jenglynn Posted February 9, 2012 Report Share Posted February 9, 2012 Hi! I know I've asked this in the past- but had concussion #9 over the weekend and my memory took a big beating this time... TSH is about .07 and T3/4 were not quite hypo but borderline and close. What should I be looking for or anything for that matter? Endo called me today and said I was fine and retest in a year due to strong family history of thyroid issues and I have Autoimune Issue f some kind that's being studied but not figured out.In a way, sometimes I think if I should worry about it all- could be the least of my worries- then I will think what if it's causing issues I don't even know about?Hate to blame things on my bruised up brain, but I just can't remember and couldn't find thread either. Thanks so much!!Jen Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 9, 2012 Report Share Posted February 9, 2012 Hypopituitary. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 9, 2012 Report Share Posted February 9, 2012 Jenn, mine is the same way- TSH .05 and T3 actually below normal. Just like you my TSH looks hyper and my actual free enzymes look hypo. It makes no sense and both endo's I've talked to said they don't know what to make of it, but "not to worry". Well I do believe it is important and relevant to our illness. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 10, 2012 Author Report Share Posted February 10, 2012 Julie,I can only imagine you have the same frustration that I do when I hear endos say "It is perfectly okay, nothing to worry about. Normal." How can they say it is normal when our TSH are hyper? This is the third endo to tell me the exact same thing: "Don't worry about it" Like you, I have an autoimmune disease (we do not know WHAT it is though) and I have a very strong family history of different thyroid issues. I just an endo a couple weeks ago who advised me to get my levels checked every 2 years just to be "safe" in case there is some kind of family connection. You think????? 5 years ago I was right in the middle- TSH was around 3.5 got something like that... Last Dec it was .68, Then in July it was .41 and then in Dec. it was .07. This is a huge frustration with me. Obviously over the last 5 years my numbers have been jumping all around. I get the same runaround at Mayo with my Connective Disorder Disease (most likely EDS) but Mayo would not waste time diagnosing it because it has "NOTHING" to do with autonomic dysfunction. They told me if I wanted to pursue the EDS dx I would have to do it elsewhere. Like I am SOOOO excited to go get another diagnosis.. but if I HAVE it and they say I meet the criteria and means of testing I don't get why they wouldn't look into it a little further. They believe my autonomic dysfunction is autoimmune mediated- FINE. But I would certainly like to know if I have EDS (as I have a 13 yr old daughter with the same symptoms) and at least it would explain my extreme hypermobility, hyperextendible joints, numerous dislocations, and the debilitataing joint pain I get at times. By the time I left Mayo, they were actually starting to tease me about it because I brought it up so many times... they had bets to see how long it would be until I would bring it up again. It was very funny to them but I certainly don't find it amusing. Now i have to go elsewhere and get tested but luckily I just found a local neuro who will actually treat me (YAY!!!! None of the local neuros would treat me because they considered me a liability because basically they had NO idea what I was talking about or how to interpret my tests or notes). Saw him for the first time last week and the first thing he brought up to me after reading through my notes from Mayo was the "possible" EDS and he said we need to start looking into that right away and have your daughter tested at the same time. I am still going to Mayo as my primary neuro and see what they have in mind for Plan B after the rejection of the IVIG. Have to wait until March... in the meantime continuing life in Autonomic Limboland. Jen Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 10, 2012 Report Share Posted February 10, 2012 Those thyroid numbers look like mine! Central hypothyroidism. Here is a copy of info my doctor gave me with what kind of thyroid tests you need and what your numbers will look like if you have central hypothyroidism. Hope it helps. http://www.goodhormonehealth.com/Hypothyroidism-final.pdfhttp://www.goodhormonehealth.com/Chapter%204%20Hypothyroidism.pdf Quote Link to comment Share on other sites More sharing options...
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