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lynnybug55 09-30-2008 11:35 AM

hyperthyroidism treatment options
 
Another newbie! Just diagnosed with hyperthyroidism and nodules. Have a CT scan with contrast scheduled in 3 days, with follow-up appointment with ENT to review and talk about options. We don't have an endo here. My ENT asked me to research PTU and tho--- (can't remember other drug name!) I did, and the side effects were very scary. I'm also terrified of surgery, and just don't like the idea of "killing" a gland that controls so many important organs. Can anyone share their experience with various treatments? Pros & cons? Has anyone tried any supplements? Thanks for any help or advise you can give.

tami71 10-01-2008 09:47 AM

Re: hyperthyroidism treatment options
 
[QUOTE=lynnybug55;3746450]Another newbie! Just diagnosed with hyperthyroidism and nodules. Have a CT scan with contrast scheduled in 3 days, with follow-up appointment with ENT to review and talk about options. We don't have an endo here. My ENT asked me to research PTU and tho--- (can't remember other drug name!) I did, and the side effects were very scary. I'm also terrified of surgery, and just don't like the idea of "killing" a gland that controls so many important organs. Can anyone share their experience with various treatments? Pros & cons? Has anyone tried any supplements? Thanks for any help or advise you can give.[/QUOTE]

tami71 10-01-2008 09:55 AM

Re: hyperthyroidism treatment options
 

Hi. I am hyperthyroid with nodules also. I have tried ptu and methimazole. I broke out in hives and could not take it. I did not have any trouble with it lowering by white blood count or affecting my liver. I am now in the process of talking to a surgeon. I too am terrified of surgery. I have never had surgery before, but I want the piece of mind knowing if it is cancer or not. Good luck with what ever you decide!
Tami

lynnybug55 10-01-2008 10:14 AM

Re: hyperthyroidism treatment options
 
Thanks, Tami. Have you had a needle biopsy? That's something else that was mentioned when I first met with the ENT.

GravesGirl73 10-01-2008 04:46 PM

Re: hyperthyroidism treatment options
 
Hi! I have been on Methimazole for 2 years. no serious side effects at all, they are rare. I have no nodules, just mild Graves.You can always try meds to buy you time before a permanent decision. I know many on them for as long as me or more.

lynnybug55 10-02-2008 10:12 AM

Re: hyperthyroidism treatment options
 
So you think it's "better" than PTU? Do you know anything about any supplements that are good for hyper?

lynnybug55 10-02-2008 12:56 PM

Re: hyperthyroidism treatment options
 
Is anyone familiar with any diet or supplement regimens that are successful in treating hyperthyroidism?

GravesGirl73 10-02-2008 02:54 PM

Re: hyperthyroidism treatment options
 
My doctor chose methimazole for me. I think it's generally well tolerated by many, although ptu can be used while you're pregnant or nursing. As far as a diet or something, you have to avoid iodine, at least till you're well controlled. Our hyperactive thyroids eat up the iodine and makes us hyper. I take a whole slew of vitamins and stuff..cal/mag,folate,b-12,b-6,d,beta carotene,flaxseed capsules,copper(the research shows most hypers are lacking in this at first anyway. I just found this out and started taking it. We should avoid zinc at first too, we usually have more zinc than copper. You can ask to have these tested.I also take CO-Q 10.There might be more, I'm not in the kitchen to check.hahaha.I don't think personally that it can be controlled with vitamins, but I feel better. There have been some that swear by the holistic approach, but you have to still be under a dcotor's care. Accupuncture too has helped some.

tami71 10-03-2008 06:04 AM

Re: hyperthyroidism treatment options
 
[QUOTE=lynnybug55;3747617]Thanks, Tami. Have you had a needle biopsy? That's something else that was mentioned when I first met with the ENT.[/QUOTE]
Hi Lynnybug, sorry I haven't been on here in a while. I have had a needle biopsy of one of my nodules. It was a cold nodule that was 1 cm. and it was benign. The other two haven't been biopsied. I am still worried about those so I have chosen surgery over RAI.
My hot nodule is 3.2 cm. and I think it is growing so I want them out. I had a VERY hard time coming to this decision. I have done lots of research. I have been to natural doctors also but can't find anyone with any experience dealing with nodules. I think I possibly could have treated the hyper symptoms that way, but the nodules are what they didn't seem to know what would help them shrink.
I am going to a surgeon in Charleston SC on Monday that does endoscopic thyroid surgeries. It is a less invasive way of having thyroid surgery they only make in incision of 1/2 inch versus 1 1/2 inches. I have been trying to find a surgeon that does this. I finally did and am going for a consultation Monday.
Take care, if you have any more question feel free to ask.
Tami

lynnybug55 10-03-2008 10:24 AM

Re: hyperthyroidism treatment options
 
Thank you both for your replies. They are very helpful. I had the thyroid CT scan this morning. They gave me a CD to take to the ENT on Tuesday, but I can't even find my thyroid on it! Tami, thanks for the info on the doctor in Charleston. Since I'm in SC, I'll definitely check this out if I have to have surgery.
You'd think one of my docs would have told me not to take my multi-vitamin with IODINE! I'm so confused and overwhelmed! This board is wonderful!

