[Ski]

#1064918

Hi Mish,

First let me say welcome to the group ~ I’m so glad you finally got the right diagnosis, you are a living example of how hard it can be! One of our main challenges is HOW to find people like you before they’ve had the right bloodwork done ~ it’s impossible, right? Would you have looked for Graves’ Disease before someone put the name in front of you? That’s just my own personal rant against "the system" ~ again, welcome, and we’re so glad you found us!

We’ve been there, the symptoms are horrid, it does help to vent, so feel free to do it here. Often, family members are not particularly supportive, especially if none of them has had any sort of chronic disorder, so we’re the right audience, we understand! Maybe we can even give you a hand with feeling well again, or at least learning how to deal with your new reality.

Let me just say that you WILL get back to something you know as normal, but it will be a while, especially since it’s been so long just getting the diagnosis. All of that time, your body was under assault. So bringing your levels back into the normal range will signal the *start* of your body’s ability to heal itself, not the end of the process. In the meantime, you will need to close ranks and do only those things that are critically important to feeding your body and your soul. We usually start to feel better pretty quickly, but getting back to "normal" is something else entirely.

Your doctor also sounds typically perfunctory ~ check, no can’t do that; check, no can’t do that; okay here’s the answer for you, take these and call me later. ” title=”Very Happy” /> Sorry about that ~ endos are the busiest doctors there are, and many of them take to this particular style of treating patients. In truth, you can bring your levels down with ATDs (that’s the methimazole), and then you can start to feel better, then you can choose between the three options for treatment. Once your levels are normalized, you can be a candidate for surgery, and RAI may not be "out" for you. ATDs are a valid option as well, I’m just saying that it’s your choice, barring any other sort of conditions that would preclude using any of the potential treatments. Listen to your doctor and sort it out yourself. It’s hard to get used to the concept of treating our doctor as an advisor, rather than the boss, but it’s better for GD patients especially. This is complex, and dealing with it is difficult. Having just a little power over our treatment can help immensely, and I have noticed that patients who have actively chosen one treatment over another have better outcomes ~ no matter which treatment they chose.

Now, about Thyroid Eye Disease ~ it has been found that almost all of us have *some* level of TED symptoms. A very small percentage end up with the worst symptoms, and smoking has been conclusively tied as a contributor to those with the worst symptoms, but of course there are always variations (it isn’t that 100% of people with the worst symptoms are smokers, in other words). An ophthalmologist is the best doctor to evaluate your condition, and it’s good to see one before the symptoms get very bad so they know how you looked "before," in case there’s an "after." For many, there is no leap into the worst symptoms, or even much that people would notice. TED is another autoimmune condition, so stress (or, more accurately, our response to stress) can cause the symptoms to worsen. A zen-like attitude definitely helps with both TED and GD.

RAI has been shown, in one study, to have the potential for temporarily worsening TED symptoms in the months immediately following treatment. For someone with extreme issues, this is a good reason not to use RAI for GD treatment. For people with minor to moderate TED symptoms, you can eliminate the potential worsening with a short course of steroids (which, of course, have their own side effect issues). RAI does not cause TED, does not permanently worsen TED.

I know this seems like a lot of information, but it’s just skimming the surface. Search around the BB and you’ll find MUCH much more stuff that you’ll find extremely helpful. I just wanted to make sure you got some response rapidly.

Wishing you luck in your treatment, and I hope you feel better SOON!!

[Mish5572]

#1018445

Hi all. I am a 39 year old mother of 3 and I was just diagnosed with Graves Disease on June30, and must say that I am really overwhelmed at the moment. My journey actually started about three years ago. I started having chest pains and headaches, and when I went to my family dr I was told I had HBP. Then 6 months later I started feeling very anxious and irritable, went back to the dr and this time was put on Celexa for anxiety. Another six months passes and I am hospitalized with chest pains and over-the-top BP. They give me nitro and the symptoms ease, they told me it was just my acid reflux…at this point I should really have started questioning my doctors…but no. Withing six months of my hospitalization I thought i was losing my mind. I was having hot flashes, I was unbearably moody (the only person I was nice to was my dog), I was worn out, my periods went nuts, and my sex drive moved out. I went back to the doctor and he politely told me that I was going through menopause..without even doing any bloodwork. I finally just gave up on going to the doctor until I felt like death. In May I changed drs, had bloodwork done twice and at the end of June had my first appointment with my endo. He put me on 30mg of Methimazole and 120mg of Propranolol per day. My Endo told me that based on my symptoms he was sure I had GD. I went back today and he confirmed the Dx from my bloodwork. He says that at the moment I am not a candidate for surgery because my levels are so high (not sure what they are because he didn’t tell me and to be honest I didn’t think to ask). He also said that with the the dry, gritty feeling in my eyes and the pain in the eyelids and behind the eyes that I am not a candidate for RAI because it could cause my eyes to bulge (Thryroid Eye Disease?).

