Hi @SamanthaMech ,
Contact Chari Cohen. It was very kind of her to reach out to you herself, so I would take the opportunity if I were you. You got a ticket straight to the top, to get advice from The President of The Hep B Foundation.
I sent her a follow up email. This group, I am so very thankful for all of you! The experts and those who are just navigating through this. It is a blessing to have so many people here to help and hope
I am so sorry the insurance company are making life impossible for you. How horrible you are Going through this medical issue with your husband, and then for the insurance company to do This is just unbelievable.
At Christmas too.
It really has been a crazy emotional journey. I cannot believe the insurance company is being so obtuse. I have 90 days to file for the state hearing I am hoping it doesn’t come down to that though.
As if going through all the medical things wasn’t enough?!! I don’t know how many others go through this kind of thing, but I definitely can feel for them.
Well my husband had his first Dr. appointment of the new year today. The Dr. went over all the blood work he has had and explained that the reason he got so sick so quickly with the HepB is because he has Hemochromatosis. They also call it “iron overload”, a genetic disorder.
Hemochromatosis causes your body to absorb too much iron from the food you eat. Excess iron is stored in your organs, especially your liver, heart and pancreas. Too much iron can lead to life-threatening conditions, such as liver disease, heart problems and diabetes.
There are a few types of hemochromatosis, but the most common type is caused by a gene change passed down through families. Only a few people who have the genes ever develop serious problems. Symptoms usually appear in midlife.
Treatment includes regularly removing blood from your body. Because much of the body’s iron is contained in red blood cells, this treatment lowers iron levels.
So, he will continue taking the TDF but will also have to have blood removed from his body every so often. This explains a lot of other symptoms he has had over the years BEFORE he contracted HepB and why certain ones have gotten much worse since he contracted HepB…
The hits just never end…
I forgot to add… the liver specialist from Cleveland clinic reviewed the letter from our insurance company and said they are absolute idiots. He is sending a letter along with his clinical notes. He read a “summary” i sent with the information I sent to them and said that he is going to include that summary as well as his notes because that summary explains and meets the criteria for them to cover EVERYTHING.
At least that was a shred of good news.
Hi @SamanthaMech ,
Was your husbands hemochromatosis confirmed to be hereditary?
Sometimes acute HBV infection can cause iron overload symptoms consistent with hemochromatosis which slowly resolve with NUC therapy.
An interesting case report on this can be found here.
Yes it was confirmed. He has one genetic marker, H63D that he inherited. They are going to run some more tests very soon. US ELASTOGRAPHY LIVER, US ABD RT UPPER QUADRANT, HEP B VIRAL DNA QUAN, HEP BE ANTIBODY, HEP BE ANTIGEN, HEP B SURF AB QUAL, IRON + TIBC, FERRITIN BLD, and a CMP.
I like this list of tests…
He is also going to speak with his general Dr about the heart palpations now that we know they are related to the high iron…
the test results are in…
Ferritin 416.0 ng/mL
Iron 133 ug/dL
TIBC 353 ug/dL
Transferrin Saturation 37.7 %
Alkaline Phosphatase 119 U/L
Hep Be Ag Negative
HBV DNA Less than 10 IU/mL (<1 Log IU/mL) HBV DNA detected, not quantifiable. HBV DNA not detected by PCRHBV DNA not detected by PCR A
If I am reading that right, does that mean he is no longer contagious and has finally beat the Hep?
Your husband has responded to the TDF therapy very well. There is still trace HBV DNA in his blood however so he is technically still contagious (although very minimally so).
In terms of “beating the Hep”, he needs become HBsAg negative (at least for 6 months) before removal of his TDF therapy can be considered. Was an HBsAg test performed? It would also be nice to see his ALT.
While his ferritin is mildly elevated, his iron, TIBC and transferrin saturation are in their normal ranges. The presentation of his hemachromatosis appears very mild.
Hepatitis B Antibody - Positive
Hep Be Ag - Negative
AST - 23
ALt - 18
Bili - 0.5
When he spoke to the Dr on the 23rd, they mentioned taking him off the TDF if his numbers were good. If they take him off too soon, will he get sick again? Will it be worse?
ALT AST and Bili are great.
Is he really anti-HBs positive? This is a very positive sign but it should be confirmed that he does not have detectable HBsAg before they remove TDF. Ideally for 6 months.
Agreed with @availlant, these results look very promising. Do make sure that you are looking at anti-HBs tests (there are also anti-HBe and anti-HBc antibody tests) to clarify what his status is.
Hepatitis Be Antibody Positive
HBV DNA - Less than 10 IU/mL (<1 Log IU/mL) HBV DNA detected, not quantifiable. HBV DNA not detected by PCRHBV DNA not detected by PCR
Hep Be Ag Negative
Hep B Surface Ab Quant 28.10 mIU/mL >=12.00 mIU/mL>=12.00 mIU/mL
This is what it says on his tests from January 25th. He is still taking the TDF, but they did mention to him that he may not need to take it for much longer?
HI @SamanthaMech ,
Did his HBsAb increase from the last visit?
Be sure they do a HBsAg test. There is no approved quantitative HBsAg test in the US but there is an approved qualitative test. This should be be negative before they stop his TDF.
What was his HBV DNA test? < 10 IU/mL or bot detected?
I think they are going to retest him in either March or April? The results I posted above were from his January 2023 tests. They did renew his prescription for February and March.
I am just worried they may take him off the TDF too soon. He is doing SO much better, but I worry.
ALSO, insurance company update:
After all of their nasty letters and appeals that were denied, we were finally able to get a “healthcare advocate” assigned to the case. She spoke with his HepB Dr. and both Norwalk Hosptial and Cleveland Clinic and was able to say he should have been covered by all of the qualification standards.
She sent a rather nasty letter herself to the Insurance Company’s Dr that reviewed and denied our appeal about his lack of knowledge where hepatitis is concerned and his inability to read and/or comprehend Dr and hospital orders. She closed the letter stating that she wanted a State hearing with said Dr and the insurance company because of his gross oversights and demeaning nature to the seriousness of my husbands condition.
Needless to say, they have changed their minds and are paying the bills!
Fantastic news, @SamanthaMech! What a difference advocacy makes. I’m glad that it means you have one less thing to worry about.