Discussions By Condition: Medical Errors

asthma and hypothroid

Posted In: Medical Errors 6 Replies
  • Posted By: Anonymous
  • November 14, 2006
  • 02:40 AM

I'll start off with my asthma. The first time I really remember not being able to breathe was when I was about 15 or so. My mom took me to the doctor and he said, here this is what you need, and he gave me allergy meds. Well they didn't help at all. I felt worse, and plus they were the kind you squirt up your nose which made my nose feel 10 times its nomal size. So anyways told the doctor about that and he said I should stay on it. I didn't and since it was only allergies and only were bad during summertime, I thought I could deal with it and take over the counter meds. Fast forward 3 1/2 yrs later. Had just laid down on my couch and I couldn't breath, scared the crap out of me, so went to the store cause I heard they sell otc inhalers. Got one, and it helped, for awhile. Few months later, was outside in the heat, skateboarding, got to hot and couldn't breath, so I passed out. A couple months after that, I woke up got out of bed and couldn't breath. I was calling the dr to get an appointment, they rushed me in. So they finally got me meds for athsma, and allergies. Flovent, albueteral, singular, and allegra d. Dropped the flovent and I am now a lot better with that.
Now the thyroid. I was an overweight 9yr old. I swear i was at least 40 lbs. over. Had a funny looking neck, and was always sleeping. My mom had the drs test me, came back abnormal level, don't know what it was, but they said that I am ok. I should grow out of it. So then a couple yrs later I had went to the doctor for something, and my mom asked for a thyroid test again because my period wasn't regular.I got the test done, came back abnormal, but it's ok I will grow out of it. They wanted to put me birth control, for the periods. Didn't do it. So a yr or so later I was still heavy and tired, neck looked horrible, painful painful period. Not fun. Went to the dr. My mom had to ask again for a thyroid test, levels were abnormal, but said I would grow out of it. But finally a year later, I lose all extra weight and my neck went down, but thats it. Periods are even worse then before, and I sleep even more. But remember I grew out of it, right? The exact year I went on my athsma and allergy pills, I started gaining weight again, but very very slowly. I slept about the same and the periods got a little bit better. Then I get married at 19, still gaining weight, am on birth control now, so the periods are what they should be at, I guess. Get a new dr for the asthma and allergies. Tells me on a visit for just the asthma, my thyroid hangs lower then normal. No it didn't bother me, I felt just fine. My new dr wants me to come in for the yearly, I held off on that until this year, I'm 22 now. I start talking to her before the exam and start bawling, she thinks I have depression, ok no problem, I can deal with meds for it. I tell her that I have gained around 30 lbs since i got married, and I can't move much, I sleep, all the time. I started taking naps, for me thats bad enough, but then it got to the point where this was my typical day: I get up for work at 6 am, go to work, come home for lunch, fall asleep for an hour, go back to work, get off at 4pm, fall asleep right when I get home even in the middle of working on the computer, wake up at 8 or so, go to the bedroom, fall back asleep, wake back up at 11 pm then get ready for bed, then go to bed and do it all over again the next day.Also i tell her that I get so weak that I can't barely lift a thing and my periods are now so bad that I am lucky if I get them every six months. So I said, maybe I am just over worked and stressed out and thats why I am sleeping all the time. And as for the weight gain, maybe somehow my it's my allergy and asthma meds making me gain it. She told me thats not possible, just a coincidence. Then she feels my neck ands says your thyroid is extemely big. So she wants to test my tsh levels. No problem, had done it so many times. I thought she won't find anything. Calls me a few days later, and tells me I have Graves desease. Confused the heck out of me, cause I have read plenty and ,my sister in law has hypo, from have her thyroid taken out due to cancer. So ok, now I have to go in for more tests cause, I don't remember why. I also was told that I may have something on my pituitary gland that increased the prolactine levels, then I need to do an mri, on the next day. Well she calls back later that day and told me that she was wrong on the graves desease, it's actully hypo, not hyper. Now that made sense. I get put on 75mcg. The generic.I still have to go to my mri, have 