# Monopause, PMS, Graves, Graves Eye and Me.



## HotGrandma

Uggh, I am so lost. I have been reading this forum on and off for months. I cannot find a thread to fit into, and am getting more confused. My doctor says I have "Graves". I am 50 and was quite active. We had a family chrisis that lasted 2 years that my doctor said brought about my "graves". My symptoms kept fitting into PMS, then menopause, it wasn't until I went into his office in May 2012 and said, "I think I'm gonna die". The typical symptoms listed on this forum: Exhausted, depressed, sleep deprived, cannot tolerate heat, night sweats, headache, crying, but when I started feeling like I was going to black out (pass out) cause my heart was racing and I couldn't breathe, I got his attention. The prior August, I had mentioned the swelling in my eyes. February I started gaining weight for no reason.
labs 2/12
T3 5.3
T4 15.3 (Thyroxine)
T4 4.1 (Free)
I was put on Methimazole 5mg 3x per day and predizone
labs 5/12
T3 5.5
T4 17.9 (Throxine)
Thyroid Stimulating Hormone 3r <0.010L
The immunoglobulins GAM are all within normal ranges.
Then I was put on Methimazole 10mg 3x per day.
No change for labs done in July
Labs scheduled again for October.

Which threads can I find particular information on my situation.
I have no insurance, my husband is permanetely disabled, so I can't afford unnecessary tests and treatments. Challenging arn't I. Thank you in advanced for any information you can give me.


----------



## Octavia

Welcome, HotGrandma!

Here are a couple of sites with good information:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001398/

http://www.mayoclinic.com/health/graves-disease/DS00181 (keep moving through the pages)

http://www.webmd.com/a-to-z-guides/understanding-graves-disease-basics

Also, if you do a search on this forum for graves-related words such as methimazole, graves, grave's, TED, etc., you'll find where others have shared their experiences.

Do you have some specific questions we can try to help answer?

:Hugs:


----------



## HotGrandma

Oh Please and Thank You.

What labs might determmine if I'm on the right meds?

I was referred for "decompression surgery" "lazy eye surgery" and "eye lid lengthening surgery". I understand that my eye's have to be stabilized for 6 months before any surgeries. What are the chances that my eyes could return to normal and these surgeries wouldn't be needed? The doctor couldn't tell me. Even if I had insurance I understand they may not be covered and considered cosmedic. Feel like seeing double all the time and the pressure is making me more tired.

Sounds like you have been through a lot and have had sucess. Congratulations. Thank you for bring there for me.


----------



## Octavia

Okay...these are questions I'm not even going to take a stab at, as I have no personal experience with any of the eye issues. BUT...we have SEVERAL members here who will definitely be able to help!!! I'm sure they'll be along.

Hang in there--the good news is that you have a diagnosis, and you're on the road to recovery now! Stay tuned for more (and better) information from some other members. 

One thing that might help is if you could post your lab's ranges along with your results. For example, your lab results might look something like this:

TSH 0.04 (1.2 - 3.1)
The part in parentheses is your lab's range for normal. Different labs do the testing differently, so they have their own normal ranges. It's extremely helpful to have those along with the patient's results.


----------



## webster2

Welcome, you have come to the right place. Some others with experience in the eye issues will be along and able to answer your questions.  Glad you found this community!


----------



## Andros

HotGrandma said:


> Uggh, I am so lost. I have been reading this forum on and off for months. I cannot find a thread to fit into, and am getting more confused. My doctor says I have "Graves". I am 50 and was quite active. We had a family chrisis that lasted 2 years that my doctor said brought about my "graves". My symptoms kept fitting into PMS, then menopause, it wasn't until I went into his office in May 2012 and said, "I think I'm gonna die". The typical symptoms listed on this forum: Exhausted, depressed, sleep deprived, cannot tolerate heat, night sweats, headache, crying, but when I started feeling like I was going to black out (pass out) cause my heart was racing and I couldn't breathe, I got his attention. The prior August, I had mentioned the swelling in my eyes. February I started gaining weight for no reason.
> labs 2/12
> T3 5.3
> T4 15.3 (Thyroxine)
> T4 4.1 (Free)
> I was put on Methimazole 5mg 3x per day and predizone
> labs 5/12
> T3 5.5
> T4 17.9 (Throxine)
> Thyroid Stimulating Hormone 3r <0.010L
> The immunoglobulins GAM are all within normal ranges.
> Then I was put on Methimazole 10mg 3x per day.
> No change for labs done in July
> Labs scheduled again for October.
> 
> Which threads can I find particular information on my situation.
> I have no insurance, my husband is permanetely disabled, so I can't afford unnecessary tests and treatments. Challenging arn't I. Thank you in advanced for any information you can give me.


Right where you are at is fine and it sounds like you are under good care for this. Hopefully you can get a referral to an ophthalmologist who will work within your budgetary restraints do you can get treatment for your eyes or are you already under the care of one?

I am so sorry you have Graves'; from one Graves' patient to another.


----------



## hyperinnyc

Hi HotGrandma,

I have eye disease, you are not alone up here. I started this journey without insurance as well.

When did your eyes begin to swell/protrude? Can you describe how they look? Mine are swollen around the orbit and when I am really hyper I look shocked, surprised and crazy. The veins are very red and noticeable from the strain of poking out. My vision has deteriorated (along with my social life). I see an opthamologist every 4-6 months and they don't do a damn thing. I've gone through the other sypmtoms you have listed as well.

They optho has not offered me orbital decompression yet - as you mentioned you have to be stable for quite a while. My eyes are stable but the disease is not.

