Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 , Every time I make a medicine adjustment, I get all kinds of new symptoms. For me, it takes a good 2 and a half weeks before the whole effect of the medicine adjustment really kicks in, and I begin to feel better than I did before I made the adjustment. I get dizzy and spacey too. Just to be on the safe side you should call your doctor and let him know. But don't stop the medicine without talking to your doc first. If you are hyper, you need an anti-thyroid medicine. There is also PTU you can switch to also. lil Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Hi, Just my two cents on the meds. The beta blocker could be causing the tiredness. Are you monitoring your heart rate? Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 , I agree with Jody....don't just stop your meds! When I was taking Tapazole, I had " the trots " real bad, assumed the medication was causing it, and just quit taking it. My doc read me the riot act, which I deserved even tho he is a crappy doc. (No pun intended, but it works!) I know now that the hyperthyroid was giving me the trots, not the meds! And it does take time for them to work! Call your doc and see what he says. God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Hi , In only 3 days, the Tap has had no chance to do anything. It can only prevent NEW excess thyroid hormone from being made. It can NOT do anything about the extra you already have in your system. It takes 4 to 8 weeks for anti thyroid drugs to work. In fact in 3 days it is possible it would even be to soon to see any allergic reaction, if one were to happen. It IS possible your dose of Propanenol is too high. Do you have an at home blood pressure cuff ? If not, get one. It will be a valuable tool as you go along. They are available at all pharmacies, run about $50 and run on batteries. Check your BP at different times of day, and always when you have had at least 15 or 20 min. to sit still and rest first. In fact, it was after I got my BP cuff, that I was truly able to see what 'triggers' set me off...iodine caused my BP to zip right up there, among other things. Hang in there kiddo. We all know the first month is hard physically and most confusing. -Pam L- assuming you will be calling your doctor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Hi , Just quickly now as having a houseful of people shortly. >>>Is there any danger in just stopping all of the medication? I have only >>>been on it all for a month or less. As I mentioned before, my labs >>>showed a normal T4 and T3 level, but a low TSH.<<< The answer is YES, there is danger in just stopping your beta blocker! It is imperative that we wean off of those so we don't bring on other problems. And I suspect that your beta blocker is what is causing these wretched feelings. You spoke about them before you ever started on the TAP. I don't think the tap is what is causing any of your problems, you haven't been on them long enough for that to occur. Call your doctor and discuss lowering your beta blocker, and in case he doesn't know this, it states in the package insert the necessity of WEANING from them. YOu should be able to get the package insert from the pharmacist or locate the mfg <look for inderal> and read the side effects/adverse reactions/coming off of them from their web site. Please , don't just quit ANY of these meds. Untreated graves can become deadly. Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 The Zelinski's wrote: > > I am looking for input from others who have been through this so I know if it is normal or not. I started on methimazole three days ago and am feeling worse than before I started. I am feeling really spacey, tired, depressed, emotional, have headaches, and still am having palpitations,tinnitus and hot flashes. The only time I feel good is when I first wake up in the morning. My husband keeps telling me to stop taking the medication. I am feeling like I want to stop taking it all right now! I am on propranolol 40 mg. three times a day, and methimazole 5 mg. three times a day. I really felt better before starting all of this medication. See your doc, I agree 3 days on Methimazole is not long, although I saw changes that quickly I was very hyper. I agree it is probably the betablockers but.... ATD medication is nearly always prescribed on the bases of hormone levels - if your fT3 and fT4 levels are genuinely normal, you probably don't need very much. So you might be a case worth starting on low doses. Similarly propranolol is to protect against symptoms, particularly heart symptoms, so what is your resting pulse. As I had less Propranolol than that when first diagnosed and my resting pulse was 120+ - okay I was young and comparitatively fit for someone 3 stone underweight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Thank you everyone for your input. It probably is the beta blocker causing the symptoms I am having. Simon, to answer your question my resting pulse has been hovering at around 60. I know the beta blockers have definitely slowed it down, I just don't understand why they haven't stopped the palpitations. I do have a blood pressure cuff and have noticed a big decrease in my BP since starting the propranolol. Controlling my blood pressure has been a problem for the past several years. Doctors had tried all kinds of medications before finding out my thyroid was high. I have been on beta blockers in the past atenol? (can't remember how it is spelled) and stopped taking them due to palpitations. I know they are supposed to have the opposite effect but on me they don't. I will call my doctor but he is starting to ignore what I say and act as if I am crazy like the other ones have. When I told