Jump to content

And new doctor


Deb

Recommended Posts

I promised a lot of y'all that I'd let you know what I found out at the endocrinologist today and I'm sorry for the cross posting since some of you got this information already. But I'm home from the endocrinologist and have some interesting and potentially encouraging news. First and foremost, I like this doctor. He listened to me and paid attention to my history as well as what's happening now.

I don't have Graves Disease any longer. The TMNG (thyrotoxic multinodular goiter) has morphed itself into Toxic Autonomous Adenoma, or Plummer's Disease. In other words, the nodules in my thyroid are no longer cystic in nature, they've developed themselves into "daughter" glands and are autonomously producing even more thyroid hormones on their own. Since I have (at last count) 7 of these nodules, it's no wonder that I've been so sick. Because the medication I've been taking (Tapazole) doesn't impact TAA or Plummers, it's basically been doing no good at all. The doctor ordered enough blood drawn to feed an army of vampires for about a month and as soon as the results are back, he'll give me a new medication cocktail. The new meds will individually treat the T3 and T4 levels to try to get me back in balance. Hopefully they'll have the results of the bloodwork back within a week or so and we'll wean me off the Tapazole and begin the new medication regieme. I'm really relieved that he didn't order the radioactive idodine uptake test. Since the last time they did that and then started me on synthroid, I ended up in ER with a thyroid storm, he'd rather not take the chance that it might have been the radioactive iodine uptake that contributed to it. Considering the survival rate of a thyroid storm isn't all that great, I'm really happy that he said we aren't going to do that. He personally knows my old endo and is going to contact him for the initial diagnosis as well as getting my previous records and the results of my last ultrasound from my doctor in Sterling before he has another ultrasound done. Surgery has not been ruled out and I think there's a strong possiblity of that happening eventually, but we're going to try the combination of meds first and see if that will help reduce the activity in these daughter glands or reduce the size of the nodules at all.

Okay, that's about all I can type right now but it brings you up to date. Keep your fingers crossed that they'll get the results back soon and start the new meds to bring back the old Deb. I know I haven't been around a lot lately and it's just that I've been too exhausted and sometimes to weak to even type. Wanna know the worst of it? I haven't even been working on minis for about the last three weeks---which might be a good thing because my muscle control and coordination has been waaaaaaay off and it's probably not a good idea for me to play with knives. I've just been too tired and disoriented to do much of anything except go in circles. I'm too exhausted to do anything and too hyper/nervous to just sit still.

Right now, I'm going to go park myself on the couch with a bottle of vitamin water, a valium, and the newest Stephen King book I picked up on the way home.

Hugs to you all,

Deb

Link to comment
Share on other sites

Glad you like the doctor and he is searching for a way to best help you. Hang in there, keep us posted when you are able and know you have the entire forum sending prayers, positive thoughts and energy your way.

Link to comment
Share on other sites

Deb -

I've said a prayer for you. I'm sorry that you've been so sick. I hate taking meds, and can understand your frustration at having been prescribed the wrongs meds. It's good that you've found a doctor that you can trust.

Meanwhile, relax and enjoy your good read.

Hugs

-Susanne

Link to comment
Share on other sites

Deb so sorry for your plight. Nothing worse than being misdiagnosed and taking meds that don't help!

Actually, I was never misdiagnosed. At the time the tapazole was prescribed it was the correct med for the condition I had. Even the synthroid was correct because when they put me on it, I had an underactive thyroid. The problem is that my body does these extreme changes that it shouldn't do. The synthroid and radioactive idiodine triggered my underactive thyroid to go into overdrive which created the Graves Disease. The Tapazole was the correct treatment for that and for years it really did work. It actually helped reduce the size of some of the nodules for the first few years. However, those nodules can morph into autonomous adenoma and when they do that, they turn into little thyroid glands inside the thryoid glands producing their own hormones on top of what the actual thyroid is producing. What kinda freaks me out is that the toxic autonomous adenoma doesn't usually occur in TMNG patients until they're in they're 70's or 80's. My endo noticed that I'd also started thru menapause in my 20's. <sigh> Apparently my body clock is running about 30 years fast.

