[erica]

in reply to: A very happy update after RAI #1061817

woohoo!!!! yay!!! sooooo happy to hear that someone has gotten treatment early and to happy hear the RAI has worked so well for you. i wonder if the RAI worked so well because you got diagnosed so early?

your news rocks and is certainly a pick me up for me and many others. Thanks for taking the time to come back and post ” title=”Smile” />

Take care and be well,
erica

[erica]

in reply to: Help! Labs came back today! #1061863

Thanks very much, yes they will come in the mail. I told my Husband this morning and just as I thought, He made comments about it being "just in my head"…it hurt my feelings, but i try not to take it personally. it is depressing not knowing what to do now…but i am going to just keep eating healthy and research about low income clinics.

[erica]

in reply to: Alternative options? #1061938

I just wanted to say (as probably others have as well) to really research what your body will potentially go through after the surgery. Actually try to research about each option as best you can, talking to people who have done it. if it was as simple as take it out, pop a pill, and feel awesome, everyone would do it-I sure would have. Of course people will have different reactions and “their” story, but at least you will be informed of what could happen and more prepared if something does happen.
When I had first been diagnosed the doctor wanted me either to do rai or to remove it, but those ideas scared me, I knew I didn’t want to take pills for the rest of my life. There is a link on this website to a new york times article of a girl after rai. I felt like I didn’t have any control over those options. I did feel that taking the PTU (with the risks) was a less scary idea. After all, it was worth a shot at no more pills for the rest of my life. If my body didn’t react well to it I had the control to just not take it, then seek other options. I took it for two years and felt great. I was totally fine afterward, felt good and was in remission for about 5 years. Unfortunately, now I do not feel well, but I never regret not doing rai or surgery.

Good luck making the choice that is right for you ” title=”Smile” />

[erica]

in reply to: THINNING HAIR and HAIR LOSS #1062828

thanks mamabear ” title=”Smile” /> yes, I was going through a poor me phase when I wrote that, they come and go. Sometimes I will style my hair and think how ridiculous that I am even complain! But other times when I am cleaning and find so much of my hair, see old pics of it, or my Husband comments that it is in the food ” title=”Sad” /> it gets me down. I will read the link thanks! I will buy a satin pillow case tomorrow and don’t know what a cap is, but I will check it out! As for short hair, never ” title=”Wink” /> my Husband and I both like it long. My mom is coming to visit me in a few weeks so I will get it highlighted and look for clip ins with her, I can’t wait!

I was in remission for a long time, but now can feel I am out. Went to the docotr last wed, but didn’t realize she wanted me to fast, so I couldn’t get my blood taken, booo. But, tonight I will fast and give my blood tomorrow morning, really looking forward to getting back on the PTU, that worked for me in the past. I wonder if my hair will grow back, that would be great. hmmm, well I will be ok if it doesnt.

[erica]

in reply to: This is ruining our Marriage #1061905

Thanks for not giving up. I am so sorry to hear this happening to you, I felt compelled to write because GD totally affected my past marriage and I see many parallels with what you have shared. I had met my ex-husband just as GD was just creeping into my life, I had many symptoms then, but we thought they were just stress and did not seek treatment. He did not know me without GD to know the real me, so as more symptoms started to worsen, so did our relationship. I got very depressed, would cry all the time, and became suicidal. I was not always rational in my thinking and my thoughts raced-but as that was happening I did not realize it. When I finally did see a doctor, I was in a storm state and literally felt crazed. After seeing MANY doctors, I finally found one endo who understood and helped. Like you guys, I had endos telling me opposite things (that is a whole different post!) What is important to take from this is what she is experiencing, in my opinion, is from the GD. I realize other people and doctors may say she has depression AND Graves. Of course she could, but it IS possible that all this stems from GD.I say this from my personal experience, because when I went into remission, I was the normal erica again, no crazy thoughts of dying or depression, the crying and manic moody outbursts were gone. I didn’t need any medicine for years. I really feel for you and get frustrated when I hear she hasn’t been able to respond well to meds. To me it sounds like you need to search out a new endo, but when she doesn’t want to it can make it difficult.

