Doctor frustration

[indysteel]

I'm so frustrated right now. While I was in the process of getting diagnosed with Graves' Disease, I read more than a few accounts online of patients' frustrations with their doctors--GPs and endos alike. Perhaps because of that, I've been pretty insecure about my own care.

It turns out my insecurity is arguably well founded. My endocrinologist and I have been playing around with the dosage of my anti-thyroid medicine over the past number of months. I'm due to get my blood drawn this week to check my levels. Her lab order only covers TSH (thyroid stimulating hormone). Well, in an effort to educate myself about the disease, I've recently learned that TSH is a really unreliable marker once meds are started and that Free T4 (and to a lesser extent Free T3) are what really need to be examined.

So, that bit of information really has me worried that my endo has no clue how to treat GD--at least with meds. What to do about it? As it turns out, I've felt really off the last few days and I've wondered if I'm either over or undersuppressing. I made a call to the endo's office and talked to her nurse about how I'm feeling and whether it warrants expanding the lab order. She's going to talk to the doctor about it. I hope that I can at least get a broader test on that premise.

But the larger issue remains. I have an appointment with the endo in late March and will likely use that as an opportunity to discuss her approach to labs--hopefully in a diplomatic way. But should I even keep that appointment or is it time to simply start over? That's a difficult proposition in some ways because Indianapolis isn't crawling with endos who specialize in thyroid disease. Those that do are often difficult to see. But by the same token, it's very difficult to put herself in a potentially adversarial position with your doctor. I'm just not sure how to handle this. I have thought about talking to my GP about this, but she more or less gave me an incorrect diagnosis when this first started so I'm not sure she'd be much help.

I'm partly venting here, but if anybody has any suggestions for how to deal with my situation, I'd really appreciate it.

[redrhodie]

Have you gotten a second opinion? I think that will ease your mind, and if the new treatment plan suggestion is very different from your current one, you'll have options.

I really hope you figure it out, and get it under control soon!

ETA all the literature I've read says doctors should be okay with your seeking a second opinion.

[indysteel]

Have you gotten a second opinion? I think that will ease your mind, and if the new treatment plan suggestion is very different from your current one, you'll have options.

I really hope you figure it out, and get it under control soon!

Yes...that arguably seems to be in order. I'll be honest that I don't really know how one goes about doing that with an insurance company hanging over your every move. I'm really intimidated by the entire world of health care.

[Becky]

(((Indy)))

It has been my experience with my own endocrinologist and NP that they're willing to engage in discussions when I ask questions or push back a little. Don't be afraid to respectfully question why she's doing or not doing something. I think you're on the right path with self-educating and with questioning the lab order you've received.

If it were me, I'd keep the March appointment, especially since you're feeling "off" and it could take months to get an appointment with a new doctor.

As for the second opinion: I've never done it myself, but your insurance company may have a program for second opinions. It might be worth asking...

Good luck!

[indysteel]

Thanks, Becky. My boss and I just discussed this, too. He's not a medical expert or anything, but we share the same insurance, so he at least understands things from that perspective. He suggested that I keep the March appointment and that, in the meantime, I make an appointment with a second doc, too. I would like to give my doc a chance to discuss this with me, hopefully in a non-confrontational way. I certainly don't consider myself an expert on the thyroid, but I've read enough at this point to have a feel for some of it. I just want to feel secure that we're looking at the right lab values.

[bmccasland]

(((Indy))) - when you go for the 2nd opinion, make certain you take copies of your lab results. That will help Doc #2 see what you've had done.

[indysteel]

(((Indy))) - when you go for the 2nd opinion, make certain you take copies of your lab results. That will help Doc #2 see what you've had done.

Thanks for that sound advice; I was already hoping to get my hands on all of them. I have the last set, but not the first two. Is there a polite way to get them?

My doc did agree to order a broader set of labs, so I'll either have to talk to her about this issue when my results come in or when I see her in March. Now I just need to find another endo.

[jusdooit]

You are correct that in most cases a Free T4 is best for monitoring treatment. Sometimes in conjunction with TSH. It may be that FT4 is not immediately available at the lab where your testing is performed, which may influence her decision to order it. I would have a frank discussion with her about your concerns and let her know you've been doing some self education on the subject. A good physician will not feel threatened and actually respect your desire to be a proactive participant in your care. As far a getting copies of your labs, you should only have to sign a release to get them either personally or sent to another physician.
Good luck!

[Artista]

Indy, I just ask for copies of my lab reports in a friendly manner. I don't even offer an explanation for why I want them. The office personal have always accommodated my requests with no questions asked.

[indysteel]

Thanks everyone!


You are correct that in most cases a Free T4 is best for monitoring treatment. Sometimes in conjunction with TSH. It may be that FT4 is not immediately available at the lab where your testing is performed, which may influence her decision to order it. I would have a frank discussion with her about your concerns and let her know you've been doing some self education on the subject. A good physician will not feel threatened and actually respect your desire to be a proactive participant in your care. As far a getting copies of your labs, you should only have to sign a release to get them either personally or sent to another physician.
Good luck!

