Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Kathy my daughter is 13 also before when she was younger she complained of her back and legs hurting i did talk with her doctor they just said its growing pains until feb 2000 when she woke and couldnt walk then they thought at first it was lupus tests after tests then finally we was told she had connective tissue disease with poly jra what state do you live? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Kathy, Our 15 yr. old daughter Alyssa, started out the same way as your daughter. We went to our Ped. for a check on painful joints (knee,fingers). after many frustrating weeks we finally were sent to our local Children's Hospital. She was seeing the top guy in the Rheum. Dept. We too were told that " something is going on " . No diagnosis ever made. They told us that it was not JRA, not Lupus, not this and not that. She had a ANA of 160 and a positive rheumatiod facter. Finally after 1 1/2 yrs. of that we got a second opinion.The new Rheum. is fantastic. She immediatly started a very aggressive treatment plan and validated all that she had went through. Now our 2 yr. anniversary of when all this began is soon to be here. Alyssa spent her birthday rollerskating! She still has flares and still has struggles. Meds. everyday, etc... The difference is that we know what is going on. Don't take one Dr.s opinion. You know your child better than anyone. Keep looking until you find the answer. The sooner you can treat the better. Keep a journal of every symptom she has, even if you think it isn't related. Hang in there. Amy no diagnosis yet > Hi Everyone! I have a 13-yr-old daughter who complains of joint > pains in her fingers, elbows and ankles. She has a positive ANA with > a 1:640 titer, positive RA and IgG, but no swelling, inflammation, > redness. The ped.rheum I have taken her to (twice) says there > is " definitely something going on " , but hasn't found anything yet. > She is taking Naprosyn on a prn basis and it seems to help. Does > anyone have a similar story or any ideas? I'd really appreciate some > input. Thanks -- Kathy > > > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > To manage your subscription settings, visit: > subscribe/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 Hi Amy. Thanks for your reply. So did the second opinion confirm anything the first opinion ruled out? We live in Michigan and there are only a few ped rheum listed, all at Children's Hospital in Detroit which is 50+ miles away. Kym is managing okay, but I don't think her teachers understand how hard it is for her to write out her assignments sometimes. I wonder if she should get more exercise, she has never been very active. - Kathy --- foxkits3 <foxkits3@...> wrote: > Kathy, > Our 15 yr. old daughter Alyssa, started out the same > way as your daughter. > We went to our Ped. for a check on painful joints > (knee,fingers). after > many frustrating weeks we finally were sent to our > local Children's > Hospital. She was seeing the top guy in the Rheum. > Dept. We too were told > that " something is going on " . No diagnosis ever > made. They told us that it > was not JRA, not Lupus, not this and not that. She > had a ANA of 160 and a > positive rheumatiod facter. Finally after 1 1/2 > yrs. of that we got a > second opinion.The new Rheum. is fantastic. She > immediatly started a very > aggressive treatment plan and validated all that she > had went through. Now > our 2 yr. anniversary of when all this began is soon > to be here. Alyssa > spent her birthday rollerskating! > She still has flares and still has struggles. Meds. > everyday, etc... The > difference is that we know what is going on. Don't > take one Dr.s opinion. > You know your child better than anyone. Keep > looking until you find the > answer. The sooner you can treat the better. Keep > a journal of every > symptom she has, even if you think it isn't related. > Hang in there. > Amy > no diagnosis yet > > > > Hi Everyone! I have a 13-yr-old daughter who > complains of joint > > pains in her fingers, elbows and ankles. She has > a positive ANA with > > a 1:640 titer, positive RA and IgG, but no > swelling, inflammation, > > redness. The ped.rheum I have taken her to > (twice) says there > > is " definitely something going on " , but hasn't > found anything yet. > > She is taking Naprosyn on a prn basis and it seems > to help. Does > > anyone have a similar story or any ideas? I'd > really appreciate some > > input. Thanks -- Kathy > > > > > > > > For links to websites with JRA info please visit: > > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > To manage your subscription settings, visit: > > subscribe/ > > > > > > > ===== -- Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 Kathy, There is a pediatric rheumatologist at Univ of Michigan/Mott's Children's Hospital in Ann arbor. A lady I " know " via the internet takes her daughter there and is quite pleased with the care. I don't know if that's more convenient than Detroit for you, but might be a good place for a 2nd opinion if you need one. Liz Kathy Dominguez wrote: > > Hi Amy. Thanks for your reply. So did the second > opinion confirm anything the first opinion ruled out? > We live in Michigan and there are only a few ped rheum > listed, all at Children's Hospital in Detroit which is > 50+ miles away. Kym is managing okay, but I don't > think her teachers understand how hard it is for her > to write out her assignments sometimes. I wonder if > she should get more exercise, she has never been very > active. - Kathy > --- foxkits3 <foxkits3@...