reconsider. My colon doctor even voiced her concern and worried I could die if I don't remove my thyroid bc it's "so out of control" in her words...I ve been taking this high dose of PTU for a year now. from 900-1200 mgs.

Any advice, pointers...any help is appreciated. I am confused, lost, scared and tired of being and feeling sick all the time.

No one should have to feel that unwell for so long especially when there is a definitive fix. In the hands of an experienced surgeon, one who does lots of thyroidectomies for thyroid cancer and Graves, you should do just fine. You will be amazed how quickly you feel well. Your focus can change to living your life, not labs and your disease.

Forgot to mention the preop iodine makes the thyroid less vascular so less chance of bleeding. I think it is pretty standard.

Oh my goodness, so sorry for all of your health issues. That would be physically and emotionally exhausting... Hugs to you..

Regarding your methimazole allergy- what was the symptom of the allergy? Some people momentarily experience some symptoms only short-term, my legs were itchy for a week and it went away. My story is far different than yours but I didn't have any huge issues with methimazole- except for the fact they overdosed me into a TSH of 15.

TSH shouldn't be looked at as closely as the frees. Reason being is that our Graves antibodies skew the results of our TSH. Not only that, TSH changes throughout the day, if my memory is correct, it decreases as the day goes by.

With all that being said, your labs are all over the place and your thyroid is certainly not being controlled. Have you always had the same doctor? I have seen 5 and as I'm currently lucky to be in remission, all of those docs aren't quite as versed on thyroid as I would desire, but I feel like if something comes up that I can get what I need between all of them.

I always said that if it all hits the fan that I would get a thyroidectomy over RAI any day. If thyroidectomy is what is going to work best for you, if I were you I would do exactly what you are presently doing; get all of the info that you can. I would also shop around for doctors and have multiple opinions. Then, when all of that info is in front of me I would make the decision, take the leap, and don't look back. Best of luck to you :)

Hi:

If it were me, I'd take the steps to be proactive with my thyroid health. At the other board I moderate at and teaching this here, we work on learning what to do with our thyroid health as this is a life long disease with this being an autoimmune disorder.

I have had GD since the end of 2001. I first tried natural therapies, however I went hypER (likely because my thyroid antibodies rose) which I certainly didn't understand about dietary and environmental triggers to help with keeping my FT3 down. I was hospitalized and put on the MMI (Methimazole) since 2003.

Because I have several autoimmune diseases, I have not been able to strive for remission with my Graves' Disease. Instead I continue eating healthy (organic) with less processed foods as possible and am able to take very small dose of MMI. Approximately 1.875 mg per day currently right now.

I would definitely get in touch with Elaine, read all the articles and understand about the dietary and environmental triggers to help lower down the levels, Look at what kind of household and personal products are being used (laundry, cleaning, deodorants, shampoos, etc.) I had to go organic as possible with these items in order to do well.

{{{hugs}}}

To add, I completely agree with mmztcass and investigating triggers. Many may disregard the importance of this, our society is certainly one that may overlook this and go to conventional medicine. These "little" things can make a big difference.

I think that a big point that is missed here, that mmztcass has brought up, is that our disease makes our thyroid the victim and scapegoat of our symptoms/ailments. Truly, it is our immune systems that are attacking the thyroid, Graves is an autoimmune disease, one that attacks the thyroid- not really a "thyroid disease", if that makes sense. Even with our thyroid being medicated/ablated/taken out, we all will still have this disease. No cures, just management.

Environmental triggers can also harm our bodies more than just kicking off Graves symptoms. I eat organic, non GMO, limit processed foods, minimal caffeine and alcohol, etc. I also clean my home with all natural products and for personal/beauty items, as with everything else in my home, it is fragrance free and as natural as possible. I also have made sure I have enough selenium (through brazil nuts) and increased my omega 3 intake from a study I have read about it possibly keeping Graves at bay postpartum, as a new(er) mom. My husband also has crazy topical allergies, so he benefits from this as well. Plus, if these kids of mine are genetically set up for something, I figure I'm covering my bases here :)

We need to treat our immune systems with care and decrease the odds of starting an immune response.

Furthermore, I would 100% contact Elaine Moore, as mmztcass suggested, before making any permanent decisions. Like I said previously, keep on gathering that info before you make a big decision, that way there is no regrets :)

liz1967, Thank you so much for all your help. I am inspired by your success story and really do appreciate all the information you've shared. So glad to hear you're on the road to wellness :)

mmztcass and cougar2010,

I must admit to invested 0 time in thinking about my thyroid health, possible triggers. I spend my days overwhelmed from the crisis that my son's mental health presents daily..he is violent, has OCD, newly dx bipolar on top of severe autism and he leaves me no free time at all .

I can't tell you enough how much I appreciate your advice and help. I am going to make a concerted effort to attempt to learn more about my thyroid prior to surgery.

I would venture to guess that stress plays a large role in my disorder and I'm definitely not able to control that part of my life If I tried to describe a day in my life you would all be horrified....

Thanks for all your help...about to jump onto Elaine Moore's sight for more info

I am also against surgery, but if I was having this issue I would probably do it. It has been almost 8 years and it is not getting better.
It is a tough decision...