[mamabear]

#1066416

Great question! There are so many answers though!
If you ask me, refusing to take the RAI way back in 01′ worked for me. I tried the PTU (Propilthioricil) which is an ATD (same as Tapazole) and it worked for me. I was very very lucky! Most people are on for a long time before they see results. I wasn’t, i went on it and it worked and there was a time or two that I had to go back on it but for a very very short period and was able to achieve remission and stay that way without the medicine. Not many people can say that.

There are some on this board that did RAI and are on thyroid suppliment and are doing well with good strong levels and not a problem. Some are still struggling to get into the right range.

My mother was diagnosed with HypO a few years ago, her general dr. thought she could handle it and moms levels still aren’t better so finally dr. sent her to an Endo and the dr. said all new bloodwork and we’ll change doses and see. Now they also have to work with mom knowing she has Crohn’s disease as well. So it is tricky but her Crohn’s is currently in remission. That also reared it’s head a few years ago.

If you talk to 100 people about HyperT and HypoT you will get 100 different experiences. It truly is something between what your gut says, what you have already tried and if it worked or failed and what your dr. thinks.

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[snapshot]

#1018678

I was just wondering the difference in hyper and hypo..it seems to me if you have a hyperactive thyroid and you have your thyroid removed or the RAI your just going from problem to problem…so what is the benefit of going through all of that just to be the exact opposite and to be hypothyroid…it can’t be better for your heart to be 55 bpm that 130 can it ??? I’m just confused..you still have to take medicine the rest of life…just seems like it doesn’t solve anything to go from hyper to hypo???

My sister had the RAI and she seems worse for the wear to me?

[Bobbi]

#1066417

With either condition you need to take medication of some sort to get you back to normal levels of thyroid hormone. I believe that the medication for lifting us out of hypo back to normal is safer than the antithyroid meds that lower our thyroid production from hyper to normal. Everyone can do their own research on this issue. But that is my "take".

[snelsen]

#1066418

I would like to comment about heart rates. No, it is not really the same to have a fast heart rate or a slow heart rate.
A fast heart rate, called tachycardia, of 130, is too fast! It is like driving your car at 60mph in first gear. It is not efficient, the heart is racing, and that is not good. A slow rate, or bradycardia, is very efficient, and better for the heart. Having said that, there is a range of normal heart rate, usually below 90, above 60. Athletes, or people who exercise, usually have a slower heart rate. Of course, it is possible to have such a slow heart rate that you are not having enough O2 circulating, and a person may feel dizzy or faint. Generally, this is related to drugs for hypertention or other cardiac meds that need to be adjusted.
I am sure you will hear from others on this subject. Hyperthyroidism has a very fast heart rate, sometimes dangerously so.
130 is to fast, 160 and above is cause for concern, requiring a cardiologist or an endocrinologist who is familiar with thyroid disease.
I had a thyroidectomy, because meds simply did not control my hyperthyoidism. Then you can be kept in a normal and healthy euthyroid state with thyroid replacement. Today I certainly would consider RAI, which was not offered at the time, for I was 24, and it was a long time ago before RAI.
I think have a conversation with your docs about your questions would be helpful, of course. But the wonderful thing about this site is that you can hear the experiences of others who have been there.

[snapshot]

#1066419

Thanks for the replies everyone…i guess it just boils down to it’s better for your body to underwork than overwork … i just wasn’t sure if it was worth it and debated just leaving it as is and not have my thyroid removed or the RAI… i was struggling with that decision…in my mind it was worth it to stay this way because it seemed like the alternative of hypo wasn’t really solving anything but i guess its the lesser of the two evils?

thanks again!

[Bobbi]

#1066420

One thing to keep in mind, snapshot, is that we are never left hyper OR hypo. We are given medications to put us back into the normal zone. When we have had the thyroid removed, and are on the proper dose of replacement hormone, we are NORMAL. When we still have our thyroids, and are on the correct dose of ATDs, we are NORMAL. The technical term is "euthroid." Normally healthy people are "euthroid." We are only hypO or hypER if we are not being treated. And that isn’t an option.

[snapshot]

#1066421

Thank you bobbi, I’ve never heard the term euthroid…. since i’ve been treated for hyper i haven’t ever felt back to normal so maybe thats why i was wondering ..i never new we could be LOL but thank you that helps me a lot.

[runlacie]

#1066422

I had RAI in July 2009 and I’m still trying to get my meds regulated as my thyroid continues to slowly die, but being THIS way is OH SO MUCH BETTER than being hyper.

