Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 I'd call my doctor's office and ask if they would order a complete blood count or CBC. This will include a white blood cell count. I'd also ask for a beta strep screen since this is one of the most common causes of a sore throat. People on ATDs can develop agranulocytosis, which is a really low white blood cell count, especially white blood cells called segmented granulocytes. This is often accompanied by a sore throat. It's a rare side effect and usually occurs within the first 4 months of treatment. Even if you've been on treatment longer, you need to make sure this isn't happening. The blood test will tell this. If you do have beta strep, which is a common winter infection, you want to know so you can start treatment with antibiotics. Untreated, strep can lead to complications including heart disease. If it's not strep, the lab will run a culture on the swab to make sure your sore throat isn't from some other type of bacteria. Let us know how things turn out. PS. you don't need an appointment. you can call and ask them to order the tests. then you can have them done at a hospital outpatient lab. they can phone in the orders. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hi , Some people go into remission after only a few weeks while others take much longer. As a guideline, many docs say to use the drugs 18mo-24 mo before even considering more aggressive treatment. But, if a person goes into remission before this time frame, they can safely go off the drugs. If you become hypo from the drugs, it shows that you're responding to them. It doesn't mean you're in remission because the drug dose may just be too high. The key is to find the dose that keeps you euthyroid (normal thyroid hormone levels) and stay on this dose until you achieve remission. To find out if you're in remission, some docs will lower the dose and see if you become hypo. This doesn't necessarily show that you're in remission--it just shows that this dose is still too high. I've had friends who were then taken off the drug and then they had a relapse. A test for TSI (thyroid stimulating immunoglobulins) is what's needed to show that you're in remission. if the level is negative, the antibodies that cause hyperthyroidism are gone. Then you can safely wean off the drugs. Otherwise it's a guess. Some people do fine but many find their hyper symptoms start returning. The drugs help keep these levels down, but if your body is still producing them, without the drugs the levels will start to rise. It does get confusing so ask me if you still have questions. In the meantimes, I'd call and get the CBC and throat swab. If you're in the United States, I'd have to add that we do a large number of these tests on emergency room patients--you'd be surprised at the number of people who come into the ER in the middle of the night for sore throats. Most ER's have fast track or outpatient clinics attached to them that are open until around midnite. This is a better option and one that your insurance company is more likely to cover. Sometimes the wait is long, but at least you'd get antibiotics that day if you do have strep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hi , If your A & E is anything like our emergency room system, you'd be surprised at the number of people who come into the ER for sore throats and colds. If you can get in for the sore throat and then mention the carbimazole while you're there they should also do a CBC. Have a Merry Christmas, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Dawn Rose brings up a good point. Many people with GD normally run a low white blood cell count so it's good to have a previous level to compare your white count too. Otherwise, they may become alarmed unnecessarily. Strep throat is much more common than agranulocytosis so be sure they swab your throat. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Also - I need to be able to decide about this because I won't be able to see a doctor for over a week now with it being Christmas and tomorrow we go to my mother's as well. I was wondering - I've gone hypo and I'm now only on 5mg carbimazole twice a day - do you think it possible that if I came off it because of the continuing sore throat I might just go into remission - why do they keep people on it for a year or 18 months if they've already gone hypo after just 5 months? Thank you Elaine. I hope you're there. This is worrying me a bit. Happy Christmas, Elaine - help! Hello Elaine I was hoping for some advice - I don't want you to feel under pressure so let's just say that I'd be interested to know what you would do if it was you... A couple of days ago I got a really really sore throat. Yesterday it progressed and I'm now in fully fledged cold-mode - the sore throat got better and now it's got worse again. My doctor is away until the end of the year otherwise I'd go and see her. I'm fairly sure that if I just saw whoever was on duty they would look it up in the book and see that under carbimazole it says that if you get a sore throat you should stop taking the carbimazole immediately - and they'd panic and tell me to stop taking it immediately. I don't want to stop taking it just because of someone's panic. If someone who was reasonably well informed told me to stop taking it then I maybe would. The reason I don't want to just stop it is that - if I have understood this correctly - if you mess about with your dose of carbimazole too much (eg stop taking it and then start taking it again) then your chances of full remission when you deliberately stop taking it are lessened. In the meantime I have no way of telling if I've just got a cold and attendant sore throat or whether I have this (very rare) effect of carbimazole where it messes about with blood cell production. What would you do if it was you? Thanking you very much in advance for your advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hello Elaine Thank you so much for being there. Trouble is that I can't call my doctor's office and ask for a CBC without seeing a doctor. If I saw a doctor they would simply look in their book where it says that if someone on carbimazole gets a sore throat then they should just stop taking the drug and that would be that. That's why I'm trying to make up my mind myself - either to go to them being pretty certain they would simply stop the carbimazole because they won't take anything else into account - or whether to just not go to them and keep going - or even stopping it myself, but at least doing it on a reasoned basis. The other trouble is that I leave my home town tomorrow because we're spending Christmas with my mother who lives a couple of hours away and that takes me into even more dodgy ground - unless I hit really lucky and just happened to get a doctor who knows something about hyperT - but, in general they simply don't know anything. My own doctor is away until the end of the year. I'll be offline, too, until Thursday night when I come home so I won't even be able to talk to you. <sigh> Maybe I can just convince myself that it's simply a cold like everyone else around here is getting, and dose myself up with vit C and it'll be fine. You have made me think about it more, though and I'm wondering if there's any point in ringing up something that's been set up recently called the NHS helpline - don't know if they'd be any use, but I might try it. Thank you very much, Re: Elaine - help! I'd call my doctor's office and ask if they would order a complete blood count or CBC. This will include a white blood cell count. I'd also ask for a beta strep screen since this is one of the most common causes of a sore throat. People on ATDs can develop agranulocytosis, which is a really low white blood cell count, especially white blood cells called segmented granulocytes. This is often accompanied by a sore throat. It's a rare side effect and usually occurs within the first 4 months of treatment. Even if you've been on treatment longer, you need to make sure this isn't happening. The blood test will tell this. If you do have beta strep, which is a common winter infection, you want to know so you can start treatment with antibiotics. Untreated, strep can lead to complications including heart disease. If it's not strep, the lab will run a culture on the swab to make sure your sore throat isn't from some other type of bacteria. Let us know how things turn out. PS. you don't need an appointment. you can call and ask them to order the tests. then you can have them done at a hospital outpatient lab. they can phone in the orders. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Trouble is that I know - because the endo told me - that they never do a TSI test - in other words they just keep you on ATDs for 18 months because that's what their book says and then they take you off and then they reach for the RAI stuff. I wonder if, in the UK, I went to A & E they'd do something about my throat without necessarily telling me to stop the carbimazole - actually, they'd be more likely to send me home because of wasting their time with something as petty as a sore throat... On the other hand, if I ring the NHS helpline thing they may suggest something like going to the A & E... hmmm Thank you again, Elaine. It is so comforting to find you there when I needed you. Take care and have a wonderful Christmas, Re: Elaine - help! Hi , Some people go into remission after only a few weeks while others take much longer. As a guideline, many docs say to use the drugs 18mo-24 mo before even considering more aggressive treatment. But, if a person goes into remission before this time frame, they can safely go off the drugs. If you become hypo from the drugs, it shows that you're responding to them. It doesn't mean you're in remission because the drug dose may just be too high. The key is to find the dose that keeps you euthyroid (normal thyroid hormone levels) and stay on this dose until you achieve remission. To find out if you're in remission, some docs will lower the dose and see if you become hypo. This doesn't necessarily show that you're in remission--it just shows that this dose is still too high. I've had friends who were then taken off the drug and then they had a relapse. A test for TSI (thyroid stimulating immunoglobulins) is what's needed to show that you're in remission. if the level is negative, the antibodies that cause hyperthyroidism are gone. Then you can safely wean off the drugs. Otherwise it's a guess. Some people do fine but many find their hyper symptoms start returning. The drugs help keep these levels down, but if your body is still producing them, without the drugs the levels will start to rise. It does get confusing so ask me if you still have questions. In the meantimes, I'd call and get the CBC and throat swab. If you're in the United States, I'd have to add that we do a large number of these tests on emergency room patients--you'd be surprised at the number of people who come into the ER in the middle of the night for sore throats. Most ER's have fast track or outpatient clinics attached to them that are open until around midnite. This is a better option and one that your insurance company is more likely to cover. Sometimes the wait is long, but at least you'd get antibiotics that day if you do have strep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hi , It's Dawn Rose here; my experience with sore throats and ATDs in the UK is that they don't mess around with it. I had sore throats and they whipped me straight off the drugs and took blood AND they found my white blood cell count was down so they said I couldn't take ATDs. Agranulocytosis is very rare, but very serious, so if you go to A & E I think they will do a blood test fairly sharpish for you and if they understand what the problem is, I doubt they will have you sitting there in the waiting room with all those germs for very long. You should get the blood test results really quick and then you will know if you have anything to worry about or not. I would do the blood test if I were you; it is useful to have a previous blood test level to compare the one you are about to have done with. Must fly DAWN ROSE >From: " Alison " <moocher@...> >Reply-hyperthyroidism ><hyperthyroidism > >Subject: Re: Elaine - help! >Date: Sun, 23 Dec 2001 20:22:56 -0000 > >Trouble is that I know - because the endo told me - that they never do a >TSI test - in other words they just keep you on ATDs for 18 months because >that's what their book says and then they take you off and then they reach >for the RAI stuff. > >I wonder if, in the UK, I went to A & E they'd do something about my throat >without necessarily telling me to stop the carbimazole - actually, they'd >be more likely to send me home because of wasting their time with something >as petty as a sore throat... On the other hand, if I ring the NHS helpline >thing they may suggest something like going to the A & E... hmmm > >Thank you again, Elaine. It is so comforting to find you there when I >needed you. > >Take care and have a wonderful Christmas, > > Re: Elaine - help! > > > Hi , > Some people go into remission after only a few weeks while others take >much longer. As a guideline, many docs say to use the drugs 18mo-24 mo >before even considering more aggressive treatment. But, if a person goes >into remission before this time frame, they can safely go off the drugs. > If you become hypo from the drugs, it shows that you're responding to >them. It doesn't mean you're in remission because the drug dose may just be >too high. The key is to find the dose that keeps you euthyroid (normal >thyroid hormone levels) and stay on this dose until you achieve remission. >To find out if you're in remission, some docs will lower the dose and see >if you become hypo. This doesn't necessarily show that you're in >remission--it just shows that this dose is still too high. I've had friends >who were then taken off the drug and then they had a relapse. > A test for TSI (thyroid stimulating immunoglobulins) is what's needed to >show that you're in remission. if the level is negative, the antibodies >that cause hyperthyroidism are gone. Then you can safely wean off the >drugs. Otherwise it's a guess. Some people do fine but many find their >hyper symptoms start returning. The drugs help keep these levels down, but >if your body is still producing them, without the drugs the levels will >start to rise. > It does get confusing so ask me if you still have questions. In the >meantimes, I'd call and get the CBC and throat swab. If you're in the >United States, I'd have to add that we do a large number of these tests on >emergency room patients--you'd be surprised at the number of people who >come into the ER in the middle of the night for sore throats. Most ER's >have fast track or outpatient clinics attached to them that are open until >around midnite. This is a better option and one that your insurance company >is more likely to cover. Sometimes the wait is long, but at least you'd get >antibiotics that day if you do have strep. