Questions for all of those out there with thyroid issues

Ugh; I'm so confused. Just a little back story for those of you who may not have been following along at home or who are new to the forum (like Danielle). My annual bloodwork in June showed a TSH of .125. From there, I had an ultrasound and a radioactive iodine uptake scan. The ultrasound was consistent with Graves. At first, it would appear that my uptake was normal, but having since been referred to an endo, it too was consistent with mild Graves. My sister has Graves, so that makes sense from a family history standpoint. I would note that previous bloodwork from 2006 to 2010 revealed that my TSH tended to run close to or just at the high end of normal, i.e., in the range of 3. My docs had never mentioned that though.

My endo started me on a 5 mg dose of Tapazole in August. At that point, my TSH was .135. I don't know what my other values were, but I also tested positve for the antibodies consistent with Graves.

At the end of September, I had new bloodwork done. My Free T4 was 1 and my TSH was 3.44. The doc told me at that time that she really wanted to get my TSH in the range of 1. So, I halved my Tapazole dose. I just had new blood work done. My Free T4 is 1.1 and TSH is 3.31. I haven't talked to my endo directly but her nurse did and instructed me to continue with my present dose of Tapazole. I'd note that the reference range for the lab for TSH is .4 to 4.5--but everything I read suggest that a reference range of .3 to 3 is a better standard.

Anyway, I told the nurse I was frustrated. In September, the doc said she wanted my TSH to be closer to 1. Now 3.31 is okay? From a symptomatic standpoint, I honestly don't know how I'm suppposed to feel. Some days, I feel more fatigued than I should, but maybe that's life. I just don't know. Given that my TSH was running high prior to June of this year, maybe that's just where my body wants to be, but maybe there's something else going on with me entirely, i.e., Hashimoto's, or maybe I just don't know how good I might feel with a less sluggish thyroid. I gained five pounds not long after I started Tapazole and haven't been able to lose it, but I'm not gaining more on top of that (that isn't likely related to Christmas treats). I've lost a ton of hair over this period and I have almost no libido, but beyond that, I don't know that I feel all that off.

So, can somebody help me figure any part of this out? I like my doc okay, but I'm not totally secure with her at this point either. I could just play with my dosage on my own and see how it feels I suppose, but I'm just confused.

Thanks!

(((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.

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!

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Originally Posted by 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!

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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 :p ) 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.

(((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.

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.

(((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.

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

I get mine checked once a year with my annual check ups to make sure all is well. My previous doctor felt we just needed to check it with the annual check up unless I felt something was off. Had to get a new doctor last year after moving across the state. My new doctor also felt since I've not had any issues that checking it once a year should be fine just to make sure it's alright. My old doctor even covered the cost of it when my husband was unemployed and we didn't have any insurance as she felt it was that important and knew it was going to be a strain for me to pay for it.

That's a nice doctor! An annual test is sufficient IMO especially if you know the various symptoms to keep an eye out for. Mine were pretty mild. I always feel guilty complaining about Graves when I know that some of you, e.g., Catrin, had it pretty rough.

I had an awesome doctor. Actually a husband and wife team that are both family practice doctors and both very good. I do miss my doctor.

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Originally Posted by indysteel

That's a nice doctor! An annual test is sufficient IMO especially if you know the various symptoms to keep an eye out for. Mine were pretty mild. I always feel guilty complaining about Graves when I know that some of you, e.g., Catrin, had it pretty rough.

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No need to feel guilty - Graves is NOT fun, mild or advanced. I feel for your sister after reading your post that they didn't catch it for a few years. Graves, if it gets out of control, effects the body, emotions and even the mind in profound ways. Unless you have a very firmly grounded personality you can get lost if it gets bad enough...I know I did. I lost my 20's because of it and paid the consequences for that, in some ways I still am - but that is life.

I am very glad that you caught this while it is still mild, I don't think ANY thyroid problem - at any stage - is easy to deal with. The thyroid just affects so many things...If you ever want to talk about it directly you know how to contact me :)

I do not know if I would be of any help. I'm dealing with my own struggles with Hashimoto's and mild hyper situation. I have not gone to an endocrinologist yet, however, I think it is on the near horizon. Really after reading your experience, it makes me think twice about moving to the endocrinologist sooner.

