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  • thyroid storm????? Any thoughts PLEASE

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    Old 02-12-2009, 05:38 PM   #1
    petite11
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    thyroid storm????? Any thoughts PLEASE

    I am sure that I had a thyroid storm. At first I thought it was salmonella. I woke one morning at 5 am slid off my bed and lost complete control of my bowels and vomited at the same time. I crawled to the bathroom where I laid on the floor for 5 hours because I kept vomiting every half hour and had more diarhea. I got through the weekend at home without eating due to nausausness. I went to the doctor on Mon. who sent me right to the ER to get started on IV fluids. I had lost 8 pounds in about 3 days and my viens in my arms had collapsed. My tsh was immeasureable. It had never been that bad before. I hadnt been on my antithyroids for about 4 months because I had started going towards the underactive side so we thought my thyroid was finally burning itself out. I guess not. My heart rate was over 100 and it is usually around 60 and it was beating so extremely hard that I thought I was going to have a heart attack. My blood pressure was at 140 over 85 and I am never over 96 over 52. I was so scared. They put me on 20mg a day of Tapazole. It has been about 3 weeks now and I just did another tsh and it showed it at 0.02. The doctors office called and told me to drop it now to 10mgs a day. I just dont know if I should be dropping it yet to half the dose. After all I am still out of range. At the time I was in the hospital the T4Free was 1.63 and the T3reverse was 57 and the T4 was 15.1 I only know what the tsh means. I dont know anything about the others. I am still not feeling well but I am at least eating and drinking fluids and have gained about 3 pounds back. I would love to hear from anyone about this matter. Also is there such a thing as a thyroid specialist? It seems that most endocrinologists deal with diabetes much more than the thyroid.

     
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    Old 02-12-2009, 06:15 PM   #2
    AnnD
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    Re: thyroid storm????? Any thoughts PLEASE

    You certainly had a storm didn't you! Yes there are doctors that do specialize in the thyroid but you will have to do an online or phone book search of your area hospitals and or clinics to see who the specialists are. I went to one at a Seattle hospital endocrinology clinic they had several specialties within that specialty. Good luck as I understand your frustration as there are so few doctors that even have a clue. There isn't even and endocrinologist clinic in my state so I have to travel to another to get care.

     
    Old 02-12-2009, 06:25 PM   #3
    petite11
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    Re: thyroid storm????? Any thoughts PLEASE

    Thank you for your response. It sounds like you also think it was a thyroid storm?? They didnt even take me seriously at the hospital and were just calling it hypertyroidism. I have never been that sick just due to hyperthyroidism. I really thought that I was dying...and also the stool test ruled out salmanella or any other stomach virus.
    Thanks again,
    Gloria

     
    Old 02-13-2009, 08:51 AM   #4
    sparkie
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    Re: thyroid storm????? Any thoughts PLEASE

    I was at the ER a month ago with same heart rate and BP as you. The ER MD told me a thyroid storm is much worse...a heart rate around 200, much higher BP, and very elevated temp. I think the terminology is irrelevant..you need to get the Graves under control.

     
    Old 02-13-2009, 11:32 AM   #5
    petite11
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    Re: thyroid storm????? Any thoughts PLEASE

    Thank You Sparkie for your comments. By getting the graves under control do you mean getting the hyperthyroidism under control?

     
    Old 02-13-2009, 11:40 AM   #6
    sparkie
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    Re: thyroid storm????? Any thoughts PLEASE

    Are you following with your family physician or an endocrinologist? With an immeasurable TSH it sounds like you have Graves, although I am no Graves expert, and the symptoms you experienced with the high heart rate and BP (fun, aren't they?) are classic. Maybe someone else on the board can help with regard to appropriate dosing of Tapazole. Good luck! Hope you get on the road to recovery soon! Addendum: From what I have read on these boards, it seems like most on Tapazole are on it for longer than four months..I have seen 12-18 months.

    Last edited by sparkie; 02-13-2009 at 12:27 PM.

