[cormiers]

#1060237

I just finished seeing my third endo in hopes of finding someone who 1. Knows what they’re talking about or at the very least 2. Listens to me and/or 3. Cares how my symptoms/side effects make me feel

I have appointments with four other people coming up in hopes of finding that elusive and magical creature that is a decent endo but in the meantime, I’m SO discouraged and depressed, and I just need words of hope and encouragement.

I’ve been on PTU for about 5 months and truly have never felt worse. This endo’s solution is to switch to methimazole, but since we want to TTC as soon as my levels are optimal, I don’t want to do that (he says he knows that PTU is recommended for the first trimester but says he feels comfortable not following that recommendation-huge red flag right?) I DO have horrible side effects from the PTU but I can live with side effects for a few months as opposed to living with a stillborn or a child with horrible birth defects or developmental delays for the rest of my life.

I absolutely do not want to do RAI for many reasons but I don’t feel ready to make the decision to have surgery since it’s so invasive and permanent. I have a lot of concerns about antibodies post-surgery and how my levels will be made optimal and regulated before we TTC . All the endos I’ve spoken to seem to think that I’m overly cautious and over-reacting but this is my life and my health and potentially our future child so I don’t want to take any unnecessary risks.

It seems that whenever I want to talk about risks all they all say is “well even people without Graves aren’t guaranteed a healthy baby” but it’s still recommended that a woman be HEALTHY when she tries to get pregnant (that’s why it’s recommended to not smoke and drink!) and the way I feel now I doubt I’ll ever truly be healthy again (and by healthy I mean, the way I felt before I was diagnosed).

There are so many puzzle pieces and I feel like I have so many balls in the air I’m so overwhelmed that I can’t make a responsible, well informed decision about this. I’m beginning to feel that my husband and I need to talk about what we’ll do if my body is never in a position to have a baby and I just feel so depressed and discouraged with the way this so-called treatment is going. Any words of wisdom?

[ChristinaDe]

#1181447

First of all…I remember feeling so many of the same things you wrote about. And posting those very same thoughts right here on this forum.

You are NOT being “overly cautious” nor are you “overreacting”! You’re right, it’s your body, your health, your future…and it’s super important that you make the decisions that are best for YOU!! I get so frustrated when I hear that a dr said (or made) a patient feel like that. My first one did it to me & made me feel so crazy, depressed, scared & alone. Kind of hopeless even. And always made me feel like I was overreacting, like this whole thing was a simple little nuisance problem, easily fixed. My body told me different. But she made me feel like a psych case more often than not. Something none of us need when our thyroids are hyper & we’re trying to learn about a complicated disease process w/ several treatment options – all with their own sets of pros & cons & all while experiencing anxiety and everything else. I also went in search of an endo who would be a better fit. And eventually found one. Whew! What a difference that made!!!

Second, in my opinion, if you’re reasonably stable on ATD’s without any of the serious side effects (& your dr says it’s safe to do so based on your medical condition) there is usually no reason to rush into the other treatment options unless & until you’re ready to do so. In my case, I felt worse not better while on ATD’s & beta blockers so I gave up on them (still not sure which med caused me to feel that way). But they bought me time to research and understand (as best I could) the other 2 options & to at least stabilize my heart symptoms while I did. Everyone, especially my surgeon, said that it was best to wait until I was ready – medically, emotionally & mentally. I believe they were right. My post-op course went very well in the end & I think this is largely because I went into it with my eyes wide open, knowing what to expect, and sure that it was the best option for me personally.

Anyway, my surgery was this past February & I’ve done really well. My life is pretty close to what it was before I became hyper. There are others who’ve had RAI & can say the same thing. And there are several folks well controlled on ATDs & even some who’ve gone into remission & now don’t need anything. So there is hope!!! Hang in there! You’re doing the right thing in trying to find the right endo for you & it will make all the difference when you do (and you will). A good dr can make you feel so much more comfortable w/ Graves, w/ your options, w/ your future treatment plan. Such an important relationship going forward.

I can’t speak to the birth & pregnancy part since all this hit me after I had my children. But there are others here who can.

It’s not easy, and it won’t happen overnight…but you will be ok. And stick around here if it helps. It really helped me to feel supported, understood and less alone. Plus I learned more about everything to do w/ Graves’ & hyperthyroidism here than anywhere else.

I’m really feeling you!
Christina

[Kimberly]

#1181448

Hello – ChristinaDe gave you some great food for thought, and hopefully others here will chime in who have struggled with balancing treatment options and trying to conceive.

One thought would be to get hard copies of your labs, so you can see for yourself where your levels are and to try and determine if that is contributing to how poorly you feel. Another suggestion would be to document all of your symptoms and get in to see your primary care doc — *just* to rule out whether something else might be going on.

This is a really difficult decision to make, but I think you will feel a sense of relief once you’ve done research, considered all the options, and made a final choice that will allow you to move forward.

