[Kimberly]

#1181108

Wow, I’m SO sorry to hear of all that you have been through in recent years, especially your husband’s passing. I didn’t realize your kids were a little older, but yes, if they are having symptoms, it’s certainly worth a quick and inexpensive blood test!

I’ve heard a couple of anecdotal stories on the “bee sting” therapy, but my sister is deathly allergic to bee stings (she has to travel with an EpiPen), so I would definitely consult with a physician – and use *extreme* caution – before considering this option!

[AllieKatz]

#1181109

Kimberly,

Thank You again!
Like your sister, I was allergic to bees for years and tested a + 5 allergic reaction to Bee Stings and needed to also carry an EpiPen along with an Albuterol inhaler and Benedryl (or Claritin)…Then when I was tested again a few years ago via my allergist, my bee sting allergy was and is currently insignificant, between (+1 to +2) reaction…Ironically, today I was swimming in my backyard and I was stung. I have not been stung in years.. …I took claritin and my Albuterol inhaler and did not have a major reaction (no asthma attack or hives. I used to have both when I was stung in the past) ..My arm is very swollen which is normal. I pulled out the stinger and applied toothpaste to the area…..If I were to have bee sting therapy, I would definitely check with my Allergist prior to doing so.
Do you know which Universities have the most effective research and Development regarding Graves Disease in the USA as well as overseas?
I am a former research Scientist Biologist/Chemist/Genetic Engineer and spent many years working towards my Ph.D in the Pharmaceutical field. I teach school now….I did not complete my Doctorate due to family commitments, however since my recent Graves diagnosis, I am considering reentering the “research world”. I am hoping UCSF, UC Davis or UC Berkeley in my area may have a program regarding autoimmune diseases, clinical trials etc….I am hoping even more specific for Graves..I may even phone various departments or drive out there to try and convince the autoimmune scientists to apply for research grants, fellowships etc.. in this “much needed” area. . . Thanks Again

[Kimberly]

#1181110

Just off the top of my head, I do believe there is work going on at UCSF. There is also a lot of TED research being done out of Univ. of California San Diego (Shiley Eye Center) and Univ. of Michigan (Kellogg Eye Center). Johns Hopkins Univ. also has an autoimmune disease research center.

Internationally, there seems to be a LOT of research going on regarding Graves’ and autoimmunity. You might sign up for alerts on “Graves disease” on Google to get notified as studies come out, so you can check out the locations.

Hope this helps!

[AllieKatz]

#1181111

Kimberly,
Thank You again!

[AllieKatz]

#1181112

Kimberly,

I have had issues with loss of my eye sight specifically cataracts diagnosed last year prior to my Graves diagnosis in conjunction to more loss of vision since my Graves diagnosis which was diagnosed last month. I am wondering if this is related to Graves and what types of diagnostic testing I should ask my Ophthalmologist to perform when I visit him the end of this month?…I am also noticing significant hearing loss. Can hearing loss also be a function of Graves?

Thank You!

Allie

[AllieKatz]

#1181113

Kimberly,

I have had issues with loss of my eye sight specifically cataracts diagnosed last year prior to my Graves diagnosis in conjunction to more loss of vision since my Graves diagnosis which was diagnosed last month. I am wondering if this is related to Graves and what types of diagnostic testing I should ask my Ophthalmologist to perform when I visit him the end of this month?…I am also noticing significant hearing loss. Can hearing loss also be a function of Graves?

Thank You!

Allie

[Ski]

#1181114

Hi Allie,

I’ve not heard of cataracts or hearing loss as a symptom or result of Graves’ Disease. Luckily, cataracts are fairly easily treated these days. The other vision loss you mention, you don’t define. There are many types of vision loss, so it’s hard to say whether that’s related. Your doctor will know what to look for, I hope you get some help!

My Mom dealt with hearing loss from the time she was in her early 20s, and I know that can be a tough one. She didn’t have Graves’, it was a completely different (fairly rare) condition, but I would urge you to get whatever corrective device is available to you for your hearing loss — Mom always felt vulnerable and “left out” when she couldn’t hear well. She didn’t let it keep her from doing things, but every group event was a struggle.

[AllieKatz]

#1181115

Thank You everyone for your comments…I appreciate it!

[AllieKatz]

#1181117

Ski,

Thank you so much for your reply..Glad your mother was active despite her hearing challenges..Do you know if there is a Graves support group here in the bay area? It would be wonderful to start a group with guest speakers from the medical community, network, holiday parties….I live in the north bay area..My friend with M.S is active with her M.S. support group. They meet monthly in conjunction to also meeting a couple times/per month at various bay area restaurants to socialize, “dine and donate” lunch and or dinner fundraisers where the restaurants donate a percentage to this M.S. group..It is exhausting for me to get in my car and drive to a group meeting, however if it is light outside (my eyes hurt and don’t function well at night)…I am willing to drink a cup of coffee just to get myself out of the house for a Graves support group and restaurant fundraiser…

Allie

[Kimberly]

#1181116

@AllieKatz – We don’t currently have a group in the Bay Area, but there is a volunteer in that area that just completed the GDATF’s support group leader training program, so hopefully, there will be one soon. If you are on Facebook, you can check out the GDATF’s “Events” page for continued updates, or you can visit the community page on the GDATF web site.