I have been on this site for months now and have yet to get a response about eye disease (except from Andros I think). I posted a question about it about a week ago in the surgery forum and got crickets. As you know it is rare (lucky us). I don't think this goes away on it's own. I've read about it but I think that only happens to people with mild Graves. Mine is raging and it seems like yours is too. The doctors have no answers because they do not know. Apparently, no one cares to study this and find a cure. It just is.

I am scheduled for a TT in a month and I hope this makes my eyes and bloodwork stable so that I can be a candidate for decompression.

Can you go to a clinic for treatment or find a low cost insurance in your area?


----------



## HotGrandma

Octavia said:


> One thing that might help is if you could post your lab's ranges along with your results. For example, your lab results might look something like this:
> 
> TSH 0.04 (1.2 - 3.1)
> The part in parentheses is your lab's range for normal. Different labs do the testing differently, so they have their own normal ranges. It's extremely helpful to have those along with the patient's results.


I had no clue different labs had different markers for range. That's why I need help.

02/10/2012 Free T3 5.3 H (2.3-4.2)
Throxine (T4) 15.3 H (4.1-11.5)
Free T4 2.1 H (0.8-1.3)
05/23/2012 Free T3 5.5 H (2.18-3.98) Hmmm I see
Thyroxine (T4) 17.9 H (4.7-13.3) Here too

Okay. So my script for the next labs at the end of October is for "Thyroid stimulating immunoglobulin level re: grave's disease" While their at it any other labs?

The past week, I haven't felt like passing out from the heart palpitations. Yay.

Will I ever be able to return to excerise, the cardio type? I have been a size 6 for 10 years, worked hard at it. Activity ceased about 2 years ago, and in Feb 2012 I suddenly started gaining weight 10 pounds.


----------



## HotGrandma

hyperinnyc said:


> Hi HotGrandma,
> 
> I have eye disease, you are not alone up here. I started this journey without insurance as well.
> 
> When did your eyes begin to swell/protrude? Can you describe how they look? Mine are swollen around the orbit and when I am really hyper I look shocked, surprised and crazy. The veins are very red and noticeable from the strain of poking out. My vision has deteriorated (along with my social life). I see an opthamologist every 4-6 months and they don't do a damn thing. I've gone through the other sypmtoms you have listed as well.
> 
> They optho has not offered me orbital decompression yet - as you mentioned you have to be stable for quite a while. My eyes are stable but the disease is not.
> 
> I have been on this site for months now and have yet to get a response about eye disease (except from Andros I think). I posted a question about it about a week ago in the surgery forum and got crickets. As you know it is rare (lucky us). I don't think this goes away on it's own. I've read about it but I think that only happens to people with mild Graves. Mine is raging and it seems like yours is too. The doctors have no answers because they do not know. Apparently, no one cares to study this and find a cure. It just is.
> 
> I am scheduled for a TT in a month and I hope this makes my eyes and bloodwork stable so that I can be a candidate for decompression.
> 
> Can you go to a clinic for treatment or find a low cost insurance in your area?


Oh my gosh, this is crazy for you and I.

04/2011 My right eye felt like there there was something in it and turned bright red. Stayed that way for a few weeks. Dr. said it was dry eye. Then the whites started swelling on the bottom under my lid. Then that pocket between the eyebrow and top eye lid looked like a sausage was under it. My eye was constantly watering and burning. In the morning I could usually rub out at least a teaspoon of fluid from the top lid. 07/2011 the left eye started. Again Dr. said Dry eye or allergies or environmental. I knew it wasn't. I insisted with the Dr. that it was something other. Now both eye's were puffed outta my head. I look monsterous. Don't want anyone to look at my eye's cause they look so painful. Then the top eyelid swelled up from my eye lashes to my eyebrow. So much fluid you could touch the lid and everyone could tell how much swelling there was. Again no eye dr., had a clue I saw 7. My eyes watered constantly, I had to clean my glasses every 15 minutes. Even air hurt.

And Yes that crazy Glassy Stare with lots of white showing.

I got an absessed tooth 07/20120and the dentist put me on steroids, the swelling decreased 30%. Talked to my Dr. and told him then he gave me a steroid shot with B-12 and put me on Predisone. Amazingly the swelling has decreased 70%. Tearing and redness also improved 70%. The right eye has almost completely settled back in my head but it now points towards my nose "lazy eye".

I called the popular places that do laser surgery and got a referral to an optomologists that deals with "autoimmune disease that affects the eye" I found an optomologists that is also an MD. He said my eye's were healthy. No glaucoma, no cataracs and that now I wouldn't like anything else he had to say. That the muscles in my eyes had thickened and would require lazy eye surgery to correct. And possibly up to 4 lazy eye surgeries. But first my eyes had to be in their sockets "decompression" surgery, which can cause lazy eye. Followed by eyelid lengthening surgery. The whole ordeal after they were stabalized would be about 18 months. Then again it could correct itself, he said they really didn't have that answer. He also changed the prescription from a -2.25 to -2.75 in that eye. He gave me a script for prism glasses that he said I would hate. The line on the left side of the road passes directly infront of my car then everything on the left of that line also comes right at me. That double vision, but the vision on the left seems transparent. The prisms will correct that fingers crossed to make driving easier.

I hope I have helped you with some answers probably not but sounds like we are dealing with the same thing.


----------



## hyperinnyc

You call it a sausage and eye call it donut eyes lol.

A 70% decrease is great! Did you gain weight from the steroids?

Like you, my eyes are 'healthy' by the doctors' standards so they don't really care that I look hideous. They keep saying that the disease will burn out/stabilize and I'm 16 months in so I am praying it does. But I have never been stable so I hope it is not 2-3 years after stabilizing it will burn out. This has been HELL.

