Questions for all of those out there with thyroid issues

[NbyNW]

(((indysteel)))

I can only imagine your frustration. My dad went through a Graves diagnosis about 7 years ago, and if I remember right it took him the better part of two years to get things under control.

If I remember right, there was a fair amount of trial and error and a balance of art and science to figure it all out. And it was tough on my mom too, because his vision was affected so she became his chauffeur when he couldn't drive himself to work and treatment.

In his case, it helped that he is a Dr. himself, not only in finding specialists to manage his treatment, but also to manage his own expectations. Yes, he was also subject to weight gain and fatigue, and my mother reported moodiness (he of course would never admit this!). And there were times when it seemed like there was no progress at all.

So I think some frustration is normal. It may be that it would help to consult with another Dr., but you might also be starting over from square one. I don't think it hurts to do a little research to see who the specialists are in your area.

[Blueberry]

Indysteel-

I'm sorry that I have no advice to offer, but wanted to extend my sympathies to you. This sounds like such a difficult thing to be dealing with, and I wish you all the best in getting answers that you need and deserve!

[maillotpois]

Indysteel-

I'm sorry that I have no advice to offer, but wanted to extend my sympathies to you. This sounds like such a difficult thing to be dealing with, and I wish you all the best in getting answers that you need and deserve!

What she said. I'm sorry.

I've been pretty lucky with my Hashimoto's - I am to a point where I can self adjust my meds (mostly depending on if its a fat time of year or a thin time of year ) if needed to get the right "feel". I haven't known what my #s are for years, although my doc tests me yearly to make sure things are ok. So I have no feedback on your #s because its been 15 years since I even really had a good handle on what they all mean.

[Catrin]

(((Indy))) it can be frustrating for sure. As someone who had a very advanced case of Graves in her 20's I do remember how frustrating and challenging it was to get under control (in my case we could not which is why my thyroid was removed when I was 25).

Fortunately they are catching it while it is still mild, and that is awesome. No less frustrating because it can be challenging to get the levels where they need to be and keep them there. I no longer remember what all of the numbers mean, I wanted to say that I am sorry you have having to go through all of this. It isn't fun, for sure.

I second the suggestion that it might be worthwhile to get another opinion. Yes it is going back to square one, but the ultrasound and other scans have already been done so at least that won't need to be repeated. Sending good thoughts and wishes your way.

[indysteel]

Thanks for all the sympathy, ladies. I actually don't feel bad right now; I just think I might feel better and that it might be worth playing with my meds a bit more. My doctor just signed off on just that. I'm going to take my current dose every other day instead of every day for the next six weeks. Then I'll get some more labs and see where we are. If I start to feel like I'm undersuppressing in the meantime, we'll reevaluate.

At this new dose, I'll keep an eye on my heart rate, as well as whether I'm sleeping okay. I'm a light sleeper anyway, but when my thyroid was hyperactive, I was waking up feeling really anxious, with what felt like (and likely was) a racing heart. If, on the flip side, my TSH doesn't budge much with this new decrease in meds, then I will consider getting a second opinion.

I just want to see what I it feels like to have a thyroid that is more squarely in the range of normal. Of the various TSH tests I've had over the years, the one that might be a good place to aim for was in 2007 when it was in the mid 2s. I rode 5k miles that year (my first full year of riding), so I must have had a decent energy level! I want that person back.

I think what's most frustrating is just how hard it is to understand the numbers. My doc has explained some of it, but the Internet has been both a blessing and a curse. It helped me appreciate that my GP's original take on my various tests was incorrect (which is why I saw an endo in the first place), but it also makes me second guess not only the tests that my endo is running, but her evalulation of those results. I do think you need to be your own strongest advocate, but it's hard to suppress the urge to out doctor your doctor.

So, we'lll see. Thanks again. I do take a lot of comfort that it appears my case is mild. My sister wasn't so lucky. It didn't help that her GP at the time assumed (based on her bevy of emotional problems) that she was suffering from anxiety. He treated her with drugs that masked some of her thyroid symptoms. It wasn't until she tried to go off of those drugs several years later that they realized his mistake. By then, she'd sort of gone off the deep end in a lot of ways.

[Koronin]

(((HUGS))) I really only can offer my support. Although both my sisters have thyroid disease (one has Graves, the other has Hashimoto's) I really don't know a lot about it. They both take Lamictol for it. (I'm sure I did not spell that correctly). My sister with Graves actually had to have surgery to remove the lymph-nodes.

[indysteel]

Thanks, Koronin. I sure hope you're keeping a close eye on your thyroid!