[Mommyof4]

#1060098

Hi Folks,

I am new to this forum. I was diagnosed with hyper thyroid in April along with Graves. My family doctor put me on a beta blocker to help with my tremors and rapid heart rate until I could see an endo and have the uptake test. I got in rather quickly to the endo and he has me on tapazole. I have been doing my blood tests every two weeks and know that my numbers are dropping and I am in the normal range. I had a visit with my family doctor to discuss my depression and lack of energy. I had what I think was a panic attack. It was the strangest sensation I have ever experienced. Starting with my vision going very dark, high heart rate and a burning sensation that started in my fingers and just worked its way down to my toes. I was shaking, heavy breathing, felt like I was going to pass out. Family doc said that it could have just been a panic attack (have been treated for about 7 months for anxiety). That episode scared me so much. My memory is toast. I joke with my friends that I am like Dorey the fish from Nemo. It is exactly how I feel. I am frustrating my husband, and he is getting angry with me as I can not remember anything. My appetite has gone from eating everything ( while losing weight–yippee), to not feeling hungry at all, to feeling hungry all the time and gaining weight again. My left eye is bulging, and runny. Eye doctor mentioned last week I should have the steroid shot under my eye. This has me in a state. I have to make an appointment for a catscan for my eyes. I hate, hate needles. My anxiety is up to say the least. I know I am luckier than most that have Graves and should be grateful. I have no idea what the future will hold. How much worse will this get? The double vision is becoming a problem at times with my driving (I drive for a living). I am so glad to have found this community. I feel pretty much on my own with dealing with this at home. I have four children under the age of 12 and a husband that works away from home. He is gone 24-32 hours at a time. I find it hard at times to cope. Anyone that could shed some light on what is going on would be greatly appreciated!!!!!!!!! Feel like I am losing my mind most days. I do not know where to begin to try and get myself back on track….

[Kimberly]

#1180306

Hello and welcome – I’m sorry to hear that you are dealing with all of this…and that your husband has been less than supportive. The following resources will hopefully be helpful; if your husband might be willing to take a look as well, that could help him understand what you are going through.

(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

Depression, anxiety, and memory issues can come with hyperthyroidism, but you will hopefully start to see some relief as the Tapazole takes effect. In other cases, there can be an underlying issue that is causing the anxiety; the video above does a great job of explaining how symptoms can often overlap.

Every patient is different, so it’s really hard to predict the course of eye involvement. Hopefully, you have an ophthalmologist on your team who is experienced in dealing with thyroid eye disease. I’m not familiar with having steroid injections done directly (steroids are more commonly delivered orally or via IV), but perhaps others will chime in here with their experiences. Here are a couple of sites that have great info on eye issues:

University of Michigan Kellogg Eye Center:
http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

University of Wisconsin-Madison:
http://www.uwhealth.org/eyecare/20-questions-about-thyroid-eye-disease/36946

American Society of Ophthalmic, Plastic & Reconstructive Surgery (good resource for finding a doctor familiar with thyroid eye disease):
http://www.asoprs.org/i4a/pages/index.cfm?pageid=3504

We also have quite a few videos on thyroid eye disease on our YouTube Channel at http://www.youtube.com/user/GravesAndThyroid

Hopefully, you have some help with your children. Dealing with Graves’ is difficult enough on its own, and it’s really important that you take some time for *yourself* right now as you begin the healing process.

Wishing you all the best…please check back to let us know how you are doing.

[Gabe]

#1180307

Hi and welcome. You’ve found the right place. All of us are patients and all of us have questions and concerns. All have Graves in common but each has a slightly different journey or outcome. I’m almost 6 weeks post TT and starting to have real eye issues (coincidental timing..not because of the surgery). I gasped when I read the recommendation from our endo about a steroid shot under the eye. Holy cow! That’s scary. I see my surgical ophthalmologist on Thursday and plan to ask about this. I too hate needles. My opinion…don’t do that unless a ophthalmologist who specializes in GD and TED is the one recommending it. All the reading I’ve done on this forum, I’ve never heard anyone mention eye shots.

I’m sure you are nervous. I know what you mean about double vision. Mine is getting worse by the day and its very scary. I wish you the best. We’re here for venting or cyber hugs or whatever you need!

Best wishes,,

Karen

[hollygsmith]

#1180308

Hi and Welcome. I’m so sorry you are dealing with all of this. It’s hard enough to be dealing with all of the hyperthyroid symptoms-I’m sorry that you are dealing with eye issues as well. I’m also sorry that your husband is not more supportive.