> wrote: > > Kathy, > > Our 15 yr. old daughter Alyssa, started out the same > > way as your daughter. > > We went to our Ped. for a check on painful joints > > (knee,fingers). after > > many frustrating weeks we finally were sent to our > > local Children's > > Hospital. She was seeing the top guy in the Rheum. > > Dept. We too were told > > that " something is going on " . No diagnosis ever > > made. They told us that it > > was not JRA, not Lupus, not this and not that. She > > had a ANA of 160 and a > > positive rheumatiod facter. Finally after 1 1/2 > > yrs. of that we got a > > second opinion.The new Rheum. is fantastic. She > > immediatly started a very > > aggressive treatment plan and validated all that she > > had went through. Now > > our 2 yr. anniversary of when all this began is soon > > to be here. Alyssa > > spent her birthday rollerskating! > > She still has flares and still has struggles. Meds. > > everyday, etc... The > > difference is that we know what is going on. Don't > > take one Dr.s opinion. > > You know your child better than anyone. Keep > > looking until you find the > > answer. The sooner you can treat the better. Keep > > a journal of every > > symptom she has, even if you think it isn't related. > > Hang in there. > > Amy > > no diagnosis yet > > > > > > > Hi Everyone! I have a 13-yr-old daughter who > > complains of joint > > > pains in her fingers, elbows and ankles. She has > > a positive ANA with > > > a 1:640 titer, positive RA and IgG, but no > > swelling, inflammation, > > > redness. The ped.rheum I have taken her to > > (twice) says there > > > is " definitely something going on " , but hasn't > > found anything yet. > > > She is taking Naprosyn on a prn basis and it seems > > to help. Does > > > anyone have a similar story or any ideas? I'd > > really appreciate some > > > input. Thanks -- Kathy > > > > > > > > > > > > For links to websites with JRA info please visit: > > > > > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > > > To manage your subscription settings, visit: > > > subscribe/ > > > > > > > > > > > > > > ===== > -- Kathy > > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > To manage your subscription settings, visit: > subscribe/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 Kathy, Yes, the 2nd. opinion confirmed what we had suspected. That it was indeed JRA. My grandmother has it too, (that guilt has hung on). It confirmed that it was polyartic. not systm. Also it confirmed that the sysmptoms were all related to the illness. We had been told that they were all singular. As for the teachers. Have you guys gone in and spoken with them all? We did and it make a world of difference. Alyssa does not want special treatment, but she is also realistic. Have you guys got a computer? See if some of her work can be done on it. Also if notes need to be taken in class, try a tape recorder. We got hooked up with some good stuff on school. Look up MSN.com, go to the Health section. It should be WEBMD. Type in Rheumatiod Arthritis. It should bring up information on just about everything. Also we have a purchased article that I would be more than happy to fax or mail to you. Let me know. Amy no diagnosis yet > > > > > > > Hi Everyone! I have a 13-yr-old daughter who > > complains of joint > > > pains in her fingers, elbows and ankles. She has > > a positive ANA with > > > a 1:640 titer, positive RA and IgG, but no > > swelling, inflammation, > > > redness. The ped.rheum I have taken her to > > (twice) says there > > > is " definitely something going on " , but hasn't > > found anything yet. > > > She is taking Naprosyn on a prn basis and it seems > > to help. Does > > > anyone have a similar story or any ideas? I'd > > really appreciate some > > > input. Thanks -- Kathy > > > > > > > > > > > > For links to websites with JRA info please visit: > > > > > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > > > To manage your subscription settings, visit: > > > subscribe/ > > > > > > > > > > > > > > > ===== > -- Kathy > > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > To manage your subscription settings, visit: > subscribe/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 hi kathy, kyms school is required by law to accomodate any special needs she may have. if she had a lot trouble writing out her assignments, then have to provide her with an alternative such as a typewriter, computer, or another person to write it out for her. dont let the teachers just tell her to " deal with it " , i got told that too many times and its wrong and illegal. go get em, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Hi all, I haven't had time to post for a few weeks, but I wanted to add that If you daughter has trouble with these things while at school then she should be referred, by you or a teacher or anyone, to whoever handles special ed services in your school district. Here in NYC it is CSE (committee for special education) and CPSE (committee on preschool special education-this one is for after a child ages out of EI, early intervention but is not yet school age of 5 years old) My middle daughter has related services while at school, PT, OT, speech and we will be adding play therapy, is nearly 4. She is part of a general ed class that has a team teaching approach. The class is integrated, both special ed and general ed. Has a special ed and a general ed teacher as well as 2 paraprofessionals. My older daughter is part of an integrated class and the special ed students in her class all have mild related needs such as speech, PT, OT. This is something not so new but if being fully implem,ented by the NYC BOE. But getting back...as for the writing assignments. The public schools must provide a way for her to accomplish her school