Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi , My GP is quite knowledgeable about thyroid/ adrenal/ fatigue issues, and maintains an open mind. However, he is quite expensive but in my opinion well worth it. He is based in Dublin, so give me a shout if you want his contact details. Welcome to the forum. Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Ah Ha! Would I be correct in thinking this is Dr McDonagh ?...and yes, he is quite expensive, but I have heard he is excellent. Luv - Sheila Hi ,My GP is quite knowledgeable about thyroid/ adrenal/ fatigue issues,and maintains an open mind. However, he is quite expensive but in my opinion well worth it.He is based in Dublin, so give me a shout if you want his contact details.Welcome to the forum.Regards No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1211 - Release Date: 06/01/2008 11:57 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Many thanks - I have him on my list, but not that he practices in Ireland too. Luv - Sheila > Hi Sheila, > > His name is Magovern. You can get more info on > http://www.drummartinclinic.ie/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Wednesday, February 27, 2008, 12:16:54 PM, you wrote: > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have > a VG band and have lost about 45 lbs. on this journey. Hi Arch, welcome. I can't remember meeting you at the bash, but probably did, since there were all of five of us guys there, I think. (Not that there's anything wrong with being in the company of a couple hundred charming women (well, MOST of them are and were)). Anyway, comments below. > Im learning > about fill levels now and at present at 4.5 cc's and having difficulty PBing. First, assume you know the amounts mean nothing. There is only too tight, too loose, or just right. Just like the three bears. > Sometimes I can pin it down to hasty eating or too big a bite, but > frankly sometimes I can't. One of the hardest things for most of us, including me, is " mindful eating " . If I'm distracted from the actual EATING by multitasking (as I just was when got a piece of sliced ham semi-stuck eating at my desk while reading email), talking with people, watching TV, etc, it is WAAAYYY too easy to not pay lots of attention. > Like once with yogurt of all things. Yogurt is gummy, not runny. Same for lots of other " softs " , including soft cooked eggs, overcooked pasta, etc, etc. > Im looking at this latest fill a 1 cc fill done at the Seattle bash > and wondering if Im a little overfull. I can drink water, sometimes > it takes a few moments to giggle down but it goes. That's pretty tight. Are you tighter in morning like many of us are? Remember, tightness will vary by day, time of day, and totally unknown reasons. As an old friend says, " the band is a fickle bitch, and she's in charge, not you " . > Soft foods as > generally no trouble. But meats, rice, which until this last fill > was not a problem food for me, even my old standby of chili seem to > really take time to settle in. Taking time isn't necessarily bad. > I get tightness in the center of my > chest, which I equate to being the location of my stoma. Many who are even " tougher love " than me would say that once you get that you're done for the meal. I'm not quite that strict, but if I'm stuck, I'm done. > I have to > sit and let things settle down after a bite or two. The real > difficulty Im having is the level of " strictness " that Im > experiencing in regard to my reacting with sliming and pbing. Sliming isn't good, but barfing (PBing for those who insist on that dreadful euphemism) is bad. One of the hard things to do is to learn what some call the " soft stop " , since the feeling is VERY different from the " oh, God, I couldn't possibly cram in another bite " feeling of the old days. > It > appears that just a very small change in the texture or size of the > food Im eating sets it off and Im at it for 45 minutes to an hour. > This is definitely not fun and worrisome. I don't want to affect my > band with this reaction. Im open for suggestions. Suggestions above. > Who having a 1/2 cc unfill make a significant difference or is this > the sweet spot a very critical gatekeeper? As to amounts, you've really got to ignore them. For me even 0.1 can make a big difference, and know it can for others too. And of course the " just right " for any ten people with the same band will be different for each. Let us know more, dan -- " It's OK to be a little broken, everybody's broken in this life " Jon Bon Jovi Dan Lester, Boise, Idaho, USA www.mylapband.tk Banded 4/27/03, Dr. Ortiz, Tijuana Started at 355, at goal in the 210-220 range for almost 4 years Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 -- Dear Archie, Thanks again for being the vendor coordinator at the Seattle Bash and Band Conference. You are unfortunately OVERFILLED. You can eat what you described because you are probably stretching out your pouch and the food is laying in the pouch probably backing up into the esophagus. The symptoms you described are going to lead to reflux. Guaranteed. I know you get a fill only, but you need a fluro at this point to gauge your fill. You may have been overfilled even before your last fill, already stretching the pouch out and you didn't know it. One of the most important things I learned from the Bash 2 years ago was when the docs talked about potential slips only being made worse by additional fills. I've heard that someone may be starting to do fills with fluro on the East side. Call me and I will try to find out for you. In the meantime see if you can back off by at least 1/2 cc. Take care, joanne in seattle. - In , archie crane <jamilcrane@...> wrote: > > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have a VG band and have lost about 45 lbs. on this journey. Im learning about fill levels now and at present at 4.5 cc's and having difficulty PBing. > Sometimes I can pin it down to hasty eating or too big a bite, but frankly sometimes I can't. Like once with yogurt of all things. > Im looking at this latest fill a 1 cc fill done at the Seattle bash and wondering if Im a little overfull. I can drink water, sometimes it takes a few moments to giggle down but it goes. Soft foods as generally no trouble. But meats, rice, which until this last fill was not a problem food for me, even my old standby of chili seem to really take time to settle in. I get tightness in the center of my chest, which I equate to being the location of my stoma. I have to sit and let things settle down after a bite or two. The real difficulty Im having is the level of " strictness " that Im experiencing in regard to my reacting with sliming and pbing. It appears that just a very small change in the texture or size of the food Im eating sets it off and Im at it for 45 minutes to an hour. This is definitely not fun and worrisome. I don't want to affect my band with this reaction. Im open for suggestions. > Who having a 1/2 cc unfill make a significant difference or is this the sweet spot a very critical gatekeeper? > > > Arch > 9/27/07 > 325/278/195 > > > > ______________________________________________________________________ ______________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hi, Arch ! Grear to see you here! I loved finally meeting you -and your lovely wife - at the Seattle Bash. It sounds to me s if you're a bt too tight. things like chili - a soft food - should never be a problem. then, we need o be able o at solid red meat and other solid protein easily, if we are following band rules. We should also be easily able to drink all fluids - 3-4 sips, then maybe a rest of 10 seconds. To me, anytghing less thyan this is an overfill. if you got a fill from Fox, he is known for agresive fills, so you need to be very careful. He is retired and doesn't do many fills. A 1/2 cc unfill is also very agressive - at this point, you shuld be creeping