[Bobbi]

#1064840

Hi, juneknoel, and welcome to the Board. There was a double post of this message, so the extra one has been removed.

It does not sound to me like the communication between you and your endo’s office has been completely successful. I realize that endos are busy and rely on their nursing staff or their PAs to field questions in between visits, but when you are getting started with treatment, I think it is important to talk to the doctor when issues arise. The symptoms that you are describing do indeed relate to thyroid hormone levels, and it is possible the nurse is dead wrong to tell you that they are not. The only way to check is via blood work. If your level of medication was not changed in June when you saw the endo, it might be a good idea to call and ask for another blood test. My endo’s office will allow patients to do that, but some endos do not. But it is worth a try. The thing is, if your levels were "better" but not "normal" then, it is possible that they are still NOT normal, and if they are not, then the symptoms could very well be thyroid-related.

(If, however, your level of medication was changed slightly when you saw the doctor, you might have to wait another couple of weeks in order for the blood test results to be more accurate. It takes time after dose changes for our blood test results to "catch up" with our actual thyroid levels.)

A really important point for you, though, is that you MUST get rid of hyper levels of thyroid hormone. Allowing yourself to remain even a little hyperthyroid will not allow your body to heal. You need it healed so that you can go back to your normal life and doing the things you love. If you cannot take sufficient methimazole to get you back to normal (because of the itching) there are other options, typically. And don’t try tinkering with the medication dose by yourself. You and the doctor cannot tell how much works if you are not taking the prescribed dose as directed. Tinkering will only delay you getting healthy again.

Good luck.

[lhc11]

#1064841

Hi there — I just want to reassure you that you are NOT losing your mind and that this WILL get better. I am also a type A, with a 20-year history of off-and-on anxiety issues, but when my Graves’ set in this past February, I felt anxiety like I NEVER have before; in fact, even after my hyperthyroidism was diagnosed I was still worried that I might have become bipolar–that’s how bad it was, and it took almost exactly two months after that (I was lucky it was so short a time period) to feel like myself again–and that’s even after my levels were getting "better." I was thoroughly convinced I was losing my mind on top of the Graves, and despite what anyone said to me (in part because I did feel physically better after only a few weeks on methimazole) I couldn’t believe that what felt completely psychological to me was in fact thyroid related. IT WAS. How you deal with your endo is a separate issue, but again, I just wanted to chime in and say HANG IN THERE–I am very recent proof that feeling crazy can be a major part of the package and that it does eventually go away. It’s hell in the meantime, I know–trust me, I know. You’re lucky in that you’ve found this board much earlier in the "feeling insane" part of things than I did–I didn’t know about it then and just sat in my house feeling nuts all the time when I could have really used this community to vent about how I felt. So vent away! (By the way, I am also someone who opted for surgery over RAI. I am not recommending one over the other, just letting you know that if you search for my posts with my username, you’ll find my extended musings on figuring out what I wanted to do).

best,
lhc11

[juneknoel]

#1018439

Here’s my story…

I am 24 years old, Type A female and was diagnosed with Graves Disease about 4 months ago. No family background of Graves Disease although my grandmother had something wrong with her thyroid, not Graves though. I started feeling "real" symptoms right about January of this year 2010. My doctor couldn’t really tell how long I’ve had it. But prior to my symptoms, I was very active. Just a year ago, I was training for a triathlon and working out at least two hours a day. I have ran a marathon before, ran half-marathons.. so you could get an idea on how active I was. I am also in the National Guard and Army ROTC program. I loved working out until I started feeling crappy

Right around January, I started feeling fatigue all the time. I thought I was just getting too tired from working out and I needed a break. So I of course slowed down on my workout a bit. And then I started getting diarrhea, like I would eat and 5 minutes later I would have to go to the bathroom. And then everytime I would work out, my heart would beat sooo fast and its really scary that I had to stop. I get dizzy, light headed, blurred vision, basically just felt like I was going to pass out. Then I would just sweat like crazy! I thought I was just getting really stress with school and other stuff. So I just kind of ignored it. Until one morning when I was doing my normal workout, I seriously just almost passed out. I was taken to a health center, they did some blood tests right around March. About 2 days later, my doctor called me and told me my thyroid levels are going crazy. So I talked to him and he told me to get my thyroid scan. He called me a day later after the result was out and told me that I have Graves Disease and that he’s going to refer me to an endocrinologist.