Thanks and please keep me posted!


----------



## HotGrandma

hyperinnyc:

18 months for me. I started gaining weight which is why I wasn't diagnosed right away with graves. PMS and Menopause was the cause. Right. My body always does the oposite of what others do. Give me a sleeping pill and I'm wired for 3 days. Avoiding sugar and limiting carbs for now and tons of water so hopefully I won't gain anymore.

But a customer told me about "Serum Tears". I didn't think I could afford it but they take your emzymes and make a bottle of tears that helped my customer's mom. The Dr. she used was Dr. Forstot. http://corneacolorado.com/ who inturn referred her to http://www.omegaxl.com/?cid=BingOXL0812&s_kwcid=TC-1027854-13074279092-bp-1346513144 She said both combined cured her.

I don't know. I think the methimazole dose is finally working for me. I wore makeup today. I kinda figured I can't fight it just gotta ride it out. Always loved rollercoasters until now, cause this has been a long ride.


----------



## Prairie Rose

Hello,

I am in the same boat. Wish it were a nice, cozy cruise. 

My journey began a year ago last spring. Eye docs, medical docs, for months. Allergies. Uh huh. NOT. 
Finally saw a doc that got me on track with an endo, who in turn sent me to an optho. Optho sent me to a team of 3 neuro-opthos.

The Graves is stable now, so if it continues to remain stable, I could be in for some eye surgeries next year.

I have constant double vision also, with the second visual being see through.

This sucks.


----------



## HotGrandma

I know not to trust the image on the right cause it isn't there. Wednesday night I stepped off the deck cause that image on the right wasn't there and neither was the deck. I skinned my leg halfway from my knee to my foot. All bruised swolllen and that road rash thing.

Does anyone know where I can order glasses with a 15 prism before I break my neck. I had ordered them from glassesusa who kept my money for 3 weeks sent me 3 emails assuring me they were in production then finally called me back stating they only make 10 prisms. Found a place locally that wants $900. Can't afford that specially if I have to pay for lazy eye surgeries. Hate this crap. Seems like everything has to be a fight and no one understands or is willing to investigate. Meanwhile do I have to wait to get back to my life when this is stabalized. Or just walk around like a falling down drunk. And I don't drink.


----------



## Andros

HotGrandma said:


> Oh Please and Thank You.
> 
> What labs might determmine if I'm on the right meds?
> 
> I was referred for "decompression surgery" "lazy eye surgery" and "eye lid lengthening surgery". I understand that my eye's have to be stabilized for 6 months before any surgeries. What are the chances that my eyes could return to normal and these surgeries wouldn't be needed? The doctor couldn't tell me. Even if I had insurance I understand they may not be covered and considered cosmedic. Feel like seeing double all the time and the pressure is making me more tired.
> 
> Sounds like you have been through a lot and have had sucess. Congratulations. Thank you for bring there for me.


That is one reason for waiting. I had a really good surgeon and he insisted I wait 18 months after I completed radiation course to the globes concurrent w/prednisone.

This way when the infiltration has stopped and the condition gets as good as it can get on it's own, the surgical plan can be correctly assessed.

If you have strabisimus now, you can get prisms to paste on to the lens of your glasses to correct that.

Are you seeing an ophthalmologist?


----------



## HotGrandma

Andros:

That's who prescribed the 15 prisms. His office is who can do the 15 prisms for $900. I have spent 20+ hours searching on the net I cannot find a cheaper version. He said the lazy eye surgery is necessary because the muscles have thickened. As soon as you correct the right eye from looking at my nose the left eye dives towards my nose. Did a number of my leg off the deck. Good thing I can still walk on it so I can afford my labs this month.

Where can I get the 15 prisms at an affordable price?


----------



## Prairie Rose

Oh my gosh woman!
I got the stick on prism for $45---from my optho's office!

I wore it exactly ONCE. It made me instantly sick to my stomach. I fare better with the double vision.

Please please please demand a place where the prism costs---well---stick on for $45!


----------



## Andros

HotGrandma said:


> I had no clue different labs had different markers for range. That's why I need help.
> 
> 02/10/2012 Free T3 5.3 H (2.3-4.2)
> Throxine (T4) 15.3 H (4.1-11.5)
> Free T4 2.1 H (0.8-1.3)
> 05/23/2012 Free T3 5.5 H (2.18-3.98) Hmmm I see
> Thyroxine (T4) 17.9 H (4.7-13.3) Here too
> 
> Okay. So my script for the next labs at the end of October is for "Thyroid stimulating immunoglobulin level re: grave's disease" While their at it any other labs?
> 
> The past week, I haven't felt like passing out from the heart palpitations. Yay.
> 
> Will I ever be able to return to excerise, the cardio type? I have been a size 6 for 10 years, worked hard at it. Activity ceased about 2 years ago, and in Feb 2012 I suddenly started gaining weight 10 pounds.


Sans the exercise. Can seriously damage your heart and worse. One of many reasons I opted to get rid of the thyroid. Plus my eyes. As long as the object of the attack was there, it just plain was not going to get better.


----------



## Andros

HotGrandma said:


> Andros:
> 
> That's who prescribed the 15 prisms. His office is who can do the 15 prisms for $900. I have spent 20+ hours searching on the net I cannot find a cheaper version. He said the lazy eye surgery is necessary because the muscles have thickened. As soon as you correct the right eye from looking at my nose the left eye dives towards my nose. Did a number of my leg off the deck. Good thing I can still walk on it so I can afford my labs this month.
> 
> Where can I get the 15 prisms at an affordable price?


