Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Yeah, getting comfortable enough to sleep at night is awful! Luckily, I'm not working out in the job rat race right now, and so I go take little Mini-Naps during the day. I'm not sure why, but for some reason I am able to get more comfortable during the day and my mini-naps help makeup for the lost sleep at night! PJ RareBreeeze@... wrote:Diane, You are truly a remarkable mother!! I can't even begin to imagine everything you must be dealing with. I know how precious our children are to us and when something's wrong, we mothers will move heaven and earth for them. I have a sister in law that has Fibro, so I know a little of what you suffer with. She seems to have a very severe case and is in constant pain. She can't even sleep lying in her bed - she sleeps in a recliner part of the night and paces the floor the rest of the night and is just miserable. She's on a lot of pain medication and most of the time that doesn't even work. My prayers are with you girl! Hugs, In a message dated 10/29/03 8:52:04 PM Central Standard Time, SNAKpackmomma@... writes: > LOL! Thanks, PJ! Most of the time I'm pretty positive, just some days are > harder than others as I'm sure you can all relate to! My fibromyalgia goes > in > flares, I always ache that goes without saying, but sometimes it's worse > than > other times. I find that usually the worst pain and discomfort and fatigue > comes > right after I've gotten my son through a crisis. I know, stress = flare up, > which is another reason why I joined this group! ) I do think that in > general > I am handling things okay, at least I'm not certifiably insane yet so that's > > always a plus! Mostly I pray every day that the Lord not only gives me His > strength but also His joy and His peace. By the way, there is no way I can > handle > all of this, so I finally figured out that God only gives me what HE can > handle. I guess I've learned that there comes a time when you have to just > turn > everything over to Him and let it go. Kody's had the asthma attacks like > your > son. It is horrifyingly scary. I am so happy to hear that your son is doing > so > well now. That really is awesome! Kody's main troubles are his immune > deficiencies, he isn't able to fight bacterial infections. He's had more > infections than > I can count, including I think about 8 bouts of pneumonia, osteomylitis, and > > sepsis. His ear, sinus, and eye infections are never ending ( and I mean > that > very literally). He does get IV gammaglobulin (basically donated antibodies > in > lay terms) every 3 weeks, it's a huge benefit for him as it's cut down on > the > life threatening infections greatly. But since we spend the entire day at > the > hospital those days it is stressful (fibro wise it's really hard for me to > sit there that long!). I think once you have a child with serious stuff > happen > it really focuses your priorities. I think that is what keeps me grounded, I > > know what is important in life!!! Thanks for the welcome!!! > > > Diane, Mom to Kody, age 7, precious and precocious who has Di > Syndrome, > Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe > cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age > 9 (she > happens to also be Dyslexic), and wife/soulmate to for 10 years. > check out my website: www.geocities.com/schmidtzoo/SNAK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Don't you find that when children have some handicaps of any kind -- illness or whatever -- that sometimes they are the sweetest, most wonderful, precious kids and have a great sense of humor?! I think that God must have done that for the parents, as well as the kids! PJ SNAKpackmomma@... wrote:In a message dated 10/29/2003 10:02:57 PM Eastern Standard Time, RareBreeeze@... writes: I have a sister in law that has Fibro, so I know a little of what you suffer with. She seems to have a very severe case and is in constant pain. She can't even sleep lying in her bed - she sleeps in a recliner part of the night and paces the floor the rest of the night and is just miserable. She's on a lot of pain medication and most of the time that doesn't even work. My prayers are with you girl! Thanks . I am like your sister in law alot. I bought a featherbed and that helps a whole lot. Another friend of mine with fibro says that a sheepskin rug on the bed helps too. Personally I couldn't afford a sheepskin so I bought the featherbed, the biggest thickest one I could find! And it really does help. I also have restless leg syndrome (I think that is part of fibro) and when it is really bad, I'll take flexeral for it but I hate taking it because it makes me feel so drugged and I'm scared that I won't wake up or be thinking clearly if my son needs me. And I don't think I'm an amazing mom, I just do what I have to, it's my kids that are amazing! All of them are funny kids with great senses of humor, even Kody who has a tendency to say the darndest things when you least expect it! They keep me laughing! Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome, Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9 (she happens to also be Dyslexic), and wife/soulmate to for 10 years. check out my website: www.geocities.com/schmidtzoo/SNAK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Don't you find that when children have some handicaps of any kind -- illness or whatever -- that sometimes they are the sweetest, most wonderful, precious kids and have a great sense of humor?! I think that God must have done that for the parents, as well as the kids! PJ SNAKpackmomma@... wrote:In a message dated 10/29/2003 10:02:57 PM Eastern Standard Time, RareBreeeze@... writes: I have a sister in law that has Fibro, so I know a little of what you suffer with. She seems to have a very severe case and is in constant pain. She can't even sleep lying in her bed - she sleeps in a recliner part of the night and paces the floor the rest of the night and is just miserable. She's on a lot of pain medication and most of the time that doesn't even work. My prayers are with you girl! Thanks . I am like your sister in law alot. I bought a featherbed and that helps a whole lot. Another friend of mine with fibro says that a sheepskin rug on the bed helps too. Personally I couldn't afford a sheepskin so I bought the featherbed, the biggest thickest one I could find! And it really does help. I also have restless leg syndrome (I think that is part of fibro) and when it is really bad, I'll take flexeral for it but I hate taking it because it makes me feel so drugged and I'm scared that I won't wake up or be thinking clearly if my son needs me. And I don't think I'm an amazing mom, I just do what I have to, it's my kids that are amazing! All of them are funny kids with great senses of humor, even Kody who has a tendency to say the darndest things when you least expect it! They keep me laughing! Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome, Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9 (she happens to also be Dyslexic), and wife/soulmate to for 10 years. check out my website: www.geocities.com/schmidtzoo/SNAK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 PJ and Diane, I agree - children that suffer any kind of hardship seem to have been doubly blessed and it always seems like we can learn so much from them! And Diane - you have a GREAT attitude. You are like music to my soul. Bless you! All you guys are such a blessing to me - what a special group of people! just getting mushy...lol > In a message dated 10/30/2003 11:37:51 AM Eastern Standard Time, > mollyann365@y... writes: > Don't you find that when children have some handicaps of any kind -- illness > or whatever -- that sometimes they are the sweetest, most wonderful, precious > kids and have a great sense of humor?! I think that God must have done that > for the parents, as well as the kids! PJ > YOu know what, that is really true. Obviously I've met lots of parents and > kids iwth special needs and the majority of them are so funny and a delight to > be around. I'm sure it is God's way of helping you cope! > > > > Diane > Life may not be the party we hoped for, but while we are here we might as > well dance! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 PJ and Diane, I agree - children that suffer any kind of hardship seem to have been doubly blessed and it always seems like we can learn so much from them! And Diane - you have a GREAT attitude. You are like music to my soul. Bless you! All you guys are such a blessing to me - what a special group of people! just getting mushy...lol > In a message dated 10/30/2003 11:37:51 AM Eastern Standard Time, > mollyann365@y... writes: > Don't you find that when children have some handicaps of any kind -- illness > or whatever -- that sometimes they are the sweetest, most wonderful, precious > kids and have a great sense of humor?! I think that God must have done that > for the parents, as well as the kids! PJ > YOu know what, that is really true. Obviously I've met lots of parents and > kids iwth special needs and the majority of them are so funny and a delight to > be around. I'm sure it is God's way of helping you cope! > > > > Diane > Life may not be the party we hoped for, but while we are here we might as > well dance! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 That's okay. People are allowed to be mushy around here, as I wipe a tear!! PJ wrote:PJ and Diane, I agree - children that suffer any kind of hardship seem to have been doubly blessed and it always seems like we can learn so much from them! And Diane - you have a GREAT attitude. You are like music to my soul. Bless you! All you guys are such a blessing to me - what a special group of people! just getting mushy...lol > In a message dated 10/30/2003 11:37:51 AM Eastern Standard Time, > mollyann365@y... writes: > Don't you find that when children have some handicaps of any kind -- illness > or whatever -- that sometimes they are the sweetest, most wonderful, precious > kids and have a great sense of humor?! I think that God must have done that > for the parents, as well as the kids! PJ > YOu know what, that is really true. Obviously I've met lots of parents and > kids iwth special needs and the majority of them are so funny and a delight to > be around. I'm sure it is God's way of helping you cope! > > > > Diane > Life may not be the party we hoped for, but while we are here we might as > well dance! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Carla From what I understand fever seizures are very common, I don't think they have anything to do with speech or other delays. They have not been able to pin point Haley's seizures. She didn't have a fever with either of them. That's why she had the MRI and EEG's. They didn't find any abnormalities. Thanks for the welcome its nice to have others who understand. Sandy Haley's Mom > > Hello > > > > I'm Sandy mom to Dennis 15yrs NT, Haley 32mths Dx ASD one month > ago. > > Haley had two seizures before she was one. Was on phenobarbital > for a > > year. Was progressing nicely until she hit 20mths. Her speech was > > dropping off quickly. She has had 2 EEGs, an MRI, several blood > test > > and urine test to rule out any metabolic issues. She is in speech > > therapy twice a week and was just approved for 1-on-1 therapy as > > well. She is making great improvements gaining back some words, > > getting new ones, and singing. She is a toy sorter, toe-walker, > arm > > flapping, lover. She will give the best hugs, on her conditions. > > Thank you for being here, I am still very new at all of this. I'm > > trying to understand Haley's world, it's difficult but fascinating > > all at once. > > Sandy Haley's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Well, that explains the brush-off...lol!! I guess I am just looking for an explanation, can't seem to find one at this point! It really deos make you wonder about seizures, and the tests finding no abonormalties. Neither one of mine have had an MRI or EEG! Carla > > > Hello > > > > > > I'm Sandy mom to Dennis 15yrs NT, Haley 32mths Dx ASD one month > > ago. > > > Haley had two seizures before she was one. Was on phenobarbital > > for a > > > year. Was progressing nicely until she hit 20mths. Her speech was > > > dropping off quickly. She has had 2 EEGs, an MRI, several blood > > test > > > and urine test to rule out any metabolic issues. She is in speech > > > therapy twice a week and was just approved for 1-on-1 therapy as > > > well. She is making great improvements gaining back some words, > > > getting new ones, and singing. She is a toy sorter, toe- walker, > > arm > > > flapping, lover. She will give the best hugs, on her conditions. > > > Thank you for being here, I am still very new at all of this. I'm > > > trying to understand Haley's world, it's difficult but > fascinating > > > all at once. > > > Sandy Haley's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Thank you Tracey. It's great having somewhere to go for understanding. Sandy Haley's mom > Hi Sandy > Welcome to the group. My name is Tracey and my youngest daughter Skylar, age 11, was diagnosed autistic at age 3. She too was a toe- walker and toy sorter. Sky is in a regular Grade 6 classroom with a full time EA. This is a wonderful group. There are many helpful people here. It is a gret place to get support, advice or just vent when you are having a bad day. Its good to have you with us. > > Tracey > New to Group > > > Hello > > I'm Sandy mom to Dennis 15yrs NT, Haley 32mths Dx ASD one month ago. > Haley had two seizures before she was one. Was on phenobarbital for a > year. Was progressing nicely until she hit 20mths. Her speech was > dropping off quickly. She has had 2 EEGs, an MRI, several blood test > and urine test to rule out any metabolic issues. She is in speech > therapy twice a week and was just approved for 1-on-1 therapy as > well. She is making great improvements gaining back some words, > getting new ones, and