2 lumps on the pituitary gland. Thought at first it was tumors, but it wasn't, yea. It was nodules, for it being over worked from the thyroid, not working. Go to a specialist, he tells me I shouldn't be functioning at my level, which was at 80. So highers my dose, and I basically ask if this and that hurts or feels funny because of my thyroid. Yep everythings because of it. Told me it's Hashimoto's thyroiditis (most common) and my thyroid is dead, so I get to be on pills for the rest of my life!! So he gave me some samples of 112mcg synthroid. Start taking it, and I start feeling even worse then before!!! I gained 10 lbs lost a lot more hair and couldn't sleep at all at night, still took naps. I told myself that it was just the change of dosage and my body had to get use to it. Tuffed it out for 1 and 1/2 months, and couldn't bare it, went and got my generic brand, have only taken it now for a week and a half, but feel a lot better!!! Still could be better though. Currently waiting on the test results from the blood tests from last week. Also at this point I have to take tylenol pm to sleep, cause I am in so much pain. Every time my husband would move I would ache so bad. I can't sleep because of it. I also have been having really weird dizziness most of the day, also lightheadedness. I have noticed at about the same time everyday now, I get even more dizzy then usual and right after the dizzy spell, which last a good 10 mintues or so, I have horrible pain all over, but what really hurts most is my neck, back, and shoulders. I don't know if that is releated to my thyroid or something else. Also one last thing, I found out that my grandma had thyroid problems and my mom told the doctors back at my first test. Why do some doctors not want to diagnose and some are too ready to? I don't understand. I can't help but wonder if I sarted taking pills when the first symptoms appeared, if I had gotten the help when I needed it then, would I still have a dead thyroid, or would I have actually "grown out of it"? I guess I'll never know. I just want to let all of you know my story and that even if you go to the doctor and they tell you or your children that your levels are abnormal, but you, or you child, will "grow out of it", please go right to a specialist. Waiting may cause more damage then necessary. You don't always just "grow out of it". You could possibly level out for a time, like me, but it will eventually catch up with you. Hope this helps, or interests all who read. I also would love to know of anyone else who has Hashimoto's.

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6 Replies:

  • I am 50 years old. In 1994 i was diagnosed with Hypothyroid, and today, my regular dose is 250mcg a day. Although i work at keeping my weight down, i am still quite large. Im sick of it. I read your story with interest.I hope you continue to improve. Good luck.
    Anonymous 42789 Replies
    • November 14, 2006
    • 10:02 AM
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  • Hi. I just posted this in another area of the forums for someone with similar problems, but I thought I would bring it over here for you as well. I was diagnosed with Hashimoto's about four years ago, and without a doubt those first few months are the worst. Hashimoto's is an autoimmune disease where your own immune system attacks and eventually kills your thyroid. Yes, you will need to be on thyroid medication for the rest of your life, but it's worth it. Just stick with it, take your thyroid meds at the same time every day, without food, drink (other than water), other medications, or vitamins three hours before or one hour after, every single day. Do not skip doses. Do not change the time of the day you take your meds. Consistency is key. Some people do have a bad reaction to the "filler" material in Synthroid, so if you do better on a generic, definitely stick with that. You should be able to get your doctor to write a prescription for the specific generic that you felt best on. Every time you refill your prescription, double check that the pharmacy hasn't changed the type on you. All that said, you can't expect the thyroid medication to be a miracle pill. Thyroid hormone is needed in every cell in your body, and for years before your diagnosis, every cell in your body was being denied the thyroid hormone it needs. It will take awhile for your body to heal from that. It usually takes between six months and three years of treatment to get the symptoms under control. The effects of the thyroid pill you take today can't even be measured by lab tests for another six weeks. According to the American Association of Clinical Endocrinologists (AACE http://www.aace.com), optimal TSH levels