That is ridiculous. I have permanent prisms in my lens now and no way do I pay $900 for that.

Hmmmmmmmmmmmm! I will search around as well. There has to be something out there gratis or nearly so.

Dang!

As for the surgery; don't jump into it. I did a lot of research. Many have to keep on having the surgery again and again over the years. Give it a lot of thought and a lot of research and "always" more than one opinion.


----------



## HotGrandma

Finally, found and got the 15 BO stick on prisms over my prescription glasses. I don't have double vision any more YAY, but everything is blurry worse than if I didn't have prescription glasses. My eye's are -2.25 and -2.75 plus reading of +2.00 in each eye. With the prisms I can't see up close at all and cannot read a street sign. When I reach for something its 4" off from where my hand thought it was. Good Grief, this isn't gonna work. If they put the prisms in my glasses they would be 1" thick in each lens.

But, I didn't break my leg. I finally, had to have it checked when my foot swelled to twice its size. Seems prednisone was masking some of the pain and that's why I was able to walk on it for a week. Now, I'm on crutches and a splint but only for 2 weeks with what they called "scraping the muscle off the bone". Will have to pospone my labs till I'm off crutches, too far to walk on these sticks.

What a great disease we all share.


----------



## Prairie Rose

Glad you found the stick on prisms. 
I opted to do without as like you said, the blurr was incredible, plus I got seasick on land. 

Hope your leg is better soon!


----------



## Andros

HotGrandma said:


> Finally, found and got the 15 BO stick on prisms over my prescription glasses. I don't have double vision any more YAY, but everything is blurry worse than if I didn't have prescription glasses. My eye's are -2.25 and -2.75 plus reading of +2.00 in each eye. With the prisms I can't see up close at all and cannot read a street sign. When I reach for something its 4" off from where my hand thought it was. Good Grief, this isn't gonna work. If they put the prisms in my glasses they would be 1" thick in each lens.
> 
> But, I didn't break my leg. I finally, had to have it checked when my foot swelled to twice its size. Seems prednisone was masking some of the pain and that's why I was able to walk on it for a week. Now, I'm on crutches and a splint but only for 2 weeks with what they called "scraping the muscle off the bone". Will have to pospone my labs till I'm off crutches, too far to walk on these sticks.
> 
> What a great disease we all share.


Do you have a recent old pair of glasses that you could use for reading?

Grave's is a devastating disease. I hope you seriously consider just getting your thyroid out and be done w/it. Get on that healing pathway!


----------



## Prairie Rose

Hugs...great big cyber ones.


----------



## dlo1725

You are my long, lost twin! Menopause, PMS, Graves, Graves Eye disease and you.

I feel your pain. Sausage eyes, red, swollen, tearing eyes and all. I was diagnosed with Graves October 2011. Starting on Meth and within 1 month my left eye started to swell. I thought I may have gotten stung on the lid by a mini bee whilst sunbathing on my back deck.

In 1.5 months my right eye started to mimic my left eye. Eyebrows and eyelashes moved closer and closer....a uni-brow-lid. Then the swelling started under my eyes and the clear membrane that covers the eye started to bunch up in the bottom corners.

Went to an optho who also stated I could possibly have allergies. Now I have had allergies since I popped out of the womb and never experienced these issues with my eyes so I moved on to a optho specialist and voila' he said I had TED. He prescribed steroid eye drops which helped with the swelling of the white part of my eyes and reduced grittiness. Did nothing for the sausage or donut swelling. Had to go off the drops after 2 months because they can do damage if used long term. The optho also told to me quit smoking immediately.

The optho then recommended oral steroids which I opted out of because of the side affects. So here I am, like you with no cure and no end in sight for the TED. Some days are better than others with the eyes. I still wonder if the Methomezole is the culprit.

Rumor has it that Selenium, 200 mg a day helps with the healing of the eyes. I take it periodically as it upsets my stomach so I don't know if it truly helps. Other things that supposedly make eyes worse are artificial sweetners and gluten.

Stay strong and keep us updated on your eyes. I have given up hope of being an eye model.


----------



## Andros

dlo1725 said:


> You are my long, lost twin! Menopause, PMS, Graves, Graves Eye disease and you.
> 
> I feel your pain. Sausage eyes, red, swollen, tearing eyes and all. I was diagnosed with Graves October 2011. Starting on Meth and within 1 month my left eye started to swell. I thought I may have gotten stung on the lid by a mini bee whilst sunbathing on my back deck.
> 
> In 1.5 months my right eye started to mimic my left eye. Eyebrows and eyelashes moved closer and closer....a uni-brow-lid. Then the swelling started under my eyes and the clear membrane that covers the eye started to bunch up in the bottom corners.
> 
> Went to an optho who also stated I could possibly have allergies. Now I have had allergies since I popped out of the womb and never experienced these issues with my eyes so I moved on to a optho specialist and voila' he said I had TED. He prescribed steroid eye drops which helped with the swelling of the white part of my eyes and reduced grittiness. Did nothing for the sausage or donut swelling. Had to go off the drops after 2 months because they can do damage if used long term. The optho also told to me quit smoking immediately.
> 
> The optho then recommended oral steroids which I opted out of because of the side affects. So here I am, like you with no cure and no end in sight for the TED. Some days are better than others with the eyes. I still wonder if the Methomezole is the culprit.
> 
> Rumor has it that Selenium, 200 mg a day helps with the healing of the eyes. I take it periodically as it upsets my stomach so I don't know if it truly helps. Other things that supposedly make eyes worse are artificial sweetners and gluten.
> 
> Stay strong and keep us updated on your eyes. I have given up hope of being an eye model.