Like your wife, when I was very ill with GD, I didn’t want to admit it. Anxiety disorders are more talked about today and in movies, so I separated the two in my mind, and felt it had nothing to do with GD. However, over time I came to realize they were completely bound together (at least for me). Does she drink caffeine? Does she eat things with high amounts of iodine? Also foods with red dye number 3, has high amounts of iodine I have heard. I have read that artificial sweeteners are bad for folks with Graves (studies were done as former President Bush and his wife both devoped GD). I have links for that if you are curious. I think the best thing she can do is eat healthy, get enough sleep, have a routine, get a new endo, and have a family intervention-yeah I know that sounds weird, but it helps. In that state of mind, I couldn’t accept I had a problem. My mom would show me photos of happy times in the past and showed me family videos. I couldn’t dispute the fun memoires of myself that I saw. I wanted that back again. It led me on a hunt for an endo that finally helped.

Does her therapist know and truly understand GD? One that understands this behavior is “not normal” for her without graves? Getting one that even has GD would be great. What about getting her to a support group (bribe her if you must) once she hears others with similar feelings, maybe that could help her find the drive get new treatment? If I had seen a shrink during the time I had bad levels, I swear they would have had me committed! I would be careful with the shrink, on one hand, her talking to someone can help her pour out all the feelings that fill up her head, however, sometimes too much talking can twist up her thoughts and feelings, spiraling them into being worse. That is what it was like for me. I needed a strong structure and routine, not time to inflate my crazy thoughts. Having set goals also helped because I was paranoid and worried a lot about the future. Maybe you and some other close family members of hers can print out data that explains those are symptoms of the disease and they are not the “real” her. Of course it seems logical to us that anyone with fluctuating levels are going to have ups and downs, but to her it doesn’t, she (in my opinion) needs a small family intervention. Try to choose people and a situation that will minimize stress. Perhaps reminisce of a fun family time (when she was well). My mom “just happened” to have pics in her wallet and an aunt just “stumbled across” some very important GD info she printed out and brought with her to our “lunch” (intervention).

It is awesome that you are sticking by her side, but make sure you take time for yourself. The stress you are carrying can affect your own health as well. You might want to see a therapist for you. Go get a massage, take a walk, go out with a friend-and during that “you” time, you are not allowed to worry. Take care and know others are send you their thoughts and prayers. Please keep us posted.

[erica]

in reply to: Has anyone ever done Reclast IV? #1061989

Well I would have to disagree and actually the law disagrees as well (it is called ‘informed consent’). It wouldn’t matter if she left the treatment doing backflips, proper procedure was not upheld. Most attorneys would work pro bono on this simply based on the law that was broke and the fact that she was not given the right to make an informed choice about her health. Of course the case would be stronger if in fact she is ill for some time, however, I hope she recovers quickly. It is a basic medical principal and law here that has been broken. A case like this could save lives by making medical staff more aware of the importance in notifying patients of all risks involved before procedures.

[erica]

in reply to: THINNING HAIR and HAIR LOSS #1062826

I am now out of remission and have been losing my way more than I did the first run with GD. Going tomorrow, yay, for blood work. I have checked out all the hair remedies, including hair restoration. I looked into minoxidil, but it only works of you have a certain pattern of baldness, not like mine. So far I have found nothing, but the clip in extensions. They are less damaging than ones that are glued or sewn in, because you can just unclip them to sleep, etc. I feel very self-conscious about my hair loss, I shed more than my two dogs, however if one did not see me ‘before” they wouldn’t know, yet…my biggest fear is that it won’t grow back or I will lose a crazy amount of it. it is getting really really thin, and i can just pull it out by running my fingers through it. I would like to put my hair up in a pony, but can’t because the bald spots would be seen. I just remind myself that, hey I have hair, unlike a cancer patient. Then I feel very lucky.

[erica]

in reply to: Has anyone ever done Reclast IV? #1061987

I do believe when one is ill and in pain it is very possible to miss key info the doctors or nurses are throwing at us. That is why it can be beneficial to have another present at appointments, glad you agree.

