Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 geneva248 wrote: > > The free T4 was at the very uppermost end of normal > however. This is normal for those on levothyroxine only as thyroid hormone replacement, which I think you are? > The endo (NP) dropped the synthroid to .1 > and wants to wait for eight weeks to run the autoimmunity panel. > And maybe this is why I'm freezing to death > under several blankets? I only do that when hypo, or suffering an infection..... so I'd be cautious of reducing the synthroid, although the heart symptoms sound worrying. Someone more with it will be along soon to make more useful comment. Take care, Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Hi Laurel - I noticed 2 things - your high TSH and hypO symptoms (regardless of the higher end T4 level) probably means your T3 is too low. The T4 you ARE getting might not be converting to to T3. Low T3 can equal high TSH, and make you feel hypO. It would be a good idea to get your T3 levels tested - Free T3 if you can get it. I'm finding that most people who need replacement hormone need to add T3 replacement instead of increasing the thyroxine alone. I know they want to lower your thyroxine, but I don't think that is going to help matters, with the high TSH and all. And the other thing, the coated tongue caught my attention. That is what I get when my gut is doing badly, and it can be a sign of candida infestation. The antibiotics you were taking probably really upset the intestinal flora, and the 3-1/2 months of diarrhea REALLY points to this. Can you take some live acidophilus, or REAL yogurt -- one that has live cultures listed in the ingredients, instead of cheap fillers. Dannon is just one of the brands of real yogurt. Just an idea or two, Best Wishes, Chris > Hey All you smart and informed people. > > I just need to touch base to see if you all think I'm maybe, finally > on the right track. RAI twice (stupid, stupid, stupid) and then was > given toxic shock last may with a steroid injection. I was thinking > that what I had was the aftereffects of TSS but, as Elaine suggested, > the problem might be partly thyroid. I had three and a half months > of diarrhea from the antibiotics and it may have interferred with the > absorption of nutrients as well as the synthroid. > > Got a new endo because the old one didn't have an office staff who > could refill a script even. The new one is actually a nurse > practioner. Lent her my copy of labs (she didn't believe the TSH of > 69!) so I don't have the ability to look back and see old stuff just > now. I wrote down the latest stuff (sept.) and everything was within > normal limits. The free T4 was at the very uppermost end of normal > however. I have had positive antibodies as well as a positive ANA. > Rhumatologist didn't do a thing about either and the antibodies have > not been repeated for at least a year, more like 18 mos. > > I have been seeing a chiropractor (bless her heart she is the best!) > every week for several months and have just over a month of seeing an > acupuncturist twice a week. He is the greatest! I think that the > interventions, plus the nutritionist (what a lot of supplements!) is > helping the autoimmunity. The endo (NP) dropped the synthroid to .1 > and wants to wait for eight weeks to run the autoimmunity panel. > > Does this make sense? I'm thinking that even though the labs seem > normal there is something nasty going on at a cellular level. And > the inability to absorb anything for all those weeks might have > wrecked havoc. As the accupuncture makes things better on the > cellular level the symptoms become clearer. > Secondly...........I have noticed that a great deal of the pain which > was inflicted on different body parts during the TSS episode now > seems to be mostly muscular. Well a lot of it is. Can this be FMS > again from being hypo? And maybe this is why I'm freezing to death > under several blankets? I'm also exhausted, have palpitations and > ectopics every evening until I go to bed. Also still have the coated > tongue, and the eye burning. But both eyes are less buggy and the > bad one, even though it feels crappy seems to have less lid lag. > > My apologies to all of you who have explained this so often and so > carefully. Its beginning to make some sense but I've been really > dense for some time. > > Finally.........there is a fantastic article in November's Scientific > American (should be online for all of you elswhere than the States by > next month). The article deals with the work being done on dendritic > cells and its possible consequences for diseases of autoimmunity (and > other stuff) > > The lab slip reads " throid AB (ATA,TPO) " and " T4, free direct > dialysis " Is there anything else that I should ask for? I know that > I should know this stuff by now and I apologize for being wimpy but I > really want to get this right this time. > > Thanks to you all, > Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Also, balancing the gut flora can help cut down on antibody production. It's a long explanation, but I can find a link to explain this action better than I can. Will post it tomorrow if you like - Chris > > Hey All you smart and informed people. > > > > I just need to touch base to see if you all think I'm maybe, > finally > > on the right track. RAI twice (stupid, stupid, stupid) and then > was > > given toxic shock last may with a steroid injection. I was > thinking > > that what I had was the aftereffects of TSS but, as Elaine > suggested, > > the problem might be partly thyroid. I had three and a half months > > of diarrhea from the antibiotics and it may have interferred with > the > > absorption of nutrients as well as the synthroid. > > > > Got a new endo because the old one didn't have an office staff who > > could refill a script even. The new one is actually a nurse > > practioner. Lent her my copy of labs (she didn't believe the TSH > of > > 69!) so I don't have the ability to look back and see old stuff > just > > now. I wrote down the latest stuff (sept.) and everything was > within > > normal limits. The free T4 was at the very uppermost end of normal > > however. I have had positive antibodies as well as a positive > ANA. > > Rhumatologist didn't do a thing about either and the antibodies > have > > not been repeated for at least a year, more like 18 mos. > > > > I have been seeing a chiropractor (bless her heart she is the > best!) > > every week for several months and have just over a month of seeing > an > > acupuncturist twice a week. He is the greatest! I think that the > > interventions, plus the nutritionist (what a lot of supplements!) > is > > helping the autoimmunity. The endo (NP) dropped the synthroid > to .1 > > and wants to wait for eight weeks to run the autoimmunity panel. > > > > Does this make sense? I'm thinking that even though the labs seem > > normal there is something nasty going on at a cellular level. And > > the inability to absorb anything for all those weeks might have > > wrecked havoc. As the accupuncture makes things better on the > > cellular level the symptoms become clearer. > > Secondly...........I have noticed that a great deal of the pain > which > > was inflicted on different body parts during the TSS episode now > > seems to be mostly muscular. Well a lot of it is. Can this be FMS > > again from being hypo? And maybe this is why I'm freezing to death > > under several blankets? I'm also exhausted, have palpitations and > > ectopics every evening until I go to bed. Also still have the > coated > > tongue, and the eye burning. But both eyes are less buggy and the > > bad one, even though it feels crappy seems to have less lid lag. > > > > My apologies to all of you who have explained this so often and so > > carefully. Its beginning to make some sense but I've been really > > dense for some time. > > > > Finally.........there is a fantastic article in November's > Scientific > > American (should be online for all of you elswhere than the States > by > > next month). The article deals with the work being done on > dendritic > > cells and its possible consequences for diseases of autoimmunity > (and > > other stuff) > > > > The lab slip reads " throid AB (ATA,TPO) " and " T4, free direct > > dialysis " Is there anything else that I should ask for? I know > that > > I should know this stuff by now and I apologize for being wimpy but > I > > really want to get this right this time. > > > > Thanks to you all, > > Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Dear and Simon, Thanks for your very quick responses! I would be very interested in the gut flora link. I suspect that may be the key to what is going on here. Its been over five months and I don't have the energy to even do the grocery shopping. (not that I'm all that fond of that activity anyway!) I am progressing but so very slowly that I feel I need to think that there is an explanation even if it is complicated. While I'm not young, I'm not that old either! I have been using " Suprema Dophilus " which has seven (yup count 'em seven) kinds of bacteria including acidophilus. Tried the live yogurt during the active diarrhea phase but just couldn't manage to actually eat much of it. Rather like the whey powder. Disgusting stuff! I know that there are hyper and hypo symptoms that can happen together. I'm wondering if that isn't due to extracellular as well as intracellular effects? I do have cytomel from about a year ago. I'm very tempted to try it again and see if it makes a difference. I know that's bad isn't it? But what says makes sense. I'm just not sure I want to wait until December to feel better if that is the answer. On the other hand impatience may be what got me here in the first place. Crap! I'm so tired of being impatient! Thanks again guys, Laurel Re: This sound right? Also, balancing the gut flora can help cut down on antibody production. It's a long explanation, but I can find a link to explain this action better than I can. Will post it tomorrow if you like - Chris > > Hey All you smart and informed people. > > > > I just need to touch base to see if you all think I'm maybe, > finally > > on the right track. RAI twice (stupid, stupid, stupid) and then > was > > given toxic shock last may with a steroid injection. I was > thinking > > that what I had was the aftereffects of TSS but, as Elaine > suggested, > > the problem might be partly thyroid. I had three and a half months > > of diarrhea from the antibiotics and it may have interferred with > the > > absorption of nutrients as well as the synthroid. > > > > Got a new endo because the old one didn't have an office staff who > > could refill a script even. The new one is actually a nurse > > practioner. Lent her my copy of labs (she didn't believe the TSH > of > > 69!) so I don't have the ability to look back and see old stuff > just > > now. I wrote down the latest stuff (sept.) and everything was > within > > normal limits. The free T4 was at the very uppermost end of normal > > however. I have had positive antibodies as well as a positive > ANA. > > Rhumatologist didn't do a thing about either and the antibodies > have > > not been repeated for at least a year, more like 18 mos. > > > > I have been seeing a chiropractor (bless her heart she is the > best!) > > every week for several months and have just over a month of seeing > an > > acupuncturist twice a week. He is the greatest! I think that the > > interventions, plus the nutritionist (what a lot of supplements!) > is > > helping the autoimmunity. The endo (NP) dropped the synthroid > to .1 > > and wants to wait for eight weeks to run the autoimmunity panel. > > > > Does this make sense? I'm thinking that even though the labs seem > > normal there is something nasty going on at a cellular level. And > > the inability to absorb anything for all those weeks might have > > wrecked havoc. As the accupuncture makes things better on the > > cellular level the symptoms become clearer. > > Secondly...........I have noticed that a great deal of the pain > which > > was inflicted on different body parts during the TSS episode now > > seems to be mostly muscular. Well a lot of it is. Can this be FMS > > again from being hypo? And maybe this is why I'm freezing to death > > under several blankets? I'm also exhausted, have palpitations and > > ectopics every evening until I go to bed. Also still have the > coated > > tongue, and the eye burning. But both eyes are less buggy and the > > bad one, even though it feels crappy seems to have less lid lag. > > > > My apologies to all of you who have explained this so often and so > > carefully. Its beginning to make some sense but I've been really > > dense for some time. > > > > Finally.........there is a fantastic article in November's > Scientific > > American (should be online for all of you elswhere than the States > by > > next month). The article deals with the work being done on > dendritic > > cells and its possible consequences for diseases of autoimmunity > (and > > other stuff) > > > > The lab slip reads " throid AB (ATA,TPO) " and " T4, free direct > > dialysis " Is there anything else that I should ask for? I know > that > > I should know this stuff by now and I apologize for being wimpy but > I > > really want to get this right this time. > > > > Thanks to you all, > > Laurel ------------------------------------- The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. Please consult your doctor before changing or trying new treatments. ---------------------------------------- DISCLAIMER Advertisments placed on this yahoo groups list do not have the endorsement of the listowner. I have no input as to what ads are attached to emails. --------------------------------------------------------------------------------\ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Hi Laurel -- Just wanted to mention that what Simon said is right - freezing is a pretty sure sign of hypO, and lowering the meds might not be such a good idea. I'm amazed that you have to wait so long to get some help. This seems to be a trend--just let the patient flounder around until we can get around to helping them? Doctors are really getting cold- hearted these days! This link is to a great explanation of faulty digestion and candida. You could search Google.com for " candida " and " leaky gut syndrome " and get more links. I'm not endorsing the website or anything, but was impressed with the information on this problem. Scroll down to " Introduction. " http://www.sheilas.com/newsletters/candida.html Here is an excerpt: Quote: People may have symptoms that appear totally unrelated to the candida such as irritable bowel syndrome, inflammatory bowel disease, vaginal yeast infections, headaches with sinus involvement, histamine allergic reactions and thrush white tongue, to name a few. Remember, the mouth is the beginning of the GI tract and culinary sugars begin their work immediately on the teeth, gums and tissues through interaction with fungi. Sugar activates candida metabolism and some of its by-products are neurotoxins such as formaldehyde, alcohol and acetlyaldehyde. One's nervous system can become deranged during candida due to specific neurotoxins. Autism is one example of this. Remember that half or more of intestinal tissue is immune tissue and what you do to the walls of your intestines you are doing directly to your 'immune' system. Also, the immune system might respond to candida by-products and food molecules in the bloodstream by secreting histamines with the classic symptoms of allergies and intolerances. End Quote. The problem with some acidophilus products is keeping the " critters " alive. Most brands need to be refrigerated at all times from the manufacturer to the store and on to your own fridge. I use Kyodophilus because it can be stored at room temp until you open the jar. I DO notice a difference when I take it. I didn't trust some of the other brands to be refrigerated at all times. You will know when you're taking it too often...... I wasn't able to take it every day because it seemed to loosen things up too much, if ya know what I mean.......... This link has a good explanation about how just throwing more T4 at a hypothyroid patient can backfire and cause even MORE hypothyroidism: http://www.efn.org/~raypeat/horm.html Then scroll down to: Thyroid - Therapies, Confusion and Fraud Here's an excerpt: Quote: The serum's high ratio of T4 to T3 is a pitifully poor argument to justify the use of thyroxine instead of a product that resembles the proportion of these substances secreted by a healthy thyroid gland, or maintained inside cells. About 30 years ago, when many people still thought of thyroxine as " the thryoid hormone, " someone was making the argument that " the thyroid hormone " must work exclusively as an activator of genes, since most of the organ slices he tested didn't increase their oxygen consumption when it was added. In fact, the addition of thyroxine to brain slices suppressed their respiration by 6% during the experiment. Since most T3 is produced from T4 in the liver, not in the brain, I think that experiment had great significance, despite the ignorant interpretation of the author. >>>>>> An excess of thyroxine, in a tissue that doesn't convert it rapidly to T3, has an antithyroid action. (See Goumaz, et al, 1987.) This happens in many women who are given thyroxine; as their dose is increased, their symptoms get worse. End Quote. I wish I knew more about the intracellular and extracellular subject. That sounds interesting. I'd be careful about the cytomel you have from a year ago. For one thing, check the expiration date. For another, you shouldn't try adding it on your own, especially without some kind of testing for the T3. Elaine has a good explanation about Total T3, and Free T3, and Reverse T3. You might want to study that. It was in a post from yesterday, to I think. Don't just start taking T3 without knowing what is going on with your levels. I understand it is tricky getting just the right dose, and the timing of those doses. Jody, , and Elaine (and maybe others as well) know a lot about this. Why do you have to wait until December? Can't you find an internest or GP who will run the proper testing, and then you can go from there? I'm finding that the hyper and hypo symptoms that go together are usually due to either a high T3 and low T4, or high T4 and low T3. I know how you feel about the grocery shopping. The rising prices are enough to make me tired--sick and tired! Best Wishes, Chris ------------- Diagnosed with Graves' May 1979 On tapazole since May 1979 Age 53 - menopause at 46 Currently on 7.5 mg/da Tap, 30 mg/da inderal Latest testing: 8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0) 9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1) 9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1) > > > Hey All you smart and informed people. > > > > > > I just need to touch base to see if you all think I'm maybe, > > finally > > > on the right track. RAI twice (stupid, stupid, stupid) and then > > was > > > given toxic shock last may with a steroid injection. I was > > thinking > > > that what I had was the aftereffects of TSS but, as Elaine > > suggested, > > > the problem might be partly thyroid. I had three and a half > months > > > of diarrhea from the antibiotics and it may have interferred with > > the > > > absorption of nutrients as well as the synthroid. > > > > > > Got a new endo because the old one didn't have an office staff > who > > > could refill a script even. The new one is actually a nurse > > > practioner. Lent her my copy of labs (she didn't believe the TSH > > of > > > 69!) so I don't have the ability to look back and see old stuff > > just > > > now. I wrote down the latest stuff (sept.) and everything was > > within > > > normal limits. The free T4 was at the very uppermost end of > normal > > > however. I have had positive antibodies as well as a positive > > ANA. > > > Rhumatologist didn't do a thing about either and the antibodies > > have > > > not been repeated for at least a year, more like 18 mos. > > > > > > I have been seeing a chiropractor (bless her heart she is the > > best!) > > > every week for several months and have just over a month of > seeing > > an > > > acupuncturist twice a week. He is the greatest! I think that the > > > interventions, plus the nutritionist (what a lot of supplements!) > > is > > > helping the autoimmunity. The endo (NP) dropped the synthroid > > to .1 > > > and wants to wait for eight weeks to run the autoimmunity panel. > > > > > > Does this make sense? I'm thinking that even though the labs seem > > > normal there is something nasty going on at a cellular level. > And > > > the inability to absorb anything for all those weeks might have > > > wrecked havoc. As the accupuncture makes things better on the > > > cellular level the symptoms become clearer. > > > Secondly...........I have noticed that a great deal of the pain > > which > > > was inflicted on different body parts during the TSS episode now > > > seems to be mostly muscular. Well a lot of it is. Can this be > FMS > > > again from being hypo? And maybe this is why I'm freezing to > death > > > under several blankets? I'm also exhausted, have palpitations > and > > > ectopics every evening until I go to bed. Also still have the > > coated > > > tongue, and the eye burning. But both eyes are less buggy and > the > > > bad one, even though it feels crappy seems to have less lid lag. > > > > > > My apologies to all of you who have explained this so often and > so > > > carefully. Its beginning to make some sense but I've been really > > > dense for some time. > > > > > > Finally.........there is a fantastic article in November's > > Scientific > > > American (should be online for all of you elswhere than the > States > > by > > > next month). The article deals with the work being done on > > dendritic > > > cells and its possible consequences for diseases of autoimmunity > > (and > > > other stuff) > > > > > > The lab slip reads " throid AB (ATA,TPO) " and " T4, free direct > > > dialysis " Is there anything else that I should ask for? I know > > that > > > I should know this stuff by now and I apologize for being wimpy > but > > I > > > really want to get this right this time. > > > > > > Thanks to you all, > > > Laurel > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------- ------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 I printed out hard copies of both articles. I need to take the time to read them carefully. It looks like the latter may be very helpful. Thanks so much. The intercellular vs. extracellular is just a guess on my part. I don't have anything to back it up. It just seems that stuff at a higher concentration that one would expect outside the areas in which one might expect it, would wreck havoc. So if we have levels that are just floating around, they might be deleterious as well as indicate a problem. I'm thinking, for example, how an elevated serum potassium can be deadly. I guess I want a bottom up approach to all this because that is how I tend to think. So what is the difference between how an electrolyte works and how a hormone works? Well, heck a whole lot of difference! But since stuff like an elevated serum cholesterol can really mess a person up, I can't help wondering what a large number T4 might do besides indicate lack of conversion. Then the brain fog takes over and I lose it. It would be so easy to just go upstairs and eat one of those cytomel and see what happens. But I won't. Really. (Crap!) I don't know why the delay. I think it was because the endo was new and she needed time to review the records. Why it takes eight weeks? Anybody's guess. Thanks again for your help. I'll let you know if I find anything on the pure speculation. Laurel Re: This sound right? Hi Laurel -- Just wanted to mention that what Simon said is right - freezing is a pretty sure sign of hypO, and lowering the meds might not be such a good idea. I'm amazed that you have to wait so long to get some help. This seems to be a trend--just let the patient flounder around until we can get around to helping them? Doctors are really getting cold- hearted these days! This link is to a great explanation of faulty digestion and candida. You could search Google.com for " candida " and " leaky gut syndrome " and get more links. I'm not endorsing the website or anything, but was impressed with the information on this problem. Scroll down to " Introduction. " http://www.sheilas.com/newsletters/candida.html Here is an excerpt: Quote: People may have symptoms that appear totally unrelated to the candida such as irritable bowel syndrome, inflammatory bowel disease, vaginal yeast infections, headaches with sinus involvement, histamine allergic reactions and thrush white tongue, to name a few. Remember, the mouth is the beginning of the GI tract and culinary sugars begin their work immediately on the teeth, gums and tissues through interaction with fungi. Sugar activates candida metabolism and some of its by-products are neurotoxins such as formaldehyde, alcohol and acetlyaldehyde. One's nervous system can become deranged during candida due to specific neurotoxins. Autism is one example of this. Remember that half or more of intestinal tissue is immune tissue and what you do to the walls of your intestines you are doing directly to your 'immune' system. Also, the immune system might respond to candida by-products and food molecules in the bloodstream by secreting histamines with the classic symptoms of allergies and intolerances. End Quote. The problem with some acidophilus products is keeping the " critters " alive. Most brands need to be refrigerated at all times from the manufacturer to the store and on to your own fridge. I use Kyodophilus because it can be stored at room temp until you open the jar. I DO notice a difference when I take it. I didn't trust some of the other brands to be refrigerated at all times. You will know when you're taking it too often...... I wasn't able to take it every day because it seemed to loosen things up too much, if ya know what I mean.......... This link has a good explanation about how just throwing more T4 at a hypothyroid patient can backfire and cause even MORE hypothyroidism: http://www.efn.org/~raypeat/horm.html Then scroll down to: Thyroid - Therapies, Confusion and Fraud Here's an excerpt: Quote: The serum's high ratio of T4 to T3 is a pitifully poor argument to justify the use of thyroxine instead of a product that resembles the proportion of these substances secreted by a healthy thyroid gland, or maintained inside cells. About 30 years ago, when many people still thought of thyroxine as " the thryoid hormone, " someone was making the argument that " the thyroid hormone " must work exclusively as an activator of genes, since most of the organ slices he tested didn't increase their oxygen consumption when it was added. In fact, the addition of thyroxine to brain slices suppressed their respiration by 6% during the experiment. Since most T3 is produced from T4 in the liver, not in the brain, I think that experiment had great significance, despite the ignorant interpretation of the author. >>>>>> An excess of thyroxine, in a tissue that doesn't convert it rapidly to T3, has an antithyroid action. (See Goumaz, et al, 1987.) This happens in many women who are given thyroxine; as their dose is increased, their symptoms get worse. End Quote. I wish I knew more about the intracellular and extracellular subject. That sounds interesting. I'd be careful about the cytomel you have from a year ago. For one thing, check the expiration date. For another, you shouldn't try adding it on your own, especially without some kind of testing for the T3. Elaine has a good explanation about Total T3, and Free T3, and Reverse T3. You might want to study that. It was in a post from yesterday, to I think. Don't just start taking T3 without knowing what is going on with your levels. I understand it is tricky getting just the right dose, and the timing of those doses. Jody, , and Elaine (and maybe others as well) know a lot about this. Why do you have to wait until December? Can't you find an internest or GP who will run the proper testing, and then you can go from there? I'm finding that the hyper and hypo symptoms that go together are usually due to either a high T3 and low T4, or high T4 and low T3. I know how you feel about the grocery shopping. The rising prices are enough to make me tired--sick and tired! Best Wishes, Chris ------------- Diagnosed with Graves' May 1979 On tapazole since May 1979 Age 53 - menopause at 46 Currently on 7.5 mg/da Tap, 30 mg/da inderal Latest testing: 8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0) 9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1) 9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1) > > > Hey All you smart and informed people. > > > > > > I just need to touch base to see if you all think I'm maybe, > > finally > > > on the right track. RAI twice (stupid, stupid, stupid) and then > > was > > > given toxic shock last may with a steroid injection. I was > > thinking > > > that what I had was the aftereffects of TSS but, as Elaine > > suggested, > > > the problem might be partly thyroid. I had three and a half > months > > > of diarrhea from the antibiotics and it may have interferred with > > the > > > absorption of nutrients as well as the synthroid. > > > > > > Got a new endo because the old one didn't have an office staff > who > > > could refill a script even. The new one is actually a nurse > > > practioner. Lent her my copy of labs (she didn't believe the TSH > > of > > > 69!) so I don't have the ability to look back and see old stuff > > just > > > now. I wrote down the latest stuff (sept.) and everything was > > within > > > normal limits. The free T4 was at the very uppermost end of > normal > > > however. I have had positive antibodies as well as a positive > > ANA. > > > Rhumatologist didn't do a thing about either and the antibodies > > have > > > not been repeated for at least a year, more like 18 mos. > > > > > > I have been seeing a chiropractor (bless her heart she is the > > best!) > > > every week for several months and have just over a month of > seeing > > an > > > acupuncturist twice a week. He is the greatest! I think that the > > > interventions, plus the nutritionist (what a lot of supplements!) > > is > > > helping the autoimmunity. The endo (NP) dropped the synthroid > > to .1 > > > and wants to wait for eight weeks to run the autoimmunity panel. > > > > > > Does this make sense? I'm thinking that even though the labs seem > > > normal there is something nasty going on at a cellular level. > And > > > the inability to absorb anything for all those weeks might have > > > wrecked havoc. As the accupuncture makes things better on the > > > cellular level the symptoms become clearer. > > > Secondly...........I have noticed that a great deal of the pain > > which > > > was inflicted on different body parts during the TSS episode