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Hello everyone!
First the bloodwork:
2/15/13, 22 weeks post RAI:
FT3 4.9H (2.0-4.
so close to normal, but not quite.
FT4 1.3 (.8-1.7) finally something in normal range!
TSH .02L (.45-4.5) this is the first time in over a year I actually have a discernable tsh!After this bloodwork I was advised to cut my daily 5mg of methimazole to 2.5mg. I was constantly cold, I had patches of “snake skin” developing all over, the hair on my shins fell out. By all accounts, I was headed into hypO territory. I felt fantastic however.
11 days later (2/26/13):
FT3 8.9H (2.0-4.
almost doubled in 11 days
FT4 1.9H (.8-1.7)
TSH <.01L (.45-4.5) I am now at 25 weeks post RAI and clearly…..it did not work for me. I am hyper and sleeping in a puddle again. All the old familiar symptoms of burning skin, irritability, constant sweating, and crazy heart rate have returned. In effect I am exactly where I was last year. Hooray! (Like my thyroid, my sarcasm has remained intact.) Will I re-dose the RAI? No. Once was enough. My next move will be a TT, however, I am waiting until 2014 to get insurance to cover it. The PCIP plan discussed earlier in this thread has quietly gone bankrupt and is not accepting new applications. If I can hold out for another year or so, the laws change and the pre-existing condition restrictions end with all health insurance companies. So, I have decided to bide my time and become even closer friends with methimazole. It seems crazy to me that adjusting such a low dose could create such havoc so quickly, but it did. Lesson learned….again. Don’t take any moment of feeling good for granted. I am now on a 10mg dose of methimazole twice a day for a week to get the demon back under control. So far so good except my eyes are going ballistic. Bloodshot like broken windows, throbbbbbbbbing with my pulse, pressure, and so dry. I am on an arsenal of eye drops from rewetting to Patanol to Azelastine. At this point nothing has stopped the irritation. I was also given Nasonex and Patanase to help cut the inflammation. So far a bag of frozen peas has done more than any of the meds. It sounds crazy, but I want the cold feeling and crappy skin back. Lol! I got comfortable and forgot how awful GD can make me feel. Now for the good stuff: To some effect the RAI did work, as I am controlled with a 5mg dose of methimazole versus the 30mg I was taking last year at this time. So in that way, yes, the RAI did have some effect. It did shrink my thyroid, but only back to a normal size. I am ok with this as not having the pronounced goiter anymore is very nice. I can wear shirts with collars that touch my neck again without feeling like I am being strangled. I have lost 53 pounds since the RAI. There have been a few swing weeks where I can gain and lose 8 pounds, but overall the scale is still dropping. RAI works for so many people I have to admit I am disappointed. The tech that did the ultrasound said the thyroid is MUCH smaller than it was last year, but not on its way out. Her exact words were ” the RAI b*tch slapped it hard but didn’t kill it”. (Got to love the professionalism of the youth in today’s medicine. Lol!) Regardless, RAI is a viable and effective option for many people and I will not discourage anyone from this treatment. It just didn’t work for me. (Like the Popcorn button on the microwave, there is an expected rate of failure.) I am one of the 14% and now, proud of it. Not as proud as I would be if it worked and I was on Synthroid, no. But proud that I made it through stronger and smarter than I was before and ready for whatever comes next on the journey. Do not give up on yourselves fellow GD sufferers! Everything we do, everything we experience, most importantly everything we document here will help someone in the future. I feel fortunate to have found this community. We are all strangers but we are united in our fight. Knowing that makes it worth the battle and gives me strength to NOT snap at coworkers, NOT submit to the 1 A.M. anxiety attacks and most importantly, NOT doubt that life will get better. It will. I won’t have it any other way and neither should you.
Sube, I am glad you found us too. Thank you for sharing your story. It’s nice to meet another 14%’er! I hope you continue to heal.NPatterson, you are spot on. Finding male GD patients is like searching for a needle in a haystack. I read that most men go undiagnosed or are misdiagnosed by the resulting cardiac conditions. I hope my story will serve as a resource for men with GD that feel the isolation of being the minority.
Karenz, I hope you are doing well and your levels have started to drop and the related anxiety has subsided. There is published research that confirms elevated t3 levels cause anxiety, so if you are still experiencing it do not feed into it. I use daily meditation to center myself and overcome any residual anxiety. I have been doing it since last August and it really helps.
I will have new labs in 2 weeks. Stay tuned!
Thank you everyone for your support.
VanIsleGal, how awful! MRSA is some nasty stuff. Our UPS lady at work got a cardboard cut from a package and had a hard time getting rid of it. Here’s to a speedy and full recovery!
Drum roll please……..
FT4 is now 1.6. (.8-1.7) 2 weeks ago it was .8
FT3 is now 6.3H (2.0-4.
2 weeks ago it was 3.2Tsh is still undetectable.
Just for S’s and G’s I had an antibody test run. Thyroglobulin is 34 (<41).
So by cutting my methimazole dose in half, 2 weeks later my levels have doubled. Not cool thyroid!
