[Ski November 14, 2008 at 9:11 pm Post count: 1569]

#1075359

Hi Jill,

Welcome ~ I know you didn’t want to join the club, but we’re glad you found us. ” title=”Very Happy” />

We’ve all been through it, reading your post brought it all back!! No fun at all.

The fact that your levels are dropping is a good thing, and the disappearing symptoms would indicate that you’re on the way to health. Now, about your hair ~ it does lose "support" because when your body is sick, the body withdraws resources from the hair and nails when it feels as if it needs those resources for more critical issues. Thyroid issues in particular trigger this response. It’s possible that your hair was simply weakening throughout everything up until now, and suddenly is coming out rapidly. It won’t leave you bald. Since your levels are improving, this should stop once your levels have arrived at AND STAYED AT normal levels for some time. Your body is literally under attack when you are hyperthyroid ~ thyroid hormone is the "fuel" for every cell ~ and the effects on your body are widespread. Once you reach normal thyroid hormone levels, your body can BEGIN to heal. It seems as if you’re getting there, so hang in and you may start to notice small improvements. The hair and nails are the last thing to return, so in the meantime you may want to find yourself a cute short haircut that minimizes your troubles. The advice is no coloring, no perms, no rough brushing or heat appliances, etc. etc. It WILL come back, I know it’s true.

Please, keep reading, keep asking questions! We’re here for you. Don’t give up on your dream of children. It may be a little while before you can try and expect success, but take it easy and don’t fret. Be kind to yourself now, please. It’s an assault. We don’t LOOK all that sick, but we feel AWFUL when we’re going through it like you are now.

All the best to you, and again, welcome.

[skichick732 November 15, 2008 at 1:08 am Post count: 6]

#1019976

Hi. I found this board today and was really happy that maybe I could talk to people that understand what I am going through. I happen to be sick with bronchitis right now so as you can imagine I am not in a good place today anyway. I will try to keep this brief but I am betting I won’t be able to do that. Within the last 1.5 years, I moved, changed jobs, bought a house, got married and was diagnosed with Graves….Phew…Not to mention, my job is very stressful and I am the main bread winner. My symptoms came on gradually but all seemed to peak all at once. I would notice that I was out of breath walking up stairs, my legs muscles seemed so weak when walking, my heart seemed to race even when I was in bed…I used to be a good public speaker but all of a sudden I was very nervous, sweaty…I was hot all of the time and had awful diarrhea. I just thought that I was old, out of shape and stressed out…. I was so tired all of the time. I thought I was going crazy. I finally went to the doctor and she immediately put me on Tapazole, metaprolol and sent me for an uptake scan, ultrasound and referred me to an endocrinologist. The scan confirmed Graves. I had to be taken off of Tapazole b/c it impacted my liver function…I then started PTU. This was in June of this year. Between that and the heart pill, I think I was talking 10 pills a day. I did start to feel better…my heart wasn’t racing, my blood pressure is better and I was sleeping better. The diarrhea also has improved. Over the 5-6 months that I have been treated, my meds have been steadily decreased to 2 PTU pills a day and 1 metaprolol. I have gained 20 pounds and now my hair which was not thick to begin with is coming out by the handful. I am just about at the end of my rope. I pray and I know that other people in the world are suffering much more than I am so I feel guilty even writing all of this. I just can’t remember what it feels like to feel good. My husband does not complain but I know that this is not what he signed up for. We were also trying to have a baby which now is on hold. I turn 41 at that end of the month so my time is running very short for that. I am not sure if I really have any questions – I just never told anyone how upset I am and everything I have been going through while at the same time trying to live a normal life. Thanks so much for listening.

Jill

[skichick732 November 15, 2008 at 1:13 am Post count: 6]

#1075360

Thank you so much Ski. I know you are right! I see my endo next Weds for another blood donation I feel better just knowing someone out there understands. I was thinking about getting my hair cut – maybe that would give me a boost! Have a great weekend – your help is invaluable.

