[Carito71]

#1060000

Hello everyone,

I haven’t visited the forum in several months.

I want to share with everyone what has been going on lately because I think that it will give those who have started on the Graves disease journey some hope.

It has been a year since I was diagnosed with Graves. As some of you might remember, I had to be taken to the ER with tachycardia. I was extremely sick and my TSH was almost 0. My fT3 and ft4 were elevated. I was put on Methimazole at 30mg/day. In November of last year my levels had normalized and I was down to 2.5mg/day. This is all good news and hopefully it gives hope to those who have just started.

Having said the above, I’m looking for the experts’ advice. I have been on Methimazole 2.5mg/day since Nov. My #s have gotten better and better. I just had labs done and my #s are better than ever, including my liver function and WBC. Things have been so good that my Endo has been seeing me every 3 months. My #s are all normal and I feel well.

The problem is that now that it has been a year and since I’m doing so well, my Endo wants to take me off the Methimazole. I have convinced him to keep me on it for another 3 months. I’m very upset about the whole thing. He can’t explain to me what is the danger on staying on it. I don’t think I should come off of it because if the Methimazole was no longer needed, I would be hypothyroid and not euthyroid. I don’t know what to do. I don’t know what to tell my Endo anymore. At the beginning he wanted so much to do surgery or RAI but I fought against it and had him keep me on the Methimazole even though at first my liver enzymes were elevated. They were elevated but it wasn’t because of the Rx. It was because of the hyperthyroidism and the #s started to decrease on the Rx but he persisted that the Rx could be the problem. Anyway, as he started to see the #s go down, he decided to keep me on it. I now feel that I’m having to fight him again. I’m very frustrated. I believe that if it isn’t broke that we shouldn’t fix it. We have found the right dose and it is a small dose. I have asked him to tell me what the danger is of staying on it but he doesn’t say. I asked for a TSI but he doesn’t want to get one. What is going on? Are all Endos like this? Is it an ego thing? What is the danger?

Please advice. Some of you have been on Methimazole for years. He wants to discontinue it in 3 months. I told him that I was afraid of discontinuing it and he told me that he wasn’t. I didn’t say anything but I wanted to tell him that of course he is not afraid, he is not the one who has suffered with the disease. I was so sick at the beginning that I don’t want to go through that again. I can’t afford it. I don’t have the time nor the energy to go back to that again. Please advice.

Thank you for reading and for your comments/advice. For those who have just started on Methimazole, there is hope.

Caro

[snelsen]

#1179515

Hi Caro!!
SO SO glad to hear from you. It is late her, and I am super tired, pretty much done for the day. But wanted to tell you what you already know! Several people have been on ATD for a long time, including Kimberly! I want to reply in more detail to the rest of your post, but it’s gotta be tomorrow!

Your thinking is logical, rational and makes perfect sense to me. It seems it should to him, as well. What’s the harm? Thinking has really changed regarding ATD’s and they are one of the three treatment plans.

Great that HE is comfortable with discontinuing the med. I understand where you are coming from. Yep, you need to be vigilant about labs and how you feel. That is not much different than having thyroid replacement, other than there are some risks, though very small, and mostly at the very beginning, of ATD’s, You know all that.

gotta go nighty night!
Shirley

[Robboford]

#1179516

Hi Caro,
So pleased to hear from you. Glad that things have been going wellish for you. I am still at work at the moment and it is a busy time close to the end of the month. I will read your post and think about it in more detail a little later today. Once again, great to hear from you – will post later.
Cheers
Deb

[Raspberry]

#1179517

Congratulations on doing so well! And now for this endo…there is a study somewhere about people maintaining their remission if their TRab is low enough when they stop the methimazole. Maybe someone here will have the link handy. Do you think your endo would be open to seeing it? My endo won’t do TRab testing but will do TSI and my antibodies are still kicking even though I’m on less methimazole than you are. I don’t want to go through this all over again either!

