[Ski]

#1067556

WOW. You have certainly been through it all!

This is a tough question for us to answer, especially since your tests are inconclusive for Graves’ Disease. It’s really impossible for us to know what the right thing is to do, even for a Graves’ Disease patient, so for someone with a "questionable" diagnosis, it’s even harder.

Of course, that’s not very helpful at this point, and I am sorry about that.

The fact that you are measuring hyperthyroid is something that needs attention, and the only options I know of to correct hyperthyroidism are (1) wait and see, just in case it’s a transient event ~ which you’ve done (six weeks’ time would have resolved it, if that were the cause), (2) ATDs ~ which you’ve tried, (3) surgery to remove the thyroid, or (4) RAI.

The fact that your levels are going up and down is really hard on your body, so after going through all the junk you’ve been through for the past two years, this may be the answer to get you back to health.

It’s impossible for us to say what IS going on with you, exactly, especially since your doctors haven’t really figured that out completely. The possibility exists that your body is reacting to something else that’s wrong, that they still haven’t found, but prolonged periods of hyperthyroidism can be fatal, so you need to do something to resolve that situation, at least.

RAI has been used for 60 years, safely, so try not to get too caught up in that worry. If you want some other way to resolve this, then thyroid surgery would be the last possible option. For me, I was not thrilled about having someone cut me open, so I chose RAI when I was looking for a solution. It helped me get back to health.

Does that help at all?

[hyperm]

#1067557

Deep breaths its normal to be so anxious. Only you can make that decision. However, I had the op in July and now in hindsight I wish I had done it 4 years ago instead of going through everything I have to finally make that decision.

I am sure you will be absolutely fine and feel the benefits soon enough! There are lots of people on here who have had RAI and will give you a better answer. Best of luck tomorrow xxxxxxx

[Dream2BFree]

#1067558

Thanks for the replies…I appreciate it more than you know.

Ski…you are correct in stating that there may be something else going on…

I am scheduled for another MRI to rule out any demyelating diseases…the muscle weakness has been profound. Also my doc wants to rule out a pituitary mass causing all the hormonal changes to my body. I am sure it will all turn out well but I would like to know for sure there are no other causes for my thyroid issues before destroying my thyroid.

I guess you are correct Ski…my body is worn out and I can’t take feeling this way much longer. I need to take action…meds will not work for me so on to the next option.

Again thanks for replying.

I have been doing a good bit of reading on RAI…will 2 days be enough to avoid close contact with people :” title=”Question” />

[Dream2BFree]

#1018863

Hello everyone…

I have previously only made one or two posts…there has been a lot going on ” title=”Neutral” />

I found out I have hyperthyroidism about a month ago. My TSH was 0.02 and free T3 and free T4 were about 4 times the normal levels. Also, my liver levels were very elevated with ALT 279 and AST 169.

I have had such a battle the past 2 years prior to diagnosis with referrals to Cardiologist, ENT, Nuerologist. I was tested for everything from vocal cord dyscfunction, possible heart attack, brain tumors, etc. I guess the muscle weakness and heart "beating out of my chest" have been the hardest sypmtoms to manage.

My iodine uptake and thyroid scan were inconclusive as to the cause of my hyperthyroidism. All the doctor could say is I have either Grave’s Disease or nodules. (that helps ” title=”Confused” /> ) I have also learned that my thyroid cycles up and down…I started taking Methimazole about 4 weeks ago. I was forced to stop taking this medication because I broke out in a horrible rash and my legs and feet started swelling. The doctor has suggested I have a RAI.

I am scared to death to make a decision that will be so permanent….HELP! My RAI is scheduled tomorrow

[Nick]

#1067559

Dream2BFree,

Good luck with the RAI. I am on the second week myself after the procedure.

[Dream2BFree]

#1067560

Well, just got home from RAI.

It is very interesting that my Endo told me over phone last week that my thyroid scan was inconclusive….
The nuclear med doctor looked at my report (thyroid scan was done at his hospital) and told me that my scan and uptake were conclusive to Grave’s Disease and there were not ANY nodules!!!! My uptake was app. 70% and the uptake pattern was hallmark to that of Grave’s Disease.

