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Surrender, Graves
Dear Thyroid,
Have you ever tried to explain to someone what your life has and is like with thyroid disease; someone who has never heard of thyroid disease? I had to try and explain to my friend why I like my new doctor so much. And, at first she questioned if I was making right choice, so I had to go back a bit in time and explain the way Graves has been the roller coaster in my life for some years now.
I met my doctor at the immediate care center when I went for chest pains back in November. He was the Chief Resident of the local hospital for a long time. He’d been in medicine all his life. Hes good…..No, I want him to be okay with me not being in range, because for 2 years I have had palpitations, blood sugar drop outs and many other things happen, that is all connected to not having enough thyroid hormone. And, every time I went to a doctor I was told that I was “fine”. I was tested for diabetes and my results came back fine, because I am not diabetic. My lack of controlled hormone was and is causing the problems. Due to my blood showing numbers within their range. I was, again told I was fine.
Even though I had a blood sugar that showed my blood sugars were dropping to 52, or 53, and once 51. Anything under that can cause brain damage or coma. But, yet I was FINE.
My last endo. told me to stop coming to her office because I was fine; because my numbers said so. And she wouldn’t change my dose of synthroid. She told me to see my primary care doctor. So I did. She did blood work, and of course, I was within range. She did not want to change my dosage either, regardless of how I felt.
So with other problems I was having, she sent me to have test after test, full body CAT scans, which, of course showed that I’M FINE.
After having to pay a zillion dollars for tests I knew I didn’t need, and still in the same place, I gave up for a while and just dealt with the fact that my sugar is going to drop for no reason. Sometimes I would not go to the restroom for a week or a week and a couple days at a time (which is what the CAT scan was for). I would have chest pains. I could feel my heart skip beats. I had and have palpitations until they decide to stop (which scared the shit out of Trey).
My CAT scan showed nothing, because technically there is nothing wrong with my body or my organs; they just aren’t getting the right instructions, therefore they do not operate correctly. Actually, the CAT scan showed I had food from the tip top of my stomach to the end of the line. (TMI, I’m sure) But my primary care doctor said “Yea that’s whats wrong, and just cause your getting older. Try this, this and this.” Still. She said my thyroid levels were fine. I dealt with this all of last year. Which meant I barley ate because I had no room, because my body wasn’t processing food correctly.
In November I had to leave work early because my chest was hurting so badly, and people here we driving me nuts. On way home I stopped in at my immediate care center near my home. My doctor, the one I mentioned in the beginning happened to be the doctor working there that day. I can’t explain it better then to say he understood what I was saying. He didn’t call me crazy. He didn’t say I was imagining things (which has been said to me before, even when I lost vision). Basically, he lectured me for not doing anything and finding someone who would listen. He told me that I live in America and I have Insurance. I told him about my past 4 doctors and when I was diagnosed. He didn’t ask me to come to his office, but I asked for the information, and wanted to scream where have you been for the last 10 years!!!!
I was diagnosed in 2004 hyperactive Graves. I had (RAI) Radioactive Iodine Treatment in 2005. Since, one pill for rest of my life to control everything. If you can find the right dose your body needs, which changes just like your body changes. That’s another thing a lot of doctors will disagree with.
Before I was diagnosed I would shake visibly and eat constantly. I got down to 110 lbs, with heart palpitations, hair falling out, and horrible periods; probably the reason why I ended up having a hysterectomy at 25. I have doctors tell me things didn’t happen, like that I didn’t lose vision in my eye. I had a headache and didn’t realize it, and that’s what happened. Their tech term for that is BIRD POOP. And no, I’m not that up, DR. Woods actually used that term. I walked out of his office and never went back, and screamed in my car all the way home. I have had that happen 4 more times since, and even had my eyes checked. They’re fine.
The only reason I feel horrible now is that I agreed to let him drop my dose, to do an experiment of sorts (75MCG). When I saw him in November, he raised my dose (from 88MCG to 100MCG) and it made me feel great. I could eat, go to the bathroom bathroom. No chest pains. No blood sugar drops. No body cramps, etc. Everything was all good. But when he did blood work, it came back as me being highly overdosed, which makes no sense. Unless my DAMNED Thyroid is still alive and kicking, which it’s not supposed to be. Though, it is a possibility and would explain many things. In lowering my dose, we should be able to see if that’s the case.