are between 0.3 and 3.0, so that is the range you should be shooting for, eventually. Especially during this first year, you need to keep in touch with your doctor and get your thyroid numbers retested every 6 to 8 weeks, and make sure your doctor adjusts your dosage in response to your lab results. Once your TSH is stable and between 0.3 and 3.0, you'll still need to have your TSH retested at least once a year. Even if the doctors think your thyroid is dead, strange things can still happen. My grandmother has had Hashimoto's for over 50 years, and has repeatedly been told that her thyroid is dead, only to have it come back and make one last valiant stab at life. And with your sister having had thyroid cancer, that is something to be on the look out for, too. Also, Hashimoto's can go into remission, which could require a lowering of your dose, and it can worsen, which could require an additional increase in your dosage. It's important that you keep tabs on your TSH for the rest of your life, even if your levels have been optimal and stable for a long time. It's hard to say what would have happened if you had been treated for Hashimoto's way back when. There have been studies that suggest that early and aggressive treatment of Hashimoto's can slow the course of the disease, but there is no cure for Hashimoto's. It's an autoimmune disease, and autoimmune diseases can go into remission, relapse, and flare for no apparent reason. If you had been treated for Hashimoto's when you should have been originally, you almost certainly wouldn't feel as horrible as you do now. But you would still have Hashimoto's, nothing could have changed that. While you're waiting for the meds to kick in and make a difference, read everything you can here: http://thyroid.about.com/ That is one of the most comprehensive and trusted webpages on thyroid issues around, and the message boards there are a great place to get support. Also, I would strongly recommend that you take a look at the medications you are on currently, besides the thyroid meds. Birth control is helpful to a lot of people who are hypothyroid, and it will help get your periods regular and less painful (which is also a symptom of hypothyroid). But if you are on a birth control pill, take it separately from your thyroid pill, as the hormones in the birth control can bond with the thyroid hormones and make them less useful to your thyroid-starved body. (This is why I personally prefer the Ortho Evra birth control patch.) Also, if you are on birth control or go on birth control, be sure that you get your thyroid tests done during the three weeks that your birth control is active, rather than the one week each month that you have your period. If you are still on the antidepressants, you might want to talk to your doctor about going off of those. Many people with undiagnosed Hashimoto's have antidepressants shoved down their throats by doctors, when what they really need is thyroid medication. Now that you have the thyroid meds, you might not need the antidepressants -- and they may be masking important thyroid symptoms. It does sound like you are on the right track now. Just be sure to stick with the thyroid meds and keep consistent. The first few months are the worst, but eventually you will start to feel better. ~Ryot
    Anonymous 42789 Replies
    • November 14, 2006
    • 09:15 PM
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  • the other unregistered and Ryot-THANKS for shaing your comments, I greatly apprectiate it. I know a lot of people have thyroid problems and there is more that don't know about it. I am glad to finally have someone who knows what it is really about, and feels my "pain" besides the doctors. I got my test results today and now they tell me I am at .1 and I need to lower the dosage, so take my 112mcg, 6 days a week, then half of one on the 7th. I don't understand how that will make a difference? I did tell the nurse who called, that I am still experiencing these symptoms, and then some. Also how I felt on the Synthroid, now I get to wait and see if I need to go back in. But anyways thanks again for the comments, it was a real joy to see such helpful info.Also, Ryot, thanks for answering my other post, tgeldreich. I just wanted to find out and thought to put more then one post down, I am glad you are trying to help. It is GREATLY appreciate!
    Anonymous 42789 Replies
    • November 14, 2006
    • 10:56 PM
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  • I almost forgot one thing. I didn't know about taking my other meds at a differnt time would help! I just take allegra d celexa besides the thyroid pill. Would it be bad if I take them before my thyroid pill? let me know thanks.