now > > > seems to be mostly muscular. Well a lot of it is. Can this be > FMS > > > again from being hypo? And maybe this is why I'm freezing to > death > > > under several blankets? I'm also exhausted, have palpitations > and > > > ectopics every evening until I go to bed. Also still have the > > coated > > > tongue, and the eye burning. But both eyes are less buggy and > the > > > bad one, even though it feels crappy seems to have less lid lag. > > > > > > My apologies to all of you who have explained this so often and > so > > > carefully. Its beginning to make some sense but I've been really > > > dense for some time. > > > > > > Finally.........there is a fantastic article in November's > > Scientific > > > American (should be online for all of you elswhere than the > States > > by > > > next month). The article deals with the work being done on > > dendritic > > > cells and its possible consequences for diseases of autoimmunity > > (and > > > other stuff) > > > > > > The lab slip reads " throid AB (ATA,TPO) " and " T4, free direct > > > dialysis " Is there anything else that I should ask for? I know > > that > > > I should know this stuff by now and I apologize for being wimpy > but > > I > > > really want to get this right this time. > > > > > > Thanks to you all, > > > Laurel > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------- ------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Hi Laurel, I hope you know the T3 meds have a very short shelf life. I even read where some are told to keep them in the frig, and DRY. I did have a white tongue problem, and guess it might help if I tell you the story. As I became more and more hypo, my tongue got white..them really white, with long white seaweed looking stuff...then it got a huge red crack down the middle...then it started burning 24 / 7 , like the whole thing was burnt or had been dipped in acid. Dentist said it was not thrush, but caused by dry mouth. Hummm ? Dry mouth is caused by hypo. I learned that burning tongue syndrome is caused by medications and mostly anxiety. Hummm? Hypo is anxiety for me. Hypo for me also causes increased BP, which makes me more anxious. Now we move straight to the end of the story. Started thyroid replacement hormones and BP meds the same day. At once...the burning was reduced by 75%. The BP meds immediately reduced the high anxiety. Hummm? Over time, as the replacement hormones worked the white tongue went away. My mouth was so dry from the hypo, I didn't notice right at first, but everyone said I talked funny. As it got worse I could hear it too. Sounded a bit like a speech impediment. The fix for dry mouth is, supposedly, drinking more water all the time. The dry mouth causes the tongue to not slough off as it normally does, thus the white color, and then the really weird seaweed looking white color. Sounds to me, like you ought to hop on down there Monday and get that FT3 test. No reason to let EVERYTHING get worse. -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Laurel, I forgot to mention. Dry mouth causes gum problems. Gum problems cause bone loss and then tooth loss. Go get that FT3 test. -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Pam, Thanks. The dry mouth thing has been going on for years. The tongue coating was initially diagnosed as thrush but did not respond to either the swish stuff or to the addition of acidophilus. I began to think that it is the typical strawberry tongue that is reported with toxic shock. My tongue has now shed completely four times and continues to have this yukky greyish stuff that can be scraped off. (sorry, its really that gross!) My adorable acupuncturist says that its " an excess of heat. " I suppose that might be hyperthyroid but then there are those hypo symptoms too! Gosh I wish this were easier to figure out. I know that the last T3 was " within normal limits " and the FT4 was at the upper limits of normal. I just don't know what goes with what and what it all means. If I had to guess I'd bet that TSS and, especially DIC really messes with cellular metabolism and then the addition of very toxic antibiotics, designed to screw up bacterial cellular function, has to have a very serious effect on human cells. But nobody in the medical community seems to have a clue, much less care, what those effects are. It always comes down to this: If you don't die they don't care. I'll call on Monday and ask if I can have my lab work done early. If the results are basically the same do you think that trying T3 would make a difference? My third endo (the one with the terrible office staff) was very annoyed that I was getting information from the internet (yup you guys!) and very reluctantly gave me the cytomel. I could tell he didn't believe it and took me off it at the first chance he had, with a great deal of annoyance in his manner. I really appreciate your help! Laurel Re: This sound right? Laurel, I forgot to mention. Dry mouth causes gum problems. Gum problems cause bone loss and then tooth loss. Go get that FT3 test. -Pam L- ------------------------------------- The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. Please consult your doctor before changing or trying new treatments. ---------------------------------------- DISCLAIMER Advertisments placed on this yahoo groups list do not have the endorsement of the listowner. I have no input as to what ads are attached to emails. --------------------------------------------------------------------------------\ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Pam! I just read this! Read and answered the other first. My email program sorts everything backwards! What you describe, minus the whiteness, cause mine scrapes off grey to black (I swear! totally gross!) is exactly what is going on. So why, in the name of all that is holy, has nobody in the medical community been able to figure it out? Are they really that dense? So hypo explains a whole lot. The blood work will not support that but there it is. Listen to the patient not the lab. Its very possible that the last four months have been what Jody calls hypo hell. The only thing that keeps me from feeling like a total idiot is that nobody in the army of doctors I have been seeing could make that simple connection. Thanks so much. Laurel Re: Re: This sound right? Hi Laurel, I hope you know the T3 meds have a very short shelf life. I even read where some are told to keep them in the frig, and DRY. I did have a white tongue problem, and guess it might help if I tell you the story. As I became more and more hypo, my tongue got white..them really white, with long white seaweed looking stuff...then it got a huge red crack down the middle...then it started burning 24 / 7 , like the whole thing was burnt or had been dipped in acid. Dentist said it was not thrush, but caused by dry mouth. Hummm ? Dry mouth is caused by hypo. I learned that burning tongue syndrome is caused by medications and mostly anxiety. Hummm? Hypo is anxiety for me. Hypo for me also causes increased BP, which makes me more anxious. Now we move straight to the end of the story. Started thyroid replacement hormones and BP meds the same day. At once...the burning was reduced by 75%. The BP meds immediately reduced the high anxiety. Hummm? Over time, as the replacement hormones worked the white tongue went away. My mouth was so dry from the hypo, I didn't notice right at first, but everyone said I talked funny. As it got worse I could hear it too. Sounded a bit like a speech impediment. The fix for dry mouth is, supposedly, drinking more water all the time. The dry mouth causes the tongue to not slough off as it normally does, thus the white color, and then the really weird seaweed looking white color. Sounds to me, like you ought to hop on down there Monday and get that FT3 test. No reason to let EVERYTHING get worse. -Pam L- ------------------------------------- The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. Please consult your doctor before changing or trying new treatments. ---------------------------------------- DISCLAIMER Advertisments placed on this yahoo groups list do not have the endorsement of the listowner. I have no input as to what ads are attached to emails. --------------------------------------------------------------------------------\ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 I can't believe you said that ! *** " within normal limits " *** LOL :-) You can't gross me out with dry tongue stuff. Gray ...yep, saw that .Yes, it was really UCKY ! It was that last month when it burned so bad , 'Ensure' and 'Slim Fast' were the only things I could eat, that got me down. Don't wait that long. It is miserable. And it was all swollen up. When people could no longer understand what I was saying, I was lowered to telling everyone I saw my tongue was burning and that is why I couldn't talk. Dang...bad enough they thought I was nuts...now they know. Seems no one has ever heard of such a thing. You said: The dry mouth thing has been going on for years By any chance does it match up with being hypo ? The main thing I was worried about was you having one of those moments, which we all have at times, and trying the Cytomel. I think you said it was a year old ??? If so, with the short shelf life, there is no telling what it has turned into. As soon as you have new labs, and the right ones ( FT3- FT4- TSH ), I know the experienced people here, that use the T3 will be able to help you. I am better with the anti thyroid drugs, since I spent so much time on them. But once you get hooked on this thyroid stuff, it turns out I have read and absorbed just enough about hypo meds, to be 'dangerous'. :-) My name is Pam, and I am a thyroid junkie . -Pam L- 3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 YES ! The dentist told me I was lucky it was white and not BLACK ! He said when it gets THAT dry, you can get a different bacteria than the white one. The cure is to fix the dry mouth and the white or black goes away. So if yours was gray...then mine turning gray must have been when that next one was just starting. Because it was right then that I went on the two new meds. Now as for the medical community. I saw so many on this one, that now as I tell them how I cured this, the dentist and the doctors seem to believe me, but since they do not consult, they have only people like me telling them. And hopefully they remember the next time a crazy woman , talking with a lisp, complains about burning tongue, dry mouth, and HYPO ! -Pam L - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Hi all - I just got in and can't catch up tonite - will try tomorrow. Was researching this tongue thing and none of the info gives anything as to how to clear it up. This is obviously a mystery to the medical profession also. I'm giving you some links I found at USC website. WARNING!!!! DING DING DING!!! These are TOTALLY GROSS pictures, so be careful. But at least you can see some examples of " hairy tongue " and " geographic tongue " - make the mouth thrush I got a while back look like a walk in the park. Will search tomorrow for any alternative ideas on treatment, as it appears that the allopathic treatment is the doc shrugging his shoulders and saying that it will go away some day........ sheesh! Also, it can be allergies.... And another thing to keep in mind as I found it to be true: When hypO and your body temp is below normal, it allows a better environment for the bad " critters " - where if your temp is 98.6 degrees F, then it is too hot for some of the bad guys. A natural defense. I had more trouble getting my chronic leg ulcer to heal over when I was hypO and my usual body temp was 96 or so. As I got my levels back up, it finally cleared up. Just an idea. Anyway - Well, here goes! Pics of tongue problems: http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_07.