So I started seeing my endo in March. I have been researching stuff about Graves Disease and reading other people’s stories about it. He told me that I should probably try Methimazole first for a year and see what happens. If a year from now I’m still not feeling better, then we’d do RAI. While this is all going, I was feeling worse that I missed school for 2 weeks and couldn’t train with ROTC because of heart palpitations and just not feeling good. So I started the treatment and about a month later, I started itching really bad. I waited for a week before I called my doctor because I couldn’t really figure out why that was happening and tried to remember if I did something different. So I called him and his nurse talked to me. She told me that they don’t think that I’m allergic to Methimazole because if I am, I would have had an allergic reaction to it during the first week or so and told me to try not taking my meds for a week. So I did that and of course the itching WENT AWAY but then I also started feeling like crap again and this was my finals week too in school. So I’ve read somewhere on the internet in a forum that maybe my dosage was too high, so I decided to take it once every other day to see if it works. It made me feel better so I could at least not miss school during finals and keep my job.

I saw him again in June 14th and he told me that he could’ve been wrong, sometimes the meds take awhile to kick in so maybe you did have an allergic reaction to it. I told him that I’ve been taking it every other day and it doesn’t make me itch. I’m not on bedrest but I also don’t feel like I am back to my normal self is what I told him. He told me to keep going with my treatment and get my blood tests done. I did a blood tests right after that and called me a day later and said that my levels are getting better, normal. But I still wasn’t feeling normal AT ALL. I still have diarrhea etc. I thought I’d give it sometime. Now, I am having ANXIETY issues bad. I cannot sleep anymore. I haven’t slept in three weeks. I still have diarrhea, tried working out, but I would still get the scary heart palpitations. My emotions are SOOO out of whacked. I feel like I am seriously losing my mind.

I called him and talked to his nurse and she told me that it’s not related to graves disease anymore and I should see a different doctor for my anxiety issues. I really don’t know what to do. My thyroid levels are fine he said but at the same time, I feel like CRAP. I’m really frustrated and probably not helping this at all.

Sorry if this message is really long!!! I am just really worried about this!!!

[AnnieO64]

#1064842

New poster to forum–hi everyone.

I was just diagnosed with Graves in August and it’s been a whirlwind of emotions. I tried methimazole and after 3 weeks had an allergic reaction (hives, rash, itching). I’m off the meds until the hives go away (they’re still here after 10 days). Doctor wants to try PTU which makes me nervous because of the "black box" warning of liver damage/failure. I am sure that the decision of the RAI vs. surgery will become more pressing in the next few weeks. My doctor says that RAI is considered more readily because it is a less invasive treatment and I get the feeling that surgery is not really an option. I am considering a second opinion. I did have the iodine uptake test which confirmed graves and did not show any hot nodules.

The outward symptoms of this disease are minimal for me and some of my co-workers have actually joked that I must have made it up because I look and work the same. Inside I am going crazy with anxiety and rapid heart beats. I rarely sleep well and the crabbines–whoa! My husband thinks that if you have a positive attitude, you should feel fine. Anybody know of a topic summary I could give him so he could read it and understand it from 3rd party perspective? All of my doctor appointments, ER visits (for the hives) and such, I ‘ve done alone. It’s nice to find the support here.

Thanks! Annette

[Krystal25]

#1064843

These posts are great! I to am new to GD and was just diagnosed as of last week. I am having some similar symptoms as well. I am so glad to read to the post from IHC11 regarding the fact that even after being diagnosed the person still felt as though they were bipolar. I to have been feeling like maybe it’s not the GD that is causing all of these horrific symptoms and maybe I’m just truly going insane. I was feeling like I was starting to dissociate, meaning sometimes I am feeling so panicked that I feel outside my own body. Such a crazy scary feeling. Thanks for the great post, it truly made my night!