But if in fact lilsispatrick was NOT informed at all of possible side effects that is grounds for a lawsuit. Imagine is she/he has this a year? That could severely impact their life and they might not have proceed with it had they known. I am rather shocked that you would think she was not mistreated. Hospitals are busy places, sometimes they shift us around like objects, it seems very possible that she was not given the correct info until it was too late. That said they might come back and ask why lilsispatrick did not ask, but that is not her job. She is the patient and I believe it is the law that the doctors, pharmacists, and pharmaceutical companies inform patients of all possible drug side effects before they take the drug. Especially with her history and that type of treatment! If she has to be off work 6 months or longer and that was never her plan because she was not properly informed to even make that an option, how will her bills get paid? Is this her fault, clearly not. She deserves restitution.

[erica]

in reply to: Has anyone ever done Reclast IV? #1061985

Wow. I am so sorry this is happening to you! This might sound drastic, and I don’t want to sound like one of those “sue happy” people because I am not at all, but I think you have a case here. Doctors are supposed to inform you of possible effects so YOU can make the choice you feel is right for you. After reading your history, your body has been through a lot! Personally, I think the more the body has to deal with (ailments and their treatments) it makes one more susceptible to more side effects. If you were not warned of the effects until it was too late, that is despicable. Are you currently taking time off of work? I am no lawyer, but this just doesn’t seem fair at all!

Are you taking anything for the pain? Sometimes having someone act as your advocate to talk to the doctor is belter. I had my mom come with me to appointments with paper and a pen. We went with questions and didn’t leave until they were answered. I have found doctors are less rude if someone else is present as well. My mom made it clear these symptoms were not “in my head” but real and need to be addressed asap. Have a family member /spouse call the doctor back and demand help. Sometimes you need to fax permission for someone else to talk to the doctor about you, other times if you pass the phone over they don’t mind.

Massage could be good for your circulation to help get the drugs out of your system. Many places have introductory rates of $35 or could be covered by your insurance. Explain to them you have had a treatment etc.

Sending positive vibes to you ! hope you feel belter soon!!!!

[erica]

in reply to: wine? #1062009

Thanks for the advice from you both. … in the past my doctor has written me a script before getting blood work back, I know maybe this wasn’t the best practice, but …. I can’t express how excited I am about getting medicine. And angry at myself for waiting so long…

I think that “unclear” thinking is one of the hardest things about Graves’ disease. It is invisible and dangerous. When I am struggling with graves, I make very poor choices and they seem logical at the time, then of course I am judged by those choices. People can think it is an ‘excuse’. Then sometimes when you are seriously upset about something people can say, oh that is just you overreacting from the graves- grrrr…. I know I have said some hurtful things to my husband that I am ashamed over, things I can’t even comprehend that I even thought, let alone said!!! He has forgiven me, but he won’t forget. I fear it has ruined the image he has of me, possibly forever.

Didn’t know about the link from smoke, good to know. My Husband does smoke in the house. I do feel the effects of it, but I don’t want to make him feel bad, as he struggles with the addition and it is a major stress reliever for him from his job. However, to know I am at higher risk for thyroid eye diseases is kinda scary. Luckily for me, even when I had graves bad I never had bulging eyes, that would really freak me out. Perhaps I will show him photos of that online.
Yay, wed and medicine is almost here!

[erica]

in reply to: long term effect? #1062002

thanks for your responce Michele.

if I find anything i will totally post it! Right now i am paranoid, lol, so it is on my mind. Any time i get too down about it, i just think, hey, it is better than cancer. It is better than having had crazy chemo. That said, my mom tells me i used to be different in the head. She knows me more than anyone and she would know. it lists the emotional effects of long term untreated graves on most sites, yuck. i guess i just want to hear that someone else went years without treament and they are ok ” title=”Smile” />

[erica]

in reply to: Feel like I’m going nuts….advice please #1062394

Blue,

Wow, your symptoms sound like you have hyper, even though the paper shows not. how many tests did you do? maybe they are not doing a full work up? I remember my frustration with waiting to see my endo, do a test, wait again, yuck! I felt like I wasn’t getting the help I needed. My advice is to see another doctor, I did a lot of switching, which I realize can be hard with insurance, but it is worth it in the end. I was offered prescriptions like Zoloft as well, but were too scarred to take them. I did get massage, which sounds pricey, but it wasn’t, I kept using the introductory offer prices at different places, some were as low as 35 dollars. I had doctors try to tell me my anxiety was from something else. Now maybe yours it, but I knew mine wasn’t. Don’t let them try to make you feel it is something wrong with “you” and not the disease. It is a symptom, not part of who you are. I had seen some lazy doctors that preferred to write a script than to research my case and be a super sleuth. I even saw one doctor that I nearly slapped in the face, when he told me he felt like my symptoms were just in my head, because the paper showed my levels were “fine”. I kept taking the thyroid medicine, I took : Propylthiouracil-even when my results were “normal”. All I knew was I didn’t feel “normal” and I kept taking them until I felt like me again. The doctor I kept let me do this as long as I didn’t have high white blood count or go hypo.

