Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi again, Pam, Yes, you have validated what I had felt - that I have palpitations and thumps at both hyper and hypo, and this makes diagnosing yourself difficult, to regulate your own medication. Thanks for sharing this! Arlene Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 I believe it is Elaine that finally said this. Before I was SO CONFUSED ! But once I knew BP can be a problem with hypo...suddenly things became clearer... I would lay in bed and feel so hypo it felt like it was hard to exist, much less turn over. Heck, I would lay there and work up the energy to turn over, and when I did, it felt like a major accomplishment. But as I laid there and felt my heart going crazy, I was thinking hyper. And my doctor still always thinks I am too hyper because of high BP, then retracts that AFTER he see my labs. I did keep good notes, and I know when I felt my best. But because of the BP he kept making me take more PTU...UNTIL Elaine cleared this up for me ! When I think of the simplicity of this it makes me so sad for the time I have lost. Why is this fact not in most books on on the web ? Ya know, when we are hypo and brain fog sets in...and we go searching for answers...this should be in bold print ! Though the opposite can be true for some. It seems to depend on the individual. -Pam- who can not seem to change my print type back = :-o Arlene and Bill Houghton wrote: Hi again, Pam, Yes, you have validated what I had felt - that I have palpitations and thumps at both hyper and hypo, and this makes diagnosing yourself difficult, to regulate your own medication. Thanks for sharing this! Arlene Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Yep! I agree completely with everything you have written, Pam. I am now astounded (since I have just come through this experience in the last two weeks) that my general practitioner, my endocrinologist and my naturopath DID NOT KNOW OR WARN ME that I could have palpitations and goiter or anything else which seems hyper, when I am hypo. This is what kept me on medication longer than I probably should have been. Now, around 8 days without PTU, no heart thumps, no other things which I thought were hyper, and it was because I was experimenting by going off my medication. Of course, folks, I was already really low on PTU (25 mg.) but my endo had said that this was such a low dose, that it shouldn't even matter. Yes it did. It caused hypo symptoms, but I didn't know it since I have not had blood work done since the beginning of December (thanks to my HMO). You are all a great group, and I don't think I would know anything if it weren't for this forum. Honestly, I have not had a whit of Graves' education, it seems, from any of my physicians, except my naturopath. Arlene From: Pam hyperthyroidism Sent: Thursday, January 10, 2002 9:40 PM Subject: Re: Hunky Dory I believe it is Elaine that finally said this. Before I was SO CONFUSED ! But once I knew BP can be a problem with hypo...suddenly things became clearer... I would lay in bed and feel so hypo it felt like it was hard to exist, much less turn over. Heck, I would lay there and work up the energy to turn over, and when I did, it felt like a major accomplishment. But as I laid there and felt my heart going crazy, I was thinking hyper. And my doctor still always thinks I am too hyper because of high BP, then retracts that AFTER he see my labs. I did keep good notes, and I know when I felt my best. But because of the BP he kept making me take more PTU...UNTIL Elaine cleared this up for me ! When I think of the simplicity of this it makes me so sad for the time I have lost. Why is this fact not in most books on on the web ? Ya know, when we are hypo and brain fog sets in...and we go searching for answers...this should be in bold print ! Though the opposite can be true for some. It seems to depend on the individual. -Pam- who can not seem to change my print type back = :-o Arlene and Bill Houghton wrote: Hi again, Pam, Yes, you have validated what I had felt - that I have palpitations and thumps at both hyper and hypo, and this makes diagnosing yourself difficult, to regulate your own medication. Thanks for sharing this! Arlene Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 My Family Doctor did not even tell me that I had Graves Disease. His nurse told me that my thyroid was 'hypo' and that I needed more blood work. Then the secretary of an internist I had never heard of called to book me an appointment. She was surprised that I didn't know what she was talking about but set me straight. My family doctor had referred me to her. This specialist did not confirm Graves Disease. She eventually sent me to an Endocrinologist. This is where I asked point blank do I have 'Graves Disease'. She said yes and gave me a Thyroid Foundation pamphlet about thyroid nodules (information was not very relevant). The question comes to mind, 'Are our doctors afraid to talk to us?' or perhaps, 'Do our doctors know anything about what they are treating?'