[Wolfmother November 6, 2008 at 5:11 pm Post count: 11]

#1075547

I’ve been told all the same things by my endo relating to weight, word for word which is uncanny. I dont know what happens either. I had my RAI in November 2007 and I’ve put on more than ten kilos since starting thyroxine. My levels are close to normal but not quite there yet so I’m still hypothyroid.

Do you find you just want to sleep all of the time? I’m sleeping fitfully at night and soundly if I have a nap through the day while the kids are at school. These naps can be up to three hours which make me feel very guilty! I feel fat and lazy despite feeling legitimately sick which has led to a mild depression.

From what I understand we are all different and this can take some time to get ‘okay’…..but over time (a lifetime) meds still need to be monitored and the dosage will be adjusted accordingly.

Good luck with your replys

[kallikat November 6, 2008 at 5:20 pm Post count: 29]

#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.

[Ski November 6, 2008 at 7:52 pm Post count: 1569]

#1075549

Hello to both of you,

You may each benefit from a referral to a physical therapist. The fact is that while we are hyperthyroid, we lose muscle mass. You may have a general idea of where you think your body is, but I think some strength tests with a physical therapist might surprise you. You’re both, believe it or not, in the early phase of getting better. It appears that you’ve both found a thyroid hormone level that is within the normal range, but you may not have had a lot of support in finding YOUR perfect point. If you look at your blood test results, you will see where you fall within the (quite enormous) normal range. A dose change might move you slightly one way or another, without taking you outside the normal range, and you might find that you feel a little better. Remember that thyroid hormone levels are fragile ~ changes generally happen slowly, and your body takes a while to adjust. We are told to wait at least six weeks before testing blood levels after a dose change ~ and I’ve noticed too that when my dose is changed, I have a short period (a week or so) when I feel "up" one day, "down" the next, but it eventually levels out. So give each dose change a chance, and a full evaluation. You (and your doctor) would probably benefit from using a "symptom diary," because that can give you a hint about which side of "your normal" (above or below) you are on. Some symptoms occur in both hypo and hyperthyroidism (anxiety and sleeplessness, for example), so seeing the entire constellation of your symptoms, and the severity of each (rate them on a 1-10 scale), can give you a much better idea of where to go next.

So, from here, you still have a ways to go. Take things easy, know that it’s going to take a while, but know that you will get there.

A physical therapist can be invaluable in getting your body and exercise patterns back. You could easily be overworking, if you believe there is "baseline muscle" that just doesn’t exist right now. Do only what you are capable of doing without discomfort. Just try to do a little more each day. And forgive yourself ~ I don’t believe (as the doctor said) that you should "rejoice, you have an excuse," but you need to remember that you were critically ill, and this is one of the temporary prices you must pay as your body heals. Try going out and getting some clothes (cheap ones, maybe even thrift shop stuff) that is your current size OR BIGGER, because the more comfortable you are in your clothes, the more you are able to move when the spirit moves you and then, ironically, the easier it will be to take the pounds off. It’s tough to know when you will feel like exercising, because at this point your body is doing all it can to heal, and to support you in all you’re asking it to do, and sometimes it just shuts down. Do the best you can, and truly, know you will get there.

[cathycnm November 6, 2008 at 9:13 pm Post count: 284]

#1075550

That is a great idea, Ski! I think, in fighting depression, we have to choose to focus on what we can change. If research stands correct – all depression is a form of helplessness. And, we can induce it by just taking control of light switches from people for a few short hours. There is also some research that says optimistic people are more likely to survive a second heart attack – probably because they can control some things about this illness (diet, exercise). It is no fun to be helpless about anything – and I know I keep having to talk to myself about this cause Graves has taken some of what I could control away. But, I cannot focus there and not get depressed. So, not only is physical therapy a great choice (I did that when first diagnosed with osteoporosis and got some great tips) but it is something you can choose! It allows you to feel a little more in control and optimistic about the future.

