[KimberlyOnline Facilitator January 14, 2013 at 8:23 am Post count: 4294]

#1173558

Thanks for the positive report – wishing you all the best for 2013!

[AzGravesGuy January 25, 2013 at 1:48 pm Post count: 160]

#1173559

For the last 3 days I have been feeling very, VERY hyper. I went to the lab this morning and will know for sure tomorrow. I have been sloppy about taking the 5mg of methimazole every day. As much as I love the results, I resent the commitment, especially when traveling and trying to live life.

The weather keeps changing here so I cannot trust what I feel temperature wise.

Here is what I know….my hr rests at 85 and goes to 128 walking across the room. My hands are shaky when I hold them out in front of me.
I have been feeling prickly heat across my shoulders….familiar.
Anxiety level is through the roof. I have about 8 seconds of peace when I wake up, then as soon as I am fully awake, the fun begins.
Night sweating, jumpy, and today I was a very angry man for no apparent reason. I even surprised myself with what came out of my mouth.

I should have stayed home today.

My suspicion is that the drop in ATD dosage caught up with me. I haven’t felt this hyper in weeks. I am sad to see the calmness go, but as soon as I know the results I will go from there. My GP felt my neck this morning and said I have what feels like a normal sized thyroid. Ahhhhh…..I was originally told NO thyroid by this point in time. Lol!

So, I have to face the possibility that this treatment didn’t take. Does it make me happy? Noooooooooo. Is there anything I can do today besides cope and have a plan B? Nope.

Surgery is out of the question financially. I am not looking to get a second mortgage to have this removed. BUT, I always have the option of chasing the ATD dragon so to speak and just keep my liver in check. I will not repeat the RAI.

I won’t know anything until tomorrow so why I am even stressing over it today is beyond me. It must be the hormones. Something is different this week. It isn’t pretty but it is different. Thank you for being here support group!

I will post my new levels tomorrow! With any luck they will still be in normal range and this will all have been in my head. I am ok with being crazy. It’s the hair trigger attitude I despise more. It really makes personal and professional relationships suffer.

Everyone who knows me or has had the unfortunate experience of working with me through this knows how to handle it. My employees smile and say I “drank a glass of crazy today”. They have been super heroes in their own right for putting up with me. I end up with carry over guilt just the same. I don’t remember what I said but I remember the shocked looks which means I need to apologize. How I end up being so inappropriate and having little to no recollection hours later is completely GD. Like surfing a wave of insanity. Lol!

Tomorrow I turn a page and start fresh. New numbers, new plan. I am excited to get back to the normal I was last week. I am more excited to put this all behind me, but patience is the key to successful treatment. As long I keep believing it will get better and stick to the plan, it eventually will. Keeping the faith has become very challenging this week. It can only get better.

[catstuart7 January 25, 2013 at 5:23 pm Post count: 225]

#1173560

What a bummer! I’m sorry you are appearing to have a resurgence. I like how you put it chase the ATD dragon….that’s what I’m doing and let me tell ya it’s one crafty dragon. But it gives options and buys time. I hope the news is good for you tomorrow.

[VanIsleGal January 25, 2013 at 6:08 pm Post count: 66]

#1173561

Hi Arizona Guy.

Sorry to hear about your rough journey. I am 100% thrilled I chose to keep my thyroid and cancelled my RAI. I have 3 normal blood levels now and I still work with the endocrinologist. I am still on Tapazole.

My current health issue involves a potentially fatal/potentially incurable CA-MRSA infection under my skin in my face, neck, head. The infection has moved to the bone now. I am an outpatient at the IV antibiotic treatment centre and I am working with an infectious disease specialist (actually I have seen two).

I am wondering how this MRSA relates to Grave’s.

Anyway, sending you prayers and healing thoughts…

[KimberlyOnline Facilitator January 25, 2013 at 6:37 pm Post count: 4294]

#1173562

@AZGravesGuy – Oh, no…sorry to hear about this latest setback! Hopefully, this latest set of labs will give you some further direction. I’ve been chasing the ATD dragon myself for 5+ years. I’ve had good luck so far with no side effects, although it *is* important to be 100% consistent with dosing and with regular follow up labs…I’ve needed quite a few dosing changes over the years.

@VanIsleGal – I’m not familiar with a connection between MRSA and Graves’, although it does sometimes strike people with lowered immunity. Hopefully, your doc has been doing a regular check of your White Blood Cell count to make sure that is still in range while you are taking the ATDs. I hope that you can get some relief soon!

[AzGravesGuy January 26, 2013 at 9:31 am Post count: 160]

#1173563

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 3.2

Tsh 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.

[snelsen January 26, 2013 at 12:05 pm Post count: 1909]

#1173564

Hi, I am so sorry that this is happening. You have been through so much, and you (and all of us) thought you were basically DONE with all of this, and back to a relatively normal life.