up and down no more than maybe 0.2 cc. Look again at that fill card i posted both here and on kur's site, and see how TINY TINY a difference in stoma size there is bewteen an overfill and an underfull - and these ar about 0.1 - 0.2 cc difference I think you'd do well with maybe a 0.2 cc unfill. Far fewer problemns, free drinking, and still with decent restriction Sandy r - > > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have a VG band and have lost about 45 lbs. on this journey. Im learning about fill levels now and at present at 4.5 cc's and having difficulty PBing. > Sometimes I can pin it down to hasty eating or too big a bite, but frankly sometimes I can't. Like once with yogurt of all things. > Im looking at this latest fill a 1 cc fill done at the Seattle bash and wondering if Im a little overfull. I can drink water, sometimes it takes a few moments to giggle down but it goes. Soft foods as generally no trouble. But meats, rice, which until this last fill was not a problem food for me, even my old standby of chili seem to really take time to settle in. I get tightness in the center of my chest, which I equate to being the location of my stoma. I have to sit and let things settle down after a bite or two. The real difficulty Im having is the level of " strictness " that Im experiencing in regard to my reacting with sliming and pbing. It appears that just a very small change in the texture or size of the food Im eating sets it off and Im at it for 45 minutes to an hour. This is definitely not fun and worrisome. I don't want to affect my band with this reaction. Im open for suggestions. > Who having a 1/2 cc unfill make a significant difference or is this the sweet spot a very critical gatekeeper? > > > Arch > 9/27/07 > 325/278/195 > > > > ______________________________________________________________________ ______________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Dan, hmmm. to loose, too tight or just right. the three bears? i think you have been reading something else. LOL george > > > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have > > a VG band and have lost about 45 lbs. on this journey. > > Hi Arch, welcome. I can't remember meeting you at the bash, but > probably did, since there were all of five of us guys there, I think. > (Not that there's anything wrong with being in the company of a couple > hundred charming women (well, MOST of them are and were)). > > Anyway, comments below. > > > Im learning > > about fill levels now and at present at 4.5 cc's and having difficulty PBing. > > First, assume you know the amounts mean nothing. There is only too > tight, too loose, or just right. Just like the three bears. > > > Sometimes I can pin it down to hasty eating or too big a bite, but > > frankly sometimes I can't. > > One of the hardest things for most of us, including me, is " mindful > eating " . If I'm distracted from the actual EATING by multitasking (as > I just was when got a piece of sliced ham semi-stuck eating at my desk > while reading email), talking with people, watching TV, etc, it is > WAAAYYY too easy to not pay lots of attention. > > > Like once with yogurt of all things. > > Yogurt is gummy, not runny. Same for lots of other " softs " , including > soft cooked eggs, overcooked pasta, etc, etc. > > > Im looking at this latest fill a 1 cc fill done at the Seattle bash > > and wondering if Im a little overfull. I can drink water, sometimes > > it takes a few moments to giggle down but it goes. > > That's pretty tight. Are you tighter in morning like many of us are? > Remember, tightness will vary by day, time of day, and totally unknown > reasons. As an old friend says, " the band is a fickle bitch, and she's > in charge, not you " . > > > Soft foods as > > generally no trouble. But meats, rice, which until this last fill > > was not a problem food for me, even my old standby of chili seem to > > really take time to settle in. > > Taking time isn't necessarily bad. > > > I get tightness in the center of my > > chest, which I equate to being the location of my stoma. > > Many who are even " tougher love " than me would say that once you get > that you're done for the meal. I'm not quite that strict, but if I'm > stuck, I'm done. > > > I have to > > sit and let things settle down after a bite or two. The real > > difficulty Im having is the level of " strictness " that Im > > experiencing in regard to my reacting with sliming and pbing. > > Sliming isn't good, but barfing (PBing for those who insist on that > dreadful euphemism) is bad. One of the hard things to do is to learn > what some call the " soft stop " , since the feeling is VERY different > from the " oh, God, I couldn't possibly cram in another bite " feeling > of the old days. > > > It > > appears that just a very small change in the texture or size of the > > food Im eating sets it off and Im at it for 45 minutes to an hour. > > This is definitely not fun and worrisome. I don't want to affect my > > band with this reaction. Im open for suggestions. > > Suggestions above. > > > Who having a 1/2 cc unfill make a significant difference or is this > > the sweet spot a very critical gatekeeper? > > As to amounts, you've really got to ignore them. For me even 0.1 can > make a big difference, and know it can for others too. And of course > the " just right " for any ten people with the same band will be > different for each. > > Let us know more, > > dan > > > > -- > " It's OK to be a little broken, everybody's broken in this life " Jon Bon Jovi > Dan Lester, Boise, Idaho, USA www.mylapband.tk > Banded 4/27/03, Dr. Ortiz, Tijuana > Started at 355, at goal in the 210-220 range for almost 4 years > Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Well, I've been reading for about 62 years, and I must have read three bears in there somewhere. Know I read it to my kids when they were very little. Actually, the Three Bears works for a great many things in life....you need to be " down the middle " and not in the ditch on either side of the road, to mix metaphors. They both say the same thing, of course. dan Thursday, February 28, 2008, 7:20:29 AM, you wrote: > hmmm. to loose, too tight or just right. the three bears? i think > you have been reading something else. LOL -- " It's OK to be a little broken, everybody's broken in this life " Jon Bon Jovi Dan Lester, Boise, Idaho, USA www.mylapband.tk Banded 4/27/03, Dr. Ortiz, Tijuana Started at 355, at goal in the 210-220 range for almost 4 years Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Thanks Sandy for the reply, The reason Im vascillating around getting an unfill is that I am satiated between meals and I am now losing weigh. I was not losing for a couple of months and definitely was not satiated after eating. Those are the positives. I am so used to eating out and reading the paper or having a conversation with people while I eat. It is really lesson time for me. I want to make it clear that the vast majority of the time I am sliming when I have problems. I don't get much up other than mucous and it isn't violent. Unlike others who have stated they can't get water down, I can. The morning and ;the first meal is always tighter than later in the day. I going to back off on solids for a day or so and get my stoma settled down, then take another look at how I am doing with solids. Thanks so very much for your support Arch > > > > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have > a VG band and have lost about 45 lbs. on this journey. Im learning > about fill levels now and at present at 4.5 cc's and having > difficulty PBing. > > Sometimes I can pin it down to hasty eating or too big a bite, but > frankly sometimes I can't. Like once with yogurt of all things. > > Im looking at this latest fill a 1 cc fill done at the Seattle bash > and wondering if Im a little overfull. I can drink water, sometimes > it takes a few moments