I'm not on any meds at this time. I am a bit afraid of what the endocrinologist is going to do or say. I guess the biggest thing for me, is will they do something. My current GP has just been observing and not prescribing anything.

That's my story in short form. I hope you can get some resolution for you. Sorry for a small hijack. I wish there were more people out there that knew more about the thyroid and how it behaves-medically.

Red Rock

(((Red Rock))). Notwithstanding my reservations about my own doctor, I would urge you to see an endocrinologist. Try to get a recommendation for docs in your area. I'll be honest that most endos focus on diabetes, but there are those out there who understand thyroid disease. Ideally, you can find a doctor who is willing to treat you and not just your numbers. You may have to wait awhile for an appointment. In the meantime, arm yourself with as much knowledge as you can. I realize the internet can be both a blessing and a curse, but there are reputable sources of info out there. I would suggest not getting bogged down in message forums about thyroid disease; they'll scare the heck out of you. If and when you see the endo, ask a ton of questions and take notes. Good luck.

Thanks Indy for your thoughts. I think the hardest part of having thyroid problems is living in your head, reading all of the internet stuff, dealing with your doc and somehow being able to come to some sort of conclusion with all of it.

I really appreciate your comment of heading directly to the endo. I have thought about that a lot today. I do not have insurance, so I will be taking this in the pocketbook for sure. But if they can get me back to my "normal" self, that would be wonderful.

Right now, if I stay with the GP I will not move forward but if I switch to the endo, I will hopefully get help to move me in the right direction.

As far as understanding the numbers...I'm with you there. Fortunately, I was taking Med Tech classes and have since kept all the text books. It helps me in my understanding of everything. There is also LabTests Online too as a resource.

Sending you postive and healing thoughts....

Red Rock

Indysteel (and everyone else with thyroid issues), sorry you are dealing with this.

It took me years to actually get diagnosised with graves, then 6 months on a low dose of PTU has put me in remission for 5 years but it was a FIGHT!

The first thing I'd recommend is looking at Elaine Moores website: http://www.elaine-moore.com/. Looks of good info and if you email her labs with questions she will answer:) She is not a dr but considered an expert on thryoid disease.

Next you need to chart, if you haven't, your labs and dosage. Meds changes can take up to 6 weeks to show up in your lab work so don't make adjustments too fast and most meds will require you to be weaned off of them.

As far as what is normal - normal is all relative. My "normal" body temperature is 97.8. Know your body and how it reacts so that you can talk in a factual, nonemotional way to your dr. You should have a good relationship with your endo/internal to the point of having a standing rx for your labs when you feel they need to be checked.

Most dr. will treat you in a way that is most convenient for them, from my experience. Unfortunately, most patients are noncompliant so if you feel you want to be treated a certain way you need to stand up for yourself.

I'm not a dr. (and I don't play one on tv) but if you are hyper your tsh shouldn't be so high. Mine is almost non existant (so I'm on the verve of going hyper again). Keep asking questions, doing research, and find the right person to treat you. You should feel like you normally do. Hair loss, hot flashes, heat intolance, not being able to sleep, mood swings, fatigue, heart palpations, etc. all mean you're not in your normal range. I feel the best when I'm at the high end of the normal range for my Ft3 and FT4.

Hope that helps and I wasn't just rambling:) Good luck with it - it is definitely a process.

I'm back to the drawing board. I halved my dose per my doc's most recent instruction. She said to take 2.5 mg (half a tab) every other day, but I've instead been taking a quarter tab every day. Same difference I figured. Well, I've slowly watched my resting heartrate go up and last night it started to get uncomfortably high. At one point, it was 85 bpm. Not good. So, I'm going to play around with the dose. I might try a half tab one day and a quarter the next. My pill splitter is coming in handy!

Thanks to all and the encouragement of all on this thread. You were motivation to go an endocrinologist. I have an appointment next week. I certainly hope it is more than a meet and greet session. I want some progress somehow.

Red Rock