[kallikat]

in reply to: Treatment issues #1074597

Shebaj,
I, too, am in LA – NW corner, but I have business contacts in the NOLA area.
Have you tried going to the Common Ground Health Clinic in Algiers? Their website is http://www.cghc.org. Phone is 504-361-9800. Please try them, if you haven’t already.
Good luck and take care of yourself.

[kallikat]

in reply to: decongestants #1074714

Oh Cathy! I have the same problem with my ears. It all goes back to bad ear infections as a baby (both drums burst at the same time when I was 8 mos old). When I was 12 my family dr said he couldn’t take out my tonsils due to adenoid and eustasian tube difficulties, so I have gotten sinus, ear and throat infections and illnesses every year my whole life. I have been told for years that I need tubes in my ears – but either my kids needed something or my insurance didn’t cover it all, or I was dealing with more serious things.
Now that my TSH is normal and I don’t have to go to the Dr for that every month, (and my kids are grown and I have good insurance) I am definately going to see an ENT about those tubes.
Maybe you should see an ENT, also.

[kallikat]

in reply to: Normal At Last! There IS hope! #1074675

My other Dr had me on a daily diuretic for almost 2 years – which my new dr thinks might have been hindering my healing. On her advice I stopped the diuretic on Dec 17 (My TSH level at that time was .093). Here we are a few weeks later at 1.24 and feeling great! I had thought I would blow up like a balloon if I quit the lasix, but surprisingly I didn’t. I felt bloated the first couple of days, then it went down.
It could be the diuretic caused the diarrhea – but it hasn’t let up since I stopped taking it, so it’s baffling. I used to be closer to constipated all the time, so this really is NOT as big a problem as it would seem to most people. (LOL) I just keep thinking about how many calories are sliding through without sticking! And I actually have lost a few pounds.
I sure hope my joy doesn’t jinx things. I like the way I feel right now, but I also know it could change again.

[kallikat]

in reply to: anyone have Pretibial Myxedema? #1074908

I developed really bad edema before I was diagnosed, and have been on diuretics since. My new Dr is weening me off Lasix right now, and the swelling is coming back. It’s been 3 days since I had a Lasix and I can’t wear my rings. I have had diareah for over a month, and we’re not sure why. A blood workup in 2 weeks should tell us what’s going on.
I do have some itching, but not all the time, and not in the same places each time. The skin on my legs does seem tougher, but I don’t think it’s like an orange. I hope this isn’t the beginning of PM.
My dr also thinks my thyroid may be functioning again (14 months after RAI), so she’s weening me off synthroid. My TSH is .093 and I’m taking 50mcg righrt now.

[kallikat]

in reply to: Graves and Stomach Issues? #1074895

I had RAI in Sept 2007, and it seems my thyroid has woken up. My dr is slowly bringing me off synthroid and I’ve had diareah since early November. My TSH was .093 two weeks ago, and I’m down to 50mcg of synthroid. In 2 weeks I go in for a full blood workup. I never had the stomach problems before so we’re baffled as to why I have them now. I don’t have the ulcer symptoms you’re talking about, though. I thought this problem was part of GD and the low TSH level, but my Dr isn’t so sure.
Hopefully my tests will show what it is and I’ll be ok. She also says it may be possible that I can stop taking synthroid – although I may go hypo again one day so we’ll have to watch it. I can’t imagine being pill-free again. Is it normal for this to happen? Is the stomach problem normal?

[kallikat]

in reply to: Touch #1074949

I went through a period like that, also. My husband and I are VERY close and spend a lot of time together – we’re best friends. I think that is what helped us through all this. For a while I felt uncomfortable being hugged – but I also felt uncomfortable in coats or snug clothes – I didn’t even wear a coat all winter last year! And my mind was foggy, too – so I couldn’t really communicate these feelings very well. Unfortunately, he became ill with diverticulitis and had to have a colostomy – so we had other reasons not to hug up as much, and his illness took presidence over mine in that regard. So it never became the big issue it probably would have been. Our timing was perfect, though – as soon as he recovered from his second (colostomy reversal) surgery, I had started feeling better. Hugging is not an issue anymore.
Through it all, we BOTH learned patience and compassion for each other on a whole new level. Stick by her (maybe not too close right now!) – but be there for her and try to be understanding, even though it’s very hard to understand. I know you care very much for her or you wouldn’t have logged onto this site.
You’re in my prayers.