(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).

https://www.facebook.com/GDATF

http://gdatf.org/community/find-a-support-group/

[AllieKatz]

#1181118

Kimberly,

Is one of the symptoms, a precursor of Thyroid Eye Disease “eye muscle twitchness?” My left eye muscles keep twitching..

Thank You,

Allie

[Kimberly]

#1181119

Hello – To my knowledge, eye twitching is not a symptom of TED. The Mayo Clinic notes that this issue usually goes away on its own, but there are a few cases where you will want to see a doctor:

(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).

http://www.mayoclinic.com/health/eye-twitching/MY00102/DSECTION=when-to-see-a-doctor

Hope this helps!

[snelsen]

#1181120

Hi Allie,
I’m thinking the cataracts are a separate issue. No relationship to Graves’. But from the ages of 50 they become more common. The surgical procedure is easy, you can have one done and go out to lunch the same day! REally. No pain. Re the eye doc, if he/she is familiar with Graves’they will know what tests to do. A lot of it is history, and examining your eyes. If TED continues to get worse, then there are more tests to do for that reason, but if you have mild tests, they would be normal, anyway. I am specifically thinking of visual fields and other associated tests with colors.

My TED now? All these years later? A royal pain for me. I am photophobic, always have to have sunglasses even in SEattle, and always have a visor with me (glare) One eye does not close at all when I sleep, and I tape it closed at night. Eyes are usually dry and itchy. I have eye drops with me all the time.
I am a rare and severe TED person, though.

Hearing? No knowledge of it and Graves’. Cataracts and hearing loss tend to begin to “present” as we age (:
Shirley

[shakira7]

#1181121

Hello everyone,

First of all, thank you, AllieKatz, for giving us a chance to share our experience with Graves.

Here is how mine started, before I was officially diagnosed with Graves in Sept 2012. I have always been a healthy fitness-oriented individual who eats healthy, doesn’t smoke, doesn’t drink (except on those special occasions), etc.

– For several years before Sept 2012, I’d experienced a palpitation; I ignored this, thinking it’s because I drink coffee and I eat fast or because I exercised a lot.
– For a couple of years, I noticed that I would eat like a horse but never gain a single pound, which, of course, didn’t bother me; it did the opposite, to make me feel confident that I can eat whatever I want and never have to worry about weight gain.
– Since summer 2012, my 6 days-monthly period decreased to 3 days period, almost as if I were going into pre-menopause….at age 40, that’s a bit early I thought. I went to see a walk-in clinic, and they dismissed my case, saying not to worry, it happens.
– Since August 2012, I noticed my hair would fall out one by one, to the point where it bothered me.
– Since August 2012, I started to feel extremely tired all the time; I come home from work and I’d fall asleep for 3 hours. I have a very low-stress job, so job was not an issue. On weekends, I’d just sleep all day, and I had very little energy to go to gym.

Finally, towards end of August, I went to see my doctor, and I insisted that I get a blood test done. A week later, she called me with the result; she explained to me that I am hyperthyroid, which I had no clue what it was about. She recommended that I see an endocrinologist within a month, since my TSH is below 0.01.

Her secretary booked an appointment for me, to see an endo, the following week. When he met me, he immediately was under the impression that I had Graves Disease. CT scan after swallowing a radio-active iodine, confirmed this, and then he put me on Tapazole 5 mg a day since end of Sept 2012.

I am still on Tapazole, 5mg/3 days.

This site has been a wonderful support for me, with plenty of good resources.

Special thanks to everyone who has replied to my threads.

I am hoping to figure a way out to go into a remission with Tapazole, but knowing how impatient I am, I will most likely get my endo to listen to my decision and go for thyroidectomie.

I am also looking forward to the next 2 years to fly away quickly, so that I will be done with the TED active stage. So far, my eyelids are puffy with no other symptoms, but this, too, I’m having a hard time dealing with it.

Shakira7

[HyperLee2]

#1181122

I knew that something was seriously wrong when I began losing 8 pounds a week (for a grand total of 80 pounds in about 4 months) Also, had major amounts of Anxiety, despite increasing exercise and activity. My other sign was breaking out frequently with hives (so not fun), developed food sensitivities and allergies. I knew then that something was really wrong.
Misdiagnosed about 5 times before getting the Graves diagnosis confirmed….It was a rough time in my life.

[Author]

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