[Teri_Odegaard]

#1060387

I am 50 years old. I’ll go back as far as 2002 here. When I was 39 I had a heart attack; at least that is what was put in my med records. I had every sign that said I was having one, but after the docs looked at my heart there was no trama or anything else.

I continued having heart palpitations, having no idea why and my doc didn’t know either. So I figured if he wasn’t concerned I didn’t have to be either.

in 2010 I had an appointment for cortison shot in my right arm. when the doc entered the room I stood up and the room started to spin, lost my balance and almost blacked out. Since my appointment was not in the same town I lived in I called a friend to come get me since the doc would not let me drive.

the next day the clinic called to see how I was doing. I told them it felt like me entire right side of my body “wasn’t” there. they sent an ambulance and hello er.

I had 3 mri’s done. nothing showing on my brain, but I found out I have arthritis here: c2 to c3, c3 to c4, c4 to c5, c5 to c6, c6 to c7. no wonder my neck always hurt. Nothing done about that, yet I say hopefully.

the er doc decided to check out one more thing. he was only gone like 5 minutes and came back to tell me I had GD. I was in a panic; what is it, why me, will it go away — so many more questions. I still have the same doc.

all the usual appointments; neurologist, endo. the neuro who was so pushy for personal info past the GD and pissy cause I wouldn’t say. no professionalism what so ever. she stated “you have a beautiful brain”, thank you, but that didn’t get me answers. the endo really wasn’t any better. he said that all my symptoms were in “my head”. his speciality was GD and by that point I knew more than he did.

somewhere around a year later I requested different neuro and endo.

doc asked if I had seen a ent, nope. so I went. ent…my hearing is in the “normal” range…so why the high pitched buzzing in my ears…because you pay attention to it….OMG.

the neuro doc….requested an mri…creepers that was the 5th in less than 2 years, like what is gonna change…well my brain was the same, no trama, no tumors….yep, I have vertigo…no reason for it

the endo…yep, I have gd…blood draw every 3 months…stick with my doc..any changes get in touch….ok then

at the beginning my doc and another at the clinic diagnosed me with gd just by knowing I had tinnitus and vertigo…done a bit of research on gd…those are “suppose to be” the LEAST common known symptoms.

I just want a professional some where out there to be like Dr. Graves’ who diagnosed GD in the 1800’s to get off their butt and be just a GD specialists to help all of us who suffer.

thanks for letting me tell my story.

[Kimberly]

#1182349

Wow, sorry that you have had such a miserable experience getting properly diagnosed and treated!

There *are* a lot of great doctors out there who truly care about patient education and who are truly committed to helping improve the quality of life of their patients. As our members here can attest, though, sometimes it can take multiple tries to find that doc that is right for you.

[Teri_Odegaard]

#1182350

Thanks Kimberly, maybe it’s just time to make an appointment with my endo and consider my option of a different doc.

[dhuffman63]

#1182351

On March 11 I had a TSH test (<0.01 range - 0.35-5.00) and at my endo appt today, the first, she said I have Graves. I had the TSI, FT3 and FT4 but no results yet. I've had the ringing in my ears for the past year, saw and allergist, an ENT, and finally the audiologist. He diagnosed me with moderately severe bilateral sensioneural hearing loss and gave me hearing aids but it's done nothing for the ringing-sounds like ciccadas sometimes. I thought it might have something to do with my retinitis pigmentosa. It could be Graves? Is there something I can do about it?

She put me on 10mg daily of Methimazole and 25mg twice daily of Metoprolol. I go back in 3 months for the radioactive iodine uptake and then decide on a course of action.

[Teri_Odegaard]

#1182352

dhuffman63, I don’t know if there is anything for ringing in the ears – tinnitus is what the medical profession calls it if they know about it. Mine is high pitched buzzing and been going on since I was diagnosed. The level of the noise for me changes, loud enough for me to read lips and quiet enough so that I don’t notice it. I suppose it would be different for all of us.

Might want to add your own topic on ringing in the ears. I’m sure I read one on here some time ago.

[barbra]

#1182353

Hi,

I’ve had tinnitus for almost a year before the Graves’ diagnoses and I had always thought that it was associated with the frequent migraines I used to get. After one particular nasty migraine finally eased off it left the ringing/hissing in my ears behind. Sometimes it changes not only the pitch but moves into only one ear, sometimes it’s loud, mostly I don’t pay attention to it and it’s very low. It does not seem to go away, though, and I haven’t found any remedy for it.
Now, quite a few people who have tinnitus have also been diagnosed with Graves’ disease. Maybe tinnitus is a sign of thyroid trouble to come.

Hugs.
Barbra.

[snelsen]

#1182354

Re tinnitus, or ringing in the ears, hearing crickets, etc.
I have had that since I was about 12. Sometimes surprising periods of silence, but present almost always. Does not bother me at all. Maybe that is a choice.
I don’t think it is related to much of anything at all, several of my relatives had the same thing. My docs say no cure. Not a problem for me, because the tinnitus really does not bother me at all. To my knowledge, my hearing is fine, with the exception that the loud music my baby boomer kids listen to, kills my ears, the commercials before a movie the same thing. seems too many things are too loud!!!
Shirley

[De]

#1182355

To snelsen, you always make such sense about graves. I enjoy your posts and your reassurance. I am continuing with more treatment for my optic neuropathy, look forward to the day when things are somewhat normal, doubt I will ever be 100%. Thank you!

[snelsen]

#1182356

Hi De!
Thank you!

I had one more thought about tinnitus! For me, it is part of my world, like the outdoor noises of birds singing, bees buzzing. When I DO have a rare moment of silence that I notice, I almost wonder if something is “not ok!” Like if all the birds stopped singing in the middle of the day, like they did when we had a total eclipse a few years ago! They thought it was nighttime!

Re where you live and where you are from! What EXCELLENT taste you have, combining Hawaii with South Dakota! I am from Iowa, so we both know what REAL winters are like! Although East coast and all of the Midwest really got hammered this past winter!

Re optic nerve atrophy. Glad you are being treated, but be sure your vision is not getting worse. It is possible to lose your vision with optic atrophy. I responded to Steroids, but only when taking them, and I definitely did need the OD to take the pressure off my optic nerve.

Re having things somewhat normal! That is a very realistic way to look at Graves’ and TED. I am always aware of my eyes, they are always dry,I an am always photophobic, and constantly patting pockets and backpacks to be sure I have slipover sunglasses with me! I try to remember always to have a visor to slap on my head if the glare of the sun interferes with my vision. And that, unfortunately, will be my lifetime baseline. Oh well. I can see, drive and read. All very big pluses!
Shirley, fellow Midwesterner

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