[DeeColleen]

in reply to: My Thyroid is Talking but My doctor isn’t listening (Communication Difficulties) Please Share your stories!! #1178710

Thank you everyone for your input; hopefully this project will be the beginning of shedding light to the break down in communication amongst doctors and patients. I still don’t quite understand why doctors, dismiss our symptoms. Blood work that tests TSH levels are quite in expensive… its quite puzzling.

[DeeColleen]

in reply to: Intra-ocular eye pressure…from Graves? #1178582

I actually suffer from Graves eye disease and the pressure is sometimes unbearable. I am extremely sensitive to light and heat (i have to make sure that no heat or air conditioning blows in my face while driving). There are ophthalmologists who specialize in Graves Eye Disease, I would try to seek one out.

Dee

Gabe wrote:

Hi all, since diagnosis my eyes have been visibly swollen and dry. Visited an ophthalmologist in February who I didn’t like and didn’t get anything out of. Went to my optometrist twice (for routine annual vision exams) since diagnosis and both times my eye pressure has been high (around 26 vs. normal of around . I’ve never had an issue with eye pressure. Today they did an optic nerve scan and the nerve is fine (to rule out glaucoma).
Asked my optometrist if he thought it was related to Graves but he didn’t seem to think so. So now it’s time to ask you all,,,the experts…is this another Graves symptom? Should I be concerned? Should I escalate to a different, new ophthalmologist?

Thanks! Karen

[DeeColleen]

in reply to: newly diagnosed #1177923

I am sorry that you are experiencing so much all in such a crammed period. Graves disease is a long journey, my doctor refuses to do the iodine treatment; thus I am stuck on methmithizole until my thyroid function is in a normal range. The experience is daunting in itself, but know that this community will provide all the support you need.

Best wishes
Dee

[DeeColleen]

in reply to: Benadryl for eye swelling? #1177619

No I’ve never heard of that. My ophthalmologist did tell me to take selenium 100 mcg twice daily; use refresh p.m. at night and restasis (s.p.) during the day when my eyes are dry. It has been helping. One thing I’ve added to this was to wear an eye mask at night; my boyfriend noticed that one of my eyes were not fully closing at night. The eye mask helps retain the moisture in my eyes.

I am really cautious about taking additional medications: Advil, tylenol, etc. Always consult with your doctor before taking anything not prescribed; especially because we are newly diagnosed you want to be absolutely certain that reactions will not occur.

I hope this helps

-Dee

[DeeColleen]

in reply to: Living with Graves Disease… #1177504

I completely agree withy you! After reading and spending sometime on this forum I’ve sudden’t felt empowered to take my treatment into my own hands, ensuring that I get treated the way I am supposed to be treated. I completely agree that people don’t know that we are sick or often forget that we are. People see me now and see my eyes and just think thats how they look, or my professors don’t understand why I am so fidgety and spacey in class.

Thanks so much for your support

Gabe wrote:

DeeColleen… I too am new to this disease and new to this forum. The disease sucks; the forum is the best! I now feel empowered and understood (at least by fellow forumers). Reading this forum helped me to manage my doctors, research my own path, understand what is happening to me, and most importantly insist on things that were not being done by my docs.

It is life altering to go thru this and unlike some diseases where others can look at you and tell you are ‘sick’, this disease (other than eye issues and weight loss/gain) can appear to others as if we are just fine (or maybe a little crazy) and not be as compassionate as they may be with other more obvious or well known illnesses.

Managing your stress levels is extremely important (as I have found). If you can scale back on your course load while you are managing your Graves you will find that makes a big difference.

Best wishes,,,Karen

[DeeColleen]

in reply to: Living with Graves Disease… #1177503

Yes, I have every copy of my medical record; I’ve made it a point to ask for those. I just have to make sure I get the ones from the ophthalmologist I’ve been seeing. I have no idea how to read the lab work; that’s something I don’t even believe my current endo will sit down and help me understand it; so hopefully when I find a new one they will. And I will take an opportunity of the lab posting. Thank you for your help; and yes I agree the support is quite comoforting.

scarlettx wrote:

DeeColleen if you haven’t already, make sure you get hard
copies of all the labs your Dr. is running and learn how to read them and where they fall into the reference ranges. It will realy help you see the big picture about how your hormone levels are responding to the Methimazole. This will also help you know if your Dr. is just raising your Methimazole dose to try and increase your TSH, which can remain supressed for a long time in Graves’ Disease. I think this site allows posting of labs, and folks can comment on the labs, as long as they don’t give treatment recommendations.