By reading other people’s stories it is evident that the tests they do can’t show everything. Have you checked out the link on this website : http://www.nytimes.com/interactive/2010 … yroid.html I watched each person and it is clear that the tests can be normal, but still produce symptoms, it just shows the medical community still has much to learn here.

i really hope you feel better soon!!!
Erica

[erica]

in reply to: Thyroid storm #1062063

My advice is to make sure you have a good form of communication with a doctor. Never think you are “bugging” them. That is what they signed up for. Please don’t make the same mistake I did.

Read all you can about the effects of destroying the thyroid. Talk with people who have done it. I personally don’t think it is a good idea after reading about it. If your doc is not taking you seriously enough or not “hearing you” change doctors. I had to see a few before I found a woman who listened and helped me. It did take trying two medicines and some time before I went into remission, but I did get there and was in remission for years. I do think I have it again, but I know it went into remission before and can again.

I was 26 when I was officially diagnosed with Graves Disease, at which point it was very serious, because I had left it untreated for many years. I just assumed it was stress. When I thought I was having a heart attack in a mall, yes a mall, very embarrassing to say the least, the EMS told me my heart rate was through the roof, but said “I was a young woman, too young to have a heart attack, it was probably just a panic attack”. I think back on how crazy that was for a medical professional to tell me. I should have gone to the hospital that day. Instead another year went by with many more “attacks”. Finally sick of all the effects it was having on my life I finally went to the hospital and the doctor informed me I had Graves disease in a very severe stage, they wanted hospitalize me but I said no. I was not in a position to even be making choices like that, but was not thinking rationaly. I was asked in in a way that made me feel bad, why I went so long with such severe symptoms. Well, I am not one to complain about my health, and I looked good so… The doctor advised immediate radioactive iodine treatment that day. He was pushing for me to even think about surgery. That was way too extreme for me to even consider. I went from just thinking I had stress to listening to some guy tell me I could die. They did all kinds of tests on my heart and blood. They gave me beta blockers, anti-anxiety medicine, and medicine to sleep. The doctor informed me after the tests, that I was VERY lucky to have a strong heart, because of how long I had been pushing it to the extremes he was shocked that I didn’t do damage. At that point having palpitations was accepted as normal for me all the time.

It is good you are questioning the severity of your case, stay on top of it. Keep a journal of your symptoms and their intensity. Stay clear of really spicy foods and caffeine, as they raise metabolism. Also, avoid foods with high iodine, like shellfish. I read you have had a hard time and have been seeing a doctor for over two years. In this time, have you seen other doctors?

For me, when it was in the “storm” range, I felt like I was going crazy in my mind sometimes. My eyes were bloodshot, face would flush easily. Heart rate was high without activity. Commercials could make me cry, actually anything, and nothing could me cry. Under my arms and feet would start sweating out of nowhere. My feet felt really cold all the time and I would sit on the edge of the tub and run hot water over them. I would get really angry with myself for dumb things or no reason at all. I got defensive about everything. Sometimes I felt like i had rocket fuel in my blood, other times I felt exhausted. My hair started falling out, a lot. My hands were very shaky. I didn’t want to be around anyone, but I didn’t want to be alone.

I know it can be different for you, but if you are worried, go to the ER. It is serious. If you tell them you are having palpations they will take you seriously. There might not ever be a single symptom for you that means, “ok, I am in a storm, time to go to the hospital”. The BIG one for me was confusion about things one should not be confused about, however be careful, because when you are confused you many not even realize it. That might sound very strange, but stay close to a friend about it. They might notice before you do. Someone living with you is “too” close, as they become naturally desensitized to your severity of symptoms, and might not even notice.

You can get it under control. Stay positive and think about changing doctors.

[Author]

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