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I don’t know where else to turn other than here and I think you all understand. First here is a quick background of me and then I will explain where I am in all this…looking for any advice or direction I can get. I am the mother of 4 boys (my oldest is biologically my husbands and adopted in my heart and on paper since he was a baby by me). So I have had 3 pregnancy with my middle pregnancy ending in a placenta abruption that was life threatening to both the baby and me but we both pulled through it. My last baby was born March of 2010…this is when my body started to fail me. (Hope this isn’t too much information) I had a period for 6 months after my last baby was born and nobody knew why. Then in October 2010 stopped having periods all together. I have had 2 maybe what you consider periods since then. This is what started the red flag of there is something is wrong with my body. So after repeated attempts to get my obgyn to figure out what was wrong I got a second opinion and that didn’t get me anywhere…so in January 2012 I went for the third opinion and she did bloodwork and found that my TSH was completely suppressed. Now in January I felt crazy…like seriously crazy. I was depressed but was in “marathon mode” is what I call it. I always felt like my heart my racing and I was out of breath and easily agitated. My heartrate was at 150-ish I later discovered so it was beating fast. Oh and I would go days without sleeping. I was exhausted but coud NOT fall asleep. After this obgyn called me and sent me to an endocrin. he thought I had thyroiditis b/c my thyroid was sore to touch. I was only home from his office 2 hours before he called to tell me I not only had thyroiditis but I also have Graves diseae. This was devastating to me. I can’t take the betablockers b/c though my heart rate was high my blood pressure normally runs low so betablockers weren’t option. So he stared me on Tapazol. I took it 4 days before I ended up admitted on stroke alert. Every time I took the pill I lost feeling in my right arm to the point I could look at it but not move it. I was in the hospitl for a week. Refused to take the pill for 2 days-finaly surrendered to the doctors and within a half hour of taking it I started to lose feeling in my arm again. So I refused to continue taking the Tapazol but none of the drs believed it was the medicin because only one little girl has ever had that kind of side effect. So he put me on PTU. So now I am on PTU 3 times a day that can cause my liver to fail at any time or a whole list of other side effects. So I have been on PTU for 6 weeks now my TSH isn’t suppressed anymore but still not in normal ranges..teh endo says it is recovering. So in the last week I can feel my levels doing something. I am freezing cold, gaining weight by the day, and so exhausted I can barely function. I assume my levels are too far the other way now and I am hypo. There is no cure for this disease right? So we all just manage the decisions and side-effects? Is this my only choice? If I take the PTU I could go into liver failure. If I do the RAI or the surgery..I don’t even know risks of that but I do know then I will be hypo and I hate how I feel hypo. Do you all feel normal? Do you have good days and bad days like I do? I feel like Graves is consuming my life and I am not willing to let that happen but I am too exhauted to fight it at this point. Do I have a chance at remission with PTU? My endo wants to put me back on the Tapazol and I just refuse. I just want to be a mom again and focus on my kids not my thyroid. Also is there some diet for Graves that I don’t seem to know about?
Danielle
*found out I have Graves January 24th, 2012*
Hello and welcome to our forum!
First, keep in mind that anti-thyroid drugs such as PTU require periodic monitoring and dosage adjustments. If you are feeling symptoms of hypO, it’s important to call you doctor’s office ASAP to get a new set of labs done.
You are correct that there is no cure for the autoimmune portion of the disease; all we can do is treat the effects of hyperthyroidism or hypothyroidism. Following RAI or surgery, you won’t be left hypo; instead you will be treated with thyroid hormone replacement. However, patients should be aware that dialing into the right dose of replacement hormone is a process, not a quick fix.
It takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once you do go hypo after RAI, your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again. It’s the same process after surgery, except that you will start on your initial dose of thyroid replacement hormone right away.
All three options do have risks and benefits. The worst of the side effects with anti-thyroid drugs like PTU (liver and WBC issues) are rare, but this is still something to be aware of.
For the most part, Graves’ is not a condition that can be impacted by diet, although patients who are hypERthyroid are advised to avoid foods that have tons of iodine, like the seaweed wrap that comes with sushi. Many patients also choose to minimize processed foods with unpronounceable ingredients and instead focus on eating whole, unprocessed foods: fruits, veggies, lean proteins, and whole grains.
Take care — and please keep us posted!
Hi! I have 4 boys too
I have good days and bad days as well which are pretty much dependent on how much sleep I get. The night before last was a good sleep, so yesterday was a good day. Last night I slept very little, so today’s not so good. I was diagnosed 3 weeks ago and have been on Methimazole (Tapazole) 5 mg. daily for the three weeks. I think it’s helping, but I know it will take time to get back to who I was before all of this. It is frustrating. The insomnia is the worst, no doubt there for me. The meds. seemed to have improved most of my other symptoms, but not the insomnia so much. Although, I do have some good nights, so that is a plus I guess. I hear you though on not wanting Graves to control your life. I’m trying to stay positive; I want to be “me” again. Hoping for that someday soon.Alexis
Welcome and I can certainly empathize with you.
I was diagnosed in Sept of 2011.
I hear it gets better. I hope it does.