him before that I was still have palpitations on the beta blockers his response to me was that I may need the RAI and to increase me dosage or propranolol. I am going to try real hard this week to get an appointment with an Endo somewhere even though my GP doesn't want me to. Meanwhile I think I am going to cut back on my dosage of propranolol and see if that helps some. I am hoping that maybe the ATD's will eventually control my BP and palpitations and I can wean off of the beta blockers completely. Thanks, Re: Is this normal??? The Zelinski's wrote: > > I am looking for input from others who have been through this so I know if it is normal or not. I started on methimazole three days ago and am feeling worse than before I started. I am feeling really spacey, tired, depressed, emotional, have headaches, and still am having palpitations,tinnitus and hot flashes. The only time I feel good is when I first wake up in the morning. My husband keeps telling me to stop taking the medication. I am feeling like I want to stop taking it all right now! I am on propranolol 40 mg. three times a day, and methimazole 5 mg. three times a day. I really felt better before starting all of this medication. See your doc, I agree 3 days on Methimazole is not long, although I saw changes that quickly I was very hyper. I agree it is probably the betablockers but.... ATD medication is nearly always prescribed on the bases of hormone levels - if your fT3 and fT4 levels are genuinely normal, you probably don't need very much. So you might be a case worth starting on low doses. Similarly propranolol is to protect against symptoms, particularly heart symptoms, so what is your resting pulse. As I had less Propranolol than that when first diagnosed and my resting pulse was 120+ - okay I was young and comparitatively fit for someone 3 stone underweight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 I must be an oddball because my BP was very low when I was diagnosed. The top number was rarely in triple digits and there was generally only about 20 points difference between the top and bottom numbers. Since stabilizing on Tapazole my BP is normal (yea). Nurses always comment on how good my BP is. Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 I haven't started my ATD's yet, hopefully will soon, but I am wondering if I should worry about my blood pressure if it has always been low. When it goes up it creeps into normal range. Kit --- Pamela Ladd wrote: > Hi , > > In only 3 days, the Tap has had no chance to do > anything. It can only > prevent NEW excess thyroid hormone from being > made. It can NOT do anything > about the extra you already have in your > system. > > It takes 4 to 8 weeks for anti thyroid drugs to > work. > > In fact in 3 days it is possible it would even > be to soon to see any > allergic reaction, if one were to happen. > > It IS possible your dose of Propanenol is too > high. > Do you have an at home blood pressure cuff ? If > not, get one. It will be a > valuable tool as you go along. They are > available at all pharmacies, run > about $50 and run on batteries. > > Check your BP at different times of day, and > always when you have had at > least 15 or 20 min. to sit still and rest > first. > > In fact, it was after I got my BP cuff, that I > was truly able to see what > 'triggers' set me off...iodine caused my BP to > zip right up there, among > other things. > > Hang in there kiddo. We all know the first > month is hard physically and most > confusing. > > -Pam L- assuming you will be calling your > doctor > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Hi Kit, ATDs do not affect BP, directly. When we are very hyper our BP does go up, and in time as ATDs bring us back to a normal thyroid range, in turn , our BP returns to normal. I remember only that you are having trouble with your eyes and are waiting for a diagnosis of hyper or Graves' ? Is that right ? SOME people have low BP issues if they are sent too hypo...so perhaps this would be a thing to watch for in the future. But as long as you are watching it and getting labs every 4 weeks, you should be fine. I always meant to comment on the statement that people that have RAI and do fine do NOT post to web sites or lists. Here is one more thought on that...most people that do fine on ATDs and people in remission after ATDs do NOT post to web sites either. Keep this in mind, and do not be discouraged by the majority of hypers you see that are having trouble. They come when they need help and then we often fine they are missing later on. So the lack of numerous success stories is only the nature of lists and sites. There are not many of us that hang around and make this a CAUSE. :-) -Pam L - who just peeked at the calendar...next Sunday is my 6 month anniversary of NO ATDs !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Yes, Pam, although my new labs are in I can't get a new appointment until week after next. I KNOW I am edgy and impatient because of being hyper (past TSH .004) but I just can't believe she isn't just trying to torture me because I insisted on antibody labs last time. Why can't she just call me? I am taking her a letter tomorrow listing my symptoms and concerns and asking for an endo referral. I don't want to throw another doctor under the bus, but I feel like insisting on more labs (I had to argue with three different people) has maybe ruined my relationship with this office. I don't know what I could have done differently, I am so weirded out, I am sure they just think I am a nut case. In my letter I asked for patience and understanding, and explained the typical Graves patient is a little on the edge. I hope that does some good. I am sure you are right about RAI patients