Now that I have gotten all of that out, does anyone have any advice for living with GD? What can you tell me about TED and should I go to an opthamologist? What kind of drops can I use to help alleviate the pain. So far nothing works. I never thought that I would go from working out at the gym three times per week to not being able to walk from my car to my office without feeling like I’m going to pass out. And I can’t enjoy the summer wheather with my family. Sorry for the whining. Sometimes it is hard not to. Thanks for letting me vent.

[cynthia]

#1064919

I understand all to well I love my general practioner ( my long term docter) but he tested my blood weeks after my "hyper attacks" because I was so sick could not get to the dr. my tsh was high normal so within range when I finally get the labs a little sooner the graves showed it self…..it talkes up to 3 monthes to see a endo that is way to long and most gp will not threat hyperthroid but just refer I understand thier issues being a RN and working within the system but still don’t like it It is rediculous that you can’t get to a endo dr.faster than that now I will say I lucked out my dr. (gp) called and got me a sooner apt with endo all who have that problem ask your dr. for help with apts. after you get in should be no problem to call or see endo when necessary I am from baton rouge, Louisiana and have to say that dr. hinkle my endo is great wish she could make me better faster but am trying to be patient not easy for me I am a spoiled brat ha ha and want all back to normal now really just want my surgery go back on the 22nd of this month new labs and am going to push for the surgery….I go t o this site every am and it has been a big big blessing for me to vent and ask others how to manage this hell!!!!!!! I want to thank the special people who always answer me and try to help you are all special I expect when I get better will fall out of this site but you have stayed and only want to help!!!!! being a psych nuse all my life know how special you are and know you will be blessed… sorry about the sticky sweet stuff must be gettting soft ha ha keep you head up it will get better someday hopefully cb

[Bobbi]

#1064920

To answer a couple of your questions that I think got missed:

Endos do not treat TED — opthamologists do. Endos do look at the ability of your eye muscles to work together, and can detect some of the issues that develop with TED. Typically, however, there is no treatment offered unless the eye disease gets to a point where it is threatening the optic nerve. The disease does advance and recede without any treatment whatsoever. But for your own peace of mind, having a qualified eye doctor watching things might make you feel better.

The grittiness we feel is due to the fact that thyroid disease causes the quality of our tears to change, and they become less capable of keeping the eyeball lubricated. Normal tears are thicker, and stay on the eye without running out (unless we are crying). Thyroid disease causes the tears to lose whatever it is that thickens it; the tears become runny. So, we seem to have tears forming all the time, but our eyes are dry and gritty. The best thing you can do is use eye drops that are available in grocery stores and pharmacies, over the counter. These drops are called "artificial tears." They are not the get the red out type of drop, nor are they the type of drop used for allergies. They are just supposed to simulate normal tears. The best type to get come in a single use dispenser, without preservatives. But these are more expensive than the type that come in a multi-use bottle. Anyway, we should use the drops frequently enough to avoid that gritty feeling. The drops will not only improve those symptoms but they will help protect your cornea from scratches. Dry eyes do not heal well from a scratch (speaks the voice of experience).

Living with GD. Our treatments work to make us healthy again. That is what you can expect. Yes, we have to take some type of medication on a daily basis. A small percentage of people do go into remissions and can live without medication for a while, but the majority of us take some medication daily to keep our thyroid levels within the normal zone. But there are treatments available to us that keep our hormone levels within normal parameters, and once our bodies heal from being hyperthyroid, we get well again.

[Mish5572]

#1064921

Thank you both for your posts. At this point any information helps. I have done quite a bit of research online, but sometimes it is better to get information from someone that is going through it rather than sterile clinical overviews. I have another question. I have been having pains in my joints (feet, hands, hips, knees and shoulders) that seem to move around…and come and go. I might have a sharp, stabbing pain in my knee that lasts for 10-20 minutes and then it will go away, later I might have the same pain in my hand, or foot. It hurts pretty bad and is very annoying. Has anyone experienced this? Also, now I have this excruciating pain in my right side that will not go away. Does that sound familiar?