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hello Dawn Rose - this is what I've been worried about - I don't want a panic reaction and to lose out on the opportunity of getting sorted on ATDs just because no reasoned approach has been used. However, apparently I couldn't go to A & E for a blood count anyway - I have now found this out. So, if you were taken off ATDs, what happened to your hyperT? Have a lovely Christmas, Re: Elaine - help! > > > > > > Hi , > > Some people go into remission after only a few weeks while others take > >much longer. As a guideline, many docs say to use the drugs 18mo-24 mo > >before even considering more aggressive treatment. But, if a person goes > >into remission before this time frame, they can safely go off the drugs. > > If you become hypo from the drugs, it shows that you're responding to > >them. It doesn't mean you're in remission because the drug dose may just be > >too high. The key is to find the dose that keeps you euthyroid (normal > >thyroid hormone levels) and stay on this dose until you achieve remission. > >To find out if you're in remission, some docs will lower the dose and see > >if you become hypo. This doesn't necessarily show that you're in > >remission--it just shows that this dose is still too high. I've had friends > >who were then taken off the drug and then they had a relapse. > > A test for TSI (thyroid stimulating immunoglobulins) is what's needed to > >show that you're in remission. if the level is negative, the antibodies > >that cause hyperthyroidism are gone. Then you can safely wean off the > >drugs. Otherwise it's a guess. Some people do fine but many find their > >hyper symptoms start returning. The drugs help keep these levels down, but > >if your body is still producing them, without the drugs the levels will > >start to rise. > > It does get confusing so ask me if you still have questions. In the > >meantimes, I'd call and get the CBC and throat swab. If you're in the > >United States, I'd have to add that we do a large number of these tests on > >emergency room patients--you'd be surprised at the number of people who > >come into the ER in the middle of the night for sore throats. Most ER's > >have fast track or outpatient clinics attached to them that are open until > >around midnite. This is a better option and one that your insurance company > >is more likely to cover. Sometimes the wait is long, but at least you'd get > >antibiotics that day if you do have strep. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hello Elaine I have now got hold of the NHS direct line service and been told not to go to A & E for blood tests or sore throats or anything like that - had to get hold of the duty doctor from my doctor's surgery - which is what I didn't want to do really, but he turned out to be quite sensible <huge sigh of relief> - he didn't immediately say to stop the carbimazole - he said to go to surgery tomorrow and get CBC then, so I shall attempt to do that and try to avoid any hysterical doctors whilst I'm there. Trouble is that they want to take the safest option - not necessarily for the patient (ie the long term success of ATD treatment) - but to cover themselves. So we shall see tomorrow. Christmas Eve and I'll be messing about at my doctor's surgery with this and also messing about at a different surgery trying to get results from my son's chest x-ray. Pity we can't put Christmas off for a week, but there you go. It all adds variety to life I guess... Take care. Have a lovely time, Re: Elaine - help! Hi , If your A & E is anything like our emergency room system, you'd be surprised at the number of people who come into the ER for sore throats and colds. If you can get in for the sore throat and then mention the carbimazole while you're there they should also do a CBC. Have a Merry Christmas, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Thanks for this. Have to see if I can find a previous WBC. Re: Elaine - help! Dawn Rose brings up a good point. Many people with GD normally run a low white blood cell count so it's good to have a previous level to compare your white count too. Otherwise, they may become alarmed unnecessarily. Strep throat is much more common than agranulocytosis so be sure they swab your throat. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Hi , It's ARlene here...sorry I couldn't get to you sooner, but we just bought a new computer because the old one was freezing up all the time, and now we are having problems transferring everything, etc. When I first went on PTU, back in May, I got an extremely sore throat around the end of May after being on the medication for 2 weeks. I knew about this problem with the sore throat and ATDs, and didn't get much good advice from my doctor at the time. However, I did want to reassure you that there have been others who had this same thing, and it was, indeed, just a cold. If you want to be sure, is it possible for you to go into the emergency room and insist on a blood test without the doctor's approval, or one of the doctor's in the emergency room? I think it is really OK to ask your doctor, under these circumstances, for an approval for a blood test. Interestingly, my new endocrinologist gave me a blank approval sheet for a blood test, in case I needed one, for a sore throat! Good luck, , and take care. Sorry I haven't been able to follow this whole thing because I have not been online for a while. Arlene Re: Elaine - help! I'd call my doctor's office and ask if they would order a complete blood count or CBC. This will include a white blood cell count. I'd also ask for a beta strep screen since this is one of the most common causes of a sore throat. People on ATDs can develop agranulocytosis, which is a really low white blood cell count, especially white blood cells called segmented granulocytes. This is often accompanied by a sore throat. It's a rare side effect and usually occurs within the first 4 months of treatment. Even if you've been on treatment longer, you need to make sure this isn't happening. The blood test will tell this. If you do have beta strep, which is a common winter infection, you want to know so you can start treatment with antibiotics. Untreated, strep can lead to complications including heart disease. If it's not strep, the lab will run a culture on the swab to make sure your sore throat isn't from some other type of bacteria. Let us know how things turn out. PS. you don't need an appointment. you can call and ask them to order the tests. then you can have them done at a hospital outpatient lab. they can phone in the orders. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 Dear Elaine, Question: I also have a sore throat that turned into a cold--the throat no longer really hurts, but my head is clogged and I'm coughing. Could this possibly be strep? I've never had strep (to my knowledge), but people who have tell me it usually comes on suddenly, is accompanied by fever (though this is not always the case), and is usually very painful. With all this talk of strep and heart disease, I'm starting to get worried and wonder if ALL sore throats should be checked out. I always thought that if the sore throat goes away and the symptoms become more nasal that you can R/O strep. What do you think? Thanks, AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 Hi Joan, I've never had strep, but my daughter gets it from time to time. From what I hear it's very painful, but like with all ailments, things seem to vary. Often the doctors are surprised at the results, that is, they're certain one will be positive and isn't and in some cases, where they think the patient is exaggerating things, the test is positive. One ER doctor told me he can smell strep, that is, besides a sore throat, it causes a foul throat odor. Another doctor told me you can see patches of strep and the throat appears inflamed. Usually, my sore throats come with allergies and sinus drainage and only last a day. If it's strep, it should persist. It never hurts to get it checked out. The 22year old son of one of my friends is now waiting for a heart transplant because his untreated strep moved on to his cardiovascular system. Let us know what you decide to do, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 Dear Elaine, That's a real scary story! Does that mean that we should always check out every sore throat--I imagine the ERs would all be jammed! I called my doctor this morning and described my