[kallikat]

in reply to: New to Graves and struggling with life… #1075394

"spenanelson":1outcp4y wrote:

[quote:1outcp4y]I am 38 and I was diagnosed 4 years ago, had RAI was on levoxyl for 3 years then had my thyroid come back. I have since discovered that you never really get ride of Graves. I found out that I was hyper while I was starting the process for IVF. The same day that I found out one of the main reasons I could not convieve.. I also found out that I was hyper — again.

They put me on PTU but over the next 3 months they kept having to increase my dosage and finally came to the conculsion that I had a very resistant form of Graves. In the end I was taking 600 mg of PTU daily and 25 of atenolol. I have since discovered that I suffered liver damage and tested positve for gastric parietal cell AB (4 times the normal levels) and my possible have pernicious aniema. [/quote:1outcp4y][/quote:1outcp4y]

My doctor believes my thyroid is stubborn, too. I had RAI in Sept 07, and my TSH level bounced around then stabilized for a while, but now we’re having a tough time regulating the synthroid. Last week my level was .093 (up from .024 last month), so my Dr took me completely off synthroid for two weeks, and then I’m to have more labwork done. She said if it’s not better she is sending me back to my endo for another uptake. Gee! I’m just wondering if I have that "resistant form" of Graves, also. I didn’t realize there were different forms – is there a way to test for it?

[kallikat]

in reply to: My Story and My questions…PLEASE HELP! #1075207

Mamabear – I have a confession:
I never realized how important knowing what my levels were until I found this website last month. On 11/3 I had lab work and made a point of writing down my TSH level, and I will be keeping up with it from now on. Sure, my Dr told me each time – but I never understood the NUMBERs, just the WORDS they used – "too high", "storm range", "overdrive", "fluctuating", "bad", etc…
I DO know my med doses, though, for what that is worth. When I was first diagnosed, I took 40 mg of tapazole right off the bat. That was adjusted monthly up and down until RAI 8 months later. A month after RAI I started synthroid at 147mgc, and it’s come down 12mcg at a time until I’m at 75mcg now. I have to get labwork done this week and will right down the numbers on the little chart I made myself.
I guess I should probably call my endo and see if they can tell me what the numbers were before RAI. Now that I know more about it, I can see how it would be helpful to compare.
Sorry I confused you!

[kallikat]

in reply to: to wristmaker #1075216

Cathy – I have been sick a lot, too, since RAI 15 months ago. And I just missed work 2 weeks ago due to a virus – I just couldn’t get out of bed. Nyquil is my "drug" of choice these days! I’d rather sleep through illness than feel it. I never, ever took sick days before all this. Luckily, I have good relationships with management here and they "follow" my progress. Every time they hear something about Graves they mention it. When I had RAI, they were very concerned about my radiation level and didn’t want me in the office – so it was easy to take a few days off for that. There is a lot to be said for working relationships, indeed. My husband also works here, in management, so even if they wonder whether I’m making it up, it will never be said out loud, I don’t think. But I honestly don’t think I’ve ever given them reason to feel that way. I believe if you’re an honest person and a good employee, then your actions and history should let your supervisors know the truth. Hang in there, Cathy. We’re here with you!

