Graves disease / thyroid conditions

wannabalvnurse · Dec 9, 2010

Hey are there any other nurses out there dealing with Graves disease? I am going through the active state of graves for the second time, and not currently working because I have lost so much muscle mass, and because of the graves combined with ADHD my attention and inability to focus are a factor. Anyone else been through this and have any advice? Thinking about doing the RAI, but somewhat concerned about becoming HypO so quickly, and the effect that may have on me and my body. Any input from someone who's been through this appreciated!

I was given a temporary diagnosis of Grave's in June of 2005, however it was really Hashimoto's Disease in the making and i didn't even know it. Hashimoto's happens when you body's own immune system gets out of whack (for lack of a better word) and starts attacking healthy tissue/organs, in this case the thyroid gland, your thyroid response by overproducing thyroid hormone, so your labs read like that of a hyperthyroid (Grave's Disease) person. I was unable to focus or concentrate and exausted in just about every aspect or dimension, on the days i was really sick i was unable to work. In the end my thyroid just about lost all function and i became hypothyroid within a couple of months after the diagnosis of Grave's and was put on thyroid hormone replacement, i've been taking for 5 year's now. Unless your situation is different i would recommend the RAI because your thyroid is already in the process of destruction, and yes you will become hypo, so you will probably have to take time off from work temporarily, my sister-in-law had it done and everything came out good in the end, luckily she's a stay-at-home housewife/mom. This is not an easy road for anyone to travel because the thyroid controls EVERYTHING.

Good luck and please stay in touch here ad let us know how you're coming along.

Leelee2 · Dec 9, 2010

I am seeing the Endo again next week. We will discuss the RAI then. Thyroid doesn't seem to be burning out on it's own, I am very hyper again at the moment. Since I am off work now seems to be the best time. So you went from hyper to hypo, how do you feel now?? with the synthroid?

Thanks so much for your message, I knew somebody here had probably been through something similiar!

TheCommuter, BSN, RN · Dec 9, 2010

I had Graves Disease for seven years, from 1998 to 2005. I was diagnosed at 17 years of age, back when I was a senior in high school. I was told by my family practice physician that my thyroid would eventually "burn out" on its own, but that never happened...

I opted to receive the radioiodine ablation in August 2005, at the age of 24. By October of that year, I noticed that my behavior was less nervous, I perspired less, my appetite decreased, my menstrual flow became slightly heavier, and I was able to concentrate on tasks more sharply. Labs confirmed that I was gradually becoming hypothyroid, so the endocrinologist started me on Synthroid 100mcg daily. I've been on that dose for five years, and I must say that these "hypothyroid" years have been productive. I've earned an LVN license, then an RN license. I feel good on the Synthroid, although losing weight is more of an uphill now that I am hypothyroid.

passion4people · Dec 11, 2010

Hey are there any other nurses out there dealing with Graves disease? I am going through the active state of graves for the second time, and not currently working because I have lost so much muscle mass, and because of the graves combined with ADHD my attention and inability to focus are a factor. Anyone else been through this and have any advice? Thinking about doing the RAI, but somewhat concerned about becoming HypO so quickly, and the effect that may have on me and my body. Any input from someone who's been through this appreciated!

Hi, I do not have this condition,but my best friend of 20+ years did. She died this year in March. She was also a nurse. She went through alot healthwise before she passed. Her doctor had recommended RAI for years but she was afraid of the drawback(hypo). Her heart was constantly racing, palpitations, nervousness, hyperactive, weight loss, increased BP, etc. When she visited we had to keep our thermostat at 60 degrees and with that she still had a fan on her. Whatever you do decide soon. If you need to get a second opinion or even a third, do it. Just don't take it slightly. I miss my friend terribly. I wish she had made the decision to do the RAI even if it meant hypo, at least then I would still have the best friend a person could ever hope for. I do not know you but I am wishing you the very best with your health. God Bless :redbeathe:redbeathe:redbeathe