Also to Annie- I am sorry that you are going through this, it is a very scary time. Just remember your not alone! Your husband sounds just like my mother. She keeps telling me you are not the disease. I am internally angry everytime she says this because I try to be positive, but the disease sometimes overpowers my ability to be overally happy. I am hoping once I get regulated this will not be such a daunting task. As for the hives I’m on methimazole and haven’t experience any hives but best of luck. For the insomnia I have been using melatonin which is a supplement and it has been helping me sleep at night, I’m not a doctor but I try to do more herbal things to help allievate the symptoms I am having. Trust me just sleeping better can make a world of difference. One question, so right now are you on any medication for the hyperthryoidism? Best of luck to you! You will get through this! Big hugs ” title=”Smile” />

-Krystal

[Kimberly]

#1064844

Annette – Sorry to hear about your diagnosis…and the fact that your family and co-workers have been less than supportive.

There is a great resource available on our web site that should be helpful for your husband. Go to the home page and click “Publications”, then click on “Psychosocial & Emotional Effects”, then click on “An Open Letter to Husbands of Graves’ Patients.”

Hopefully, this will help your husband understand that (1) you are not alone and (2) this is a disease with a *physical* cause that requires appropriate treatment and adequate time for healing. Although keeping a positive attitude is certainly useful in regaining our health, this is *not* a condition that we can think our way out of with “happy thoughts.”

You might also try clicking on “Community” and “Find a Support Group” to see if there is a support group in your area. Finally, we have a conference coming up Oct. 22-24 in San Diego…it is definitely helpful to be able to connect with other patients who “get” how serious this disease is…even though we might not look sick.

Best of luck!

[Kimberly]

#1064845

Krystal – I seriously believe that I had a bout of undiagnosed Graves’ in my 20s, and I did have that “out of body” sort of feeling that you describe. Oddly enough, I did *not* experience this when I was diagnosed in 2007. We know that every patient is a little different when it comes to Graves’…but I guess each phase of our Graves’ journey is different as well. Best of luck to you!

[AnnieO64]

#1064846

Good morning everyone!

Thanks for the helpful responses–I TRULY appreciate it.

To Krystal–I am on nothing at the moment for the hyperthyroid except propranolol to help with the racing heart. We are trying to get my immune system to "settle down" with these hives/rashes. They are getting better so probably next week I will begin PTU. Hugs back at you!

Kim–your resource information is very helpful..thanks so much. While I agree that a positive attitude helps, it doesn’t make the disease go away. I am still a mom and full time professional so I cannot stop my life because I am not sleeping well and feel crappy (oh, last night was a doozy–I think I had 2 1/2 hours of total sleep)–you just push through the best you can. It just seems that unless I’m flat on my back sick, people I know cannot relate to my health issues. When my boss asked me how I was this morning and I mentioned I didn’t sleep well because of the anxiety and heart palpitations, I got a very annoyed response.."still?" Well, yeah, still…it doesn’t magically evaporate just because I saw a specialist. Oh well.

So…to end my post on a positive note…a joke…

Question: What does an eskimo get from sitting on the ice too long?

Answer: Polaroids!

Everyone have a great day….A.

[Ski]

#1064847

Just wanted to send a quick note about sleep ~ it’s important to do whatever you can to get rest, but try not to get too anxious about it, because that can begin an emotional insomnia that is much harder to solve than the physical "revving up" from Graves’. Keep in mind that laying in bed and being still is *nearly* as good for your body as actual sleep. Do what you can to take advantage of all the natural sleep suggestions ~ you know, no caffeine or alcohol in the evening, develop a sleep routine with a hot bath or shower, make sure your room is dark and quiet (no TV to "help you relax," it’s actually a stimulant as well, what with the frequently changing images and brightness), and, if you find yourself getting anxious, just go ahead and get up and do something quiet (reading, for instance) until you feel drowsy again. If there are parts of the day when you are able to nap and you have a good place to do that, take advantage.

Above all, keep in mind that this is chemical, it will improve once the imbalance is corrected, and you’ll get through it. Everything Graves’ is helped by a Zen-like attitude, so do what you can to cultivate that.

Wishing you luck! Glad you found us.

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