Wristmaker – I’m so very glad you have an appointment to follow up with your lab. Graves symptoms can change so often that a year’s prescription just cannot be right that entire time. When I was on tapazole/methamizole, I had labwork every 6 weeks, and my dose went up or down each time. Since RAI I’ve been on synthroid, and I have lab done every 30 days, and my dose always changes with that, too. I also have my cholesteral checked every other month – because my Dr says thyroid problems can effect it. It bounces up and down, also.
You will definitely feel better once you get things regulated properly (which could mean constant med changes).
I lived in a small rural town for 39 years before moving to the city, and I do know how difficult that is. I also know that some free clinics use a rotating staff, so it’s impossible to see the same person each time. I hate that you are in that situation, but hopefully the nurse practitioner you’re going to see will help you and work out payments until you can get medicaid or disability filed. You obviously have internet access, so use it! Read all of the posts on this site, then google graves disease and read it all. Doctors can tell you all you need to know – but they rarely have time. I find it’s easier to educate myself and make a list of specific questions to ask my Dr. I pray for you and wish you only the best of luck and peace of mind. Please take care of yourself.

[kallikat]

in reply to: My Story and My questions…PLEASE HELP! #1075204

Mobrien,
Your story sounds so much like mine! My endo said I was in "overdrive" for too long. And I gained weight, too – after losing down to my smallest size. I used methamizole for 8 months before RAI. My levels were bouncing back and forth, so the med only worked some of the time. Which meant I felt bad most of the time. My endo said the chance of my levels straightening out were very slim, and if possible at all would take time. I felt that RAI was the most logical solution because my career requires that I be "on top" of things and I was having so much trouble concentrating.
It is easier to control after RAI – that is so true – but it doesn’t mean you will be normal immediately. I had RAI in Sept 07 and my TSH is at .024 right now. My synthroid dosage keeps going down, and I feel better each time it does – but not normal yet. But this "abnormal" feeling is a lot better than before the RAI, and I have hope that I will eventually be "normal" – not well, but within normal TSH range.
About hair: God also blessed me with very thick curly hair, which isn’t as thick anymore. People used to say that my hair was "the most beautiful hair they’d ever seen" – even hairdressers. They don’t say that anymore ” title=”Sad” /> I just quit styling my hair at all – wash, towel, and go. Because it’s naturally curly, I can get away with it (it looks like Stella’s on CSI NY). When my levels cause it to be dry and brittle, I use extra conditioner (the leave-in spray on stuff) after washing. When my levels make it go the other way, it can get oily so I only use conditioner on the ends at those times. I had started getting highlights to cover the gray the year before I was diagnosed. Now I let the gray show, and I’ve been told it looks "sophisticated" -(HA!). I went through the tears and frustrations when it started coming out, and I thank God he gave me enough to spare. I often wonder if He is using this as a lesson in vanity. My husband now keeps the plunger close to the shower door, and he is amazed at how much is coming out. So much so that HE asked my Dr about it.
The bottom line is – I am alive and am taking medication that is helping me and I won’t let Graves break my spirit. I’m gonna keep on trucking and adapt to the changing symptoms as I have to. And if I have to buy a hat, I will….and as I do, I will thank God I am able to drive to the store to get it.

[kallikat]

in reply to: New to Graves and struggling with life… #1075373

I’ve always been positive – the glass is always half full with me! The problem with being an optimist is the frequent letdowns when things turn out negative. I’m upset for a "minute", until I figure out what the "silver lining" is this time. (I have always been one to "figure out" everything – definitely type A!) So I guess I’ve always been on a mental roller coaster. (No – I am not manic-depressive, I asked a psychologist about that once, and he assured me I’m just anal retentive!) Then GD introduced a physical roller coaster.
Now, if I can only get the mental and physical roller coasters to go up and down at the same time! LOL
Also – I often wonder if God is using GD to teach me that there are some things I just can’t control in my life. I fear I am failing this test horribly!

[kallikat]

in reply to: New to Graves and struggling with life… #1075369

It is so interesting to me after reading all the posts, that most of us went through some life changes before being diagnosed. Did the stress bring on the symptoms – or was stress one of the symptoms? (chicken or egg?)
Jill – you said you moved, changed jobs, got married and bought a house in the year before you were diagnosed. All the same for me, plus: one son graduated college, the other joined the army, then the college grad got married early this year. I found out last week I’m going to be a grandmother next June! Talk about life changes!!!
What a roller coaster!