work. Especially if a child has a special need, as for at home have you considered a software program such as " DragNSpeak " (sp?). She can 'answer' her homework assigments by speaking into a microphone that plugs into a port in your computer. This sooftware will learn her voice and then turn her speech into words that she can edit with a word processor then print out to bring to school. Back to lurking, > hi kathy, kyms school is required by law to accomodate any special needs she > may have. if she had a lot trouble writing out her assignments, then have > to provide her with an alternative such as a typewriter, computer, or > another person to write it out for her. dont let the teachers just tell her > to " deal with it " , i got told that too many times and its wrong and illegal. > go get em, brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Before the school is required to provide accomodations, your child has to be recognized as having a disability. The rheumatologist will need to provide a letter re the problems for this to happen. This is where having a 504 plan comes in if services (OT, PT, speech, special ed, etc) are not needed. If services, rather than just accomodations, are needed, then you must have an IEP. Your school should have all the info on these programs. If not, let us know. You can get a TON of info here!! Hendricks wrote: > > hi kathy, kyms school is required by law to accomodate any special needs she > may have. if she had a lot trouble writing out her assignments, then have > to provide her with an alternative such as a typewriter, computer, or > another person to write it out for her. dont let the teachers just tell her > to " deal with it " , i got told that too many times and its wrong and illegal. > go get em, brandy > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > To manage your subscription settings, visit: > subscribe/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Hi go to the school counseling office ask for a 504 plan and write down everything your child needs georgina i think has a check list write them down even if she dont need them now melissa is 8th grade and has to write ALOT she will wear wrist braces sometimes and writeing alot makes her hand swell its in her 504 for her to have extra time to write extra time to get to class extra time for work you HAVE to push the schools they just dont do it without a voice for the child ALSO call the arthritis foundation close to you and ask for pamplets on JRA this is great to hand out to teachers anything helps think about this your the childs voice DONT allow the school to step on her rights to get a good education this is YOUR right Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Kathy, Do you have a 504 plan or IEP set up for your daughter in school. If you don't I strongly advise you to get one ASAP for her. The 504 plan in the better one, because they most definitely have to meet her needs, but the IEP has some limitations. I went through that same problem with Zhondrese with the teachers, but because of the 504 plan they have to meet her every need even down to going to the bathroom with her. Her teachers needs to be educated on her medical condition too. I meet with all Drese's teachers and let them know what was going with her and her med. conditions. They now work really hard with me to make sure her needs are met. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Hi Liz and everyone else who responded: Thanks for the tip on the hospital in Ann Arbor. I'll be sure to check it out. Also thanks to everyone who responded to my call for help. I've gotten a lot of information so far and I feel better prepared to help Kym in every way I can. I'll keep in touch and let you know what we find out. - Kathy --- <smithfamilyzoo@...> wrote: > Kathy, > > There is a pediatric rheumatologist at Univ of > Michigan/Mott's > Children's Hospital in Ann arbor. A lady I " know " > via the internet takes > her daughter there and is quite pleased with the > care. I don't know if > that's more convenient than Detroit for you, but > might be a good place > for a 2nd opinion if you need one. > > Liz > > Kathy Dominguez wrote: > > > > Hi Amy. Thanks for your reply. So did the second > > opinion confirm anything the first opinion ruled > out? > > We live in Michigan and there are only a few ped > rheum > > listed, all at Children's Hospital in Detroit > which is > > 50+ miles away. Kym is managing okay, but I don't > > think her teachers understand how hard it is for > her > > to write out her assignments sometimes. I wonder > if > > she should get more exercise, she has never been > very > > active. - Kathy > > --- foxkits3 <foxkits3@...> wrote: > > > Kathy, > > > Our 15 yr. old daughter Alyssa, started out the > same > > > way as your daughter. > > > We went to our Ped. for a check on painful > joints > > > (knee,fingers). after > > > many frustrating weeks we finally were sent to > our > > > local Children's > > > Hospital. She was seeing the top guy in the > Rheum. > > > Dept. We too were told > > > that " something is going on " . No diagnosis ever > > > made. They told us that it > > > was not JRA, not Lupus, not this and not that. > She > > > had a ANA of 160 and a > > > positive rheumatiod facter. Finally after 1 1/2 > > > yrs. of that we got a > > > second opinion.The new Rheum. is fantastic. She > > > immediatly started a very > > > aggressive treatment plan and validated all that > she > > > had went through. Now > > > our 2 yr. anniversary of when all this began is > soon > > > to be here. Alyssa > > > spent her birthday rollerskating! > > > She still has flares and still has struggles. > Meds. > > > everyday, etc... The > > > difference is that we know what is going on. > Don't > > > take one Dr.s opinion. > > > You know your child better than anyone. Keep > > > looking until you find the > > > answer. The sooner you can treat the better. > Keep > > > a journal of every > > > symptom she has, even if you think it isn't > related. > > > Hang in there. > > > Amy > > > no diagnosis yet > > > > > > > > > > Hi Everyone! I have a 13-yr-old daughter who > > > complains of joint > > > > pains in her fingers, elbows and ankles. She > has > > > a positive ANA with > > > > a 1:640 titer, positive RA and IgG, but no > > > swelling, inflammation, > > > > redness. The ped.rheum I have taken her to > > > (twice) says there > > > > is " definitely something going on " , but hasn't > > > found anything yet. > > > > She is taking Naprosyn on a prn basis and it > seems > > > to help. Does > > > > anyone have a similar story or any ideas? I'd > > > really appreciate some > > > > input. Thanks -- Kathy > > > > > > > > > > > > > > > > For links to websites with JRA info please > visit: > > > > > > > > > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > > > > > To manage your subscription settings, visit: > > > > subscribe/ > > > > > > > > > > > > > > > > > > > > > ===== > > -- Kathy > > > > > > For links to websites with JRA info please visit: > > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > To manage your subscription settings, visit: > > subscribe/ > ===== -- Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Ywellen, Thanks for the info on 504 and IEP. Do I need a formal diagnosis from her doctor (when she finds one) or can I get something started now? - Kathy --- sweetpea200001@... wrote: > Kathy, > Do you have a 504 plan or IEP set up for your > daughter in school. If you > don't I strongly advise you to get one ASAP for her. > The 504 plan in the > better one, because they most definitely have to > meet her needs, but the IEP > has some limitations. I went through that same > problem with Zhondrese with > the teachers, but because of the 504 plan they have > to meet her every need > even down to going to the bathroom with her. Her > teachers needs to be > educated on her medical condition too. I meet with > all Drese's teachers and > let them know what was going with her and her med. > conditions. They now work > really hard with me to make sure her needs are met. > Ywellen > ===== -- Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 Kathy, it will good to have a letter from the dr. with what's going on with your daughter's medical condition. They will need something to go by as far as her health problem goes, but be sure the dr. states clearly her limitations. I don't know about your school system, but here they act very ignorant without the doctors orders. So, while you are getting the dr.'s orders go ahead and set up the meeting with the school. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2001 Report Share Posted February 2, 2001 Ywellen, thanks for the tip re: the Dr's note. I think that will help a lot, maybe she'll get more time to complete her assignments. Kym worries about being singled out though. She is already pretty small for her age, she looks like she is 8 even though she is 13. So she gets teased a lot at school. - Kathy --- sweetpea200001@... wrote: > Kathy, it will good to have a letter from the dr. > with what's going on with > your daughter's medical condition. They will need > something to go by as far > as her health problem goes, but be sure the dr. > states clearly her > limitations. I don't know about your school system, > but here they act very > ignorant without the doctors orders. So, while you > are getting the dr.'s > orders go ahead and set up the meeting with the > school. > Ywellen > > > [Non-text portions of this message have been > removed] > > ===== -- Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2001 Report Share Posted February 2, 2001 Kathy melissa is also 13 and feels the same about being singled out monday she had to use her crutches and she pitched a fit cause i told her she needed to use them at least 1 day and if she did good then tuesday she could put them away i think what the problem was is lunch having someone carry her tray and having someone carry her books she dont want to feel dependant or out of place but her friends do understand and help if they see she needs it at this age its hard they are going into TEEN age years peer pressure and then dealing with JRA feeling like a sore thumb but i encourage her alot and tell her alot that it doesnt matter how you look on the outside whats inside counts and your friends understand that but try makeing a 13 yr old see your point lolololol last year it didnt bother her as bad as it does this year though Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Kathy thats great Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Hi Deb, I'm sorry that you are having such a painful time. I would definately see a rheumatologist! He is the only one that can say whether or not you have RA. Many people with RA do not have a positive RF. If the meds don't seem to be helping ask your dr if he can give you comthing else. I used to take Ultram for pain and was recently switched to Ultracet - its a combo of Ultram & tylenol - its has helped even better than the ultram where I only have to take it 3x a day! There are other anti-inflammatories out there too, Mobic had helped for a while better than the others, but have been recently switched to Bextra now also. So ask your dr hopefully he will be able to help until you can see the specialist. Good Luck & God Bless, Barbara dtoms <dtoms@...