This is a wonderful support group, and even though I have only posted once or twice, it has been a great comfort to me to read about other’s experiences.
Scarlett

[DeeColleen]

in reply to: Living with Graves Disease… #1177502

Yes I totally agree with you about the hurtfulness and ignorance, at times I wish I didn’t tell them but I can’t erase that now. The comment that bother’s me the most is when my mother turns away and grimaces when she looks at me. That has definitely shot my confidence level down, I am extremely insecure now..and I despise taking pictures (something I always loved to do). I don’t mind the mushy stuff, I am happy I am not alone. Yes, the eyes are one of the toughest things to deal with and I do think I need a break or a lighter course load. Thank You, Thank You, Thank You for your support.

jaqeinquotation wrote:

Hey,

I think you will find this forum to be a great support with good information.
I hope you begin to feel better soon. Your family should be ashamed of themselves. I wonder if they have any idea how hurtful and ignorant they were being. Let me stop.
I’m sure many of us can identify with your story in more than just a few ways. My point is that if you were bearing (did I spell that right?) this all alone, you don’t have to anymore (sorry for sounding mushy) but honestly this forum has been great for me and I’m sure I speak for many when I say, many.

I REALLY hope you find a good endo and a good ophthalmologist. When you find them, if you feel that they’re not the right fit, then get a second opinion. I’velearned that I have to continue educating myself, eating well and being my ‘own’ advocate.

I know all about the eyes too, many of us in this forum do. It’s my biggest challenge to date. Even my most hardest trials, most embarrassing moments could never compare. I’m going through the stages right now and it sounds like you are too.

Kudos to you for tackling your Master’s! If you need a break, then break.
I hope the link Kimberly posted is helpful for you.

Take care and thanks for sharing your story:)

[DeeColleen]

in reply to: Living with Graves Disease… #1177501

Shirley;

Yes I am currently on the hunt for that endo and I travel from Albany to NYC whenever I have to see my endo or ophthalmologist, so I don’t use the health services in Albany, unless its an emergency. I’ll definitely read into the Alexis story’s you mentioned. Thanks so much for your advice and welcoming me.

snelsen wrote:

We will be your family who understands, and help you slug through all of this.
Use the search engine, read some of adenure’s posts (Alexis) She also had elevated liver enzymes,and I think you will find her posts encouraging as she traveled down this road..as we all have done.

Not sure about the anemia.

You need:
1. a compassionate and good endocrinologist who treats Graves’ and understand it (and us.)

2. I suggest you try to find a neuro-opthalmologist (as a regular eye doc if they 2know of one, and/or ask your primary (do you have one, it is hard when you are a student, you may be using student health?) Good for you, going to urgent care. It is good to have any eye doc who is familiar with TED (thyroid eye disease) It is very wise, and safe for your eyes, to get a baseline exam. You may be dealing with TED and Graves’ but maybe not.

In the meantime, lots of eye drops if your eyes feel dry.

Your family needs:
to read about, and understand what is happening to you, that it is serious.
Kimberly’s suggestion are a great place to begin.
And, while you are at it. ask family members if they know if any autoimmune disease in the family, and or anyone with Graves’.

ANd, welcome, welcome, welcome. If you read a few posts, and/or use the search engine to find the subjects you are wondering about, it really really really does help to know you are NOT ALONE, AND NOT CRAZY. This is the way we all felt.
Shirley

[DeeColleen]

in reply to: Living with Graves Disease… #1177500

Thanks so much Karen! I actually find myself coming here instead of Facebook. I spend hours trying to find out as much as I can about this ailment. I always ask myself why me; why out of everyone in my family was I plagued with this. I still have not found the answer to this question, but I hope someday I will. Thank you so much for your support.

vanillasky wrote:

Hi! welcome to our support group.

I read your story and wanted to cry. Except for the eye involvement, I also suffer from Graves’ disease and have been for years literally before the proper diagnosis.

It is one horrid disease, that’s why I come here. You will find this internet forum is one that understands and you won’t hear comments about “big eye” girls. We all are in the same boat.

For me, it has been something (because of diagnosis of Hashimotos) a very long road, several endocrinologists and doctors in general to finally figure out what is wrong. They are too quick to diagnose anxiety or depression without checking out tsh. I too, went to the ER twice. Nearly passed out from heat intolerance and palpitations and down to 89 pounds.

You can vent here and don’t worry about putting sentences together. I rant and rave all the time and these people all listen!

Karen

[DeeColleen]

in reply to: Hair loss and muscle stiffness #1177509

I have been experiencing hair loss as well; I actually recently just chopped my hair off because of how bad it was getting. I would speak to your doctor about adding a multivitamin into your diet that contains Biotin; or even taken Biotin alone. Another great way to combat hair loss is to drink tons of water. The more hydrated you are the more hydrated your body is. I’ve seen some improvements since I’ve stuck to a strictly water and tea diet (in terms of fluids). It was hard at first but I weeded out juice and soda consecutively each month. For example: In January for one week I drank nothing but water and tea; in February it increased to two; March three weeks; and April will be four weeks.

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