She's tested for FT4 before so I believe it's available. My last two labs show that it's low normal. My TSH is high normal so my assumption is that I'm oversuppressing. I may need to cut the dose again (and i had to talk her into the last cut). My dose is already so low that I have to wonder whether I need it all or am a candidate for block and replace.

[e3rdpower]

Agreed for sure on copies of your labs. I keep them all. Also make sure to ask for Free T3, as that is the active thyroid hormone. Some of us (I am one) do not convert T4 to T3, so we have to take a combination thyroid replacement. (I am on both Synthroid and Cytomel) It is very frustrating, as so many endo's are not versed in optimal thyroid treatment, especially for athletes.
Good luck and take care.

[Red Rock]

Just wanted to give you my 2 cents worth. I can understand your frustration, as that is how I have been feeling with my situation. I felt like since I had this thyroid thing, that I had to be better educated than the doc. However, now that I am with an endo who, I think is super educated and seems to understand everything. (He should with a Ph.D and FACE qualifications) Perhaps I will get real results.

As far as you are concerned, I would go with what everyone has suggested. Keep a record of all of your blood draws and results through time. Yes, its the FT3 and FT4 that show what is and is not happening in the thyroid. I have had to go back and reread some of my med tech books to get a better understanding of all of this. If your intrested look at a Clinical Chemistry book. It might tell you more than you want to know.

I like your idea of getting a second opinon as well as trying to talk to your endo in a reasonable manner.

Hope it all goes well and you can get some resoution.

Red Rock

[indysteel]

Just wanted to give you my 2 cents worth. I can understand your frustration, as that is how I have been feeling with my situation. I felt like since I had this thyroid thing, that I had to be better educated than the doc. However, now that I am with an endo who, I think is super educated and seems to understand everything. (He should with a Ph.D and FACE qualifications) Perhaps I will get real results.

As far as you are concerned, I would go with what everyone has suggested. Keep a record of all of your blood draws and results through time. Yes, its the FT3 and FT4 that show what is and is not happening in the thyroid. I have had to go back and reread some of my med tech books to get a better understanding of all of this. If your intrested look at a Clinical Chemistry book. It might tell you more than you want to know.

I like your idea of getting a second opinon as well as trying to talk to your endo in a reasonable manner.

Hope it all goes well and you can get some resoution.

Red Rock

Can I come to Colorado and se your doc? :o Maybe he'll give us a discounted rate!

I'm starting to learn what I think I need to know. Elaine Moore's website has been a big help in understanding not just my labs, but where I want my labs to be. I did get my blood drawn today and should have the results in 48 hours or so. How my doc responds to them--assuming they're "off"--will be telling.

[Catrin]

{{{Indy}}} Nothing constructive to say, just sending you good thoughts and hopes this eases soon. I've never had a question about getting copies of my test results.

[indysteel]

Well, labs suggest that I'm still oversuppressing, i.e., the anti-thyroid drugs are putting me into a mildly hypo state. That, unfortunately, is no better for me, especially as it relates to my eyes. My doc asked me to take my dose down again (to 2.5 mg every other day). That's a very minor reduction in my dose (I'm currently alternating between 2.5 and 1.25 mg daily), and I'm not all that confident it's going to do the trick. So, I left a message with my doc's administrator to discuss the possibility of using a block and replace technique. Per that technique, I'd continue to take an anti-thyroid med, but I'd supplement it with a small dose of synthroid or the like. Not only would it get my thyroid levels to a better state, but I've read that it can also be helpful for purposes of remission (which is my ultimate goal). If she's receptive to that, great. If she's not, I'm definitely going to seek a second opinion.

[WindingRoad]

First don't ever feel odd about asking your doctor questions. Any good clinician will be receptive and should not take these questions personally. No one knows you better than you so they need to know what you are thinking in terms of treatment too. It's treating the whole person not just their body.

Am I understanding that the blocking treatment means that your TSH is somehow ineffective at producing T3 and T4? Or something is possibly aberrant about the T3 and T4 making them ineffective?

[indysteel]

First don't ever feel odd about asking your doctor questions. Any good clinician will be receptive and should not take these questions personally. No one knows you better than you so they need to know what you are thinking in terms of treatment too. It's treating the whole person not just their body.

Am I understanding that the blocking treatment means that your TSH is somehow ineffective at producing T3 and T4? Or something is possibly aberrant about the T3 and T4 making them ineffective?

The blocking part of block and replace is the use of anti-thyroid meds to block the production of thyroid hormone. The drugs also help lower the antibodies that cause GD in the first place. In an effort to keep thyroid levels stable, some docs then add in a hormone replacement drug. In my case, such a drug would be used to keep me from going into a hypo state. Block and replace can also help patients from developing a resistance to the anti-thyroid meds. In the end, the approach often leads to more stability and, ultimately, to remission.

The standard wisdom that I've seen is that you use just enough anti-thyroid meds to keep Free T4 at or slightly above the mid-range. In my case, we're having a hard time finding a small enough dose to do that, which my necessitate the use of block and replace. This, of course, is my amateur opinion.