to giggle down but it goes. Soft foods as > generally no trouble. But meats, rice, which until this last fill > was not a problem food for me, even my old standby of chili seem to > really take time to settle in. I get tightness in the center of my > chest, which I equate to being the location of my stoma. I have to > sit and let things settle down after a bite or two. The real > difficulty Im having is the level of " strictness " that Im > experiencing in regard to my reacting with sliming and pbing. It > appears that just a very small change in the texture or size of the > food Im eating sets it off and Im at it for 45 minutes to an hour. > This is definitely not fun and worrisome. I don't want to affect my > band with this reaction. Im open for suggestions. > > Who having a 1/2 cc unfill make a significant difference or is this > the sweet spot a very critical gatekeeper? > > > > > > Arch > > 9/27/07 > > 325/278/195 > > > > > > > > > ______________________________________________________________________ > ______________ > > Be a better friend, newshound, and > > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 > > > > > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have > > > a VG band and have lost about 45 lbs. on this journey. > > > > Hi Arch, welcome. I can't remember meeting you at the bash, but > > probably did, since there were all of five of us guys there, I > think. > > (Not that there's anything wrong with being in the company of a > couple > > hundred charming women (well, MOST of them are and were)). > > > > Anyway, comments below. > > > > > Im learning > > > about fill levels now and at present at 4.5 cc's and having > difficulty PBing. > > > > First, assume you know the amounts mean nothing. There is only too > > tight, too loose, or just right. Just like the three bears. > > > > > Sometimes I can pin it down to hasty eating or too big a bite, but > > > frankly sometimes I can't. > > > > One of the hardest things for most of us, including me, is " mindful > > eating " . If I'm distracted from the actual EATING by multitasking > (as > > I just was when got a piece of sliced ham semi-stuck eating at my > desk > > while reading email), talking with people, watching TV, etc, it is > > WAAAYYY too easy to not pay lots of attention. > > > > > Like once with yogurt of all things. > > > > Yogurt is gummy, not runny. Same for lots of other " softs " , > including > > soft cooked eggs, overcooked pasta, etc, etc. > > > > > Im looking at this latest fill a 1 cc fill done at the Seattle > bash > > > and wondering if Im a little overfull. I can drink water, > sometimes > > > it takes a few moments to giggle down but it goes. > > > > That's pretty tight. Are you tighter in morning like many of us are? > > Remember, tightness will vary by day, time of day, and totally > unknown > > reasons. As an old friend says, " the band is a fickle bitch, and > she's > > in charge, not you " . > > > > > Soft foods as > > > generally no trouble. But meats, rice, which until this last fill > > > was not a problem food for me, even my old standby of chili seem > to > > > really take time to settle in. > > > > Taking time isn't necessarily bad. > > > > > I get tightness in the center of my > > > chest, which I equate to being the location of my stoma. > > > > Many who are even " tougher love " than me would say that once you get > > that you're done for the meal. I'm not quite that strict, but if I'm > > stuck, I'm done. > > > > > I have to > > > sit and let things settle down after a bite or two. The real > > > difficulty Im having is the level of " strictness " that Im > > > experiencing in regard to my reacting with sliming and pbing. > > > > Sliming isn't good, but barfing (PBing for those who insist on that > > dreadful euphemism) is bad. One of the hard things to do is to learn > > what some call the " soft stop " , since the feeling is VERY different > > from the " oh, God, I couldn't possibly cram in another bite " feeling > > of the old days. > > > > > It > > > appears that just a very small change in the texture or size of > the > > > food Im eating sets it off and Im at it for 45 minutes to an > hour. > > > This is definitely not fun and worrisome. I don't want to affect > my > > > band with this reaction. Im open for suggestions. > > > > Suggestions above. > > > > > Who having a 1/2 cc unfill make a significant difference or is > this > > > the sweet spot a very critical gatekeeper? > > > > As to amounts, you've really got to ignore them. For me even 0.1 can > > make a big difference, and know it can for others too. And of course > > the " just right " for any ten people with the same band will be > > different for each. > > > > Let us know more, > > > > dan > > > > > > > > -- > > " It's OK to be a little broken, everybody's broken in this life " > Jon Bon Jovi > > Dan Lester, Boise, Idaho, USA www.mylapband.tk > > Banded 4/27/03, Dr. Ortiz, Tijuana > > Started at 355, at goal in the 210-220 range for almost 4 years > > Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 > > > > Hi, Im Arch. I was banded by Dr. Kuri in September of 07. I have > a VG band and have lost about 45 lbs. on this journey. Im learning > about fill levels now and at present at 4.5 cc's and having > difficulty PBing. > > Sometimes I can pin it down to hasty eating or too big a bite, but > frankly sometimes I can't. Like once with yogurt of all things. > > Im looking at this latest fill a 1 cc fill done at the Seattle bash > and wondering if Im a little overfull. I can drink water, sometimes > it takes a few moments to giggle down but it goes. Soft foods as > generally no trouble. But meats, rice, which until this last fill > was not a problem food for me, even my old standby of chili seem to > really take time to settle in. I get tightness in the center of my > chest, which I equate to being the location of my stoma. I have to > sit and let things settle down after a bite or two. The real > difficulty Im having is the level of " strictness " that Im > experiencing in regard to my reacting with sliming and pbing. It > appears that just a very small change in the texture or size of the > food Im eating sets it off and Im at it for 45 minutes to an hour. > This is definitely not fun and worrisome. I don't want to affect my > band with this reaction. Im open for suggestions. > > Who having a 1/2 cc unfill make a significant difference or is this > the sweet spot a very critical gatekeeper? > > > > > > Arch > > 9/27/07 > > 325/278/195 > > > > > > > > > ______________________________________________________________________ > ______________ > > Be a better friend, newshound, and > > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 I really heard itsy bitsy spider, but then Ive only been reading for 60 years. Arch > > > hmmm. to loose, too tight or just right. the three bears? i think > > you have been reading something else. LOL > > > -- > " It's OK to be a little broken, everybody's broken in this life " Jon Bon Jovi > Dan Lester, Boise, Idaho, USA www.mylapband.tk > Banded 4/27/03, Dr. Ortiz, Tijuana > Started at 355, at goal in the 210-220 range for almost 4 years > Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Good on the water. I almost never eat anything solid in morning. Get up at 5, have some tea and maybe a protein drink (200 calories, 10 grams of protein). Then eat " breakfast " or " lunch " or whatever about 11 or so. Sometimes later. Right now I'm having " late lunch " , some shrimp and a few wheat thins. Did have some eggs about ten today. dan Thursday, February 28, 2008, 12:34:08 PM, you wrote: > Unlike others who have stated they can't get water down, I can. The morning and ;the first > meal is always tighter than later in the day. -- " It's OK to be a little broken, everybody's broken in this life " Jon Bon Jovi Dan Lester, Boise, Idaho, USA www.mylapband.tk Banded 4/27/03, Dr. Ortiz, Tijuana