I’m about 6 weeks into a relapse of the eye disease. I was stable for about a year. It’s supposed to be very rare to have a relapse, but I guess I’m just lucky that way. My doctor thought I was having problems due to a sinus infection, but after no improvement, I had a CT scan and got confirmation that the eye disease is back. And boy is it angry. I’m back on high doses of oral steroids which I very much have a love/hate relationship with. Anyway, my first round with Thyroid Eye Disease was pretty severe. Was on high doses of oral steroids for a very long period, did 3 IV infusions of steroids, tried the steroid injection directly under the eye and then eventually had orbital decompression surgery and bilateral retraction repair. I actually even had a case of globe subluxation (that’s when the eye comes right out of the socket-that’s a rarity as well!) I also went for an orbital radiation consult at about 6 months into the disease but decided against it. My personal experience with the steroid injection directly under the eye was not a pleasant one. It was done only in one eye to see if it actually made a difference. First of all, the injection itself was painful. It increased the feeling of pressure in my eye for the first few days and I got little bubbles of liquid on the surface of my eye. And then, no improvement from it at all. Didn’t help with swelling, pain or pressure.

This forum is a great place for support and information. I think one of the most important things you can do when dealing with the eye disease is educate yourself. It has definitely helped me feel more empowered. The videos on thyroid eye disease on the you tube channel that Kimberly provided the link for are really great. There is a lot of valuable information there. I think knowing that you are not alone helps as well. Because who has ever heard of this eye disease before it happens to them?

Hang in there.

[Khadijah]

#1180309

I’m sorry to hear about all your difficulties. I can’t imagine having four kiddos under 12 and going through this. However, the unsupportive husband I can relate to, oh so well.

Please try to get get as much help as possible from friends, family, mother’s helper? Every bit helps when you are at the worst point, which seems to be the phase you are at right now? AKA the “Crazed Paranoid State.”

It does get better but it takes a while. Hang in there.

[Robboford]

#1180310

Hi and welcome,
Sorry to hear you are having such a hard time of this crap Graves’ Disease Journey we all find ourselves on. Other posters have posted some very good advice and I just wanted to chime in and say that knowledge is power: read all that you can, the video presentations on TED are excellent and take advantage of the search function to read up on previous journeys. Before you book in for your cat scan, if you can, check with your Endo as to whether you need the contrast that is sometimes requested as part of the scan (The contrast contains iodine, and sometimes people that are hyperthyroid can have a reaction to it, the reaction can occur days, weeks or even months after having it). I refused it outright when I had my scans done and was not popular with the staff. After checking with my Endo at my next visit, he confirmed that it would not have been good for me to have the contrast. Every journey is different though, so this may not apply to you. Once again, this Forum is brilliant and if you just need to post a message to vent or have a question to ask, there is always someone who will post back a reply. Hang in there, time is also a great healer and with time things will get better. Take care.
Cheers, hugs and kisses
Deb

[karenz516]

#1180311

Hi mommyof4, you have come to the right place!!!! I too was diagnosed with Graves Disease and Hyperthyroidism on 12/6/12 and had RAI on 12/14/12, mine was so severe my endo hospitalized me for two weeks because of a heart rate of 180 bpm. Everyone is here and so so supportive. We try to help each other and answer questions. Even though we are not doctors it is nice to read and listen to everyones story and know that you are not alone. I was so scared when all of this started but felt so reassured reading other peoples posts and experiences. We have all struggled with some of the same problems as you so hopefully you will feel a little better with all of us to talk to!!!

Karen

[babygirl46]

#1180312

Sorry ..you are going through this…but I know your pain..I was just diagnosed with having Graves a month ago …I told the doctor what do you mean Graves??? nobody in my family ever had this!!! are you kidding me!!! am I getting punished ?? oh …I can’t begin to tell you the feeling I have inside…but… you are not alone..I have felt everything you felt panicky and nervous …I have been put on meds and I am praying for relief soon…because I want my body back and yes… nobody seems to understand they think you are going crazy or something…ugh!!! I made my husband read some literature on Graves but I still thinks he don’t understand!!! but you know what that’s him!!! I have to deal with this and get me back …I am what’s important now!! and you have to think like that to because if you are not functioning right only you know how you feel…so focus on getting yourself back healthy…You are the most important person right now!!!

[Author]

Posts