[Ski]

#1065704

Well, I can give a little input ~ ultimately, your treatment choice is YOURS, not your doctor’s, that’s the first thing. We were told at October’s conference that there is no reason to avoid longterm treatment with ATDs, if it’s working for you. Some doctors don’t "like" doing it, but they’re not the patient, you are. As long as you are having no severe complications (liver damage or lowered white blood cell count), there is no good science to discourage long term ATD use. The "old school" was treatment as follows: ATDs for 1-2 years, attempt remission, if unsuccessful, surgery or RAI. So, doctors who have not had updated information do continue to treat Graves’ patients with this strategy, and they believe they’re doing the right thing. I think when a doctor, looking at a patient that’s feeling overall pretty well, says "we must change everything about what you are doing," well, that doctor is perhaps a little on the bossy side, and not necessarily what we would call a "team member."

Your concern of treating to lab values is VERY important. As you’ve seen us write a million times (or more, probably), it is important to find OUR normal POINT, not just get our labs into the "green." If you continue to have symptoms, an attempt should be made to adjust meds slightly in order to see if that provides relief. It’s true, not every symptom IS thyroid-related, but since that’s what you’re managing, no harm in checking to see if slight adjustments help. It’s going to be tough for you to have a good relationship with someone who is resistant to that. I think dismissing your concerns by saying you may need treatment for anxiety is pretty flippant.

I hate to say it so soon, but it may be that you still need to find another endocrinologist. I know they’re hard to come by, even harder to find one who is taking on new patients ~ and in the end, perhaps your old endocrinologist, bad bedside manner and all, is the best one to treat YOU. It’s very individual, but it is SO worth the search when you find someone you can truly work WITH.

[BMSol]

#1018560

First I want to thank NGDF for having this board available. I have written on it numerous times and have always found sound advice and encouragement and I am very thankful for that.
So yet again I am reaching out looking for any opinions or helpful experiences. Quick background-I was dx with Grave’s in 2005. My levels were finally regulated about 2 years into treatment taking 10 mg methimazole daily. I was dissatified with my previous Endo. He had no beside manner and was very unsympathatic to my symptoms and the ups and downs I had been experiencing. I stuck with him for 5 years and decided to change Endo’s and get a new opinion. I saw my new Endo today and she had a brand new treatment plan for me. She said 5 years is the longest she would ever let any of her patients be on methimazole and it is not a long term treatment. She took me off the medication today. She said there is no weening nothing-just stop taking it. I’m going back in a month to see where my levels are and see if I’m in remission. If I’m not we will check in another 3 months and if my levels are off she wants to remove my thyroid, she says I’ll go hypothyroid and we will regulate me from there. She stated this is much safer… especially if I want to have any more children. I guess this is all so new and my old Endo never even mentioned doing this so I’m just taken back a little and leary. I think it’s good that we are checking to see if I am in remission but wow if I’m not.. the next few months are not going to be fun and I’m really not looking forward to going hyperthryoid again if that happens. One thing I noted was that she was very interested in treating the lab values. I explained to her that I still feel that sometimes I experience thyroid related symptoms even though I am technically ‘normal’ and she stated that she believes I have some anxiety issues and it is hard to distinguish between the two. She feels if I am in remission then I may need to get treamtent for anxiety. That’s fine I just hope she is not just treating the numbers. (which I have read that most endocrinologist just tend to look a labs and not what a person is going through.) This is where I get mixed opinions and where my confusions lies-some people say just bc you are in ‘normal’ lab range you can still experience symptoms (I have wrote on this before) and I truly think I still have classic Graves symptoms even though I am ‘normal’ but my new Dr. says this is not the case. I am open to my new Dr. and her actions -just wanting to know if anyone else has been just taken off meds so quick like this or experienced the same type of treatment plan. I really don’t want to remove my thyroid-guess I have just heard too many bad stories. I’m very fearful to go hyperthyroid again too but I understand it’s necessary. Any thoughts or advice would be very appreciated! Thanks in advance.
B

[ely2009]

#1065705

I have just started weaning from methimazole…had been on 5mg and am now down to 2.5 mg/daily. I expressed my concern about not wanting to become hyper again – I do NOT want to go back there ” title=”Smile” /> She said, and it seems logical, that I know what "it" (being hyper) feels like, and if I begin feeling that way, then we’ll check bloods. It’s not like before my initial diagnosis when I didn’t know what was wrong and felt worse and worse before it was treated. And she’s right – I will be on the lookout (although hopefully not paranoid) about my symptoms.