symptoms. She said I have a bacterial infection, and prescribed Zithromax. (I don't think she thought it was strep, just an upper-respitory infection). I've never taken this drug before, and don't like to take drugs (I do lots of herbs and supplements instead, which I think are effective if I catch something early on)--however, I've given in, and am taking it. I never take anything lightly when it comes to Western medicine, as all on this board know from my refusal to consider RAI (which I'm SOOOO glad about). When I was in my 20s, I had lots of bronchitis, and was constantly put on antibiotics, which I'm certain is what caused subsequent yeast infections, maybe my sinus problems, and who knows what else? So, I am very reluctant to use Western meds (I'm happy I used Tapezole and Atenol, but they seemed the lesser of 2 evils). So, I am now taking Zithromax. Any feedback? Regards, AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 That's a good broad-spectrum antibiotic, AntJoan. Nothing pansy about that one. And you only have to take it for five days, two pills the first day, one each subsequent day. It's much easier than penicillin and works better, in my opinion. If you're susceptible to yeast infections, though, bump up the acidophillus, pronto (a tub of yogurt wouldn't be out of place, either)! I always used to get yeast infections when I started an antibiotic. I'd beg for a prescription of Diflucan, just in case, each time. My little girl got yeast infections, too, ever since she was a baby. No more, though. And no more Asthmatic Bronchitis, either. Not since using our supplement. And, by the way, if you suspect strep next time, check the back of your throat for white bumps. That's why it's so painful. Merry Christmas, everyone! Donna http://trak.to/life www.reliv.com Take control of your health! AntJoan@... wrote: Dear Elaine, That's a real scary story! Does that mean that we should always check out every sore throat--I imagine the ERs would all be jammed! I called my doctor this morning and described my symptoms. She said I have a bacterial infection, and prescribed Zithromax. (I don't think she thought it was strep, just an upper-respitory infection). I've never taken this drug before, and don't like to take drugs (I do lots of herbs and supplements instead, which I think are effective if I catch something early on)--however, I've given in, and am taking it. I never take anything lightly when it comes to Western medicine, as all on this board know from my refusal to consider RAI (which I'm SOOOO glad about). When I was in my 20s, I had lots of bronchitis, and was constantly put on antibiotics, which I'm certain is what caused subsequent yeast infections, maybe my sinus problems, and who knows what else? So, I am very reluctant to use Western meds (I'm happy I used Tapezole and Atenol, but they seemed the lesser of 2 evils). So, I am now taking Zithromax. Any feedback? Regards, AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2001 Report Share Posted December 26, 2001 Hiya , Sorry for the delay in answering - Chrismas crept up on me. To answer your question about my experience with ATDs and low white blood cell counts: I was put on a high dose of ATDs initially and I had a sore throat within a week... went back to the docs, and they told me to stop taking the tablets and gave me a blood test to see if my white blood cells were within range. I was very thyrotoxic at this stage (I think it was August/September 2000) - the blood test showed that my neutrophil count was below the normal range so they tried me on the alternative ATD = PTU or to give it the full (and mispelt? name) propilthyoracil. Again I got a sore throat and the second blood test showed I still had a low blood cell count. They took me off this second lot of ATDs and gave me antibiotics for the sore throat. I had to wait about six weeks to see the specialist. This was an awful time for me as I was just VERY hyper and only taking Beta blockers; I had refused RAI and told the doctors that if I really couldn't do ATDs, then I would have surgery. I am sure I was already down in the books as a " difficult patient " . When I did finally get to see the endocrinologist, he said surgery was not an option as my thyroid gland was very dense and very small, so it would be impossible to find a surgeon who would operate on me as I might bleed to death on the table. By this point I just didn't believe half of the stuff they said, and I am still not sure how much of what they told me was pressure to go forward with the RAI and how much was useful and truthful information. I was basically told that I would have to have RAI, that I had no other options. AT this point I dragged out my old medical records and pointed to the fact that my neutrophil count had been low BEFORE I ever was even diagnosed and long before I had taken and ATD. Also, my neutrophil count did not go up and down with the administration and withdrawal of ATDs, it just stayed consistently low. I guessed from this that I was not facing the life threatening agranulocytosis and argued my case tearfully with an intern who went and checked with his boss who agreed with me and put me back on ATDs " for another go " . Having access to and understanding of my own medical records has been invaluable to me.The sad thing is, I lost two months to really horrible hyperthyroidism, whilst I was waiting to see the speciallist. This board was SO helpful during that period, Elaine advised me that a low neutrophil count can in fact be one of the symptoms of Graves' Disease in the first place. Others advised me that even if my neutrophil count could be attributed to my use of ATDs, that possibly the dose was just too high for me and I should try reducing the dose rather than not using ATDs at all (I think conventional medicene sees this as too risky - I was told that current research shows that the incidence of agranulocytosis is not dose related: that is, it doesnt' make any difference how much you take, if you are going to react like that to the drug, you'll react to a little or to alot.) Anyway - I went back on ATDs and am (one year on) now on a maintainance dose. My neutrophil count finally came back to normal and stayed there about four months ago. I am not sure if that is an indication that I am heading for remission or not. Think it must be a good sign. I still have alot of health problems biting at my heels that I feel may be unrelated to my thyroid problem, but am glad that I stood my ground and argued. In your position I would always go for the blood test if I could get one - the more information you can have available to you the better I reckon. Hope Christmas was grand for you and that all is wellll. DAWN ROSE >From: " Alison " <moocher@...