[AzGravesGuy]

in reply to: Diagnosed this week, finding only negative info #1178411

Hi and welcome to the Graves’ club!

I had some great alleviation of symptoms with antithyroid drugs (methimazole) and the use of a beta blocker (atenolol) when I was first diagnosed and even achieved a few years of remission.

I later decided to do RAI and I am still waiting to see some solid results, but it has worked for many others. Some people are able to manage their GD on antithyroid drugs alone, and others choose surgery. Surgery is the fastest, by far, but it carries its own risks.

The problem with GD is learning patience. Whatever treatment route you decide to take, patience is key.

Research all 3 treatment avenues and choose whatever you are comfortable with. Do not be discouraged. With patience and a treatment plan you believe in, achieving your dream this fall is completely possible.

Good luck and please keep us updated!

[AzGravesGuy]

in reply to: My April 9th 2013 Results 1 year later #1178349

Congratulations on a successful treatment thus far! It is always encouraging to read about people that are doing well with their chosen course of treatment.

Anxiety is a beast that disguises itself in many forms. Kudos to you for recognizing it and being aware!

I hope you continue to improve and please keep us updated!

Rob

[AzGravesGuy]

in reply to: Well, here goes! #1173602

Thanks Carrie, I appreciate your support!

I spoke to my dr today. My skepticism of actually being hypO was met with cautious agreement. He even said there is a slim chance I might actually be euthyroid without the methimazole, since my free levels are so close to normal range.

I am off the methimazole and atenolol for another 2 weeks, then more bloodwork to see if history repeats itself and I rebound hyper.

I feel good though, mostly because the weight has been lifted from the back of my mind that this cycle was never going to end…..and it may not just yet, but a massive gain has been made and that gives me a sense of calm. Hopefully I will continue to move forward this time instead of having a relapse.

As I see it, the Graves’ experience with RAI is a 3 act performance.
Act 1, hyper.
Act 2, hypo.
Act 3, regulated.

Whether real or ATD induced, Act 2 is a welcome change, especially with summer coming. All of the hypo symptoms are tolerable so far. Annoying, but tolerable. Lol!

[AzGravesGuy]

in reply to: Well, here goes! #1173600

2 weeks have passed on the lower dosage of 5mg methimazole 2x a day and the results are in:

My tsh is now 36.43H (.45-4.5) 2 weeks ago it was .6!

FT4 is now .4L (.8-1.7) 2 weeks ago it was .5L

FT3 is now 1.9L (2.0-4. 2 weeks ago it was 2.0

I just got the results in an email, of course right after my MD’s hours ended, so I have to sit and stew until tomorrow. I will not be taking methimazole tonight or tomorrow morning.

This now explains everything I have felt in the last week, aside from the strep I contracted. Lol! The malaise, the brain fog, the obscene tinnitus, the graphic nightmares, the chills that “aren’t” strep related…..I guess….

Could it really be? Could my RAI just have been a late bloomer? Now I am struggling to palpate my thyroid. There is remarkably less tissue there.

Could I really be close to entering the second act of the Graves’ Experience?

I am glad I use a “cash lab” to get my levels checked so frequently. If I had to wait 90 days for insurance to allow this, who knows how overly hypo I could have been. I encourage everyone that feels symptomatic and has insurance restricting their bloodwork timing to investigate cash labs. They are a welcome resource for those of us without insurance (like me) and anyone who is impatient but can feel there is something definately different.

I will update with what happens next tomorrow! Whooohooo!

[AzGravesGuy]

in reply to: how to not obsess about GD and TED – any advice? #1178248

It may not be your style but I have found guided meditation for 15-20 minutes every morning to be what helps me focus and eliminate the obsessive thoughts and worries about GD.

It helped me through my RAI anxiety and now helps with the daily stresses of life by allowing my mind to shut out everything else for just those few moments.

I have several as mp3’s loaded into my phone and tablet so I never have to go far to feel at peace when it is needed, as long as I have ear buds on me. (Before I leave for work, occasionally on lunch break, sometimes to relax and decompress before I leave work if it has been an awful day, sometimes to shut off the anxiety at night) I get them for free at Meditation Oasis (they are under “podcast”). There are 40+ to choose from and hopefully one would suit your needs.

Feel free to give meditation a try. It works for me. It might bring you some peace as well.

