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#1 April 1, 2019 06:38:06

tiredofitall
Registered: 2014-03-31
Posts: 13
Profile  

Graves' Has Destroyed My Life

Is my scenario normal? I'd appreciate any comments or help or advice about where to turn. It has really become unbearable.

22 years ago I ended up in the hospital. Thyroid storm.
Two days later, without explanation, I was given RAI. Within 2 weeks I was sleeping 18 hours a day and could barely do anything. I was told not to worry that once I got on the right dosage of Synthroid, I would be good as new. Never happened.

A year later I was still sleeping 16-18 hours a day. I gained 60 pounds. Could barely do anything for more than an hour or two, before having to have to take a nap.

I only found out 2 years later that I actually had “Graves' Disease”. About the same time, I went prediabetic and started getting neuropathy. Now I'm borderline diabetic with full-blown neuropathy.
Also, a few weeks after RAI, I developed major digestive problems, that prevent me from doing almost anything.

Every single doctor I have gone to since this has started can't comprehend the suffering I am going through. They won't look at the whole picture. They all want to treat each problem separately. All their treatments have turned out to be only temporary or the side effects are unbearable.

Am I to believe that all people with Graves' never get any relief? Is this really what Graves' is?
If this is not normal, how do I find someone to help me? The normal channels of primary physicians and recommended specialists are just not working.


I am really desperate to get any relief at all. I've run out of options.

Thanks for listening.

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#2 April 1, 2019 08:58:43

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 436
Profile  

Graves' Has Destroyed My Life

I'm sure you'll get other responses but since I popped in here just because I haven't in so long, I thought I'd reply. No, Graves Disease is not going to rob you of your life forever. You WILL be able to get your life back. I was diagnosed with Graves several years ago and when I couldn't control my TSH levels with meds, I opted to have my thyroid removed. Has it made all my problems go away? No, of course not, but do I regret doing it? No.

I still have TSH fluctuations (and am still trying to figure out what causes the ups and downs but I probably never will) so when I feel my TSH is off, I have blood drawn and me and my doctor adjust my Synthroid accordingly.

Am I free of any Graves symptoms? No. I have various symptoms whenever my TSH is either rising or falling, even slightly, I'm incredibly sensitive to the changes. But do they interfere with my daily life? No.

I'm sorry I can't help you with finding a good doctor but don't lose help - you WILL get your life back.
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#3 April 1, 2019 11:15:39

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4097
Profile  

Graves' Has Destroyed My Life

Hello - Sorry to hear you are going through this. We're fellow patients here, so all I can suggest to you is to keep searching until you find a doctor who is willing to help you get your quality of life back by leaving no stone unturned - whether that is finding a connection with your Graves' or finding another cause. Not sure where you are located, but perhaps a center that is known for comprehensive care - like Mayo or Cleveland Clinic might be better able to put all the puzzle pieces together.

Wishing you all the best - please keep fighting until you can get some answers!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#4 April 2, 2019 04:18:39

tiredofitall
Registered: 2014-03-31
Posts: 13
Profile  

Graves' Has Destroyed My Life

SueAndHerZoo
I'm sure you'll get other responses but since I popped in here just because I haven't in so long, I thought I'd reply. No, Graves Disease is not going to rob you of your life forever. You WILL be able to get your life back. I was diagnosed with Graves several years ago and when I couldn't control my TSH levels with meds, I opted to have my thyroid removed. Has it made all my problems go away? No, of course not, but do I regret doing it? No.

I still have TSH fluctuations (and am still trying to figure out what causes the ups and downs but I probably never will) so when I feel my TSH is off, I have blood drawn and me and my doctor adjust my Synthroid accordingly.

Am I free of any Graves symptoms? No. I have various symptoms whenever my TSH is either rising or falling, even slightly, I'm incredibly sensitive to the changes. But do they interfere with my daily life? No.

I'm sorry I can't help you with finding a good doctor but don't lose help - you WILL get your life back.
Sue


Sue,

Thanks for your support. I appreciate it more than you know.
You say: “You WILL be able to get your life back.”
Realistically, if I haven't gotten my “life back” after 22 years of suffering, I have no hope that I will ever get back anything close to normal. Unless there has been some new breakthrough (which is why I am asking here), there's no hope. Nothing available at this time helps at all.

Thanks

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#5 April 2, 2019 04:23:19

tiredofitall
Registered: 2014-03-31
Posts: 13
Profile  

Graves' Has Destroyed My Life

Kimberly
Hello - Sorry to hear you are going through this. We're fellow patients here, so all I can suggest to you is to keep searching until you find a doctor who is willing to help you get your quality of life back by leaving no stone unturned - whether that is finding a connection with your Graves' or finding another cause. Not sure where you are located, but perhaps a center that is known for comprehensive care - like Mayo or Cleveland Clinic might be better able to put all the puzzle pieces together.

Wishing you all the best - please keep fighting until you can get some answers!

I had decided on my next scheduled appointment to ask my PCP about starting from scratch with a “comprehensive care” exam as you mentioned.
Thanks.

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#6 April 2, 2019 08:00:51

Liz1967
Registered: 2014-02-25
Posts: 270
Profile  

Graves' Has Destroyed My Life

5 years post thyroidectomy, and two years post last of six eye surgeries on both eyes. Except for some remaining double vision, I am back to preGraves. That being said, I had some anxiety issues before Graves and I firmly believe a perfect storm of bad life events triggered Graves, as is true with many people. My anxiety issues were certainly not made better by the Graves diagnosis and the eye disease with the worries about thyroid levels, etc. No one likes to hear that anxiety can cause real physical symptoms, but it can and it does. I have IBS, migraines and GERD, all of which can make you miserable and I do not attribute those symptoms to Graves. I feel just like I did before Graves and I keep my TSH at a good level for me. So my “normal” does include nonGraves anxiety provoked vascular and enteric issues, issues that existed somewhat preGraves and can be made worse by worry. I really do not notice any symptoms caused by slight variations in my TSH but some people do. I really do forget about Graves most of the time. Look for other causes of your symptoms too so you dont miss another diagnosis.

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#7 April 2, 2019 09:05:30

tiredofitall
Registered: 2014-03-31
Posts: 13
Profile  

Graves' Has Destroyed My Life

Liz1967
5 years post thyroidectomy, and two years post last of six eye surgeries on both eyes. Except for some remaining double vision, I am back to preGraves. That being said, I had some anxiety issues before Graves and I firmly believe a perfect storm of bad life events triggered Graves, as is true with many people. My anxiety issues were certainly not made better by the Graves diagnosis and the eye disease with the worries about thyroid levels, etc. No one likes to hear that anxiety can cause real physical symptoms, but it can and it does. I have IBS, migraines and GERD, all of which can make you miserable and I do not attribute those symptoms to Graves. I feel just like I did before Graves and I keep my TSH at a good level for me. So my “normal” does include nonGraves anxiety provoked vascular and enteric issues, issues that existed somewhat preGraves and can be made worse by worry. I really do not notice any symptoms caused by slight variations in my TSH but some people do. I really do forget about Graves most of the time. Look for other causes of your symptoms too so you dont miss another diagnosis.

Thanks.

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