> wrote: Hi everyone!My name is Deb Toms and I am 34 years old. I have suddenly found myselfoff of work and unable to do much of anything. My symptoms started inJanuary with a sore and stiff neck. My PCP said it was stress and toldme to take 800 mg ibuprofen (this did not help). About a month latermy knees were so stiff and painful upon awakening that I had difficultygetting down the stairs. Within a few days I noticed pain in mywrists,ankles and my chest as well. My appetite is very poor and I havelost 11 lbs in 3 weeks. I have had a low fever at times. Within a weekI couldn't get out of bed one morning. I went back to my PCP and theyordered some blood work. They tested me for Lupus and Lyme's Disease(both negative). My Ced Rate was 90 but my RF Factor was negative. Mydoctor is now convinced that I do not have RA. I am not as confident.My husband is a nurse and I have been looking through a lot of hisnursing books and discovered that 20 -25% of RA patients have a negativeRF factor. I have an appointment next week with a RA specialist andhope to know more after that but in the mean time, I would appreciateanyone's input.I work in a warehouse and work 12 hour shifts where I stand constantlyand lift heavy boxes. As I said before I am on Short Term Disabilityfor now and my joints are not as bad, but I have not done too much thepast week. My joints start to hurt more if I am on my feet for just afew hours. My PCP has me on Relafen and Ultram for pain but I am notsure they are working very well.Thanks for your help.Deb Toms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi Kimm, The all too common sad story. The infuriating thing is thyroid failure is staring your doc in the face and all he says is 'interesting'. The big problem is that once you have the tag of depressed than all else that is said tends to be ignored. Once the blood tests are in the 'normal' range then all the symptoms get ignored. It is perfectly possible to have normal TSH as your pituitary gets low too and then can't put out enough TSH to stimulate the thyroid to produce more thyroid hormone, it is when the thyroid fails to respond that the TSH should rise. You can try to ask for a trial of thyroxine 'to see if it helps' or better still ask for a referral to one of the docs 'who do' on the website list to try to get a diagnosis. If you have one autoimmune disease ( vitiligo) then you are more likely to get another ( hashimotos thyroiditis) you could ask to have antibodies tested as these tend to raise before enough of the thyroid is destroyed to cause the TSH to rise. Hello, I am Kim a 50yr old midwife. Currently into my second month off work due to OCD and stress. This was diagnosed recently and I have been started on Fluvoxamine for 'clinical depression and OCD'. Why do I think my thyroid is at fault?? Well because recently two of my four sisters, one older and one younger have been diagnosed with underactive thyroid. I have been told my TSH is normal and the lab has 'lost' the sample from last wednesday requesting, liver function, TSH and T4. So I went to my doc on monday 10th to get the results and she told me that I needed to go and get my blood taken again. This time I asked for T3 and antibodies as well as T4, didn't know about other stuff. I have been told my cholesterol is raised total=5.7 LDL is over 3. So this is my thought, I have one patch of white skin (OK I am white but I mean not much pigment) so ? vitiligo, which my daughter has, I have oral lichen planus and FSGS which is a autoimmune kidney disorder affecting the filters (glomeruli actually its called focal segmental glomerulosclerosis). I hope you are still with me....I am thinking, raised cholesterol, pre-existing autoimmune diseases x 3, depression with new diagnosis of OCD (obsessional compulsive disorder),afternoon fatigue- well fatigue full stop. Acid reflux, aches and pains, my periods stopped in August 04 age 46 10months, no further bleeding of any amount. Libido went that day too, I have constipation on and off, cold feet, weight gain following a period of illness despite eating less oh and I forgot - I forget everything, even if I was just told a name, its gone!! At work I feel I have forgotten everything, my nails have vertical ridges. Thats it folks! I may be a fraud, masquerading as depression/menopause/depression as thats what my GP thinks and the family history is 'interesting'. Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hello Kim - your story reminds me of mine! I was ill for at least 3 years with my GPs telling me I was depressed - it didnt matter what I said they had made their minds up that this was my diagnosis. Eventually I figured this out myself and then found TPA-UK, sent for the blood tests myself from NPTech - they were all in range TSH of 2.5 but the T3 and T4 were very low in the range (cost £33 and worth every penny!). When the results came back and were low Sheila advised that I did have hypoT so I took the results to the GP and insisted on a referral (she put her head on one side and said they are low but they are still normal!) but she agreed to refer me to an endocrinologist of my choice. When I got to see the endo he asked, so what are you thinking - I told him and he said "I agree with you" - I nearly fell off my chair! He started me on thyroxine and Ive just had an increase to 100 mcg. Although some people dont get on with synthetic thyroxine, I have seen a massive improvement over the last few months although Im still progressing. I had a lot of symptoms like you - a family history, tiredness, aching muscles and especially heel pain, memory and concentration problems - I felt dreadful and became depressed but as a result of feeling so awful and having to