[AzGravesGuy]

in reply to: Confused…can levels really drop that fast? #1178213

I get my labs done every 2 weeks or so. In my experience, yes, my levels can rise and/or fall that fast. I recently had my levels almost double in 11 days on a lowered methimazole dose.

There is a certain amount of yoyo-ing that occurs while trying to get the correct ATD dose figured out. Once you hit “the sweet spot” you will know.

Good luck in your treatment!

[AzGravesGuy]

in reply to: Kudos to Kimberly #1178187

I agree. Being a moderator is a tough job. Sometimes you ‘have’ to be the bad guy.

I belong to other health boards, gardening boards, pet boards, and a psychology board. My experience there has been that if a mod disagrees or if you go against guidelines, 1 warning then you are booted immediately.

The moderators on each of them have never exhibited the patience, class, or objectivity Kimberly has presented here as a Facilitator and I applaud her work.

[AzGravesGuy]

in reply to: Just curious about RAI #1177969

If disagreeing with statements made labels me as aggressive, abusive, or a bully, then the environment for an objective discussion never really existed.

With that said, I end my participation in this thread.

[AzGravesGuy]

in reply to: TED again? Double vision again? Not sure I can do this again #1178168

Hi Shirley,

Reading of your recent troubles breaks my heart. You have been a tremendous source of information and a respected, constant reassuring presence to many of us here on the board.

I know you have the strength to get through this difficult time and hope it resolves sooner than later. I am sorry this battle has continued for you and hope this new problem turns out to be something relatively simple and unrelated.

You are in my thoughts and I wish you a speedy recovery.

Rob

[AzGravesGuy]

in reply to: What Triggers GD?? #1178088

I was a Vegan for almost a decade before diagnosis. I have been a RAW Vegan (80% raw fruits and vegetables, with cooked protein in the form of beans and peas) since last September. I also drink protein shakes consisting of chia, hemp, pea, and rice protein.

I am 100% Organic and Gluten free. I use homemade “green” cleansers in my home and office. I try very hard to live chemical free as I have battled asthma and severe allergies most of my life.

I unfortunately have seen no change in my GD that I can relate to this lifestyle change. It is a big disappointment to me, as I have invested countless hours in researching and planning this change. I was never given any promises, but the expectation was always there.

My research started with the Dr. Weil Anti-Inflammatory Diet, and then Dr. Neal Barnard’s diet for reversing diabetes. I combined the main points of both of them and that is how I live and eat. (Diabetes runs in my family so I figured I would launch a preemptive strike before it set in.)

Aside from losing lots of weight, which I cannot completely attribute to the change in lifestyle, the RAI took a lot of weight off during the thyroid dump phase, I unfortunately have yet to see a symptomatic change worthy of note.

I visited a RD before beginning this and have had 2 vitamin level labs drawn since, I am in no way malnourished. Lol!

I do believe that any step toward healthy eating is a step in the right direction, whether the results are immediate or gradual. Only time will tell if this makes a positive impact in my situation.

I will add that including daily guided meditation has helped immensely with attaining focus and relieving stress, which makes me feel better every day.

[AzGravesGuy]

in reply to: Uncaring husband(have to share) #1178101

Hi Amy!

Absolutely NO offense taken! Everyone is different and there are unfeeling louts everywhere. Lol!

Your therapist sounds like a smart person. That is a difficult talent to develop, but a sound method of dealing. Reactionary training robs the agressor of his or her power and empowers you instead. It is an awesome technique once mastered. I am glad you found success with it!

[AzGravesGuy]

in reply to: Uncaring husband(have to share) #1178093

Karen,

I am so sorry to hear of your day yesterday. Graves’ takes a toll on the sufferers and their immediate circle of friends, family, and loved ones.

I have lost a few from all of these groups throughout this experience. Some I miss, others I do not.

You asked if this is the way one would treat a patient with your conditions. Short answer is of course, no. I do not know what his motivation was, but it certainly sounds like there are some issues that need to be discussed between both of you. Hopefully that can lead to an understanding and some acceptance of your symptoms.

Never apologize for venting your GD frustrations here. That is what a support group is for. Crying releases stress so have at it!

I have a client that recently went through a divorce and she is having some severe issues with it that I will not discuss here. My advice to her is my advice to you: You are in control of your feelings. People may try to change that but it all comes down to how YOU want to respond, how much you allow yourself to be affected. It may sound overwhelming, but you control your destiny.