Thyroid disease is one the LEAST studied, the least researched and known to people. And when you have the RAI procedure, they do not go back and check to see if your thyroid is completely inactive. They just assume it is, and send you one your way with the one pill.
When I had the Radioactive treatment, it took 8 weeks for it to “die”. When it did, I had to stay home that day because I literally could not move from the couch. I had so little hormone in me that my muscles would not move. So, I was stuck on couch watching SHAUN of the DEAD…. And that started the journey of “let’s find the right dose”. I’m still on the journey. Hopefully, I have the right doctor this time.
Written by: Amy
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(Bio) hello, my name is Amy Minton, 33, Louisville, KY. I have Graves, I am divorced mother of 2 teenagers, I work full time, and would like to share my story of trying to explain to a friend about how my life has been, how it is, and how I have had doctors react.
Tags: autoimmune thyroid disease, Dear Thyroid Letters, digestion problems, drop in sugar, extreme weight loss, finding a doctor who treats Graves disease, Graves blog, Graves forum, Graves thyroid patient letters, Graves' support, hand tremors, lack of awareness of Graves disease, Misdiagnoses of Graves, mistreatment of Graves disease, symptoms of Graves disease
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5 Responses to “Surrender, Graves”
Leave a Reply to Mary
Comments are moderated in an effort to control spam. If you have a previously approved Comment, this one should go right through. Thanks for your patience!
Amy I hate to tell ya this but I took RAI in 1979 and did fine until menopause. Took another 14yrs but after a long tooth infection and finally getting well my thyroid started growing back after 35yrs. It can happen and does. If there is any thyroid tissue left it can grow again and sometimes the only way to find out is drop the dose. Also an ultra sound. Look into a TT to see if that’s the answer to ending some of your problem. I’ve had graves since puberty and wasn’t diagnosed till I was 24 you are not alone in this. Hugs Mary
Hi Mary,
I am starting to believe that mine is also growing back. I can hear the heartbeats very very fast again and I also noticed the hunger that I have.
I hate for gaining all this weight. It really makes me feel terrible.
I will never forget how terrible I felt before they gave me the radio-active pill so I should really be grateful.
Thank you for telling me about the thyroid that it can grow back again. I am going again for tests!
Your friend,
Tina
Amy,
Graves Disease sucks, I know… I have it. Trying to explain Graves or any type of thyroid disease to people that don’t understand is difficult…. Sometimes the stories sound “unbelievable”, even to us! Thank you for sharing your story with us, I appreciate it and understand.
Amanda
Hiya Amy and Amanda.
One of the reasons I decided not to have my thyroid removed is because I spoke to a few people who had theirs taken out who all said the organ is able to regenerate. I didn’t and still don’t believe surgery is a definitive solution for everyone.
I KNEW that something has changed,in late January as I felt tired and down and this has now beenconfirmed by my blood tests.
Today I went to my Doctor’s and told her I’d stopped taking my tiny dose of ATDs because my eyes had swollen up and my blood tests showed my T3 was low. We had a really good discussion about T3 and T4 levels in Graves and she said that she would also expect the TSH range to be lower for Graves Sufferersthan for others,while still being in the normal range. This is because we produce an antibody that mimics the action of TSH in stimulating T3 and T4.
So, while the normal TSH range here in Ireland is regarded as 0.27 (low) to 4.2 (high), for a Graves patient,she said she would regard anything over 2.5 as high and therefore indicative of hypothyroidism in someone with Graves. So my session with her confirmed my hazy suspicion that my gland has calmed down loads over a very cold winter and that I am probably subclinically hypothyroid now. My doctor pointed out that my TSH rose from .49 last November to 1.15 on February 8. This is quite a big jump in just 2 months.