keep going! First I thought it was menopause, like you my periods stopped abruptly, and Im now wondering whether this was menopause or tied up with the thyroid issue - Ive since had some sporadic periods. My libido was out of the window but is returning!! My advice to you - get someone to take your blood - should be easy as you work in the NHS and get your bloods tested (TSH, fT3 and FT4) by NPtech - the results should prove your theory and then insist on a referral to endocrinology - and choose one of the ones in the list - or one you know of, that will treat for hypoT on your symptoms and not just your blood results. I find that if you sit there with the GP and sit it out insisting on a referral they will usually give in and agree - if only to get you out of the surgery!! (if I sound jaundiced its because I work in the NHS!). You will feel so much better when you get this sorted! Gill re hello Im kim_,___ re: heh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hi Kim, Welcome to our Forum and I sincerely hope you get all the help and support you need to regain your normal health once again. It is possible, and there IS light at the end of the tunnel - even though the tunnel might seem to be very long. > Hello, I am Kim a 50yr old midwife. Currently into my second month > off work due to OCD and stress. This was diagnosed recently and I > have been started on Fluvoxamine for 'clinical depression and OCD'. > Why do I think my thyroid is at fault?? Well because recently two of > my four sisters, one older and one younger have been diagnosed with > underactive thyroid. I have been told my TSH is normal and the lab > has 'lost' the sample from last wednesday requesting, liver function, > TSH and T4. So I went to my doc on monday 10th to get the results and > she told me that I needed to go and get my blood taken again. This > time I asked for T3 and antibodies as well as T4, didn't know about > other stuff. I have been told my cholesterol is raised total=5.7 LDL > is over 3. So this is my thought, I have one patch of white skin (OK > I am white but I mean not much pigment) so ? vitiligo, which my > daughter has, I have oral lichen planus and FSGS which is a > autoimmune kidney disorder affecting the filters (glomeruli actually > its called focal segmental glomerulosclerosis). I hope you are still > with me....I am thinking, raised cholesterol, pre-existing autoimmune > diseases x 3, depression with new diagnosis of OCD (obsessional > compulsive disorder),afternoon fatigue- well fatigue full stop. Acid > reflux, aches and pains, my periods stopped in August 04 age 46 > 10months, no further bleeding of any amount. Libido went that day > too, I have constipation on and off, cold feet, weight gain following > a period of illness despite eating less oh and I forgot - I forget > everything, even if I was just told a name, its gone!! At work I feel > I have forgotten everything, my nails have vertical ridges.> Thats it folks! I may be a fraud, masquerading as > depression/menopause/depression as thats what my GP thinks and the > family history is 'interesting'. It definitely sounds as if you have Hypothyroidism . This occurs when thyroxin (T4) levels drop to the point that the body begins to slow down and it can't get back to what it was before without thyroid hormone replacement. There are many reasons why this happens, and it is proven that there is a connection between such a thyroid disorder andd some behavioral disorder such as depression and obsessive-compulsive disorder. Treating the primary problem of hypothyroidism will treat also all consequences in the same time. There can be many causes of OCD and one can be insufficient serotonin. An insufficient level of serotonin, one of your brain's chemical messengers, may contribute to obsessive OCD. There have been some studies that compare images of the brains of people who have obsessive-compulsive disorder with the brains of those who don't show differences in brain-activity patterns. It has also been found in addition, that people with OCD who take medications that enhance the action of serotonin often have fewer symptoms. There could definitely be a connection with low thyroid hormone and OCD - please read the following :http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve & db=PubMed & list_uids=15319028 & dopt=AbstractPlus I hope that your local laboratory will do the Free T3 you have asked for, and that they will also do the test to see if you have antibodies to your thyroid. Hashimoto's is the number one cause of hypothyroidism. If they refuse to test your Free T3, you can get this tested privately through NPTech Services. Go to the bottom of this message and click on FILES and you can scroll down the list until you find NPTech Services. That will show the tests they do and the prices they charge. The fact that you have already existing autoimmune problems points strongly to the possibility that you do have antibodies to your thyroid. You would be surprised how many sufferers of hypothyroidism suffer with Lichen Schlerosis and Lichen Planus (myself included) and also vitiligo and other autoimmune disorders. If this was me Kim, I would 1) write a letter to my GP (and send a copy to the Head of Practice if you feel this would help:). Go to our website www.tpa-uk.org.uk and have a look at the symptoms and signs list (you will find this by clicking 'Hypothyroidism' and it is there in the drop down sub menu. List the number of how many symptoms and how many of the signs you suffer in this letter. 