Medical Test Confusion

[JuliaC]

Hello,

My husband was diagnosed as having long term Hepatitis C about a month ago. He is 51 years old and has no insurance. He has to go through the Veterans Administration for tests and hopefully eventual treatment.

My husband's feet and ankles began swelling and he paid for some blood work to be done out of pocket. Eventually, he found he had Hepatitis C with a viral load of 11 million. His blood platelet count was extremely low. Liver enzymes were slightly elevated. Oddly, Folate level in the blood was much lower than iron level and B 12 was normal- even near high range.

We took the blood results to the VA and they wanted to retest- so made an appointment for three weeks later just to get around to that- the 2nd blood test will take place tomorrow, the genotype will be done at this time also.  Also, sent in stool sample to check for blood- results still pending. Last Thursday he went in for ultrasound. We got a call from his primary care doctor today saying that results of an ultrasound were in. They said the liver was normal (do not really understand that), kidneys were normal, spleen is enlarged and they saw a "shadow" in spleen area (?). They now want to do a CT scan. Does anyone have an idea what this could mean?

Thanks!

Julia

[gnatcatcher]

Hi, Julia. Your and your husband's heads must be swirling from all of these recent results. I can comment on a couple of things from my own experience.

As you can see from the stats below, I've had a viral load >9 million, yet all the liver ultrasounds I've had, including the baseline one before Hep C treatment, were normal. It takes a different test such as a FibroScan (the experience is somewhat like an ultrasound) or FibroSure (a blood test) or a liver biopsy to get an idea how much fibrosis the liver may have.

-not sure what the shadow in the spleen area may mean, but in 1970 I had very low platelet counts because my spleen was eating not only my worn-out platelets but most of the good ones, too. I was treated with prednisone, which solves the low platelet count problem for most people. Prednisone treatment didn't work for me, though, so my spleen was removed in 1971. I have gotten along fine without it -- I don't have to take any medication or anything just because it was removed, and my platelet count has been fine ever since.

Best wishes,

Gnatty

[JuliaC]

Hi Gnatty!

Thanks so much for you reply, it was so very helpful.

I looked up the blood test, Fibrosure, and Fibroscan, and I really want to make sure my husband has both- or at least is tested with  Fibroscan, even if we have to pay for it out of pocket. It takes SO long for everything when dealing with the VA in our state.

I cannot completely understand your stats, but can tell that you are basically testing Hep free and that it's almost over for you! Congratulations!!!!! You have had a long road to travel.

Other than swelling in the feet and ankles and increasingly extreme insomnia, my husband has had no symptoms. Since he has quit working, cleaned up his diet and began drinking a lot of vegetable and fruit juices, the edema in the feet and legs is almost gone. Have you heard of people having insomnia with this virus? Currently he is not taking any medications. If it were not for the hepatitis, he would be in excellent health.

So, did you have Cirrhosis Stage 4? Has that improved since your treatment?

Yes, our heads are spinning (more so mine, I think- or maybe my husband is just the stoic one) and I know I will have many questions as time goes along. It really helps to have found people who have been through it and are now on the other side of it. Your post really helped. Thank again, so much.

Julia

[gnatcatcher]

. . . So, did you have Cirrhosis Stage 4? Has that improved since your treatment?. . .

Julia, glad you found it helpful. Yes, the Hep C (received during the splenectomy) may be gone. The results of the December 23 labs will determine whether I'm considered "cured" (with only a small risk of a relapse thereafter).

As to whether I actually have cirrhosis, as you see below, the 2 tests for fibrosis had very different results. The person who supervised my treatment thinks I don't have cirrhosis. The hepatologist who ordered the FibroScan was surprised by the F4 but thought since I'd had Hep C for over 43 years it might be correct. No test, not even a biopsy, is foolproof. I know that having a test say F4 was a big help in convincing my insurer to treat me.

Some studies (http://forums.hepmag.com/index.php?topic=3221.0) have found that people cured of HCV can see improvements in the amount of fibrosis, such that even if I do have early cirrhosis now, I could get back into the F3 range. That would save me from needing ultrasounds every six months to check for possible tumors. I'll be seeing the hepatologist on January 5 and will learn whether he plans to do another FibroScan and/or FibroSure.

I'm very glad to hear that your husband's edema is almost gone. Yes, people (myself included) have insomnia with HCV. Then, treatment may cause insomnia: with Harvoni, whereas some people experience fatigue, others (myself included) get a "Harvoni High" which provides lots of energy but causes a more hyper kind of insomnia. Now, post-treatment, I am experiencing for the first time in decades what it's like to sleep 8 hours every night.

Gnatty

[KimInTheForest]

Hi Julia. And welcome to the forums! I just wanted to say that insomnia is quite common in people with Hepatitis C. I have had insomnia (and Hep C) most of my life. I am now 10-weeks post-treatment (Harvoni+ribavirin), am probably cured, and am sleeping much better than I have in a long long time. Still some insomnia, but also lots of sleep each night now.

best,
kim