Hepatitis Forums
Hepatitis C Main Forums => Considering Hepatitis C Treatment => Topic started by: JoanneG45 on December 25, 2014, 03:00:14 pm
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Hi my name is Jo,
Was diagnosed 3 years ago. They reckon I've had hep C GT 1a TL 660,000 ALT 78 for 20 years. Also I may be hypothyroid and have coeliac disease. The consultant now thinks I'm cirrhotic and due to have a liver biopsy and ultrasound in March with the aim of starting treatment in about May. I hope the treatment will be only 6 months and not Interferon as I live on my own and suffer from depression.
While I'm waiting for all this I have changed my diet- Absolutely no alcohol, low fat, no sugar, no red meat and I take microhydrin antioxidant and other herbs- milk thistle, dandelion root, selenium, magnesium, vit B complex, L-methionine and Spirulina. I have more energy but still get headaches and still worried about my future.
Any helpful words would be gratefully appreciated.
Joanne xx
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Hi Joanne,
Welcome. Sounds like you are really taking action with your health. I am not a fan of supplements, particularly selenium. I am a huge fan of a clean diet, daily exercise, meditation and having fun. Hope you have these too in your life. Keep us posted as to what the biopsy results are.
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Hi Jo!
Welcome and Happy Holidays to you! It sounds like you are working on your health and that's really important.
As Lucinda mentioned she isn't a big fan of supplements, I am not either. For me its eating clean (stay away from processed foods), having some fun (laughter is still the best medicine), exercise when I feel up to it, getting outside and walking in the sunshine(not always available in my neck of the woods this time of year) but with your "reckon" I think maybe you might be in the south and able to still grab some sun every now and then!
I am also not a huge fan of biopsies and I'd ask about the Fibroscan or Fibrosure and see if that could possibly be an option, both of them are much easier on you. I had the Fibrosure test done, doctor ordered and test run at Labcorp. Fibroscan is a little harder to find but they are getting more common; haven't had one but sounds similar to an ultrasound.
http://www.myliverexam.com/en/lexamen-fibroscan.html (http://www.myliverexam.com/en/lexamen-fibroscan.html)
http://tinyurl.com/ngf9xdq (http://tinyurl.com/ngf9xdq)
I'd like to share with you that when I was diagnosed earlier this year they originally thought it was a thyroid issue and really put me through the ringer including a biopsy for a 1cm nodule and a few other expensive unnecessary tests. I even had one doctor look at me and tell me my eyes were bulging out and I had Graves disease. He wanted to put me on medication for it before he even had blood work to confirm it. The blood work confirmed that I did not have Graves disease and all the other tests showed that I had no issues with my thyroid.
I am not sure if you can get yourself somewhere that specializes in Infectious Diseases or Hepatology (blood doctor) and a Gastroenterology doctor for another opinion before you start trying to deal with everything all at the same time. It's bound to be harder on you and your liver if you start getting treated for Hypothyroid and celiac as well as the Hep C meds. If you think you may have celiac then try the celiac diet and see how you do with it, perhaps just eating cleaner will really help that. I am not sure why they want you to wait but I'd be out getting another opinion. I also got a second opinion and it was the best thing I could have done.
I'm a GT 1a with a starting VL of over 8 million, 9 weeks into treatment I was undetected!!! Woohoo!! I've probably had it for 35 or more years but we will never know nor does it matter at this point.
Drink lots of water, find things that make you smile, for me it's hard to meditate but I use essential oils to help keep me calm, lavender is a favorite of mine.
Take care of yourself and let us know how you are doing; we are all fighting right along side of you!
Hoping for a Happy and Healthy 2015!
Mel
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Hi Mel,
Thanks for your reply. I live in Luton, North of London, UK. So its all on the NHS which may restrict my treatment options! But at least its free!!!
My thyroid will be re-checked in Jan and having a biopsy for the coeliac disease to confirm or rule that out. I'm under a gastro consultant. He wants me to start hep C tx middle of next year. Hopefully only 6 months as I live on my own, suffer from depression( already had a suicide attempt) and I am worried about Interferon. Having the liver biopsy and ultrasound in March.
How is your tx going?
Take care
Jox
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Hi Jo,
I have good days and not so good days and waiting for the good days to turn in excellent days and the not so good days to disappear!
Sound like you have some challenges ahead but that the doctor has a plan so that's good. If you are comfortable with the doctor that's the most important thing.
I am not sure what's going on in the UK but in the US there are new options available for us that are interferon free. Perhaps that's what your doctor is aiming for, the new drugs to be more readily available in the UK. Many of us are now taking Harvoni and here is the information regarding the approval for your neck of the world:
http://www.gilead.com/news/press-releases/2014/11/european-commission-grants-marketing-authorization-for-gileads-harvoni-ledipasvirsofosbuvir-the-first-single-tablet-regimen-to-treat-the-majority-of-chronic-hepatitis-c-patients-with-genotype-1-and-4 (http://www.gilead.com/news/press-releases/2014/11/european-commission-grants-marketing-authorization-for-gileads-harvoni-ledipasvirsofosbuvir-the-first-single-tablet-regimen-to-treat-the-majority-of-chronic-hepatitis-c-patients-with-genotype-1-and-4)
This treatment and side effects are nothing compared to what many have had to endure for years and the cure rate is much higher. Harvoni has had a few options but most people now are either 12 or 24 weeks since in the US they are treating those sicker first. It's a very expensive medication and a little war is going on between the Pharma Companies and the Medical Insurance Companies.
I would ask him about the Harvoni and also why he wants to deal with the Celia before the Hep C. That way you will understand your treatment plan. You do know what he intends to do and when but seems like you may be missing the Why and that may bring you some comfort. If you can get that information along with what Hep C treatment he has in mind for you, your next step would be to discuss your concerns together and come up with the best road to take for you. Although the medical is government subsidized you still have free will and are allowed to have an opinion and input.
Also the Viagra Park was just approved in the US as well and may be headed your way. HTTP://www.Viagra.com/?CID=PCP_pod_Gil_HCV_Brand_Brand_Priority_above_Viagra_Park_Phrase_%20461603922 (http://HTTP://www.Viagra.com/?CID=PCP_pod_Gil_HCV_Brand_Brand_Priority_above_Viagra_Park_Phrase_%20461603922)
There's so many changes that happened the last couple of months and more and coming pretty quickly. Worrying doesn't help me, I would be reading as much as I could so next time I walk into the Doctor I would have a list of questions with me. I have done that multiple times to my ID Doc.
Stay strong, get yourself informed, eat healthy as possible, go out for a walk in the sunshine, laugh with friend and family and enjoy your life. Let us know how you are doing, what treatment you and your doctor decides on. We are here to help support each other :) :)
Mel
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Hi Mel,
Thanks very much. Yes I do enjoy life and laugh a lot. I have a lovely dog called Abi (a German Sheppard) and go for daily walks with her. I also do yoga and try to meditate! Mentally I'm quite good, physically not that bad either
God Bless
Jo x