[RebeccaJF]

#1060045

Hi everyone!

I’ve been lurking for a while and trying to learn everything I can about Grave’s Disease and how to deal with it.

But lately I’m not dealing with it very well.

Back in March, I thought I was perimenopausal with heart palpitations and night sweats. In fact, I had had blood tests for a check up and was told all I had was a vitamin D deficiency and was slightly anemic. My “meticulous” doctor (who later apologized, ha, got a new one) totally did not see my non-existent TSH result at the bottom of the labs.

Later that same week, I was diagnosed when a heart rate of 160 woke me up at 4:00AM out of a deep sleep and landed me in the hospital for 5 days. Surprise! You have GD. What the heck is that? Sorry I asked.

So because I practically had a thyroid storm, they did RAI on March 14 and made it sound oh so simple that it would kill my thyroid and I’d just go on a
once a day pill for the rest of my life. Easy peasy. Ha!

After the RAI, the endo put me on Methimazole and I had blood tests on May 13, which showed my TSH was 81!!! So off the Methimazole and on Levothyroxine at 50mcg (apparently the Synthroid I had samples of was making me congested since you can be allergic if you have seasonal allergies). Found out when I called the endo this week to ask about the Vitamin D that she did not believe in generics (well, why didn’t she say that on the prescription before the pharmacist gave me the generic?). So 3 days ago started Tirosint.

All this time and I have never felt well at all. I feel worse. And the fact that I had to go through endoscopy, colonoscopy, small bowel follow through, FOBT, scared out of my wits because they kept telling me I have to have internal bleeding if I’m anemic, hasn’t helped. So far, haven’t found anything.

I would give almost anything for one minute of feeling okay, not well, just not awful. The worst part is, my family and friends are sick of my being sick. It just goes on and on and on. I think they think I’m just supposed to shrug it off and function as normal and simply ignore it. And I’ll be just fine eventually. Ugh. It’s like I’m on the outside of life looking in at everyone else going about their business.

It all came to a head last weekend when I think I got a stomach bug, lots of running to the bathroom, some vomiting, but I still don’t know if it was that or something else like gallbladder although there’s been no pain. But seems like my bowels are never normal anymore anyway, one day I can’t go, one day I go too much. I don’t know what’s hypo and what’s not. And the doctors drive me crazy, each one treating a different body part – endo, gastro, cardiologist…you can’t ask any questions that don’t involve their specialty, and my new primary care doctor doesn’t even want to see me until the end of August until the thyroid’s under control.

So I sit and wait and wait and wait some more, wondering what symptoms I’m going to have next. Next blood tests aren’t until after July 4th. I know I have to be patient (hate that word!!!) but sometimes it just feels like this is it, this is how I’m going to feel. And it stinks.

If you got this far, thank you!!!! Not even sure I made any sense, but feels better to vent.

Becky

[Kimberly]

#1179905

Hello and welcome!

I’m sorry that you’ve gone through all of this, but I’m glad that you found us. I would continue to push until doctors can give you a reason for the bowel issues and the vomiting. Even through it’s frustrating to wade through a variety of specialists, we often times need to be our own advocates to get a correct diagnosis. (As you found out with the Graves’!)

We do have members here who have been success stories with RAI and are happy with that choice, but I *really* wish doctors would do a better job of explaining the process of finding the “sweet spot” of replacement hormone after treatment. Many patients go into this treatment being led to believe that RAI is a “quick fix”. It’s *not* – but the good news is that you should start to feel better once your levels are normal and stable.

Getting the support we need from friends and family can be a real challenge, as we tend to not “look sick”. This thread had some nice feedback on that issue. http://gdatf.org/forum/topic/43580/

Take care – and please check back to let us know how you are doing!

[Gabe]

#1179906

Hi Becky and welcome…..vent away, we all have been there and done it many, many times. Sounds like you’ve had it very bad these past few months. As Kimberly mentioned there are many folks who have had great success with RAI and you’ll find them here. For some it’s relatively easy for others it takes long for the thyroid to ‘die’ and for the proper regulation of hormone to happen.