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_04.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_01.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_03.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_02.html What's for dinner? Chris --------- > YES ! > > The dentist told me I was lucky it was white and not BLACK ! > > He said when it gets THAT dry, you can get a different bacteria than the > white one. The cure is to fix the dry mouth and the white or black goes > away. > > So if yours was gray...then mine turning gray must have been when that next > one was just starting. Because it was right then that I went on the two new > meds. > > Now as for the medical community. I saw so many on this one, that now as I > tell them how I cured this, the dentist and the doctors seem to believe me, > but since they do not consult, they have only people like me telling them. > And hopefully they remember the next time a crazy woman , talking with a > lisp, complains about burning tongue, dry mouth, and HYPO ! > > -Pam L - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Laurie, before dry mouth will cause gum problems, it will cause many, many caries (cavities, decay), People with dry mouth can have uncontrollable cavities. Which does bring me to another point, a few posts back, someone had mentioned mercury poisoning from dental fillings, where I think the jury is still out on that, and wouldn't go and get all my fillings changed right now , Future fillings are done in the white composite because it has only been in the last 10 years that there has even been a alternative to amalgam fillings . Also before I would change fillings, If I was chemically sensitive, I would look under my sink to see what chemicals I clean with every day. I use a fabulous product called Botanical Gold that replaces every product, you can even brush your teeth with it, do your laundry, clean your toilet, wash your hair. If any of you want to find this product, let me know and I will give you the web site, I don't want to push a product, But all of us, especially with autoimmune disorders need to really look at the chemicals we touch every day. Jen Re: This sound right? Laurel, I forgot to mention. Dry mouth causes gum problems. Gum problems cause bone loss and then tooth loss. Go get that FT3 test. -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Laurie, before dry mouth will cause gum problems, it will cause many, many caries (cavities, decay), People with dry mouth can have uncontrollable cavities. Which does bring me to another point, a few posts back, someone had mentioned mercury poisoning from dental fillings, where I think the jury is still out on that, and wouldn't go and get all my fillings changed right now , Future fillings are done in the white composite because it has only been in the last 10 years that there has even been a alternative to amalgam fillings . Also before I would change fillings, If I was chemically sensitive, I would look under my sink to see what chemicals I clean with every day. I use a fabulous product called Botanical Gold that replaces every product, you can even brush your teeth with it, do your laundry, clean your toilet, wash your hair. If any of you want to find this product, let me know and I will give you the web site, I don't want to push a product, But all of us, especially with autoimmune disorders need to really look at the chemicals we touch every day. Jen Re: This sound right? Laurel, I forgot to mention. Dry mouth causes gum problems. Gum problems cause bone loss and then tooth loss. Go get that FT3 test. -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Laurie, before dry mouth will cause gum problems, it will cause many, many caries (cavities, decay), People with dry mouth can have uncontrollable cavities. Which does bring me to another point, a few posts back, someone had mentioned mercury poisoning from dental fillings, where I think the jury is still out on that, and wouldn't go and get all my fillings changed right now , Future fillings are done in the white composite because it has only been in the last 10 years that there has even been a alternative to amalgam fillings . Also before I would change fillings, If I was chemically sensitive, I would look under my sink to see what chemicals I clean with every day. I use a fabulous product called Botanical Gold that replaces every product, you can even brush your teeth with it, do your laundry, clean your toilet, wash your hair. If any of you want to find this product, let me know and I will give you the web site, I don't want to push a product, But all of us, especially with autoimmune disorders need to really look at the chemicals we touch every day. Jen Re: This sound right? Laurel, I forgot to mention. Dry mouth causes gum problems. Gum problems cause bone loss and then tooth loss. Go get that FT3 test. -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hey Ok. In spite of the warning I was sitting in front of the computer with my detox tea and the whole grain bread with almond butter (because peanut butter is now forbidden because of the possible mold stuff in it). I'm still drinking the tea. Mine looks like geographic but with the greyish furry stuff around the periphery. What you include makes perfect sense. I had been running nightly low grade fevers and repeating them sometimes in the morning (99-100) I'm going to guess (and a guess it is) this may be tissue inflammation from the destruction first by the staph and then by the antibiotics. Of course when I don't have the fever I run 97 or less, which is probably hypo, because I can't absorb the replacement hormone. The good bugs are not just depleted. They were most likely as gone as a human can have. (Vancomycin is horrid no matter how enamored the docs are!) Add the diarrhea which went on forever and still returns once in a while, and the whole system is a mess. Of course they shrug but my docs don't ever get to the part about it going away some day. They just look nervous and ask if I want Prozac or Paxil or something. So, if I have this right, getting over this involves correcting the hypo which is going to be difficult because of the autoimmune problem and the fact that eight weeks of IV antibiotics have destroyed essential parts of my intestines. So I'm not going to be able to tell if the pain that keeps me from walking very far is due to the FMS from hypo or if its from the damage that was inflicted with an infected injection. And, pardon me if I sound like a radical, but all this is a result of years of misdiagnosis and the fact that I believed a doctor (in an area with a high incidence of thyroid problems) when he told me (here it comes again, wait for it!) I'd die without RAI. TWICE. What I want is a life that doesn't revolve around Graves or TSS! Now that I think about it isn't that what all of us on this list want? Thanks really for the links. Its the only explanation I've gotten except of course, for the " excessive body heat " from my acupuncturist. Oh and next time I'll believe you when you start ringing! Laurel Re: This sound right? Hi all - I just got in and can't catch up tonite - will try tomorrow. Was researching this tongue thing and none of the info gives anything as to how to clear it up. This is obviously a mystery to the medical profession also. I'm giving you some links I found at USC website. WARNING!!!! DING DING DING!!! These are TOTALLY GROSS pictures, so be careful. But at least you can see some examples of " hairy tongue " and " geographic tongue " - make the mouth thrush I got a while back look like a walk in the park. Will search tomorrow for any alternative ideas on treatment, as it appears that the allopathic treatment is the doc shrugging his shoulders and saying that it will go away some day........ sheesh! Also, it can be allergies.... And another thing to keep in mind as I found it to be true: When hypO and your body temp is below normal, it allows a better environment for the bad " critters " - where if your temp is 98.6 degrees F, then it is too hot for some of the bad guys. A natural defense. I had more trouble getting my chronic leg ulcer to heal over when I was hypO and my usual body temp was 96 or so. As I got my levels back up, it finally cleared up. Just an idea. Anyway - Well, here goes! Pics of tongue problems: http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_07.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_04.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_01.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_03.