[knitlit]

in reply to: Questions about "Mild Graves" #1065696

When I was first diagnosed, I actually didn’t know I was having any problems. NO rapid heartbeat that I was aware of, felt good, but my BP/resting rate was high. Went for routine physical. I also went for a routine eye exam, another thing I had put off for years, and ophthalmologist found I had a slightly protruding left eye, again I was caught off guard, hadn’t known that this was happening, but this was another piece of the puzzle for my internal medicine person, who by this time had my blood lab results w/wonky out of range, so he had my TSH/T4/T3 levels etc taken again, which showed even wonkier the 2nd time. I did have the tremors though, I attributed those to caffeine or peri-menopause, or being hungry or time of month.

I felt good so didn’t expect what resulted . shortly before the diagnosis was confirmed (about a month later) I started having the rapid resting heartbeat. What is weird is that my antibody results/uptake etc were way up there, but I seem to not have had the extreme symptoms that others have reported on these forums w/test results in less extreme ranges. I don’t know if this is because I was just in the beginning phases of the disease or what, but everyone definitely seems to have different experiences w/this disease.

Enough about me and my experiences.

If possible, please shop around for another Endo. Find one that has dealt w/GD patients. IMHO most Endos are dealing with diabetes and hypothyroidism.

best of luck, keep us posted.

[knitlit]

in reply to: checking in. Some good news Left eye much better #1068420

Sue Conard wrote:Hello Knitlit:

AWESOME!! THANKS FOR SHARING "GOOD NEWS !!"
Question? Are you on synthroid b/c you had your thyroid removed? If so, how long ago?
Thanks for any info since I too have the TED and know that RAI is not an option for me.

Update: 9/20/09

Sue I actually went the RAI route. Mar 24, 09. I was diagnosed in Feb 09. This was a surprise diagnosis since I thought I had been feeling fine,. (by accident thru a yearly checkup in Jan is how I found out I was hyper.) I wasn’t aware of having eye problems or a goiter. I had a small enlargement of my thyroid it turns out also. found out my left eye was slightly protruding.

So having the eye improvement has been a great relief, I was very concerned that I would have more eye problems before improvements. My Endo had me on methimazole 2 days after the RAI up until June 23? so was on the ATD for about 3 months after RAI. My levels weren’t low enough until the first week in July to start on synthroid.

Last Endo visit was about 2wks ago, he reduced my synthroid from 100 to 75. I was going in the upper range again I guess, I’m feeling fine on the 75 dose, it will be mid Oct before I go for more bloodwork to see where I am at.

My eyes have been doing great, I did have one day last week where I needed to use my eye drops 3 times, that was the first time in a month and a half.

[knitlit]

in reply to: FYI all, I’m going on vacation! #1069382

Have fun!

I’m going for 4 days starting tomorrow…of all things I will be white water rafting on a class III/IV river!

[knitlit]

in reply to: And the verdict is. Drum roll please…… #1069514

So glad you have had this good news! Hang in there, things are getting better now!

I was just informed that I could start taking Synthroid (or generic) this past week too! He started me on 100 mcg’s.

I have family members that have been on this for years so it hasn’t made me too worried, I don’t like having to take it, but know I have to. My only concern is that I have 1 sister who has not done well on any of the generic forms of this, so I requested the brand name drug. My Endo was very good in addressing my concerns over this, so I may try the generic and see how I feel for the next refill. His preference is for the Synthroid only brand when a person has/had thyroid cancer. My sister’s issue was non cancerous goiter nodules that had necessitated removing most of her thyroid over 20 years ago, so her experience and knowledge of what works for her is different than my situation.

Here is my experience so far: I have been having the cold hands/feet & fatigue these past few weeks. Because I was going on Vacation the 28th and my endo appt. was the 22nd, I went to the lab the week before, so my Endo would have the results to make any changes before I went on vacation ” title=”Smile” />

They called in my synthroid prescription on Monday the 20th, I started taking it on Tues morning. I still had the fatigue and cold/hands and feet by Thurs, but since Friday I have started feeling more normal energy levels, and each day the cold/hands feet thing is getting better AND it looks like the scale is being a little kinder on my weight loss ” title=”Very Happy” /> I figured it would take almost a month before I felt any change? the Dr. told me it would be quicker than that, but subtle.