I do agree with you that a good clinician should be willing to answer my questions. My concern with my current doc is that she doesn't know the answers to my questions. Based on comments my doc has made in the past, it would appear that she's focused exclusively on my TSH levels. Once a patient is on meds, TSH is not a reliable number to look at. For a lot of GD patients, their TSH levels remain extremely low even after drug therapy. My understanding is that so long as their Free T4 and T3 levels are good, the therapy is working and they should feel relatively good. My original concern about my doc is that she doesn't seem to be looking at the appropriate lab values. How can she get me where I need to be if she doesn't even know what to look at? Ugh.

[WindingRoad]

I personally would start scheduling an appointment with another doctor. I've found if at all possible, I know it may be hard to find, that younger doctors are more willing to listen these days. I think it has to do with the ways medical schools have changed their approach to therapy and patient involvement. I hope you find some answers soon. It's not fun wondering what to do. Big hugs to you dear.

[indysteel]

Big hugs to you dear.

Thanks...and right back at you!

[indysteel]

Ugh; my doctor apparently doesn't want to try block and replace with me. Her reasoning--at least per her assistant--made no sense to me. She is of the mind that you only use B&R when levels are unstable. That's very inconsistent with what I'v read. You don't have to be a doctor to figure this out. If you can't keep a patient from going hyper, even on a very low dose of ATD, it makes sense to add in some synthroid (or the appropriate alternative).

I've sent a question about this to Elaine Moore's website, and I'll be curious as to what she says. In any event, I want a second opinion. :mad:

[redrhodie]

Yeah, I think at this point, you really need one. Listen to your gut, and find someone who is listening to you.

I sometimes watch a show on Discovery called "Mystery Diagnosis" and so often, the right doctor makes all the difference.

[indysteel]

I love that show. It makes me sad what some people endure though and how much still evades a ready diagnosis.

Elaine Moore (she's a Graves expert) answered my question and fundamentally questioned whether I need to be on meds at all. When I first got diagnosed, it was for subclinical/mild Graves. Because of my family history, my exercise intolerance, and my low blood pressure (which made a beta blocker a bad idea) we opted to medicate. Maybe that was a mistake. I'll try the dose reduction and a second opinion and see where I am.

And I need to calm down. I'll figure all this out. Getting worked up is not going to help.

[redrhodie]

Time for new shoes. ;)

[indysteel]

Time for new shoes. ;)

LOL. I do want a new pair of Keen Mary Janes. Can I eat some cake, too? :p

[Catrin]

LOL. I do want a new pair of Keen Mary Janes. Can I eat some cake, too? :p

Yes, you can have some cake. Take that, thyroid :)

[WindingRoad]

It's really odd because not even two hours ago I was looking at some cute Keen MJs in black. No joke :-)

One day at a time.

[jessmarimba]

A little late to the discussion, but I know here it's pretty easy to get a second opinion on things since referrals are not required in Colorado (as long as your insurance is ok with it. And when I called my insurance, they said it's up to the state). I'm eventually going to be paying a big chunk for my recent back appointment because they took all new x-rays, which I hadn't budgeted for (deductible just reset Feb 1) but they won't question the appointment itself. Balance billing is also illegal here.

[redrhodie]

Have you had any luck with this, Indy? Been wondering how you're feeling.

[indysteel]

Thanks for asking, Red. I have an appointment with my endo in a few weeks. It was originally at the end of this month, but she had to reshedule. Depending on how the appointments goes, I may decide to get a second opinion. She did agree to cut my dose of anti-thyroid meds. While I feel okay (I'm still mildly sluggish) I tend to think it's time to ween off of them. I'm not sure I should have ever been on them in the first place. I have a better understanding of that now.

[redrhodie]

Is the sluggishness the main symptom? Was that the original reason you thought there was something wrong? Did anything improve with the meds?

Maybe you should keep a journal to see if you can find patterns or triggers.

[indysteel]

Is the sluggishness the main symptom? Was that the original reason you thought there was something wrong? Did anything improve with the meds?

Maybe you should keep a journal to see if you can find patterns or triggers.

Long story short: My annual bloodwork last summer showed a suppressed TSH--which is consistent with hyperthyroidism. I had some additional tests done and was ultimately referred to an endocrinologist. My sister has Graves' Disease (an autoimmune issue that causes hyperthyroidism), so I wasn't surprised when the endo told me that I, too, had GD, albeit in a mild form. At that point, I didn't know a ton about what the various blood tests reveal about the severity of a particular case or what type of values warrant what type of treatment, so I wasn't able to ask the right questions.

At the time, my hyper symptoms were relatively minor but noticeable all the same. I was mostly concerned about an elevated heart rate and what the meant in terms of exercise. Often they treat mild or subclinical cases of Graves' with beta blockers rather than anti-thyroid meds. I remember my doc saying that she didn't want to use those with me because I typcially have low/low normal blood pressure. Instead, she put me on a relatively low dose of anti-thyroid meds. That seemed like a decent decision at the time but, in retrospect, I'm not so sure.