The GP who I am seeing again Monday recommended a brain scan to see what type of tumor activity might be present on my pituitary. To say this scares me is a huge understatement. In so many ways I want to know, but I don’t want to know. I am needlessly scaring myself with the thought. It is easy to do these days. I seem to be very t3 sensitive, as it climbs I become an anxious mess.
Back to 10mg methimazole a day for another 2 weeks. Then more bloodwork. I was told to split the dose and severely reprimanded about not taking it regularly. I agree….look what happened.
I keep some on my key chain now, as well as some Atenelol. Now there is no excuse. Just swallow the pill and shut up. Lol!Thank you again to everyone on this board. Knowing I am not alone is very comforting. Even if it is just through a forum, I feel relieved and secure in my path knowing everyone is here with me. Talking to people that haven’t experienced GD is pointless. They don’t get it.
Thank you for being a place where I can air my ups and downs without retribution.
Sorry I have been a ghost lately. January is trade shows and travel time, but I had a wake thrown into the mix this year. Nothing like staying busy!
4 months post RAI:
I feel great!
Tsh is still <.01 (.45-4.5) fT3 is 3.2 (2.0-4.
fT4 is .8 (.8-1.7)
So I am “normal” but still taking 10mg Methimazole once a day. I have been advised to cut it to 5mg and retest in a few weeks.
This is the best I have felt in years. No regrets! Still no weight gain, just maintaining the initial loss. My eyes have receded 90% and are discomfort free. I guess looking like Marty Feldman might NOT be in my future after all. Lol!
My neck has transient soreness. There is thyroid tissue still palpable in my neck, but it is very small. Every time my neck hurts it gets smaller and my lymph nodes go crazy for a few days. Then a week or 2 will pass without incident.
I hope I can start cutting down on the Atenolol (50mg twice a day for the last 7 years). I have atrial fib from something else, but the hormone imbalance aggravated it for sure. I see the cardiologist in a few weeks, have to remember to ask her about tapering down.
So far so good! I will keep you updated as soon as anything significant happens.
The anxiety is tough after RAI. No, they don’t tell you to expect it and that IMO is a great disservice to patients everywhere.
It will stop eventually and when it does, it is fantastic! I hope you are over the peak of it today. Have you tried Atenolol for your palpitations? I could not tolerate the propranolol either and Atenolol was my saving grace. Ask about it when you call the office or swing by an urgent care for an ekg and a script if the palpitations are still bothersome.
Your sore neck means it IS working and that is reason for celebration. This will pay off eventually. Just keep your spirits up and know that everything you are experiencing right now is temporary.
Thank you for keeping us posted, we are all rooting for you!
P.S. I was advised to wipe everything in my iso room down with Windex after my alone time was up. The radiatiology tech said something specific in Windex bonds with the iodine molecule and removes the residue from door knobs, remotes, keyboards, bathroom areas all non porous surfaces. My first day out was spent OCD cleaning. I hope you do something fun instead.
Thanks Cat! I appreciate it! I am a whole new me.
2 weeks have passed and I have new blood results. I was taken off the methimazole a week and a half ago to see what happens.
Tsh still <.01 (.45- 4.5) FT4 now 2.7H (.8- 1.7) was “1.5” 2 weeks ago FT3 now 10.5H (2.0- 4.
was “5.9” 2 weeks agoI am no longer in normal range for fT4. But I am only slightly elevated so I do not want to go back on the methimazole. (The nausea was really bad this last round. Splitting the dose made me nauseous ALL day instead of just half of it.)
The consistently high t3 is bugging me.
I am discussing this with my primary care dr tomorrow so who knows what he will recommend. If my levels are higher in another 2 weeks then I will have to consider more pills. Yuck. Until then, I refuse to dwell on it.
Thank you both not only for the encouragement but also for your help through this experience.
Shirley, I have evolved. I have gone from a scared, angry, anxiety riddled mess to someone I actually like. The healing from GD has affected me in many ways.
From the days when I wanted to scream all day to the days I didn’t want to live anymore. Hating myself and the world, not realizing it was GD causing it. I really thought I was crazy and I would end up institutionalized. The irrational fears, hair-trigger rage, clumsiness, inability to speak clearly at times, depression, mania, all of it.
I had no idea it could be the disease and my doctors NEVER made the connection, just threw the newest psych pills at it. RAI was my last resort of sorts because I could no longer live that life.
Reviewing my first posts brought the memories of that life, that person back. I wish someone told me then what I know now. I never would have questioned or delayed the treatment.( Although I probably wouldn’t have believed them then anyway. Irrational fear.)
They all said I would feel better after RAI. I had no idea the “crazy” would disappear too. Now I question how many people that are on psych meds actually just have undiagnosed or undermanaged thyroid conditions.
I am a completely different person. Thank you for noticing.
I am amazed at and proud of the change. So much so that I am looking into becoming a Life Coach. I want to empower other people to get healthy and find their own positive perspective. ( Something the old me would never have even considered. )The physical change is pretty nice too. I am not particularly tall so I look like a Weeble when I am heavy. I put the clown pants and shirts in the GoodWill box today. Good riddance.