[karenz516]

#1179518

Hi Caro, I am not a doctor but I personally believe every person needs to be there own advocate. I also believe that we each know in our gut what is the right thing for us to do or not do. I did not take anti-thyroid meds because I was also hospitalized for a-fib and had elevated liver enzymes so I was given RAI on 12/14/12. I went hypo in April but still not feeling the best I think I should be. My endo has me getting blood work every 4 weeks for TSH, Free T3 and Free T4 but this time on the long list that I give the lab work I checked the boxes for cortisol, calcitonin and iron because I want to know what my numbers are going to be. I am sure my endo will give me a hard time for doing that but hey, its my body and I am the one paying for the test. The moral of my story is that you need to do what you think is right. I have read where people have been on the same meds you have been for years and years, do their lab work and feel fine. So my advice “if ain’t broke, don’t fix it”. karen

[CycleColo2013]

#1179519

Hi Caro,

It’s a shame that when I had my thyroid hacked out last week I got rid of three months of Methimazole; we could have started a bootleg market in thyroid drugs!

I can’t tell you what to do – but I can share my experience. Over the years I’ve found out that it pays to trust my gut on these kinds of decisions and make sure that I am dealing with someone who hears what I am saying and treats my concerns respectfully.

Sometimes the less experienced, generally younger, are afraid to be wrong so they are assertive in their recommendations because they are unable to put aside arrogance and insecurity and simply say, “you got a point.” Though, the fact that he agreed to continue for three months tells me this may not be so. If he is overly experienced, perhaps he thinks he has seen so many cases, he has forgotten to look at the individual and to listen. I commend the people that are doing this for a living…but they aren’t perfect. And I found that two I went to who had more accolades and reputation in their field were the least likely to listen.

Or perhaps, he has some perfectly rational reason for his thinking and hasn’t taken the time out to hear your concerns and to explain his reasoning. He owes you that. And while you will be able to sort it with him, you can always get a second opinion if you aren’t feeling good about this one.

I started methimazole in 1998 and had a fifteen year run with it. Every time my numbers came back good, dose got lowered. The numbers would stay good, I would feel sluggish and apathetic and eventually stop taking the medication. Five or six months later I’d find myself in a hyperthyroid state – rash decisions, quick with the tongue, impatient… Then my partner would say – when was the last time you got your numbers checked. Given your history, you likely do not want that experience.

The most recent run before the surgery was the longest “normal” period I’ve had – and I kept taking a 10 mg. dose of medication every other day or every third day. I was in range for something like 4 or 5 years, and I did think that would be it. (When I got out of sorts again and my numbers were off is when I made the decision to have surgery, but that is a completely different discussion. It had nothing to do with the safety and efficacy of methimazole.)

So I guess what I am saying is make sure you are heard, get explanations, and if you don’t feel like that is happening get a second opinion from someone who helps make decisions based on numbers AND what the patient says is their experience… Cheers, Bill

[Naisly]

#1179520

Your right to question him. You are hiring him to do a job. I am trying to find some stuff I had, but in the past 5 months I have lost 2 computers and a bit sloppy with my organization skills. But I will say, you must have your antibodies tested before you are taken off of the ATD’s – I would say TSI as well as TRAb.

TRAb because it shows 3 – Total in one number.
TSI because will show if you have any stimulation.

Ok, for example (because I am sure I confused you) Right now my TRAb is 1.1, which is not too bad. And one would think, great, no antibodies. Well this is not the case with me because currently I am still getting stimulation. I can tell because as I lower my dose, my TSH drops fast. So, this means that the TRAb of 1.1 is probably mainly TSI, so for me to know for sure, I need to have TSI labs run. Also, I know my thyroid is still inflamed because my TPO is over 200 (down from 2500). Remember, there are only 2 things that can stimulate your thyroid that is:
TSH
TSI

Also remember that antibodies are the cause for Graves Disease. Not the thyroid itself. It seems that many doctors ‘assume’ the patient is in remission because TF’s and TSH are normal, then ween the patient from ATD’s only to find them bounced back to hyper. This is because there were still antibodies left. This is why some people stay on ATD’s longer than others. I think it ranges from 4months to 30+ years. It is all dependent on antibodies.

