[Steph82 April 21, 2013 at 8:47 am Post count: 40]

#1059897

The last few days I feel like I have fallen into a deep depression. I’m angry, I’m crying for no reason, and I have no desire to do anything. I’m a mom so I can’t give up and stay in bed like I want to, I keep wishing I could just be alone. My husband is mad at me because of my poor attitude and really wants nothing to do with me at this point. I have been trying to convey to him about how I feel but I think he’s tired of listening. I don’t know if this is the meds or what.

Here is some background – I was on 10mg of Methimazole for 3 weeks which made me feel great, and and then I had an allergic reaction to it. 3 days of swelling, hives, and joint pain. I stopped taking it and my doc switched me to PTU, 50mg 3 times a day. I hate this medicine! Since day one I have felt terrible, just kind of lethargic and zombie-like, my head feels weighted down and cloudy. It’s been about 2 weeks and I feel like I am drowning. I don’t know what to do. I can’t stop taking it, there is nothing left to take! This whole situation is really making angry!

[KimberlyOnline Facilitator April 21, 2013 at 11:49 am Post count: 4294]

#1178608

Hello – I’m so sorry that you are going through this…especially with little ones at home (not to mention a husband) who can’t understand what you are dealing with!

Since you recently switched from Methimazole to PTU, an important first step would be to call your doctor’s office and get your levels checked ASAP. There are some general guidelines as to how to convert Methimazole to PTU in terms of dosing, but they are very different drugs, so this is *not* an exact science. I would also mention to the doctor’s office the symptoms that you are experiencing. If your levels are normal and stable, then it’s worth digging deeper for other possible causes, but the switch in medication would seem to be the first priority to check out. If you just don’t feel well on *either* medication, surgery or RAI would also be options to consider.

Although your kids likely won’t be able to understand what you are dealing with, hopefully, your husband would be willing to learn about the emotional aspects of Graves’ disease. Here are a few links that will hopefully be of interest.

(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).

An Open Letter to Husbands of Graves’ Patients:
http://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

What’s Wrong With Me? I’m Not Myself Anymore:
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

The Emotional Impact of Graves’ Disease (Video):
http://www.youtube.com/watch?v=CB8_5rbCso8

Take care – and please know that you can always come here for encouragement and support!

[amosmcd April 21, 2013 at 1:20 pm Post count: 231]

#1178609

I had the same reaction to Methimazole that you are having with PTU. I felt horrible from day one, with the exact symptoms you are feeling. It worked really well, but I felt like life was not worth living the longer I was on it! I was on it for 5 weeks and finally told my endo I could not stand it any more, so he switched me to PTU, which I’ve been able to tolerate, but I tend to go either hypo or hyper on it, so I’m having a TT on the 30th. I am so sorry you are stuck without an option for switching to another med now.

We need treatment, but sometimes the treatment is worse than the disease! It’s possible that you may need to decide on RAI or total thyroidectomy to control the Graves’, if you are unable to tolerate anti-thyroid medication. Definitely contact your doc asap to find out what can be done to make you feel better.

As far as your husband–he needs to understand that the medication is making you feel this way. It’s not something that you can control. You can’t snap out of something that is being caused by your meds and you can’t just stop the meds cold turkey.

I’m divorced, but my young adult boys live with me and they were able to understand this. I had a bad reaction to prednisone when they were a lot younger and they were able to understand it was the medication, not me. Even if your kids are too young to truly understand, your husband should provide an example to them of compassion and patience while you go through this.

I hope the links Kimberly provided help him understand. Graves’ is a serious illness, and unfortunately, until you find a treatment that you can tolerate, life can be crappy for you and those around you. I wish you the best!

Take care,
Amy

[vanillasky April 21, 2013 at 3:38 pm Post count: 339]

#1178610

Count me in for depression. Kimberly if you read this, what are the symptoms of a nervous breakdown?

This might be happening to me. Between the Graves’, the rotten husband, and now I am facing female problems and having to under go tests for post menopausal bleeding, (transvaginal ultrasound) I COULD DIE. It is sooo embarrassing and degrading. I want to go hide.

I have been crying off and on and it will just come over me. My hot flashes seem to last for hours, my husband is screaming at me and being abusive emotionally, what do I do? Now I can’t leave. HE HAS THE INSURANCE.

[snelsen April 21, 2013 at 4:04 pm Post count: 1909]

#1178611

To vanillasky, and Amy, too.

