[KNEENAH]

#1058831

Hi, I am new to this site. I found it curiously while surfing the web. I am 29yr old female. I weight 242 I am 5’5. I was diagnosed with Graves when I was 24. My first symptoms were tachycardia(rest 115-120) shortness of breath and aniexty. I work for a cardiologist but a endo was renting space from us at the time. Out of curiousity my coworker and I though hey lets check my TSH. Well i dont remember the exact numbers but i think they were something like tsh 0.064 and my T3 and T4’s were high. The endo sent me to get a ultrasound which showed i had 4 nodules. I ended up switching to a more experienced endo he sent me to have a Uptake Scan. I was then told I had graves. At that time i didnt know the history of graves and didnt take it seriously. I took Trapozole for a few months then stopped it cuz i felt they were giving me more shortness of breath. I stopped the meds for 3yrs but continued to check my levels which were back to normal. I was feeling good. Never had any more symptoms of anything. I also had remembered the doctor telling me that i didnt have to take the medication for that long so i figuered i was cured. Now back in May 2011 I was experiencing shortness of breath so i started to take natural meds called thyroid factor. It could have been just all in my head but i felt my symptoms get better so quickly. June i came out pregnant but sadly on aug 26th i had a miscarriage then on Aug 28th my older sister ended up in a coma from a brain bleed and it put so much stress on me my aniexty came back and i felt my neck hurting everyday. Nov I ended up seeing another endo because mine wasnt available till months later. She took some blood when it came back she said everything was normal but i had High antibodies which put me in a hasi level but everything else was normal. She still sent me to get a ultrasound. I had it done went back to her and she mentioned the nodules and asked for me to get it biopsy. At that visit i was starting to experience weird discomfort in my left eye she said it had nothing to do with my thyroids and i didnt have graves. Confused i went had the biopsy which came back normal i desiced to get another opinon (btw i also went to see a eye doc which he said was just dry eyes) I went to see another endo and by that time i was experiencing muscle pain on my arms and aniexty to the point where i felt like there was something terriable wrong with me. I am hypercondriac as it was but this was crazy. I started to get hand tremors (keep in mind my father then pasted away in Nov from untreated thyroids {long story}) So now its Dec and this new endo ran a bunch of test on me and results came back normal TSH but slightly elevated T4. He said it looked like i was getting out of hyperthyroid remission stage. I went had a uptake scan which also came back good. Due to my symptoms which he said sounds like my thyroids he put me on PTU (Cuz i am trying to concieve) and Atenolol cuz my palpitaion and tremors.

My thing is I started taking these pills a wk ago when will it start to work and will it help with the muscle and joint pain?

Is living with graves hard?

Will i ever be back to normal?

How is it pregnant?

I am sooo scared of life now. My hypercondriac is really driving me crazy. I am schd-ing appointments to every doctor i know. My boyfriend says he is surportive but i dont think he understand how it really feels. Sometimes i dont want to leave the house scared ill get aniexty or muscle pain. I wake up fine but through out the day my left arms starts to hurt its not dying pain but its there. At night i get little aniexty because i think so much about it. I have appointment with a otho doctor on friday cuz i am in denial and want to rule out pintch nerve cuz the pain, i have a rheu appointmen on monday cuz i want them to tell me the pain will go away. its honestly taking over my life. Ive been so emotional lately that when i think about it i cry. I just want to be myself again. I just need someone to be honest to me and give me their opinon based on my story. I have big eyes but i think its naturally my eye size. Who knows:0(

[Ski]

#1170283

Hi Kneenah!

My goodness, you have been through it, haven’t you? I’m so sorry to hear that you’re not feeling well — being on the meds will definitely help, but it’s kind of an art, finding the right dose to make your levels normal, and stable, so up front it’s a little frustrating. Add to that the fact that you really need to achieve normal, stable levels before your body will really begin to heal, and it becomes apparent that patience needs to be your best friend right now.

The emotional struggles are very common with Graves’, and they DO get better, and you DO feel better, eventually. At this point, the best plan is to remember that you’re lucky to have the right diagnosis, be grateful that you’ve begun treatment, and look for small improvements each day. You may have a bit of a seesaw ahead, as the med dose is “dialed in,” but you will get there. Closer every minute, as I used to say to my kids on long road trips.

The muscle pain may be due to the “muscle wasting” that can occur when you are hyperthyroid — it happens mostly in the large muscles, so the upper arms, upper back, and thighs are commonly very weak, and very sore, after a period of hyperthyroidism. I remember feeling like I was 100 years old, just trying to get up out of my car. As your levels fall out of the hyperthyroid range, and stay out of that range, your muscle mass will begin to return, and that’s the first step to healing. It means a bit of weight gain, but it’s GOOD weight gain. The trouble is that it’s “baby” muscle tissue, that needs very gentle, careful work in order to return to the healthy, strong muscle tissue you have lost. I’ve heard of people having to begin their “work out” (once they’re cleared by the doctor to begin working out again, of course) by lifting paperback books, because they had lost so much strength while hyperthyroid. If you can get to a physical therapist, that’d be a useful trip. They can help you find out where you are weak, and where you are strong, and develop a plan for building the weak muscles back up without hurting yourself.

