[karenz516 January 31, 2013 at 6:32 pm Post count: 74]

#1173573

@AzGravesGuy, I am a Type A personality, I was down to 120 lbs., muscle weakness, extreme fatigue, muscle weakness, couldn’t sleep when I did go to bed, finally my family dragged me to the doctor who referred me to an endo because my numbers were off the charts, when I saw the endo I was in AFib, 180 bpm., he immediately hospitalized me. Long story short on 12/12/12 I had the RAI and my numbers have come down, no more hand tremors, muscles strength is coming back, but I still have the anxiety, the docs also feel its unrelated, but that isn’t helping me. Heart rate on a good day is 50-60’s on a bad day between 90-100’s. My endo and cardiologist feels that my heart will settle down after the thyroid settles down. Good Luck with you RAI.

[karenz516 January 31, 2013 at 6:43 pm Post count: 74]

#1173574

oh geez, you can tell I am new to this site, not reading further up to see that AZGravesGuy already had the RAI. I’ll learn. My doctor did not put me on ATD because I had slightly elevated liver enzymes which they think was due to the statin cholesterol medicine I had taken for years so he did not want to tax my liver, anyway, I am wondering how long from 12/12/12 it will take to have better days. I currently take Pradaxa 150 mg., Metropolol 25 mg., Vitamin D, Prilosec for the Pradaxa, Lisiniprol 5 mg., I just want my heart rate to settle down and some days I feel a little woozy, my endo will start meds once I level out and convert.

[KimberlyOnline Facilitator February 1, 2013 at 9:19 am Post count: 4294]

#1173575

@karenz516 – No worries…thanks for sharing your story! RAI can take varying amounts of time to do its work (one article noted 6-18 weeks), so it does take some time and patience before you will start to see results.

Also, keep in mind that your body won’t necessarily be on the same calendar as your endo! If you start to feel common symptoms of hypO — which can include fatigue, joint pain, weight gain, constipation, dry skin, cold intolerance, and slow pulse — definitely contact your doctor’s office to get a new set of labs, rather than waiting for your scheduled appointment.

Take care!

[karenz516 February 1, 2013 at 11:01 am Post count: 74]

#1173576

@Kimberly, thanks for the information, I do not have those symptoms yet, but I am watching for them!!!!

[AzGravesGuy March 2, 2013 at 11:29 am Post count: 160]

#1173577

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!

[vanillasky March 2, 2013 at 4:22 pm Post count: 339]

#1173578

Hi! I’m so sorry to hear about all those lousy symptoms again! You sound a lot like me only from what I’m told, mine are more menopausal now than ever.

My TSH is 2.39 and I feel rotten. Doctor says it’s my FSH indicating ovarian failure so they assume it’s my menopause.

I know what it’s like to wake up just like someone threw you in a swimming pool. I change my nightgown at least 2x a night.

Hate to say it, but if I were you, I’d go for a TT.

Please let us know how you are doing. You’ve been great support!

Karen

[KimberlyOnline Facilitator March 4, 2013 at 11:22 am Post count: 4294]

#1173579

@AZGravesGuy – Sorry to hear that the docs have declared the RAI a “fail”. Hopefully, you can get things leveled back out on the methimazole, at least for the next few months. Some patients are *very* sensitive to small changes in dose (I am one). When my regular endo went on maternity leave, I explained this to the new doc, and he has been really good about working with me on baby steps!

Yes, unfortunately, the PCIP stopped accepting new applications last Friday! Hopefully, you can hang in there for the next few months, but it would at least be worth asking your doctor (and possibly local hospitals) if there are options for those who do not have insurance. Worth a try!

[AzGravesGuy March 24, 2013 at 4:15 pm Post count: 160]

#1173580

Howdy everyone!

I apologize for the delay on getting back to update my post. It has been an awful past few weeks. I woke up and found myself in a bad place…..it was Fresno. Lol! So I needed to forget about my GD for a while and work on the mental me. Now I am back and ready to take control of my life again.

It has taken every bit of 3 weeks on methimazole 10mg 2x a day to get me back to feeling cooled off. So much for the 1 week of higher dose treatment we orginally planned. I am going for bloodwork tomorrow, as I now feel as normal as I did before last month’s shake up. I do not feel hypo, just normal…I think. It’s hard to discern what “normal” is. There was no point in going any sooner. Now tomorrow cannot come fast enough.