From the start, the meds oversuppressed my thyroid, so I went from mildly hyper to mildly hypo. I started reading up on what to look for in blood values and, in so doing, realized that my doc wasn't necessarily interpretting my blood work correctly or focusing on the right numbers. So, she's allowed me to persist in a hypo state far longer than she arguably should have. I've had to push her a couple different types to lower my dose of the anti-thyroid meds. I've complained to her assistant (because I rarely talk to my doc directly) about some hypo symptoms (heart palps, hives, constipation, hair loss, weight gain, dry eyes, fatigue and sluggishness) and was told "not every problem you have is necessarily thyroid related." It's been hard to find my voice with this doc's office.

That said, I think we are likely headed in the right direction in that I have been able to cut my meds and will likely stop taking them altogether at some point down the line. I'm just irritated that I've been the one to push for that. I've even had to push to get the right blood tests in the first place. We're just not on the same page. Ultimately, whatever errors in judgment my doc made (or didn't make) have not lead to grievous injury. It would just be nice to feel like she truly understands the disease and how to monitor it. Some of the conversations I've had, via her assistant, suggest to me that she perhaps doesn't fully understand it. Unfortunately, the vast majority of endos out there, only dabble in GD. They spend more type dealing with diabetes or non-immune related hypothyroidism.

[Catrin]

(((Indy))) I do hope you are feeling better soon. Can you find another Endo?

[indysteel]

(((Indy))) I do hope you are feeling better soon. Can you find another Endo?

Not yet. I have a name of somebody else, but his office is in Fishers and I'd really prefer somebody a little closer. Part of the challenge is finding endos in this city and, then, getting an appointment. It's not easy.

[redrhodie]

Well, it does seem like you're getting closer, at least. I've been spoiled by great doctors, so I notice when one isn't up to par. My oncologist is just okay. Her personality and bedside manner are good, but I felt like she's lacking some info. Of course, with the Internet as my medical training, I know everything. :rolleyes: Like when I asked about med interactions, she said there were none. I don't believe that's true.

[indysteel]

Well, it does seem like you're getting closer, at least. I've been spoiled by great doctors, so I notice when one isn't up to par. My oncologist is just okay. Her personality and bedside manner are good, but I felt like she's lacking some info. Of course, with the Internet as my medical training, I know everything. :rolleyes: Like when I asked about med interactions, she said there were none. I don't believe that's true.

As a lawyer, I appreciate how frustrating it can sometimes be when non-lawyers feel expert in something just by reading something on the internet. That's not to say you have to have a law degree to understand a legal issue, but often the issue is more nuanced than it would first appear.

So, I have tried to tread lightly when it comes to my doctor and her approach. I'm obviously not a medical expert, and I really only take issue with a couple glaring mistakes. Mostly, my issue is with her communication or lack thereof. I've felt rushed when discussing things with her or forced to speak only to her assistant. I know my case is minor and for that I'm grateful, but it doesn't mean that I want to be brushed aside so easily.

In any event, I'm FAR less upset about this than I was a few weeks ago, so that's good. I was given a bit of extra perception today in reading a thread on a different cycling forum (RBR) about a man with a toddler who had delayed development and behavioral issues. Their pediatrician has insinuated that the parents themselve are at fault. Well, the child recently fell and was referred to a pediatric plastic surgeon. In looking at his x-rays, that doctor immediately diagnosed the real issues--something to do with a misformed cranium. Further testing confirmed the diagnosis and the child's prognosis is good with the right medical intervention. The father is struggling with what to think and feel about his original pediatrician--with good reason.

[GLC1968]

Indy - I'm glad that you may be getting to the bottom of this! I will agree that having the right doctor is CRITICAL. And it's not just for their knowledge, but for how they interact with you. Everyone is individual and not all personalities match.

I had a doc in FL (OB-GYN) who I liked a lot. He also was my mom's doc. In fact, I tutored his daughter in algebra. We had a good relationship. The problem was that when I developed uterine fibroids causing massive bleeding spells, he had no answer. He tried to control it with hormones - including depo provera which is exactly the LAST thing he should have attempted. In fact, at one point, he suggested that I'd be 'cured' if I just got pregnant....and he suggested that both to myself and to my mother (which was a huge red flag for me!). He was guessing and it pissed me off.

When I moved to NC and had another massive (and incredibly embarrassing) bleeding spell, I got an appointment with the first doc available at the clinic a friend recommended. He immediately asked if I'd had a recent ultrasound. When I said no, he was shocked. One look and sure enough - obvious fibroid. Two surgeries later and the problem was completely gone.

My mom still sees that first doc and he appears to have zero clue how it should have been him who discovered such an easy diagnoses.

And I also agree with whomever said that younger docs seem more receptive to my suggestions/questions. In fact, I make a point of researching my doctor's age or degree dates before making appointments because I find it makes such a huge difference.

