[Anonymous]

#1162851

Yep, that’s how this disease works…you never can be absolutely sure one
day to the next how things will be. After 6 months on treatment, more days
are good than bad. I just pray every morning before I get up that today’ll be a good
one. When I make plans, I make sure that whoever I’ve made them with
knows that they are subject to change due to my health.

I hope your first Endo appt. goes well. Bring a list of questions to
ask him.

It would be a good idea for you to start keeping a symptom journal. You can
plot your progress on the meds and also how your monthly cycles effect things.
It helps alot. When you’ve really improved, you can see from whence you’ve come and
be all the more thankful. When things aren’t so great, you can pinpoint things
that might trigger symptoms (PMS, dietary changes, etc).

Fill us in when you get back from the Endo! Glynis

[Anonymous]

#1056227

Yesterday was soooooo great! I almost felt like my old self — no shaking, eyes weren’t griddy, and my brain worked great and my words came out like they were meant to.

Today isn’t starting out so good… Is that they way this disease works? How can you plan your life never knowing? Tomorrow is my first endo visit- maybe I’ll ask him that

Jeannette, I’m new to the BB so I don’t know for certain who you are, but I really love what you have to say. Thanks.

Karylinn aka, ‘late for work’

[Anonymous]

#1162852

Karylinn, Glad to hear you had a good day. I’ve been on PTU for 5 weeks now, and I am feeling almost normal again. Blood levels of free t-3 are only a little high. Memory and concentration has come back. No shakes. You’ll soon be back to your old self. Personally, I am hoping to be even better than my old self. Monday I started back on my walking-two-miles-a day regime, and it has really helped to clear me head and get outside and away from the computer in the afternoons. I mi My advice is: plan to have a good day always, because I firmly believe in the power of our thoughts and expectations coloring our experience. Then if you have to make small adjustments, do what you have to do to take care of the current reality, all the while focusing on the condition you DO want, which is good health! Let us know what the endo says. Love and blessings to you, S

[Anonymous]

#1162853

Sharon,

Thanks for the positive thoughts. I’m usually a very positive person – so your post helped re-ground me. I hope that all the positive energy you give you comes back to you 10 fold.

Karylinn

[Anonymous]

#1162854

Approximately 10 days ago I was feeling great – literally running up steps. Within a week, I was in severe pain in my shoulder, fingers, knees, thighs. I had pain in my finger joints that would wake me up, but that was when I was hyper. My numbers are leaning towards hypo now. The pain in my fingers move from a joint on one finger to a joint on another and it wakes me out of a dead sleep. Last night I was awake for a couple of hours – hurting. It seems like I am having the same type of pain in hypo that I had in hyper, except that it hurts more now. My feet seem to hurt all day now. At first they only hurt in the morning because they were swollen.

Just sharing. Don’t want to complain. I’m still very thankful that I know what is wrong and that eventually I will be better. I was hoping by spring, but I’ll accept whatever I get.

Jake – loved your poem “The Gift”. It makes a person think.

[Anonymous]

#1162855

Once you get your Synthroid levels under control you will feel better. There is a better day – never thought I would say that after 2-1/2 grueling years with this. But, I am able to exercise now (for last 2 yrs), lost 30 lbs., and only have a day or two in a week that is more sluggish – mostly due to stress – doing too much and not getting enough rest. It takes some mental adjustment to live with a chronic illness. I even had therapy to help me express my frustrations and anxieties. I am so grateful for this BB and the constant commitment of the facilitators that are so skilled with helping us. Keep on writing and reading – sometimes it is the only outlet (I can’t always express my stuff with my family). Joy in SoGA

[Anonymous]

#1162856

I haven’t had my RAI yet. Scheduled for mid-January 2007. I have been taking Methimazole since January 2006. Also take Toprol XL. Suffered with a-fib. My muscles hurt in my thighs, like pinches. I know I need to walk more distance at one time – I could park farther away from the office and walk in, but I am afraid I may not be able to make it back at the end of the day. Some evenings it is a struggle. And the foot pain – Ouch! I walk a lot during the day back and forth throughout the building, but it is only for a few minutes at a time. And the shoulder pain, it is in my right shoulder. I use the mouse a lot during the day, and it only makes it worse.

And, even though I am starting to regain my concentration, on most days, I just don’t perform at the capacity that I use to. My boss is young and I am sure it is hard for him to completely understand, even though he tries.

