[kallikat]

in reply to: Graves….RAI….hypo….now this! #1075451

I’m having a real "DUH!" moment right now….you see, I work for a food distirbution company and we have 3 registered dietitians on staff….their office is right across the hall from mine! LOL How great is that?!
I really appreciate the comments – especially the one about staying away from alcohol – I’m upset my Dr even mentioned that.
I’m not sure about the iron skillet, though – I have a glass-top range! Maybe I’ll get a separate burner, if it really makes a difference. It does make sense…iron.
Well – I’m headed across the hall to get a diet plan! Then I’m going to find out where to get "blackstrap molasses" – God, that sounds too sweet, but okay!
THANKS!

[kallikat]

in reply to: Post-RAI – when do I start feeling better? #1075559

Thank you so much for your input!!
I really wasn’t wanting to FACILITATE the group – I’m kinda hoping I can find a Dr or RN that’s interested in doing it. I think my days of running things is over – at least temporarily! Since finding this website last week I have read every single posting, and I can only imagine the benefit to all of us at having a place to go to fellowship with others just like us, face to face. I just don’t think there are enough medical professionals who feel it’s important though – at least not here. In fact, I called the largest medical group in our city (4 hospitals) and asked if they had a thyroid support group and the woman actually said they only have groups like that for the "big diseases like cancer and diabetes." !!!!!!! I know she was only an office worker – not a nurse or doctor – but, gosh was that demeaning!
Oh well, for now I still have the website. I’m going to send a message to Dr Patterson – can’t wait to read her suggestions!
And don’t worry about me drinking that shake….Yuck! My son is now studying up so he can develop a low-impact exercise program for me……we’ll see how that goes.

[kallikat]

in reply to: Post-RAI – when do I start feeling better? #1075557

Ski –
I spoke with my Dr about the immune system issue and we discussed the effects of RAI and the problems I’ve had this year. She has already tested me for "just about everything there is a test for", and all results were negative. So we looked at my history. When my first child was born in 1985 I had to have a transfusion and was anemic for several years afterward. I could never donate blood because of this. My blood count is still considered "low normal". I always took an iron supplement – but stopped that when I was told by my endo that it would interfere with my treatment for GD. Before being diagnosed, I went 8 months without having a menstrual period (thought all those symptoms were menopause). Once I started taking methamazole, I started having very heavy, hemorage like, flows (making up for lost time, perhaps??). And I started having blood taken for labwork once, and sometimes twice, a month. My Dr says it may be a stretch, but it could be that my blood count has gone down since she looked at it early last year due to all that "bloodletting". So I am going in today for labwork on that. She said if it’s lower we will cut down on taking my blood – go to every 60 days instead of 30 and look at supplements I may be able to take. And once my TSH is normal, we’ll only do labwork every 6 months (right now it’s .024). (Thanks for steering me in the right direction).
My son is a trainer at a local gym and wants me to start drinking some nasty protein shake concoction that’s supposed to build muscle mass. My husband said if I drank it without working out it would only make me gain weight and make me feel worse about myself. My son countered with the statement that I would probably gain some at first, but eventually would feel good enough to work out and the weight would eventually turn to muscle. My husband and my oldest son think I should just relax, get comfy on the couch and read, and enjoy being taken care of until my levels are right.
I really wish there was a support group in my area…in fact I think I will make some phone calls and figure out how to start one! That may be just what I, and others like me, need! I know I, for one, have too many people trying to help and give me advice. And no one really knows much except the doctors. And the more I talk to my Dr, the more I have to pay. This website is a Godsend – I’m glad I finally found it. But seeing people face to face who live close by, and talking may do wonders. Do you have any info on how to get started?

[kallikat]

in reply to: Attitude #1075606

Jeff,
You’ve gotten a lot of really good advice. The part of your letter that prompted my response was the statement about having teenagers. I actually thought my 16 year old son was giving me a heart attack when I first went to the Dr about my symptoms. After being hooked up to an EKG machine and having many tests done that was ruled out.
But for the few days it took for test results to come back, it was very tense at home. My husband blamed my son, and so forth…
When the GD diagnosis was made, we were all happy that my heart was okay….but what exactly is Graves???? My oldest son at college read up on it; my husband and I surfed the internet and talked to my Dr. My youngest son listened to what we and his brother told him. For a time my family treated me like I was fragile and could break any minute. At first I liked that, but they tended to overlook ALL emotions and patronize me. Even when I was serious they would tell me to calm down and take it easy, etc… That was frustrating.
Then we went through a period where, I think they all were getting tired of babying me. Which was fine – I didn’t feel I was handicapped and had told them on several occasions to stop treating me like a baby. But then I had to remind them that I really was emotionally fragile sometimes. Now, almost 2 years later, we have settled into a comfortable way of dealing with it. We don’t talk about it all the time, but if we’re out shopping together, they automatically carry my bags, or find a bench to rest on every now and then, etc….without speaking or making a big deal of it. They know I cry very easily now, when I didn’t before. It doesn’t alarm them anymore – they just hug me and give me a tissue. They also approach me differently with problems. My husband has really stepped up to the plate and taken responsibility for solving all the problems, filling me in when necessary and telling me it’s taken care of.
I guess what I’m saying, Jeff, is – if you love your wife, be there for her and understand these changes in her body are not her choice, and it’s nothing personal against you. I don’t know for sure, but I’m guessing she really really needs you, probably more than ever before, whether she says so or not.
Hang in there.