[indysteel]

GLC,

You are one of several women I know who have had the same horrible experience with doctors who mistreated/misdiagnosed fibroids. I don't get why doctors are so quick to write something like heavy, irregular and/or painful periods as basically normal. They're not normal.

One of my friends went through an insurance nightmare because she changed insurance companies after she's first told her OB about her heavy periods. Her doc wrote it off as perimenopause. So, when she switched insurers, she didn't reveal it as a preexisting condition because it hadn't been diagnosed as such. Well, it turned out she had a massive fibroid that required immediate surgery. The insurer refused coverage, and her appeal was denied.

[shootingstar]

I think I found a family doctor that I like...whew. That was just yesterday. I am relieved. In a city where there is demand because the population is growing fast.

I try to provide to useful info. that the doctor asks. It doesn't help any doctor to be too vague and careless in one's own memory of symptoms. A doctor cannot read your mind.

Being at the doctor's appointment, it is important that a lay person, remains alert and sharp to think of and ask questions as the doctor provides information. You are paying for this professional...through whatever health care insurance system you use. That's how I treat the whole visit....glean as much information as I can out of the doctor that's relevant to me. It is precious valuable time.

Be sharp, ask and think (rather quickly) of the right questions right there on the spot with whatever information you may have learned yourself prior to the appointment. This way of thinking has helped me alot in my doctor interactions. Don't allow yourself to be intimidated by any doctor specialist...but you must think of good questions...on the fly within that 15-25 min. visit.

Then I might go home and phone up a sister who is a doctor...and ask for a 2nd casual opinion. :rolleyes: I just want to reaction out of another professional on the recommended treatment. I usually do get abit more information from sis.

But even with all that, some doctors just aren't expert/knowledgeable in certain areas.

[redrhodie]

Good points, shootingstar. For my major doctor visit, I actually brought a friend, and she took notes. She and I had also written down a bunch of questions, because I'm notorious for forgetting the things I want to ask. Even with two of us listening, there were some things we missed. It would have been overwhelming alone.

[jyyanks]

Indy - I'm very sorry for what you're going though but I'm glad it seems like you're headed down the right path.

I read your story above about the guy who's son was misdiagnosed and am going through something similar. My 6 year old son (now 7) was diagnosed with Benign Rollandic Epilepsy in July. He was put on medication which worked at first but then, he started having more seizures. His neurologist increased his dosage and he started having cognitive issues (forgetting his uncle's name, not remembering what "sneakers" are, not able to pronounce words that he never had trouble with, performing poorly in school etc). When I brought this up to the Dr, she simply said that it was the medicine and changed his medication. Unfortunately the problems continued and got worst! To be honest, I was really uneasy as she did not really want to address my concerns and seemed to be blaming everything on the meds.

Long story short, I went to a new neurologist yesterday and she was surprised that my old doctor didn't perform certain tests to completely rule out other things. She suspects that the diagnosis is not 100% correct. This new doctor is the head of the department in a major medical facility and has done a lot of clinical research on epilepsy as it relates to behavioral and cognitive issues. We are scheduled for more intensive testing in the next couple of weeks and although I'm worried, I am relieved that someone wants to get to the bottom of things and find the right treatment for my son.

It just goes to show that you have to trust your gut when it comes to your health and keep looking until you find a doctor who listens to your concerns and who you trust. Getting a second opinion is worth it, and can be life saving in certain instances. Even if your original doctor is spot on, at least you get the peace of mind and reassurance when their diagnosis and treatment is re-affirmed by another expert in the field.

[indysteel]

I am sorry to read of your situation. How scary. I sure hope you get answers soon. Hugs to you and your son.

[shootingstar]

You know, at times, listening to the doctor is hard enough....my doctor-sister was trying to explain to my mother that really there is no cure, not much prolonging of life (beyond 18 months to 2-3 yrs.) for my father with cancer.

[WindingRoad]

Indy you doing OK?

[indysteel]

More or less. I've been moody the last couple of weeks, which may have absolutely nothing to do with my thyroid ad everything to do with my tendency to stress out over everything. I've also been really tired, too (and no, I'm not pregnant!). In any event, I have to get new bloodwork this week in anticipation of an endo appointment on the 16th. I'm eager to see where I am.

Thanks for asking, WR. I really appreciate it. :)

[Catrin]

Crossing my fingers for you IndySteel!

[WindingRoad]

I struggle with stress freaking me out and making me moody too. I feel for you on that, no fun. Good to know you are not pregnant ;) Keep us posted on how things turn out.

Try to take it one day at a time, for sanity's sake :)

[indysteel]

I struggle with stress freaking me out and making me moody too. I feel for you on that, no fun. Good to know you are not pregnant ;) Keep us posted on how things turn out.

Try to take it one day at a time, for sanity's sake :)

I'd be just fine if one of my cats would consistently stay healthy. Poor Henry just goes from one thing to another. Last week, it was an ever-worsening case of chin acne (yes, cats actually get blackheads) that he simply will not leave alone and a limp in one of his hind legs. He's going to be death of me. I worry--sometimes excessively--over every illness and injury, especially when we're scheduled to be out of town.