[Raspberry]

#1181449

Absolutely, what Kimberly said – please get hard copies of your labs. What you think are side effects of PTU (as long as it’s not liver issues) are likely due to your thyroid levels being at a place that are not best for you. Many endos err on the side of keeping them too low within the normal range. I have this problem as well. Even if you find someone who feels like the perfect endo I do truly believe especially for thyroid issues we must always have copies of our labs and be more actively involved in care decisions than we would typically be with other illnesses. Good luck to you!

Edited to add….also if you are planning on TTC your endos should be talking about doing Graves antibody testing beforehand because those can cross the placenta.

[snelsen]

#1181450

I have read your post, and the other posts carefully. Perhaps I have still missed something re your thought about Graves’, ATd’s, MMI and pregnancy.
THis is my summary of where I think you are.

1. Diagnosed Graves’ for five months, taking PTU.
The big question I have that relates to my other questions and understanding of your situation is this! Are you referring to pregnancy in the future, after your TT and after you are stable with thyroid supplement? Where does pregnancy enter your current status. You are not pregnant now, are you? No, I do not think it is a big red flag to switch to MMI, unless you ARE pregnant. Otherwise, why not? You want to begin to feel better and have stable labs, so you can proceed to have a TT. I think that is your plan.

2. I am wondering why you do not want to consider MMI. Why? Usually it is the first ATD recommended. There might be an additional reason for you to consider it,
cause you hate the way you feel on PTU. But how do we know what is contributing to how you feel? ***With Graves’, the big things to consider, are your labs, THE TREND AND CHANGES IN YOUR LABS WHEN YOU BEGIN AN ATD. So you should know this, and perhaps all will make more sense to you.

3. Because you clearly (I think) have chosen not to have RAI and/or stay on ATD as an ongoing treatment for the time being, the progression of things, so you can get your live back, and begin to plan to get pregnant, is to have a TT (total thyroidectomy.) This can be done as soon as you are safe with your labs.

4. I had Graves’ and after my first pregnancy, most likely developed Graves’ after my baby was making his own thyroid hormone. I had a TT, and proceed to plan and have two more children.

It is not something that you care to hear right now, but other than having good care, being recovered from your surgery, having a good OB person, and a good pediatrician lined up, while you are pregnant, you really don’t need to think a lot about all the risks, other than a normal pregnancy. Cause that is probably what yours will be. At the end of my post, I have enclosed an NIH website for your reference. But for you, it is first things first. And that is knowing you have Graves’, being treated with ATD’s. moving forward when you are comfortable, to have a TT, recover from the TT, get regulated on thyroid hormone and begin planning your family.

5. It is helpful for us to really KNOW that when we are hyper, in the middle of Graves’, we are different people. Before we receive ATD’s (so we have less thyroid hormone floating around) and making us (me) crazy, irritable, worried, sad, depressed, hungry, losing weight) it is very hard to listen to anyone about anything. After I received PTU, and was less hyper, I realized how unreasonable I was about every single thing in my life. You could not tell me anything! I was pretty hostile. It was very helpful to me when one doctor explained to me that this was “normal abnormal” and it would be better. And it was. As ChristinaDe said, when we are relatively stable, and out of that crazy place, that is the time to take your time to make the next decision. So, as has been mentioned by others, it is best for you to understand the relationship of the labs to how you feel.

6. Are there other health factors that may contribute to how you rae feeling, I suspect it is all Graves’, but a reasonable question to ask.

7. Have copies of your labs and visits. Can you do this?
Lots of good thoughts, support and advice from the other responses. Sure look forward to hearing from you again. Be aware that with medicine, ther is no “cookbook” answer or treatment to most things, and certainly not Graves’. So you might get differing opinions, and that does not necessarily mean one is right or one is wrong. Of course, there are stinkers in every profession. Sounds like you have good intuition, and will avoid one if you find one. It is true that living with a person with Graves’, having Graves’s, and treating a Graves’ patient is challenging. That is why there are so many posts from family members about how difficult it is to live with them when they are hyper. I am certainly an excellent example of that.
So, at the end of the day, you will move through this with your own good decisions, in your own time.
Keep writing, please respond to me and correct whatever understanding I may have that are mistaken in your case.
Shirley

[npatterson]

#1181451

Dear Cormiers,

I have just read all the posts to your concerns, and you have gotten some great support. Shirley’s response is nothing short of AMAZING. Please keep us posted on how you are doing.

Take care, and hang in there,

Nancy

[npatterson]

#1181452

It’s me again. I know that a long time ago, these was a long time period of new mothers and expectant mothers and hoping-to-be mothers posting (similar to the trend now about total thyroidectomies). They were all informative and encouraging. Unfortunately I have no idea how to search the old posts, but do know that it is possible. Perhaps Kimberly, or someone else with a lot more internet skill than I can help you. I think it would be well worth the considerable effort.

Take care,

Nancy

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