During the time it took to diagnose and begin treating my Graves, my GP suggested zoloft for my anxiety. I was VERY hesitant to take meds, but I was also SO TIRED of feeling like crap all of the time. I decided to try a low dose. So a year later, I’m in the "normal" zone and am being weaned. My anxiety has improved – don’t know if it’s the zoloft, my normal levels, or a combo. But I do know that I feel like myself again. My plan is to see how the methimazole weaning goes, and then tackle the zoloft weaning next.

Before my official diagnosis they tested my TSH twice. BOTH times it fell within the "normal range." But I was feeling anything but normal. I had to fight to have it checked again and the 3rd time, it was just slightly below normal – so I got my referral to the endo. I have a feeling that MY normal is at the higher end of the normal range because I certainly had all of the hyper symptoms even though I was "normal."

I switched endos during the year last year and am happy I did. I found that it’s important to have one who will listen to you. My first one would say "Oh, you shouldn’t be feeling that way (tremoring, sweating, etc.)….you’re levels aren’t THAT low" But I was feeling that way!

Good luck with all of your decisions.

[bluewave]

#1065706

I think you shouldn’t hesitate to see another endo.

I was recently diagnosed w/ GD after a year of being very sick. I saw one endo back in January and switched to another a few wks ago. Their approaches were very different, the new dr being more thorough and very responsive. I’m glad I switched.
The new dr doesn’t seem quite as friendly as the first, but he is better. He runs all the relevant tests, is up-to-date on current practices, and is very responsive to my complaints — will have me come in quickly for labs if not feeling well, which has resulted in him increasing me from 20mg/day of methimazole to 40 over just 3 wks time. The first dr just had me schedule a second appt 2 months out and he never ordered FT3 labs; so, I decided to switch.

Being hyper feels horrible, so I wouldn’t think twice about making an appt. w/ another endo if this second one’s approach doesn’t seem right to you. Also, my new dr said in the past they’d put one on ATDs for a year or so, and if no remission, they’d move to RAI or TT, but he said these days, they will keep you on ATDs longer, if a low dose is working; what that "longer" is, I don’t know — I don’t recall if he gave a number.

Good luck to you.

[genuinruby]

#1065707

In my journey I have met three types of Endocrinologists. The first one, immediatley wanted to radiate my thyroid, and withheld antityroid meds until I begged for relief. The second one, looked at me and said "your thyroid is not the cause of all of your problems" and now the third and hopefully final…wants to treat my symptoms and not my numbers. If I have learned nothing else these past 3 years, at least I have learned to stand up for what I feel is best for me. I have discovered that there is no way the doctors have time to review our charts completely …and they are very overbooked patient -wise. The clinic I go to has over fourteen thousand patients in their database. I have to be pro-active, and know all the how’s and why’s so I can understand what the doctor is reccommending, and make sure that it is what I want too.

[snelsen]

#1065708

I have read your post, all the others. I guess I suggest that you consider making a list of questions, most of which you have in your post, and make another appointment with the 2nd endo. It is very very difficult to establish a good relationship after one visit. It is a lot of work to change docs, you just did it. This may work, it may not. But it is tough to have this relationship after one visit, and it seems you thought about this a lot after you went home, which makes perfect sense. Before throwing the whole thing away, it could be a good idea for you to see her again. SHE doesn’t know all the thoughts you have had after one visit with her, does she?
I am not defending the doc, but relationships do require more than one shot. She had never seen you before. She did say new things. After you make your list of questions, encompassing your concerns, see her again. I suggest making the appointment now. It ALWAYS takes a long time to get an appt, but now that you are an established patient, you will find it easier.

Just of interested, I did not become hyper at all after ATD’s most of the time. But I did not want to "live" on them for the rest of my life. Again, my choice. Maybe the facilitators know much more about long term ATD’s (long term meaning decades, or lifetime use) I am not sure there is the data to know that one way or the other. Maybe there ARE longitudinal studies which someone may have done a retrospective look. I doubt it though, for there have not be a population of folks who have been on ATD for decades and decades. I wanted a subtotal thyroidectomy after the ATD’s. then for 30 years I was euthyroid by the numbers and by how I felt. Then I became a little hypo, began Synthroid.

This has been addressed before, but sometimes people feel better in a hyper state. This is pretty much about my story. and experience. And I do think you can be a "little bit" hyper. I know someone has said that this is not possible. But I loved it. Lots of energy, generally felt good. Normal everything else, no other symptoms. But the impact on cardiac and other stuff can be a risk factor over the long run.
We are currently decreasing my synthroid, and I don’t like it much, for I am more tired, and COLD! But I am glad I am going it, cause it is better not to have my body running in high gear all the time. My pulse is not fast at all.