But you're right; I need to take it a day at a time. My vet was very helpful in reminding me, too, that sometimes there is only so much we can do for our pets. As fatalistic as that sounds, it's good for me to be reminded of it.

[indysteel]

Well, I went off my anti-thyroid medicine about three weeks ago--with my doc's permission--and so far, I seem okay. Every time I've reduced my meds, I've had a short period of adjustment where I felt edgy and a little racy. I've had some of that this go around, but it seems to be passing. I haven't had trouble sleeping for the most part, and my resting heart rate has been normal (for me). Yesterday, I saw it as low as 49, so that's good. I get bloodwork next week, and have another follow up visit with her in July. If my numbers remain in the normal range, then there's hope that I'm in remission. Fingers crossed.

[Catrin]

....If my numbers remain in the normal range, then there's hope that I'm in remission. Fingers crossed.

Fingers, toes, and hair crossed for you. hmmm, don't know how to cross my hair but you get the idea :)

[indysteel]

Fingers, toes, and hair crossed for you. hmmm, don't know how to cross my hair but you get the idea :)

Thanks!

[OakLeaf]

Good luck!

[redrhodie]

I really hope this works! It sounds great so far.

[Roadtrip]

Sending positive wishes your way Indy.

Shannon

[WindingRoad]

Hi Indy, glad to hear you are feeling ok. Keep us posted and take good care. :)

[indysteel]

Mother of God, this just gets more and more confusing. I stopped all anti-thyroid meds in April. Last week, I had my first bloodwork done since then. I expected my TSH to be lower and hopefully well within the range of normal. And I define normal as being between 0.3 to 3.0.

Nope. It's at 4.47, which suggests that it's even more suppressed, i.e., hypoactive, from when I was on actually on the meds that were supposed to be suppressing it. Uh, what? It's going in the wrong direction. Plus, the message my doc's office left telling me to just recheck it in another 7-8 weeks, which leads me to believe that she saw nothing weird about this. So, I guess I'm back to feeling like I need a new doc and some logical explanation as to why someone who was initially diagnosed with Grave's Disease, albeit a mild form of it, now has a thyroid that's underactive even after going off meds.

I'm so frustrated. :(

[Catrin]

Yes, it is frustrating! Would it be difficult to get a second opinion? I don't know what medication they had you on, but I understand that some thyroid medication can suppress the thyroid for longer than expected. I am no expert, and there may be nothing to that but perhaps your body needs more time to work this out?

[indysteel]

Yes, it is frustrating! Would it be difficult to get a second opinion? I don't know what medication they had you on, but I understand that some thyroid medication can suppress the thyroid for longer than expected. I am no expert, and there may be nothing to that but perhaps your body needs more time to work this out?

There are really only two antithyroid meds used in the States, and I was on the more common of the two. It should have left my system entirely weeks ago. And I was on a tiny dose to begin with. The only thing that gives me comfort is that my Total T4 and Free T4 are within normal ranges. But if my TSH continues to trend up, then I'll need to address it. I just wish I understood what my autoimmune system was up to.

[Catrin]

There are really only two antithyroid meds used in the States, and I was on the more common of the two. It should have left my system entirely weeks ago. And I was on a tiny dose to begin with. The only thing that gives me comfort is that my Total T4 and Free T4 are within normal ranges. But if my TSH continues to trend up, then I'll need to address it. I just wish I understood what my autoimmune system was up to.

I hear you...autoimmune system stuff can be so frustrating. It took me a long time to understand that my Graves Disease was a symptom of a deeper problem, not the actual problem. I don't remember what I was taking, I tend to remember the massive amount of beta blockers they had me on rather than the actual thyroid medication...but all of this was in the 80s's. My situation was quite different however, thankfully for you. It is good to hear your other numbers are normal and may your next test be in the normal range.

[OakLeaf]

Oh boy. That stinks. Subjectively, do you feel hypothyroid, consistent with the test results? Or is it possible something's just off with the lab?

[Crankin]

Oy, I have had the same experience with my new, supposedly "wellness friendly" internist, with my lipid profile. I called last week to get the order for a new test; she said wait 6-8 wks. I called the office, left a message and she calls back. Hmm, I get suspicious when the doctor calls me back, instead of the office staff; I know from my friend she's having trouble building up her practice.
She says, "And why do you want a lipid profile done?" I respond, "Ah, remember, my numbers, especially my LDL were way up. This is a change. You told me to retest in 6-8 wks." She says, "I have 6 months written here." I respond, "No, you said 6-8 wks." She replies, "Well, I guess I wrote the wrong thing."
She faxed the order to the lab, but I am waiting until Tuesday to go, as I have other blood work that needs to be done for my osteoporosis meds.
I am really frustrated. I feel like *I* am telling the doctor what to do. First, I have a doctor that treats me like an old lady and now I have one that doesn't know what to do with someone who isn't a dumb sh*t and can advocate for herself. She has rave reviews, but from people who need "lifestyle counseling."
I don't want to deal with a doctor who is not affiliated with my local hospital, or I have to travel far for, for my pcp. Something is just not right here, but I guess I will stick it out for a year and then re-assess.