[npattersonModerator November 15, 2008 at 8:39 pm Post count: 398]

#1075361

Dear Jill,
You will find lots of people here that understand. Many of us have been right where you are. There IS a light at the end of the tunnel, and it isn’t even an oncoming train!
One year at our conference, we had someone talking about hair and makeup. Yes, getting your hair cut so that not so much of it is falling out, and having it styled in such a way that it is a wash-and-go (as opposed to blowing, teasing, lots of chemicals, etc), makes a positive difference. We all lose a lot of hair daily, but there is a point in hyperthyroidism that it does become thin and falls out. IT WILL GROWNBACK – so hang in there.

[cathycnm November 16, 2008 at 12:18 am Post count: 284]

#1075362

Jill – I laughingly call this my bad hair year – mine did not fall out but is already very fine and straight. I remember going to get it cut and styled this summer while waiting for RAI. That poor hairdresser – said it was the most stubborn head of hair she had ever worked with. . . finer and straighter than ever. I decided to take the opportunity to grow my hair out natural – something I was going to do at age 60 not 53. I did get highlights a couple times – but stayed away from full color and kept is shorter. It turned out nice enough that I will keep it the way it is. With my TSH bouncing back to normal, my hair seems to be shinier and more willing to hold a curl. There is light at the end of the tunnel.

I just got brave enought to play with make-up to try and hide the bags. I do find it is a little irritating to my eyes – so only wearning it when I have reason. I look in the mirror, however, and the sparkle is coming back into my eyes. I start to look like me again – there is light at the end of the tunnel. Cathy

[silvia3 November 19, 2008 at 3:09 am Post count: 1]

#1075363

Dear Jill,
I decided to write to you, to give you a few words of encouragement. I was diagnosed with Grave’s Disease on July 2003, I started feeling sick right after the birth of my second child February 2001. I was first treated with Tapozole and Propanolol in August of 2003, later on September 11, 2003 I was treated with radioactive Iodine. I started to feel good around November of 2003 up until July of 2004. I then started thinking of having my thyroid removed, just because of the fact that my levels were up and down just like a roller-coaster. I went to the NGDF Convention which was held in my town Chicago on October 2004, I met a lot of wonderful people and received a lot of knowledge information. I went ahead with the surgery on November 2004, by February of 2005 I had gained 20 pounds, I was regretting the surgery. I decided to move on. I had another problem I was very anemic, this was because I would bleed alto during my menstrual cycle. The gynecologist said I needed a procedure called an endometrial ablation (thinning out my uterus) with this procedure I would not be able to have no more children, and if I did it could get implanted in the fallopian tubes. I already had two kids, so I decided to go on with the procedure in December 2005. I started feeling better. In 2006 and 2007 I had to face my parents getting very sick, my father with a lot of complications because of diabetes he was in and out of hospitals and nursing home. My mother sick with non Hodgkin’s lymphoma ( a type of cancer) and I caring for her after her chemo sessions. Sad to say my Dad passed away on September 28th 2008 at the age of 66. I was very heartbroken and did not what my life would be without him but the most wonderful and incredible thing happen to me on October 29, 2007 I found out I was 6 weeks pregnant. I was scared because I was one month away from turning 40, my Grave’s Disease and the endometrial ablation. My Gynecologist sent me to a high risk gynecologist because of my age and health issues. During my pregnancy I felt great and I was glowing, I could not afford to be sad because of my Dad’s passing, I know my dad would have not wanted me to be sad for the baby’s sake. I am so happy to tell you that I went full term and had a beautiful 8 pound baby boy on June 5, 2008. I wanted a girl but God gave us our 3rd boy but this one is my MIRACLE BABY BOY and boy what a healthy baby! This Sunday I turn 41. There is always a light at the end. We have to continue to fight our battles with dignity. Sincerely, Silvia (p.s. My mother just turned 62 and is in remission and very happy with her 9th grandson)

[JoyWV November 19, 2008 at 11:15 am Post count: 4]

#1075364

I am new to this Graves thing too. When will I get my energy back? I am 21 weeks OB and I am getting a break from this PTU for a little while (3 weeks) and I should find out any day if I have to go back on that horrible toxic tasting stuff. Is there another option other than a thyroidectomy or RAI?