It is good to have this site to communicate with people who understand.

Thanks and I hope all is well with you.

[Anonymous]

#1162857

I wrote “The Gift” Years ago after I was finally leveled out in my meds. I will try to find it and post it again for the new folks.

I just tried to show even when we feel our worst we can look at another and thank the Creator for our lives.

OK Found it. It is from my book “The Red Man In Me” Copyright 2001

The Gift

The Great Spirit said, “I am going to give you a tremendous gift.”
“I hope I am worthy of this gift,” I replied.
The Great Spirit said he would inflict me with a disease
“Disease as a gift?” I asked? I could not fathom illness as a gift

“What you do with this gift depends on you,” he said
You can treat it as a curse, or accept it for what it is
You can lament or make the best of it. It is up to you
What you do and how you act will prove if you are a Warrior”

He struck me with Polio and paralyzed my legs.
Doctor’s said I will never walk again
But I did. I learned to walk and run
I thank the Great Spirit every day
He taught me that those without legs are worthy

He struck me with Graves’ disease
Life was pure hell for a few years.
Loss of memory, pain, and tremors
But I got better

I learned that by helping others with Graves’
I could help to heal myself.
I learned that helping others is a worthy cause
I learned I had the strength to keep going
Even when I had no strength left
I learned that as bad off as I felt there was another
Who was worse off than I who I could help

I learned that instead of reaching for a helping hand
I had become the hand that was reached for
Instead of being in the abyss I was on the edge
Helping others out of the void

The Great Spirit said, “I will take your vision”
My eyes bulged and pained
Vision started to dim and colors were lost
My eyes went askew and looked in different directions
But I got better

Sixteen eye surgeries
Much pain and discomfort
Orbital Radiation on my eyes left me with cataracts
But I got better.

I learned that even with no sight I was worthy
I saw with my mind what my eyes could no longer
I learned that by helping other’s with eye problems
I helped myself.

I am a Warrior. I no longer look at a person the same
I see what is inside them not the shell of the body
Instead of seeing a person in a wheelchair
I see a person who was given a gift.

I see the Great Spirit gave them a gift too I admire their strength
I admire their courage
I admire their will

I pay homage to a fellow Warrior as we pass by
I thank the Great Spirit for these gifts
For they made me the man I have become

Jake George
Facilitator

[Anonymous]

#1162858

Mawmaw, I think you should talk with your doctor about these symptoms. For one thing, they may not be associated with the Graves at all. These are not typical symptoms. Sometimes folks on the antithyroid drugs get arthritis-like symptoms, and it is due to an adverse drug reaction. There is another autoimmune that can cause symptoms like this, too. At least one. The only way to find out what is going on is to get your doctor “brainstorming.”

Good luck,
Bobbi — NGDF Online Facilitator

[Anonymous]

#1162859

Hi,
It makes me feel sad to hear how you’re suffering from your thyroid condition. I was diagnosed this past July with a form of Graves’ Disease that primarily seems to be affecting my left eye, but now I fear that my right eye is becoming affected also. I am 65 years old and am still working part-time. I feel very embarrassed re the appearance of my eyes — somedays the burning, itching, etc. is almost unbearable. I have been to an opthalmologist who advised almost continuous use of eye moisturizing drops or gel. The drops don’t really help and the gel affects my vision for about 15 minutes or so. I’ve noticed that my energy level is low and my heart rate is starting to increase. I’m in the process of finding a new Internal Medical MD as I just wasn’t satisfied with my last exam. I felt like I was being “brushed off”. I know there should be co-ordination between the MDs. I’m on a very low dose of Tapazole 5 mg q day. My last TSH was 0.02. Right now I’m not a candidate for RAI. I must admit to being apprehensive. It’s hard enough getting older with normal changes without having to cope with this. I know it could be much worse, so don’t mean to complain. It just feels good to have someone to talk to. Your thoughts would be appreciated. Nina

[Anonymous]

#1162860

Nina,

Sorry to hear about the problems with your eyes. I haven’t had anything more than increased tearing in the morning and my vision is a little more blurry. I have started looking for a good eye doctor that specializes in Graves disease in case I start having trouble down the road after RAI. I am 47 years old and have missed over 5 months this year from work. I was diagnosed with Graves in January and I also had a-fib (increased heart rate). I started having problems with energy levels in 2005.