I hope you have a better day today.

[AzGravesGuy]

in reply to: Just curious about RAI #1177957

Naisly wrote:

I know radiation is cumulative, it stays with you forever.

This is misinformation. Only certain types of radiation are cumulative.

Are you speaking of ionizing or non-ionizing? Alpha, Beta, Black Body, Delta, ELF, Electromagnetic, Gamma, Infrared, Microwave, Neutron, Thermal, Ultraviolet, VLF, X? (Many of these we are constantly exposed to on a daily basis without even knowing it. Welcome to life on planet Earth.)

If RAI was not cumulative, ergo accumulated in the thyroid gland to destroy the tissue, it would not work. It has a widely accepted half life of 8.5 days however. 2 months after my treatment I was analyzed with a geiger counter and no radiation was found, aside from normal background radiation. So it does not stay with you forever. In my case, it did not stick around long enough.

To make such a blanket statement is irresponsible and plays on people’s fears of the unknown. This does not make a supportive environment for patients wanting real information.

Perhaps you should look further into your “skin crawling” research and make definitive statements instead of all encompassing half truths. If you have not researched that far, please refrain from making these bold assertions.

I could ramble off a list of purported cancer causing items from Asbestos to malathion to Red #40 to stress. Information is great. Feeding speculation and fear is not. With all due respect, please be more responsible with your words in the future.

[AzGravesGuy]

in reply to: Everyone Please Read – Private Messaging Abuse #1178006

I received an irrational, misinformed PM from a member shortly after I joined this forum. I am glad there is now a reporting system in place.

As for bullying on the threads themselves, I have never encountered someone with such a blatant chip on their shoulder as you Ms Lux. In my opinion, your overall dischord in this forum has been a disappointing addition to this community.

If anyone has been paternalistic, antagonistic, or immature, it is you.

Are you going to sue me for that comment? Good luck finding a lawyer to take your case, let alone a judge to hear something so frivolous as the litigious assertions you have made thus far in this anonymous forum.

I belong to a few other forums which I will not name and there seems to be a pattern of people with similar names as yours spreading their misery. I cannot imagine it is more than coincidence, but it certainly raises a red flag. Anyone that can Google can see it.

GDATF as I know it is about POSITIVE empowerment of the patient through reputable information and a supportive atmosphere. Your aggressive tone and irrationality have cast a shadow on this healing environment.

As it has been suggested to you previously, if this forum does not meet your needs, and obviously it does not, then please move along. To continue to post negative comments about the clear guidelines and to attack moderators here, with so many other forum options available on the web makes me question your motive as an individual.

Originally you were offended because it was suggested that you consider seeking a second opinion for an issue that may or may not be in the scope of endocrinology. Now it has snowballed into a personal attack on a moderator and the forum guidelines. To see this unfold is not only a confusing progression, but lends less and less credibility to anything you post.

Whatever the problem is, I wish you the best of luck and hope you find a forum that suits your needs.

[AzGravesGuy]

in reply to: Just curious about RAI #1177948

I did discuss my cancer concerns briefly in the thread I have as a chronicle of my fight with Graves’.

For my situation, I was unable to find a significant, solid correlation to the RAI (16.5 mci) I received and cancer. I am concerned about that risk, of course, but if tomorrow I was diagnosed with say….a stage 4 adenocarcinoma, I would blame the 18 years I spent sucking down Marlboros and Camels before I suspected the RAI.

This Graves’ experience has led me to take responsibility for my past actions and say to myself “the self destructing behavior stops today”.

Until I can see proof that there is a valid study showing a marked increase in occurrence, while taking all the other bad things we submit our bodies to into account (preservatives in food, food dyes, cleaning products, smoking, drinking, exposure to car exhaust, or genetic predisposition, etc) I would just be fear mongering myself into unnecessary worry.

To the best of my knowledge a study like that does not exist.

So I did discuss the cancer concern as it applied to my grandmother’s treatment with radioactive seeds for her GD, but that is an outdated procedure that was mismanaged from the start so it cannot be used as evidence.

I feel confident and self assured that I have done no more lasting radiation damage to myself than I would have received in 2 transcontinental flights. (Especially since the RAI did not work on me.)

There may be conflicting opinions about my stance and that is great too. If we cannot discuss, we cannot learn.

[Author]

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