So, are you still on the Methimazole? This eye thing won't stop as long as you still have your thyroid.

I had the thyroid zapped, then had prednisone concurrent with 2000 RADS to the eyes 3 times a week for 6 weeks. That stopped it in it's tracks. Then I had to wait 18 months for orbital decompressions. All that is behind me now; thankfully!

And yes, I did have steroid induced Cushing's but in the grand scheme of things, I made a very good decision.

And I no longer suffer from Cushing's. It took time but all is well now.


----------



## dlo1725

Andros:

Yes, I am still taking the Methimazole; 10 mg a day. It is strange to me that once I started taking this medication last October my eye issues kicked in.

I has hyperthyroidism long before I was diagnosed with the disease. My blood tests at my physical exam were done in July where my T3 and T4 levels were 3x higher than normal. Didn't see and Endo until beginning of September and started Meth, 30 mg a day in October. The eye issue then started.

I sometimes wonder if I had done nothing the TED would not have happened. I lived with all of the symptoms of Graves for years and just never went to the doctor. The death of a coworker made me think I should have a physical and that is when my thyroid was tested.

I never go to the doctor as they push a pill for every little issue you have. So I went to the doctor, they pushed the meds and I haven't felt right since. The only positive is that I sleep better and my heart palps have diminished.


----------



## Andros

dlo1725 said:


> Andros:
> 
> Yes, I am still taking the Methimazole; 10 mg a day. It is strange to me that once I started taking this medication last October my eye issues kicked in.
> 
> I has hyperthyroidism long before I was diagnosed with the disease. My blood tests at my physical exam were done in July where my T3 and T4 levels were 3x higher than normal. Didn't see and Endo until beginning of September and started Meth, 30 mg a day in October. The eye issue then started.
> 
> I sometimes wonder if I had done nothing the TED would not have happened. I lived with all of the symptoms of Graves for years and just never went to the doctor. The death of a coworker made me think I should have a physical and that is when my thyroid was tested.
> 
> I never go to the doctor as they push a pill for every little issue you have. So I went to the doctor, they pushed the meds and I haven't felt right since. The only positive is that I sleep better and my heart palps have diminished.


It would have happened but perhaps not so quickly. A lot of things trigger the antibodies to TED/GED. Anti-thyroid meds, surgery....................any severe stress like loss of a pet or loved one, childbirth etc..

I am sorry but do know that I and others who have had the same situation will help you all we can.

What is being done for your eyes?


----------



## Prairie Rose

Dlo,

In my case, the TED is what had me running to eye docs and medical docs. I was told by a few docs that it was 'allergies' bothering my eyes.

Finally getting connected with the right doctor got me on methimazole. I was told that the methi could hopefully get me into a remission, thus easing the TED symptoms and the Graves symptoms. Yes on all counts--it has.

Eased is the key word. Cure--there is none.

Everything I have been told by docs and read on my own seems to match up on one thing: if TED is going to happen, it is going to happen.

So I guess what I am saying, in a nutshell, is that the TED has probably been brewing along for you already and the drugs most likely had nothing to do with it. This TED stuff seems to have to 'burn itself out'.

There is very little that they can do for it.

Treat with thyroid meds, run a course or two of steroids to try to reduce swelling, in severe cases do the eye radiation, like with Andros, then further down the line decompression surgeries if necessary.



dlo1725 said:


> Andros:
> 
> Yes, I am still taking the Methimazole; 10 mg a day. It is strange to me that once I started taking this medication last October my eye issues kicked in.
> 
> I has hyperthyroidism long before I was diagnosed with the disease. My blood tests at my physical exam were done in July where my T3 and T4 levels were 3x higher than normal. Didn't see and Endo until beginning of September and started Meth, 30 mg a day in October. The eye issue then started.
> 
> I sometimes wonder if I had done nothing the TED would not have happened. I lived with all of the symptoms of Graves for years and just never went to the doctor. The death of a coworker made me think I should have a physical and that is when my thyroid was tested.
> 
> I never go to the doctor as they push a pill for every little issue you have. So I went to the doctor, they pushed the meds and I haven't felt right since. The only positive is that I sleep better and my heart palps have diminished.


----------



## HotGrandma

Am I the first.

I searched this sight for what my doctor prescribed for GED of "trental allopurinol nicotinamide" and found nothing.

Here is a link http://www.expertmapper.com/go/graves+ophthalmopathy/-gpearth/-vTbAdv/-e151-175

I am so desperate I will do anything to make this go away!!!


----------



## HotGrandma

Got a dumb question, but I cannot find the answer. I see my Doc again next week. We are having problems getting stable. Duh right. Here's my question: He say's Methimazole has to be taken 3x per day. Is anyone on 2x per day? Is this correct, cause right now I am cutting 10's and 5's in half to get 7.5 per dose 3x per day. I'm thinking 10mg 2x per day would work, based on how I feel. Like Crapola


----------



## webster2

I was on 3x day. I hope you'll get some help to feel better soon.


----------



## StormFinch

My current Doc (Endo surgeon) has me on it twice per day. The last one had me on 3X but told me I could take it 2X because I was having a really hard time remembering it in the middle of the day. If you can take it twice a day as opposed to three times is really going to depend on your labs I think. Both dosage schedules had the same effect with me, but everyone is of course different and your mileage may vary.

Good luck, I know stable can be a major pain.


----------



## HotGrandma

StormFinch said:


> My current Doc (Endo surgeon) has me on it twice per day. The last one had me on 3X but told me I could take it 2X because I was having a really hard time remembering it in the middle of the day. If you can take it twice a day as opposed to three times is really going to depend on your labs I think. Both dosage schedules had the same effect with me, but everyone is of course different and your mileage may vary.
> 
> Good luck, I know stable can be a major pain.