misswells 10-06-2008 10:48 AM

Re: hyperthyroidism treatment options
 
Hello Lynn, I had have Graves was dx in March of 2007, 5x max on all labs, tried Tapzole, tolerated for awhile, my endo was by the TSH numbers, so when I got into remission and I was screaming at him that I didn't "FEEL" any better and he suggested a psychiatrist, I quit taking anything at all. Within 4 months, my Graves incl, the GO was back 100%. I had a thyroidectomy last Thursday and am sitting here trying to figure out what to do now. The surgery was not that bad, lasted 2.5 hours, I had a great surgeon at stanford, was in the hospital for 48 hours and am currently not taking any pain medication. I was VERY hyper when I went into surgery, so I was expecting more complications, who knows, maybe thery are coming, but I would not worry so much about the surgery it is a good solution. Now the hard part. gettting stabilzed on the meds.

mkgb 10-06-2008 11:15 AM

Re: hyperthyroidism treatment options
 
One of my Aunt's is pure Graves. The rest have Hashi's or a Hashi's combo. ;)

My Aunt N has been on a PTU for near 15 years. She treats side effects with L-Carnitine and beta-blockers. She eats low salt, low iodine food and has had 4 kids and lives well. My Hashi's Graves Aunt B1, had a Endo push the RAI solution. She had to do 2 in three years. This still didn't kill off the thyroid completely. Then when a third RAI was prescribed.. well choice words were spoken and she had a TT. There was papillary cancer in her thyroid. She is now regulated on a mix of Armour and synthroid. My Aunt B1 and Aunt N swear by trying to manage it with meds first. If medication doesn't work, cut it out and make sure it can not be a future issue. I am of the same philosophy. If it has to die/go cut it out. Nothing but a pain in the neck. I am biased. I have Hashimoto's and Graves. My thyroid is dying quickly now.. but the Graves death throws make medication a roller coaster ride. i have a nodule now. Just one... just under the 1 cm dimensions. I would like it out. But my MDs want it to get bigger first. :D Gotta love em.

MG

lynnybug55 10-06-2008 11:31 AM

Re: hyperthyroidism treatment options
 
Thanks, guys. The more info I get, the less alone I feel. My husband thinks this "hyper thing" is great 'cause I'm finally losing some weight! At least, until he found out what this can lead to, he's very supportive now. After reading through these boards, I'm starting to wonder if hyperthyroidism is really the problem. I have some symptons, but also some of hypo. Can you switch back and forth??!!?? I've had anxiety attacks and heart palpitations for 20 years. They are worse, now, though.
Let me know how your appointment went, Tami.

mkgb 10-06-2008 11:43 AM

Re: hyperthyroidism treatment options
 
Lynn,

You DEFINITELY need testing for Hashimoto's and Graves antibodies. The hyperT/hypoT mixture is almost classic early stage Hashimoto's. You can also have BOTH Graves and Hashimoto's. I do. My mom and two of here sisters did. It does happen. It sucks, but it is possible. Make sure you are managed properly.

MG

lynnybug55 10-08-2008 06:37 AM

Re: hyperthyroidism treatment options
 
MG, help! After waiting 30 minutes past my appointment time yesterday, I finally saw the ENT. We looked at the CT scan CD and my thyroid (both sides) is growing around my esophogus. That explains why I have difficulty swallowing, etc. He didn't mention any nodules & I didn't see any. He did see a small cyst and assured me it was nothing. He said I have Hashimoto's instead of Graves because my eyes aren't bulging!!??!! He put me on PTU 50 mg and wants to see me in 3 months. I don't know what to think and have so many questions. As I said before, I've had hypo and hyper symptoms for years, just didn't know what they were. I guess nobody thought to check this since my TSH was evidently "normal". I think my thyroid is slowly dying. And, will probably switch between hyper & hypo til it's dead. How do you manage this? Should I ask my primary doc about the antibody tests? What if I start taking PTU and go hypo again? We don't have an Endo here, but several cities nearby have many. I think I want to try to see one of them, but should I try to talk to the ENT again? also want to have a hair analysis done. I want to know WHY my immune system attacks my thyroid!!! I asked the ENT if I needed to watch what I eat or if there are any vitamins or supplements I should take, and he said "No". AAARRRGGGHHH!


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