. Once in Emerg I had to explain to a resident what Graves Disease is and recited off a list of symptoms. He went off a big book for more information. At least he was honest enough to admit he knew little about it. I guess the bottom line is, we're on our own. That is why forums are so important to us for sharing information. My vent for the day... Kate Arlene and Bill Houghton wrote: Yep! I agree completely with everything you have written, Pam. I am now astounded (since I have just come through this experience in the last two weeks) that my general practitioner, my endocrinologist and my naturopath DID NOT KNOW OR WARN ME that I could have palpitations and goiter or anything else which seems hyper, when I am hypo. This is what kept me on medication longer than I probably should have been. Now, around 8 days without PTU, no heart thumps, no other things which I thought were hyper, and it was because I was experimenting by going off my medication. Of course, folks, I was already really low on PTU (25 mg.) but my endo had said that this was such a low dose, that it shouldn't even matter. Yes it did. It caused hypo symptoms, but I didn't know it since I have not had blood work done since the beginning of December (thanks to my HMO). You are all a great group, and I don't think I would know anything if it weren't for this forum. Honestly, I have not had a whit of Graves' education, it seems, from any of my physicians, except my naturopath. ArleneFrom: Pam hyperthyroidism Sent: Thursday, January 10, 2002 9:40 PM Subject: Re: Hunky Dory I believe it is Elaine that finally said this. Before I was SO CONFUSED ! But once I knew BP can be a problem with hypo...suddenly things became clearer... I would lay in bed and feel so hypo it felt like it was hard to exist, much less turn over. Heck, I would lay there and work up the energy to turn over, and when I did, it felt like a major accomplishment. But as I laid there and felt my heart going crazy, I was thinking hyper. And my doctor still always thinks I am too hyper because of high BP, then retracts that AFTER he see my labs. I did keep good notes, and I know when I felt my best. But because of the BP he kept making me take more PTU...UNTIL Elaine cleared this up for me ! When I think of the simplicity of this it makes me so sad for the time I have lost. Why is this fact not in most books on on the web ? Ya know, when we are hypo and brain fog sets in...and we go searching for answers...this should be in bold print ! Though the opposite can be true for some. It seems to depend on the individual. -Pam- who can not seem to change my print type back = :-o Arlene and Bill Houghton wrote: Hi again, Pam, Yes, you have validated what I had felt - that I have palpitations and thumps at both hyper and hypo, and this makes diagnosing yourself difficult, to regulate your own medication. Thanks for sharing this! Arlene Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Thank you, Pam. This is reassuring, too. I shall wait, then, for a few weeks and try and ignore it until then. It's all the uncertainty as much as anything else, that is so wearing. Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 And I wouldn't know it at all but for these last few emails from you guys. And that's with seeing my doctor, another doctor, an endocrinologist and a cardiologist. Thank you all. Maybe I'll make up a little note to pass around to these medical professionals and entitle it: Things you don't know you don't know and your patients don't know they don't know either, but would be a bloody sight better off if they did know. Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Sounds like a great plan. Just don't put your name on it. Or, come to think of it, any of ours. Not to sound paranoid but doctors' egos are very fragile and they do hate anything that they perceive threatens them. :-) Alison wrote: And I wouldn't know it at all but for these last few emails from you guys. And that's with seeing my doctor, another doctor, an endocrinologist and a cardiologist. Thank you all. Maybe I'll make up a little note to pass around to these medical professionals and entitle it: Things you don't know you don't know and your patients don't know they don't know either, but would be a bloody sight better off if they did know. Re: Hunky Dory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Oh, ok. You're absolutely right, I know. I'll make it anonymous and get a golden eagle to drop it out of a clear blue sky onto them when they're playing golf. Then they won't have a clue. (So, tell me something new.) Re: Hunky Dory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 In a message dated 1/11/2002 12:53:49 PM Eastern Standard Time, Fraserk@... writes: the bottom line is, we're on our own. Dear Kate, This is so true! I wish I had known this when I was younger, but at least I knew it by the time I developed Graves, so I could save my thyroid. I wish there was a way to let everyone know how incompetent most doctors are, and how little they know. AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Kate, The medical community can be dangerous to our health. That's why it's so important for us and everyone for that matter to research and find forums to ask questions about health issues. Never assume the docs know everything. Also don't take what the docs say as gospel.....ask questions whether they like it or not and keep asking if you don't get a satisfactory answer!! Remember, we pay their salary!! Take care, Mona Hunky Dory > , > I had forgotten this one...hunky dory...hehehe > > Again to add to the survey, my heart has problems both when I am hypo and when hyper. > Not knowing this can happen when hypo had me on too much medication for a long time, as my > endo treats by symptoms not just labs. But why he didn't tell me this happens when hypo is > beyond me. In fact we just had a fruitless 'argument' about my needing more medication ( > we hadn't done the labs yet ) , because of rapid heartbeat, and my reporting of the scary > thumping, that is more noticeable at night, since I can more easily ignore it during the > day. > I have reduced my PTU a bit more now, and the heart hiccuping is gone again.And I once > again ,awake with hope for the new day. :-) > Sounds like you are in good hands with the heart thing. If I were you, I would not worry > too much until you get your thyroid levels back up a bit, and see if this will be true for > you also. > -Pam- > > > > > > Quote Link to comment Share on other sites More sharing options...
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