Elevated thyroid and liver

[Guest guest]

Foe the last 8 years my daughter, who has Leigh's, has been doing

very well. However, she caught a cold about 2 months ago and she has

been the same since. She is tired all the time, shows no interest in

playing with her toys, lost appetite, and doesn't even want to smile

most of the time. We took her to the doctor to run blood tests. The

results came back today that her thyroid tested at 9.87 and her liver

has an elevated level of 90. They prescribed Synthroid for her

Thyroid. She goes for her Ultrasound for her liver on Monday, which

I'm nervous about since they mentioned testing her for Hepatitas.

Can someone tell me what " normal " levels are and if this is a common

side affect of a mito disease? I'm pulling my hair out

stressing . . .

[Guest guest]

Not sure about the thyroid, but believe it or not the liver is not too bad. Normal for liver is about 15-40 (or somewhat close to that), but one can double or even triple that with illness.

Also Hepatitis is a generic term for an inflamed liver, it does not necessarily mean the viral version. Unless your daughter is really into illegal drugs, has been "active" or has had blood transfusions (even though it is REALLY rare now a days) she should be fine.

Liver disease was Gracies first "hard sign" of mito. She began with her enzymes starting at about the 90-110 level. She was dehydrated at the time so they really did not make much of a deal about it. They rechecked a week or so later to find them at the 200 level. To make a long story short they finally stabalized around 2000+. We do not know really how far past 2000 they went because that was the labs limit. They tested her for the viral version of Hep. C three different times, because I had a blood transfusion right after her birth and I was breastfeeding. All three were normal.

She went for tons of ultrasounds, and has had three liver biopsies. The ultrasounds and two of the biopsies (needle type) only found unexplained inflamation. Her liver wedge biopsy confirmed undoubtably mito. (She had a muscle biopsy done at the same time.)

She took a drug called Actigall for a long time. Thankfully her enzymes are in a much more comfortable limit (I believe they said 85-90, wich we are considering normal) so now she is off the Actigall. She does have to be rechecked every 6 months or so, because there has been some permanant damage since it was so bad for so long.

In the end, though, even with the damage done her liver is functioning perfectly normal. The liver is the only organ that can heal itself.

I hope I did not confuse you more. If you have any more questions feel free to email me. There are a few other children in this group who also have liver issues, so there parents may help as well.

Best wishes

MSN Premium helps protect against viruses, hackers, junk e-mail pop-ups.