and ATD patients being non-posters when they are happy. I hope I am among those who have spontaneous remission while I am on ATD's, then I won't have anything to argue about, will I? Kit --- Pamela Ladd wrote: > Hi Kit, > > ATDs do not affect BP, directly. > > When we are very hyper our BP does go up, and > in time as ATDs bring us back > to a normal thyroid range, in turn , our BP > returns to normal. > > I remember only that you are having trouble > with your eyes and are waiting > for a diagnosis of hyper or Graves' ? > Is that right ? > > SOME people have low BP issues if they are sent > too hypo...so perhaps this > would be a thing to watch for in the future. > But as long as you are watching > it and getting labs every 4 weeks, you should > be fine. > > I always meant to comment on the statement that > people that have RAI and do > fine do NOT post to web sites or lists. > > Here is one more thought on that...most people > that do fine on ATDs and > people in remission after ATDs do NOT post to > web sites either. > > Keep this in mind, and do not be discouraged by > the majority of hypers you > see that are having trouble. They come when > they need help and then we often > fine they are missing later on. > > So the lack of numerous success stories is only > the nature of lists and > sites. There are not many of us that hang > around and make this a CAUSE. :-) > > -Pam L - who just peeked at the calendar...next > Sunday is my 6 month > anniversary of NO ATDs !!! > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Kit... You said: In my letter I asked for patience and understanding, and explained the typical Graves patient is a little on the edge. It is NOT your job to educate these people, who presumably SHOULD know these things. It is also a very bad omen that these people have placed you in a position of apologizing for yourself, and thinking you might be a nut. Their job is to reassure you that what you are feeling is NORMAL for where you are right now. If I were you , I would USE this office right now to get your first ATDs and proper tests. That is ALL. You do NOT have to apologies to them for anything ! Do not let them engage you in conversation anymore than what is absolutely necessary. They are only going to upset you and waste a lot of time. The thing they do not realize ( besides the obvious facts of Graves' ) is these pointless conversations and their ignorance causes a Graves' patient to agonize over everything that was said...over and over and over... This is how our brains work right in the beginning... a replaying tape in our brain. So for your own protection, if you can keep it all short and sweet.... ask and answer only basic needed questions.... if they try to change the conversation... simply keep repeating your original question as many times as it takes to get an answer. And while all this is going on and you get started on ATDs, you will still have this office as a back up ...where you can get labs on the four week schedule. BUT you really need to be finding a new doctor. With this office as your back up, you will be able to search for a good doctor and not be in a panic while you are doing it. As you see, this disease is not a flash in the pan, and then you get to continue on in life and never think about it again after remission even. You are going to need a GOOD doctor soon, because once you are on the ATDs, you need help monitoring your dose CORRECTLY ! And a doctor that KNOWS the difference between allergic reactions and a real problem. Perhaps a good project for someone would be to put together a list of questions a newbie could ask a doctors or endos office, as a sort of preview of what the particular doctors experiences are with Graves' and what his or her preferred treatments are. You could then have this list in hand, spend some time on the phone interviewing possible doctors, and make a choice. Then make an appt. and keep this old doctor in the dark while you wait for the new docs appt time to finally come around. This would make for a smooth transition and avoid panic choices. This doctor sounds like one that will claim remission is rare...sigh... Keep in mind this , from Elaine : " GD and GO are both self-limiting diseases, which means that everyone eventually achieves remission. In about 20% of the cases, patients move on to hypothyroidism, and if the thyroid is ablated, patients also become hypothyroid. The remaining 80% of patients who use anti-thyroid drugs or holistic therapy, become euthyroid. Most people do so within 18 months, but many people don't achieve remission for 4 years or longer. Much has to do with your exposure to the environmental triggers of GD. " If folks were not limited to 1 year to 18 mo. on ATDs, this country would also have the great remission rates of other countries. ( and if they would realize diet DOES make a difference < big sigh > ) -Pam L - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Pam, I realize that I am normal in my response to this disease, but I feel there is some reason to educate a doctor as to what to expect from me. My ex-husband is a lawyer, so I tend to see that doctors often view difficult patients in terms of legal liability. Soothing this tension between the two of us certainly isn't for her benefit, but my own. There isn't much chance of her really understanding what a Graves patient is going through emotionally based on her training. I am pretty sure I am the only Graves patient she has yet diagnosed. I feel I am secure enough to give a little here, but am only doing it in order to be able to get what I need. Yes, she SHOULD be able to cure everything that is wrong with me, but it is physically impossible. There is a strange gulf between the expectation