2) Take your basal temperature every morning for about 5 days before you get out of bed in a morning and list these in your letter also. 3) Ask your GP to test to see if you have low ferritin (stored iron) because if this is the case, you will also get all the symptoms of hypothyroidism and it can actually be a cause of hypothyroidism. You would need a course of elemental iron such as Ferrous Sulphate to increase your iron. Normal reference range for women is 20 to 200 and you should be at least around 70 to 90 to function as normal. 4) Write down your family history of thyroid disease. 5) Tell him that the DoH, the GMC, BTF and many organisations recommend that a patient be given a thorough examination, signs and symptoms looked at, family history looked into and blood tests should ALL be taken into account and say you are not happy that he is ONLY looking at blood results - and that those results are NOT the full thyroid function tests to tell the full story. 6) Ask to be referred to an endocrinologist as early as possible because the longer you remain without treatment, the worse your problems will get. It is always best to write to your doctor because your letter has to be placed in your medical notes - and if your doctor refuses to comply to your requests and it is then found you have suffered unnecessarily because of this, he could be taken to account. You are not acting as a "fraud" - never mind what you doctor might think, quite plainly, he does not know about hypothyroidism and the consequences of untreated or under treated thyroid disease. Is there any chance you could change your GP to one who would listen to you and who would try to work with you rather than against you? If this isn't possible, could you see a private specialist who knows about thyroid disease? Again, there is light at the end of the tunnel. Do read everything in our Files and look at the links and read everything you can on our website. There is a link to an article about depression on our website and this shows the connection between thyroid disease and depression. Luv - Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hello, It is reasuring to know others have had similar experiences in getting their health sorted. I have come to the conclusion that they think I am a hypochondriac. I have just had my bloods done for free T$, free T3 and auto antibodies so I am hoping that something shows up - now thats a bizaar thing to say. I dont want to be ill and with a diagnosis it means I can get treatment. I have taken my temperature on 3 consecutive mornings now before talking or getting up and its been 35.9, 36.4 & 35.8 now this is axilla and I am not sure if this is the right way of doing it because I am assuming that if I did it orally it would be normal. Kim -- In thyroid treatment , " jenny stenning " <jennystenning@...> wrote: > > Hi Kimm, > The all too common sad story. The infuriating thing is thyroid > failure is staring your doc in the face and all he says is 'interesting'. > The big problem is that once you have the tag of depressed than all else > that is said tends to be ignored. > Once the blood tests are in the 'normal' range then all the symptoms get > ignored. It is perfectly possible to have normal TSH as your pituitary gets > low too and then can't put out enough TSH to stimulate the thyroid to > produce more thyroid hormone, it is when the thyroid fails to respond that > the TSH should rise. > You can try to ask for a trial of thyroxine 'to see if it helps' or better > still ask for a referral to one of the docs 'who do' on the website list to > try to get a diagnosis. > If you have one autoimmune disease ( vitiligo) then you are more likely to > get another ( hashimotos thyroiditis) you could ask to have antibodies > tested as these tend to raise before enough of the thyroid is destroyed to > cause the TSH to rise. > > > > Hello, I am Kim a 50yr old midwife. Currently into my second month > off work due to OCD and stress. This was diagnosed recently and I > have been started on Fluvoxamine for 'clinical depression and OCD'. > Why do I think my thyroid is at fault?? Well because recently two of > my four sisters, one older and one younger have been diagnosed with > underactive thyroid. I have been told my TSH is normal and the lab > has 'lost' the sample from last wednesday requesting, liver function, > TSH and T4. So I went to my doc on monday 10th to get the results and > she told me that I needed to go and get my blood taken again. This > time I asked for T3 and antibodies as well as T4, didn't know about > other stuff. I have been told my cholesterol is raised total=5.7 LDL > is over 3. So this is my thought, I have one patch of white skin (OK > I am white but I mean not much pigment) so ? vitiligo, which my > daughter has, I have oral lichen planus and FSGS which is a > autoimmune kidney disorder affecting the filters (glomeruli actually > its called focal segmental glomerulosclerosis). I hope you are still > with me....I am thinking, raised cholesterol, pre-existing autoimmune > diseases x 3, depression with new diagnosis of OCD (obsessional > compulsive disorder),afternoon fatigue- well fatigue full stop. Acid > reflux, aches and pains, my periods stopped in August 04 age 46 > 10months, no further bleeding of any amount. Libido went that day > too, I have constipation on and off, cold feet, weight gain following > a period of illness despite eating less oh and I forgot - I forget > everything, even if I was just told a name, its gone!! At work I feel > I have forgotten everything, my nails have vertical ridges. > Thats it folks! I may be a fraud, masquerading as > depression/menopause/depression as thats what my GP thinks and the > family history is 'interesting'. > > > > Messages are not a substitute for professional medical advice. Always > consult with a suitably qualified practitioner before changing medication. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hello, It is reasuring to know others have had similar experiences in getting their health sorted. I have come to the conclusion that they think I am a hypochondriac. The majority of NHS doctors think we hypothyroids are hypochondriacs or suffering middle age depression or something. Don't worry Kim, you are not alone ( I have just had my bloods done for free T$, free T3 and auto antibodies so I am hoping that something shows up - now thats a bizaar thing to say. I dont want to be ill and with a diagnosis it means I can get treatment. Let's hope the laboratory does all the tests requested and let's hope you DO get a result. As you say, you can then start treatment to get back your normal health.I have taken my temperature on 3 consecutive mornings now before talking or getting up and its been 35.9, 36.4 & 35.8 now this is axilla and I am not sure if this is the right way of doing it because I am assuming that if I did it orally it would be normal. I am assuming this is a digital thermometer you are using and not one you can place in your mouth. Mercury thermometers are more accurate by placing it in your mouth. Come to think of it, I don't relay know much about digital thermometers, neither do I don't know much about digital cameras DUH ! ;o) Sheila Kim-- In thyroid treatment , "jenny stenning" <jennystenning@...> wrote:>> Hi Kimm,> The all too common sad story. The infuriating thing is thyroid> failure is staring your doc in the face and all he says is 'interesting'.> The big problem is that once you have the tag of depressed than all else> that is said tends to be ignored.> Once the blood tests are in the 'normal' range then all the symptoms get> ignored. It is perfectly possible to have normal TSH as your pituitary gets> low too and then can't put out enough TSH to stimulate the thyroid to> produce more thyroid hormone, it is when the thyroid fails to respond that> the TSH should rise.> You can try to ask for a trial of thyroxine 'to see if it helps' or better> still ask for a referral to one of the docs 'who do' on the website list to> try to get a diagnosis.> If you have one autoimmune disease ( vitiligo) then you are more likely to> get another ( hashimotos thyroiditis) you could ask to have antibodies> tested as these tend to raise before enough of the thyroid is destroyed to> cause the TSH to rise.> > > > Hello, I am Kim a 50yr old midwife. Currently into my second month > off work due to OCD and stress. This was diagnosed recently and I > have been started on Fluvoxamine for 'clinical depression and OCD'. > Why do I think my thyroid is at fault?? Well because recently two of > my four sisters, one older and one younger have been diagnosed with > underactive thyroid. I have been told my TSH is normal and the lab > has 'lost' the sample from last wednesday requesting, liver function, > TSH and T4. So I went to my doc on monday 10th to get the results and > she told me that I needed to go and get my blood taken again. This > time I asked for T3 and antibodies as well as T4, didn't know about > other stuff. I have been told my cholesterol is raised total=5.7 LDL > is over 3. So this is my thought, I have one patch of white skin (OK > I am white but I mean not much pigment) so ? vitiligo, which my > daughter has, I have oral lichen planus and FSGS which is a > autoimmune kidney disorder affecting the filters (glomeruli actually > its called focal segmental glomerulosclerosis). I hope you are still > with me....I am thinking, raised cholesterol, pre-existing autoimmune > diseases x 3, depression with new diagnosis of OCD (obsessional > compulsive disorder),afternoon fatigue- well fatigue full stop. Acid > reflux, aches and pains, my periods stopped in August 04 age 46 > 10months, no further bleeding of any amount. Libido went that day > too, I have constipation on and off, cold feet, weight gain following > a period of illness despite eating less oh and I forgot - I forget > everything, even if I was just told a name, its gone!! At work I feel > I have forgotten everything, my nails have vertical ridges.> Thats it folks! I may be a fraud, masquerading as > depression/menopause/depression as thats what my GP thinks and the > family history is 'interesting'. > > > > Messages are not a substitute for professional medical advice. Always> consult with a suitably qualified practitioner before changing medication. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Axilla......we're talking armit, right? You should get a reading of about 0.5 lower than if you put the thermometer in your mouth. As someone who has already managed to destroy 3 mercury thermometers and probably now has mercury poisoning, lol, I can understand why you'd want to go digital. There are digi thermometers that are specially designed to cope with sub-normal temps but most of the standard ones are totally unreliable once you drop lower than 37. I found this out the hard way. the way I used to get around the mercury thermometer problem was to put a very thin plastic bag around it but of course I got lazy in the end and here went the 3rd one. Hope you get the results you are looking for, all any of us want are answers eh? Luv Bella > > > > > Hello, It is reasuring to know others have had similar experiences in > getting their health sorted. I have come to the conclusion that they > think I am a hypochondriac. > > The majority of NHS doctors think we hypothyroids are hypochondriacs or suffering middle age depression or something. Don't worry Kim, you are not alone ( > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.