singing. She is a toy sorter, toe-walker, arm > flapping, lover. She will give the best hugs, on her conditions. > Thank you for being here, I am still very new at all of this. I'm > trying to understand Haley's world, it's difficult but fascinating > all at once. > Sandy Haley's Mom > > > > Autism_in_Girls-subscribe > ------------------------ > Autism_in_Girls-unsubscribe > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 The reason they did the MRI & EEG's is because there was no fever. They still ask me if she has seizures with fever. We don't know why she had the seizures or if they are linked to her dx.They explain it as a fluke. Doctors don't know as much as they would like you to think. Sandy > > > > Hello > > > > > > > > I'm Sandy mom to Dennis 15yrs NT, Haley 32mths Dx ASD one > month > > > ago. > > > > Haley had two seizures before she was one. Was on > phenobarbital > > > for a > > > > year. Was progressing nicely until she hit 20mths. Her speech > was > > > > dropping off quickly. She has had 2 EEGs, an MRI, several > blood > > > test > > > > and urine test to rule out any metabolic issues. She is in > speech > > > > therapy twice a week and was just approved for 1-on-1 therapy > as > > > > well. She is making great improvements gaining back some > words, > > > > getting new ones, and singing. She is a toy sorter, toe- > walker, > > > arm > > > > flapping, lover. She will give the best hugs, on her > conditions. > > > > Thank you for being here, I am still very new at all of this. > I'm > > > > trying to understand Haley's world, it's difficult but > > fascinating > > > > all at once. > > > > Sandy Haley's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 .....and don't forget Juli and (: Re: Re: New to Group > Now we will all be confused too many penny, pennies from michigan, too many > abbeys, and ow two kassi's and a few skys here? > Sondra > > > > > Autism_in_Girls-subscribe > ------------------------ > Autism_in_Girls-unsubscribe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 I won't get into all my labs right now (she says they are great), but I > will say that at this point I feel worse than I have ever felt in my > life--horrible fatigue, brain fog, aching joints, etc. Hey Robin Welcome, I feel all of things u have mentioned and more so.. You have come to the right place, the group is great for learning and support! I did the same thing, lurked and read for a few weeks before I posted also! hehehe I took their advice and had my own tests run from USAHEALTHCHECK.com, it was great to take that part into my own hands..THANKS to this Group! Now I just have to make an appointment and go to ille to the doctor. There are alot of very knowlegeable people here. I Love my Comp. ,,mostly with what this group has taught me, its not so easy teaching the people in my life about this disease, or rather let them believe I'm not imaging these feellings..lol I'm not a go go go type of person right now..this too shall pass Roxanne Lipan TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Robin, You may have a pituitary tumor - I do too. Growth Hormone Deficiency is only from the Pituitary Gland is only from a disfunction there. I have MRI's at least yearly to check the status of my tumor - they area a piece of cake - noisey but no big deal - I usually fall asleep during them. Don't worry, but you do need to find out about them. Best thing to do, like here is find a support group. Head over to MSN groups - there are two groups - Pituitary Chat and Pituitary Tumor. Post there for Growth Hormone Deficiency - Say Hi to Minnie - she's a Moderate over there (and local). My handle there is "Itsthepits2" If you find you do have a pit tumor - you need to see a pituitary tumor specialist. Minnie can tell you if who you are seeing is or not - I do not recognize her, she may be. There are several types of Pituitary Tumors. Growth Hormone helps - but it is delicate to dose - have to start slow and easy from what I've heard and it's EXPENSIVE. If you can't find the groups let me know and I'll sent the links, but you need to educate yourself because the docs don't always tell you what you'll need to know. MD has a good Pituitary Center. There are only about 8 pituitary centers in the US. Janie New to group Hi, I am new to the group and have just been laying low and trying to learn from the posts for awhile. I am so impressed with all of the knowledge in the group, and how you are all taking the reins and responsibility for your own health care. Thanks for sharing all of it.I was diagnosed with Hashimoto's thyroiditis in May of last year; the endo prescribed Synthroid, which did nothing at all for my symptoms. I asked her to prescribe Armour (which my mother has been taking for 35 years, successfully, after benign tumors and a thyrodectomy,). She wouldn't but did change me to Levoxyl and Cytomel in November of last year.I won't get into all my labs right now (she says they are great), but I will say that at this point I feel worse than I have ever felt in my life--horrible fatigue, brain fog, aching joints, etc.