I saw a thread on the forum on hair loss….I miss my hair. What’s left of it had a big texture change in the last week…from regular hair to fuzzy, break off hair. I had a dog like this once…we put him on Levo and his hair came back so I am pretty sure I am close to the same point, only mine is methimazole induced. Again I will start the dance of ATD dosing to find the sweet spot. I am very excited, as nothing has been worse in my experience than running hot like I was. I cannot wait to get on a reduced Atenolol dose as well. I have been exercising and my heart will not go above 95, but my dr STRONGLY advised me to not touch the 50mg x 2 daily dose until labs r back. I do not feel drugged or slow, but knowing I am cooler makes me automatically assume I am overmedicated on it.

I still haven’t found a new endo. I stopped looking. No one can see me sooner than 6 months out. My primary care dr (he’s an MD) is comfortable in the mean time, as I research everything for him, present my findings vs symptoms and we go from there.

I wish I understood why all my local endo’s are booked until November…..ridiculous. So for now, I don’t need one, I don’t want one. I have called 8 offices and they all seemed pretty pretentious once I said I was a “self pay” patient. No thanks, I already don’t want to see you. (Yelp has been a good gauge of the local endo’s…..so glad that brutally honest resource is available.)

I will check back in once I get my results….Tuesday or Wednesday at the latest. My Dr said just come in with them once I get the email and we will talk on his lunch or he will see me inbetween patients. He is frustrated the RAI didn’t work as well. Awesome guy and he knows I am stuck. Why can’t I find an endo with the same qualities?

[smtucker March 24, 2013 at 4:32 pm Post count: 74]

#1173581

Az,

Just catching up with your Graves saga. Wow! Sounds like you have been on a true roller coaster. I have insurance and it took me three endos before I found one that didn’t make my skin crawl.

Hope your numbers continue to trend in a normal range.

*smtucker*

[vanillasky March 24, 2013 at 9:05 pm Post count: 339]

#1173582

Hi Robert! glad to hear from you and that you are doing okay.

Endocrinologists are hard to find and where are the good ones? I have no idea. I have been told there is a shortage of them in this country. I guess they don’t make enough money for the practice and would rather be brain surgeons or something else.

I have been through hyper hell so I know exactly what is going on with how you feel. I almost NEVER feel normal so no matter what.

Hang in there! Please keep us posted. As you once told me: “We have Graves’, it doesn’t have us.”

Karen

[snelsen March 25, 2013 at 7:30 am Post count: 1909]

#1173583

Hi AzGravesguy, ie, Robert (I think)
Your GP doc sounds GREAT! Stick with this awesome guy. I do understand the frustration and delay with getting an appointment with an endo. It goes a lot more smoothly after the first appointment. The people at the desk who control that flow, have the schedule, and on the schedule there are blocks for
New Patient appointments. They are usually much longer, for most endocrine issues are complex (as we certainly know) and they schedule a much longer time, usually 40 min to an hour if you are really lucky.
And then, of course, you have no idea if this endo is the endo for you!
I really like the doc you have, your primary care doc, and it seems that he really has learned quite a bit about Graves’. Have you considered asking his office to make the referral, to the endo? Generally, most specialists (the front desk again) will ask to see recent labs, and some clinical summaries of your”journey” with Graves’. And, I realize you may have already done this,
and it is still a 6 month wait.)
(I am not sure how I feel about this journey stuff, it is becoming an overused word with varied meanings!)

If this has not been done, I suggest you ask you doc what he thinks about that, just for “fresh eyes” to take a look at you whole Graves’ history, and the problems you have.
If you think your primary would find that threatening, I would be surprised, but that relationship you have with him is money in the bank, as far as I am concerned, he sounds empathic and human, and accessible.

There is such an epidemic of diabetes in this nation, that the endo practice
is packed with them.

I am glad you have established some good vibes at work. It takes a lot of work on every level of living to have this damnable disease.

Sorry-I don’t recall you insurance situation right now. Is it still absent from your life?