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_02.html What's for dinner? Chris --------- > YES ! > > The dentist told me I was lucky it was white and not BLACK ! > > He said when it gets THAT dry, you can get a different bacteria than the > white one. The cure is to fix the dry mouth and the white or black goes > away. > > So if yours was gray...then mine turning gray must have been when that next > one was just starting. Because it was right then that I went on the two new > meds. > > Now as for the medical community. I saw so many on this one, that now as I > tell them how I cured this, the dentist and the doctors seem to believe me, > but since they do not consult, they have only people like me telling them. > And hopefully they remember the next time a crazy woman , talking with a > lisp, complains about burning tongue, dry mouth, and HYPO ! > > -Pam L - ------------------------------------- The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. Please consult your doctor before changing or trying new treatments. ---------------------------------------- DISCLAIMER Advertisments placed on this yahoo groups list do not have the endorsement of the listowner. I have no input as to what ads are attached to emails. --------------------------------------------------------------------------------\ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hey Ok. In spite of the warning I was sitting in front of the computer with my detox tea and the whole grain bread with almond butter (because peanut butter is now forbidden because of the possible mold stuff in it). I'm still drinking the tea. Mine looks like geographic but with the greyish furry stuff around the periphery. What you include makes perfect sense. I had been running nightly low grade fevers and repeating them sometimes in the morning (99-100) I'm going to guess (and a guess it is) this may be tissue inflammation from the destruction first by the staph and then by the antibiotics. Of course when I don't have the fever I run 97 or less, which is probably hypo, because I can't absorb the replacement hormone. The good bugs are not just depleted. They were most likely as gone as a human can have. (Vancomycin is horrid no matter how enamored the docs are!) Add the diarrhea which went on forever and still returns once in a while, and the whole system is a mess. Of course they shrug but my docs don't ever get to the part about it going away some day. They just look nervous and ask if I want Prozac or Paxil or something. So, if I have this right, getting over this involves correcting the hypo which is going to be difficult because of the autoimmune problem and the fact that eight weeks of IV antibiotics have destroyed essential parts of my intestines. So I'm not going to be able to tell if the pain that keeps me from walking very far is due to the FMS from hypo or if its from the damage that was inflicted with an infected injection. And, pardon me if I sound like a radical, but all this is a result of years of misdiagnosis and the fact that I believed a doctor (in an area with a high incidence of thyroid problems) when he told me (here it comes again, wait for it!) I'd die without RAI. TWICE. What I want is a life that doesn't revolve around Graves or TSS! Now that I think about it isn't that what all of us on this list want? Thanks really for the links. Its the only explanation I've gotten except of course, for the " excessive body heat " from my acupuncturist. Oh and next time I'll believe you when you start ringing! Laurel Re: This sound right? Hi all - I just got in and can't catch up tonite - will try tomorrow. Was researching this tongue thing and none of the info gives anything as to how to clear it up. This is obviously a mystery to the medical profession also. I'm giving you some links I found at USC website. WARNING!!!! DING DING DING!!! These are TOTALLY GROSS pictures, so be careful. But at least you can see some examples of " hairy tongue " and " geographic tongue " - make the mouth thrush I got a while back look like a walk in the park. Will search tomorrow for any alternative ideas on treatment, as it appears that the allopathic treatment is the doc shrugging his shoulders and saying that it will go away some day........ sheesh! Also, it can be allergies.... And another thing to keep in mind as I found it to be true: When hypO and your body temp is below normal, it allows a better environment for the bad " critters " - where if your temp is 98.6 degrees F, then it is too hot for some of the bad guys. A natural defense. I had more trouble getting my chronic leg ulcer to heal over when I was hypO and my usual body temp was 96 or so. As I got my levels back up, it finally cleared up. Just an idea. Anyway - Well, here goes! Pics of tongue problems: http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_07.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_04.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_01.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_03.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_02.html What's for dinner? Chris --------- > YES ! > > The dentist told me I was lucky it was white and not BLACK ! > > He said when it gets THAT dry, you can get a different bacteria than the > white one. The cure is to fix the dry mouth and the white or black goes > away. > > So if yours was gray...then mine turning gray must have been when that next > one was just starting. Because it was right then that I went on the two new > meds. > > Now as for the medical community. I saw so many on this one, that now as I > tell them how I cured this, the dentist and the doctors seem to believe me, > but since they do not consult, they have only people like me telling them. > And hopefully they remember the next time a crazy woman , talking with a > lisp, complains about burning tongue, dry mouth, and HYPO ! > > -Pam L - ------------------------------------- The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. Please consult your doctor before changing or trying new treatments. ---------------------------------------- DISCLAIMER Advertisments placed on this yahoo groups list do not have the endorsement of the listowner. I have no input as to what ads are attached to emails. --------------------------------------------------------------------------------\ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hey Ok. In spite of the warning I was sitting in front of the computer with my detox tea and the whole grain bread with almond butter (because peanut butter is now forbidden because of the possible mold stuff in it). I'm still drinking the tea. Mine looks like geographic but with the greyish furry stuff around the periphery. What you include makes perfect sense. I had been running nightly low grade fevers and repeating them sometimes in the morning (99-100) I'm going to guess (and a guess it is) this may be tissue inflammation from the destruction first by the staph and then by the antibiotics. Of course when I don't have the fever I run 97 or less, which is probably hypo, because I can't absorb the replacement hormone. The good bugs are not just depleted. They were most likely as gone as a human can have. (Vancomycin is horrid no matter how enamored the docs are!) Add the diarrhea which went on forever and still returns once in a while, and the whole system is a mess. Of course they shrug but my docs don't ever get to the part about it going away some day. They just look nervous and ask if I want Prozac or Paxil or something. So, if I have this right, getting over this involves correcting the hypo which is going to be difficult because of the autoimmune problem and the fact that eight weeks of IV antibiotics have destroyed essential parts of my intestines. So I'm not going to be able to tell if the pain that keeps me from walking very far is due to the FMS from hypo or if its from the damage that was inflicted with an infected injection. And, pardon me if I sound like a radical, but all this is a result of years of misdiagnosis and the fact that I believed a doctor (in an area with a high incidence of thyroid problems) when he told me (here it comes again, wait for it!) I'd die without RAI. TWICE. What I want is a life that doesn't revolve around Graves or TSS! Now that I think about it isn't that what all of us on this list want? Thanks really for the links. Its the only explanation I've gotten except of course, for the " excessive body heat " from my acupuncturist. Oh and next time I'll believe you when you start ringing! Laurel Re: This sound right? Hi all - I just got in and can't catch up tonite - will try tomorrow. Was researching this tongue thing and none of the info gives anything as to how to clear it up. This is obviously a mystery to the medical profession also. I'm giving you some links I found at USC website. WARNING!!!! DING DING DING!!! These are TOTALLY GROSS pictures, so be careful. But at least you can see some examples of " hairy tongue " and " geographic tongue " - make the mouth thrush I got a while back look like a walk in the park. Will search tomorrow for any alternative ideas on treatment, as it appears that the allopathic treatment is the doc shrugging his shoulders and saying that it will go away some day........ sheesh! Also, it can be allergies.... And another thing to keep in mind as I found it to be true: When hypO and your body temp is below normal, it allows a better environment for the bad " critters " - where if your temp is 98.6 degrees F, then it is too hot for some of the bad guys. A natural defense. I had more trouble getting my chronic leg ulcer to heal over when I was hypO and my usual body temp was 96 or so. As I got my levels back up, it finally cleared up. Just an idea. Anyway - Well, here goes! Pics of tongue problems: http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_07.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_04.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_01.