BTW – I had a bunch of the nurses I was working with say I was going to gain 20 pounds after RAI so I might as well go eat my weight in chocolate cake and enjoy it. I keep my pedometer strapped to my side these days – this gives me a chance to see what I am actually doing each day and to set reasonable goals. The immediate feedback makes in engaging. I do worry about our 3-5 upcoming snow months – as ice and osteoporosis do not mix well. Guess I will be walking Target and Walmart when I can’t get outside. Cathy

[kallikat November 6, 2008 at 9:59 pm Post count: 29]

#1019998

I was diagnosed with GD in Feb 2007 at the age of 41. When symptoms became "storm" range even with meds, my endo gave me RAI treatment. That was Sept 2007. My levels almost immediately bottomed out and I started synthroid at 147 mcg. I have continually gone down with each test and now I’m at 75 mcg. I have phases where I feel ok, but mostly I just feel fat, lazy and depressed. I gained a lot of weight with GD and my endo kept saying "once we get this straightened out that weight will fall right off". Now she says "you have an excuse to be fat – it’s your thyroid." I really don’t want an excuse to be fat. I want to be active again. It doesn’t matter how little I eat, or how healthy I eat – nothing works. I force myself to exercise – which literally makes me physically ill sometimes, which makes me more depressed. I’ve searched many websites about this, and have found no good news yet. Is there anything good in all this???
Please – can someone give me some hope???

[kallikat November 7, 2008 at 9:29 am Post count: 29]

#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!

[grneyeladydi November 7, 2008 at 9:41 am Post count: 16]

#1075552

Dear Kallikat,

I truly feel you pain. I know we all want a miracle to happen to us. To be the same person we were before Graves. I agree with Ski that we must try something new to take our minds off of the many problems we endure. I for one went from a size 4 to a (uggg) triple x or larger. I do know that most of my weight problems stem from my years of steriods which has given me Cushings Syndrome. I know that my weight problem will not go away anytime soon and hopefully will subsid after my thyroid has finally given up hope and when I discontinue some of my meds. I tried going to physical therapy but it wasn’t for me. My heart continues to give me fits and they won’t even see me until that changes. I’m not even sure it will, but I can still hope. I wish I had a magic wand that will help all of us with Graves. Easier said then done, but please be patient and things will turn around for you. I will keep you and all that are dealing with Graves in my heart and prayers. Smile my dear, it looks wonderful on you.

[Ski November 7, 2008 at 12:32 pm Post count: 1569]

#1075553

I just want to make a quick clarification ~ our immune system is not "compromised" in the classic way you would imagine, where it doesn’t work. Our immune system is actually working overtime attacking our own healthy tissue, and that’s a different defect entirely. I had RAI (twice) and have had no increase in allergies, infections, or any other illnesses since. It may be that you are suffering from some other condition (or many conditions) that has brought on all these reactions, but I don’t think it’s fair to blame RAI.

The fact is that our body goes through an awful lot through Graves’ and even through the healing, and there’s no telling which of our body systems were more "attacked" when we were hyperthyroid. We are all different, and it appears that the hyperthyroidism attacks us where we were weakest to begin with, or perhaps the effect is amplified because that part of us was already compromised, so hyperthyroidism brought on a total failure.

I’m not saying you’re not miserable, and I’m not saying that these things are not related ~ but we need to be careful about how we characterize what’s going on. If we believe we have a "weak" immune system and we take any kind of "immune system boosting" supplement, we can actually increase our symptoms, because boosting OUR immune system means accelerating the activity of our harmful antibodies (the ones attacking our thyroid, eyes and skin), which are inside our immune system just like the things that really do fight off disease. That can be a delicate dance, and we need to be very careful.

[Ski November 7, 2008 at 12:52 pm Post count: 1569]

#1075554

One more comment for Kallikat,

BRAVO that your GP is willing to help you through this. We find that many doctors can be our primary support through Graves’ ~ it doesn’t always have to be an endocrinologist. Any relationship that works for you can be effective.

