Tag Archives: Endocrinologist

Still Being Poked, but Optimistic

Day by Day with a Movement Disorder Posted on by 4

Well, I was hoping to wait until I had something definite to add, but it looks like that’s not going to happen any time soon. Since I’ve written last I’ve had two more sets of liver enzyme tests with varying results, but still high. I’ve been to the Endocrinologist, and he’s run all the thyroid tests again and done an ultrasound of my thyroid.  He is satisfied that all is normal there. The liver biopsy results came back normal. So far so good.

But, I asked at my last Gastro visit if muscle atrophy could cause the liver enzyme numbers to be high, based on some information I found on the internet. So he added a Creatine Kinase test to the orders for the liver function panel, and the CK numbers were elevated. I’m not sure yet what that means, as I’m having a routine colonoscopy this week and won’t see my Gastro again until the followup appointment for that.

I’ve decided that the variation in AST and ALT numbers I keep getting is determined by how much walking I’ve done prior to the test. When I had to walk a long way to the lab the numbers have been higher than when it was close by. I really do think all the abnormal numbers have something to do with whatever is making my walking so labored and oddly gaited.

I have a feeling I won’t get any answers until I see the Neuromuscular Movement Disorder Specialist at UAB in October. But at least we’ve ruled out several things that could have caused this weakness.

I’ve finally reached a point that I’m no longer worried about them finding some horrible something wrong with me, and I’m very thankful for that. I am not as weak as I was back in March when this all started, and I’m VERY thankful for that. I feel good enough to have made a dent in the backlog of work that accumulated when I was so very weak, and that helps my outlook, too.

I’m thankful to God that most of the scariest possibilities have been ruled out, and I’m no longer anxious about the final results of all this testing.

Liver Test Results Still Abnormal = Liver Biopsy

Day by Day with a Movement Disorder Posted on by 7

My liver enzymes tests came back abnormal again, higher than they have been, so I had a liver biopsy this morning. It will take about a week to get the results.

We had read online about what the procedure would be like, but what they actually did was a good bit different. And I’m still hurting, although not as bad as I was right afterwards. I’m still not able to take a full breath without a sharp pain at the entry point. If feels like I’m getting stabbed every time I inhale with any breath that’s not shallow. Morphine and Lortab barely cut it at the hospital, and they’ve long since worn off. I don’t want to take Tylenol, as I think it would be a waste of time. If I’m still hurting this much tomorrow, I’ll call my Gastro and ask for a prescription.

I’m guessing that my diaphragm is having myoclonic jerks from the irritation to the nerves in the diaphragm. And of course I’m not taking any Myoclonus meds now.

We’re praying that the results of this procedure will give a definitive answer as to whether or not I have any kind of liver damage. Reading all the side effects that the various meds I’ve been on and off for the last six years, it wouldn’t be too surprising if I had Drug Induced Liver Disease. Or it could be Fatty Liver Disease, as I used to weigh 182 pounds. I’m a small boned 5 foot 2 inch lady, so I was way overweight up until about a year ago.

My Neuro is waiting for all these liver tests to be dealt with before he will proceed with referring me back to the Movement Disorder Specialist at UAB. He’s the Head of Neurology there at one of the best diagnostic hospitals in the USA. He’s the one who gave the dx of Essential Myoclonus. But now I’m not jerking and almost too weak to walk.

I also have an Endocrinologist appointment next month. So I’ll see him, if the liver biopsies come back as normal, to check for thyroid problems.

Dr. House, Where ARE you???????

Please keep us and my doctors in your prayers. We need an answer.

Hemochromatosis – Another Possibility Crossed Off the List

Day by Day with a Movement Disorder Posted on by 4

Well, the DNA test for Hemochromatosis came back normal, so that’s another possible diagnosis for my weakness ruled out. But after doing the research on this particular line of testing, I would caution anyone with Anglo Saxon ancestry to consider this as a possible cause of a wide range of disorders, from Type II Diabetes to heart problems.

It’s the most common genetic mutation found so far, with as many as 1 in 8 of Irish descent being a carrier of the gene. Something in the range of 1 in 300 Northern Europeans have at least one of these mutated genes, but it takes the mutation from both parents for the likelihood of symptoms to be dramatic. And if caught before organ damage is done, it can be easily treated. It normally takes many years to build up the iron overload, so most people don’t show symptoms until they are older.

With the Hemochromatosis test being normal, my Gastro doesn’t want to see me again for 6 months. So I guess that means he’s ruled out any liver problems as being the cause of my problems.

So, I’ve requested a Western Blot Lyme Disease blood test. I know this is a very, very long shot, but I have had the bull’s eye rash from a tick bite in the past. We found it one evening and were waiting at the doctor’s office’s doorstep the next morning. He put me on a round of antibiotics at that time. So the chances of having Lyme are not high, at least from that event. BUT, I have always lived in Alabama, and ticks are everywhere. I can’t count how many times I can remember finding them on me over the years, and their bite doesn’t always make the bull’s eye rash.

Lyme Disease can mimic lots of other diseases, depending on which organs the bacteria attacks, including neurological disorders. Treating it involves long term antibiotics, which may or may not reverse the damage already done to the body. So, I’m hoping this test turns out to be negative.

I did get a referral from my GP to an Endocrinologist, and I have an appointment with him in mid August. I’m still holding out hope that this terrible weakness turns out to be from Hypothyroidism, which our daughter has been treated for for many years. My symptoms do fit, even though the routine tests came back normal. But it is possible to have a hypothyroid condition with normal tests. It would explain my muscle weakness, hoarseness, and intense itching, and it’s fairly easy to treat.

I see my Neuro again next week, so we’ll see what he says then.

In the meantime I continue to use the cane outside the house, and could really use the walker. But I’m back to that same head space I was years ago when I was originally dx with Parkinson’s. There’s just something about “giving in” to the walker that I try to put off as long as possible. It’s bad enough having to use the cane, without having people see me as getting worse. It draws too much attention to me, and I can’t stand that.

So for now, I’m praying this turns out to be something simple to treat, like thyroid problems, and not some exotic disease that may never be diagnosed.

I’m trying to be patient, but frankly I’m not doing a very good job of it. I deal with an enemy I know much better than I do the unknown. But I’m in God’s Hands, and He knows my needs far better than I ever could.