and the reality of Family Doctors, and there is NO research on what proper protocol should be on when to refer which patient, or when to screen for diseases based on symptoms. They are the first line of defense against ill health but after that, there seem to be no clear paths for patients or doctors to follow. They have to depend on recommendations from specialists, all of whom recommend screening for diseases of their specialty, no matter how rare they are, or what their likely incidence is. This is not possible. I know we all feel like we are 'fighting the power' and it is frustrating, but we have to look at all angles in getting the best care for ourselves. Thank you on the advice in office deportment, I think it is good advice. Once we are there, we have a right to get our questions asked and to get what we are paying for. Kit --- Pamela Ladd wrote: > Kit... > You said: > In my letter I asked > for patience and understanding, and explained > the > typical Graves patient is a little on the edge. > > It is NOT your job to educate these people, who > presumably SHOULD know these > things. > > It is also a very bad omen that these people > have placed you in a position > of apologizing for yourself, and thinking you > might be a nut. > > Their job is to reassure you that what you are > feeling is NORMAL for where > you are right now. > > If I were you , I would USE this office right > now to get your first ATDs and > proper tests. > That is ALL. You do NOT have to apologies to > them for anything ! > > Do not let them engage you in conversation > anymore than what is absolutely > necessary. They are only going to upset you and > waste a lot of time. The > thing they do not realize ( besides the obvious > facts of Graves' ) is these > pointless conversations and their ignorance > causes a Graves' patient to > agonize over everything that was said...over > and over and over... > This is how our brains work right in the > beginning... a replaying tape in > our brain. > > So for your own protection, if you can keep it > all short and sweet.... ask > and answer only basic needed questions.... if > they try to change the > conversation... simply keep repeating your > original question as many times > as it takes to get an answer. > > And while all this is going on and you get > started on ATDs, you will still > have this office as a back up ...where you can > get labs on the four week > schedule. BUT you really need to be finding a > new doctor. > With this office as your back up, you will be > able to search for a good > doctor and not be in a panic while you are > doing it. > > As you see, this disease is not a flash in the > pan, and then you get to > continue on in life and never think about it > again after remission even. > > You are going to need a GOOD doctor soon, > because once you are on the ATDs, > you need help monitoring your dose CORRECTLY ! > And a doctor that KNOWS the difference between > allergic reactions and a real > problem. > > Perhaps a good project for someone would be to > put together a list of > questions a newbie could ask a doctors or endos > office, as a sort of preview > of what the particular doctors experiences are > with Graves' and what his or > her preferred treatments are. > > You could then have this list in hand, spend > some time on the phone > interviewing possible doctors, and make a > choice. Then make an appt. and > keep this old doctor in the dark while you wait > for the new docs appt time > to finally come around. This would make for a > smooth transition and avoid > panic choices. > > This doctor sounds like one that will claim > remission is rare...sigh... > Keep in mind this , from Elaine : > " GD and GO are both self-limiting diseases, > which means that everyone > eventually achieves remission. In about 20% of > the cases, patients move on > to > hypothyroidism, and if the thyroid is ablated, > patients also become > hypothyroid. The remaining 80% of patients who > use anti-thyroid drugs or > holistic therapy, become euthyroid. Most people > do so within 18 months, but > many people don't achieve remission for 4 years > or longer. Much has to do > with your exposure to the environmental > triggers of GD. " > > If folks were not limited to 1 year to 18 mo. > on ATDs, this country would > also have the great remission rates of other > countries. ( and if they would > realize diet DOES make a difference < big sigh > > ) > > -Pam L - > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Same for me, exactly. Terry > From: k9mom1@... > Reply-To: graves_support > Date: Sun, 21 Jul 2002 20:04:26 EDT > To: graves_support > Subject: Re: Is this normal??? > > I must be an oddball because my BP was very low when I was diagnosed. The > top number was rarely in triple digits and there was generally only about 20 > points difference between the top and bottom numbers. > > Since stabilizing on Tapazole my BP is normal (yea). Nurses always comment > on how good my BP is. > > Doris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 In a message dated 7/22/2002 5:00:10 AM Pacific Daylight Time, kitkellison@... writes: > Yes, she SHOULD be able to cure everything that > is wrong with me, but it is physically > impossible. There is a strange gulf between the > expectation and the reality of Family Doctors, > and there is NO research on what proper protocol > should be on when to refer which patient, or when > to screen for diseases based on symptoms. Hi Kit! The above is an excerpt on what I thought was a tremendously grand post written by you! Thank you! I totally agree with everything you said in it! Ann Quote Link to comment Share on other sites More sharing options...
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