Hi Danielle. I’m 30 and also just found out that I probably have Graves (waiting for a second opinion from a doctor who communicates a little better than the first). Just wanted you to know you’re not the only one. I don’t have kids, but I have a dog. : )
I’ve had a lot of bad experiences with psychiatric meds up until this point, because apparently most of my panic/depression is caused by Graves. I really understand about working hard to communicate with doctors when you can tell your body is reacting adversely. Keep at it! Be an advocate for yourself. The doctors are so busy themselves that when things don’t go according to plan, a lot of them kind of brush on by.
I strive for normal (which I have for a long time because of my emotional stuff), and I think that’s the best thing in the world to hope for. Trying to feel good all the time is a losing battle – nobody does. But feeling normal at least part of the day, every day, is good enough for me. If it’s the whole day, awesome. If it’s five minutes with my man and my dog right after dinner, I’ll take it.
Finding this forum has helped a lot. I’ve been able to communicate with people who are going through similar things, instead of waiting between appointments to try to talk to my doctor about my feelings (not really his specialty!). Hope talking to people here and in real life helps. Hope you feel better soon. At least now you know what you’re up against, instead of trying to randomly feel better without knowing the root of the problem!
Hi,
Im new to the forum. I am 37 and recently switched endocrinologist. In ’09 I went to my general phys. “feeling crazy” along with irritable major depression and stomach irritabile all the time. She sent me for colonoscopy, prescribed antidepressents and referred me to GYN.When I came back and still felt miserable she did a thyroid test. I got a call to go on synthroid for the rest of my life.
I then asked to see an endo. 1st one dismissed me 2nd was very agressive with test( uptakes, U/S, etc) 3 months later prescribed PTU. over the 3 years He had me on 15 pills. The last straw was Hydrocortisone for 4 1/2 months. Talk about roid rage. Whoa, along with the other side effects. I left in Dec.’12, I was on 15 pills a day and not getting better.
My last ultrasound found 2 nodules. My new (3rd) endo. sent me for biopsy and switched all meds. Im on methimazole 5mg, from 20mg in January. One nodule benign, other is suspicious, The slides were sent to John Hopkins and they said the same. So now I am going to another endo/surgeon, requested by my current endo. for another biopsy. Then the question is to remove or RAI???
I feel like a ginuea pig. I question everything now? I just want to get better. I hate feeling so tired and depressed.
nailpro911 wrote:My last ultrasound found 2 nodules. My new (3rd) endo. sent me for biopsy and switched all meds. Im on methimazole 5mg, from 20mg in January. One nodule benign, other is suspicious, The slides were sent to John Hopkins and they said the same. So now I am going to another endo/surgeon, requested by my current endo. for another biopsy. Then the question is to remove or RAI???Hello and welcome – We’re fellow patients here, so we can’t tell you what the best option is. However, at our 2011 conferences, one of the doctors mentioned that patients with suspicious thyroid nodules should get a definitive diagnosis prior to pursuing RAI and that surgery is the recommended treatment option if a nodule is definitely cancerous.
For patients with overactive nodules that are *not* cancerous, RAI is one of the treatment options.
Hopefully, this latest surgeon will be able to give you some better direction. Please keep us posted on how you are doing!
I’m 28 and was diagnosed with graves in this past November. I’ve tried to keep strong through the diagnoses and the tests to know that once it is fixed that my life will be somewhat better.
My first concern was my hair falling out so badly. I went to my family doctor and described the symptoms I was having. (Hair falling out, rapid heart rate, anger issues, my anxiety had gotten worse, extreme fatigue, messed up my blood sugars cuz I’m a type 1 diabetic, and my periods had stopped)So I’m dealing with two autoimmune problems.
My endocrinologist had me do an RAI treatment and check my levels in a month. By the time the end of January 2012 6 weeks after the treatment my TSH levels were clear on the other end of the spectrum. So I had a quick response. Now that I have been on medication for the last 4 months I’ve noticed a few things…my periods have tried to get back to their regular flow, my heart rate has still been high off and on, my hair has still been falling out but not as bad, my blood sugars have started to normalize again, my fatigue still isn’t good but its better.
My only major concern at this point is my heart rate still being weird. Should I take my beta blockers again only on the days I’m have the heart problems? Or should I go get an ekg and see if its something else? My hair is still falling out ….I guess that takes time to normalize.
Hi DarcRaven – We’re all just fellow patients here, so we can’t tell you if it’s appropriate to re-start your beta blockers or how to handle the dosing.
I would definitely contact your doctor’s office and mention your concerns about your heart. The more specific you can be, the better — for example, giving them your pulse rate while at rest, documenting frequency/severity of any episodes of heart palpitations, etc..
Take care!
Sounds like you and your team of medical experts are still in the “let’s figure out which combination of treatments is going to work best on this patient” phase . Many of us go through this phase. Sorry you are experiencing so much discomfort. Biochemically, it’s not likely that you are finding much peace of mind right now.
Hold onto this thought: It gets better. Although it might take a while to find the right treatments, the doctors have effective treatments that will improve your life. Right now, your thyroid is producing hormones that affect your emotions and thought. It’s okay to rely on others to help you. Treat yourself very gently. Try not to “believe” your own fears. It gets better. It gets better. It gets better.
Blessings,
Rapunzel -
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