[nicolefsu]

#1058788

Hi all!

I am new to this site, and have been sitting here reading for hours now. I cannot believe I did not find this earlier! It feels so refreshing and wonderful to see people are going through the same things I am. I feel like no one around me understands in the least bit what I am going through. I am 23 years old. I was diagnosed with Hyperthyroidism August 2010, when I did a health screening for a new job. It caught me off-guard but certainly described a lot of the things about me that I had considered "normal" for quite sometime. At first I was not sure what to expect, I went to my first endo and he was awful! He dealt more with diabetes patients and rarely spoke with me about what I was going through. He immediately put me on Tapazole and started me on 3 10mg pills a day…this went on for almost a year. I had terrible side effects to the Tapazole: I was itching uncontrollably (I was then given Allegra which helped so much), I gained almost 12 pounds (I was only 110 when I was diagnosed), I also had terrible muscle spasms (I would basically get "charlie-horses" in different muscles in my body all day long) I told my endo about this because it was extremely painful and I would pull a muscle only reaching for a stapler, he told me it wasn’t from the Tapazole and to drink tonic water (which did not help in the least bit)……I was convinced he was wrong, I have not gotten any of these "spasms’ since being off the Tapazole. Eventually in July 2011 he said I was in remission, I felt better, I could sleep better, and I was becoming more social and even started to love to dance (which I was too painfully shy to do before)! About a month later I was having stomach pains, I eventually couldn’t eat because when I did my stomach would cramp up. I wasn’t sure what was wrong so I went to my PCP and she did blood tests and said my thyroid was not normal (she wasn’t aware of what I had previously gone through). I immediately said I want a different endo because he was not working for me, he never said more than 5 words to me. I am now currently seeing a great endo who works in a practice dedicated solely to thyroid problems. I am not doing well though, I feel like my symptoms have worsened and come back worse than they were a year ago. Is that normal? I feel like I am getting symptoms that I’ve never had before. My endo now told me that I have Graves Disease which my previous endo had never even mentioned to me. I have been put on 1 5mg pill of Methmizole a day and am currently taking beta blockers. My anxiety is getting worse, I am not sure if it due to the stress levels of my job (I work in a jail) or it is my thyroid controlling everything. Everyday I am nauseous, and am struggling with a gastrointestinal problem of some sort that has not been diagnosed yet. They did an abdominal ultrasound on me and found nothing. I have no idea where to go at this point. My endo said it’s just my thyroid making me nauseous and the Methmizole has not been helping that what-so-ever. I am almost to the point of checking myself into the ER just to get some answers. This is starting to effect my personal life, I don’t want to go out with friends anymore because I am scared I will get "sick" and not feel well. I don’t even want to consider dating because I can’t even begin to explain to a guy what I am/have been going through. I also feel this is starting to creep into my work life as well. I struggle to get through my 12 hour shifts that start at 6am (I feel worse in the morning), and I haven’t called in sick yet but I have been pegged as the "always not feeling well" girl. No one understands what I am really going through, and I am about to lose my mind. I see my endo in 2 weeks, and I want to suggest surgery to her because I feel something needs to be done and that is my best option. My parents are starting to think all these feelings are made up in my head and that I make them worse. Am I losing my mind? Am I making myself sick? Who should I see first about my gastro issues? Could they have something to do with my thyroid or are they completely unrelated? Has this happened to anyone else?

Thanks in advance. I didn’t want to write too much…but it looks like I went there.

[Bobbi]

#1169986

Hi, Nicolefsu, and welcome to the board.

It is good that you have an endo you feel comfortable with now. We need to establish a working relationship over the long haul, so having a doctor you can talk to is important.

Your current dose of methimazole (which is the generic name for Tapazole) is significantly smaller than the dose you were on before. It is possible that the higher dose was a problem for you. What is important, though, is that the dose you are on has brought your thyroid hormone levels into the normal zone. If it hasn’t, you might need a dose adjustment. Stomach issues (although not, usually nausea) can result from too much thyroid hormone revving up the digestive system. Your doctor will undoubtedly ask you to come in periodically to check your blood levels of thyroid hormone to make sure that you are inside normal.

Our emotions do go wonky with excess thyroid hormone. It is important that you know that because we must distrust our knee jerk responses to things until we get well again. It is easy to damage relationships by flying off the handle, for example. And excess levels of thyroid hormone can make us anxious and nervous. That said, you are ill, and having anyone tell you that you are exaggerating, etc., is not only not helpful, but it’s likely not to be true. We have to spend months AT normal levels of thyroid hormone for our bodies to heal properly. Just taking the pill doesn’t bring instant health. It has to be the correct dose, OVER TIME. And the way to tell its the correct dose is to have periodic blood tests making sure that you are still within the normal levels for thyroid.

So, try to be patient with yourself, and work with your doctor to make sure you are on the right dose of antithyroid drug. And take good care of yourself on your off-work hours.

[Kimberly]

#1169987

Hello – Just wanted to add that our office is happy to talk to family members. We can be reached at info@ngdf.org or at 877-643-3123. Sometimes it helps to hear from a third party that this *is* a serious condition.

Wishing you all the best!

[Debbiedew]

#1169988

Hello….I’m afraid I feel the same way you do but I’ve been doing this for 7 years now. I have many questions that are still unanswered. I had the RAI 6 years ago and I still go through my "episodes" about twice a year and they last about 3 weeks. For some reason my levels never stay where they belong. I bounce between 150 mcg and 175 mcg of Synthroid. I am currently in one of my "episodes" now. Last night I woke up at 2am and was having some sort of attack. I don’t know if it’s panic or anxiety. What I know is I can’t sleep, I’m always feeling off and nauseous and bonus, my chronic abdominal pain, that started when I was diagnosed, is still flaring up. last night I just wanted to jump out of my skin. I’ve had all the test and of course everything is normal. I’m sorry I sound like I’m at the end of my rope but I really am.

This stomach tihng is really messing with my life now. Does anyone have these issues? I’m always feeling like I can’t get tall enough. It’s like I need more room in my upper body . The problem area seems to be right under my xiphoid process. I just don’t know what it is. It’s like a stomach cramp except my stomach doesn’t hurt, if you know what i mean.

Please help. the Endo can’t understand why I’m having all these issues. My numbers say I’m running a little fast but should all this be happening???

thanks.

[Kimberly]

#1169989

Hello – Hopefully, you will get some other responses from others who have experienced this, but in the meantime, can your general practitioner get you a referral to a specialist such as a gastroenterologist? Obviously, this issue is affecting your quality of life, and you deserve to get some relief!

[nicolefsu]

#1169990

Debbiedew I can certainly relate, though I have no been going through this as long. I can’t even imagine what you are dealing with. I have not done RAI or surgery yet…my endo thinks I’m too young to do surgery right away (even though I’m 23), and I don’t think RAI is even an option because of my enlarged thyroid.

But if you are having trouble with nausea and abdominal pain I would strongly recommend acupuncture! I was out of options, and I was very desperate because my doctor has put me on PTU recently and taken me off the methimazole, so it is one big waiting game..and I’m not getting any better in that area. So I decided to try acupuncture, I’ve only gone twice so far but it is making a difference! My acupuncturist says it will take about 7 or 8 sessions to feel much better. I’m definitely open to trying anything because this is no fun!

I wish I could help you more, but I’m still new to this disease. Get well soon! ” title=”Smile” />

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