My Endo now wants me to go the week before appts to get the bloodwork done. Other good news: my BP was 112/75 and resting pulse 50. ” title=”Very Happy” /> I am now off the beta blocker, and so far, no shaking.

[knitlit]

in reply to: Question re: weight gain #1069436

I think I have gained 15 lbs since March. My treatment was RAI plus methimazole & a beta blocker.

June 23? I stopped the ATM, a few weeks before that I was only taking a 1/2 pill of the beta blocker. As others have said, as our thyroid is suppressed from functioning, it usually is going to make us gain. When I was hyper, exercise and watching what I ate, my weight seems to fall off like clockwork and even w/ an off week where I ate too much, I at least, seemed to have maintained or lost weight with no problems…now, it is different that is for sure.

F.Y.I: I was not given the go ahead to exercise until around June 23 when I could stop the ATM. Exercise will continue to destroy muscle instead of building it up when we are in the GD hyper state, so that is why I mention this.

It is natural to have anxiety about the weight gain..I certainly have, even though I know it is part of the process. I was pretty overweight a few years ago, successfully lost weight by activity & healthy food behavior changes. It took me 2 years to get to a healthy weight and then I maintained my weight in the healthy range another 2 years before being diagnosed with GD this February.

Elastic waistband pants have been my friend here lately

[knitlit]

in reply to: the rai is working:-) #1070051

Great News Hopeful! so glad that things are going better.

[knitlit]

in reply to: Crazy or Graves Disease? #1070432

I won’t know if my levels are in the normal ranges until July 22, but I noticed some listless type feelings last week (my levels are falling finally)that are like depression..sleeping a lot on my days off when I really needed to get stuff done…I felt comforted by just reading. I was in what I call the doldrums.

I was just horrible to my DH too, very irritable with him in particular over stupid stuff, that I truly didn’t feel was important, but there I was without any warning even to myself with a nit picky petty outburst about nothing. I could hear myself acting like this towards him, and my internal conversation with myself during these outburst was something like this, "what in the world is wrong with me? I’m not feeling mad or tense, yet here I’m acting like he has insulted me ore something?" I hadn’t been like this since diagnosed w/GD. Thank goodness he was pretty patient w/this deporable behavior. I’m a pretty positive, good humored person normally. I have my bad humored moments, like anyone else, but this was just weird since I really wasn’t feeling the anger that my mouth was mouthing.

I don’t know if it is the GD or my Thyroid levels fluctuating/falling or other hormonal things happening to tell you the truth. Today and yesterday, I feel my normal self..no naps. worked my 9 hour work shift yesterday and spent today getting our house ready for out-of-town company. I still have lots of cleaning to do but am feeling satisfied that I was able to tackle all that I did without fatigue.

So, take each day as it comes, realize "This too, shall pass". There are going to be ups and downs

[knitlit]

in reply to: confused #1070456

Hubb, you can have hyperthyroidism without having GD. But GD is one of the more common reasons for hyperthyroidism, from what I understand. Some of the hyperthyroid symptoms would be very similar but only a temporary condition if not GD. (fast bp, pulse, weight loss I think would be common for both)

You definitely need your lab results explained to you and to read up on this. Some forms of hyperthyroidism are just temporary due to a virus or some other condition that will go away once you recuperate/treated. Where graves disease is an autoimmune thyroid condition or disease.

This forum is a great resource, I know others more knowledgeable will respond. Keep calm, go to the library, gather information, question your doctor, have him/her explain your lab results.

best of luck.

[knitlit]

in reply to: Just diagnosed with Graves…and I am scared #1070469

I just need to add, that finding out I have a "DISEASE" was hard. I was supposed to be the healthy one!

Wrapping my mind around this to put it into context, I was thankful it wasn’t a brain tumor that was making my eye slightly protrude. I lost a beloved sister to BC a year and a half ago. My DH lost a beloved Aunt to ALS.

Now, I feel that being diagnosed w/GD before I did feel bad and have serious complications without treatment is something to be thankful for too.

[knitlit]

in reply to: Just diagnosed with Graves…and I am scared #1070468

This sounds like deja vu. I was feeling good, going wfor a annual physical when they found not only slight TED in left eye but very high thyroid levels, then the thyroid antibodies…I have never been on medications either.