--this has been going on in the extreme since about January. My endo did point out that a on test she ran for human growth hormone (Insulin-like Growth Factor I), the result was 43 L mg/mL, while the limits should be 101-267. She ordered an Arginine tolerance test, results of which were abnormal, and I am due to have an MRI Friday on my pituitary gland; both of these tests are what my doctor says my insurance (United Health Care) requires before she can prescribe Human Growth Hormone for me. She says that a pituitary tumor can cause the deficiency, as can some other conditions. She says that most people improve tremendously on the human growth hormone. I am, at this point, a bit worried about going on something like that, as I have read some horror stories. At this point, I guess I have a couple of questions. Do any of you have experience with my endocrinologist, Zaniewski-Singh (located near Northwest Medical Center just north of FM 1960 in Houston)? Her name doesn't appear on any of the lists (pro and con) that I have found so far. She seems caring and open (except about the Armour), and she did prescribe the Cytomel, but I am wondering if there is more I can do for myself, such as a new doctor. I am in the process of reading Shoman's book on living with autoimmune diseases, and I am going to try to come up with some kind of plan that will benefit me the most. Also, have any of you had any experience with human growth hormone deficiency? I am wondering if this is all tied in to autoimmune disease, and I need more than just having the human growth hormone replacement therapy thrown at me.Thanks in advance for any advice or help you can give me.Robin Schumacher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 -----Original Message----- Growth Hormone Deficiency is only from the Pituitary Gland is only from a disfunction there. Okay, my bad - that is an inaccurate statement - did somemore reading - but you need all your pituitary function tested before starting any treatment and you need to know positively whether or not there is a tumor and if so, what kind as taking GH can play a big part in the what the tumor will do if there is one there. As I suggested before the best place to go is the MSN support groups and ask there. The Arginine Tolerance test you had was a good test to have. But not a place to stop testing. Have you had any other tests? Cortisol, Prolactin, FSH, LH, TSH, ACTH, Somtendian C (spelled that wrong I know) Testosterone. It's important to make sure your doctor is a specialist with tumors not just an endo doc. Here's a fairly good site: http://www.pituitary.org/ Janie Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 > Robin, You may have a pituitary tumor...> Hi, Janie, thanks so much for both your messages. I think you may be right. I'm wondering, also, about the link, if there is one, between hypothyroidism and pituitary problems. I've had problems so many years with hypothyroid symptoms but doctors tellilng me that my levels are fine or " borderline " (they don't seem to use that term so much anymore). It wasn't until I saw Dr. Zaniewski that I was tested for the antibodies. I was so relieved to begin making some headway; thought this might take care of everything for me. But, no luck on feeling better. And now this suspected growth hormone deficiency... From a couple of things I've read I'm assuming that doctors have to be careful using the growth hormone if there is a pituitary tumor involved. Is there any reason they wouldn't just remove the tumor? Or is that opening up another can of worms? I do seem to have the symptoms of a growth hormone deficiency, but you know, ALL the autoimmune diseases I'm reading about seem to have a lot of the same symptoms in common. I will definitely check out the information sources you gave me. I am really tired of just taking all the diagnoses and information doctors give me as the bible on my problems without finding out more for myself. Not one of them has helped me feel better for years and years. As for other tests, at the same time as the growth factor test, Dr. Zaniewski did : LH 8.1 mIU/ml Limits - 0.0 - 7.63 FSH 6.3 mIU/ml Limits (depending on Female cycle anywhere from 2.5 -33.4 Testosterone, serum 38 ng/dl Limites 14-76 Testoserone, free 0.41 ng/dl Limits 0.10-0.85 %Free Testosterone 1.09 % Limits 0.50-1.80 Growth hormone,serum <0.1 ng/mL Limits 0.0 - 5.0 Prolactin 7.2 ng/mL Limits 2.8-29.2 I won't pretend to know what any of the above means! I do know that what she flagged for me was the Insuline-Line Growth Factor I that was 43 L ng/ML (Limits 101-267), and this is what made her send me to get the arginine tolerance test. I think she probably doesn't know what to do with me because she thinks I should be feeling great because my thyroid (T3 and T4) are both showing at high end of the normal levels the lab gives. Thanks again for your reply. Feels great to have someone to talk to. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Ideally, the dr would run a TSH, FreeT3, and FreeT4. However, I think if they run antibodies testing, like I recently had done with TPO antibodies....it shows that I am autoimmune thyroid disease, period. I'd already had a bout with hyperT/graves. If I'd known this 3 yrs ago, I'd have been expecting to go to thyroid replacement afterwards. I didn't know, because sometimes getting these guys to tests for antibodies it like pulling their teeth! lol. Or, you can actually start taking your underarm temp every morning, like Dr Broda suggests, which will show the possibility of low or high thyroid function. There is more to that, but I don't do it, so somebody else can chime in on it, but if you aren't feeling well, chances are, something is going on. It took me many years to get diagnosed. The TSH isn't reliable with autoimmune thyroid disease, but not many dr's will not test it. They love TSH! And it's my worst enemy. :-) SandyE~Houston Original Message: ----------------- From: natashabrandy sabrady@... Date: Mon, 18 Oct 2004 05:31:38 -0000 To: Texas_Thyroid_Groups Subject: New to group <html><body> <tt> <BR> <BR> I have an appointment tomorrow afternoon with Lucy Kormeier.<BR> I was diagnosed with fibromyalgia seven years ago. I have hot <BR> flashes all the time and can't stand the heat. I had headaches all <BR> the time and didn't sleep at all. I was tested for sleep apnea and <BR> got my cpap machine in July. I have used it at night and it did get <BR> rid of my headaches. But I had hoped it would give me back my " get <BR> up and go " . I am so tired all of the time. Just to make the bed <BR> exhausts me. I have dry red flakey skin, loss of hair, sensative to <BR> light and noise, tingling and numbness in hands and fingers, high <BR> blood pressure, carbo/sugar craving, carpel tunnel syndrome(this was <BR> diagnosed by dr.),irritable bowel syndrome, and more.<BR> <BR> My pcp did blood work and said my thyroid was fine.<BR> <BR> What tests should I ask Dr. Kormeier to run?<BR> <BR> Thanks for the help.<BR> <BR> <BR> <BR> <BR> <BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b>Yahoo! Groups Sponsor</b></font></td> </tr> <tr bgcolor=#FFFFFF> <td align=center width=470><table border=0 cellpadding=0 cellspacing=0> <tr> <td align=center><font face=arial size=-2>ADVERTISEMENT</font><br><a href= " http://us.ard.yahoo.com/SIG=12c4b3kmp/M=315388.5497957.6576270.3001176 /D=grphealth/S=1705094710:HM/EXP=1098163909/A=2372354/R=0/SIG=12id813k2/*htt ps://www.orchardbank.com/hcs/hcsapplication?pf=PLApply & media=EMYHNL40F21004S S " alt= " " ><img src= " http://us.a1.yimg.com/us.yimg.com/a/ho/household/f2_free2_300x250_def_0 904.gif " alt= " click here " width= " 300 " height= " 250 " border= " 0 " ></a></td></tr></table> </td> </tr> <tr><td><img alt= " " width=1 height=1 src= " http://us.adserver.yahoo.com/l?M=315388.5497957.6576270.3001176/D=grphe alth/S=:HM/A=2372354/rand=706982107 " ></td></tr> </table> <!-- |**|end egp html banner|**| --> <!-- |**|begin egp html banner|**| --> <br> <tt><hr width= " 500 " > <b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Ideally, the dr would run a TSH, FreeT3, and FreeT4. However, I think if they run antibodies testing, like I recently had done with TPO antibodies....it shows that I am autoimmune thyroid disease, period. I'd already had a bout with hyperT/graves. If I'd known this 3 yrs ago, I'd have been expecting to go to thyroid replacement afterwards. I didn't know, because sometimes getting these guys to tests for antibodies it like pulling their teeth! lol. Or, you can actually start taking your underarm temp every morning, like Dr Broda suggests, which will show the possibility of low or high thyroid function. There is more to that, but I don't do it, so somebody else can chime in on it, but if you aren't feeling well, chances are, something is going on. It took me many years to get diagnosed. The TSH isn't reliable with autoimmune thyroid disease, but not many dr's will not test it. They love TSH! And it's my worst enemy. :-) SandyE~Houston Original Message: ----------------- From: natashabrandy sabrady@... Date: Mon, 18 Oct 2004 05:31:38 -0000 To: Texas_Thyroid_Groups Subject: New to group <html><body> <tt> <BR> <BR> I have an appointment tomorrow afternoon with Lucy Kormeier.