[cathycnm November 19, 2008 at 11:31 am Post count: 284]

#1075365

Silvia – What an awsome birth story. Thanks for sharing your silver lining with us!

Joy – You are 21 weeks pregnant now? During pregnancy the anti-thyroid meds are often the safest way to treat thryoid. Surgery carries a risk with anesthesia, as does RAI with radioactivity, during pregnancy. It sounds like you are following closely with your doctor – which you need to continue to do. It is important to monitor thyroid closely with pregnancy, as it can temporarily change due to the metabolic changes of pregnancy. It is very important to your baby for you to keep you thyroid in regulation during pregnancy – so I know the stuff tastes bad but you are over 1/2 way through your pregnancy. Hang in there – you are doing a great job. Other options will be available to you once after your pregnancy. Are you seeing both an OB-gyn and an endo for your thyroid?

[JoyWV November 19, 2008 at 12:01 pm Post count: 4]

#1075366

I haven’t seen an endo yet. I will probably be referred to one once I deliver. Right now I just see a maternal fetal medicine specialist (high risk doctor) and my OB. My levels are still undetectable, I guess that would be the TSH or T3 or 4. Not sure. But I tested positive for Graves on all of the diagnostic tests that they do. I get my blood drawn about every 3 weeks, I feel like a pin cushion. Before I found out I was pregnant (I had a tubal reversal surgery 03/11/2008), so this all happend fairly quickly. The only symptoms I had were extreme fatigue (which is normal with pregnancy), I would feel steam rolled just by going to the grocery store and I would have palpitations (which I thought were just panic attacks), and hot flashes. On a hunch I thought I had something else going on and at my first appointment with my new OB, I told them the problems I was having and they took all the necessary steps to find out what else was going on besides early pregnancy. Sure enough, they called me and told me that my levels were undetectable and that I needed to start that PTU ASAP. It put me in fear mode because no one that I know of in my family has it, and the only thyroid problems in my family were hypothyroidism, the opposite of what I was diagnosed with. My question is, why wasn’t I losing weight before I got pregnant? I was doing Weight Watchers and walking 3-4 miles a day at one point and still not losing. Then, I got to the point where all I wanted to do was eat and sleep, which I thought was depression, then finding out I was pregnant on top of it.

[cathycnm November 19, 2008 at 12:19 pm Post count: 284]

#1075367

Joy – You ask a lot of good questions that I hope you will share with your doctors – it sounds like you are in good hands. Most MFM guys I have worked with are good at answering questions, etc. It sounds like the nondetectable levels are probably TSH. Remember that pregnancy does change the metabolism so can be the trigger for thyroid problems. It is hard to know if this was going on before you were pregnant. And, yes, thyroid and pregnancy symptoms are similar for some folks – making it hard to know which is impacting what.

As far as the genetics of it – hypo and hyperthyroid can both have autoimmune components, so it is not uncommon to see a mix of hyper and hypo in a family. My mom and I are Graves – my sister is hypo. As far as being tired and wanting to eat and sleep – sometimes that happens. I had a similar experience and could not believe it when they found me hyper – cause I felt more hypo but had a mix of symptoms. I think with pregnancy, you are also having so many signals to the body. Graves wears you out by speeding up metabolism and pregnancy further stretches energy stores. Your body may have "known" it needed the extra food and sleep to keep the pregnancy healthy – giving you almost exagerated symptoms of pregnancy.

