[pj]

#1059091

I had the first severe symptoms of Grave’s 3 years ago at the age of 54. It was 2 weeks after having surgery, hysteroscopy and uterine ablation. It took 4 months to be correctly diagnosed after a horrid roller coaster ride of bad medical care, misdiagnosis, incorrect medications, etc. I won’t go into all the details now because the experience was just way too complicated.

I finally found a wonderful endocrinologist who immediately thought I had Grave’s. It was confirmed within a week with the proper tests no one else had done. After 7 months of methimazole treatment my levels got into the normal range and have remained stable in the since with a couple of small glitches a couple of years ago.

My doctor began lowering my methimazole dosage about 9 months ago to see if I am in remission. I have been taking 5 mg every other day and 2.5 mg every other day for about 6 months and have remained stable. 3 months ago I had the antibodies tests again with positive results; i.e., I am not in remission. I will have the antibodies tests again in a couple of weeks but expect they will be the same.

My doctor is now saying I need to have RAI because I still have the antibodies. Honestly, this terrifies me. I have never gotten back to my old self, the way I was before Grave’s. I have never had the energy I had before and do not enjoy life as I did before. I do not look forward to feeling worse for perhaps up to a year after RAI, getting hypo, going through medication adjustments, etc., even though I realize in the long run it may “cure” my disease.

I also have had mild depression for all of my adult life which has been treated with therapy and antidepressant medications. I handle it pretty well after all these years. However, for the last few weeks, since I have been facing the prospect of RAI, my depression seems to be increasing a bit and I have been more irritable.

I do not have much support. My boyfriend/partner of 15 years gives as much emotional and physical support as he can, but it is limited. My family has their own issues and I do not want to burden them with mine. With friends I try to act like I am doing good. During bad times with depression, I cried on too many shoulders too many times and do not want to do that again. There are not any who have gone through this and can really understand. If there was a Grave’s support group in my area, I would certainly go, but there isn’t one. If I felt I had the wherewithal, I would start one, but I don’t have it now.

I come to this forum today seeking support and advice. I am feeling alone, confused and scared. Somehow I would like to find my way back to a happy, healthy life. I would be very grateful for any support and advice people here can offer. If and when I do find my way back, I hope I can help others someday.

[Bobbi]

#1172071

Hi, and welcome to our board.

Did your doctor say why he didn’t want you to stay on the minimal dose of methimazole that you are currently on? Some folks do opt to stay on the meds.

[Darcy43]

#1172072

Hello welcome and you are not alone.

I am sorry because I completely understand how you feel. It seems like despite everything you are getting great medical care. Please do not give up. I wish I lived there so I could lend support. Thank goodness for the internet. Pray, hope, hang on. I am thinking about RAI also at this point. I am sick of taking the meds. the side affects for some (like me) are not temporary. At least with RAI, whatever side affects you may have, they eventually go away. I have several friends who have had that treatment. I don’t know what to tell you and I cannot advise you, but I really do empathize with you.

[pj]

#1172073

Bobbi,
No, my doctor has only said a person should stay on methimazole for 18 to 24 months, maximum 3 years. I am approaching 3 years. At some time in the past, FDA recommendations may have been mentioned. She also said since I still have the antibodies and am not in remissions, there is no point in continuing to try to lower my dosage.

Darci,
Thanks for the support. I will be happy to share information/experiences with you.

I have not had any side effects from methimazole. I have thyroid blood tests every 2 months at a minimum (TSH 3rd Gen., T3 Total and T4 Free) as well as CBC/Hemograms and ALP, ALT and AST.

I will be able to say more about why my doctor want me to have RAI after I see her on June 12.

[catstuart7]

#1172074

Hi PJ, sorry to hear you are in such a tough spot – I can relate very much. I too wish I could feel normal again and it seems so far away at this point. Have you read anything about add-back or block-and-replace therapy? I’m still learning but as I understand it methimazole is supposed to help suppress the antibodies at a high enough dose so the doc gives enough methimazole to make a person hypothyroid and replacement hormone simultaneously to keep them normal for a 2-4 years. It’s supposed to lead to higher remission rates. I’ll try to find the study if you are interested.

As for me I don’t know if I’ll do it or not because I already have side effects with the low dose of PTU I’m on already. Still it’s an option to kick around. Good luck – I hope you find the best option for you.