<BR> I was diagnosed with fibromyalgia seven years ago. I have hot <BR> flashes all the time and can't stand the heat. I had headaches all <BR> the time and didn't sleep at all. I was tested for sleep apnea and <BR> got my cpap machine in July. I have used it at night and it did get <BR> rid of my headaches. But I had hoped it would give me back my " get <BR> up and go " . I am so tired all of the time. Just to make the bed <BR> exhausts me. I have dry red flakey skin, loss of hair, sensative to <BR> light and noise, tingling and numbness in hands and fingers, high <BR> blood pressure, carbo/sugar craving, carpel tunnel syndrome(this was <BR> diagnosed by dr.),irritable bowel syndrome, and more.<BR> <BR> My pcp did blood work and said my thyroid was fine.<BR> <BR> What tests should I ask Dr. Kormeier to run?<BR> <BR> Thanks for the help.<BR> <BR> <BR> <BR> <BR> <BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b>Yahoo! Groups Sponsor</b></font></td> </tr> <tr bgcolor=#FFFFFF> <td align=center width=470><table border=0 cellpadding=0 cellspacing=0> <tr> <td align=center><font face=arial size=-2>ADVERTISEMENT</font><br><a href= " http://us.ard.yahoo.com/SIG=12c4b3kmp/M=315388.5497957.6576270.3001176 /D=grphealth/S=1705094710:HM/EXP=1098163909/A=2372354/R=0/SIG=12id813k2/*htt ps://www.orchardbank.com/hcs/hcsapplication?pf=PLApply & media=EMYHNL40F21004S S " alt= " " ><img src= " http://us.a1.yimg.com/us.yimg.com/a/ho/household/f2_free2_300x250_def_0 904.gif " alt= " click here " width= " 300 " height= " 250 " border= " 0 " ></a></td></tr></table> </td> </tr> <tr><td><img alt= " " width=1 height=1 src= " http://us.adserver.yahoo.com/l?M=315388.5497957.6576270.3001176/D=grphe alth/S=:HM/A=2372354/rand=706982107 " ></td></tr> </table> <!-- |**|end egp html banner|**| --> <!-- |**|begin egp html banner|**| --> <br> <tt><hr width= " 500 " > <b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 All your symptoms sound to me to be thyroid related. Do you have the lab reports, with your results on them? Always get a copy of your lab reports. Bring them here and we can look them over with you. Have you had antibodies testing for thyroid? I read where you had the doc run the Free T3 and Free T4 run. New to group > > I have an appointment tomorrow afternoon with Lucy Kormeier. > I was diagnosed with fibromyalgia seven years ago. I have hot > flashes all the time and can't stand the heat. I had headaches all > the time and didn't sleep at all. I was tested for sleep apnea and > got my cpap machine in July. I have used it at night and it did get > rid of my headaches. But I had hoped it would give me back my " get > up and go " . I am so tired all of the time. Just to make the bed > exhausts me. I have dry red flakey skin, loss of hair, sensative to > light and noise, tingling and numbness in hands and fingers, high > blood pressure, carbo/sugar craving, carpel tunnel syndrome(this was > diagnosed by dr.),irritable bowel syndrome, and more. > > My pcp did blood work and said my thyroid was fine. > > What tests should I ask Dr. Kormeier to run? > > Thanks for the help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 All your symptoms sound to me to be thyroid related. Do you have the lab reports, with your results on them? Always get a copy of your lab reports. Bring them here and we can look them over with you. Have you had antibodies testing for thyroid? I read where you had the doc run the Free T3 and Free T4 run. New to group > > I have an appointment tomorrow afternoon with Lucy Kormeier. > I was diagnosed with fibromyalgia seven years ago. I have hot > flashes all the time and can't stand the heat. I had headaches all > the time and didn't sleep at all. I was tested for sleep apnea and > got my cpap machine in July. I have used it at night and it did get > rid of my headaches. But I had hoped it would give me back my " get > up and go " . I am so tired all of the time. Just to make the bed > exhausts me. I have dry red flakey skin, loss of hair, sensative to > light and noise, tingling and numbness in hands and fingers, high > blood pressure, carbo/sugar craving, carpel tunnel syndrome(this was > diagnosed by dr.),irritable bowel syndrome, and more. > > My pcp did blood work and said my thyroid was fine. > > What tests should I ask Dr. Kormeier to run? > > Thanks for the