Graves disease

[DDH]

Hey ladies. I got my results back on my lab work and went to see the endocrinologist today. I am soooo depressed and have been crying and emotional, and I'm just not like this.

What she told me is that my Graves disease is back, and that I need to have my Thyroid taken out or have radioactive iodine treatment.
I asked her about my weight and not being able to lose and how can I have hyperthyroidism, and she stated that 15% of people gain or cannot lose weight with this. She said they can put me on medication and try that, but since I have had it before and it went into remission (as she called it) that it was not likely to work, or the chances were low, and even if it did, sooner or later I would have the same problem return.
I just bawled when I got home and told my husband. I know I should be thankful and that things could be worse, but I am 100 lbs over weight and if they kill off my thyroid, what in the world do they think will happen.
Plus she told me that I should not be getting my HR so high when I am biking. She gave me some ridiculous amount of about 120, and I told her, I can't even get out of my chair and stand up without my heart rate getting there.
I'm sorry but I am not going to quit riding my bike.
I just don't know what to do!! I am going to try the medicine route for now, but I'm sooo upset.
I just can't stand the thought of getting any heavier than I already and I don't know how I am going to exercise and keep my heart rate down.
It usually runs around the 180's when I am riding, and will get to 200.

I can't stand that I am 44 and I feel like my body is betraying me. The more healthy I try to eat and get, the more it seems to fight back.
I quit smoking, and am trying to eat healthy and exercise and now this comes back.
I know I am probably exaggerating my circumstances, and hopefully after I sleep on it I will have a better outlook, but right now, things kind of stink.

If you've read this far, thanks for listening. I'm sorry, I'm such a whiner!!!:(

[Becky]

((((((DDH)))))) Oh man....that sucks! Can you get a second opinion, particularly about the heart rate thing? I certainly wouldn't give up riding either!

I don't have much advice or good "feel better" words for you, but know that I'm thinking of and praying for you.

[Thorn]

Oh {{{Donna}}}...no words of wisdom, just compassion.

I'd be crying, too (Graves does wreak havoc on emotions, too). Of course, I'd probably be screaming and jumping up and down at the same time.

I second the second opinion. If it were me (and I'm a Graves in remission, too and dread getting into this situation), I'd go on the drugs while I wait for the second opinion. Start reading, and start building up the list of questions.

What are the odds of a second remission? (You know the odds weren't very good for the first remission and you beat that one!) Time to start reading, researching and applying that frustration to learning as much as you can while you wait for the second opinion appointment.

[OakLeaf]

(((((((Donna))))))) Sending good thoughts your way.

[ehirsch83]

Hey Donna,
Very sorry to hear about this!
What I do have to say is that having your thyroid removed and radioactive iodine isn't bad at all! I am 25 now and was diagnosed with thyroid cancer at 19. I had my thyroid removed and then radioactive iodine therapy. I take synthroid every day and my weight balanced out(I gained about 15 lbs before they realized what was wrong with me). I do tend to get sick easier then most(but I also have a tendancy to be too busy and wear myself down) but besides that I feel great. Being on synthroid gives me enough energy to work 40+ hours a week, go to school, and get in around 15 hours a week on the bike.

I hate to say it, but you might be better off just getting rid of the thyroid and knowing that you will become stabilized on synthroid.

hugs to you for all of what you are dealing with!

[LBTC]

Calm, healing butterflies headed to you, Donna, and hugs, too.

I know how it feels to have a diagnosis that doesn't quite fit, to not be able to do the things I wanted to, and to have gained weight and all the issues that go with that. My success story happened after I started seeing a naturopathic practitioner who does electrodermal screening (and an integrated massage therapist and an acupuncturist). Working with them I went from barely being able to walk the dogs around the block a year ago, to time trial racing and metric century rides this year. If you're interested, I can PM you more detail and can ask her to find a similar practitioner in your area.

