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Can anyone relate to my untreatable Grave's
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Can anyone relate to my untreatable Grave's

.  I have Grave's Disease, diagnosed in 2001, after years of trying to figure out why I was so sick.  I was sent immediately for radiation therapy due to the severity of my disease and my thyroid being so toxic my body started shutting down.  Since, 2001, I have been seen by several endocrinologists and internists, and opthalmalogists, treated with every medicine imagineable for a list of problems and ailments that wouldn;t even fit on this page.  Now 9 years later, my thyroid levels are still not stabilized, and fluctuating back and forth from hyper to hypo, to the extremes with both.  I have had 3 bilateral eye decompression surgeries, and told that I need atleast 2-5 more  procedures, and that the prior surgeries were non-productive due to the fact my grave's disease has never stabilized.  I take 200mcg of synthroid daily.  I have no thyroid due to radiation therapy, but I still get hyperthyroid, and I have problems swallowing as if my thyroid were still there.  Right, now i'm kind of jaded, and believe I will never feel better, no doctor can help me, I can't be fixed, and I am forced to live my life with the problems and symptoms assoicated with both Grave's and Hashimoto's, and Grave's Eye Disease, as well as the mental problems'issues associated with both and with any chronic illness, and now for about a year now, live with severe pain and swelling and redness, and stiffness in my hands and feet, when those used to be the only places I didn't have pain.  Sometimes I can't even make a fist, or walk.  And also live with the discomfort of not being able to swallow sometimes, to where i think i'm going crazy cause i just cant manage to swallow anything and i have to focus so hard as if i'm performing heart surgery.  And live with the guilt that I wish sometimes that someone I knew would get Grave's. just so someone i know could actually relate to the hell i've been through, and maybe that person would stop saying , "oh just be positive, stop being negative, and have faith.... Don't you know the way you think can actually cause your disease"... I just wanna scream, "i tried being positive, until i realized my disease was not capable of being stabilized.  I was positive when i had my eyeballs taken out 3 times, yet i still have the bulging, the pain, and now constant double vision that limits everything I do.  I didn't cause my disease through negativity, my disease caused my negative thinking.  I'm a victim of genetics, with both sides of family having thyroid diseases."  And the thing that bothers me the most, is that I am a new mother, well she will be 2 in january.  It wasn't a planned pregnancy, as I was told I couldn't have children.  But she is the one positive thing that I have in my life, and I worry every day that she will get my disease, I worry that my depression will affect her, i feel guilty that she has to have a sick mom, although I love her very much and let her know that and feel that every waking minute, I can't help but worry that my disease will shorten my life span, and she will be here without her mommy...  I do know she lengthened my life, saved my life, because I had given up before I had her, she is my reason to live...  
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393685_tn?1325870933
Hi -To save alot of typing go to my first journal I wrote on my profile.I was lucky to not have TED butI had a very hard time with Graves disease

There IS manageable ways to live with Graves but it is not an easy task. It takes all of you to learn what works and what doesn't. I have said this before.... I feel like I have an internet masters degree on this condition and learning saved my life.Graves is not curable.Its with you for life - so accepting for me was tough. I have accepted - but only because I beat the beasts that were keeping me ill. My children were my only strength too. If not for them I may not be here with you today.

Grave's disease isisolating. It makes you feel like no one understands - which many don't. Even the closest people in your life can't and are not able to  because of how this disease changes a person's personal profile.

OK Suggestions. I see lots of surgies for your eyes.How well do you feel your endo is treating you for the Graves? On Synthroid you may have many symptoms associated with hypothyroidism. Are these symptoms addressed as a side effect of hypothyroidism? I was a non-converter of SYnthroid medication. I was given Synthroid about 2 weeks after my RAI and spiraled downwards. No one was looking at conversion issues with this medication. I was put through the ringer of tests for other things and psych appointments. LOL - you can read more on that in my journal :) I took me realizing that I was on my own to find out my answers.This research took me back almost 10 years prior to my actual diagnoises I discovered this "conversion" theory and wanted to explore this. No Doctor would even consider this but preserverance, made me look for another doctor who would. I did find one and this doctor allowed me to try T3/T4 combo medication - along with testing me correctly for conversion issues with the 2 REAL thyroid hormones Free T3 and Free T4.

Thankfully within 3 days after on this medication - I started to find myself again. The LIGHT came back on and my mental clarity was there. That strength returning - pushed me OCD to research thyroid disease to get me completely well. I was still weak - bloated - fat - but I knew I was on the right track.

2 years after ridding all the symptoms, I Beat this Beast of Graves I still have it but Isuppressed those raging animals and live a better life then I ever did. I am broke from it.
Finding a doctor that really treats this disease individually is priceless but there ARE doctors out there and that would be my first suggestion to you

You are in the crazy treatment with this disease. Another major key for you to explore is getting the right lab That is a major key.

Another is to explore the conversion. Almost 90% of people who have their thyroid taken out by surgery or RAI lose the ability to convert appropriately. Synthroid is a T4 medication that 100% relies on converting into the active from of T3. They kept pumping T4 meds in me as you - without any T3  and I was not benefiting at all.

This is a symptomatic disease and TSH labs are almost useless. I am LOWER on TSH then I was 7 years ago with Graves...I feel fabulous... Most doctors would freak at my readings but I found the right lab ranges for me and I have a doctor that works with me to keep that level. Praise the Lord!!

It may feel like hyper and hypo - but these conditions mock each other in symptoms.... Again this is where the active Free T3 come into play. You may have not suppressed antibodies against the Graves to stop those from attacking... RAI only kills off the thyroid - it does not kill the antibodies.

Was an ultra sound done recently to see - 1. the "condition" of the thyroid left after RAI? and 2. If there is any nodule growth forming due to being left hypothyroid for years.  I am however suprised RAI was chosen for Graves since TED may become worse.

I know the guilt - many of us do - I lost all 4 years and was far from a Model Mother..... don't  burden yourself with this - it's useless. its a waste of needed Things can get better if you devote yourself to getting well. ... You just need to Believe - Research and Seek the right answers for you.








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Avatar_m_tn
I was diagnosed with Graves in 1966, had a thyroidectomy,  and growth removal from the eyes. I am blessed to be alive and am now 72 this year 2014. Hope this helps all friends who have this problem, and know that it can be controlled.
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