And as far as a physical therapist goes ~ it’s helpful to know exactly WHERE you are weak and where you are strong, because then you can focus your exercise to support the areas that are okay, and build up the areas that are not. Without that support, it can be very difficult. Be VERY easy on yourself. One of our facilitators here had to start working out her arms by using paperback books, 10 reps at a time, because it was determined that she only had 5% of her strength there. Anything more than that would have caused strain and damage. So be VERY forgiving of your body right now, take it easy and build it up slowly.

[kallikat November 7, 2008 at 12:54 pm Post count: 29]

#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.

[Ski November 7, 2008 at 1:00 pm Post count: 1569]

#1075556

Sorry, I don’t have information on all it could be ~ there was a doctor at one of our conferences who said that when he had a Graves’ patient with symptoms that he couldn’t quite "place" in terms of a condition, that he would do an "overall screen" for other autoimmune conditions. I’m not sure what that consists of, but that would seem a good place to start. One good, comprehensive physical examination may be a wise beginning also.

I truly wish you luck, I think the worst time of any condition is before we know what’s really happening. Be VERY good to yourself now, it will help keep your frustration down.

Let us know what you find out!

[kallikat November 11, 2008 at 9:16 am Post count: 29]

#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?

[Ski November 11, 2008 at 1:44 pm Post count: 1569]

#1075558

Hi Kallikat,

I’m glad you’re having some luck in figuring out what’s up ~ I know it’s frustrating when everyone thinks they know just what you need. My gut feeling is to say no to the protein shake ~ your son means well, but he’s presuming that your body is "just like everyone else’s", and that is just not so. There are all kinds of strange chemical reactions going on in your body, and until those are set right, you are going to feel as if you’re pedaling uphill for a while.

As far as a support group, it’s GREAT that you’re feeling motivated to begin such a thing! Send a private message to Nancy Patterson and she can probably help you with some ideas. One thing to note, though ~ typically we don’t recommend that you start/host a support group until you are feeling well. It has the potential to turn into just one more thing you don’t have time or energy for, and active Graves’ patients (you may have noticed) are VERY impatient!! ” title=”Very Happy” /> The likelihood is that it’ll take a little while to ramp up anyway, but I wanted to throw that out there for your consideration.

[kallikat November 11, 2008 at 1:59 pm Post count: 29]

#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.

[Anonymous November 12, 2008 at 12:14 am Post count: 93172]

#1075560

hi kallikat,
i know what you mean about support, it would be so nice to just be able to talk to someone. i have called or emailed every hospital i can think of and can’t find ANY kind of support, and i live in chicago. i asked my endo about it, he handed me a sheet with facts about being hyperthyroid, and then said there just aren’t enough people that have graves to have support groups. as i read your post i was thinking that it was wonderful you have family that is concerned. i have a husband and one son still living at home, but no supportive relationships at all, and an extended family waiting for me to volunteer to have a thanksgiving dinner, which i really feel like i can’t handle. in the meantime i have people like my mother telling me to stop all this reading because it will drive me crazy. in some ways i think she is right. it’s interesting how many people here find this comforting. i was diagnosed 3 months ago now, and have read so much about graves since then. sometimes i think reading all these posts causes me more anxiety, causes me to wonder what will happen and when, or how long will it be. seems like that’s the worst part, the not knowing, and i have just begun this long journey. i just noticed in the last 2 weeks that i am losing my hair, my eyes hurt more and i am dead tired. i’ve had the dose on my methimizole changed every 4 weeks, after every blood test, and i cannot stand the tightness in my chest and throat everyday. i recently read an article on homeopathic remedies, and found something called calcarea carbonica, which is a remedy for people with anxiety, the type of anxiety that causes people to become overwhelmed from physical illness, their thoughts can be muddled and confused and are often chilly and sluggish, have a craving for sweets, and are easily fatigued. this describes me perfectly. i am wondering if anyone here knows anything about this or any of these remedies. has anyone ever tried it, or any other homeopathic remedy? i am wondering if it would help alleviate some of these symptoms. i know i’d have to check with the doctor, but i also know it would take forever to get an answer, just like it takes 9 days for me to find out what the blood test results are. just curious, and feeling overwhelmed at the moment….
thanks,
sandi

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