Guest guest Posted March 12, 2010 Report Share Posted March 12, 2010 > > Hi everyone, > I've just been diagnosed with Chiari 1 Malformation (15mm). My Neurologist told me it was nothing to worry about and that I don't need to see him again, nor do I need any ongoing monitoring, scans etc. > The Neurologist tells me that my symptoms are related to anxiety not Chiari, however when I look up this condition, I have so many of the symptoms! > My question is whether this is something I need to be concerned about, and what I should be doing from here? I am in Australia so unfortunately we don't have any Chiari Institute or specialists that I know of. Thanks for your help. > Hi A bit of good news = Australia does have a current specialist in acm /syringomyelia and related conditions = Dr Stoodley . ( or is it Prof. ? ) I can't recall Au english use in this title . He's been a presenter at the asap confrence in the past , and has been studying the csf dynamics /structural issues ect for quite a few years now , = from Au member posts here I've only seen =can recall good things and experiences being related as patient or parent discussion - in short I think you may be closer than you realise to true acm specialist care and help . As I recall now = there is also an AU suport group organized , where quite a few members here and from wacma /asap have a yahoo /health discusion suport site like this one ( and where regional /local issues are discussed by members = but these group's typically also particate here too ... can someone help my failing memory where the group listing might be ? I think I would start by asking for referal to Dr Stoodley , he does use Cine MRI as needed /and does grasp those points it's become a serious neurosurgical concern == I think he also frequently helps get local =regional services in the PT or OT , other specialists accessments ect coordiated through his practice too = so hopefully you'll get good guidance on your way forward quickly through seeing him . in Paradise CA ( acm , eds , multiple sclerosis ect ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2010 Report Share Posted March 12, 2010 You need to see another Dr. Right away!! 15mm is a lot, and Chiari does not go away. Please get another opinon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Welcome to our group, - sounds like you've had a rough road of it. Hope you can find some support here. How did the Armour make you feel worse? Usually Armour comes in grains, not mg, so wondering of your dosage. Sometimes it takes a while to adjust to taking thyroid meds - can be a shock to the system. > > Hi, > > My name is , I am 50-years-old and was just " officially " diagnosed with Hashimoto's. I’ve had hypo and sometimes hyper symptoms for many, many years but was not tested for TPO antibodies until 2004. I tested positive but my then Endo felt that I did not require treatment and that instead, we should just watch and wait. I also have a very strong family history of Hashimoto's (daughter, sister, mother). Many Endo’s later, a TPO antibody retest and I have now been placed on 15 mg of Armour. I took my first dose this morning and I must say, I felt horrible all day! > > My Anti-TPO was 966 U/ml (lab ref <60) and my Endo said that my values are not very high. > > Other Chronic Conditions: > > Congenital Adrenal Hyperplasia > PCOS > Hyperinsulinemia > Ulcerative Colitis > Grade II Diastolic Dysfunction > Hyperlipidemia > B12 deficiency > Iron deficiency > Folate deficiency > D deficiency > > Thank you for letting me be part of your group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 Hi , Everything mentioned is true. I am also curious of what you meant by feeling horrible. From your symptoms and other diseases possibly you have a lot of thyroid autoimmunity going on. Have you been tested for Graves' disease. Some Hashis have antibodies common in Graves' as well as the TPO and TG abs. My daughter is one such person. I see more and more people with this condition as well. The tests are TSI and TBII. The TSI test shows what percentage of stimulating TSH receptor antibodies that stimulate thyroid cells, acting in place of TSH and causes the over production of thyroid hormone. Normally a TSI result of >130% is a diagnosis of Graves' disease. Healthy people do not produce TSI and have levels at <2%. The TBII test measures both blocking and stimulating TSHR (TSH Receptor) antibodies and comparing the TBII and TSI a knowledgeable doc can see how much blocking activity is happening. Without this test the doctor is only getting a partial picture of thyroid autoimmunity and thyroid function. TSHRabs can cause either hyper or hypo thyroid dysfunction. It gets complicated as the pituitary gland itself CANNOT distinguish between TSH and TSH Receptors. When TSHRabs are present the TSH can be " normal " but the freeT3/freeT4 tests can be quite low or high, but there's a lot of autoimmunity going on inside the body including TED (thyroid eye disease) damage. To explain a bit further, blocking antibodies block the action of TSH on thyroid cells - the binding antibodies bind to the TSH receptor and prevent TSH and other TSH receptor antibodies from reacting with the TSH receptor. You can have Graves' disease but be hypO if these TSHRab are dominant. It is common for TSHRabs to suddenly switch from stimulating to blocking and vise versa. (Again, these antibodies are responsible for TED.) Although many docs never check for the blocking antibodies it is important to get rid of these antibodies to preserve your health and eyes; an antithyroid drug can do just that. That is how my daughter is being treated. She takes small doses of an antithyroid drug and a T4 drug called Unithyroid. The antibodies that stimulate and block her thyroid keep her labs normal but she has massive autoimmunity going on damaging her eyes, skin and thyroid. This protocol is stopping tissue destruction. The downside is MOST doctors will NOT test or treat. NOTE: TPO antibodies are found in 80% of Graves' patients, so they are NOT always all-telling for Hashis. Above normal TSI and TBII results can also mean Hashitoxicotis. Best wishes, ~Bj > > > > Hi, > > > > My name is , I am 50-years-old and was just " officially " diagnosed with Hashimoto's. I’ve had hypo and sometimes hyper symptoms for many, many years but was not tested for TPO antibodies until 2004. I tested positive but my then Endo felt that I did not require treatment and that instead, we should just watch and wait. I also have a very strong family history of Hashimoto's (daughter, sister, mother). Many Endo’s later, a TPO antibody retest and I have now been placed on 15 mg of Armour. I took my first dose this morning and I must say, I felt horrible all day! > > > > My Anti-TPO was 966 U/ml (lab ref <60) and my Endo said that my values are not very high. > > > > Other Chronic Conditions: > > > > Congenital Adrenal Hyperplasia > > PCOS > > Hyperinsulinemia > > Ulcerative Colitis > > Grade II Diastolic Dysfunction > > Hyperlipidemia > > B12 deficiency > > Iron deficiency > > Folate deficiency > > D deficiency > > > > Thank you for letting me be part of your group. > > > Quote Link to comment Share on other sites More sharing options...
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