[Anonymous]

#1076583

SKI, Thanks for the information. I’m so new in the game, I still have tons of questions. Is it true that RAI can sometimes worsen the eye symptoms? Also, does anyone know if you can take the flu shot while taking PTU?

[Anonymous]

#1020285

I live and work in Colorado with my wife of 5 years who was diagnosed with Graves Disease 3 years ago. She is 43 and I am 44, she is in the acute stage of the disease and is exhibiting some of the more severe psychological symptoms of this disease, by that I mean paranoia, irrational fears and worry, anxiety, depression, irritability, and even rage at times.. She currently is on PTU and beta blockers, which she takes sparingly.

I have been desperately trying to get some help for her, to no avail. She sees a Psychologist frequently and a GP who is more into wholistic approaches to healing. The problem with these techniques is that I haven’t seen any real changes in the behavior. I have been researching and trying to find any kind of therapy which might be beneficial to the both of us. Please, any suggestions will be helpful.

[Anonymous]

#1076584

Thanks Ski, actually I am very fortunate, I haven’t had bad days except in the beginning and though I will always have this disease, I am symptom free at the moment and have been for months, which is why I guess i am not ready yet. I do feel blessed because there are many people who post that are living with terrible symptoms. If I were on that roller coaster, I am sure I would have changed my direction a while ago. I wanted to give myself a year to figure this all out and that time will be up in March with being on Tapazole.

[Anonymous]

#1076585

Regarding your daughters decesion to get RAI: My Dr. told me the same thing, RAI is the quickest way to get better with the least problems. Of course we all know the issues that can happen with surgery and the anti thyroid meds have lots of side effects and some people go into remission but it is temp. Eventally you have to make a choice on how to get rid of your thyroid. Everyone has their reasons for how to get better with GD, but for me being a single Mom with two jobs and now my daughter has cancer and I have MS, RAI was the correct choice. I know it seems like a lot right now to you, but she WILL get better. She is so lucky to have such great parents who take a active role.

[Anonymous]

#1076586

My suggestion would be to see an endo, not a internal med Dr. It could be the PTU’s she is taking, I’m not a Dr. to tell you for sure. I’ve just heard of the side effects of PTU’s. Or call your drug store where you got the meds, they are great at telling you about side effects. Or she could just be still very hyper which is so hard on our bodies. Get to a good Dr., an endo only……….

[Anonymous]

#1076587

Hello there. I understand what you must be going through. While I was severely hyper my emotional health took a slide and just kept on going. I was a mess, knew I was a mess, knew I overreacted, had a paranoid edge and often was just ridiculous…and couldn’t stop it. Then there were times I’m sure I didn’t even realize I was out of control. You HAVE to keep in mind that this is not your wife. She is as exhausted, confused and unhappy as you are. Even if she can’t verbalize that.

Some of the best advice I’ve ever received was to not make any life altering decisions while hyper, don’t sign anything legally binding and roll with things. We are literally not ourselves at that point in the game. Our bodies are in survival mode, thinking it’s at war and shutting down in order to survive. We lose muscle mass, cognitive abilities and are emotionally strained to the point of breaking.

Is she seeing an endocrinologist? With symptoms as bad as you describe I would find one as soon as possible. There are only really three options to Grave’s, RAI, Thyroidectomy and ATD’s and an endo is often better equipped to help, at least in the beginning. They deal with it more, see more cases, specialize.

There is another side. And you both will make it there.

Carys

[Anonymous]

#1076588

Imagine:

Thank you for the kind words, it has only been 48 hours since her RAI but she actually slept 8 hours for the first time in I can’t tell you when. I know every day will get better for her. I am so sorry to hear that your daughter has cancer and you have MS on top of having the GD. I know they say that God does not give you more than you can handle but your plate sounds very full. I will keep you and your daughter in my prayers.

Carol

[Anonymous]

#1076589

Yes, she has seen an Endocrinologist since being diagnosed. I don’t think this guy is doing a very good job from what I’ve read here and other research I have done. He has had her on a 6 month schedule. That is doing blood work and seeing her every 6 months. I have suggested that she see another endocrinologist, which she has already made an appointment to do. I also suggested that she consider monthly blood tests, which she had already thought about. I will support her 110 percent with any of her decisions. What about psychotropic meds to take the edge off?? Is there any value in that, or is it just throwing more chemicals into an already mixed up situation??

Thanks for the information and support.. My wife and I are both committed to getting her better by whatever means necessary.

[Anonymous]

#1076590

Endos seem to be rather notorious for being strange and having differing methods. My endo is in Grand Junction and let me tell ya, the dude is odd. I was very happy the day he told me I could start doing follow ups with the family practice doc! What I learned was that you have to be informed and proactive in your care. Because only you know exactly how and what you’re feeling. When I was hyper and taking PTU we did blood tests every six to eight weeks. After my RAI the same was true.

I took Prozac, continue to actually. Many, many people on this site have done a round or two of antidepressants. Yes, it requires more pills, but for me it wasn’t much of a choice. Anything that might help even out my emotions was well worth it. And it did help me, I didn’t feel miraculously better, but able to cope. And at the time, that was worth it’s weight in gold.

I also took Ambien to help me sleep. A huge part of losing my mind and faculties was sleep deprivation. Do not underestimate the things sleep deprivation can do to a person.

Good luck. The road is long but thankfully not a dead end.

Carys

[Anonymous]

#1076591

My wife has been waiting on blood work results from the Endo this week. Are there any pointers in looking for a better Endo or one who is more sympathetic to the plight of someone with Graves’ ??

Thanks for all the info it is most helpful to hear it from people who actually know what it is all about.. I noticed that you post your e mail addy carysbarnes, would it be OK to have my wife e mail you herself?

[Author]

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