Is your dr. actually scheduling the Radio Iodine Uptake test? or have they already done so? This helps rule out other temporary hyperthyroid issues as well as confirms GD, and if you decide on RAI, it helps them determine the right dose for ablation. When I was researching (I was diagnosed in Feb) I would confuse RAI(ablation) with RAIU (Radio iodine Uptake Test)

Go to your library and read as much as you can on GD and the pros and cons of the 3 treatments. Yes, there are only 3 treatments..but within the ATM and RAI there are combination’s too.

My treatment hasn’t been the same as others on this board it seems, but my GD symptoms have not been the same either, others have had different degrees of symptoms and how they have affected their personal and professional lives. We have all been diagnosed at different progressions of this disease, as well as age of maturity, so that surely has an impact on what the best treatment options are too.

Keep us posted, hang in there, I hope that you are feeling OK otherwise. Educate yourself, Question your dr. on why he recommends a particular treatment, then the decision should be yours. Sounds simple, know it isn’t.

(F.Y.I. similar situation to mine, I thought ATM was going to be the prescribed method, but my Endo recommended RAI, I questioned, I countered his answers with my concerns, he acknowledged that we could go the ATM if that is what I wanted, I reluctantly went with his recommendation, and did RAI a week later. No Problems, I have felt fine through this whole process health wise. He put me on ATM methimazole 2 days after the RAI, I am now on half dose of the methimazole and beta blocker with permission to cease taking the methimazole completely if I start to feel sluggish and cold. They have been checking me every 5-7 weeks)

[knitlit]

in reply to: TED- and eye pain #1070561

I have slight TED in my left eye, but both my Ophthalmologist & Endocrinologist emphasized call them immediately if I start having eye pain.

So, based on this, an Ophthalmologist if at all possible or your Endo as soon as possible.

Hope this is resolved soon for you. Keep us posted, OK?

[knitlit]

in reply to: Leg Cramps? #1070677

I get the leg cramps at times too, since being diagnosed in Feb. I think if I am hydrated well and had either a baked potato or banana that day, it seems to not happen. It will usually wake me up out of sleep in my darn calf muscle.

[knitlit]

in reply to: Im not on atds during rai. Why? #1070679

It must depend on other factors, the results for my thyroid stimulating hormone receptor antibody or is it the TSI?(Thyroid Stimulating Immunoglobulins) number was high. so maybe precaution against TS after RAI(or the Endo’s philosophy/success experience in treating GD patients?)

I do have slight TED in the left eye, and was never on any ATM’s before the RAI. I started Methimazole 2 days after RAI, 20 mg. Uptake was 60%.

Hope this helps.

[knitlit]

in reply to: three weeks post rai… #1070739

glad you are seeing some improvements. It is definitely a waiting game.

I had my RAI on Mar 23, and have been on 20 mg of Methimazole and a beta blocker as part of the treatment.

I had my 2nd followup after RAI (mar 23 RAI) this past Wed. My BP was 117/68 and my resting rate was 64 YIPEEE! first time my resting rate has been that low when they have checked me, plua good BP. My Endo said I could decrease the betablocker. I was only taking one a day of the beta (except for a few weeks ago when I had to take one before bed, due to waking up at 3 am w/racing heart for a few nights) I forgot to ask how to decrease the dose, I will ask the pharmacist today on the best way. For now, I thought I will take it 6 of the 7 days this week, today being the day I skip.

Funny thing is, all through this I have felt good health wise, just worried /panicked by the diagnosis of GD, and the fact I can’t do the normal stuff to stay healthy right now (cardio/strength training). The Endo asked if I was feeling better than I had, and had to tell him honestly that I have felt good continually so no difference from when I was diagnosed in Feb.

I still have to wait for the TSH etc results from Wed to know for sure how things are going now. I was really high 6 weeks after RAI when they testedb5 wks ago, in fact, higher than I was when diagnosed, so I was told to take double the dose of the ATM for 7 days, then go back to normal dose.

So, I am starting to relax a bit more since getting the GD diagnosis. The sky isn’t falling. I will really be happy when told I can resume exercise.

[knitlit]

in reply to: Weaning from beta blocker? #1071062

Ely & Shari, I am so looking forward to when I can be off the beta blocker & anti thyroid med, and be back to my exercise routine. Congratulations on getting to this point.

[Author]

Posts