Western medicine or alternative, I like the idea of a second opinion, and doing a lot of research on your own. Oh, and if you feel like crying - go ahead and cry...and picture the tears and pain flying away on butterfly wings.

Hugs and butterflies,
~T~

[Blueberry]

I don't have any advice to offer except to say that sucks.

(((((DDH)))))))

I think i'd get a 2nd opinion - 120 sounds low for a heart rate to be exercising. Is that short term or long term?

CA

[mimitabby]

I don't have any advice to offer except to say that sucks.

(((((DDH)))))))

I think i'd get a 2nd opinion - 120 sounds low for a heart rate to be exercising. Is that short term or long term?

CA

I'd get a second opinion. I mean it.

[NbyNW]

((((DDH))))

Just want to offer some words of support. My Dad got diagnosed with Graves disease a few years ago and it seems to be under control lately. I don't get to see my parents often, but my mother told me that the meds had a terrible effect on his mood and appetite, and being a Dr. himself, he was a terrible patient. I got the impression from hearing about all the adjustments to his meds that treating Graves disease is very much a case-by-case combination of science and art.

Dad gets most of his exercise from gardening. I don't think anyone was going to convince him to give that up.

It must be very frustrating to have this flare up again, especially when you've been working so hard to take good care of yourself. It's okay to feel everything you're feeling.

You're already a very strong person to have gone through this before. And I'm sure you're already an expert in Graves, but it sounds like the docs want you to try something different this time. Give yourself a little time, then dust yourself off and get that second opinion and do some research to make sure you're making the right decisions about your treatment. Remember, the doctors can only give you the best advice they know how -- the final decision about treatment lies with you.

Good luck, and lots of hugs --

[shootingstar]

DDH, hard to believe that even cycling slowly would be bad for you.

Get the 2nd opinion.
Keep us posted!

[cosc]

Donna, nothing sucks more than having your body betray you. Keep up the good fight. The girls gave you good advice- research and get another opinion.

[mudmucker]

They're not going to kill off your thyroid and leave you hanging there, with one of the most important glands having been removed. After they remove or destroy will RA iodine, they will monitor you and supplement with synthetic thyroid hormone if needed.

You definately want to inform yourself more, get other opinions and understand alternatives a little more, but I can't see remaining with the overactive thyroid as it causes too much stress on other organs. I'm unclear of the medications for this to keep it at bay without it being destroyed - I didn't go that route.

I am 48. When I was 22 I was diagnosed with hyperthyroidism. I also gained weight with it but only around 15 lbs, and kind of didn't understand that logic either. I think the overactive nervous energy went into the action of eating. They offered alternatives but I chose radioactive iodine.

When they do the radioactive iodine it's a ballpark dosage. They can't get it perfect so expect changes. For two years it was about normal and I didn't need any thyroid medication. Then it started to fall a little bit by the 3rd year they put my on Synthroid and I've been taking it ever since. I remember how I felt with an overactive thyroid (when I didn't know I had it and didn't understand why I was feeling the way I was). It was awful.

In my opinion, and with my own circumstance, I was thankful - an overactive thyroid is something they can actually fix!

[DDH]

Thanks girls for all the advice and sympathy. I am better today and thinking clearer. I know I should be thankful it is something they can treat, but all I was thinking about yesterday is how heavy I am and getting heavier would be even worse.

She has put me on methimazole (that is for the thyroid) and propranolol (to slow my heart down).

I picked it up this morning, and after reading through all the information, reluctantly took it. I am a terrible pill taker, have a hard time swallowing them, and remembering to take them. But I'd rather try this route than have surgery or do the RI treatment. I may change my mind later. I've decided I'm going to do some research and write out my list of questions for the next time I go see her. (the doctor)

I didn't mean to say that I couldn't exercise, but she made a statement about my heart rate not getting above 120 and that seemed impossible to me to be able to exercise and keep my heart rate that low.
Seems unrealistic, because right now, I can't even get out of my chair and stand up without my heart rate jumping to over 120. I know this only because I have left my HRM on in the past after a bike ride or getting on the tread mill, or there have been times that I was geared up and ready to go and sat down for a bit before I left.

