[Bene37]

#1058667

Hi. I was recently diagnosed this past January first with toxic multinodular goiter and then with Grave’s disease after a TSI test confirmed it. I have been on methimazole for 9 months and although it’s been a rocky road, for the most part my blood tests show it’s been working. However, I still have insomnia (wake up in the middle of the night hungry or anxious) and have problems with hunger/weight gain, occasional symptoms of hyperthyroidism and anxiety.

The problem that I’m having most, however, is getting friends and family to understand what I’m going through. My husband has been completely supportive. But others either don’t understand what I’m going through or know someone who has it and think that I’m overreacting to my symptoms. On top of that, many of my friends are pregnant or have kids and don’t have compassion or are unsupportive of how I feel. It’s especially difficult since I don’t have kids and am reaching an age where most people I know already have more than one child. And at this point, I’m not sure if a) I will be able to have kids. b) How stressful it will be for me, if I can conceive. I think the hard thing also is that I’m having trouble really relating to their issues as well. Does anyone else find that relationships change once you’ve been diagnosed?

[Kimberly]

#1169269

Hello –

Graves’ can absolutely change our relationships. Barring eye involvement or extreme weight loss, Graves’ is one of those conditions where we don’t “look” sick. This can make it difficult for others to understand what we are going through. Here are a couple of good bulletins from the Foundation that might be helpful. (You will need to click your browser’s “back” button to return to the boards after viewing):

Open Letter to Husbands:

http://www.ngdf.org/cms/modules/files/u … 762043.PDF

What’s Wrong With Me? I’m Not Myself Anymore:

http://www.ngdf.org/cms/modules/files/u … 784485.pdf

If you are available to travel in November, the Foundation’s annual Patient & Family Conference is set for Nov. 4-6 in Boston, MA. I’ve attended for the last 3 years, and this is a great opportunity to connect with fellow patients.

As for a future pregnancy, there are many women on this board who have had healthy babies after treatment for Graves’, although some choose to see a high risk OB/GYN to help guide them through the process. You might use the search function in the top right-hand corner of the screen and run searches for keywords such as “pregnancy”, “pregnant”, “conceive” and “baby” to read their stories. The really important piece is to make sure that you have been treated and that your thyroid hormone levels are under control before making the decision to conceive – this is important for both you and the baby.

[Bene37]

#1169270

Thanks so much Kimberly! I definitely think that this may be the reason. I continuously get feedback from relatives and friends that I "look the same." I appreciate the links too. Will check it out.

[Nat82]

#1169271

"But you don’t look sick" or "But you look so healthy"… Those words will always make me want to put my face in my hands and just sigh. In a twisted way, I almost want to "look sick" or have something to show for all I deal with. Have you ever met someone else with Graves’ Disease? It’s actually an amazing experience; you’ll wish you could record it so that when family and friends don’t get you, you can play it for them and shout "SEE, it’s not just me, I’m not crazy. This is Graves’ Disease!"
I can relate to you about the baby thing. I’m about to be 30 and everyone I know has a family of their own and I can’t help but be envious of them. The thing that saddens me most is Facebook lol; all I see are constant updates of my friends with their children looking so happy. I have the same fear as you do about not being able to conceive (not that I’m in a position to do so anyway) but it weighs on my mind constantly and pops up so randomly that it just simply makes me sad.
As far as the insomnia goes, I can only say that it doesn’t go away, at least not for me and even if I’m hypo. I finally had to break down and get a prescription but it’s been so great for me. I tried over the counter drugs and they just made me lazy all day; there are sleep medications that don’t do that. With that said, I’ll tell you this: I’ve been off and on so many pills just to try to be "normal/balanced".
I was diagnosed at age 12, my thyroid was removed at 15, and I’ve been crazy since. At 25 I was so depressed that I stopped wanting to live (not suicidal). It’s never been a particular thing that messes me up it just is what it is; it’s like I’m outside looking in and I’m saying to myself "snap out of it already" but sometimes it just lasts so long. I never wanted to be on any medications, in fact I’m a little opposed to them but it’s a fact that they’ve helped me. Grave Disease can cause a chemical imbalance and that can make you feel out of control and it sucks! I want to tell you this also but it’s only my experience so don’t take it as gospel: every time you see a doctor you will learn something else that is an effect of Graves’. I still get referred to other specialists and they run test after test then say its all normal (or they find something to make it something. I was referred to a Rheumatologist because my body hurt and he tried to tell me that I had juvenile rheumatoid arthritis. He said I probably had it when I was much younger but it went undiagnosed because the focus was on Graves. He said that it was a good thing that I had Graves so early because it stunted my growth therefor the arthritis did not have a change to deform parts of my body). I keep saying "just tell me it’s the Graves’ and I’ll deal with it!!!"
For me, the whole thing has been an ongoing battle from A to Z.
My advice to you is this: Make yourself heard, announce that you have Graves’ Disease and when people ask you what it is give them the materials they need to understand it (make a brochure, ask ngdf for ideas) as it’s too difficult to explain. And most importantly, find people with Graves that you can talk to, even if it’s only online or via email or go old fashioned and write letters. If you can find someone local that’s awesome (I’ve yet to here in FL) and the bond will be strong and how great would it be to call her up and just say "it’s one of those days" and she’ll understand exactly what you mean.
You’re blessed to have a supportive husband but even if he’s that he will never quite get it and I have advice for him too: Join a support group, ask him to register to this site and encourage him to find other spouses dealing with this.
I’m sorry for the short book I’ve written here, I guess I had too much stuff to say today but I hope that this helps in some way.
Your Bonded Friend,
Nat

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