Living with Graves’ is… oh, help me out here, everyone in the BB-world! I would say it’s different than it was before Graves’, it’s tough sometimes, it’s hard for other people to understand, but it has the power to connect us with some really wonderful people, and it also has the power to teach us a lot about ourselves. You’re going through a rough spot right now, but you’re on the road to being well, and you’ve found a good source of information and shoulders to cry on (yep, we know you need that ~ we’ve been there!) to support you along the way and share the knowledge you need to navigate your treatment.

Try not to let your fear isolate you, by the way. Be realistic about what you’re willing to tackle, and then do that. If it’s only an hour out of the house for a walk around the neighborhood, take that hour and enjoy the heck out of it. Do whatever’s manageable for you, and don’t apologize to anyone. If this were a different medical condition (for instance, if you broke a leg), everyone would bend over backward to help, but they don’t understand how ill you really are, and they won’t. You can try all day to explain, but most people won’t really get it. It doesn’t make them unfeeling, it’s just human nature. One of my best friends told me she had Graves’ Disease about a year before my diagnosis — told me a lot about it, we discussed it at length, and I remembered absolutely nothing a year later when my doctor told me I was also now dealing with Graves’ Disease. Unless you’re living it, you just don’t really understand.

So I hope this helps a little! Stick around, search up things that you have questions about — we’re here to help!

[Ski]

#1170284

Oh and as for pregnancy — there are many women here who have Graves’ as well as beautiful, healthy children born after their treatment. Do a search on pregnancy and you’ll find a lot of great information. It’s important to have STABLE thyroid hormone levels before attempting pregnancy, for the best chance at success, so that may be a little way down the road for you. Once you become pregnant, you’ll want to draw together a team of medical professionals for the care of you and your baby, because it can qualify as a high-risk pregnancy, and the more people you have watching out for you under those circumstances, the better.

[KNEENAH]

#1170285

I have been desperately waiting for someone to reply to my post. Thank you soooo much u really brought tears to my eyes.. Someone that understands me. It feels like my life is changing and everyone around me isnt. I am so happy i found this site. Although reading some stories kind of freak me out but i know not everyone with graves experiences the same things. My sisters half sister from her dads side has graves she was diagnosed at 9 and is now 26 and has been off meds since 2010. I dont really talk to her cuz like i said she is my sisters sis from her dad side and she lives in V.A I am in NYC… I did my research a little on graves but when they mentioned muscle weakness i didnt know u lose muscle mass tone. Funny cuz my thighs hurt too i figured it was related such a bad experience. I normally take a nice warm bath with a side of chamomile tea and it relaxes me. I sometimes have a hard time falling asleep cuz i am constantly thinking and the pain is so something ive never experienced that i get worried and cant sleep. I find myself spreading tiger bam lol.. I am so happy to know there is relief to this madness. I am suppose to see my endo on the 13th to have my blood draw.. I cant wait now to see what he says.. U just made my night.. :0)

I am taking PTU 50mg once a day and Atenolol 25mg once a day..

thanks Ski

Nina

[Healingcc]

#1170286

Keenah,

Glad you got such a lift from Ski’s wonderful post.

I am recently through with using I131 to treat my Graves. My treatment was based on a different set of circumstances so I have no experience waiting for the anti-thyroid drugs to take effect.

I do have experience with the “crazies” and the muscle pain. I walked off the golf course after screaming at my husband during my worst time. I have never, in 31 years screamed at him, and it was about a golf game. Even when you “realize” you are acting bizarre, the ability to stop and change directions seems impossible. I found it best to later, revisit the situation and give myself a break! Give yourself a break for awhile, and work on relaxation skills. Get some tapes, or CD’s that play relaxing music with slower beat. That can help to focus you, lower the heart rate a little and allow you to relax and get to sleep! Mind/body interaction is so important in every day life, in Graves, that is exaggerated too.

All those things, the eyes, the muscles etc have to be put into their own basket and viewed as temporary while you start to heal. I talked to my endo about trigger fingers that “i woke up with” Response: Everyone has different symptoms, I don’t know. I went to a hand surgeon, who immediately told me it was about swollen tendons resulting from my thyroid imbalance. Shouldn’t the endo docs know this?

I am on my way to 60 these days, and pointed out to the endo doc that patients, especially as we are getting older, feel 10 symptoms that no one pulls together make us feel like we are “falling apart”. If they could simply re-assure us that many are parts of the same process, they become easier to deal with. Hope you can find one of these doctors to really rely on, who will really listen to you. When you have confidence you are on the correct path, you will also relieve much of your stress!

Hang in there, you will get there!! If you can, Focus on getting your body healthy before you take on growing another little person in there. You will thank yourself later. As you feel better and rebuild muscle, you will be so much more comfortable carrying and birthing a baby!

My best,
CC

[KNEENAH]

#1170287

Thanks Healingcc, I am really trying to get my body together before i try to concieve again. Its a emotional rollercoster sometimes. I know what u mean when u said u yelled at your husband over a game. I sort of did the same thing the other day then last night i spoke to him and apologized.. I am sooo desparate to get better its scary but hey i cant rush things. :0/ and yea your right doctors should be clear when they talk to their patients. I feel when they know u have thyroids they want to blame everything on it. You go in with a headache and they know u have thyroid problems they right away say its from your thyroids. I just want to get better so i can just stick to my one doctor. :0/

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