    Anonymous 42789 Replies
    • November 14, 2006
    • 11:00 PM
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  • I need to lower the dosage, so take my 112mcg, 6 days a week, then half of one on the 7th. I don't understand how that will make a difference? It sounds like they want to lower your dosage a hair, but not all the way down to the next size thyroid pills come in (which I'm pretty sure is 100mcg). Keep in mind that they are doing this because your TSH is 0.1 (I think that's what you meant?), which is below the optimal 0.3-3.0 range for TSH -- they aren't doing this because of your symptoms. It's a really frustrating thing, and for the first year I felt like I was living in 6 week chunks, but remind yourself of this at least once a day: the thyroid pill you take today won't be measurable in your bloodstream until 6 weeks from now, and won't make a noticeable difference in your health until 3 months from now. Taking your thyroid pill consistently today will mean a week of not feeling gross 3 months from now. The thing that helped the most for me was automating when and how I take my thyroid medication. Because you shouldn't eat, drink, or consume anything else three hours before you take your thyroid med, I've always taken my thyroid med first thing in the morning. When I was first diagnosed I also had hypoglycemia, so I couldn't wait the hour after taking the thyroid med to eat (or have coffee!). So what I started doing was that I set a separate alarm clock for about an hour before I would need to get up. Every night while I'm brushing my teeth I set out a glass of water and my thyroid pill next to this separate alarm. I'm a pretty heavy sleeper (and I'm on additional medication right now that makes me even more so), so I put the whole thing on the far side of the room, forcing me to actually get out of bed to turn off the alarm. So every morning, my thyroid alarm goes off, I stumble out of bed, turn off the alarm, take a thyroid pill, put my pill bottle upside down (so that I'll know later that I did actually take the med -- the vast majority of the time I don't even remember getting out of bed), and then climb back into bed and go right back to sleep. Like I said, most days I don't even remember getting up (it does help that my husband will push me bodily out of the bed if I don't turn off the alarm fast enough). In the four years and two months since I started on thyroid medication, I've never once missed a day, and rarely have had to take my medication late. As far as taking other medications with or before your thyroid meds, I tend to err on the side of caution (I'm on four other prescriptions besides the thyroid med myself). Since a change you make today won't show up on your labs for 6 weeks and won't affect your health for 3 months or so, being consistent is really important. You can take your thyroid pill with your coffee every morning if you want to, but since calcium will bond with the thyroid hormone, you would need to have your coffee at the same time, with the same amount of milk, every single day (including weekends!) -- this is all so that when the pill you take today gets measured in 6+ weeks, the doctor will be able to make an informed decision about how to adjust your medication. That's why consistency is so key! So for me, the easiest way to make sure everything is consistent every day is to take my thyroid med when I know I will be sleeping the three hours before and the one hour after I take it. But play around with it a bit now and see what works best for you. Oh, and one last thing: in my experience, the nurses who call you with your test results rarely have any specific answers about what's going on with you. They're basically given a Post-It with your name, number, and test results and told to call you along with 50 other patients. Especially with a life-long disease like Hashimoto's, the nurses can make your life heaven or ***l, so always be nice to them, but I generally think that any questions beyond the numbers printed on the lab report should go straight to the doctor. Ask the nurse if she can schedule you a follow up appointment with the doctor, and if she can't, just call the doctor's office back as soon as you ring off with the nurse (they may have different nurses handling test results and scheduling). You've just been diagnosed with a life-long disease that is no where near under control, so you should *always* feel comfortable scheduling a follow up with your doctor, no matter how long it's been since you last saw him/her, or anything else. You'll get the best treatment if you go straight to your doctor with your questions. Let me know if I can do anything else to help. :) ~Ryot
    Anonymous 42789 Replies
    • November 14, 2006
    • 11:58 PM
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  • I also have Hashimoto's and had to fight for a diagnosis after several years of being told I was "just depressed." I cannot stress enough to people that a "normal" TSH test result should not be used as the final diagnosis. Please have your doctor check for antibodies and your other thyroid hormone levels. But here is where the story gets interesting. After moving to a new city my thyroid symptoms worsened and I began having spells of having difficulty breathing (so much so that I would pull down on the neckline of my top to get fabric away from my throat). It kept happening over and over and finally sent me to the hospital one night last July. The spells kept coming over and over, difficulty breathing, dizziness, hot and cold flashes, and what I always called "mini head seizures" where I would not be visibly shaking but would feel like I was in my head. In December I visited my in-laws and started feeling better, like my old self. After returning home and I started feeling worse again, so I did a little bit of research to try and find a cause, starting first with our water. After comparing what was in our water that wasn't in my in-laws water I came up with the fact that our water was fluorinated. After asking my doctor she was like "eureka." HYPERactive thyroids were once treated with fluoride because it supresses thyroid function. She had me start drinking and cooking with bottled spring water that I have confirmed is not treated with fluoride, and low and behold the spells started fading. Not only have the spells faded away but my hypo symptoms have improved. It's something to keep in mind.
    Anonymous 42789 Replies Flag this Response
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