Thank you!!!! Storm

That mid day pill is hard for me to remember too. Right now I'm so hypo that I don't have to shave my legs cause its not growing. Strange if I miss a dose like I did yesterday the heart palps are bad for the next 30 hours. Labs are due this week. Will be intersting to see what they are with regards to the increased pain in my shoulders arms and hands to relation to my levels.

Any Who, have you in my thoughts and prayers for 12/06. Hope everything goes well for you and you recover quickly. hugs3


----------



## StormFinch

HotGrandma said:


> Thank you!!!! Storm
> 
> That mid day pill is hard for me to remember too. Right now I'm so hypo that I don't have to shave my legs cause its not growing. Strange if I miss a dose like I did yesterday the heart palps are bad for the next 30 hours. Labs are due this week. Will be intersting to see what they are with regards to the increased pain in my shoulders arms and hands to relation to my levels.
> 
> Any Who, have you in my thoughts and prayers for 12/06. Hope everything goes well for you and you recover quickly. hugs3


Thanks so much! hugs1

Let us know how the labs go!


----------



## HotGrandma

02/11/2012	T3 Free	5.3	(H)	(2.3-4.2)
T4 15.3	(H)	(4.1-11.5) 5 mg of Methimazole

05/30/2012	T3 Free	5.5	(H)	(2.18-3.98) 10 mg of Methimazole
T4 17.9	(H)	(4.70-13.3)

10/24/2012	T3 Free	1.5	(L)	(2.18-3.98) 7.5mg of Methimazole
T4 2.3	(L)	(4.70-13.3)

11/28/2012	T3 Free	2.08	(L)	(2.18-3.98) Back to 5 mg 3x per day
T4 Free	0.41	(L)	(0.76-1.46)

This is so wrong Doc threw a curve ball of doing a T4 Free so I have no idea how to compare.

Saw Doc Monday, now I also have Graves Myopathy (there is soo much pain in my neck, arms and hands) that I can barely use my hands. My BP was 136/100 cause of the pain. Plus my sugar levels are going up and down like my thyroid levels. He didn't want to take me off prednisone but did lower the dose to 5mg 2x per day. Doc wants labs again in 2 weeks. Doesn't want to take the risk of going hyper again. I am constantly feeling dizzy with a queezy stomach, weakness all over my whole body, with my heart racing, but it only measures 96 bmp. My hair's falling out again, but I don't have to shave my legs. And I still got my period. Uggh, all I want to do is cry, specially since I can't sleep. Anyone have any Idea how much longer based on my labs and Methimazole dosage till I feel better and can go for a simple walk?


----------



## Andros

dlo1725 said:


> Andros:
> 
> Yes, I am still taking the Methimazole; 10 mg a day. It is strange to me that once I started taking this medication last October my eye issues kicked in.
> 
> I has hyperthyroidism long before I was diagnosed with the disease. My blood tests at my physical exam were done in July where my T3 and T4 levels were 3x higher than normal. Didn't see and Endo until beginning of September and started Meth, 30 mg a day in October. The eye issue then started.
> 
> I sometimes wonder if I had done nothing the TED would not have happened. I lived with all of the symptoms of Graves for years and just never went to the doctor. The death of a coworker made me think I should have a physical and that is when my thyroid was tested.
> 
> I never go to the doctor as they push a pill for every little issue you have. So I went to the doctor, they pushed the meds and I haven't felt right since. The only positive is that I sleep better and my heart palps have diminished.


Antithyroid meds sometimes do trigger GED. You just never know what will do that.

I must say though that you had to do something as all your internal organs can be and are damaged by untreated hyper.

You may wish to seriously consider surgical removal (ablation)of the thyroid. And I do hope you are seeing a Board Certified Ophthalmologist?


----------



## HotGrandma

HotGrandma said:


> 02/11/2012	T3 Free	5.3	(H)	(2.3-4.2)
> T4 15.3	(H)	(4.1-11.5) 5 mg of Methimazole
> 
> 05/30/2012	T3 Free	5.5	(H)	(2.18-3.98) 10 mg of Methimazole
> T4 17.9	(H)	(4.70-13.3)
> 
> 10/24/2012	T3 Free	1.5	(L)	(2.18-3.98) 7.5mg of Methimazole
> T4 2.3	(L)	(4.70-13.3)
> 
> 11/28/2012	T3 Free	2.08	(L)	(2.18-3.98) Back to 5 mg 3x per day
> T4 Free	0.41	(L)	(0.76-1.46)
> 
> This is so wrong Doc threw a curve ball of doing a T4 Free so I have no idea how to compare.
> 
> Saw Doc Monday, now I also have Graves Myopathy (there is soo much pain in my neck, arms and hands) that I can barely use my hands. My BP was 136/100 cause of the pain. Plus my sugar levels are going up and down like my thyroid levels. He didn't want to take me off prednisone but did lower the dose to 5mg 2x per day. Doc wants labs again in 2 weeks. Doesn't want to take the risk of going hyper again. I am constantly feeling dizzy with a queezy stomach, weakness all over my whole body, with my heart racing, but it only measures 96 bmp. My hair's falling out again, but I don't have to shave my legs. And I still got my period. Uggh, all I want to do is cry, specially since I can't sleep. Anyone have any Idea how much longer based on my labs and Methimazole dosage till I feel better and can go for a simple walk?


Can anyone tell me if this incredible pain is cause I'm hypo now if so based on my labs how much longer before I feel better?