Started at 355, at goal in the 210-220 range for almost 4 years Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Not sure how going up the water spout relates to the three bears, but whatever. And at our house (meaning childhood, and to this day as old geezers) there is still the debate about whether it is itsy bitsy spider (which is wrong) or eensy beensy spider (which is right) And since I must have met you, remind my senile and fuzzy mind which guy you were/are. dan Thursday, February 28, 2008, 12:44:07 PM, you wrote: > I really heard itsy bitsy spider, but then Ive only been reading for 60 years. > Arch -- " It's OK to be a little broken, everybody's broken in this life " Jon Bon Jovi Dan Lester, Boise, Idaho, USA www.mylapband.tk Banded 4/27/03, Dr. Ortiz, Tijuana Started at 355, at goal in the 210-220 range for almost 4 years Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Agreed. george > >Well george, its better than itsy bitsy spider. > > Arch > > > > > Dan, > > > > hmmm. to loose, too tight or just right. the three bears? i think > > you have been reading something else. LOL > > > > > > george > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 Hi and welcome Honey, If your ferritan is low, that one fact alone will interfer with absorbing your thyroid meds. You can take a deep breathe now, and rest in the knowledge that by spending time here you have started your journey to becoming well. Those here walk/have walked the same journey. When you get the bloods, politely ask for a printed copy and post the results together with ranges. Try and include a Vit D3 OH Blood test. VitD3 is a hormone and can influence other hormones, especially depression and weight. You have just come out of a long winter and may need a boost. I live in australia and was deficient and my doc is finding so many ppl deficient (including herself) now that she is aware of it. In Hawaii one Endo is diagnosing 5 ppl a week................ A symptom of hypo is depression and so is VitD3 deficiency. jennyfreeman > Hi Everyone, > > I'm new to the board and just wanted to say hi and inroduce myself. > > Because I have such an abudance of pent up emotion on the subject I > find it hard to edit but I'll try! > > I'm 21 and 3 years ago I was put on an antidepressant which > kickstarted this whole mess. > > Everything has changed, my appearence, my confidence, my creativity - > I feel like someone has squeezed out all the juice and left me with > pulp. I have most symptoms of hypothyroidism and now I look and feel > as if I've aged 20 years. My levels are subclinical and I've spent a > lot of money so far looking for a solution. I saw the a private > consultant who started me on Thyroxine and Tetroxin last summer and > up until a few months ago I was on a dose of 60mcg of the latter and > 250mcg of the prior. I was feeling ok, a few things improved like my > constipation and the brain fog but when i had my bloods they came > back really abnormal so I'm down to just 60mcg Tetroxin. > > My plan had been to take more and more stuff until I felt better but > know I'm worried about stuff like osteoporosis etc and so is my GP! > It's fuuny though because technically I was really hyper and yet I > didn't feel it at all; as someone who has had panic attacks and > suffers with anxiety I would know instantly if something was making > me on edge but I felt more fine than usual and certainly wasn't > bouncing off the walls. How hard this all is, everything else pales > in comparison; my life is on hold until I can resolve this but what > i'm stuck with it? I'm so scared. My next step is to get an adrenal > test, candida test, reverse t3 test and perhaps start taking some > liquid Iron as my ferritin is low which could be hindering things. I > can't even let myself think about what I'll do if none of these work. > > Does it ever get better or do you just make do? > > It's a comfort to be in the presence of all of you, thanks for > letting me share xxxx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 Hi there I had to google tetroxin (T3) as I had never heard of it, I had only heard of it called Cytomel and you are on a lot to say you are subclinical imho. The thyroxine also seems high, did you start off on this dose? Wow, your adrenals are young and must have been ok at that point anyway. I am not an expert in these things but I have to say I was sleeping for 4 days in a row without refreshment before I was diagnosed and going bald but I still only ended up on a gradual increase to 175-200mcg thyroxine and though everyone else is different I am just a little concerned about your doses thats all as some of that thyroxine will have been converting to T3 as well as the direct dosage of Tetroxine. Are you abroad as the Tetroxine is sub licenced in UK? Anyway I digress, I am sure the ladies who advised me on this forum will explain to you and to me what to do in the cases of subclinical hypo and other tests which you mention like the adrenal one. I had one of those but the doc won't treat so I am having to treat according to recommendations on the forum. Although none of us are medically qualified many have a wealth of experience in treatments which they can share their experiences of with you. Hope you find your answers, sincerely I do. God bless Dawnx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 HELLO HONEY, WELCOME TO THE FORUM. MY RESPONSES TO BITS OF YOUR MESSAGE ARE WRITTEN IN BELOW (SEE BELOW). I'M NOT MEDICALLY TRAINED, SO PLEASE CHECK ANY OF MY SUGGESTIONS WITH YOUR DOCTOR. MY RESPONSES ARE BASED ON MY PERSONAL EXPERIENCE WITH THIS STUFF. THE TESTS I'VE SUGGESTED ARE TESTS THAT MY DOCS HAVE ORDERED FOR ME. P > I'm 21 and 3 years ago I was put on an antidepressant which kickstarted this whole mess. HELLO HONEY, WERE YOU PUT ON THE ANTI-DEPRESSANT TO TRY AND CONTROL THE ANXIETY AND THE PANIC ATTACKS OR WAS IT FOR DEPRESSION, OR ALL OF THE ABOVE? > Everything has changed, my appearence, my confidence, my creativity - I feel like someone has squeezed out all the juice and left me with pulp. I KNOW FOR A FACT THAT THIS CAN HAPPEN WITH ANTIDEPRESSANT USE, BUT THIS CAN ALSO HAPPEN WITH HYPOTHYROIDISM My levels are subclinical and I've spent a lot of money so far looking for a solution. I saw the a private consultant who started me on Thyroxine and Tetroxin last summer and up until a few months ago I was on a dose of 60mcg of the latter and 250mcg of the prior. I was feeling ok, a few things improved like my constipation and the brain fog but when i had my bloods they came back really abnormal so I'm down to just 60mcg Tetroxin. HONEY, COULD YOU PLEASE POST YOUR MOST RECENT FERRITIN AND THYROID BLOOD TEST RESULTS (WITH CORRESPONDING REFERENCE RANGES), AS WELL AS ANY OTHER RECENT RESULTS? WE ALL TEND TO DO THAT ON THIS FORUM SO WE CAN GET FURTHER FEEDBACK FROM PEOPLE. DO YOU HAVE THE TEST RESULTS FROM WHEN YOU WERE INITIALLY DIAGNOSED? IF SO, IT WOULD BE GREAT TO SEE THOSE TOO. > > It's fuuny though because technically I was really hyper and yet I didn't feel it at all; as someone who has had panic attacks and suffers with anxiety I would know instantly if something was making me on edge but I felt more fine than usual and certainly wasn't bouncing off the walls. ...................... I'm so scared. HONEY, DO YOU STILL HAVE PANIC ATTACKS? HOW LONG HAS THE ANXIETY BEEN THERE? IT MIGHT ALL BE TO DO WITH THE THYROID, HOWEVER IF THE PANIC/ANXIETY PRE-DATES THE THYROID PROBLEMS, HAVE YOU HAD ANY OTHER HELP WITH THE PANIC/ANXIETY, AS IN TECHNIQUES, ETC. IF NOT, YOU CAN SEND ME AN EMAIL AND I AM MORE THAN HAPPY TO DISCUSS THIS ASPECT WITH YOU AS I HAVE SOME PERSONAL EXPERIENCE IN THIS AREA. NOT GOING TO GO INTO IT HERE AS IS A THYROID FORUM AND DON'T WANT TO POST SOME OF THE STUFF HERE. My next step is to get an adrenal test, candida test, reverse t3 test and perhaps start taking some liquid Iron as my ferritin is low which