Ok. WHY did my Endo tell me that the results were inconclusive. Also, he told me it was the start of Grave’s if at all…70% uptake is not the start! Did my Endo give me the wrong results…possibly another patient’s results? Which is very disturbing

Although, I did have antibody test and the result was negative. The doctor also mentioned before I started taking Methimazole it might elevate liver levels which was a concern since mine were already so elevated. Maybe, the remaining test results for liver and other levels will be more conclusive? My MRI with special attention to pituitary gland is Nov. 5.

It deeply disturbs me that the nuclear doc was more help than my Endo doc….

[Ski]

#1067561

Sadly, there is much that endos do not cover with their patients, and for those who do not routinely deal with Graves’ patients, some do not even know as much as WE do about what we are dealing with. One of the facts I think we’ve all learned through having Graves’ is that no one cares as much about our health as we do, so we need to make sure we are informed, and we cannot count on our doctors (ANY of our doctors) to take the time WE will take in order to be informed. Of course, there is a caveat that we need to make sure we are looking at *reliable* information, so if you’re looking on websites, look for sites that have earned medical certifications of accuracy, it’s VERY important. Snake-oil salesmen still exist, and they can make some very pretty and seemingly convincing websites.

The antibody test can come up with a false negative, and in addition to that, the antibody levels rise and fall for reasons no one can conclusively explain, so the fact that your test was negative doesn’t necessarily indicate that you do not have Graves’. What I have heard is that the uptake & scan are more conclusive than any blood tests, when they are "textbook" results.

If you get confirmation from your endo (or internal med doctor) that the nuclear med doctor was absolutely correct, then at least you will have the peace of mind that you were treated in the best possible way for your condition. I completely understand your hesitation about destroying a vital gland, and no one would want to do it unless it were the last resort and the only way to health.

The good news is that you are on your way to health!!! No matter what the cause, this should resolve your hyperthyroidism, which can be SO damaging, especially left unchecked. Keep in mind that your body has been through an enormous onslaught (I’m sure that’s no surprise, you’re feeling it!), and it’s going to take a long time to heal completely. In the meantime, please try to focus on small improvements, things that are better today than they were yesterday. Someday in the future (I hate to say it, but it will not be anytime soon) you will find yourself having lived out the better part of a day without even THINKING about feeling badly, and that day will be the one you’ve been waiting for all this time. At this point, you’re closer to that day every minute, so try and see it that way, instead of "one more day where I don’t feel right." Just pointing your mind in the direction of the positive can make a difference in how your day proceeds and how your attitude heals too.

Also, make sure you are watchful for signs of hypothyroidism ~ it may take a while, since the excess thyroid hormone in your system can take up to six weeks just to flush out of your system before you feel a difference, but when you start to go hypo, you need to get on replacement hormone to make sure you are not hypo for long. The replacement hormone takes a while to build up in the bloodstream for consistent use, so it’s best to get started sooner than later. I liked having an open order at the lab, so I could drop in and have blood drawn anytime I felt I may have slipped into hypo, and eventually I really was hypo, then my doctor phoned in a prescription for replacement based on the results. I had a few tests done before I was truly hypo, but the peace of mind it afforded me was worth it, to me.

Visit often, search for topics of interest to you, ask any questions you have! We have SO been there. ” title=”Very Happy” />

[Dream2BFree]

#1067562

Thanks again Ski.

I have been trying to make a more conscience decision to read positive things, watch positive things on TV and absolutely not let this disease or any other define who I am. ” title=”Wink” />

Trying to make a decision whether or not to destroy my thyroid has taken more of my energy and focus than I would like. It is a "done deal" now so I am looking forward to moving on to better days….may take a while but I know it will come.
” title=”Very Happy” />

Have a great weekend! I hope you will not mind if I have questions later on if I turn hypo.

[ewmb]

#1067563

Dream,
I finally had my RAI on May 8th and am now as SKI says on my way to being a lot healthier. It has taken its ups and downs and I have had to guide my endo along even though he has dealt with Graves patients in the past. Keep thinking that time is passing now going toward a better you instead of the unknown! Hope you have a good weekend too.

ewmb

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