So it's not that the doctors haven't diagnosed me correctly, it's just that my body keeps changing. While I don't especially want to have my throat cut, I'd almost rather have my thyroid removed than have it keep playing these "Guess what I'm gonna do now!" games. But it's not the doctors and to be honest, I really can't even blame myself for not going to the doctor sooner. The changes are very subtle and slowly progressive so they're hard to identify until you're really sick. But I've got a good team behind me now. This endo knows my first endo personally and he'll get my records from him. He'll also get my records, ultrasounds, and other test results from my other doctor back home. My doctor back home is a wonderful man and he's cared for me thru a lot of problems since my 20's so I know he'll be working back and forth with this new endo to put together the whole picture and I know now to keep better track of my symptoms.

I really appreciate all the well wishes and prayers you guys. That means more to me than you know.

Deb (heading back to the couch now)

Link to comment
Share on other sites

Deb, I'm glad too that you like the new doc and that you feel positive about the direction of things. I will continue to add my prayers and good wishes and good vibes to everyone else's and send them your way.

Link to comment
Share on other sites

Deb, I am so happy that you found this all out now. You are on your way to getting yourself back on the horse (so to speak).

Not happy with the diagnosis but happy that you have one. I will be thinking about you and sending speedy thoughts to the lab techs to hurry hurry hurry!

I saw the new Steven King book in the store yesterday...Going to get it on Friday! Tell me what you think of it so far..

Link to comment
Share on other sites

Well Miss Deb!

what can I say but good luck in the process of finding good health!

sounds like you made a good start by finding a Dr who listens to you and is willing to go that extra mile to help you! the right Dr can make all the difference!

now be a good patient and go to the couch and REST!

your miniatures are most understanding and we will take what we can get!

HUGGGZZZ

nutti :bounce8:

Link to comment
Share on other sites

I'm so sorry you're having to go through all this! Dealing with a chronic health condition myself, I know how challenging it is to deal with such things. It sounds like your new doctor is on top of things, though. I hope you get some balance in the condition soon and can get back to more like your sweet self! Take care.

Link to comment
Share on other sites

By now I hope you're feeling better. The most upsetting thing about these sneaky ailments is that afterwards the ramifications and possible bad scenarios all begin to occur to you and there's the mixture of OMG! and intense relief battling for attention. Stay on the couch & enjoy your book!

Link to comment
Share on other sites

Deb, I'm so glad that this doctor was able to figure out the problem. I hope you will soon be feeling more like your "old" self, and we will once again enjoy your terrific company! Rest, relax, read, rejuvenate.

Positive, healing power coming your way - strap on your seatbelt!

Link to comment
Share on other sites

Deb, I hope this message finds you much better and you've been getting lots of rest. You've always been the one to make us all giggle with your wicked sense of humor and you've been missed alot. I'm joining the others with a prayer and wish to see you back to your old self once again.

Link to comment
Share on other sites

Deb, I hope this message finds you much better and you've been getting lots of rest. You've always been the one to make us all giggle with your wicked sense of humor and you've been missed alot. I'm joining the others with a prayer and wish to see you back to your old self once again.

Thanks guys. I'm really looking forward to being me again too. I haven't liked myself much lately. I think that if I've learned anything so far, it's been that I can't become complacent about my illness since apparently my body can change so drastically. I'll be much more diligent in monitoring it from now on. This doctor is suggesting bloodwork about every three months to keep an eye on the T3 and T4 balance and more regular ultrasounds to monitor the nodules. (fortunately, it is very seldom that these nodules turn cancerous so that's good) I still haven't gotten any results back yet, but that could take another week or more so I'm just kinda limping along here. I find it ironic to be too hyper to sit still and too tired to actually do anything. But!! <insert cheering here> I did get into the studio last night and got some half timbering stained and applied so that made me feel much better. (did you know that those flat spindles that come with the Houseworks simple staircases can be whacked up into decorative pieces for Stuart style exteriors?) I'm hoping that tomorrow I'll be able to go thatch the roof. <grinning> Y'all know how it tickles me to put a bad hairdo on a house and it doesn't involve playing with knives. :wave:

Deb

Link to comment
Share on other sites

The part that bothers me about the thyroid excesses is the effect it all has on the heart, so I'm all for the extra monitoring. Stewart, huh? Half-timbering & thatch, huh? Do tell! (crossing arms and fluttering eyelashes) You have my full attention!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Recently Browsing   0 members

    • No registered users viewing this page.
×
×
  • Create New...