So,Just this week I’ve stopped taking my tiny dose of ATDs, a treatment strategy my Doctor has approved, because we both agree that a detailed focus on my blood test results shows I am much more likely to be underactive now than overactive, so ATDs are inappropriate and that’s why my eyes have started swelling. It’s odd that most doctors or endos either don’t seem to know, or never tell you, that underactivity as wel as hyperacticity of he gland ALSO causes eye swelling. Eating a very low fat and no junk food diet which is low in sugars is also supposed to help the eye swelling to stop.
I won’t see my endocrinologist until March 31st and they may well give out to me for reducing my dose of ATDs- by myself. They really don’t approve of self titration- but I see that I took the only logical course of action, when my eyes began swelling as and I can’t see the eye hospital until May, because of overcrowded waiting lists here in Ireland. And the eye hospital would just say I need to see the endos and let them adjust my meds dose.
I believe that I have the right to adjust my own dosage, given that Iprobably know probably more about my condition than most GPs, after four years of intensive struggle with my flighty and infuriating gland.
But It is great to have a GP who is able to advise a sensible course of action which I believe will keep the gland under my control. I know that that makes a huge difference to me in managing my condition. I think that if you don’t have a GP who knows much about thyroid medicine, or if you have one who you can’t connect with, it’s important to try to find one who is knowledgeable, will listen to you and offer to test you more regularly, if that’s what you need. I know regular testing, backed by my GP has made a big difference to me.
Good luck, 🙂
Hiya Amy and Amanda.
One of the reasons I decided not to have my thyroid removed is because I spoke to a few people who had theirs taken out who all said the organ is able to regenerate. I didn’t and still don’t believe surgery is a definitive solution for everyone.
I KNEW that something has changed,in late January as I felt tired and down and this has now beenconfirmed by my blood tests.
Today I went to my Doctor’s and told her I’d stopped taking my tiny dose of ATDs because my eyes had swollen up and my blood tests showed my T3 was low. We had a really good discussion about T3 and T4 levels in Graves and she said that she would also expect the TSH range to be lower for Graves Sufferersthan for others,while still being in the normal range. This is because we produce an antibody that mimics the action of TSH in stimulating T3 and T4.
So, while the normal TSH range here in Ireland is regarded as 0.27 (low) to 4.2 (high), for a Graves patient,she said she would regard anything over 2.5 as high and therefore indicative of hypothyroidism in someone with Graves. So my session with her confirmed my hazy suspicion that my gland has calmed down loads over a very cold winter and that I am probably subclinically hypothyroid now. My doctor pointed out that my TSH rose from .49 last November to 1.15 on February 8. This is quite a big jump in just 2 months.
So,Just this week I’ve stopped taking my tiny dose of ATDs, a treatment strategy my Doctor has approved, because we both agree that a detailed focus on my blood test results shows I am much more likely to be underactive now than overactive, so ATDs are inappropriate and that’s why my eyes have started swelling. It’s odd that most doctors or endos either don’t seem to know, or never tell you, that underactivity as wel as hyperacticity of he gland ALSO causes eye swelling. Eating a very low fat and no junk food diet which is low in sugars is also supposed to help the eye swelling to stop.
I won’t see my endocrinologist until March 31st and they may well give out to me for reducing my dose of ATDs- by myself. They really don’t approve of self titration- but I see that I took the only logical course of action, when my eyes began swelling as and I can’t see the eye hospital until May, because of overcrowded waiting lists here in Ireland. And the eye hospital would just say I need to see the endos and let them adjust my meds dose.
I believe that I have the right to adjust my own dosage, given that Iprobably know probably more about my condition than most GPs, after four years of intensive struggle with my flighty and infuriating gland.
But It is great to have a GP who is able to advise a sensible course of action which I believe will keep the gland under my control. I know that that makes a huge difference to me in managing my condition. I think that if you don’t have a GP who knows much about thyroid medicine, or if you have one who you can’t connect with, it’s important to try to find one who is knowledgeable, will listen to you and offer to test you more regularly, if that’s what you need. I know thatregular testing, backed up by my GP’s sage advice on when to get tests has made a big difference to me.
Good luck, 🙂