could be hindering things. I > can't even let myself think about what I'll do if none of these work.PLEASE DON'T JUST GET A REVERSE T3 TEST. MY DOCTORS (TWO OF THEM AT THE MOMENT AT DIFFERENT DOC SURGERIES!) TOLD ME THAT REVERSE T3 AND FREE T3 NEED TO BE DONE IN CONJUNCTION WITH EACHOTHER FOR THE RESULTS TO BE MEANINGFUL. TSH, FREE T4 AND THYROID ANTIBODIES TESTS SHOULD BE DONE AT SAME TIME TOO TO GIVE A FULL PICTURE OF WHAT IS HAPPENING TO YOUR THYROID. THE THYROID ANTIBODIES TEST WILL CHECK FOR THYROID AUTOIMMUNE DISEASE. I DISCOVERED LAST YEAR THAT I HAVE HASHIMOTO'S DISEASE BY HAVING MY ANTIBODY LEVELS TESTED. OTHER USEFUL TESTS ARE 25-HYDROXY-D (TO TEST YOUR VITAMIN D LEVELS). THIS PARTICULAR TEST (THE HYDROXY TEST RATHER THAN THE DI-HYRDROXY TEST) IS THE ONE THAT DOC'S USUALLY USE TO INITIALLY TEST YOUR VIT D LEVELS. CLICK ON THE LINK BELOW TO VIEW INFO FROM A VERY USEFUL WEBSITE ABOUT LAB TESTS. IT IS A WELL RESPECTED WEBSITE. FYI, I WAS VERY LOW IN VIT D EVEN AFTER SPENDING ALMOST AN ENTIRE SUMMER IN THE SUN BECAUSE OF MY WORK! OTHER USEFUL TESTS ARE PLASMA ZINC, COPPER (THIS SHOULD BE DONE AT SAME TIME AS THE ZINC TEST AS THEY ARE LOOKED AT TOGETHER), B12 / FOLATE, SELENIUM, MAGNESIUM. http://www.labtestsonline.org.uk/understanding/analytes/vitamin_d/sample.html (if the link doesn't work on this forum, you will need to manually copy it from http:.....to .html) > Does it ever get better or do you just make do? MY FAMILY FRIEND WHO IS IN HER 80'S HAD A FANTASTIC RESPONSE TO THYROXINE ALONE AND NOW SHE IS HARD TO KEEP UP WITH! SHE DEFINITELY HAS MORE ENERGY THAN ME AND SAYS THAT THYROXINE IS A 'WONDER PILL'. UNFORTUNATELY IT DOESN'T WORK LIKE THIS FOR ME. MY ENERGY LEVELS TEND TO GO UP AND DOWN, BUT THE FACT THAT THEY VERY OCCASIONALLY RISE GIVES ME HOPE THAT MY BODY WILL RECOVER ONE DAY. > > It's a comfort to be in the presence of all of you, thanks for > letting me share xxxxANYTIME HONEY. I FIND IT VERY COMFORTING TO BE A PART OF THIS FORUM TOO. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Hi Honey I'm new to the board and just wanted to say hi and inroduce myself. Welcome aboard and I hope you will get the support and help you so obviously need.I'm 21 and 3 years ago I was put on an antidepressant which kickstarted this whole mess. A diagnosis of depression is too easily made - and this is usually because doctors do not understand the problems caused through being hypothyroid, or having low adrenal reserve. I wish they would realise how much anguish they cause to millions of patients throughout the world with their incorrect diagnosis.Everything has changed, my appearence, my confidence, my creativity - I feel like someone has squeezed out all the juice and left me with pulp. I have most symptoms of hypothyroidism and now I look and feel as if I've aged 20 years. Do you also have the 'signs' of hypothyroidism. Go to our website www.tpa-uk.org.uk and click on 'Hypothyroidism' in the Menu and in the drop down Menu click on 'Symptoms' and 'Signs'. Check these out against what you are sufferingnd showing and make a list of both of these. My levels are subclinical and I've spent a lot of money so far looking for a solution. I saw the a private consultant who started me on Thyroxine and Tetroxin last summer and up until a few months ago I was on a dose of 60mcg of the latter and 250mcg of the prior. I was feeling ok, a few things improved like my constipation and the brain fog but when i had my bloods they came back really abnormal so I'm down to just 60mcg Tetroxin. That is a high dose. Can you post your last blood results. We need your TSH, Free T4, Free T3 and also, have you been tested to see whether you have antibodies to your thyroid. This will tell you whether you have Hashimoto's disease. Antibodies gradually destroy your thyroid gland so you are unable to secrete the thyroid hormones your body needs. The treatment is the same as any other cause of hypothyroidism, but you will probably have other autoimmune problems. Has any member of your family got autoimmune diseases - or hypothyroidism? Did your Doctor only reduce your medication because of your blood results, didn't he consider that you felt OK on that previous dose?My plan had been to take more and more stuff until I felt better but know I'm worried about stuff like osteoporosis etc and so is my GP! There is actually no evidence that taking high doses of thyroxine causes osteoporis. Did your GP suggest a bone scan. He would have his mind set at rest (and so would you) if this was arranged. It's fuuny though because technically I was really hyper and yet I didn't feel it at all; as someone who has had panic attacks and suffers with anxiety I would know instantly if something was making me on edge but I felt more fine than usual and certainly wasn't bouncing off the walls. How long have you been on just 60mcgs Tertroxin? You don't mention how you are feeling right now. How hard this all is, everything else pales in comparison; my life is on hold until I can resolve this but what i'm stuck with it? I'm so scared. My next step is to get an adrenal test, candida test, reverse t3 test and perhaps start taking some liquid Iron as my ferritin is low which could be hindering things. I can't even let myself think about what I'll do if none of these work. If, after testing, it is found that you do suffer with low adrenal reserve, you would need to take adrenal supplements to boost your adrenals. You would have to stop your 60 mcgs Tertroxin for a couple of weeks while you do this as your adrenals would not be able to cope with thyroid hormone replacement and adrenal boosting at the same time. You are young, and your adrenals may be OK, but wait and see on this one, and the same with Candida (if you test positive). We will look into that issue at the time you have your results. Can you tell us what your ferritin level was that made you decide you needed liquid iron. If you do need it, remember never to take iron at the same time as your thyroid hormone replacement or later. You should take it at least 3 to 4 hours away as iron stops the thyroid hormones from being utlised.Does it ever get better or do you just make do? It does, but it can be a long road to travel. Hopefully, we have lots of information in the FILES section of this forum and also the LINKS, and also lots of information on the website. Read as much as you can and understand the connections between all the different illnesses that go hand in hand with hypothyroidism and how we need to eliminate these first. Anything you don't understand, just shout, somebody will be along to help you. Be assured though, there is light at the end of the tunnel.It's a comfort to be in the presence of all of you, thanks for letting me share xxxx This is what we are here for. Good luck. Sheila No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.5/1400 - Release Date: 27/04/2008 09:39 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Hi Everyone, Thanks for the advice - I didn't want to overload my last post with info but I'll add some more if it makes this clearer. I was tested for antibodies but they came back negative however Autoimmune diseases do run in the family - my brother has Crohn's and my mother has alopeica areta. I had anemia when I was younger and my levels in the last few years have been low even though they were in range. Here's my latest: RED CELL COUNT *3.92 x10^12/L (3.95 - 5.15) Vitamin B12 473 pg/ml (197 - 866) BIOCHEMISTRY IRON 9.0 umol/L (6.6 - 26.0) T.I.B.C 63 umol/L (41 - 77) IRON SATURATION *14 % (20 - 55) FERRITIN 24 ug/L (13 - 150) Optimum Ferritin level for females : >27ug/L HAEMATOLOGY Red cell folate 721 nmol/L 338 - 1970 I don't have all my other test results as they're with my consultant but I remember my iron has always been low - when my private GP got these results she said not to worry to much but perhaps take supplements. When I first got