Thanks,
Michelle

[teacherhelper]

#1064922

I was diagnosed Oct, 2009. My eye doctor has been a godsend for me. I use Optive eye drops and SootheXP eye drops during the day and Celluvisk gell drops at night. They are over-the-counter so can be used frequently. Thge drops during the day have helped the dry, gritty feelings I had and the gel drops at night help to keep my eyes lubricated for a longer time frame. She said whatever I was doing was working well and to keep it up. I have minor eye involvement and want to try to keep it that way. I know when drops are needed and these can be used every hour if necessary without damaging the eyes.

This board has been a huge help in getting helpful ideas, feedback and in talking with people who are experiencing the same things. Many don’t understand what’s wrong because we don’t "look" sick but our bodies are screaming!!! My thyroid is enlarged so don’t know what I’ll be able to do…RAI or surgery, but I do hope for one of those in the not too distant future.

Good luck to you!

Joanie

[Mish5572]

#1064923

Thank you Joanie. I am so grateful for having found this BB for support. You are right when you say that most people don’t understand because we don’t look sick…well, most of the time anyway. My husband tries to be understanding but since I have never been sick this is difficult for him. Like last night when I made a comment about my eyes hurting, he asked if saying that made them feel better. Now, I typically try to be an understanding and forgiving person, but at that moment in time I really wanted to hurt him…badly. Anyway. Thank you again, and I hope that you are able to receive your treatment soon.

Michelle

[Mish5572]

#1064924

I go to the opthamologist tomorrow and was just wondering what to expect. So far my eye symptoms are dry, gritty and irritated eyes along with pain behind the eyeball that feels like it is pushing on the backside of my eyes and pain when I look side to side and up and down, they are extremely sensitive to light, and as weird as this sounds the pain is better when I close my eyes and I press down on them. As far as I can tell my eyes are not actually moving even though it looks as though my upper eyelids have disappeared. Does this sound familiar? Is there anything else that I can look forward to?

Thanks,
Michelle

[snelsen]

#1064925

Hi Mish, yes, it sounds familiar! ALl of it. I have all of what you have, terrible sensitivity to light, cant find sunglasses dark enough, am tempted to use an umbrella, cause the sun shining toward my eyes, cause a blind spot, so am contantly shadling my eyes with my hands. Ask for samples of eye drops when you are. After much trial and error, I have found that Soothe XP is my eye drop of choice, but I also use the big sack of samples for the eye doc. I found going to the eye doc very reassuring. Why?
Because I wanted my vision checked a lot, with no problems that were missed with my eyes. It is painful for me to look up, and straight ahead. Especially up. My eyes tear a lot for the first few hours every morning, less so during the day, but I am always with a kleenex to dab them. Basically it is not fun. There is an end in sight, they stop getting worse.
I use gel ad lubricant at night. I have explored every option of getting larger sizes of either gel or lubricant, but not possible. I don’t think ordering online saves anything at all.
Ask you eye doc to refer you to a neuro-ophthamologist, too. I suggest you also look at the posts about TED on this website.
I have a lot of them, and there are some great ones from Kimberly and Ski about TED. But first things first. It does sound like you have TED (thyroid eye disease) but you will know more after your doctor appointment.

Just a comment about your first visit to the endo. I did not think from your post that you were unhappy with him. It sounds like you are at the very beginning of this GD, maybe tEd, and that he took some time to tell you this, and put you on some appropriate meds. Regarding getting appts with endo, ALWAYS make the next appt, perhaps the following one, too while you are in the office. Have your calendar with you. I suspect, as you take these meds, you will begin to feel more normal.
I had (and most of have had) every symptom you have described. The irritability, the extreme intolerance to heat, the whole dar thing. and I never wanted to go to bed, I was too hyper. Be sure to record your pulse, it is one sign that your motor (you) is revving to fast, that is why you are taking the PTU But it takes a little while, cause you still have too much thyroid circulating on your body.
This looking ahead, and we all want to do it, but at the end of the day, you probably will have a thyroidectomy, which I had, and many on this board have choses, or RAI radioactive iodine, which others on this board have chosen. But this is not a decision you are even close to making at this time. I am so glad you have found REASON for how you feel. It is real, it is legitimate, and the dumb disease takes a while. But you will get better.
Maybe your husband might appreciating reading my post, or others on this site. Also, an air flight controller, a man, has recently written. Maybe it would be helpful for your husband to read his posts. This vision thing is really tough, and to have it when you are hyper as well is even tougher. Welcome to the club none of us want to belong to. But there IS an end.
I have not been hyper-feeling for decades. And I finally see some reason to hope for a better resolution to my eye problems.
I understand.
Shirley.

[snelsen]

#1064926

Meant to mention that Bobbi has written some great and reassuring posts about GD and TED, along c Kimberly and Ski.

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