[kallikat]

in reply to: Post-RAI – when do I start feeling better? #1075555

Wow. You’ve got me scared, now! I guess I’m learning a lot more here than I am from my Drs. My endo, GP and Ob/GYN all say these things are related to the RAI, and I didn’t have reason to doubt that until now. What do I tell her to test me for? If all this isn’t related to the RAI or Graves, I want to know what’s going on. Since I was adopted at birth, I have no family history to go by.
Oh dear…sounds like I’m fixing to open a new can of worms.
Thank you so much for the clarification.

[kallikat]

in reply to: Graves Disease & other Autoimmune diseases(JCWRN look here) #1075641

I envy all of you. I was adopted at birth, so I have no clue about my genetic history. It certainly makes filling out med forms easier (LOL). But it means I get tested for ALOT of things every time I see a new Dr. Unfortunately, thyroid disease was never a concern for any of my doctors until I developed "storm-range" symptoms.
I am keeping a health journal for my 2 grown sons and future grandchildren. My youngest son is in the Army and I made sure he put down on his initial exam form that I had Graves. The Army Dr checked his thyroid and it was normal (yeah!). My oldest son and his wife are expecting their first child and he insisted the Dr check his wife’s thyroid level at her first prenatal visit (normal – yeah!).
I really, really wish I had been armed with the info ammo I’ve given my kids.

[kallikat]

in reply to: Post-RAI – when do I start feeling better? #1075551

Thank you so much for the encouragement, Ski.
One thing I have discovered in the city where I live (Shreveport), is that doctors are just too busy to spend a lot of time with me. My endo zips in and out of the room, remarks on my current levels, gives me a new Rx, spouts a few cliches, and that’s it. My GP, however, has been concerned about my potassium levels and cholesteral, etc… But my endo won’t test anything but the T’s. So I was going two different places and getting stuck twice each time. I honestly can’t see her going over a "symptom diary" with me. I finally said "enough" and now I just go to my GP, who does it all, and is very attentive. My endo only wanted to see me every 6 months – my GP is the one who realized I needed a dosage change immediately this past summer, and she’s monitoring me very carefully. I do labwork every 30 days now. It’s a pain but it seems to be working better. I now take prescription Potassium Chloride and Lasix for swelling (this helps TREMENDOUSLY), and I watch my cholesteral closely.
One thing I have learned about RAI is that I didn’t have near enough info before I had it. The papers they gave me, and things I read online warned me about lowered immunity. But I wasn’t prepared at all! I had RAI in Sept 07, and 2 months later had to have an abcess surgically removed from my thigh (it came up quick and grew to the size of a baseball in 2 days) – the surgeon said it was strep infection, due to a weak immune system. Then I developed seasonal allergies I’ve never, ever had and started taking Zyrtec daily. I’ve also had 2 double ear infections and 3 yeast infections (one due to antibiotics). I’ve always been a very clean person and very carefully about germs (public bathroom phobia!!). But now I take extra precautions – I only use antibacterial soap, and wash my hands many times a day. I threw away the loofa in the shower (collects bacteria) and I use one-time use disposal razors. I am really anal now!
I would like to warn EVERYONE who is going to have RAI!!! The Graves has changed your body – and the RAI will, too. I don’t regret having it AT ALL. I just wish I had known what impact it would have.
I guess – just like all of us in this boat – I want my old life back. I used to be healthy and active and slim and outgoing. When I remember everything I used to do it’s overwhelming! I raised 2 sons and did everything with them – I worked, kept a spotless house, cooked every day, was involved in church and different clubs, booster mom, etc. I used to help organize the annual Cancer walks and stay up all night walking…now I can’t even get around the track more than once! And now when I get off work I just want to go home and sit on the couch. Everything is an effort. My sons believe they just wore me out (and I let them believe it, too!).
I’m not sure I have the time or the money for a physical therapist – but I will explore the possibility and study this online. Perhaps I can come up with an in-home therapy routine that works. Thanks again!

[kallikat]

in reply to: Post-RAI – when do I start feeling better? #1075548

I am actually fighting the urge to lay my head down on the keyboard right this minute!
I find I go through phases – which coincide with dosage changes. Sometimes I’m just lazy and tired and could sleep all the time – but sometimes I’m exhausted like I just ran a marathon even though I’ve been sitting all day. In the former stage I sleep well. However, the "exhaustion" stage means I toss and turn and feel aggravated and don’t really sleep good.
I was a size 10 when I was diagnosed – now I fluctuate between a 14 and 16. I gained about 30 pounds – which I REALLY need to lose!
It is all very depressing. I envy your ability to take afternoon naps. I have to work every day, which can be a struggle sometimes – like today. I can’t seem to concentrate on paperwork – and that’s scarey because I am working on a very important multi-million dollar bid right now!! I thank God my coworkers understand and help me cope.

[kallikat]

in reply to: Unanswered questions #1075540

Same thing happened with me. It’s not at all comforting to know that most people LOSE weight with GD.
I had RAI 13 months ago. I haven’t gained anymore weight – but I can’t seem to lose it, either. BUT – I no longer have palpitations, my blood pressure is better, my cholesterol is better, and I’m not panicky and anxious like I was. I’m depressed about my weight (VERY DEPRESSED) – but I feel having RAI helped me tremendously. Just remember that afterward you may become HYPO (like me), and it is difficult to lose weight. But you’re not going to lose it like you are, either.
I’m hoping that someone will come up with a pill or special diet for people like us. In the meantime, we need to hang in there and thank the Good Lord we didn’t die in a thyroid storm.

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