Anyway, I have a bit better attitude this morning and it will get better as I have time to ingest it all.

Thanks for all your support, now I a going to go find the post with that had that link to a forum on thyroid issues.

[mudmucker]

What makes you think you are going to get heavier if you have this treated? Did they actually tell you this? In my case I lost the weight I gained and never gained it back. You are being treated to get back to a normal functioning system. My blood pressure was skyrocketed as well. It went back to low and normal and still is after 26 years. It felt good not to feel like crap, and that I wasn't going to die early from overstressed organs. It looks like you are trying to keep exercise as a lifestyle. Keep it that way. In the beginning maybe it might be hard to lose weight, if your blood pressure remains high for a while and you are prevented from exercising with the intensity that you want.

[DDH]

I have heard stories from people that it takes them a long time to get you regulated after the treatment and I would think, no thyroid no metabolism.
I have just been desperate to lose weight for so long and can't, and it literally scares the crap out of me to think I will get even heavier.
If I cannot with any intensity, then would I not start to gain more weight.
I literally spent a month measuring everything I ate, and counting calories and in that month lost 2 lbs. If it's that hard counting calories that closely and exercising then how hard will it be later if they kill off my thyroid. I realize they will have to give me medicine, but I would think you would gain while trying to get things right.
I'm reading up and doing some research so I don't sound so un-informed when I go back and ask more questions.

Right now, I think I'm just paranoid and thinking all the worst scenario first, and haven't wrapped my head around anything else yet. I hate thinking so negatively but I will kick myself out of my stupor.

[mudmucker]

Do your reading and come up with some good succinct questions for the doctor. Please keep us posted with your decision and situation.

It's been so long, I don't remember really how long it was when I noticed things improving - although I do remember it was 2 years until I needed thyroid medication.

As I posted earlier, I did gain 15-20 lbs. during the hyperthyroidism. Well, the hyperthyroidism can be gradual over many years but I think the weight gain was probably over a period of 2 years. I do recall though, after the RA iodine treatment, I did not gain any more and I lost it.

But bodies are different. I only had 20 lbs to lose. I do understand your fear, as I would have it too.

You have an autoimmune disease, so be on the lookout for other things, like pernicious anemia, which I developed about 16 years later. But you probably know this already.

[DDH]

No I didn't know that already. Thanks for letting me know.

[mudmucker]

Yeah, ok I know, like you need another thing to consider...

They can fix this too though! Easy. I need it mainlined. Monthly B-12 injections. Some people can take pills.

But to the present. As I said, please keep us posted. I am interested in how this turns out for you. This must be so frustrating for you.

[Kano]

I picked it up this morning, and after reading through all the information, reluctantly took it. I am a terrible pill taker, have a hard time swallowing them, and remembering to take them. But I'd rather try this route than have surgery or do the RI treatment. I may change my mind later. I've decided I'm going to do some research and write out my list of questions for the next time I go see her. (the doctor)and sat down for a bit before I left.


Donna, I can't make any suggestions on the swallowing part, but I too struggle with remembering to take meds on schedule. I have a new helper, though. Well, it's not really new, but it's fairly recently that I've realized it was here to take advantage of.

It's my cell phone - the alarm feature! I'm doing a uch better job of remembering since I set y phone to "holler at me" every day!

Karen in Boise

[Becky]

Donna, I can certainly understand your anticipated frustration with dialing in medication dosages. It seems to be a hallmark of endocrine disorders and one that I've been round and round with regarding insulin dosages. But it's always worth it in the end when I do get things nailed down and feel better.

Do you have a good endo who's being supportive in all of this? I seem to recall from your earlier posts that you weren't thrilled with her.....maybe it's time for a new one?