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_03.html http://www.usc.edu/hsc/dental/PTHL501/KL/c_kl_02.html What's for dinner? Chris --------- > YES ! > > The dentist told me I was lucky it was white and not BLACK ! > > He said when it gets THAT dry, you can get a different bacteria than the > white one. The cure is to fix the dry mouth and the white or black goes > away. > > So if yours was gray...then mine turning gray must have been when that next > one was just starting. Because it was right then that I went on the two new > meds. > > Now as for the medical community. I saw so many on this one, that now as I > tell them how I cured this, the dentist and the doctors seem to believe me, > but since they do not consult, they have only people like me telling them. > And hopefully they remember the next time a crazy woman , talking with a > lisp, complains about burning tongue, dry mouth, and HYPO ! > > -Pam L - ------------------------------------- The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. Please consult your doctor before changing or trying new treatments. ---------------------------------------- DISCLAIMER Advertisments placed on this yahoo groups list do not have the endorsement of the listowner. I have no input as to what ads are attached to emails. --------------------------------------------------------------------------------\ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Laurel, I've been completely shocked at the agony you've been put through, and then the shabby don't care attitude of the doctors. I'm hoping you find someone that will do a decent job for you soon. Most of us have been to quite a few before we find one worth going to, so I know what a hassle it is. Remember it doesn't have to be an M.D.; my D.O. does a great job. The New England Journal of Medicine (Volume 340:424-429 February 11, 1999) published a study, " Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism " . The conclusion of the study was that mood and neuropsychological function was improved by supplementing with T4 plus T3. Based on that study alone, one would think your doctor should be willing to prescribe T3. NEJM articles are free 6 months after publication. Registration is required, but it's free at www.nejm.org. If you want that article and have trouble getting it, I can forward you a copy. Good luck, Bertta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Laurel, I've been completely shocked at the agony you've been put through, and then the shabby don't care attitude of the doctors. I'm hoping you find someone that will do a decent job for you soon. Most of us have been to quite a few before we find one worth going to, so I know what a hassle it is. Remember it doesn't have to be an M.D.; my D.O. does a great job. The New England Journal of Medicine (Volume 340:424-429 February 11, 1999) published a study, " Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism " . The conclusion of the study was that mood and neuropsychological function was improved by supplementing with T4 plus T3. Based on that study alone, one would think your doctor should be willing to prescribe T3. NEJM articles are free 6 months after publication. Registration is required, but it's free at www.nejm.org. If you want that article and have trouble getting it, I can forward you a copy. Good luck, Bertta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Laurel, I've been completely shocked at the agony you've been put through, and then the shabby don't care attitude of the doctors. I'm hoping you find someone that will do a decent job for you soon. Most of us have been to quite a few before we find one worth going to, so I know what a hassle it is. Remember it doesn't have to be an M.D.; my D.O. does a great job. The New England Journal of Medicine (Volume 340:424-429 February 11, 1999) published a study, " Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism " . The conclusion of the study was that mood and neuropsychological function was improved by supplementing with T4 plus T3. Based on that study alone, one would think your doctor should be willing to prescribe T3. NEJM articles are free 6 months after publication. Registration is required, but it's free at www.nejm.org. If you want that article and have trouble getting it, I can forward you a copy. Good luck, Bertta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Laurel - Oh, yes, when I start ringing, it means it's gonna give you nghtmares if you don't prepare yourself ... I just wanted you to see how bad some people's tongues can get. Even as bad as those WERE, it wasn't considered serious...... THAT was my point. I'm sorry about your appetite. Actually whole grain bread is not a good idea when your gut is on the blink. Seeds, whole grains, nut skins, popcorn hulls - all lodge in my gut lining and seem to wreak havoc on it. Also the yeast in breads, raised donuts etc. will keep me in severe intestinal discomfort and pain. You might want to check out some candida websites, like the one I posted for you the other day, and see how changing the foods you eat might help with the whole problem. Yours is a very complicated situation, and you're going to have to sit down and try to BRIEFLY OUTLINE every complaint you have, and every procedure and medication and ????? you have tried, and all your different diagnoses. THEN take all THAT, plus copies of whatever testing these clowns HAVE run, and GO FIND YET ANOTHER DOCTOR. I've been through 26 endos, and countless numbers of regular docs. Good ones are FEW AND FAR BETWEEN, guaranteed! Keep looking for a doctor who has some idea of what he is doing, and whose office staff has enough competency and courtesy to keep you informed, and see that the tests you request are either run, or you are given a decent explanation as to why they WEREN'T run. Since you are on replacement hormone, I'm really confused. I don't even remember what thyroid treatment you've had. If you could just put a quick note under where you sign the bottom of the post, it would help others to keep track. Such as listing whether or not you've had RAI, or surgery, or what other complicatons (like TSS) you've had....... Not your whole lifetime medical history, just something to help others avoid confusion. Like if a poster says the synthroid dose is not enough - is that because they are on Block and Replace, or because they are replacing their hormones due to RAI or surgery? Your doctors have your records in front of them, so they should wake up and READ them. I'm not getting the whole picture here of your problem, so I'm just guessing from a distance. Not to mention my brain feels like chewing gum today. I don't understand what " damage " you're talking about. All I can say is, the antibiotics will destroy the GOOD flora in the gut, and let the bad " critters " take over after the antibiotics are withdrawn. Usually an infestation in the digestive system will also show up in the mouth - hence your tongue problems. Digestive problems can also cause you to see " spots " in front of your eyes. Just to show off-the-wall connections in symptoms....... I haven't had a chance to research alternative ways of dealing with tongue disorders yet, but I would imagine searching google.com with good key words might come up with something. Try searching " Dr. Walt Stoll and tongue disorders " . Might be quite enlightening.... Don't be discouraged about what has already happened to your gut, because the gut lining REPLACES ITSELF EVERY 14 HOURS. Just think of the possibilities to make some good changes and get several layers of gut to heal up...... If some of the digestive system has been removed, then make the most of what you have left. I lost 1/3 of my stomach in emergency surgery. It blew out due to perforating ulcers, and I also have a severely restricted pyloric valve. I can barely eat solid food - and this was 5 years ago. But I work around it. I basically LIVE on whole milk (the kind with NO BST hormones). We have to make the best of the situation God has given us. I'm always complaining to myself, why do I have to deal with SO many physical problems? But then I stop and realize there are others with much more serious problems to contend with. Such as Reeve. THAT man isn't ABOUT to give up!!!!!!!! Then I count my blessings, and things look better..... even if I'm in a hypO spell, and everything seems hopeless because my brain is in slow gear. BTW, I did try an antidepressant once, and those are TOTAL CRAP!!!!!!! I'm sure we ALL agree on one thing: >>>What I want is a life that doesn't revolve around Graves<<<< I think we need to work on having our lives " revolve " around other more important things, and think positively that someday we WILL beat this! Best Wishes, Chris ---------- Diagnosed with Graves' May 1979 On tapazole since May 1979 Age 53 - menopause at 46 Currently on 7.5 mg/da Tap, 30 mg/da inderal Latest testing: 8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0) 9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1) 9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1) ------------------- > > YES ! > > > > The dentist told me I was lucky it was white and not BLACK ! > > > > He said when it gets THAT dry, you can get a different bacteria > than the > > white one. The cure is to fix the dry mouth and the white or black > goes > > away. > > > > So if yours was gray...then mine turning gray must have been when > that next > > one was just starting. Because it was right then that I went on the > two new > > meds. > > > > Now as for the medical community. I saw so many on this one, that > now as I > > tell them how I cured this, the dentist and the doctors seem to > believe me, > > but since they do not consult, they have only people like me > telling them. > > And hopefully they remember the next time a crazy woman , talking > with a > > lisp, complains about burning tongue, dry mouth, and HYPO ! > > > > -Pam L - > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------- ------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Laurel - Oh, yes, when I start ringing, it means it's gonna give you nghtmares if you don't prepare yourself ... I just wanted you to see how bad some people's tongues can get. Even as bad as those WERE, it wasn't considered serious...... THAT was my point. I'm sorry about your appetite. Actually whole grain bread is not a good idea when your gut is on the blink. Seeds, whole grains, nut skins, popcorn hulls - all lodge in my gut lining and seem to wreak havoc on it. Also the yeast in breads, raised donuts etc. will keep me in severe intestinal discomfort and pain. You might want to check out some candida websites, like the one I posted for you the other day, and see how changing the foods you eat might help with the whole problem. Yours is a very complicated situation, and you're going to have to sit down and try to BRIEFLY OUTLINE every complaint you have, and every procedure and medication and ????? you have tried, and all your different diagnoses. THEN take all THAT, plus copies of whatever testing these clowns HAVE run, and GO