> >Reply-hyperthyroidism ><hyperthyroidism > >Subject: Re: Elaine - help! >Date: Sun, 23 Dec 2001 22:27:42 -0000 > >Hello Dawn Rose - this is what I've been worried about - I don't want a >panic reaction and to lose out on the opportunity of getting sorted on ATDs >just because no reasoned approach has been used. However, apparently I >couldn't go to A & E for a blood count anyway - I have now found this out. > >So, if you were taken off ATDs, what happened to your hyperT? > >Have a lovely Christmas, > > Re: Elaine - help! > > > > > > > > > Hi , > > > Some people go into remission after only a few weeks while others >take > > >much longer. As a guideline, many docs say to use the drugs 18mo-24 mo > > >before even considering more aggressive treatment. But, if a person >goes > > >into remission before this time frame, they can safely go off the >drugs. > > > If you become hypo from the drugs, it shows that you're responding >to > > >them. It doesn't mean you're in remission because the drug dose may >just >be > > >too high. The key is to find the dose that keeps you euthyroid (normal > > >thyroid hormone levels) and stay on this dose until you achieve >remission. > > >To find out if you're in remission, some docs will lower the dose and >see > > >if you become hypo. This doesn't necessarily show that you're in > > >remission--it just shows that this dose is still too high. I've had >friends > > >who were then taken off the drug and then they had a relapse. > > > A test for TSI (thyroid stimulating immunoglobulins) is what's >needed >to > > >show that you're in remission. if the level is negative, the antibodies > > >that cause hyperthyroidism are gone. Then you can safely wean off the > > >drugs. Otherwise it's a guess. Some people do fine but many find their > > >hyper symptoms start returning. The drugs help keep these levels down, >but > > >if your body is still producing them, without the drugs the levels will > > >start to rise. > > > It does get confusing so ask me if you still have questions. In the > > >meantimes, I'd call and get the CBC and throat swab. If you're in the > > >United States, I'd have to add that we do a large number of these tests >on > > >emergency room patients--you'd be surprised at the number of people who > > >come into the ER in the middle of the night for sore throats. Most ER's > > >have fast track or outpatient clinics attached to them that are open >until > > >around midnite. This is a better option and one that your insurance >company > > >is more likely to cover. Sometimes the wait is long, but at least you'd >get > > >antibiotics that day if you do have strep. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hello Arlene I hate having computer problems - these days I feel really cut off if I don't have a working computer - we've had no phone line either for the last week or so. Anyway, hope yours all sorted out now. What happened in the end with my sore throat was that I went to my doctor's surgery the following morning having discovered I couldn't go to A & E here - and the nurse there took a blood sample. No swab from my throat was taken at all and no suggestion of antibiotics was made. Our doctors are in a bit of a panic now and don't prescribe antibiotics if they can possibly help it. The results from my blood test wouldn't come through for a week... A week later I discovered that my blood counts were ok. So that was nice to know... I don't have the sore throat anymore although I do have hoarseness quite a lot and still have all the cold symptoms. Really weird bug. Happy New Year! Re: Elaine - help! Hi , It's ARlene here...sorry I couldn't get to you sooner, but we just bought a new computer because the old one was freezing up all the time, and now we are having problems transferring everything, etc. When I first went on PTU, back in May, I got an extremely sore throat around the end of May after being on the medication for 2 weeks. I knew about this problem with the sore throat and ATDs, and didn't get much good advice from my doctor at the time. However, I did want to reassure you that there have been others who had this same thing, and it was, indeed, just a cold. If you want to be sure, is it possible for you to go into the emergency room and insist on a blood test without the doctor's approval, or one of the doctor's in the emergency room? I think it is really OK to ask your doctor, under these circumstances, for an approval for a blood test. Interestingly, my new endocrinologist gave me a blank approval sheet for a blood test, in case I needed one, for a sore throat! Good luck, , and take care. Sorry I haven't been able to follow this whole thing because I have not been online for a while. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hello Dawn Rose Thanks for your reply. I'm sorry to hear what a rough time you had, but glad to hear how well you're doing now. And it's thanks to your own efforts and initiatives. It's frightening to think of what must happen to people who are unable to think for themselves. I'm ok. The blood counts were all right in the end. I've gone hypo now so need to work out what to do next... Happy New Year! Re: Elaine - help! > Hiya , > Sorry for the delay in answering - Chrismas crept up on me. > > To answer your question about my experience with ATDs and low white blood > cell counts: > > I was put on a high dose of ATDs initially and I had a sore throat within a > week... went back to the docs, and they told me to stop taking the tablets > and gave me a blood test to see if my white blood cells were within range. > I was very thyrotoxic at this stage (I think it was August/September 2000) - > the blood test showed that my neutrophil count was below the normal range so > they tried me on the alternative ATD = PTU or to give it the full (and > mispelt? name) propilthyoracil. > Again I got a sore throat and the second blood test showed I still had a low > blood cell count. They took me off this second lot of ATDs and gave me > antibiotics for the sore throat. I had to wait about six weeks to see the > specialist. > > This was an awful time for me as I was just VERY hyper and only taking Beta > blockers; I had refused RAI and told the doctors that if I really couldn't > do ATDs, then I would have surgery. I am sure I was already down in the > books as a " difficult patient " . > > When I did finally get to see the endocrinologist, he said surgery was not > an option as my thyroid gland was very dense and very small, so it would be > impossible to find a surgeon who would operate on me as I might bleed to > death on the table. By this point I just didn't believe half of the stuff > they said, and I am still not sure how much of what they told me was > pressure to go forward with the RAI and how much was useful and truthful > information. I was basically told that I would have to have RAI, that I had > no other options. > > AT this point I dragged out my old medical records and pointed to the fact > that my neutrophil count had been low BEFORE I ever was even diagnosed and > long before I had taken and ATD. Also, my neutrophil count did not go up > and down with the administration and withdrawal of ATDs, it just stayed > consistently low. > > I guessed from this that I was not facing the life threatening > agranulocytosis and argued my case tearfully with an intern who went and > checked with his boss who agreed with me and put me back on ATDs " for > another go " . Having access to and understanding of my own medical records > has been invaluable to me.The sad thing is, I lost two months to really > horrible hyperthyroidism, whilst I was waiting to see the speciallist. > > This board was SO helpful during that period, Elaine advised me that a low > neutrophil count can in fact be one of the symptoms of Graves' Disease in > the first place. Others advised me that even if my neutrophil count could > be attributed to my use of ATDs, that possibly the dose was just too high > for me and I should try reducing the dose rather than not using ATDs at all > (I think conventional medicene sees this as too risky - I was told that > current research shows that the incidence of agranulocytosis is not dose > related: that is, it doesnt' make any difference how much you take, if you > are going to react like that to the drug, you'll react to a little or to > alot.) > > Anyway - I went back on ATDs and am (one year on) now on a maintainance > dose. My neutrophil count finally came back to normal and stayed there > about four months ago. I am not sure if that is an indication that I am > heading for remission or not. Think it must be a good sign. > > I still have alot of health problems biting at my heels that I feel may be > unrelated to my thyroid problem, but am glad that I stood my ground and > argued. > > In your position I would always go for the blood test if I could get one - > the more information you can have available to you the better I