Thinking of you a lot, so darn sorry this has been such a nightmare for you.
Shirley

[KimberlyOnline Facilitator March 25, 2013 at 11:24 am Post count: 4294]

#1173584

Hello and thanks for the update! As Shirley noted, a direct referral from your primary can sometimes cut through the bureaucratic red tape. Also, asking to be placed on a cancellation list can often get you in the door more quickly.

In the meantime, so glad that you have a general practitioner who is willing to help you through this process. And that’s great news that you are finally “cooling off” — even if it took a little longer than expected!

Take care!

[AzGravesGuy March 26, 2013 at 6:42 pm Post count: 160]

#1173585

Thank you everyone for your support. I let this last hyper bout go to my head and that is not practicing what I preach. I hate being a hypocrite so I am blaming the Graves’.

Drum roll please…..

Tsh – .60 (.45-4.5)
FT4 – .5L (.8-1.7)
FT3 – 2.0 (2.0-4.

I am in low normal range! The sweet spot is so close!

Whooohooo! Time to SLOWLY start backing off the meds! These results just came in so I will have to confer with Dr. Matt tomorrow morning.

You guys are the first to know!

Smtucker, what is it with endo’s being creepsters? I have left mid appointment before, saying “no thanks” to the bewildered dr. If someone makes my skin crawl…I am outta there. I am glad you found the right dr! Thank you for following my story and the kind words of support.

Karen, I feel like we have been to hell and back together and I thank you for reminding me of the mindset I should have. Sometimes a hard slap upside the head from a friend is what it takes. Thank you for that! I read things are changing for you as well and I think that is very exciting. If I had the opportunity you have waiting in Cleveland, nothing would stop me.

Shirley, I agree. “Journey” is over used. I am going to shift to the “Graves’ Experience” from here on out. Dr. Matt has joked that I am more of a GD expert than the endo he knows (and does not recommend. ). He has said I make him do his homework, as I am in a constant state of doing mine as well. lol!
I have had his front office call directly for appointments and when the other side asks the magic question “and what insurance does he have?” The red tape piles on. The one woman even took the other office to task “what do you mean you don’t KNOW if you can see him?” all to no avail. They are tired of seeing me get the run around, as they now have experienced it themselves. They have been very sympathetic to my plight and are amazing at their jobs, but again, ” no insurance – no thanks” seems to be the trend. Most of the endos they call ARE packed full of diabetes patients and I think that is more telling of the real trend in why no one wants to schedule me.
You are constant source of support and information for everyone on this board. If you haven’t been told yet today, THANK YOU!

Kimberly, it has taken so much longer than anticipated I thought it would never happen. There were some dark days in the last month. We have tried the cancellation list but I have yet to get a call…..ever. I am impatient and that makes it worse. I have tried the “call every day” route unsuccessfully. Instead of seeing me as a patient in need I am labeled a pest and forgotten. I need to start looking on your side of town. I hate the drive, but if I have to go as far as Chandler even, that is where I have to go. Seeing how far others drive to see a qualified dr on this forum has made me snap out of my “rules” for finding a dr. This board would not be as great as it is without you. Thank you for your work here and your continued support of everyone who posts.

I can finally relax a little tonight. Time to treat myself to some overpriced organic strawberries!

[vanillasky March 27, 2013 at 9:00 am Post count: 339]

#1173586

@Graves guy. Thank you for your heartfelt words. I try a lot to go by your positive attitude that you REALLY do have and it helps me a lot. As you told me once in a PM, ” we will beat this.” It gives me faith and hope along with alittle help from above. I am glad you finally have a TSH. I know how wonderful it can be. I’ve been there so many times with a 0.01 TSH, I can’t remember.

This board is a saviour. I feel all alone with this horrible disease until I come here. All of you are my FRIENDS.
Happy Easter to all the christians and happy Passover for our jewish friends.

xoxoxox
Karen

[KimberlyOnline Facilitator March 27, 2013 at 10:41 am Post count: 4294]

#1173587

@AzGravesGuy – Many thanks for the kind words! Hoping that this latest dose adjustment finally does the trick for you!

Had to smile at your comments about driving…and how others’ experiences here really put things in perspective. I was lucky to find an endo’s office that is about 20 minutes away. Thirty minutes is about my limit before my patience starts to wear thin. Probably the Graves’ — or maybe all the snowbirds this time of year.

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