For vanillasky,
Decide there is a light at the end of the tunnel. Cause there is!!!
I think I posted this, but I have had the transvaginal ultrasound twice, once for unsuspected vaginal bleeding, the other to follow a polyp to see if had gotten bigger in a year. The worst thing about it is having a full bladder.
Hard for you to regard it as a ho hum thing, cause you have a lot on your plate right now. Graves’ impacts us mightily. The way I am put together, I just want to get tests DONE, know the results, take action if it is really needed, and move on!! I did have a polypectomy, it was a piece of cake, and if the darn thing is bleeding, that is what you need. My experience is that when our whole world, and all aspects of it are out of control, that is when it is all too much,
the phrase “nervous breakdown” pretty much means that there are so many sources of stress at the same time, that a person stops doing the functions of daily living that need to be done. Here’s one definition:
nerv·ous break·down
psychiatric disorder: a psychiatric disorder, usually caused by intense stress or anxiety, in which somebody becomes incapable of coping with daily life and exhibits low self-esteem or depression

I don’t know if it will help you, but lists help me a lot. Inaction contributes to my feeling weak, out of control and super stressed.
Priority helps, too.
1. Ultrasound, get it done, out of your life, learn the results. If it is fine, you had and episode of weird vaginal bleeding, and you know you are ok. If there is a reason, take more action, get the whole darn thing off your plate and out of your life!
2. Hot flashes-they END, they really do.
3. Graves’ -harder than #1 cause it takes longer, but it is also manageable, and you will be better than you are now. I’ve had it for 50 years.
4. Husband-I have to assume that this has been going on quite a while. so get #1, #2, taken care of, so you can think realistically and rationally about
that whole situation. You need the insurance, you are in no position right now to try to define and work on or end a marriage that has probably been the same for quite a while.
5. Kids-I don’t recall, are they at home now? How old, how many? Anyway, they are there, and we have to do the best we can not to alter their lives too much, depending on age and circumstance.

Really, it is hard to believe, but a year from now, even much less, 1,2,3 will probably non issues in your life! (:
Shirley

[Steph82 April 21, 2013 at 9:39 pm Post count: 40]

#1178612

Thanks everyone. Kimberly those links were very helpful! I recommend everyone take a look at them!

I think I’ll call my doc tomorrow… I’m hesitant because she is 100% for Rai and I know she will tell me that is the next step. My next appt and blood work are scheduled for mid May and I wanted to go in there confident in my decision on the next step I feel is best, but I don’t think that will happen. Has anyone switched docs through the middle of this journey? I want to but at the same time I don’t want to waste valuable time doctor shopping, especially since I’m really not tolerating the meds.

My husband is actually very loving and understanding, I was just having a “moment” this morning when I wrote that. It’s hard because he wants to make me feel better but I don’t think he understands that saying things like “it could be worse” is helpful, ya know!?

[vanillasky April 21, 2013 at 9:44 pm Post count: 339]

#1178613

Thanks Shirley for putting everything in proper perspective.

My mind is like a file cabinet. You know when the cabinet gets full? folders just get spilled out all over the floor. You begin to pick them up and have to re-file them and then you get bored and lose your patience.

That’s how I see myself right now. But you are giving me an order in which to do things. And that makes great sense.

THANK YOU FOR BEING THERE FOR ME

Karen:cool:

[amosmcd April 21, 2013 at 11:22 pm Post count: 231]

#1178614

I switched endo’s in the middle of March, after a three-month wait to see the new one. I decided to switch when my first endo would not give me the name of a thyroid surgeon, when I was dead-set against RAI.

There are many others on the forum who have switched endo’s. It may be that if you have to wait a long time to get into a new one, you might be able to have your care taken over by your primary care doctor, if they are willing to do that. If you aren’t happy with your current endo, that would be the first doctor to call. My primary care doc was the one who referred me to the new endo.

I’m glad things are not as bad as it seemed with your husband! I know guys want to fix things and can feel helpless when they can’t and can end up saying the wrong thing.

Keep it touch and let us know what happens.

Amy

[KimberlyOnline Facilitator April 22, 2013 at 11:08 am Post count: 4294]

#1178615

@Karen – Hopefully, Shirley’s nice post has helped you with the “re-filing” process! If you need further resources, please let me know.

@Steph82 – That’s good that he’s trying to be supportive…although sorry that his comments seem to come out in an insensitive way! As Amy noted, many patients do end up switching doctors…sometimes multiple times! This is a long-term relationship, so you want someone who will listen to you, take your concerns seriously, and answer all your questions. One suggestion would be to *not* cut things off with the current endo until you can find a new one, as wait lists can sometimes be long. Some general practitioners are also comfortable giving patients dosing direction during a gap between endos.

Take care!