reckon. > > Hope Christmas was grand for you and that all is wellll. > DAWN ROSE > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi , This horrible sore throat seems to be going around the globe, and results in bronchitis for lots of people, seems like. And everyone I know who has had it, has had the flu shot too. So, either it is not related to the flu, or it is one which was not included in the shot...Glad to hear your progress, and that you are OK now. Also, that your blood count was OK. It is scary to have this happen. Yes, our doctors in the U.S. do not want to prescribe antibiotics very easily anymore, either. From the information I have seen, some doctors no longer feel like ear infections in babies, or strep throats for that matter, are that dangerous, even though as Elaine has said, we could get heart problems from this. Take care, Arlene Re: Elaine - help! Hi , It's ARlene here...sorry I couldn't get to you sooner, but we just bought a new computer because the old one was freezing up all the time, and now we are having problems transferring everything, etc. When I first went on PTU, back in May, I got an extremely sore throat around the end of May after being on the medication for 2 weeks. I knew about this problem with the sore throat and ATDs, and didn't get much good advice from my doctor at the time. However, I did want to reassure you that there have been others who had this same thing, and it was, indeed, just a cold. If you want to be sure, is it possible for you to go into the emergency room and insist on a blood test without the doctor's approval, or one of the doctor's in the emergency room? I think it is really OK to ask your doctor, under these circumstances, for an approval for a blood test. Interestingly, my new endocrinologist gave me a blank approval sheet for a blood test, in case I needed one, for a sore throat! Good luck, , and take care. Sorry I haven't been able to follow this whole thing because I have not been online for a while. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi , Jumping in here, with your message to Dawn Rose, because you mention you have now gone hypo. I had done that too, and felt pretty miserable while I very slowly went down on my meds from 300 to 50 (where I started to feel much better). Then I was able to go to 25 where I stayed for around 2 months. Am now off for 7 days, and we shall see. Not sure... Good luck, Arlene PS: The entire time I was going down, I had palpitations, which made me believe I was still hyper, even when I was hypo. When I was at 25, I was so scared to go off completely because of these palpitations. But now that I am off, I don't have them as much - just that occasional thump (not too hard) we have spoken about before. Re: Elaine - help! > > > > Hiya , > > Sorry for the delay in answering - Chrismas crept up on me. > > > > To answer your question about my experience with ATDs and low white blood > > cell counts: > > > > I was put on a high dose of ATDs initially and I had a sore throat within > a > > week... went back to the docs, and they told me to stop taking the tablets > > and gave me a blood test to see if my white blood cells were within range. > > I was very thyrotoxic at this stage (I think it was August/September > 2000) - > > the blood test showed that my neutrophil count was below the normal range > so > > they tried me on the alternative ATD = PTU or to give it the full (and > > mispelt? name) propilthyoracil. > > Again I got a sore throat and the second blood test showed I still had a > low > > blood cell count. They took me off this second lot of ATDs and gave me > > antibiotics for the sore throat. I had to wait about six weeks to see the > > specialist. > > > > This was an awful time for me as I was just VERY hyper and only taking > Beta > > blockers; I had refused RAI and told the doctors that if I really couldn't > > do ATDs, then I would have surgery. I am sure I was already down in the > > books as a " difficult patient " . > > > > When I did finally get to see the endocrinologist, he said surgery was not > > an option as my thyroid gland was very dense and very small, so it would > be > > impossible to find a surgeon who would operate on me as I might bleed to > > death on the table. By this point I just didn't believe half of the stuff > > they said, and I am still not sure how much of what they told me was > > pressure to go forward with the RAI and how much was useful and truthful > > information. I was basically told that I would have to have RAI, that I > had > > no other options. > > > > AT this point I dragged out my old medical records and pointed to the fact > > that my neutrophil count had been low BEFORE I ever was even diagnosed and > > long before I had taken and ATD. Also, my neutrophil count did not go up > > and down with the administration and withdrawal of ATDs, it just stayed > > consistently low. > > > > I guessed from this that I was not facing the life threatening > > agranulocytosis and argued my case tearfully with an intern who went and > > checked with his boss who agreed with me and put me back on ATDs " for > > another go " . Having access to and understanding of my own medical records > > has been invaluable to me.The sad thing is, I lost two months to really > > horrible hyperthyroidism, whilst I was waiting to see the speciallist. > > > > This board was SO helpful during that period, Elaine advised me that a low > > neutrophil count can in fact be one of the symptoms of Graves' Disease in > > the first place. Others advised me that even if my neutrophil count could > > be attributed to my use of ATDs, that possibly the dose was just too high > > for me and I should try reducing the dose rather than not using ATDs at > all > > (I think conventional medicene sees this as too risky - I was told that > > current research shows that the incidence of agranulocytosis is not dose > > related: that is, it doesnt' make any difference how much you take, if you > > are going to react like that to the drug, you'll react to a little or to > > alot.) > > > > Anyway - I went back on ATDs and am (one year on) now on a maintainance > > dose. My neutrophil count finally came back to normal and stayed there > > about four months ago. I am not sure if that is an indication that I am > > heading for remission or not. Think it must be a good sign. > > > > I still have alot of health problems biting at my heels that I feel may be > > unrelated to my thyroid problem, but am glad that I stood my ground and > > argued. > > > > In your position I would always go for the blood test if I could get one - > > the more information you can have available to you the better I reckon. > > > > Hope Christmas was grand for you and that all is wellll. > > DAWN ROSE > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hello Arlene My doctor sent me to a cardiologist before Christmas because she thought my heart shouldn't be doing what it's doing and it's not explained by all this thyroid messing about stuff. I have a slightly abnormal ECG apparently and a murmur. Both of which he's decided to ignore. Oh. Right, then. Ok. He said I should try and take my pulse when my heart is doing it and get some idea of heart rate like that. Only trouble with that is that it doesn't do it for long enough. It kind of hiccups and then stops hiccuping - only time to get fingers to wrist and then nothing to count from. Take fingers away and it might do it again. Or it might not do it again for a while. So I don't know what the hell's going on with it now. But maybe it's not a problem if it can be explained by the hypo anyway. All right then, I'll go with that. Keeping everything positive and crossed that you'll be hunkydorey now. Take care now, Re: Elaine - help! > > > > > > > Hiya , > > > Sorry for the delay in answering - Chrismas crept up on me. > > > > > > To