FIND YET ANOTHER DOCTOR. I've been through 26 endos, and countless numbers of regular docs. Good ones are FEW AND FAR BETWEEN, guaranteed! Keep looking for a doctor who has some idea of what he is doing, and whose office staff has enough competency and courtesy to keep you informed, and see that the tests you request are either run, or you are given a decent explanation as to why they WEREN'T run. Since you are on replacement hormone, I'm really confused. I don't even remember what thyroid treatment you've had. If you could just put a quick note under where you sign the bottom of the post, it would help others to keep track. Such as listing whether or not you've had RAI, or surgery, or what other complicatons (like TSS) you've had....... Not your whole lifetime medical history, just something to help others avoid confusion. Like if a poster says the synthroid dose is not enough - is that because they are on Block and Replace, or because they are replacing their hormones due to RAI or surgery? Your doctors have your records in front of them, so they should wake up and READ them. I'm not getting the whole picture here of your problem, so I'm just guessing from a distance. Not to mention my brain feels like chewing gum today. I don't understand what " damage " you're talking about. All I can say is, the antibiotics will destroy the GOOD flora in the gut, and let the bad " critters " take over after the antibiotics are withdrawn. Usually an infestation in the digestive system will also show up in the mouth - hence your tongue problems. Digestive problems can also cause you to see " spots " in front of your eyes. Just to show off-the-wall connections in symptoms....... I haven't had a chance to research alternative ways of dealing with tongue disorders yet, but I would imagine searching google.com with good key words might come up with something. Try searching " Dr. Walt Stoll and tongue disorders " . Might be quite enlightening.... Don't be discouraged about what has already happened to your gut, because the gut lining REPLACES ITSELF EVERY 14 HOURS. Just think of the possibilities to make some good changes and get several layers of gut to heal up...... If some of the digestive system has been removed, then make the most of what you have left. I lost 1/3 of my stomach in emergency surgery. It blew out due to perforating ulcers, and I also have a severely restricted pyloric valve. I can barely eat solid food - and this was 5 years ago. But I work around it. I basically LIVE on whole milk (the kind with NO BST hormones). We have to make the best of the situation God has given us. I'm always complaining to myself, why do I have to deal with SO many physical problems? But then I stop and realize there are others with much more serious problems to contend with. Such as Reeve. THAT man isn't ABOUT to give up!!!!!!!! Then I count my blessings, and things look better..... even if I'm in a hypO spell, and everything seems hopeless because my brain is in slow gear. BTW, I did try an antidepressant once, and those are TOTAL CRAP!!!!!!! I'm sure we ALL agree on one thing: >>>What I want is a life that doesn't revolve around Graves<<<< I think we need to work on having our lives " revolve " around other more important things, and think positively that someday we WILL beat this! Best Wishes, Chris ---------- Diagnosed with Graves' May 1979 On tapazole since May 1979 Age 53 - menopause at 46 Currently on 7.5 mg/da Tap, 30 mg/da inderal Latest testing: 8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0) 9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1) 9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1) ------------------- > > YES ! > > > > The dentist told me I was lucky it was white and not BLACK ! > > > > He said when it gets THAT dry, you can get a different bacteria > than the > > white one. The cure is to fix the dry mouth and the white or black > goes > > away. > > > > So if yours was gray...then mine turning gray must have been when > that next > > one was just starting. Because it was right then that I went on the > two new > > meds. > > > > Now as for the medical community. I saw so many on this one, that > now as I > > tell them how I cured this, the dentist and the doctors seem to > believe me, > > but since they do not consult, they have only people like me > telling them. > > And hopefully they remember the next time a crazy woman , talking > with a > > lisp, complains about burning tongue, dry mouth, and HYPO ! > > > > -Pam L - > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------- ------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Laurel - Oh, yes, when I start ringing, it means it's gonna give you nghtmares if you don't prepare yourself ... I just wanted you to see how bad some people's tongues can get. Even as bad as those WERE, it wasn't considered serious...... THAT was my point. I'm sorry about your appetite. Actually whole grain bread is not a good idea when your gut is on the blink. Seeds, whole grains, nut skins, popcorn hulls - all lodge in my gut lining and seem to wreak havoc on it. Also the yeast in breads, raised donuts etc. will keep me in severe intestinal discomfort and pain. You might want to check out some candida websites, like the one I posted for you the other day, and see how changing the foods you eat might help with the whole problem. Yours is a very complicated situation, and you're going to have to sit down and try to BRIEFLY OUTLINE every complaint you have, and every procedure and medication and ????? you have tried, and all your different diagnoses. THEN take all THAT, plus copies of whatever testing these clowns HAVE run, and GO FIND YET ANOTHER DOCTOR. I've been through 26 endos, and countless numbers of regular docs. Good ones are FEW AND FAR BETWEEN, guaranteed! Keep looking for a doctor who has some idea of what he is doing, and whose office staff has enough competency and courtesy to keep you informed, and see that the tests you request are either run, or you are given a decent explanation as to why they WEREN'T run. Since you are on replacement hormone, I'm really confused. I don't even remember what thyroid treatment you've had. If you could just put a quick note under where you sign the bottom of the post, it would help others to keep track. Such as listing whether or not you've had RAI, or surgery, or what other complicatons (like TSS) you've had....... Not your whole lifetime medical history, just something to help others avoid confusion. Like if a poster says the synthroid dose is not enough - is that because they are on Block and Replace, or because they are replacing their hormones due to RAI or surgery? Your doctors have your records in front of them, so they should wake up and READ them. I'm not getting the whole picture here of your problem, so I'm just guessing from a distance. Not to mention my brain feels like chewing gum today. I don't understand what " damage " you're talking about. All I can say is, the antibiotics will destroy the GOOD flora in the gut, and let the bad " critters " take over after the antibiotics are withdrawn. Usually an infestation in the digestive system will also show up in the mouth - hence your tongue problems. Digestive problems can also cause you to see " spots " in front of your eyes. Just to show off-the-wall connections in symptoms....... I haven't had a chance to research alternative ways of dealing with tongue disorders yet, but I would imagine searching google.com with good key words might come up with something. Try searching " Dr. Walt Stoll and tongue disorders " . Might be quite enlightening.... Don't be discouraged about what has already happened to your gut, because the gut lining REPLACES ITSELF EVERY 14 HOURS. Just think of the possibilities to make some good changes and get several layers of gut to heal up...... If some of the digestive system has been removed, then make the most of what you have left. I lost 1/3 of my stomach in emergency surgery. It blew out due to perforating ulcers, and I also have a severely restricted pyloric valve. I can barely eat solid food - and this was 5 years ago. But I work around it. I basically LIVE on whole milk (the kind with NO BST hormones). We have to make the best of the situation God has given us. I'm always complaining to myself, why do I have to deal with SO many physical problems? But then I stop and realize there are others with much more serious problems to contend with. Such as Reeve. THAT man isn't ABOUT to give up!!!!!!!! Then I count my blessings, and things look better..... even if I'm in a hypO spell, and everything seems hopeless because my brain is in slow gear. BTW, I did try an antidepressant once, and those are TOTAL CRAP!!!!!!! I'm sure we ALL agree on one thing: >>>What I want is a life that doesn't revolve around Graves<<<< I think we need to work on having our lives " revolve " around other more important things, and think positively that someday we WILL beat this! Best Wishes, Chris ---------- Diagnosed with Graves' May 1979 On tapazole since May 1979 Age 53 - menopause at 46 Currently on 7.5 mg/da Tap, 30 mg/da inderal Latest testing: 8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0) 9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1) 9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1) ------------------- > > YES ! > > > > The dentist told me I was lucky it was white and not BLACK ! > > > > He said when it gets THAT dry, you can get a different bacteria > than the > > white one. The cure is to fix the dry mouth and the white or black > goes > > away. > > > > So if yours was gray...then mine turning gray must have been when > that next > > one was just starting. Because it was right then that I went on the > two new > > meds. > > > > Now as for the medical community. I saw so many on this one, that > now as I > > tell them how I cured this, the dentist and the doctors seem to > believe me, > > but since they do not consult, they have only people like me > telling them. > > And hopefully they remember the next time a crazy woman , talking > with a > > lisp, complains about burning tongue, dry mouth, and HYPO ! > > > > -Pam L - > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------- ------------------ > > Quote Link to comment Share on other sites More sharing options...
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