Patience is easier said than done,..believe me we know. Push your doctors to move up your labs, find a PCP that is willing to interpret and corral all your specialists, get educated, keep a journal of how you feel each day, and maybe soon you will have a good day.

I find that most people, even the most supportive, just will never understand how a once healthy individual, who still ‘looks’ healthy can be so sick. Come here when you need us, we certainly know how hard and frustrating GD can be.

Best wishes!

Karen

[allie]

#1179907

Hi Becky,

I’m so sorry you have not been feeling well Welcome to the forum!

I can totally connect with you just wanting to feel “decent” and not even above average for a day. I was diagnosed last summer (during my summer college internship) and had RAI in November. Since then I have been on the decline, which was not what my doctor guaranteed. I have been thinking about how things were prior to all of this Grave’s business hitting me, and it really puts things into perspective. Some of your symptoms sound really similar to mine and I understand because my family is fairly annoyed with my “cranky” personality haha…if only they knew what this was like!! Constant nausea, vomiting, bowel problems, fatigue….not exactly easy to keep a job, spend time doing fun activities, etc. I just graduated from college and keep wondering why all of this is happening

I agree with everyone else about continuing to push your doctors. I recently found a really good doctor who is helping me to do more lab work but it took a while to get that accomplished…I am still wondering why it wasn’t completed earlier, but I guess you just have to focus on the present. I also have an appointment at the beginning of July and am hoping for good news, but am trying to be patient.

I will keep you in my thoughts and prayers as well : )

[SueAndHerZoo]

#1179908

Hi Becky.
Sorry you’re going through this and please don’t hesitate to vent…… we here all understand. I myself have written my share of “I can’t take it anymore” posts.

I’m fortunate that I have a very supportive and understanding husband but as for the rest of my family and friends, no, they don’t get it. We look “normal” so they don’t understand what a struggle it is to just get through a day and they don’t understand why I don’t want to participate in any extra activities or social events.

It will get better. it has to. Finding the sweet spot is the challenge you have right now but once you do this will all be a distant memory and you WILL get your life back. I know… I was diagnosed 6 years ago, found the sweet spot, and even went into remission for a couple of years. Had I not had a truckload of stress this past year I might still be in remission.

Hang around here … we all understand what you’re feeling.
Sue

[karenz516]

#1179909

Hi Becky, Sorry to hear you are not feeling good, I had RAI on 12/14/12, and it took awhile to start feeling better. I am blessed with an awesome endo and aside from that his connection with patients (from my experience has been phenomenal). My husband loves this guy too and when we go to my appointments, my docs first question is “how are you feeling”. It is June, almost 6 months post RAI, and I saw him last week, I still complained about fatigue, muscle cramping (basically in my feet) and 15 lb. weight gain even though I have been eating as clean and healthy as I possible can, and no caffeine, no chocolate. He was not dismissive, he said everything I am telling him are a result of how sick I actually was. He said to me I don’t think you realize how sick you really were. I have to admit he was right about that. As a wife and Mom, I kept dragging myself to work everyday, I suffered horrible insomnia, vomiting, running to the bathroom, 30 lbs. weight loss, and my heart rate was 180 bpm (a-fib), on and on, all the symtoms “our Graves Gang” discuss, but I kept on going, probably making my health worse. When I was hospitalized for two weeks he started me then on Magnesium and Vitamin D which I still continue, I also take Biotin because my hair was thinning and it is now MUCH better, plus a multi vitamin Centrum. At this point my heart rate is usually between 55-70, and things are getting better. I have bad days still but much less than before. So I guess after all my ranting here, I am hoping to tell you that it will get better, my endo has me on FMLA for a year to cover the day here and there that I do not feel well or risk losing my job. My endo checks my TSH, Free T4 and Free T3, Magnesium and Vitamin D when I have my bloodwork every six weeks. He just upped my Synthroid to 100 from 88. Patience is his key word, I know it is hard, I miss running around and doing all the things that I use to do, and being a Type A personality all my life, it is hard to step back and let other people help. I felt AWFULL the first 3 months after my RAI I am here to say that at least for me, it does get better and if you have an endo you like and trust, it is a bonus. If you live around the Cleveland, Ohio area, PM me and I can give you his name or at least maybe you can call his office and they can refer you to someone he would recommend close to where you live. I hope this helps for you to know that we are all here to listen and help. I read and listen to what everyone on this forum has to say, it makes me feel better and makes me feel that I’m not crazy or alone.