     
    Old 02-13-2009, 06:48 PM   #7
    petite11
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    Re: thyroid storm????? Any thoughts PLEASE

    Yes, Sparkie you are right.....I do have graves. I am under the impression that there is nothing that can be done about that but I can indeed get the thyroid under control. The high heart rate and bp are so scary especially when the heart beat feels like it is so hard it is coming out of my chest. I just found out today that my tsh is at 0.02 so at least it is able to be measured now. They cut the tapazole from 20 mgs a day to 10mgs. I have actually been on the tapazole for over 8 years but I had come off of it for four months because I was starting to go underactive. That is what happened I guess and why I got so sick because my tsh just went overactive again...not being on the med. I just cant beleive how sick it can make a person. That is why I thought I had salmonella.(but the stool test showed that not to be the case) Who would think that the thyroid could make you vomit and have diarhea? I do see a endocrinologist but I dont beleive he is taking my problem seriously.

     
    Old 02-13-2009, 07:19 PM   #8
    rexcatz
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    Re: thyroid storm????? Any thoughts PLEASE

    Sounds exactly like a thyroid storm. One year ago today I was released from the hospital after being there for 6 days for a storm. I had all your symptoms and more, and it's sure not fun is it? I'd been untreated hyperthyroid for at least 7 years and if doctors had taken me seriously it wouldn't have happened. I couldn't take PTU and tapazole first made me unable to eat because of the nasty taste in my mouth. When that finally stopped it made 90% of my hair fall out. I had RAI in June and am on synthroid. Although my levels are now normal, I'm still having some hypo symptoms so that needs to be addressed. Thyroid problems are one wild ride. If you don't feel like your doctor is taking you seriously, find another doctor. You deserve better.

     
    Old 02-13-2009, 08:13 PM   #9
    petite11
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    Re: thyroid storm????? Any thoughts PLEASE

    Thank you so much for your reply. I honestly beleive that I had thyroid problems since I was a teenager at least 35 years ago but because my tsh was always in range they never took it seriously. Finally about 8 years ago even though my tsh was in range the endo did a scan and the radioactive test showed how bad my thyroid actually was. I wish i could find a thyroid specialist. It seems that the endo's deal more with diabetes than the thyroid.
    I too have lost so much of my hair and it used to be so thick. Are you glad you did the RAI? and have you gained weight from doing it? I have not wanted to do it but after being so sick this time I am reconsidering. I also have never heard of someone being on tapazole for 8 years like I have been. i dont know if that is good or not. I really thought I was dying. Is that how you felt?
    You are right.....it is one wild ride and SO not fun!

     
    Old 02-15-2009, 04:46 PM   #10
    GravesGirl73
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    Re: thyroid storm????? Any thoughts PLEASE

    Hi! It could be you just had a virus which could intensify the Graves/hyper and make it worse. This happens. What dose were you on when you got off the Tapazole?To test for remission or spontaneous hypothyroid, you should have an antibodies test(tsi or TRab). If you are on a real low dose and still have a high tsh, then it is spontaneous hypo. If you are on a small dose and your tsh is normal and you have real low antibodies, then you're in remission.If you are on a substantial dose of Tap and are hypo, that doesn't mean you need to get off them, you just need to lower the dose.You have to wean off this slowly, not just stop . You need to make sure the tsh and the frees are hypo on a real small dose to get off them.

    Last edited by GravesGirl73; 02-15-2009 at 04:46 PM.

     
    Old 02-15-2009, 05:20 PM   #11
    petite11
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    Re: thyroid storm????? Any thoughts PLEASE

    Thank You for your reply.
    When I got off the tapazole about 4or 5 months ago my dosage was 5mg every other day for at least 5 years I would say. I have been on it at least 8 years. The doc took me off and put me on levothyroxine 50mcg because my tsh was starting to move towards the underactive side and he said my reflexes in my arms were very slow. Then I started getting hyperactive symtoms again (fast very hard heartbeat, my eyes want to stay wide open....I do have thyroid eye disease....very anxious etc.) Doc said just cut the dosage in half but my heart was pounding so much that I stopped the levo altogether and then I wasnt on anything for at least 4 months until I got so sick this time when my tsh was immeasureable.
    I have never had a tsi or trab test. I know that my thyroid peroxidase antibodies and throglobulin levels are always out of range but the doctor just tells me that means I have inflamation.
    My tsh never showed that I was hypo it just showed that it was headed in that direction when he took mo off the tapazole and put me on the levo.
    I would appreciate any more info and thoughts you may have.

     
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