[JoyWV November 19, 2008 at 1:59 pm Post count: 4]

#1075368

Thank you for listening to me! I see with your name, you must be a midwive, right? I had a midwive for my second pregnancy and LOVED IT. She left the area and then I hooked up with a great doctor, who just recently left the area too. So I was in quite a pickle after the tubal reversal and all of these symptoms. I thought people would look at me like I am cookoo or something. Thanks again! ” title=”Very Happy” />

[kallikat November 19, 2008 at 3:08 pm Post count: 29]

#1075369

It is so interesting to me after reading all the posts, that most of us went through some life changes before being diagnosed. Did the stress bring on the symptoms – or was stress one of the symptoms? (chicken or egg?)
Jill – you said you moved, changed jobs, got married and bought a house in the year before you were diagnosed. All the same for me, plus: one son graduated college, the other joined the army, then the college grad got married early this year. I found out last week I’m going to be a grandmother next June! Talk about life changes!!!
What a roller coaster!

[cathycnm November 19, 2008 at 3:33 pm Post count: 284]

#1075370

Joy – Yes, I am a nurse-midwife – now teaching nursing students and directing a rural program – and in process with a post masters in another specialty. I cannot imagine night shift and on-call hours with thyroid issues!!! But, guess that is why we have a nursing shortage with our average age late 40’s – early 50’s the work becomes too rigorous!

I am glad you found a doctor – it is hard to find a match! It is cool you had a CNM for one of your pregnancies – where are you located? Thyroid issues in pregnancy are so common – yet can be so difficulty to deal with. I hope you will stay in-touch and let us know how you are doing – we can all celebrate the birth! When I was practicing, I just loved it (until I burned out, which brings me to the next topic).

Killikat – True on stress. I had hyperthyroid symptoms about 2 years before I was diagnosed after a stressful move – but my thyroid tested normal. So, when the (almost identical) symptoms recurred last fall (yes, very stressful work), I though it was more of the same – just too much anxiety/burn-out. I have often wondered if there was a "personality" more prone to Graves – and I say this to offend no one but when I examine my life, I tend to throw my passion into work and loose the balance – then burnout. What is Graves other than our metabolism "burning out"? My sister – who is hypo – is disabled and works only a few hours a week – much more type B her whole life. Mom was more like me and was over-responsible. Your question about chickens and eggs has been rolling through my head for weeks and I am hoping I can do some research on this in my post masters journey!

[Ski November 19, 2008 at 4:37 pm Post count: 1569]

#1075371

We have often commented that it appears we are all "Type A," one of the most common complaints is that we feel as if we’ve let everyone down because we used to "do everything." At the conference I wondered out loud whether it’s so true of all of us, or maybe just all of us who get to the conference are more like that, but I was speaking without having been on the Bulletin Board for months, so I forgot how prevalent the comment is here as well. I think there is DEFINITELY something in the connection.

And as far as stress ~ of course this is not something anyone can prove, at least not right now, but the doctors at our most recent conference said that they HAVE identified one particular "defect" that all of us with autoimmune diseases have. Now, there are people with the defect and no autoimmune disease, but everyone with an autoimmune disease has the defect. They also said that certain vulnerability in the body may suggest where the autoimmune disease will manifest, so people with chronic joint problems may end up with rheumatoid arthritis, people with chronic sinus infections may end up with Thyroid Eye Disease (not sure how our thyroid becomes vulnerable ~ I lived near Three-Mile Island at the time of the accident, so that’s my theory about myself). This would suggest that we have some kind of predisposition, and then a vulnerability in our body, and it seems that the final piece of the puzzle is some kind of stressor that "flicks the switch" ~ everyone I have spoken to about Graves’ tells me they can point to a specific stress event (or many) that preceded their symptoms appearing, so I think it’s a set of three things that play into our eventual disease.

[cathycnm November 19, 2008 at 6:28 pm Post count: 284]

#1075372

Interesting, Ski. Thanks for sharing. I also teach positive psychology for nursing and am fascinated by the research on optimism and health outcomes. Such as, a Harvard study (as I recall) found that men were more than 2X as likely to survive a second heart attack if they were optimistic. I often wonder what optimism does to the immune system. And reading the posts about illness after Graves – when our ability to be optimistic is thrown off by illness, are we more likely to become ill? I am a huge optimist but have really had to work at that with hyper/hypo thyroid. Interesting to ponder. Cathy

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