Of COURSE you are worried and scared about having a brain scan. I have been referred for a couple of them, and both showed absolutely nothing, except that “for my age” my brain “looks really good.” Whatever that means. So this might be an overkill order by your GP, but on the bright side, you will learn about your brain!Whatever that means.
Having unknowns is very concerning. It is hard to live in limbo without answers. I am hoping the answer is simple for you.

But, from what you have said, perhaps you better push a little harder re RAI and your thyroid. If you were told it was gone, yet someone else says it can be palpated, that raises more questions. I did not have RaI< so don't know if it is present and dead, or present and sometimes producing too much thyroid hormone, perhaps 'cause the dose wasn't high enough? Good questions for you to ask. You have been so helpful to legions of people on the forum. Of course, we are all here for you! Keep in contact with us.
Shirley

[VanIsleGal January 26, 2013 at 1:00 pm Post count: 66]

#1173565

How is everyone doing today?

I am okay. My white blood cell count has always been normal and I have taken Tapazole or PTU for about 5 years now. I was in hospital for MRSA and no doctor has ever cared (found it relevant) that I am on Tapazole.

If I don’t improve, I will be scheduled for a CAT scan of my head and worst case scenario I will need surgery to dig the infection out of my face. I am not at this stage yet though. I am still confident the antibiotics can cure the bone infection!

Keep us updated Arizona Guy. I am just taking my Tapazole while typing lol!

Get Well. Many of us are thinking about you and wishing you well. xoxo

[catstuart7 January 26, 2013 at 3:31 pm Post count: 225]

#1173566

AZGravesGuy, sorry to hear things flared up again but it’s good to know there was a reason – just too soon to reduce the meds or skip any. You could always give it more time. I’ve read that sometimes it is harder to determine RAI dosing for men because their thyroids are thicker and sometimes a second treatment is needed. I find it helpful to set reminders on my cell phone to beep at me so I remember my meds. This brain scan is the probably just a formality though since you already have an explanation for what is happening. Still I know it’s scary to have a test on your brain, the mind can go many places.

VanIsleGal, sorry to hear of your troubles too – I hope the infection can clear soon!

[geostyv January 27, 2013 at 7:53 am Post count: 15]

#1173567

AZGravesGuy,

I’ve followed your post with great interests over the last few months. I’m a 37 year old man who had RAI October 11. So our timing is sort of along the same timeline. I have been much less diligent about posting my progress but I have kept up with the forum. What happened to me was not real consistent with what I had read about and might be something similar to what is happening to you.

Basically, after I had the RAI I felt pretty good. I still had some of the hyper symptoms (sweating, going to the toilet a lot) but the heart pounding was less of an issue (though I was still on beta blockers so that surely helped). By mid November I felt OK and my wife said I was much “lighter” than I had been before. I assumed I had missed the transient onset of HYPER symptoms post-RAI, consistent with the thyroxin dump.

Within a week or two later I was a wreck. By Thanksgiving my levels were back up. The endo palpated my thyroid, looked at my levels (which I had diligently done every 3 weeks) and said I had thyroiditis due to the the RAI. This was over a month from when I had the RAI. From Thanksgiving to Dec 11 my levels only went higher still. By mid-December I was a wreak again and we were (me, my wife, and the endo) starting to wonder if the RAI had worked.

Then it did. On January 2 I had labs that showed my lightly hypO with a low, but for-the-first-time-in-a-long-time-normal-TSH. I thought they said over the phone that my FreeT4 was 1.4 (normal on that scale) and imagine my surprise when I went to have another 3 week blood draw and asked for paper copies of my labs (which, I’ve discovered you should always do) and saw that it was actually 0.4 (hypO) on that scale and had misheard the nurse over the phone 20 days earlier.

Anyway, the labs taken on the 22 of January showed .007 FreeT4 and a TSH of 54.3. Yep, it worked alright and now I am on .125 synthriod.

I guess all I am saying is that there was a long time for me between the RAI and the “thyroid dump,” thyroiditis, and hyper feelings and, I too, had begun to contemplate whether the radiation therapy worked and if I would have to do it again or have surgery or just go nuts.

I know that you’ve been at all this longer than I have and all I can do is share my story, offer support, and suggest that, at least in my case, there was a month or so lag between RAI and hypER symptoms so maybe that is the case with you, too.

Wishing you, and others out there riding the Gravy Train, support and a return to good health.

Geostyv

[KimberlyOnline Facilitator January 28, 2013 at 11:46 am Post count: 4294]

#1173568

@Geostyv – thanks for sharing your rollercoaster ride and for the words of encouragement!

@AzGravesGuy – hoping that you get good results in the next couple of weeks with the more consistent dosing. Love the keychain idea — just make sure to keep it dry! I accidentally got a couple of drops of water in a MMI bottle once (luckily there were only a couple of pills left) and the pills turned into a mess of crumbs!