----------



## HotGrandma

Could someone PLEASE comment on my labs or what's going on with me how I should be feeling etc. My husband says that I'm just a Hypochondriac and that he's sure by now that the Doc has things evened out and I don't have to have labe done or see the Doc in two weeks. His attitude is pushing me off a cliff. I have no other support or help except this Forum and my Doc. PLEASE cause I've never been a complainer.


----------



## jenny v

I think you are definitely hypo, so I'm kind of surprised he's still got you on a fairly high dose of Methimazole (I'm assuming that's what you're still on when you say "Back to 5 mg 3x per day"?). It doesn't seem like you have been able to find any kind of stability for the last few months, have they discussed RAI ablation or surgery as options? Also, have they brought up beta blockers for your heart issues? I'm hypo and have also been hyper in the past and I have heart issues (racing heart, pounding, skipping, etc.) with both and beta blockers have been a Godsend.

And I'm just going to vent a little, but I get so mad when people complain about dealing with thyroid sufferers or judge us for symptoms they have no idea about. I wouldn't wish my thyroid problems on anyone and I get a little frustrated with myself sometimes when things aren't healing as quickly as I want them to, but anyone who has never had thyroid problems should just keep their darn mouths shut!


----------



## Sandbar

HotGrandma said:


> 10/24/2012 T3 Free 1.5 (L) (2.18-3.98) 7.5mg of Methimazole
> T4 2.3 (L) (4.70-13.3)
> 
> 11/28/2012	T3 Free	2.08	(L)	(2.18-3.98) Back to 5 mg 3x per day
> T4 Free	0.41	(L)	(0.76-1.46)


Hi HotGrandma, yes, with these 11/28 numbers you are definitely hypo and your methimazole dosage should have been _halved _immediately. I don't understand since you were hypo on your labs on 10/24 why your methimazole dosage was _raised _on the 11/28 labs? The reason you have miserable joint pain is not because of Graves (most likely) but because you are hypo and experiencing falling thyroid levels. Do you have the option to seek a second opinion? There is no reason on earth you should have to be suffering like this other than the obvious mismanagement of your medication - stand up with whatever strength you've got left and demand better treatment!!!! (forgive my strong statements, I just get pretty riled about all this stuff - the amount of unnecessary suffering due to mismanagement of this disease boggles my mind)

Edited to add: I too experience excruciating joint pain when my levels go to low while still within the normal range, You've been below the cutoff for the normal range since 10/24 at least so it's no wonder. Hang in there!


----------



## HotGrandma

Started reading "Thyroid for Dummies" thought it might be appropriate since it seems like my brain is a marshmallow. Really ticking me off that I can't spell (reading over my previous posts). Anyway I have started putting some pieces together on why I kept being diagnosed as Menopausal and hypo when I was hyper. For instance a symptom of Menopause is dry skin same symptom as hypo. So as I continue to treat the Graves, Menopause keeps rearing its ugly head and confusing the symptoms between hyper and hypo.

Last month Doc put me in charge of how I was feeling and to get labs and make an appointment with him when I felt more hypo or hyper. So at hyper my period was lighter and shorter classic but also classis for Menopuse. When hypo I thought my period was gonna kill me longer and heavier. Clasic of Menopause. Body temperature changes, dry skin, heart palps, etc., all thyroid symptoms cross between hyper and hypo expecially when Menopause symptoms seem to counter the thyroid symptoms or add to them to make them worse. Geez. Has any one else dealt with this cross over between the three? Anyone read the book about Menopause and thyroid? Curious because I don't want to fill my marshmallow with junk that's wrong. Whoops I'm rambling which caused that? Graves, hyper, hypo or menopause.


----------



## webster2

No, I never read either book but I kept going to the doctor for over 2 years with symptoms, only to be told it was menopause....I had a history of hyperthyroid too. Maybe the doctors should be reading those books!


----------



## Pamala

This is a wonderful thread. I am sorry so many of you are suffering. It is wonderful to me because I am not alone!

Stay strong ladies!


----------



## Gwen1

HotGrandma said:


> Started reading "Thyroid for Dummies" thought it might be appropriate since it seems like my brain is a marshmallow. Really ticking me off that I can't spell (reading over my previous posts). Anyway I have started putting some pieces together on why I kept being diagnosed as Menopausal and hypo when I was hyper. For instance a symptom of Menopause is dry skin same symptom as hypo. So as I continue to treat the Graves, Menopause keeps rearing its ugly head and confusing the symptoms between hyper and hypo.
> 
> Last month Doc put me in charge of how I was feeling and to get labs and make an appointment with him when I felt more hypo or hyper. So at hyper my period was lighter and shorter classic but also classis for Menopuse. When hypo I thought my period was gonna kill me longer and heavier. Clasic of Menopause. Body temperature changes, dry skin, heart palps, etc., all thyroid symptoms cross between hyper and hypo expecially when Menopause symptoms seem to counter the thyroid symptoms or add to them to make them worse. Geez. Has any one else dealt with this cross over between the three? Anyone read the book about Menopause and thyroid? Curious because I don't want to fill my marshmallow with junk that's wrong. Whoops I'm rambling which caused that? Graves, hyper, hypo or menopause.


Hi HotGrandma, I was coming down from hyper last year from being over medicated on thyroid hormone and I had the same issues of not knowing what was hyper, meno, or hypo. So yes, I dealt with the crossover between the 3 of those. I did not know what was from what. I'm 51, same age as you. I've been on the right dose of thyroid replacement for 6 months now and everything is back to normal. I do not have Graves. I have Hashi's which causes hypo. I was just overmedicated- went from 125 down to 88 mcg. of Levoxyl. It was quite a ride being overmedicated and Hyper. I also went hypo for a few months trying to find the dose I needed to be on- working with my endo. So I know what you've been going through. It's a rough ride.