answer your question about my experience with ATDs and low white > blood > > > cell counts: > > > > > > I was put on a high dose of ATDs initially and I had a sore throat > within > > a > > > week... went back to the docs, and they told me to stop taking the > tablets > > > and gave me a blood test to see if my white blood cells were within > range. > > > I was very thyrotoxic at this stage (I think it was August/September > > 2000) - > > > the blood test showed that my neutrophil count was below the normal > range > > so > > > they tried me on the alternative ATD = PTU or to give it the full (and > > > mispelt? name) propilthyoracil. > > > Again I got a sore throat and the second blood test showed I still had a > > low > > > blood cell count. They took me off this second lot of ATDs and gave me > > > antibiotics for the sore throat. I had to wait about six weeks to see > the > > > specialist. > > > > > > This was an awful time for me as I was just VERY hyper and only taking > > Beta > > > blockers; I had refused RAI and told the doctors that if I really > couldn't > > > do ATDs, then I would have surgery. I am sure I was already down in the > > > books as a " difficult patient " . > > > > > > When I did finally get to see the endocrinologist, he said surgery was > not > > > an option as my thyroid gland was very dense and very small, so it would > > be > > > impossible to find a surgeon who would operate on me as I might bleed to > > > death on the table. By this point I just didn't believe half of the > stuff > > > they said, and I am still not sure how much of what they told me was > > > pressure to go forward with the RAI and how much was useful and truthful > > > information. I was basically told that I would have to have RAI, that I > > had > > > no other options. > > > > > > AT this point I dragged out my old medical records and pointed to the > fact > > > that my neutrophil count had been low BEFORE I ever was even diagnosed > and > > > long before I had taken and ATD. Also, my neutrophil count did not go > up > > > and down with the administration and withdrawal of ATDs, it just stayed > > > consistently low. > > > > > > I guessed from this that I was not facing the life threatening > > > agranulocytosis and argued my case tearfully with an intern who went and > > > checked with his boss who agreed with me and put me back on ATDs " for > > > another go " . Having access to and understanding of my own medical > records > > > has been invaluable to me.The sad thing is, I lost two months to really > > > horrible hyperthyroidism, whilst I was waiting to see the speciallist. > > > > > > This board was SO helpful during that period, Elaine advised me that a > low > > > neutrophil count can in fact be one of the symptoms of Graves' Disease > in > > > the first place. Others advised me that even if my neutrophil count > could > > > be attributed to my use of ATDs, that possibly the dose was just too > high > > > for me and I should try reducing the dose rather than not using ATDs at > > all > > > (I think conventional medicene sees this as too risky - I was told that > > > current research shows that the incidence of agranulocytosis is not dose > > > related: that is, it doesnt' make any difference how much you take, if > you > > > are going to react like that to the drug, you'll react to a little or to > > > alot.) > > > > > > Anyway - I went back on ATDs and am (one year on) now on a maintainance > > > dose. My neutrophil count finally came back to normal and stayed there > > > about four months ago. I am not sure if that is an indication that I am > > > heading for remission or not. Think it must be a good sign. > > > > > > I still have alot of health problems biting at my heels that I feel may > be > > > unrelated to my thyroid problem, but am glad that I stood my ground and > > > argued. > > > > > > In your position I would always go for the blood test if I could get > one - > > > the more information you can have available to you the better I reckon. > > > > > > Hope Christmas was grand for you and that all is wellll. > > > DAWN ROSE > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Yes, I have heard of really bad cases where antibiotics have been refused when they obviously should have been given. Case of bolting the stable door after the horse has galloped off really and in the meantime the patient suffers. Again. Ok, won't get on that soap box just now... Take care, Re: Elaine - help! Hi , It's ARlene here...sorry I couldn't get to you sooner, but we just bought a new computer because the old one was freezing up all the time, and now we are having problems transferring everything, etc. When I first went on PTU, back in May, I got an extremely sore throat around the end of May after being on the medication for 2 weeks. I knew about this problem with the sore throat and ATDs, and didn't get much good advice from my doctor at the time. However, I did want to reassure you that there have been others who had this same thing, and it was, indeed, just a cold. If you want to be sure, is it possible for you to go into the emergency room and insist on a blood test without the doctor's approval, or one of the doctor's in the emergency room? I think it is really OK to ask your doctor, under these circumstances, for an approval for a blood test. Interestingly, my new endocrinologist gave me a blank approval sheet for a blood test, in case I needed one, for a sore throat! Good luck, , and take care. Sorry I haven't been able to follow this whole thing because I have not been online for a while. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 I will keep my fingers crossed that everything will be hunkydory for you (loved that old-fashioned phrase!) I think once you get less hypo, your thumping and jumping heart is going to be much better. Until last week, I was still on PTU, though both my doctors said I could go off it a month earlier. The thumping and palpitating and whatever you want to call the heart, concerned me because I thought I was hyper again. I have MUCH LESS heart thumping, now that I am off any medication. I am beginning to believe that I have these problems at either hyper or hypo levels. I am on calcium & magnesium, and this helps, too. Arlene Re: Elaine - help! > > > > > > > > > > Hiya , > > > > Sorry for the delay in answering - Chrismas crept up on me. > > > > > > > > To answer your question about my experience with ATDs and low white > > blood > > > > cell counts: > > > > > > > > I was put on a high dose of ATDs initially and I had a sore throat > > within > > > a > > > > week... went back to the docs, and they told me to stop taking the > > tablets > > > > and gave me a blood test to see if my white blood cells were within > > range. > > > > I was very thyrotoxic at this stage (I think it was August/September > > > 2000) - > > > > the blood test showed that my neutrophil count was below the normal > > range > > > so > > > > they tried me on the alternative ATD = PTU or to give it the full (and > > > > mispelt? name) propilthyoracil. > > > > Again I got a sore throat and the second blood test showed I still had > a > > > low > > > > blood cell count. They took me off this second lot of ATDs and gave > me > > > > antibiotics for the sore throat. I had to wait about six weeks to see > > the > > > > specialist. > > > > > > > > This was an awful time for me as I was just VERY hyper and only taking > > > Beta > > > > blockers; I had refused RAI and told the doctors that if I really > > couldn't > > > > do ATDs, then I would have surgery. I am sure I was already down in > the > > > > books as a " difficult patient " . > > > > > > > > When I did finally get to see the endocrinologist, he said surgery was > > not > > > > an option as my thyroid gland was very dense and very small, so it > would > > > be > > > > impossible