Anyways, I know I have some medical journals/research some place to share with you, but it is just a matter of finding them.

Keep up the great work!

[Stymie]

#1179521

Hi Caro!

You know your body and what is best for you. Do what you think is best. Many people here are on ATDs long term with no issues. Only you can be your own advocate. Speak up to him and tell him what you want. Otherwise, IMO I would find a new endo.

Hindsite is 20/20. You don’t want to look back on this and say shoulda woulda coulda. I wish I had been more of an advocate for myself.

Good luck to you and whatever revision you decide to make and big hugs.

Diane

[MaryI]

#1179522

Hi Caro,
It is fantastic that you feel good! I also, just over a year on Methimazole, was asked by my endo if I felt lucky and would like to go off the ATD. I said no, I was not comfortable with that as yet, so we agreed that I would stay on 7.5 mg daily. Then I needed a downward adjustment about 6 months later to 5 mg, then another 6 months later to 2.5 mg. After two and a half years on the ATD I started to feel weird again and so the endo thought that I was over medicated. Yipee! Remission? Anyway I have been drug free for 5 months and feel pretty good. So trust your instincts. There should be no harm in staying on a small dose for years. I know that I was not ready so soon, even though the endos keep talking about 12-18 months as the goal post to see about remission.
Anyway, it is great to hear that you feel better. I wish that the docs would talk to us about how long the healing process can take. I had no idea how much patience is needed. Maybe they don’t want us to know, because we might get discouraged. But it is worth it to try to keep your thyroid intact, if you can. I know that for some it is not an option.
Good luck, eat and exercise carefully, and continue on your way to good health!

[Kimberly]

#1179523

Hi Caro – Glad that you are doing well…other than having these issues with your endo! The latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists recommends antibody (TRAb) testing prior to withdrawing anti-thyroid drugs. The reason is that if antibodies are still raging in a Graves’ patient, withdrawal of the drugs will likely lead to a recurrence of hypERthyroidism. You can find this guidance in full in the second link in the “Treatment Options” thread in the announcements section of the forum. This would be a good document to discuss with your doctor; I have no idea why he would be unwilling to do this testing. The ATA/AACE guidance recommends a 12-18 month course of anti-thyroid drugs, *but* leaves the door open for longer-term use for patients who are not in remission and prefer that approach.

If all else fails, setting up a relationship with a new endo is an option. You can find some good resources for finding local docs in the “Looking for a Doctor?” thread in the announcements section of the forum.

Take care – and please keep us posted on what you decide!

[cmac]

#1179524

Hi Caro, I’m in a very similar situation, except I’d like to get off the ATD’s and enjoy my remission (so I think). I was diagnosed in August 12, started on 15 mg MMI and a beta blocker, eventually moved down to 2.5 mg MMI by Christmas and, just recently, a water pill (hydrochloroziade) instead of the Beta Blocker. My #’s are inn range. TSH was 5.3, (it was close to zero when I was Hyper). The acceptable range is .35 – 5.5. Six months till my next Endo appt and 3 months to labs. But the lab order is only for TSH not T3 or T4 anymore. I guess the Endo wants to see if the TSH goes Hypo before stopping the MMI. Don’t feel Hypo, have had a little weight gain but only 10 lbs or so. Anyway, have pretty good confidence in my Endo, so I’ll stay on the MMI without complaint for the time being. Best of luck.