my thyroid tested with my NHS GP my tsh TSH was 3.26 and my T4 was 10.4, that was in 2006. I had it tested again in 2007 my another private consultant and TSH was 2.67 but I can't remember the T3/T4, sorry. My depression kinda pre-dates my other symptoms but compared to what I'm feeling now I think it was just typical indulgent teenage angst. The anxiety however came on severely after I started the antidepressant(ZISPIN)along with the other (hypothyroid) symptoms. I have spent more than I can afford on professors/specialists etc in the last few years and I'm on a secretary wage so I can't get tests as often as I like. My latest thyroid function tests are below: TSH - *<0.01 mIU/L 0.27 - 4.20 FT4 - *44.9 pmol/l 12.0 - 22.0 FT3 - *13.7 pmol/L 4.0 - 6.8 My private GP (not my specialist who put me on it) advised me to stop my meds. Sheila, I have most of the symptoms on the checklist, it feels as if everything is slowing down. For example before I would drink a 2 ltr bottle of water and go to the toilet frequently throughout the day, but then it would be once a day! I would eat whole meals and not go the toilet for a week! Docs said it was okay, perfectly normal and gave me Fybogel. I write a lot and used to be good at it but now i'm stilted and when I started college I couldn't absorb anything like I used to. Then there's the puffiness in my face, my hair is like wire, I look really bad and I feel like I should be out enjoying my youth but unfortunately I can't. How do I feel now? Not good, but I haven't felt good for a long time - I feel puffy, anxious and out of shape. I'm under the care of a thryoid specialist who is frequently mentioned here but he lives in another City so seeing him means getting coach tickets and a hotel room, so it's not frequent. Someone mentioned that it usual for people to have these symptoms after taking antidepressants, can I ask you, what does it mean? I stopped the drug 3 years ago and even though I feel better/side effects have improved, I still feel bad, have you heard it's irreversible? (Yeah this is what a less edited message of mine looks like....and there was more!) Thanks guys, you've been really kind xxx > > Hi Honey > > > > > I'm new to the board and just wanted to say hi and inroduce myself. > > Welcome aboard and I hope you will get the support and help you so obviously need. > > I'm 21 and 3 years ago I was put on an antidepressant which > kickstarted this whole mess. > > A diagnosis of depression is too easily made - and this is usually because doctors do not understand the problems caused through being hypothyroid, or having low adrenal reserve. I wish they would realise how much anguish they cause to millions of patients throughout the world with their incorrect diagnosis. > > Everything has changed, my appearence, my confidence, my creativity - > I feel like someone has squeezed out all the juice and left me with > pulp. I have most symptoms of hypothyroidism and now I look and feel > as if I've aged 20 years. > > Do you also have the 'signs' of hypothyroidism. Go to our website www.tpa-uk.org.uk and click on 'Hypothyroidism' in the Menu and in the drop down Menu click on 'Symptoms' and 'Signs'. Check these out against what you are sufferingnd showing and make a list of both of these. > > My levels are subclinical and I've spent a > lot of money so far looking for a solution. I saw the a private > consultant who started me on Thyroxine and Tetroxin last summer and > up until a few months ago I was on a dose of 60mcg of the latter and > 250mcg of the prior. I was feeling ok, a few things improved like my > constipation and the brain fog but when i had my bloods they came > back really abnormal so I'm down to just 60mcg Tetroxin. > > That is a high dose. Can you post your last blood results. We need your TSH, Free T4, Free T3 and also, have you been tested to see whether you have antibodies to your thyroid. This will tell you whether you have Hashimoto's disease. Antibodies gradually destroy your thyroid gland so you are unable to secrete the thyroid hormones your body needs. The treatment is the same as any other cause of hypothyroidism, but you will probably have other autoimmune problems. Has any member of your family got autoimmune diseases - or hypothyroidism? Did your Doctor only reduce your medication because of your blood results, didn't he consider that you felt OK on that previous dose? > > My plan had been to take more and more stuff until I felt better but > know I'm worried about stuff like osteoporosis etc and so is my GP! > > There is actually no evidence that taking high doses of thyroxine causes osteoporis. Did your GP suggest a bone scan. He would have his mind set at rest (and so would you) if this was arranged. > > > It's fuuny though because technically I was really hyper and yet I > didn't feel it at all; as someone who has had panic attacks and > suffers with anxiety I would know instantly if something was making > me on edge but I felt more fine than usual and certainly wasn't > bouncing off the walls. > > How long have you been on just 60mcgs Tertroxin? You don't mention how you are feeling right now. > > How hard this all is, everything else pales > in comparison; my life is on hold until I can resolve this but what > i'm stuck with it? I'm so scared. My next step is to get an adrenal > test, candida test, reverse t3 test and perhaps start taking some > liquid Iron as my ferritin is low which could be hindering things. I > can't even let myself think about what I'll do if none of these work. > > If, after testing, it is found that you do suffer with low adrenal reserve, you would need to take adrenal supplements to boost your adrenals. You would have to stop your 60 mcgs Tertroxin for a couple of weeks while you do this as your adrenals would not be able to cope with thyroid hormone replacement and adrenal boosting at the same time. You are young, and your adrenals may be OK, but wait and see on this one, and the same with Candida (if you test positive). We will look into that issue at the time you have your results. Can you tell us what your ferritin level was that made you decide you needed liquid iron. If you do need it, remember never to take iron at the same time as your thyroid hormone replacement or later. You should take it at least 3 to 4 hours away as iron stops the thyroid hormones from being utlised. > > Does it ever get better or do you just make do? > > It does, but it can be a long road to travel. Hopefully, we have lots of information in the FILES section of this forum and also the LINKS, and also lots of information on the website. Read as much as you can and understand the connections between all the different illnesses that go hand in hand with hypothyroidism and how we need to eliminate these first. Anything you don't understand, just shout, somebody will be along to help you. Be assured though, there is light at the end of the tunnel. > > It's a comfort to be in the presence of all of you, thanks for > letting me share xxxx > > This is what we are here for. Good luck. > > Sheila > > > > > > > > -------------------------------------------------------------------- ---------- > > > No virus found in this incoming message. > Checked by AVG. > Version: 7.5.524 / Virus Database: 269.23.5/1400 - Release Date: 27/04/2008 09:39 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Hi Honey, FROM YOUR LAST MESSAGE: Everything has changed, my appearence, my confidence, my creativity - I feel like someone has squeezed out all the juice and left me with pulp. I KNOW FOR A FACT THAT THIS CAN HAPPEN WITH ANTIDEPRESSANT USE, BUT THIS CAN ALSO HAPPEN WITH HYPOTHYROIDISM Someone mentioned that it usual for people to have these symptoms after taking antidepressants, can I ask you, what does it mean? I stopped the drug 3 years ago and even though I feel better/side effects have improved, I still feel bad, have you heard it's