[Ski]

#1065709

Long term ATD use is actually pretty common in the rest of the world, so there have been effective studies. The only trouble is if the patient began to have some of the rare, dangerous side effects (liver damage or lowered white blood cell count), but the fact is that most of the time, those side effects show up at the beginning of the period of use, not in the middle with an established patient, so low dose, long term ATDs have a low risk overall. There is an element of chemicals "building up" in the liver, so I believe liver enzymes should be checked periodically during long term ATD use (annually? don’t quote me), but again, a very low dose means lower risk of that.

One thing to remember is that even if you’ve been on ATDs long term and it went well, if you stop to attempt remission and then start again, you are at the *same risk* as anyone else for those rare, dangerous side effects, so you need to be very vigilant when you first restart ATD use ~ I think they said those most often show up in the first few months.

[BMSol]

#1065710

Thank you all for your advice and sharing your experiences. I did go into the appointment with a very specific list of questions and symptoms I had been documenting. The new Endo was very quick to dismiss my inability to sleep or my shortness of breath, high heart rate, dropping things and irritability and basically told me if my lab values came back normal we cannot associate ANY of these symptoms I’m feeling to my Graves disease (even though they are the exact same symptoms that lead me to the diagnosis of Graves). I have taken everyone’s opinions into consideration and they have really helped me in making my decision so thank you! I do feel this Endo had her own agenda. I feel that patient care and treatment plans, especially when dealing with thyroid issues, needs to be highly individualized. I don’t think she was listening to what I was saying or how I was feeling, she was only concerned about what the lab values were telling her. She took me off my Methimazole based on lab work from 6 months ago bc it was in normal range back then instead of waiting to get the results back and moving forward from there. Since it has been 5 years, I am willing to go off my medicine and see if I’m in remission. I think it is worth the risk to see. But if I am not in remission, and I have been controlled by a low dose of ATDs, I just don’t see the negative evidence that supports me doing something as drastic as removal or RAI. I’m not even sure why she would suggest it so quickly after meeting me one time and not asking me how I felt about it. She literally told me that was our game plan and that’s that. To me, if my labs are in normal range and controlled by ATDs but I’m just experiencing occasional symptoms and up’s and downs, why not continue with what is working and just maybe tweak my dose by 5 mg or supplement my dose with a prescription sleep aid or an anti-depressant. I’m certainly not looking to be pumped full of pills but I’m sure we might be able to get these symptoms controlled, my lab values in range and quite easily without the RAI or removal. So if I am not in remission and I go back and that is still her game plan after I voice my concerns I will once again be looking for another endocrinologist. After reading everyone’s posts, I am learning to trust myself and what I am feeling. I need to remember that I am not crazy or making this stuff up. I have been dealing with this for 5 years you would think by now I would trust myself but having a professional look at you and tell you every symptom you thought you were feeling related to your disease is not from your disease at all is quite disheartening. Especially since they are the same symptoms I feel when I am hyperthyroid. It’s easy to just start thinking you’re nuts and it’s all in your head. But it’s not-I’m not a hypochondriac or out searching for attention I just want to feel normal and like myself. Thanks again for all your comments and feedback and it truly does help greatly to get input from others who know exactly how I am feeling!
Have a great day!
B

[snelsen]

#1065711

Well, after reading your latest email, it does sound like the new endo may not be the right person. If you had your list, and described your symptoms, and there was no back and forth discussion, maybe this is a poor fit. I have found, though, that it is THIS WEBSITE that has really helped me with my Graves and my TED. One thing about this darn disease is that it is so emotionally draining, at least it has been for me. For you, I think you re doing a good job of listening to your body. I guess this is the time to throw away the "should and oughts." If the thought of returning to her a second time, and it drains your energy to think about going back to her, follow your intuition. If you think it is worth one more appt to see how it goes, give it a whirl. It might be reassuring to begin to explore a third endo, asking around (I know it is not always that easy) for one who actually sees a lot of Graves pts. Do you live in a big enough area to have this choice? I hope so.
I think your symptoms are significant, and you deserve to have an endo who has knowledge, gives a crap, and does not have a cookbook agenda. Cookbook patients we are NOT!!

I have been going through hell with this disease. I know exactly how you feel. I did change endos, and the 2nd one is turning out to be good, but it took a couple visits for him to warm up to me, and my interest in having all notes and labs. I have my freakoid interests, and one of them is wanting all records and labs in my file. He is fine with that, and I am able to go online and read everything, so that fills my need for instant gratification with labs and his dictated notes. I ALMOST did not go back to him, cause in my case, he wanted to decrease my Synthroid, and I really did not want to do it. I liked the way I was!

I am so glad you are on this site, do write as things move forward for you.
shirley

[Author]

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