[Robboford]

#1179525

Hi Caro,
Sorry for not posting yesterday, but had a busy day and stayed at work for longer than I should have and was pretty wiped out by the time I left work. Maybe your Endo was having a bad day (we are all human). I have found throughout my journey that I have become stronger in voicing my own opinions and ideas on what my treatment should be. I have also found the best approach is to be respectful at all times, as the Medical Professionals have studied long and hard and base some of their treatment ideas on the way they have treated other patients. As we all know, unless people have travelled our journey themselves, we all have individual needs and degrees of symptoms etc and are really the best at knowing how we are feeling. I am lucky to have a great relationship with my Endo and although he may sometimes suggest different treatments that I disagree with, I am lucky that I can discuss his reasoning and then offer my reasons in support of not agreeing with his views. Sometimes, I have had to be quite vocal about my treatments (ie when the radiologists wanted to use Contrast for my eye CT Scans and I flat out refused), by staying calm (well mostly) and acknowledging that although they were experts in their field and I am not, I am still well versed on the effects or harm that could or could not have happened to me as a result of the Contrast. Hopefully you can present your reasoning for staying on ATD’s and then he can go into more detail on what he has based his reasons on and you will both arrive at a happy medium. Best wishes to you, keep us all posted on how you are going and stay well.
Cheers
Deb

[Carito71]

#1179526

Hello everyone.

I need to apologize for just now responding to your replies and advice. It was very nice of all of you to reply and leave me so much good advice and well wishes. To all of you who have been here for a while and have helped me out before, thank you and to all the new ones, thank you too, and welcome to the forum.

Immediately after my post my husband and I went on vacation for a week and I wasn’t able to read and reply then. Definitely my mistake for posting and then leaving on vacation but I’m glad that I did because I wouldn’t have been able to later on. Upon our return from our vacation, a family member became very ill and I had to take care of her until today when she had her last follow up appointment and was told that she was recovered. I’m so glad for this for the whole situation was very complicated and she was very close to dying.

Thank you everyone again for your replies. Tomorrow I will have an appointment with my General Dr. and I will share with her my situation. Maybe she can help me with the maintenance of my treatment.

Kimberly, thank you for the information. I will print that article out to take with me. It might end up being that I will have to go with a new Endo.

Shirley, thank you. How is it going? I love this “That is not much different than having thyroid replacement, other than there are some risks, though very small, and mostly at the very beginning, of ATD’s, You know all that.” That is exactly how I feel. My Mom is on Simvastatin and she has to get her liver enzymes tested every few months. Rx will have risks but we take the risks if they are minimal and especially if all seems well with the labs.

Deb, thank you for your advice. Maybe my Endo was having a bad day but he was acting the same as every time I’ve seen him. I will approach the situation respectfully as always next time I see him. I would not loose my cool, I would tell my husband and you all about it but I wouldn’t be disrespectful towards the Dr.

Nicely, thank you for the information. It makes sense. I have written down the tests to give to my General Dr. tomorrow. I haven’t had a TSI done in a while. How are you?

Everyone, thank you again. I’ll keep you posted. Thank God for this forum

Wishing you all the best always,
Caro

[HelenYH]

#1179527

Hi Carito – I too am very much in favor of being your own advocate because you’d be your best advocate! Also agree with the others about trying out a new endocrinologist if the current one continues to insist on withdrawing from the methimazole.

BTW, to combat the liver effects of methimazole, I have found the herbal supplement (edited by moderator) very effective. After about a month of taking it, my doctor was pleasantly surprised that my liver function tests became normal! I am still on it to “protect” my liver from methimazole.

[Kimberly]

#1179528

Just a quick note that I have not seen credible research indicating that any particular supplement “protects” the liver from methimazole or any anti-thyroid drug.

For those interested in a particular supplement, please check with your doctor in advance, as some supplements can interact with your existing meds. It’s also important to make sure you are getting meds from a reliable vendor.

Just in the last couple of days, the FDA put out a warning about Vitamin B supplements that were found to contain two different kinds of anabolic steroids — neither of which was listed on the label:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm362799.htm

[Author]

Posts