irreversible? MY RESPONSE: I thought that you were still using antidepressants, but I obviously got that wrong. I know that some antidepressants are prescribed specifically to help with anxiety, so that is why I made a reference to antidepressants and anxiety. I also know for a fact they can sometimes cause the symptoms that you mentioned & that other 'non drug' cures are available, especially for anxiety. No, I haven't heard that the side effects are irreversible, but I haven't really looked into that side of things so I don't really know. YOU WROTE: My latest thyroid function tests are below: > > TSH - *<0.01 mIU/L 0.27 - 4.20 > FT4 - *44.9 pmol/l 12.0 - 22.0 > FT3 - *13.7 pmol/L 4.0 - 6.8 MY RESPONSE: Your levels for free T4 and free T3 seem REALLY HIGH. My free T4 and free T3 levels have always been on the lower side of things, so I'll leave it to others with more knowledge about high levels to comment. I might have got this wrong, but have you only had two thyroid function tests done? It is important to have tests done more regularly than that, especially if your levels haven't stabilised. I know that you mentioned that finances are a problem, however I really think that even if you don't have other tests done, it would be worth having regular thyroid tests done. I'll leave it to others to comment on your other test results. P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 HI Honey Your Ferritin is too low and could be causing many of your problems. You need to ask your GP to prescribe some form of elemental iron because no amount of thyroid hormone replacement is going to be properly absorbed by your body. I would advise you get onto this sooner rather than later. Your ferritin should be up around 70 tol 90 for you to feel good. How can a range be so massive and you only 11 points above the very bottom of the range. Your doctor was correct in stopping your 250mcgs L-thyroxine with a Free T4 reading of 44.9. Are you sure this is a correct figure - and also a Free T3 of 13.7. With results like that, you probably should have stopped all your thyroid hormone replacement completely , as advised by your GP to bring everything back to normal again. You said previously your private consultant advised you to continue on your 60 mcgs T3. Are you taking this, or indeed, are you taking any thyroid hormone replacement right now or not? I think you should seriously consider the associated conditions that go along with hypothyroidism, all of which stop thyroid hormone replacement from working and all of which can cause many of the symptoms of hypothyroidism. 1) Low Adrenal Reserve 2) Candida Albicans' 3) Low Ferritin (causing hair loss also) 4) Mercury poisoning. (Do you have amalgam fillings?) 5) Vitamin D deficiency. You can read about these in our website www.tpa-uk.org.uk under 'Hypothyroidism's and then under 'Associated Conditions'. Please can you 'cut' your message before clicking 'Send'. This means leaving only part of the message you are responding to but deleting everything else. This is because those members who have opted to receive a Daily Digest, or to read directly from the forum website have to wade through loads of messages they have already read and it can make life a tad frustrating. You will soon get the hang of it. Sheila I had anemia when I was younger and my levels in the last few years have been low even though they were in range. Here's my latest:RED CELL COUNT *3.92 x10^12/L (3.95 - 5.15) Vitamin B12 473 pg/ml (197 - 866) BIOCHEMISTRY IRON 9.0 umol/L (6.6 - 26.0) T.I.B.C 63 umol/L (41 - 77) IRON SATURATION *14 % (20 - 55) FERRITIN 24 ug/L (13 - 150) My latest thyroid function tests are below:TSH - *<0.01 mIU/L 0.27 - 4.20FT4 - *44.9 pmol/l 12.0 - 22.0FT3 - *13.7 pmol/L 4.0 - 6.8 My private GP (not my specialist who put me on it) advised me to stop my meds. --- .. No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1402 - Release Date: 28/04/2008 13:29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 , It is pretty scary at first, but for me, learning everything I can has been so helpful! Our Chloe is five, and we have been doing this for two and a half years now. I think the most stressful times were actually the times before we knew it was ctoma and were in the tubes and drops phase! Chloe had a surgery five weeks ago where the doctor could not remove all the ctoma because of complications and had to go back on last week. I have also seen the affect on her surgeon when things aren't great. It's good to know they love our kids, too! The prosthesis that they are able to put in later really seems to do pretty well in place of the hearing bones, and it is not a scary surgery once you've been through a tympanoplasty or tympanomastoidectomy. I am glad you found this group so early! I went two years not knowing anyone that had a clue what ctoma is, and it was hard to talk to most people about it! Best wishes! On Tue, Jul 8, 2008 at 4:43 PM, neermom <neermom@...> wrote: I guess I'm posting to introduce why I've joined this group.My 4 1/2 year old was recently diagnosed with cholesteatoma. After having tonsils & adenoids removed, 3 sets of tubes in her right earand 4 in her left ear she had a CT scan that diagnosed the problem.Our pediatrician has been great and our old doctor seemed not tocare, just continued to put tubes in our babies ears. We switched doctors at the beginning of the year, he put in " T " tubesthinking with a different type of tube it would help. When the bodyquickly rejected the tubes he knew the problem. We had a CT scan done and without knowing anything aobut them I was able to seesomething was wrong.We had our first surgery June 23rd 2008. My poor little girl wasunder for 2 hours and 45 minutes. They tried to save most of the hearing bones, however were unable to.The doctor advised that this has been growing for years and is on theway to the brain. To make matters worse they weren't able to get allof it. They had to stop because her body wouldn't quit bleeding. So we have a follow up tomorrow and then we know that there areprobably at least 2 more surgeries to come.I didn't give the family the diagnosis until today, after reading myspouse and I decided we didn't want to scare everyone with all the readings out there.After these last 2 weeks I've thought about it and they need to havethe option to read about this disease. It's very frightning for meand right now I'm just trying to stay very strong for my daughter. My oldest had 2 sets of tubes and is now healthy with no earproblems.I know our doctor was shaken when he got into her ear and found itwas larger than expected, when he came out after surgery he was visibly shaken. He's become attached to our little girl.I know we are doing everything we can but it's still stressful whichI'm sure everyone of you feels the same.Anyway I saw this group out her today and thought it would be a good idea to have the support of other people dealing with the same thingwe are.thanks for listening------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 Hi , I'm new here too. My son had Tympanomastoidectomy on June 25th. Surgery lasted over 4 hrs so I know it is really hard waiting for the surgeon to come out. I hope your daughter is healing well & not having much discomfort. My son has done very well. I think his ear is numb or his nerves are damaged because he has felt almost no pain or discomfort. He didn't even flinch when they removed his stitches at his follow up. I have a ton of worry about this too, it is so hard to think of surgeries to come when they have just had surgery. My son has problems with his other ear too & his hearing loss is mod-severe. I'm also worried about the hearing loss, school etc. Is your dd due to start K this yr? If not, that gives you some more time to plan surgery since it takes them out of school for a little while, depending on recovery. Your dd's ctoma might have been