Another Thyroid Thread.... (Redux)

Welcome to the fun house, Brandi. My saga is also continuing. I got a call from a nurse today saying they were referring me to an endo (finally) because my cbc was off (I wish I listened better, she may have said low) and my iodine was high, which is weird because I asked for it to be tested because I suspected it was low.

I have been encouraged that my hair has stopping shedding, but it still looks bad, dry and weird. I don't look healthy if my hair is the barometer. I hope the endo figures me out. Although I generally feel a lot better, I suspect there's still something wrong.

I'm off to an endo too. My doc was willing to up my dose, but she doesn't really feel comfortable with targeting a range to make me feel better (though if I do feel better and my bloodwork is good in 4 weeks, I have the option to not go and she'll keep me as is). At my request, she did test all of my antibodies, and I was negative for everything, so no Hashi's. I've been on 50 micrograms for a little over a week. I do feel better - but I did when I first started the meds too so not getting too optimistic. I'm also on 1000 mg Vit D daily at her instruction - probably a very good idea.

Of course, the scrip got screwed up and I had to talk to her nurse to get it re-called in - who argued with me about my dosage and said my values were "perfectly normal." I was more than a little irked.

They said my blood test were normal. Kinda bummed in a way because I thought it might explain a lot. Have my ultrasound on thursday so we will have to see what that comes up with. It all sounds so fly by the seat of your pants with this stuff.
Blueberry it sounds like a rough road I hope it gets better for you soon.
I just want answers as to why my thyroid is swollen.
Sending lots of light and love to all of you!

Find out what your numbers were. I have learned that not all docs agree on the ranges, and you can still be "within range" and have symptoms. I would definitely make an appointment with an endo. That really stinks. Hugs....

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Originally Posted by Blueberry

Find out what your numbers were. I have learned that not all docs agree on the ranges, and you can still be "within range" and have symptoms. I would definitely make an appointment with an endo. That really stinks. Hugs....

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+1. The ultrasound will hopefully be informative.

@Blueberry, your doctor sounds utterly frustrating. I'm so glad you're talking to an endo. although from my experience, some are better than others. I'm hopeful that it will be a step in the right direction.

I just made an appointment today with a third (yes, third) endo. I decided that I wasn't going to waste any time with the second one; I doubt that we'll be able to see eye to eye if she just wants me to do RAI. I think I finally found an endo in Indy that actually specialized in thryoid issues. He treats a friend of mine who has been resistent to traditional treatments, including anti-thyroid meds. Now, I don't necessarily have the same resistance, but I am encouraged that he's been willing to work with her and her parameters. That suggests to me that he listens and is receptive to more than one approach. I'm in the process of culling all of my lab results and diagnostics over the last year and a half. My appointment is on January 18th. Fingers are crossed.

Brandi, I hope that you are able to figure this out soon! It can be so frustrating to know that something is wrong....

Indy, good luck with the new endo! The new one sounds quite hopeful, in the end they have to be willing to actually listen and that can be challenging to find in a specialist. I've never quite understood that...

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Originally Posted by Catrin

Brandi, I hope that you are able to figure this out soon! It can be so frustrating to know that something is wrong....

Indy, good luck with the new endo! The new one sounds quite hopeful, in the end they have to be willing to actually listen and that can be challenging to find in a specialist. I've never quite understood that...

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Thanks! I want to clarify that I have nothing against RAI. I've talked to a number of people, like yourself, who were really sick with GD and for whom RAI offered the best chance of better health. I get that. I'm just not convinced that it's the way to go with me.

I've finally managed to review most of my labs for the last 18 months and am convinced that I have a subclinical form of GD. With SGD, TSH is suppressed, but other levels (like Free T4) are within a normal range. SGD typcially requires less aggressive treatment. Some docs don't treat it at all, and just let it resolve itself. I don't think that's an option for me, but in the very least I think RAI is too drastic a step. My first doc used the "subclinical" term once early on with me, but I didn't understand what she meant at the time and we never revisited it in terms of deciding on treatment. The one and only time I suggested something that would have been consistent with the dx, she shot me down. If the new doctor concurs that that's what I have, I think it'll open the door to a more fruitful discussion about how best to treat me.

