Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 In a message dated 10/1/02 5:59:12 AM Pacific Daylight Time, sawyerjc@... writes: << On the other hand there is also a type of hypothyroidism that occurs when the body's own immune system produces antibodies and attacks the thyroid gland. Autoimmune disease also comes with mitochondrial disease, and I actually think this type of hypothyroidism may be a little more common than the other. >> Interesting that I have that-it's called Hashimoto's thyroid disease. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 , My 6 year old son Lucas developed hypothyroidism due to pitiuitary malfunction at the age of 4. Lucas had a frozen biopsy that was suggestive of mito disorder but no definite confirmation. At the same time he developed severe reflux and is now J-tube fed. Prior to that he was a complete oral eater. The hypothyroidism is actually one of our stronger reasons that we feel he leans more to a mito diagnosis. Prior to this the metabolic doctor felt he was just developmentally delayed possibly more apt to be a mild variation of some other symptom. An excellent website i recently discovered regarding thyroid issues is www.thyroid-info.com. I also am hypothyroid and really would like to know if their is some connection with it and Lucas' problems. Hope this helps, Loriann (mom of 3 boys) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 , My 6 year old son Lucas developed hypothyroidism due to pitiuitary malfunction at the age of 4. Lucas had a frozen biopsy that was suggestive of mito disorder but no definite confirmation. At the same time he developed severe reflux and is now J-tube fed. Prior to that he was a complete oral eater. The hypothyroidism is actually one of our stronger reasons that we feel he leans more to a mito diagnosis. Prior to this the metabolic doctor felt he was just developmentally delayed possibly more apt to be a mild variation of some other symptom. An excellent website i recently discovered regarding thyroid issues is www.thyroid-info.com. I also am hypothyroid and really would like to know if their is some connection with it and Lucas' problems. Hope this helps, Loriann (mom of 3 boys) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 , This is just my opinion, but I think there seems to be a greater incidence of pituitary dysfunction, or endocrine problems (with the exception of diabetes) with complex IV. It seems that the only other families that I have heard of, that have panhypopituitarism, or any significant type of pituitary dysfunction are complex IV. Could just be a coincidence, but it sure seems strange. Especially when we've been told that this type of pituitary dysfunction is not that common with mito. Certainly pituitary dysfunction can be impacted by mitochondrial disease and energy shortage, because the pituitary requires a large amount of energy. It is also known as " unforgiving " , in that, when there is an injury or insult to the pituitary it rarely recovers, unlike other organs and glands. Both of my girls, and myself have some degree of pituitary dysfunction and both are growth hormone deficient. My youngest has what is known as panhypopituitarism. The pituitary is the master gland and helps control the other glands. But in her case, it does not do it's job and we have to supplement with replacement hormones, all the things that the pituitary would normally tell her body to do. She takes several hormones to replace what she is not producing. On the other hand there is also a type of hypothyroidism that occurs when the body's own immune system produces antibodies and attacks the thyroid gland. Autoimmune disease also comes with mitochondrial disease, and I actually think this type of hypothyroidism may be a little more common than the other. The fact that she has thyroid antibodies makes me wonder if she fits into the second category rather than the first. Does she have any other endocrine symptoms? As far as your confusion, and the silver lining. It is nice to have a name, a diagnosis, but in our experience, the investigating, and challenge continues on a daily basis, to try to find out what's going on. As time goes on, we do have more clues, but just about the time we think we have everything figured out, and things are stable, something else crops up. It is frustrating, but history tells me that we'll get through, as we always have gotten to the bottom of things before. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 In a message dated Tue, 1 Oct 2002 3:17:09 PM Eastern Standard Time, juhlmann@... writes: > I sure hope they do not become thyroid hormone resistant > too. Since being diagnosed 7 years ago, I've had to have periodic increases in Synthroid dosage, now taking 0.2 mg daily. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 In a message dated Tue, 1 Oct 2002 3:17:09 PM Eastern Standard Time, juhlmann@... writes: > I sure hope they do not become thyroid hormone resistant > too. Since being diagnosed 7 years ago, I've had to have periodic increases in Synthroid dosage, now taking 0.2 mg daily. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 Anne, >So it is interesting to me that what >you are hearing is that a high T3 = resistance. What I understand the doctor said is significant is not that the T3 is high but that it's high in conjunction with a normal TSH. So, I don't think he's exactly saying " T3 = resistance " , but " T3 + normal TSH = possible resistance " . But why would a resistance syndrome mean she would be hyperthyroid rather than hypo (he said he would treat for hyperthyroidism)? Boy, am I clueless on this thyroid stuff! > >I asked our endo why the High Free T3 and he said it is odd but he think it >has to do with variations in protein binding. (HUH? is what I said). We are >seeing him in a few weeks so I will get a better explanation and let you >know. Great! Thanks! I'm with you on the protein binding...huh?! BTW, Emilie's twin's thyroid tests are back now, too. Her free T3 isn't above normal, but it is in the high end of normal. So now the doctor is wondering about her, too, and is talking about doing a radioactive test. Anyone know what the test might show--sorry, can't remember the exact name. BTW, do Zach and Sam have Complex IV? Thanks for sharing! -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 >Yes, the middle one was actually diagnosed when she was a toddler with >Dysautonomia, and referred to NYC, but my youngest was biopsied by Dr. >Shoffner, and dx'd with Complex IV. Dr. Shoffner felt after reviewing >all three of the kids records that they all had a complex IV deficiency. > One of Emilie's pre-mito diagnoses was dysautonomia. Sounds like our girls have a fair amount in common. -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 31528@... wrote: > That's really interesting about complex IV. I > take it your girls have complex IV?? Yes, the middle one was actually diagnosed when she was a toddler with Dysautonomia, and referred to NYC, but my youngest was biopsied by Dr. Shoffner, and dx'd with Complex IV. Dr. Shoffner felt after reviewing all three of the kids records that they all had a complex IV deficiency. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 : Yes, Zach and Sam do have complex 4 - less than 5% functions. They also have 0 complex 1. Like Emilie they have dysautonomia - in Sam it is very significant & getting very scary. I wish there were better ways to treat it. Anne Re: Re: Re: Thyroid > BTW, do Zach and Sam have Complex IV? > > Thanks for sharing! > > > > > -- Mom to: > Emilie (16), mito--complex IV, cp, ld > Kaitlin (16), cp, asthma, a few autonomic symptoms > Ian (20) migraines > ...and wife to Tim, who has a heart of gold > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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