[indysteel]

Oh boy. That stinks. Subjectively, do you feel hypothyroid, consistent with the test results? Or is it possible something's just off with the lab?

Generally speaking, I'd say that I don't feel hypo. The power of suggestion when it comes to my thyroid has been strong, and sometimes I've found it challenging to separate my lab numbers from how I'm actually feeling. Even if I am technically hypo right now, it's arguably subclinical (because my Free T4 is still within a normal range). Right now, it makes sense to just keep a check on how I'm feeling and see what my next round of labs reveal.

I do still sense some stuff going on with my eyes and Thyroid Eye Disease (TED) remains a major concern of mine. I'd like to get another antibody test, but it's an uphill battle getting this doc to test for anything other than FT4 and TSH.

The bottom line is that there's a degree of trust lacking between us, and it's arguably time to just find somebody new--as much of a PITA as that might be. I have an annual visit with my internist next week. I might wait to see if she has any suggestions. Of course, she didn't think anything was wrong with me last summer and ordered two rather expensive tests rather than run a basic, but complete, blood profile. So I don't know how that's going to go. :(

[WindingRoad]

I would get a new doctor at this point. I think you are wasting your time with this person because you have lost trust in their judgement. Even if this doc was right I don't think you would be comfortable with it. Just my two cents, I just know how I would feel. Best of luck to you Indy, I hope things start get better soon.

[indysteel]

Saw my endo again today. The good news is that it appears my mild case of Graves is in remission (or was never Graves to begin with; I have to wonder). The bad news is that my bloodwork continues to show a mildly elevated TSH. Because I've noted some increased fatigue and mild depression of late, she went ahead an prescribed a small does of synthroid. We'll see what that does for me. Prior to my Graves diagnosis, my TSH was also mildly elevated for a couple of years--but no doc had bothered to tell me that. Because of this yo-yoing, I have to wonder if I have Hashi's, not Graves. But I'm to the point that I'm tired of trying to figure out the right label--as I'm not sure what difference it really makes; I just want to get my labs within a normal range.

I'd add that I had an opthamalogist appointment a couple of weeks ago and my eyes show no serioud sign of Graves eye disease. That's a big relief, too.

[Crankin]

Well, at least one thing solved, Indy.
My weird, new PCP closed her practice. I knew there was something wrong when the doctor called you on her personal cell phone. She had no patients! I now am doctor-less and I don't want to go back to my old one.

[indysteel]

Well, at least one thing solved, Indy.
My weird, new PCP closed her practice. I knew there was something wrong when the doctor called you on her personal cell phone. She had no patients! I now am doctor-less and I don't want to go back to my old one.

Ugh; that sucks. But that's also kind of weird. Most PCPs are booked solid around here. Good luck finding a new doctor. It's such a pain.

[Crankin]

Our local hospital has hired a bunch of new docs or at least is helping a bunch get started with privileges and publicity for their practices. Also, the community hospitals here are making an agressive effort to lure people away from the big guys in Boston. Yes, there it's very hard to find a doctor, but I don't need to go to Brigham and Women's for a PCP.
I think it's because her office was in a weird location.

[Catrin]

Yikes Crankin, hope you find another PCP you like in your area. It is hard to find a PCP that gets people who like to exercise - at least I've had that problem.

Indy - good news on the progress, and hopefully things will stay in remission...whatever it is.

[indysteel]

So, I guess I have to join the group of Synthroid users who struggle to find a decent time to take their daily dose of it. I am not a first-thing-in-the-morning breakfast eater, but I do have a cup of coffee within 15 minutes or so of waking up. Make that half-a-cup. While I could change my morning routine, I'm just one of those poeple who needs about fifteen minutes of alone time with my coffee before I'm fit company and before I'm ready to embark on my day. I get up at 5:45 and spend 15 mintues feeding the cats and taking care of a few minor details for the day (like getting my work clothes ready). Then I sit on my couch with my coffee and iPhone in hand and a cat in my lap. I generally read TE and a few other forums I frequent. DH knows to leave me alone as I do this. Then I shower and get ready for work. I usually spend five more minutes with my coffee and the cats before heading out the door.

I'd take it at night, but we often don't eat until late and/or I eat a snack not long before bedtime. That's not likely to change either. I get up in the middle of the night every night--usually around 3 a.m. or so. While I'm generally pretty blurry-eyed, I'm arguably awake enough to take a pill. I guess I'll try that and see how it goes. I also have to rearrange when I take a couple other pills (a BCP with Iron in it and Allegra).

[snapdragen]

Indy, my routine was similar when I was working, minus the cats. I would take my Synthroid after my shower. I didn't eat breakfast until I got to work, which was about 45 minutes later.

[indysteel]

Indy, my routine was similar when I was working, minus the cats. I would take my Synthroid after my shower. I didn't eat breakfast until I got to work, which was about 45 minutes later.