[kallikat]

in reply to: thyroid illnesses and diet coke #1075437

I used to be avid DC drinker…until a good friend showed me an article in a health magazine that really changed my thinking. It said that while DC had no calories, the chemicals in it made you crave sugar, which negates the purpose for drinking it. So I tested the theory. I went back to drinking regular Dr Pepper…and guess what? I didn’t have to have dessert at lunch or M&M’s on my desk anymore. I really didn’t crave sweets all the time. And I lost a few pounds, to boot! So, that’s really all I know about the effect of diet sodas.
Now I just shake my head when I see people drinking a diet coke while gobbling a sugary treat!

[kallikat]

in reply to: Hi wacomom #1075315

Wow! I thought I was going crazy, too! I used to be kinda meek – and standing up for myself took a lot of nerve. But about 3 years ago, I started becoming different. My family attributed it to my divorce in 2002 after too many years of mental abuse. They figured I had "found my voice" or something. My sons learned that when I said "no" I really, really meant it! It took me a couple of years to tone it down and learn to control myself. I learned to use this "new found voice" to stand up for myself without being too, um….witchy, I guess you could say.
I remarried and moved from my little hometown to the city in 2004, and no one here knows what I used to be like. I got a new career and have quickly "rose in the ranks"….partly because of this new "attitude". I’m not afraid to say what’s on my mind, and I don’t say things I don’t mean (no brown-nosing). Our vice president tells people they shouldn’t ask me questions they don’t want honest answers to! It’s a new kind of respect I’ve never gotten before.
When I was diagnosed with GD in Feb 2007, the doctor said it seems like it’s been coming on for a while. In 2002 I rapidly lost about 20 pounds and thought it was stress from the divorce. When I met my current husband two years later, I started gaining (happy at last, I thought.). But when I tried to control it to make sure I didn’t gain too much….I couldn’t. I actually got dizzy and fell off the treadmill one night and my heart was racing. That’s when I got diagnosed.
So…my new found voice was just one of many symptoms. I know that as my thyroid levels fluctuate, so does my "witch" level! I can be happy and cheerful one day, and either weepy or aggravated the next. And since my personality is "dependent" upon my levels, traditional antidepressents and mood meds just don’t work. So I have to keep myself in check when I feel these changes coming.
Wacomom – I don’t know if this makes you feel any better, but I hope it does. I was adopted, so I don’t know just how many problems I have in my genes. Sometimes that’s a good thing – sometimes not. But my parents told me when I was a teenager that my birth mother was a "woman of loose morals". So I wondered if I had that in me, too. And I STRIVED to be a good mother and prove that I wasn’t like her. So I kinda understand what you’re feeling (a little maybe). Don’t give up just because you think you’re "supposed" to be like that due to genes. You control your body and mind. Try to teach yourself to use those moods to your advantage and control them. Maybe it’s all just hormones.
BTW – I love Waco – my son graduated from Baylor last year and I really miss visiting your city!

[kallikat]

in reply to: Graves….RAI….hypo….now this! #1075455

Thank you for clarification, Bobbi! I take a multi vit with good iron content with supper about 6-7ish. I take my synthroid at 5:30 am, then go back to bed for an hour before I have coffee – that’s when I take my lasix with a big glass of water. My Dr says the iron I’m getting in the multi vit is just the right amount of supplement.
So – I just spent almost an hour with our dietitian, and she’s digging up info and making a personal diet plan menu for me. She told me I had to learn to like liver and spinach! YUCK! She also said I need to eat 6 (YIKES) meals a day with balanced protein and carbs. And I have to learn to eat breakfast – which I have never done. I’m scared to see the menu she recommends – but she’s an expert and does this for our nursing home and hospital customers all the time. It’s a mixed blessing that she’s across the hall….she can help, but she can also check up on me constantly to make sure I’m following her instructions. Gee!

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