----------



## HotGrandma

Sorry I have to vent. Please cover your ears cause I'm getting ugly. 
Eyes too specially with the mean look my eyes now have as a result of Graves.

Doc said it was okay to go 6-8 weeks between labs right now. Typically I have labs drawn on tues and see him of thurs. Same routene for the past year.

So I had lads yesterday called to get my results today like always and am told that they didn't receive them until 2:00 today so they will not be done till 2:00 tomorrow. My appointment is at 7:30 am not going to do me any good. Too late to cancell my apt cause someone didn't turn my labs in yesterday or process my labs yet.

I am so frusterated specially since I have to pay for those labs and doctor visits out of my pocket. Now that office person at Doc's will get the labs and send me a letter two weeks later if they're not in range. Or I'll have to throw an ugly fit to get a copy a week from now or longer, and I'll have to call her at least 5 times. That's not going to help diagnose my meds. So what it boils down to is someone just cost me money and time and I am not in control of my care. I ended up in hypo hell from this healthcare way of doing things. I swear and I am loudly. Oooh I am so damn mad. Is this graves rage, menopause or a paying customer who didn't get what they paid for.


----------



## dfloy4

I feel for you. Is it possible you actually were going through menopause at the same time as the Graves? That could explain the PMS effect. Because that's what happened to me. Better to have those night sweats at the same time than to have them separately. I have had Graves & Graves eye disease for 10 years. I was told that your eyes can cure themselves. For a long time, I had one eye going in one direction & the other in another. You should have seen me try to play pool. It took several years, but they got better. Except for when I get real tired. Then that one eye starts looking the other way again & they swell up & I look like a frog. I'm having decompression surgery in a few months & I'm very nervous about it. But I have been convinced that it is needed. The longer you have this eye disease, the more damage you have to the tissue around it. And there's is always the worry about damage to your oiptic nerve. I would have the surgery if I were you. The depression & weight gain sound more like hypothyroidism. It's possible to go back & forth, but only if there is something other than Graves wrong with your thyroid. I hate to say this, but from what you have said, I'm not impressed with your doctor. Is he a specialist? Try to find one. What state do you live in? Some states will pick up the tab for your medical bills. Is your husband a veteran? If so, maybe the VA will help. Have you made any calls to local government agencies? Or to local hospitals. Keep looking. There just has to be someone out there who will help. Run an ad on Craigslist & ask for help. Or where to find help. It sounds like both your diseases need better attention than you're getting. Another thing. If you're a smoker (like me - don't tell anyone) the chemicals in cigarettes could be preventing your eyes from getting better. Good luck to you. It will get better. Try to keep a positive attitude, and if you are depressed because of all this, medications do help!


----------



## HotGrandma

Dlfooy4
Just to clarify my Doc is awesome its not his fault he is surrounded by incompetent idiots. When I was extremely hypo I heard him yell at his staff that I was instructed to call him if I developed any more symptoms and he'd better get the call immediately not days later. Here's a link of something you should try for the swelling in your eyes http://www.thyroidboards.com/showthread.php?t=7005. In your link on this forum I asked what your levels are you responded that they were on the low end. What are the exact numbers with ranges. My eyes are cold and I attribute it to the allopurinol in that link. If you're not optimal than what Andros stated about antibiodies are possibly causing your eyes to still be a mess. And yes my husband is VA but they keep labeling his disability as "temporary" until they use the word perminant I don't qualify for medical.


----------



## HotGrandma

That Lab is open 24/7 and I lit em up every two hours all night long. Fianlly @4:30 this morning I had my labs.

I had read that a return of TSH could mean remission is possible. 05/30/2012 TSH was 0.01. Boy howdy did my TSH return its now 15.9. Yeah I don't think this level is what they were talking about. Ugggh


----------



## Octavia

So...how did your appointment go?


----------



## HotGrandma

T3 Free 2.5 (2.18-3.98) T4 Free 1.0 (0.76-1.46) Labs for January were about the same. So Doc flet I was on the right track since the labs were in range. I didnt.

So this lab I ordered TSH 15.9 (0.36-3.74) With the TSH he now say's I am "clinically hypo" Okay so now he gets it that just cause T3 Free and T4 Free is in normal range that I should be good. Phew, that was a relief. I do feel bad that I manipulated his thinking using the TSH lab to prove I still feel like crap. Doc agreed that i should feel like crap.

We are knocking the Methimazole to 1.25 mg 3 times per day. Lab in two weeks with the decrease dose. Then lab four weeks after that with TSH on this lab. If I am still under the top 75% range on T3 and T4 Frees or if on the second lab TSH is still high. WE GET TO STOP Methimazole. Been 13 months on Methimazole now. From what I have read I have a better chance of remission and staying there for persons who have been on Methimazole 8 months or longer.

All I can do is keep crossing body parts. Thanks Octabia.


----------



## jenny v

Dang, lady, you are definitely hypo now!! Heck, back in January your FT3 and FT4 showed you as hypo, too. I say manipulate away with this doctor if it gets you results!


----------



## HotGrandma

uh oh, I am coming down with a cold. I never get sick. Is this from being hypo?


----------



## HotGrandma

New Labs Methamozole was reduced to 1.25mg 3 times per day
04/11/2013 Free T3 2.4 (2.18-3.98) Free T4 0.9 ((0.76-1.46). Really no change with the dose reduction of half. I am still in Hypo Land.

It's like trying to get pregnant, month after month you test and hope.

Any Suggestions on what I should do?


----------

