Another Thyroid Thread.... (Redux)

[emily_in_nc]

That's really encouraging news, Blueberry. Glad you found a doc you like and feel like you can trust. That's so important!

[indysteel]

The roller coaster that is my thyroid continues. My latest bloodwork shows a TSH of .004. So, i'm back to being hyperactive. Way hyperactive. Just to recap: I went on methimazole in August of last year after being diagnosed with Gravaes. It promptly put me into a hypo state, no matter how miniscule the dose. My doc finally took me off of it to see if I was in remission. Even after I stopped taking it, my TSH was still in the hypo range. I was tired and down all the time. So, she put me on Synthroid in July. At the six-week mark, my TSH was .6, i.e, getting close to hyper (which is generally considered .3). I continued to dose, although some days I would only take half a pill because I was started to feel kind of hyper. I saw the endo again this past Friday, and my bloodwork shows that I'm definitely hyper again. I'm not supposed to take the Synthroid again. I talked to her nurse and asked for a full blood panel order, i.e., Free T3, Free T4, TSH and my antibodies testing, in four weeks time. She's going to talk to the doc. I honestly have to wonder if I have Hashi's not Graves. Whatever I have, I can't seem to find normal anymore. And I'm beyond upset about it. Sobbing uncontrollably upset. I don't know who I am anymore or what I'm supposed to feel like.

Clearly, I need to get a second opinion. I just wish someone could explain what's going on to me.

[Catrin]

Oh Indy, I am so sorry that you are on this roller coaster and hope your endo (or another one) can help you figure this out sooner rather than later!

[indysteel]

Thanks, Catrin. I do, too.

What really pisses me off is that this ruined an other lovely day off. I had just gotten home from Brown County and my first MTB ride since I rode with you. It was a great day for it. The trails are in okay shape. You can tell that between the erosion of the summer drought and the recent rains, they've deteriorated to some degree. Roots and rocks are more exposed. Most of the trails were dry, but I had to ride through a small stream near the end of the NTL.

Okay, I'm stopped sobbing for now. I haven't cried like that in ages. It was cathartic.

[Catrin]

Thanks, Catrin. I do, too.

What really pisses me off is that this ruined an other lovely day off. I had just gotten home from Brown County and my first MTB ride since I rode with you. It was a great day for it. The trails are in okay shape. You can tell that between the erosion of the summer drought and the recent rains, they've deteriorated to some degree. Roots and rocks are more exposed. Most of the trails were dry, but I had to ride through a small stream near the end of the NTL.

Okay, I'm stopped sobbing for now. I haven't cried like that in ages. It was cathartic.

Sounds like the cry was needed, and hopefully things will go up from here.

I am not surprised the trails show the effect of the drought plus hard rains. I was there last weekend, but only rode Pine Loop and about half of the NT Connector with someone new to the trails there. I didn't notice anything, but then again those are the trails with the most gentle grade and Pine doesn't have any roots or rocks to speak of. Hoping to get some riding in Friday and Saturday before the Breakdown.

[redrhodie]

Oh, Indy, that really sucks. It's so hard waiting for time to pass so you can re-test, especially when you feel badly.

I wish I could do something for you. Virtual hugs are all I got.

[Blueberry]

Indy-

I wish I had words of wisdom to offer - just lots and lots of sympathy. Feel what you need to feel, and then move forward with finding a doc to give you a second opinion.

[redrhodie]

Indy, what dose of Synthroid were you on?

[indysteel]

Thanks, ladies. Virtual hugs are most welcome.

Red, I've been on 25 mg--I think the same as you. It's weird, because I actually feel okay these days. I don't sleep real soundly, and my HR has been elevated a bit with exertion. Resting HR is just fine. I haven't felt the crazy anxiety/irritability that I initially felt when first diagnosed. This is why I'm going to insist on a full blood panel. The antibodies associated with Graves can skew TSH; it's really better with autoimmune related thyroid disease to dose from Free T3 and Free T4 levels. I'd really like to see where those are. Of course, if my endo appreciates that distinction, she's never let on. Ugh, I need to find a new doc.

[Crankin]

I wish I could help, Indy. I know nothing about thyroid disease, except that after reading all of these threads, sometimes I think this is what my real problem is.
I know I have enlarged thyroids, but after 3 years in a row of ultra sounds and no change, my endo said to take a break. She's the same one treating my osteoporosis, so I think I may talk to her. My borderline high bp, only at times, when most of the time it's low, and my semi- high HR when exercising (not scary high, but high) makes me wonder. All of your experiences doesn't make me hopeful that she even knows anything, but I may look into this. Generally, I like this doc and she takes a lot of time with me when I go in for the bone issues.
Keep us posted. Crying is good.

[redrhodie]

Thanks, ladies. Virtual hugs are most welcome.

Red, I've been on 25 mg--I think the same as you. It's weird, because I actually feel okay these days. I don't sleep real soundly, and my HR has been elevated a bit with exertion. Resting HR is just fine. I haven't felt the crazy anxiety/irritability that I initially felt when first diagnosed. This is why I'm going to insist on a full blood panel. The antibodies associated with Graves can skew TSH; it's really better with autoimmune related thyroid disease to dose from Free T3 and Free T4 levels. I'd really like to see where those are. Of course, if my endo appreciates that distinction, she's never let on. Ugh, I need to find a new doc.

Is 25 the lowest? I'm on 100 mcg.

I know what you mean about the doctor. I'm just seeing an NP, and I know she doesn't know much about thyroid, but it seems like a crap-shoot with doctors anyway, and who knows if the next one will be better. I'm keeping my fingers crossed that I keep feeling well. My hair is still an issue, and that will be the thing that gets me to a specialist if it doesn't show some improvement in another month. Patience is required with thyroid problems even once your levels have normalized, and a bit of determination is needed just to get diagnosed. After that, I hear it gets better, so don't lose hope.

At least you're not alone!

[indysteel]

Yep, 25 mg is the lowest. What's so weird is that I am seemingly really sensitive to both drugs, even at really low doses I don't get it. That's why I want her to look at Free T3 and T4.

[indysteel]

Insert stream of expletives. When I talked to my endo's nurse yesterday about getting a lab order that included more than just TSH, she said she'd talk to the doc and get back to me. Well, she just got back to me and it was clear from the response that even if I get the labs done, the doc isn't interested in using them for treatment purposes. So, what's the point? I told the nurse that I just didn't think the doctor and I are on the same page and that I was going to find a new doctor. I then (after I stopped crying again) left a message for my internal medicine doc for some additional referrals and asked for some help in the meantime sorting myself out (mostly because I anticipate that it will be a matter of months before I can see anyone). She offered to do that when I saw her in June and explained that I felt like my endo and I were just not communicating very well.

I've really got to get it together though because as much as I find crying cathartic, I can't be doing it at work. I was lucky to be off yesterday for Columbus Day, but I can't have a repeat today.

[e3rdpower]

So sorry that you're getting the run around. Free T3 and Free T4 along with antibodies are definitely what they need to look like. Hopefully your internist will order them for you, much sooner than June. It sure sounds like Hashi's.

[indysteel]

My problem with my endo's fixation on TSH is this: The antibodies at play in any form of autoimmune thyroid disease can skew TSH. So, it's important to look at Free Ts. It's not uncommon for TSH to be suppressed in Graves' patients even when their other values are ideal. But her nurse said something about how my disease was so "mild" that it wouldn't show on the Free Ts. That just doesn't make any sense. And if it does make sense, I'm just at a point--in terms of my lack of confidence--that I'll need to hear that from someone else.