ptlvr3 · Dec 12, 2010

I do not have Grave's Disease but am hypothyroid which honestly has not been a problem been on synthroid for about 18 years now. My roomate has active uncontrollable Grave's. Her endo has told her that she is a very difficult case as she was allergic to the Beta Blockers not to mention almost all antibiotics and during the short time she was hypothyroid she was allergic to the levothroixine. She had RAI about a year ago and it was a very bad experience for her she was totally wiped out, missed a lot of work and was very sick. It did not fix the hyperthyroidism it took about 9 months before she went hypo and then only for a month or so. Right now the hyper is out of control and has been on verge of thyroid storm for several weeks. Even though her medical group does not usually do thyroidectomy, since the RAI was so intolerable they are more than likely going to do it but need to wait until her levels are close to normal again. She has the Grave's eye disease which is bad because her vision was greatly impaired before(macular degeneration and blindness runs in her family). She also has ADD and although I don't know how much the Grave's has complicated it(she had it pretty controlled prior to all this) I can say that seeing her go through all of this has been difficult much less her actually going through it. I have fibromyalgia and even with the pain and fatigue I have I can not fathom all she has endured. I have noticed that stress is a huge factor in the worsening of the condition. She has a high stress sales position and works mainly on commission in a corporate setting and hates to miss work(workaholic type A personality) and stress with personal issues as well. I am not telling you all this to discourage you from the RAI because she is a very unusual case but it is unique with every patient. Make sure you have a good endo and that according to your levels you are a prime candidate for the RAI plan to take time to recuperate and have some family/friend support to care for you for 3-5 days after. Being in the healthcare profession I am sure you will be sure to understand all the risks but remember in this instance you are a patient and make sure your endo treats you like a patient and not a fellow healthcare professional. Personally I have noticed that if your dr knows you are a nurse they will give you very technical information and assume you have practiced in their specialty. Wish you the best and apologize for this post being so lengthy. Remember this is your body and you are the one dealing with it so don't feel pressured to do something you are not ready for.

enchantmentdis, BSN, RN · Dec 12, 2010

I developed Hashimoto's thyroiditis in March 2010 after having Grave's for years. My sister also has it. Anyway, in April i had lost 30 lbs, had horrible diarrhea, panic attacks, psychosis, and blood pressure of 210/180, heart palpitations, chest pain, fainting spells, debilitating insomnia, arrythmias, and landed in behavioral health from a nervous breakdown, and lost my job as a result. By the time i went to behavioral health i was on inderal 20 mg 4 x day and the psychiatrist put me on high doses of seroquel. Well, that was a stroke of genius because with all the blood pressure pills and seroquel my bp plummeted to 70/40, i fainted, banged up my head, and nearly died twice. Thyroid disease nearly killed me. I had the I -131 ablation to my thyroid and am now stabilized on 100 mcg of levothroid daily. I do not need seroquel or any other behavioral/sleeping meds, etc. I am no longer on inderal, thank God. Having the ablation saved my life and my marriage, and thank God i am working as a nurse again.

Leelee2 · Dec 17, 2010

Wow, Thanks to all for sharing stories, and offering advice!!

I know that I need to do something more as the anti thyroid drugs are not working great for me currently.

Dealing with this for the 2nd time in 3 years, it is getting old fast!!! Loved hearing stories of the positive outcomes with RAI, and once my levels are more controlled, I am leaning toward choosing this option!

I WANT to get back to work, and feel better!! Thank you all again, so very much!!

Leelee2 · Dec 17, 2010

to Passion4people,

Just wanted to say that I am so very sorry for the loss of your best-friend!:redbeathe

lisa

Leelee2 · Dec 17, 2010

To ptlvr3,

Your friend has really had some uphill battles with Grave's...I feel so bad that she has been through all of that, I can't even imagine how hard it has been for her to deal with...

Hoping that she can have the TT once her levels are more controlled!! I have heard this can be successful for candidates like your friend. Believe me, I am deeply looking into all the Pro's and Con's of RAI, and won't do it until I feel 95% confident with the decision! I want to make certain that I am fully aware before making that decision, and that I feel certain that for me the benefits will outweigh the risks. Right now Endo won't even fully discuss it with me, as my levels are far from controlled even with the anti thyroid drug Methimazole. Maybe in Feb or March, i hope. Haven't seen the levels change much over the past month, so we had to increase the meds...

Thanks so much for sharing this story with me!!

lee

passion4people · Dec 22, 2010

to Passion4people,
Just wanted to say that I am so very sorry for the loss of your best-friend!:redbeathe
lisa

Thank you and wishing you a Merry Christmas with many blessings throughout the New Year ! ! ! :heartbeat:redbeathe:heartbeat