[AzGravesGuy January 29, 2013 at 7:49 am Post count: 160]

#1173569

Thanks for the replies and support everyone. It makes me feel better knowing there are people here that care. I have alienated so many people with my shifting moods, hair trigger attitude and venomous words on bad days, this is the only safe place I have left to vent my frustrations and fears. My circle is tired of hearing about it. I cannot blame them, in many respects I am tired of having something to say.

Monday was a bad day. I woke up hot and was on the verge of tears all day. I am blaming the full moon and overzealous T3.
Starting Sunday I felt like I was kicked in the throat. A stabby pain on the right side of my thyroid. Now it is the dull ache that has been transient since treatment.

Yesterday the dr said it had gotten smaller in the 2 days between examinations. Today the left side really hurts. I am going for an ultrasound on it next week. I wanted to go sooner but I can’t get my schedule to allow it. We have temporarily suspended the mri on my pituitary for obvious mental reasons. Lol! I don’t mind the tube, I don’t want to know.

Today makes 20 weeks since RAI and I am still hyper even with the methimazole. However, I am less hyper than I was before the treatment. So in effect, it DID do something. My dr suspects I am just taking longer to burn out, but thinks it is coming eventually.

Just in the 4 days I have been diligent with my dosing I mentally feel so much better. The palpitations and heat are still a thorn in my side. Not a new thorn, but one I am really, really tired of. I want a divorce from my Graves’ Disease.

Kimberly, my pills are in a tiny metal vial meant for emergency nitroglycerin I got at the drug store. It is water proof and just large enough to hold a methimazole, an atenolol, and a valium….just in case.

Geostyv, I am glad you have had some resolution with your treatment. I was told yet again to be patient. Hopefully I will catch up to you soon. Thank you for sharing your story.

Cat, I set a repeating alarm on my phone 6am, 6pm. Thanks for the tip! It never crossed my mind to use it. How sad is that? Lol

VanIsle, I am happy to hear your wbc’s have not taken a hit from the tapazole use. Hopefully you will be spared any surgical intervention and begin healing soon. I have faith in your resiliency.

Shirley, thank you for being a continuous source of information and support. I appreciate your kind words. The endo that dosed me said I would have burned out by now. I fired her months ago so the fact that she was wrong is not a surprise. Most of her “facts” were skewed and outdated anyway.

Time to get back to work. Again, thank you everyone. I am so grateful to have GDATF in my life.

[KimberlyOnline Facilitator January 29, 2013 at 9:34 am Post count: 4294]

#1173570

Ah, thanks for the info on the vial – others here might be interested in that as an emergency back-up system if they leave home after forgetting a morning dose. (As long as you make sure you know which pills are which if you are storing multiple kinds!)

Take care!

[Sube08 January 30, 2013 at 8:09 pm Post count: 5]

#1173571

I find all of this information most interesting. I too had RAI in March 2012 and I’m still hyper, I take PTU and my dosage has gone form 18 pills a day to 9 since RAI but still taking 40 mg of beta blockers 3 times a day. So I feel your pain AZguy. My dr is encouraging me to have more RAI but since reading stories on this website I told him I’m waiting it out, plus i had to pay a $900 co-pay which I’m still paying for and I remind him I’m still paying for it. I take my meds on schedule and I feel fantastic! My T3 and T4 free are in range or low and my TSH is undetectable but moving up to .006 from .001 so it’s all an improvement to me. I think staying on top of the meds is a big plus and I feel my body is healing from some tramatic events and it’s going to work out. Thanks for sharing your stories, this website is the best thing a Graves patient can find.
Sube

[npattersonModerator January 31, 2013 at 4:19 pm Post count: 398]

#1173572

I hope you find that actually taking the RAI is a “non-event”. No lights go off, no great band music. It’s “Here, drink this (or swallow this”, and you leave. The thing that struck me was that the folks who brought it in to the room left VERY quickly! I just went back to work.

Talk to your doctor about the possibility of being prescribed some ATD to take for a couple of weeks if you are really afraid of the possibility of a surge of hormones being released. It DOESN’T happen more often than it DOES happen, but at least there is an option.

Kimberly mentioned the genetic pre-disposition. That’s the latest theory. If you don’t have the pre-disposition, there’s no way you can develope Graves’, and if you do have it, it may not take much to trigger it. I think the DNA studies are finding it in the DNA of people who don’t have family members who have it. The more important thing to focus on is the fact that you do have it, and you are getting it treated, and you can begin to get on with your “new normal”. I think it is harder for men, partly because you are in such a minority–who do you talk to? We do have some great facilitators who are men, and really do understand. Stay tuned, and good luck. PS You won’t even glow in the dark!

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