[Bonnie1954]

#1066423

Hi,
My name is Bonnie, and I am in the same boat…dont know what to do!! I was diagnosed with Graves a couple weeks ago. The Dr. said my TSH levels were sky high and he put me on propylthiouracil 50 mg twice a day, and metoprolol 50 mg twice a day. I still feel like I am not in control of my body and my mind is not far behind. It is getting to where people are noticing at work. I am a nervous wreck, can’t sleep, can’t eat or think straight, my knee and my back are killing me, and I am having a hard time even getting my laundry done all of a sudden….just cant stay with the program…and the DR. wants to kill my thyroid. Then I will be hypo. I dont understand why I should trade one disease for the next. Plus, I have a really weird question…does anyone on here ever crave sugar or candy? I never cared much about it before, but I have become addicted to these hard candies…I know that my mouth is dry, my eyes are dry as well. Also, my husband said I sleep with my eyes open. Weird…can anybody answer these questions before I go totally into space?? Plus, I am scared to death to drink iodine or anything to kill my thyroid. HELP!

Thanks,
Bonnie

[Ski]

#1066424

Hi Bonnie,

The bottom line with Graves’ is that you need to choose some form of treatment, and you need to achieve normal, STABLE, thyroid hormone levels before your body will even begin to heal from the hyperthyroidism. It can be hard to know exactly how long you’ve been hyperthyroid, but in the end we didn’t catch it overnight, and we won’t recover overnight.

All three treatment choices have pros and cons, but all three can bring you back to health. What you need to do is research each treatment option and in this way you will ultimately come to a point of decision, where one seems remarkably better to you than another. It seems to me that when patients have had an active role in their choice, they are much more likely to feel well at the end of the process. It could just be that they know what to expect.

ATDs (anti-thyroid drugs) can bring your levels down quickly so that you can think clearly. It is really hard to come to terms with all of this AND learn about it when you’re feeling ill, so our recommendation is usually to use ATDs to bring your levels to a more normal point and allow your body to begin to heal, and your mind to begin to function correctly again. It’s all pretty overwhelming, we know.

Some people have dramatic reactions to ATDs, and there are a couple of rare, very dangerous side effects that can occur, so keep your eye on that stuff (rare, but you should understand them), so if any of that happens to you, you may be forced to make another decision before you feel truly well. That’s why you should learn about it even if you feel you don’t want to use it.

Bottom line, hyperthyroidism cannot be left unchecked, and there are only three proven ways to reduce thyroid hormone levels. ATDs, RAI, or surgery to remove the thyroid. That’s it. Remember please that when you use RAI or thyroidectomy, your thyroid hormone is replaced with synthetic hormone, so it doesn’t leave you hypo forever. You just need to always take, and monitor (at least annually, once you’ve stabilized), your synthetic thyroid hormone. Either way (ATDs to reduce hormone levels, or replacement to elevate hormone levels), you’re MANAGING an imbalance in your body with substances that bring you back into balance.

Not sure what to say about sweets ~ there certainly may be a nutritional imbalance during hyperthyroidism, LOTS of things go out of whack. Keep your attention on these things and ask your doctor about them. We’re all very individual as to the "weird" symptoms we can experience ~ in addition to that, Graves’ may not be the ONLY thing we’re dealing with, so try not to point to it for every thing that goes nuts in your body right now. You could do yourself a disservice by not getting help if it’s not caused by the thyroid issue.

I hope that helps!

[Ski]

#1066425

I forgot to address your eyes being open as you sleep ~ you need to go see an ophthalmologist ASAP about this, but in the meantime please look up some posts about how to fashion a mask to protect your eyes at night. The fact that your eyelids are not closing as you sleep may be due to TED (Thyroid Eye Disease), which is a separate condition that can come along with Graves’ thyroid disease, in which the antibodies (not sure if they’re exactly the same or slightly different than the thyroid antibodies) attack the tissues behind the eyes and cause them to swell, which pushes the eye forward. It has a defined disease cycle ~ comes on, gets worse and causes frequent changes in your eye bulging and/or alignments, which can lead to double vision, then it stays the same for a while, then it gets a little better, then it stops completely. A lot of people have their eyes return near their normal point, but some people have issues remaining at that point that can be corrected with surgery. If your eyes aren’t closing at night, there are several issues that come up, because you can hurt your eyes if they’re not protected, and you can scar the corneas. TED won’t typically risk your sight (unless the pressure gets so bad that it compresses the optic nerve), but damage to your cornea CAN take your sight, so you must protect your eyes. Artificial tears, used liberally through the day, can do some good stuff, but at night you should be using a thicker gel substance, AND covering your eyes with something that’s safe, to protect the corneas from your sheets and blankets and pillows.

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