Overall I am feeling much better. My energy levels have increased. I do suffer with pain, sometimes during the day, sometimes at night effecting my sleep, but I will adjust and learn to deal with that if necessary. I live alone, so I do not have to worry about taking care of others if my energy is down. Just pop something into the microwave for dinner then off to bed. I am also in full blown surgically induced menopause so needless to say I am up and down with my emotions continuously. It makes it hard to determine whether the mood swings are from thyroid or menopause.

I would suggest finding a good endocrinologist – it’s their specialty to deal with diseases of the endocrine system. I am very pleased with mine. I do believe that the doctors do need to talk more to each other. In the beginning I had a GP, Cardiologist, and Endo and they sometimes didn’t agree. That was very scary. In the beginning my mind was so foggy I couldn’t understand what they were telling me. I would take a friend in with me to listen, and I always take my questions in with me on a 3×5 index card. They now know that I will ask pointed questions and write down the answers. They deal really well with this.

I do believe that I will get better – thanks to this bulletin board forum. I have been reading all the past bulletins and have learned so much. Thanks to all of you for sharing. I have learned, the hard way, that you can’t share as well with those that don’t have it, they just can’t understand.

Nina – I’ll be praying for you.

[Anonymous]

#1162861

Bobbi, I am taking Methimazole, .5 each day. When I started out taking 40 mgs a day, I was allergic and had to take Zyrtec for hives. When I got down to around 20 mgs a day I came off Zyrtec because I was very sleepy and I was going back to work. No more problem with hives – only some itching. I said something to the Endo about the pain in my shoulder and she said it was not related. Said I could talk to my GP. I saw my GP last Friday and told her about it. She looked at the swelling on my finger and was not concerned, thought it was related to the thyroid. I went on the web and looked up the different auto immune diseases and could not figure out which one you thought it might be. Rheumatoid arthritis affects both sides of your body symetrically – I only have the problems on one side of my body in my upper extremities and both sides in my legs/feet. I checked out Lupus and MS. I just don’t fit into those categories. Can you tell me which one you were thinking about?

I did a search on “joint pain” in the old bulletins and there were a lot of people that had similar problems with pain. I understand why I had it during hyper – I lost the majority of muscle mass in my arms and legs. I understand my legs hurting now – I am using them more and rebuilding the muscles in my thighs plus I have gained approx. 20 lbs. I don’t understand the pain in my feet, right shoulder, or the moving pain/swelling in my left finger joints. It is so bad that it wakes me up – not every night, but most.

[Anonymous]

#1162862

Excatly what are you experiencing with your hands and feet? Did you talk to your doctor about carpal tunnel? I don’t think though that swelling is part of carpal tunnel. Do you feel tingling in them? Shart shooting pains? There is one problem that I’ve had for a long time, that is neuropthy in both my hands and feet. When it first started I did have a lot of pain in them but I wouldn’t call it joint pain.

It seems like many of us do have joint pain, I’ve had it for years, but mostly in my hips. On bad days it seems like every joint hurts. Both my PCP and my endo have told me it was related to Graves. My legs have also never gotten over the weakness in them.

Diane B On-Line Facilitator

[Anonymous]

#1162863

Hi, mawmaw: It’s easy to offer guesses, but I’m not a doctor so they’d be worthless. My point was that joint pain like you described is not a typical symptom of hyperthyroidism/Graves. All too often, we blame everything on the thyroid, but other conditions can and do occur which can be treated in addition. Even some things that “look” like thyroid can sometimes be caused by somthing else. There’s no reason to suffer, thinking its thyroid, if it isn’t. And if it is your thyroid issues, then the pain needs to be addressed somehow by one of your doctors. That’s all I meant.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1162864

Diane,
I am not having any tingling in my hands. The pain is not shooting in my one finger or even in my back – it is more like stabbing. It wakes me out of a dead sleep. I have had carpal tunnel releases in both my hands so I know the symptoms for that. I looked up the many different neuropathy’s on the web. One of them, distal median nerve dysfunction, does say that it could be caused by hypothyroidism and I am currently begining to go hypo. Sorry if I sounded a little testy. I only get a good night of sleep, with only a couple of wake-ups, 3-4 nights a week. My PCP does not want to add anything else to my meds until after I have RAI if I can avoid it. I see my chiropractor again next week and I’ll get him to check out everything real closely to make sure there is nothing out of alignment, but he didn’t find anything a month ago when I went. I actually feel really good in my lower back problem.

Thanks for listening.

[Author]

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