[snelsen]

#1172075

Hi, I am definitely a patient, not a doctor.

My understanding is that you can have high antibodies for years and years. That antibodies are not the labs used to decide treatment, but more to confirm a diagnosis of Graves’ when in doubt.

My own personal experience is that my antibodies are still very high. I had the labs done again. when I developed TED.
One of the facilitators, Kimberly, has been on ATD’s quite a while now. When she sees this, I am sure she will respond with the very current information on the length of time people are on ATD’s. I believe that the prior thinking was that there was a limit to on them, but it is my impression that the current studies and thinking is that people can be on them for a long period of time, having labs along the way,as we do with all of our options.
Perhaps these are good questions to get a second opinion about. The more I think about it, a second opinion seems like a very good idea.
Shirley

[catherine]

#1172076

Hi pj
Sending you a massive hug, sounds like you need one. This forum is such a positive one and a huge help, you’re definitely in the right place.
xxx

[bellatini]

#1172077

Hang in there! This is the perfect place for you!

[Kimberly]

#1172078

PJ – Hello and welcome!

I posted some information on the current thinking (and a couple of studies) regarding long-term use of ATDs in this thread:

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

http://gdatf.org/forum/topic/42509/

Some docs will not support long-term use of ATDs, because they believe that side effects can occur at any time (although they are far more likely early in the treatment process and at high doses).

Other docs are willing to work with patients on long-term use, provided that they can maintain stable levels on a low dose and as long as they do not experience side effects.

All three treatment options do have risks and benefits, so you definitely want to do your research (from credible sources) before making a final decision.

Take care!

[elf]

#1172069

PJ – I would like to address one part of your post, about energy levels.

In my non-medical opinion, Graves strikes people who are achievers, who feel they’ve got life by the tail, who undertake a lot, carrying a horseload of responsibilities, secretly liking being admired (no! never admitting!). Who eat what they want but have excellent metabolism and thin bodies, making them feel just so slightly superior to folks struggling with weight loss. They are not necessarily A-types, but strong-headed and opinionated folks nevertheless.

I think Graves develops when the body can’t bear it anymore, but the strong-headed people haven’t been able to discern their own bodies’ cries for help, living full speed. After the diagnosis it always feels like – come on! I want to get back to my supercharged amazing self! We hurry on choosing treatment methods. We have a need to take control again – of treatment, of the life post-treatment, we need to pick up what we dropped in half-trot…

Graves is cunning that way. It makes you spend months and years on the back benches, never really letting you back on the center stage. If forces you to so ever slowly realize that the back benches IS normal life, that THAT speedy highway was your disease, not THIS slower pace. It takes time to realize that.

So basically expecting the same energy level would be the same as expecting the disease to return. Your body has corrected itself to what it feels your personal “normal” really should be. (Of course, not talking about the darkest Graves treatment months, but about the expectations for the post-treatment life).

[pj]

#1172079

Wow! Thanks for all the responses, support and info. I am truly grateful and so glad I finally decided to join this forum and post.

I worked a little late tonight and haven’t really had time to absorb it all just yet. The last few days and first few days of the month are my busiest times at work so I will put together a real response as soon as I can.

[adenure]

#1172080

Elf, Amen to that. You describe me quite well! How many people told me that I needed to slow down, rest, take care of myself, that I can’t do it all etc etc etc… I am stubborn; I’ll admit it.

Alexis

[pj]

#1172081

Thanks for the info and support. I see my doctor in 2 days and have a list of questions for her. Will post again after with the results of my appointment.

A couple of days after I first posted here I found out that my job (which I love) is going to be changing and most of my responsibilities will cease to exist within the next year. I will still have a job within my department, but I will probably have to go back to doing things I would rather not do and have moved past. It really threw me for a loop. Not only am I dealing with the very real possibility of having RAI, now I also have to deal with figuring out what to do about my job — accepting doing what I don’t want to do or finding a new job. The timing is not good since I will have to deal with a job change, whatever it is, while recovering from RAI and trying to get back to “normal”. I got quite depressed for about a week but am doing much better now.

elf,
You description of does not really fit me, except I have had a lot of stressful events in my life over the years and I am somewhat strong-headed. Maybe the fact I feel I have not achieved as much in my life as I could have and have been capable of makes me a fit.

Thanks again, everyone.

Take care.

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