Thank you all! I am scared today and feel like crying constantly. I feel this thing when I swallow if my head is at a certain angel so I am constantly reminded it is there. Knowing my ultrasound is tomorrow for some reason I am way anxious now. I want to crawl under the covers and just sleep till I have to go. Instead I will drag my you know what to my bike. Hopefully she will clear my head. My husband is acting odd too. He seems just odd. Maybe it is me? or maybe this is as scary for him and he is trying to keep a low profile with me as to not get me worked up. I don't know......I am doing my best but I feel like I might explode right now!
Maybe I should not have had coffee this morning :)

((((Brandi)))). Hang in there; hopefully you'll have some answers soon. Answers are good, even if the process of getting them is scary.

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Originally Posted by indysteel

@Blueberry, your doctor sounds utterly frustrating. I'm so glad you're talking to an endo. although from my experience, some are better than others. I'm hopeful that it will be a step in the right direction.

I just made an appointment today with a third (yes, third) endo. I decided that I wasn't going to waste any time with the second one; I doubt that we'll be able to see eye to eye if she just wants me to do RAI. I think I finally found an endo in Indy that actually specialized in thryoid issues. He treats a friend of mine who has been resistent to traditional treatments, including anti-thyroid meds. Now, I don't necessarily have the same resistance, but I am encouraged that he's been willing to work with her and her parameters. That suggests to me that he listens and is receptive to more than one approach. I'm in the process of culling all of my lab results and diagnostics over the last year and a half. My appointment is on January 18th. Fingers are crossed.

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I would agree - except that what doesn't come across is that she's concerned, compassionate, and very willing to listen to me (including letting me choose what tests I wanted). So....I'll keep her because she's good at most stuff. I hope the end experience is good. I have an appointment at [Insert local major medical center]. I asked for an appointment with someone with a thyroid bent, and the scheduler said she had just the person for me. I hope it's a good fit - my appointment is in Jan too.

I really hope you finally get some answers from the new endo. RAI is scary stuff, and not necessarily without complications (at least in felines) - though I know lifesaving when necessary. But it seems like overkill for your situation....

((((((Brandi)))))))) I totally get the feeling. I was the same way with my mammo/untrasound for sharp breast pain (nothing found). WRT men - they have odd reactions to possible health issues sometimes. Mine was frantically calling me as soon as I got out of the doc's office. I hadn't thought he was worried at all. Deep breaths.

I'm glad to hear that your doc is good in other respects, Blueberry. I feel the same way about my GP. She has some weak points, but I like her personally and her staff is awesome to work with. She's not the one treating me for the GD, but she's been great in terms of referring me to these endos, one after another, without challenging me as to why.

(((Brandi))) I know this is hard, but try to focus on just the step in front of you. Good luck tomorrow! I hope you get answers and easy solutions.

I got an appt with the endo. Not until Feb, but I'm okay with that. She's well reviewed on Mary Shoman's list of best thyroid doctors, so that's encouraging.

Indy, I think you're making the right decision.

Deep breaths and yoga then off for my ultra sound hubby is going with even though we are not supposed to get an answer till tomorrow or monday. Hoping tomorrow I don't want another long weekend last last weekend.

so the tech pretty much said they will biopsy my thyroid. I saw the picture's and have to agree I would!. My one side is normal so I guess that is good but the other is 3 times the size. The tech said in her opinion it has been there a while. She could not see that happening over night unless there was some trauma that has caused a blood clot and it has burst. Don't want to speculate. But she said to not lose sleep over it. She has seen way worse and besides it is one of the easiest things to take care of.
Hubby took me out to lunch after to one of our fav places and he made me feel better. Promised he would step up to the plate and take care of things if I have to have an operation and if not he would still step up. I am not so scared now though I still don't have answers. Not sure why maybe because of the tech saying what she said. I know she is not a Dr but she does see this stuff all the time.