help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 It will be 10 days before I get the results from my FreeT3, FreeT4, 24 hr urine test, TSH that she ordered. I don't know if she ordered an antibodies thyroid test. It was like pulling teeth just to get her to run thoses tests. You would think she would like to run a lot of tests on a new patient. I felt like she was just not interested in my problems. When I went to Lucy Kormeier I was also complaining about hot flashes, and wanted tests done to see what else I might need, pills, patch, etc. for menopause. She told me that she doesn't do that, I would have to go to my GYN for those. Why couldn't she have ordered the tests and than I could have them when I saw my GYN? When you are testing for problems with hormones shouldn't you test all of them? Wouldn't it have helped with her diagnosis? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi, : I just got back from vacation a couple of days ago and am going through the posts in order, so I'm not sure if anybody has answered you about the Synthroid thing. The EXACT same thing happened to me when I first got diagnosed with hypo and started Synthroid. I was so crabby I couldn't stand myself! My doctors at the time did not believe that Synthroid could cause that (I know better now) and they tried me on several different anti-depressants, thinking that it must be me. I'm on Armour now and feeling much better. Welcome to the group! > I was taking Synthroid, but stopped because it made me > EXTREMELY moody! > > Thanks for welcoming me to the group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi, : I just got back from vacation a couple of days ago and am going through the posts in order, so I'm not sure if anybody has answered you about the Synthroid thing. The EXACT same thing happened to me when I first got diagnosed with hypo and started Synthroid. I was so crabby I couldn't stand myself! My doctors at the time did not believe that Synthroid could cause that (I know better now) and they tried me on several different anti-depressants, thinking that it must be me. I'm on Armour now and feeling much better. Welcome to the group! > I was taking Synthroid, but stopped because it made me > EXTREMELY moody! > > Thanks for welcoming me to the group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi, : I just got back from vacation a couple of days ago and am going through the posts in order, so I'm not sure if anybody has answered you about the Synthroid thing. The EXACT same thing happened to me when I first got diagnosed with hypo and started Synthroid. I was so crabby I couldn't stand myself! My doctors at the time did not believe that Synthroid could cause that (I know better now) and they tried me on several different anti-depressants, thinking that it must be me. I'm on Armour now and feeling much better. Welcome to the group! > I was taking Synthroid, but stopped because it made me > EXTREMELY moody! > > Thanks for welcoming me to the group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 My heart goes out to you. Had your daughter been diagnosed with a thyroid problem prior to this? I lost my Mother many years ago to the opposite type problem,. hypothyroid and the depression it causes. She committed suicide at 35 years old. This disease is a killer just usually it is a long drawn out thing. YOURSELF is who needs care too! You say you have been on & off thyroid meds for two years? Once diagnosed with thyroid disease, you always have it. You need to take care of yourself to care for your grandchild. Hugs from the heart for your daughter. *Artistic Grooming * Hurricane, WVFat cat? Diabetes? Listowner for overweight or hypothyroid catshttp://groups.yahoo.com/group/hypokitties/ No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 My heart goes out to you. Had your daughter been diagnosed with a thyroid problem prior to this? I lost my Mother many years ago to the opposite type problem,. hypothyroid and the depression it causes. She committed suicide at 35 years old. This disease is a killer just usually it is a long drawn out thing. YOURSELF is who needs care too! You say you have been on & off thyroid meds for two years? Once diagnosed with thyroid disease, you always have it. You need to take care of yourself to care for your grandchild. Hugs from the heart for your daughter. *Artistic Grooming * Hurricane, WVFat cat? Diabetes? Listowner for overweight or hypothyroid catshttp://groups.yahoo.com/group/hypokitties/ No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/2005 Quote Link to comment Share on other sites More sharing options...
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