[Ski]

#1074621

Hi Lynne,

First things first: hyperthyroidism is much more dangerous than ANY of the treatments. You simply must get your thyroid hormone levels under control.

It’s possible that being hyperthyroid is making it difficult for you to concentrate. You might want to start with ATDs, just to give your body some rest and begin your return to normal thyroid hormone levels, and then it will be easier to evaluate the treatments for yourself.

In truth, there are MANY people who take ATDs, go into remission, and never think another thing of it. There are MANY people who have RAI, find a good level of replacement hormone, and never think another thing of it. There are just as many who are thrilled with their surgical results.

We don’t see those people here. Remember that only people who are having trouble will seek help.

The only thing that counts, in the end, is what YOU are comfortable with. It is no fun to be driven into a certain course of treatment without any choice. We are lucky in that we HAVE choices.

You’ll get there. Do your research, and decide upon something, even if it’s just starting with ATDs because that’s the only option you can reverse ~ getting back to normal will be miraculous, I promise.

[gemsile]

#1074622

Lynne,

Sorry you’re having such a tough time. I really lucked out in that the Tapazole (medication) worked for me really well and fast. I still have to take it (4 years later) everyday, but it keeps things in check. Before we decided on meds though, here’s the plan of attack my doctor suggested:

Meds first, try them out, see what effect they can have. Make sure you’re in constant communication with your doctor if there are any negative side effects, and be sure you discuss what the expected side effects can be. I understand your fear with previous experiences, but maybe there is a certain med the doctor can suggest that is least likely to have those problems.

Next, radiation. I didn’t have to go this far, but I’ve heard, like you, that it does work. If you go hypo, you may have to go back to the meds stage to treat that, but it IS treatable. (Final option is surgery, which most people like to avoid. I pray for you that it doesn’t come to that.)

I don’t know if this helps, but if nothing else, know that you’re not alone in the decision you’re facing. Its hard, but the best thing is that you ARE getting treated, and you WILL get better! Till then (and after of course), we’re here for you.

[Bobbi]

#1074623

People who come to sites like ours, Lynne, are ill — typically they are NEWLY ill. In addition, there are also the folks who have, for one reason or another, had difficulties: additional autoimmune issues like the eye disease are common. So, the site is skewed on the side of illness, not health. The moderators here are, by and large healthy: it’s almost a requirement. There needs to be some balance. But we are, most definitely, outnumbered. ” title=”Wink” />

While it is smart to look at possible adverse side effects, you cannot allow yourself to be immobilized by them. Hyperthyroidism is significantly worse for you than any of the treatment options might be. It is the evil you know, at this point in time, and you might even be slightly comfortable with it. But evil it is, and over time, it will run you down.

So, what I know about the adverse side effects, is that approximately five percent of folks who try the ATDs have serious problems with them. There is a slightly higher number who have more moderate side effects. But the large majority of people who take the ATDs find they work to control their thyroid hormone levels. Sometimes the drugs do not work optimally to control thyroid hormone levels, and another option needs to be considered.

RAI and surgery work to eliminate hyperthyroidism in 90% of the cases. It is rare, in other words, to need two surgeries or two RAIs. That is particularly true, in the case of RAI, if your doctor goes for an ablative dose (meaning that you intend to kill off a majority of the thyroid.)

Synthetic thyroid replacement hormone is chemically identical to our body’s own T4, and it works exactlyi the same as our body’s own T4. Finding the right dose is important, because it IS thyroid hormone, so too much of it will make us hyperthyroid again, and too little hypothyroid. But at the right dose it works well. Yes, some people report problems getting regulated. I am one of them. It took two or three years to find a stable dose, because my thyroid levels kept changing (for some, unknown reason). But I can truthfully say that during that time I never, ever, felt as bad as I had while hyperthyroid, or on the ATD I had been given. Other people have different expectations, or different senses about that, but that is my (anecdotal) experience to share with you.

You truly need to make some type of treatment decision. Beta blockers help to protect your heart, but they only mask the other bad symptoms of being hyperthyroid. You are losing bone and muscle while you try to decide. Many of us go on an ATD, at least temporarily, while we are trying to make the decision. It usually does not present a problem, and allows us time to decide, without further damage to our bodies.

I do wish you luck. Make a list of the pros and cons if you will and look at things objectively as well as emotionally. It can help, although I know it is a hard decision.

Take care,

[LynneB54]

#1019861

Hi Everyone,

I’m still so confused about treatment options. I’m only on a beta blocker at this point, and have to make a treatment decision soon; I can’t go on this way much longer. But it just seems from reading the various posts that virtually everyone has problems – no matter what option they choose! Does ANYONE have an easy time? Is it possible to have RAI once, go hypo, and then do well on medication? And ATDs come with their own set of serious side effects. I’ve had serious reactions to medication before (including seizures) and I’d really, really hate to experience the problems that some people here have gone through with them.

Here’s how I understand it. RAI works, even if you have to have multiple doses. But some people have problems getting out of the hypo state and feeling well. (RAI doesn’t scare me, but the problems associated with being hypo do.)

ATDs work to get you back to a normal thyroid level, but they have serious side effects. And then there are the ‘minor’ side effects that many people have posted about. Those sound horrible as well!

How does anyone ever decide what to do? I think I’m at the point of information overload and it’s virtually impossible for me to make a decision. This is not like me! Any suggestions for help in making a decision would be greatly appreciated. That said – I’m not asking for anyone to make a decision for me, cause I know no one can. But any guidance in how anyone made the decision to go one way or the other would be helpful. I see my doc on the 26th and I have to have a decision.

Thanks for any tips or suggestions.

Lynne

[LynneB54]

#1074624

Hi All,

I wanted to thank Ski, Bobbi, and Gemsile for your responses to my questions about treatments. What you said makes a great deal of sense. I think I’m just going to have to take a deep breath, make a decision, and take the plunge. I’m sure in a few months (wnen I’m finally feeling better) I’m going to shake my head and wonder why I had so much trouble making this decision.

I really do appreciate the support! Have a good weekend,
Lynne

[elf]

#1074625

Hi Lynne –

I am a happy RAI case ” title=”Smile” /> As others said, there is not need for people like me (with no problems) to be getting on boards. The only reason I’m visiting is that I’m contemplating an eye surgery, so I’m on a lookout for that info.

I had RAI 3 years ago, my levels were eurothyroid for 5 months afterwards (no pills of any kind). My tests showed hypo 5 months later, but I personally didn’t feel any effect of going hypo. Started Synthroid and am on the very same dose ever since.

RAI freed me from the very same problems that people come here to look for help. I feel healthy for the last two years (in the immediate year after RAI, I had inflammed eyes, but that was all).

[Kimberly]

#1074626

LynneB54 wrote: How does anyone ever decide what to do? I think I’m at the point of information overload and it’s virtually impossible for me to make a decision. This is not like me! Any suggestions for help in making a decision would be greatly appreciated.

Hi LynneB54 – I totally understand about the information overload! When I was going through this back in October of 2007, I dealt with it by making a good old fashioned "pro" and "con" list for each treatment option.

I decided to try ATDs first, and I am still pursuing that option. My biggest concern with ATDs was the possibility of serious side effects. However, I felt a little better after my endo told me that the most dangerous side effects (liver damage and loss of white blood cells) don’t occur overnight. There is usually a period where you can spot deteriorating trends on your labs, and make a decision accordingly. So it’s really important to get regular labs done and to call your doctor immediately if you have any of the warning signs (sore throat, severe fever, etc.)

Good luck!
Kimberly

[Author]

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