I'm fine with the not eating until later part. It's the coffee that I can't/don't want to wait on. Do you drink coffee and, if so, did you wait until well after you took your synthroid before drinking it?

[Catrin]

I'm fine with the not eating until later part. It's the coffee that I can't/don't want to wait on. Do you drink coffee and, if so, did you wait until well after you took your synthroid before drinking it?

I've not noticed a problem with way where coffee is concerned. Generally I don't get to my coffee until I've been up around 30 minutes, and I take my pill as soon as I wake up. I think that real food is more of an issue - and I eat less than an hour after taking my pill. This hasn't caused an absorption problem, my levels are pretty steady.

[indysteel]

I've not noticed a problem with way where coffee is concerned. Generally I don't get to my coffee until I've been up around 30 minutes, and I take my pill as soon as I wake up. I think that real food is more of an issue - and I eat less than an hour after taking my pill. This hasn't caused an absorption problem, my levels are pretty steady.

Actually, I've read some literature that suggests that caffeine can interfere significantly with absorption, which is why I'm concerned.

[sookiesue]

I've been taking Armour thyroid for about 12 years now, and it was only in the last 2 years that I even knew that you were supposed to take it on an empty stomach! I have stayed on the same dose for several years, except when I was pregnant with my second child and had to increase my dose slightly during the pregnancy. I take it first thing in the morning, and generally have my coffee (2 cups, half-decaf, with milk) within 30 minutes of taking it, then breakfast another 15-30 minutes later, and haven't had any issues from it.

I tried Synthroid but it made me quite sick to my stomach, no matter when I took it. Armour is an animal (pig) product, which is why I tried synthroid (I avoid animal products when I can). Not sure if it would be appropriate for your needs, but you might ask your doc if Armour would work better for you and your schedule.

[Catrin]

Actually, I've read some literature that suggests that caffeine can interfere significantly with absorption, which is why I'm concerned.

Interesting, I hadn't heard that. I've been doing it this way for years and have had no apparent problem but perhaps I've just been lucky. Like Sookiesue I have breakfast within an hour of taking my daily dose. My levels are always in the same range when tested.

I won't take the Synthroid brand, I've had more problems with that than Levothyroxine. It shouldn't matter, but certainly did at one time and now I won't risk trying that brand again. Since I don't have a thyroid at all, when things get out of balance it can take months to get it back again - so I don't mess with what works for me ;) Levothyroxine is one of the older "generics", I've been taking it since for a very long time. I tried Synthroid about 10 years ago and it took close to a year to get things right again. For some it works fine, but not for me. I've no idea what, if anything, differs between Synthroid and Levothyroxine, and it may be that something else was going on at the time that caused that problem outside of changing the brand of my thyroid replacement.

[indysteel]

Isn't Synthroid just a brand name for Levothyroxine? I'm other words, seen 't they one and the same? I haven't looked at my pill container, but given how insurance works, they probably just gave me the generic formulation.

[indysteel]

Thanks for the Armour suggestion. I'll see how I feel on Synthroid first. I've never discussed the concept of conversion of T4 to T3 with my doc and it sounds like Armour contains both, making it ideal for someone who has a conversion problem or who no longer has a thyroid gland. Synthroid only contains T4, which the body must then convert to T3. I guess we'll see where my numbers are in six weeks and how I feel. My symptoms are relatively minor as is so hopefully I just a little boost.

[Catrin]

Isn't Synthroid just a brand name for Levothyroxine? I'm other words, seen 't they one and the same? I haven't looked at my pill container, but given how insurance works, they probably just gave me the generic formulation.

I've always been advised by pharmacists to not change between the different "brands" of synthetic thyroid replacement very often. There are differences in the concentration between the different brands and some people do seem to respond a bit differently between the different "brands". About.com has a little blurb with a passing reference about it here (http://drugs.about.com/od/faqslibra2/f/levoxyl_generic.htm). This site (http://www.medicinenet.com/levothyroxine-oral/article.htm) also advises against changing brands without consultation.

All of that being said, I don't have a thyroid at all so my body may be more sensitive to differences in concentration. The price is quite close between the two, something like $1 or so.

[e3rdpower]

I get up in the middle of the night every night--usually around 3 a.m. or so. While I'm generally pretty blurry-eyed, I'm arguably awake enough to take a pill. I guess I'll try that and see how it goes. I also have to rearrange when I take a couple other pills (a BCP with Iron in it and Allegra).

That's what I do, I keep my Synthroid at my bedside with a glass of water and take it when I get up to pee.

I take a combination of Synthroid and Cytomel. I do not convert T4 to T3. It's a constant balancing act for me for my dosages.

[indysteel]

Thank you for that link, Cartrin. Now I get it. I checked my script and it is for Synthroid.

[snapdragen]

I'm fine with the not eating until later part. It's the coffee that I can't/don't want to wait on. Do you drink coffee and, if so, did you wait until well after you took your synthroid before drinking it?

I don't wait -- coffee and newspaper, shower, pills. I didn't have breakfast/more coffee untill I got to work. Now I wait 30 - 45 minutes, then have breakfast.