[ChristinaDe]

#1179910

Karenz516 ~ Sounds like you have a wonderful endo. I still haven’t found one I like. Mine made me feel crazy when I didn’t immediately feel better after the tapazole brought my labs into normal range. Wish I’d had yours! Cuz the doc is so right – we start off very sick. We don’t immediately feel “well” the second our labs are normal. In my opinion, that’s when the true healing begins – the day after our labs become normal. And then, only if they stay consistent. So I truly believe the wellness clock starts there – and then it’s just a matter of time (and vigilance!). Sounds like your doc does too.

I’m on the exact same supplements you are – and I think they are a huge part of my feeling better, of healing the damage done by hyperthyroidism and that racing metabolism. It’s all a bit gradual tho, isn’t it?

Christina

[karenz516]

#1179911

@Christina, veryyyyyy gradual, took 6 months of gradual.

[Stymie]

#1179912

Hi Rebecca! Welcome.

I felt the same as you. I had RAI last September and went severely hypo in November. Started Levo and felt horrible. You’re right people with allergies have difficulty with the fillers in some of these drugs. I am on tirosint also.

I have felt much better since switching to tirosint. But I feel as though I’m not back to my normal self yet. I’m vit d deficient and just recently started taking some B12 which has helped some with the anxiety.

I hope you are feeling better soon. My family seems to think I should feel fine now. Take your pill, be on your way. Little do they know its just a tad more complicated.

Wishing you the best.

Diane

[SueAndHerZoo]

#1179913

Stymie wrote:

Hi Rebecca! Welcome.

I felt the same as you. I had RAI last September and went severely hypo in November. Started Levo and felt horrible. You’re right people with allergies have difficulty with the fillers in some of these drugs. I am on tirosint also.

I have felt much better since switching to tirosint. But I feel as though I’m not back to my normal self yet. I’m vit d deficient and just recently started taking some B12 which has helped some with the anxiety.

I hope you are feeling better soon. My family seems to think I should feel fine now. Take your pill, be on your way. Little do they know its just a tad more complicated.

Wishing you the best.

Diane

Hi Diane. You mention B12 helping with “the anxiety”. Do you think the anxiety is a direct result of your RAI or was it there before? Curious why you would have anxiety (at least thyroid-related anxiety) after you had gone hypo. I was thinking (and hoping!) that the anxiety reduces greatly once the thyroid isn’t racing anymore.
Sue

[Stymie]

#1179914

Hi sue.

It’s very odd. I was not the normal hyper patient. I never had anxiety while hyper and I gained weight as well. Had a hard time losing it.

I started having anxiety issues when I started taking Levo.

I’m really not sure why.

I do think the B12 is helping me though. I was at the low end of normal…

Diane

[msled]

#1179915

Hi Becky,

Know that you are not alone. I have also been struggling to find the ‘sweet spot’. My dose has been changed so many times in the past two years that I have kept a chart of what dose, blood work results and how I felt at the time. My problem seems to be that I need estrogen for post menopause problems. I have found out that estrogen blocks thyroid receptors which means if my dose is not increased by at least 30% I become hypothyroid (big time)….sleep all day and barely enough energy to feed myself. Then the Dr. changes my dose and I go way too high very fast, panic attacks/ anxiety and insomnia. Right now I have some hypo and some hyper symptoms. Dry mouth so bad that my teeth hurt and I was just at the dentist last week. So again I have to get rid of the patch and try to go with out the estrogen. I had to drop my dose as I was literally going crazy, afraid to leave my house to walk my dog and driving my friends crazy. My children will not help me..I was told not to bother family or friends…learn to deal with it yourself.