[vanillasky April 22, 2013 at 8:39 pm Post count: 339]

#1178616

well, I moved up my appointment for ultrasound for Thursday. I guess that’s taking some steps in the right direction.

Originially they wanted me to wait until May 2 and I have to go to Cleveland on the 30th so I guess i will know where I stand by then.

thanks, Shirley for putting my “file folders” back in order!

Karen

[Steph82 April 22, 2013 at 9:37 pm Post count: 40]

#1178617

Does anyone feel bi-polar with this disease!? I was so depressed/upset/down feeling for days, then I wake up this morning feeling like a million bucks! Happy, singing, dancing, playing with my kids. I feel like a nut case! I’m thankful for happy days and hope the crappy ones stay away!

[KimberlyOnline Facilitator April 23, 2013 at 9:35 am Post count: 4294]

#1178618

@Karen – That’s good to hear that you were able to get an appointment that will get you some answers more quickly…*and* that won’t interfere with your trip to Cleveland.

@Steph82 – Mood swings can definitely come with thyroid levels being out of balance. Hopefully, as you get to the point where your levels are normal and stable, you will start to see a lot more good days!

[beach45 April 23, 2013 at 11:53 am Post count: 178]

#1178619

I feel for you. I was having horrible problems on Methimazole as you explain here up and down moods and depression. For me my FT3 was falling very low and my mood was horrible. I was on this for 2 years; up and down and no doctor could get me balanced. They suggested PTU and I said no thank you as I did not know if there would be much of a difference. I had terrible joint pain off and on while on Methimazole and I had terrible itching and some hives for the first three weeks I was on 10 mg. Then that ended and I went up to 20 mg and gained large amounts of weight which I still have never taken off. I had RAI May 3, 2012 and I will say now with my doctor getting my thyroid hormone dosages more accurate and my levels more balanced for me, the mood swings are not there as much and I’m much happier. If I had known for myself, that I would have had such a miserable ride on an antithyroid drug, I would have done RAI right away as recommended originally. Not that I am promoting RAI as every individual has to make up their own mind. Yes and I felt that way up and down and was seeing a therapist because of it and still am. It’s not easy yet once the thyroid levels are right for you with whatever treatment and done consistently, I am one who can say it definitely gets better! I like what Shirley says here too and yes like she says it is manageable yet like I found out it takes time and patience and sometimes for some longer.
The other thing too is keeping the doctor up to date with what is going on as whenever my moods sunk too low consistently on Methimazole, I had a blood test and sure enough my FT3 was way too low and then I got increased. Problem with me is that even with the slightest increase/decrease my numbers would go crazy either too high or low. I can say I am one now who is basically happy I did the RAI and now on the road to recovery!

Good Luck!

Beach

[Steph82 April 23, 2013 at 9:39 pm Post count: 40]

#1178620

Thanks for your story Beach! There are so few positive stories of RAI on the internet, its good to hear one. I think I may end up doing it but I’m terrified, mostly of developing the eye issues.

I’m having another grumpy day Not sad, just angry really. I don’t even like myself when I’m like this, I can only imagine how my family feels…

[beach45 April 24, 2013 at 5:17 am Post count: 178]

#1178621

Your welcome Steph82! Yes and that is because positive stories are typically not going to be posted because those people have gotten on with their lives! I had my share of ups and downs in my journey for 3 years yet there is now a light at the end of my tunnel; as far as eyes for me, I have moderate TED, diagnosed pre-RAI by an excellent TED doctor, one of the best in the country; he told me very low percentage of those who actually get affected post RAI and his Physician Assistant told me stop reading the stories of the Internet! Now if my TED had been worse, the doctor may have recommeneded TT for me. And I had that choice anyway! My eyes are no longer dry, gritty, burning or bulging like they were pre-RAI! I am getting checked though every 6 months as my thyroid eye doctor told me that the antibodies post RAI are active 3-5 years afterwards. Some who were uncomfortable with RAI turn to TT. My husband’s cousin for one had RAI 20 years ago and she is a doctor, and she is doing fabulous years post RAI on her Synthroid with one dosage change in all those years! She told me stop messing with that antithyroid drug business as you are making it hard on your body up and down and your eyes. I did not realize at the time that my fears were actually preventing me from taking a necessary step to help my body and mind heal! Well this is my story though as everyone has to do what is best for themselves with the guidance of a good endocrinologist. Some do well years on antithyroid alone or have remission, many do RAI or TT and don’t look back as they heal and move on. I look back at my fears and now I say why was I so anxious and upset? Part of that too was the disease.
I am sorry you have these types of days as I do understand as I’ve been there. Best of luck and please keep us posted….beach

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