to find a surgeon who would operate on me as I might bleed > to > > > > death on the table. By this point I just didn't believe half of the > > stuff > > > > they said, and I am still not sure how much of what they told me was > > > > pressure to go forward with the RAI and how much was useful and > truthful > > > > information. I was basically told that I would have to have RAI, that > I > > > had > > > > no other options. > > > > > > > > AT this point I dragged out my old medical records and pointed to the > > fact > > > > that my neutrophil count had been low BEFORE I ever was even diagnosed > > and > > > > long before I had taken and ATD. Also, my neutrophil count did not go > > up > > > > and down with the administration and withdrawal of ATDs, it just > stayed > > > > consistently low. > > > > > > > > I guessed from this that I was not facing the life threatening > > > > agranulocytosis and argued my case tearfully with an intern who went > and > > > > checked with his boss who agreed with me and put me back on ATDs " for > > > > another go " . Having access to and understanding of my own medical > > records > > > > has been invaluable to me.The sad thing is, I lost two months to > really > > > > horrible hyperthyroidism, whilst I was waiting to see the speciallist. > > > > > > > > This board was SO helpful during that period, Elaine advised me that a > > low > > > > neutrophil count can in fact be one of the symptoms of Graves' Disease > > in > > > > the first place. Others advised me that even if my neutrophil count > > could > > > > be attributed to my use of ATDs, that possibly the dose was just too > > high > > > > for me and I should try reducing the dose rather than not using ATDs > at > > > all > > > > (I think conventional medicene sees this as too risky - I was told > that > > > > current research shows that the incidence of agranulocytosis is not > dose > > > > related: that is, it doesnt' make any difference how much you take, if > > you > > > > are going to react like that to the drug, you'll react to a little or > to > > > > alot.) > > > > > > > > Anyway - I went back on ATDs and am (one year on) now on a > maintainance > > > > dose. My neutrophil count finally came back to normal and stayed > there > > > > about four months ago. I am not sure if that is an indication that I > am > > > > heading for remission or not. Think it must be a good sign. > > > > > > > > I still have alot of health problems biting at my heels that I feel > may > > be > > > > unrelated to my thyroid problem, but am glad that I stood my ground > and > > > > argued. > > > > > > > > In your position I would always go for the blood test if I could get > > one - > > > > the more information you can have available to you the better I > reckon. > > > > > > > > Hope Christmas was grand for you and that all is wellll. > > > > DAWN ROSE > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 That's encouraging. Thank you. I must get to grips with the supplement side of things now really. Re: Elaine - help! > > > > > > > > > > > > > Hiya , > > > > > Sorry for the delay in answering - Chrismas crept up on me. > > > > > > > > > > To answer your question about my experience with ATDs and low white > > > blood > > > > > cell counts: > > > > > > > > > > I was put on a high dose of ATDs initially and I had a sore throat > > > within > > > > a > > > > > week... went back to the docs, and they told me to stop taking the > > > tablets > > > > > and gave me a blood test to see if my white blood cells were within > > > range. > > > > > I was very thyrotoxic at this stage (I think it was August/September > > > > 2000) - > > > > > the blood test showed that my neutrophil count was below the normal > > > range > > > > so > > > > > they tried me on the alternative ATD = PTU or to give it the full > (and > > > > > mispelt? name) propilthyoracil. > > > > > Again I got a sore throat and the second blood test showed I still > had > > a > > > > low > > > > > blood cell count. They took me off this second lot of ATDs and gave > > me > > > > > antibiotics for the sore throat. I had to wait about six weeks to > see > > > the > > > > > specialist. > > > > > > > > > > This was an awful time for me as I was just VERY hyper and only > taking > > > > Beta > > > > > blockers; I had refused RAI and told the doctors that if I really > > > couldn't > > > > > do ATDs, then I would have surgery. I am sure I was already down in > > the > > > > > books as a " difficult patient " . > > > > > > > > > > When I did finally get to see the endocrinologist, he said surgery > was > > > not > > > > > an option as my thyroid gland was very dense and very small, so it > > would > > > > be > > > > > impossible to find a surgeon who would operate on me as I might > bleed > > to > > > > > death on the table. By this point I just didn't believe half of the > > > stuff > > > > > they said, and I am still not sure how much of what they told me was > > > > > pressure to go forward with the RAI and how much was useful and > > truthful > > > > > information. I was basically told that I would have to have RAI, > that > > I > > > > had > > > > > no other options. > > > > > > > > > > AT this point I dragged out my old medical records and pointed to > the > > > fact > > > > > that my neutrophil count had been low BEFORE I ever was even > diagnosed > > > and > > > > > long before I had taken and ATD. Also, my neutrophil count did not > go > > > up > > > > > and down with the administration and withdrawal of ATDs, it just > > stayed > > > > > consistently low. > > > > > > > > > > I guessed from this that I was not facing the life threatening > > > > > agranulocytosis and argued my case tearfully with an intern who went > > and > > > > > checked with his boss who agreed with me and put me back on ATDs > " for > > > > > another go " . Having access to and understanding of my own medical > > > records > > > > > has been invaluable to me.The sad thing is, I lost two months to > > really > > > > > horrible hyperthyroidism, whilst I was waiting to see the > speciallist. > > > > > > > > > > This board was SO helpful during that period, Elaine advised me that > a > > > low > > > > > neutrophil count can in fact be one of the symptoms of Graves' > Disease > > > in > > > > > the first place. Others advised me that even if my neutrophil count > > > could > > > > > be attributed to my use of ATDs, that possibly the dose was just too > > > high > > > > > for me and I should try reducing the dose rather than not using ATDs > > at > > > > all > > > > > (I think conventional medicene sees this as too risky - I was told > > that > > > > > current research shows that the incidence of agranulocytosis is not > > dose > > > > > related: that is, it doesnt' make any difference how much you take, > if > > > you > > > > > are going to react like that to the drug, you'll react to a little > or > > to > > > > > alot.) > > > > > > > > > > Anyway - I went back on ATDs and am (one year on) now on a > > maintainance > > > > > dose. My neutrophil count finally came back to normal and stayed > > there > > > > > about four months ago. I am not sure if that is an indication that > I > > am > > > > > heading for remission or not. Think it must be a good sign. > > > > > > > > > > I still have alot of health problems biting at my heels that I feel > > may > > > be > > > > > unrelated to my thyroid problem, but am glad that I stood my ground > > and > > > > > argued. > > > > > > > > > > In your position I would always go for the blood test if I could get > > > one - > > > > > the more information you can have available to you the better I > > reckon. > > > > > > > > > > Hope Christmas was grand for you and that all is wellll. > > > > > DAWN ROSE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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