Hang in there!! *hugs*

[DDH]

Thanks girls. I'm actually doing a good job remembering to take my meds this time.
I have lots of research to do still and I need to get more organized about it, and start taking notes. So far I have just been reading.
As far as my doctor, she is a Endo doctor that I am just now seeing, hadn't seen her before. The one I was frustrated with was GP doctor, he always seemed to blow me off thinking I was fine. I have been telling him for a year, that my heart rate was so high and I was worried something was wrong with my heart, then I talked to him about my ankles swelling so bad and he gave me a water pill, but did nothing to see why this started happening to me, then I complained about the heat, and thought I was menaupausal but he said as long as I was having regular periods I was not yet going through menapause. So, I kept walking away with no answers. Problem is I'm on an HMO and I have to have him refer me before I can see anyone else. I have often said I need to change from him, I've seen him since I was 19 or 20 and I think he has gotten complacent with me. I dont' know, but I guess he didn't think about my graves disease coming back anymore than me, since I am sooo heavy and weight loss is a normal sign. Problem is, he did nothing to try to find out why I was so miserable. I never even said anything to him about my moods. LOL

Okay, now I have a question, I can't see the doctor again until after I have been on this medicine for a couple weeks and then she is going to check my levels again. Anyway, she told me not to get my heart rate up, but I can't do anything without getting my heart rate up.
Can anyone tell me why they wouldn't want you to exercise and get your heart rate up to an areobic level just because of this. I would think exercise would be fine, and that since I have had this going on for a year now, and nothing has happened and my heart is still fine, that I would still be good to exercise.
I rode this morning, but only went 11 miles and kept an eye on my HR monitor and tried very hard to go slow and not push, but still at my highest point it got to 170 when climbing some hills, is that bad? Most of the time it was in the 140 and 150's.
I dont' know, I just can't see how they expect you to sit and do nothing.
I need to get all my questions together about this stuff before I go in again. I have an appt for labs, and then I guess they will call me to see her again, like they did the last time after labs.

Sorry this was so long. I've searched everywhere trying to find some information about exercising with this and cannot find anything except for people to say not to do much.

Thanks for all the support girls.

[LBTC]

DDH - the experience I draw from with a thyroid issue was my darling fur-baby who was hyperhtyroid in his last few years. I hope you don't mind. Anyway, his poor heart really took the brunt of it. With his thyroid cranking, his heart worked overtime and became thickened (cardio myopathy) and, well, I don't remember all the things wrong with it, but the heart specialist vet told us after the ultrasound that those three problems can't all exist in one heart. He truly was on borrowed time that last couple of years.... From what they told me, I gathered that the extra work his heart was doing, just becuase his thryoid was making it run faster, overdeveloped the muscle. The muscle tissue gets so thick that the heart eventually doesn't do it's job properly as it sort of gets in the way of itself and also loses it's elasticity.

Based on the little I know about it, I'm thinking your endo doc is concerned that the more your heart works at that higher HR, the more potential there is for thickening. While the treatments should get your thyroid back to normal, it's possible that the damage it's doing to your heart in the meantime might not be reversible. Your body is precious - every part of it. Sometimes, as hard as it seems, you need to do just the opposite of what you think you need to do, to give it a chance to heal.

Sending you butterflies of patience, calm, healing and hope. You'll get through this.

Hugs,
~T~

ps - if you are interested in an alternative, natural method of testing and balancing your systems, that can work in conjunction with your medical treatment, let me know, and I'll tell you my own story and find someone in your area you can see.

[Duck on Wheels]

Hugs and butterflies from over here too, DDH. If it's any comfort, I cling to a line from a folklore lecture I have on an old LP. Supposedly this is something some really old Mormon elder said when asked how he'd managed to live so long:

"The secret of a looong life ... is to get yourself an incurable disease ...
and take care of it!"

So take care, DDH. Take it easy these two weeks, then ask the endo doc about the HR issue when you go back for your next check-up on the meds.