Now I find out that all of my antibody tests were negative so I probably never had graves to begin with!!!!!
Marg

[Stymie]

#1179916

msled wrote:

Hi Becky,

Know that you are not alone. I have also been struggling to find the ‘sweet spot’. My dose has been changed so many times in the past two years that I have kept a chart of what dose, blood work results and how I felt at the time. My problem seems to be that I need estrogen for post menopause problems. I have found out that estrogen blocks thyroid receptors which means if my dose is not increased by at least 30% I become hypothyroid (big time)….sleep all day and barely enough energy to feed myself. Then the Dr. changes my dose and I go way too high very fast, panic attacks/ anxiety and insomnia. Right now I have some hypo and some hyper symptoms. Dry mouth so bad that my teeth hurt and I was just at the dentist last week. So again I have to get rid of the patch and try to go with out the estrogen. I had to drop my dose as I was literally going crazy, afraid to leave my house to walk my dog and driving my friends crazy. My children will not help me..I was told not to bother family or friends…learn to deal with it yourself.

Now I find out that all of my antibody tests were negative so I probably never had graves to begin with!!!!

Marg

What treatment did you choose for your graves?

Diane

[RebeccaJF]

#1179917

Hi everyone!

Thanks so much for the warm welcome and all the wonderful advice. I really appreciate it. It’s nice to not feel alone and since this started, I’ve definitely felt alone at times.

Just for a little background, I think I’m so impatient because this has been a rough 15 months and I’m ready to feel better and have some fun, and actually enjoy life. It’s been one depressing thing after another lately. It started 3/19/12 when my Mom passed away from complications from a stroke. She was 87. Ok, I dealt with that. Then my husband fell 25 feet off a scaffold at work on a school in south Philly on 9/19/12 (what’s with the 19th?) and broke both of his legs and had to have titanium rods put in both legs. Could’ve been worse, thank God there were no head or spinal injuries. He’s recovering but we don’t know if he’ll ever work as a mason again. So it’s no wonder I ended up with Grave’s. Then Ed’s Dad passed away 5/12/13 from cancer. I know life can be very rough and we all go through tough patches. But it’s just like all the life has been sucked out of life lately.

I feel bad for my kids. My son Charlie is 11 and my daughter, Jodi, is 10. They lost 2 beloved grandparents within a year and have had both parents down and out. Through it all, they’ve kept up with schoolwork and activities. They’ve been amazing! But they’ve also learned to be more independent, which is a good thing out of all this.

Kimberly – Yeah, when the endo in the hospital explained the RAI, he said it would be a while before things were right, but he made it sound simple, simpler than it is that’s for sure.

Karen – Gabe – Guess I should be glad the RAI worked so quickly because they told me 2-6 months. I just feel like a yo-yo. The TSH going to 81 surprised everyone. Wish they’d caught it sooner, but who knew? No idea how long that high a TSH takes to come back down.

Allie – Congrats on graduating from college! That’s an amazing accomplishment considering what you’ve been going through! I hope things will get better.

Sue – I just keep repeating…this will be a distant memory…you will get your life back.

Karen Z – can totally relate, wife and Mom syndrome, it’s true, we don’t take care of ourselves and run ourselves into the ground…until I finally landed in the hospital, then I had no choice. Guess that’s why we get smacked with it, to remember to slow down.

Diane – glad someone else is on Tirosint as well. Praying this works. You would think drug companies would learn not to put all these fillers and binders in things with all the allergies around. That’s probably WHY there are so many allergies. And to have trouble with a pill you need to live, yikes. My vitamin D was a 7 back in March, now it’s up to 90 so I stopped supplements temporarily. And I had the series of 3 B12 shots so that’s better as well. And I still have anxiety and panic attacks here and there. I think our bodies have yo-yo’d so much, they don’t know whether to be hyper or hypo.

Marg – you might not have Grave’s???? That’s scary! They did the antibody test in the hospital, so I know I have it. But I’m approaching menopause, too. That’ll probably throw a monkey wrench into getting to the “sweet spot” and staying there.

Again, thank you to all!

Here’s to all of us getting better and starting to enjoy life again!

Becky

[bigad]

#1179918

Hi Becky,

When I saw south Philly my eyes lit up- I’m in Philly too. I have to stay away from south Philly though…too many good cheese steak places. I’m trying to eat healthier these days.

Sorry for the rough 15 months. I do hope you are able to feel better and enjoy life. I was diagnosed with GD last month, so I’m early in the treatment process. Hang in there!

James

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