congenital. They think ds's is also. He's 10 now ...it is shocking it can be there growing & not know it. ~Shell > > I guess I'm posting to introduce why I've joined this group. > > My 4 1/2 year old was recently diagnosed with cholesteatoma. After > having tonsils & adenoids removed, 3 sets of tubes in her right ear > and 4 in her left ear she had a CT scan that diagnosed the problem. > > Our pediatrician has been great and our old doctor seemed not to > care, just continued to put tubes in our babies ears. > > We switched doctors at the beginning of the year, he put in " T " tubes > thinking with a different type of tube it would help. When the body > quickly rejected the tubes he knew the problem. We had a CT scan > done and without knowing anything aobut them I was able to see > something was wrong. > > We had our first surgery June 23rd 2008. My poor little girl was > under for 2 hours and 45 minutes. They tried to save most of the > hearing bones, however were unable to. > > The doctor advised that this has been growing for years and is on the > way to the brain. To make matters worse they weren't able to get all > of it. They had to stop because her body wouldn't quit bleeding. > > So we have a follow up tomorrow and then we know that there are > probably at least 2 more surgeries to come. > > I didn't give the family the diagnosis until today, after reading my > spouse and I decided we didn't want to scare everyone with all the > readings out there. > > After these last 2 weeks I've thought about it and they need to have > the option to read about this disease. It's very frightning for me > and right now I'm just trying to stay very strong for my daughter. > > My oldest had 2 sets of tubes and is now healthy with no ear > problems. > > I know our doctor was shaken when he got into her ear and found it > was larger than expected, when he came out after surgery he was > visibly shaken. He's become attached to our little girl. > > I know we are doing everything we can but it's still stressful which > I'm sure everyone of you feels the same. > > Anyway I saw this group out her today and thought it would be a good > idea to have the support of other people dealing with the same thing > we are. > > thanks for listening > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 4 hours scares me. I honestly think if her body would have quit bleeding she would have been in there at least that long. We had our follow up on Thursday and he stated again that it's a very aggressive case and that it was more aggressive than he thought. The hearing bones were masking how aggressive it ws. Our first ENT would have never looked this far into it. I'm so glad we found our new doctor. We got a note the other day that our old doctor is retiring. Probably a good thing. My daughter will be in preschool again this year - 4 days a week. It will be nice that she's not in kindergarten yet, however I don't want her to end up behind at all! She is doing pretty good, there have been a couple of times her ear has been bumped and she's cried and then a few times she's right after surgery she was screaming and crying that her head hurt. Sad thing is It wasn't time for medicine yet so I just had to hold her and calm her. They put the stitches in that disolve so at least they don't have to mess with that. However I will say she had stitches on her eye brow a few montsh ago (hit it on the car door when my other daughter was shutting it), I was at school and my husband sent me a picture text message about it. Anyway he said she didn't even flintch to get the stitches and then didn't when they were taken out. Our ENT calls her is tuff patient. He said she's a strong girl, he's said on more than on occasion how much she amazes him. She does to all of us! I think I read on another email that your son is 10? Not sure if that's right or not, so I"m thinking 5th grade? I hope his healing and surgeries go well so that he doesn't miss much of school. I am very glad I found this group early on so that I can talk to other parents and people going through the same thing we are. It's been hard and I know it's only going to get harder. One thing our doctor said was when he came out to talk to us it was hard not only because of how bad it was but because my father in law wouldn't quit asking questions. He was trying to talk to us and the rest of them wouldn't stop talking! I am going to ask them for the next surgery to just let him talk to us and then we'll get question asked. Anyway I hope your son doesn't have too much pain and hope his recovery is going well. Take care From: kaz_pooh <kaz_pooh@...>Subject: Re: Introcholesteatoma Date: Friday, July 11, 2008, 6:31 PM Hi , I'm new here too. My son had Tympanomastoidectom y on June 25th.Surgery lasted over 4 hrs so I know it is really hard waiting for thesurgeon to come out. I hope your daughter is healing well & not having much discomfort. My son has done very well. I think his ear is numb or his nerves aredamaged because he has felt almost no pain or discomfort. He didn'teven flinch when they removed his stitches at his follow up. :oI have a ton of worry about this too, it is so hard to think ofsurgeries to come when they have just had surgery. My son has problemswith his other ear too & his hearing loss is mod-severe. I'm alsoworried about the hearing loss, school etc. Is your dd due to start K this yr? If not, that gives you some moretime to plan surgery since it takes them out of school for a littlewhile, depending on recovery.Your dd's ctoma might have been congenital. They think ds's is also.He's 10 now ...it is shocking it can be there growing & not know it.~Shell>> I guess I'm posting to introduce why I've joined this group. > > My 4 1/2 year old was recently diagnosed with cholesteatoma. After > having tonsils & adenoids removed, 3 sets of tubes in her right ear > and 4 in her left ear she had a CT scan that diagnosed the problem. > > Our pediatrician has been great and our old doctor seemed not to > care, just continued to put tubes in our babies ears. > > We switched doctors at the beginning of the year, he put in "T" tubes > thinking with a different type of tube it would help. When the body > quickly rejected the tubes he knew the problem. We had a CT scan > done and without knowing anything aobut them I was able to see > something was wrong. > > We had our first surgery June 23rd 2008. My poor little girl was > under for 2 hours and 45 minutes. They tried to save most of the > hearing bones, however were unable to. > > The doctor advised that this has been growing for years and is on the > way to the brain. To make matters worse they weren't able to get all > of it. They had to stop because her body wouldn't quit bleeding. > > So we have a follow up tomorrow and then we know that there are > probably at least 2 more surgeries to come. > > I didn't give the family the diagnosis until today, after reading my > spouse and I decided we didn't want to scare everyone with all the > readings out there. > > After these last 2 weeks I've thought about it and they need to have > the option to read about this disease. It's very frightning for me > and right now I'm just trying to stay very strong for my daughter. > > My oldest had 2 sets of tubes and is now healthy with no ear > problems. > > I know our doctor was shaken when he got into her ear and found it > was larger than expected, when he came out after surgery he was > visibly shaken. He's become attached to our little girl. > > I know we are doing everything we can but it's still stressful which > I'm sure everyone of you feels the same.> > Anyway I saw this group out her today and thought it would be a good > idea to have the support of other people dealing with the same thing > we are. > > thanks for listening> > > Quote Link to comment Share on other sites More sharing options...
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