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Author Topic: Hep C new to forum Very much need some help  (Read 12240 times)

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Offline NZNicegal

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Hep C new to forum Very much need some help
« on: March 19, 2014, 09:29:52 pm »
Hi there, I have had Hep C for roughly about a year and a half. My husband has had it for about 20 years so I have studied quite a bit about it. I have been feeling quite ill for a while and have had bloodtests done etc and my doctor just can't find an answer. The main things are that my lymph nodes in my neck have been up for quite a few months, feeling very tired/lethargic, foggy memory/brain and the main thing that is stressing me out is hair loss/breakage. Just woke up one morning and it started to fall out, it's getting worse and the condition of it is also worse. I talked to my Hep C specialist the other day, she told me that my last viral load was 7000 and the one they just did was 2000 yay! So I asked her if all my symptoms could be due to my immune system fighting off the Hep, she said possibly but hair loss is unheard of. I remember reading all about the interferon treatment before my husband went on it and read that your body can make it's own interferon and one of the side effects of the treatment was hair loss. Has anyone else had this whilst fighting off the hep without treatment? Unfortunately New Zealand doctors don't know much about Hep C/treatment so I'm finding it very difficult to get an answer. I would very much appreciate any advice. I'm finding it very stressful losing my hair and if I just knew what was causing it I would feel a lot better about it.

Offline lporterrn

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Re: Hep C new to forum Very much need some help
« Reply #1 on: March 20, 2014, 12:27:38 am »
Hi,
The short answer is that I would have your doc look at other causes for this problem. Many of us have other problems that are unrelated to hep C, and although hep C does cause quite a bit of havoc, what you are describing sounds like it may be unrelated or a secondary condition. For instance, hep C may raise our risk of B-cell lymphoma (which I am not suggesting is your problem). I suggest you ask your docs to leave hep C out of the equation and to give you a proper work-up. Please pursue this proactively and let us know what you find out.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline NZNicegal

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Re: Hep C new to forum Very much need some help
« Reply #2 on: March 20, 2014, 08:41:08 pm »
Thank you for the info. Most of the doctors here in NZ just don't know enough about Hep C and they just seem to blame every condition that I have on that. It's really quite frustrating!! I have booked in to another GP for a second opinion so I hope I get somewhere. If it's stress causing my hair to fall out/break it would be nice to have a definitive answer to what is causing my other symptoms, it's easy for people to say "stop stressing" but it's really hard not to when you don't actually know whats wrong, once I know I can concentrate on de-stressing. All my doctor has done is a group of blood tests and referred me to a hair specialist, he is a good GP but I think he is stumped to what it could be. I so wish I knew :(

Offline Marysee

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Re: Hep C new to forum Very much need some help
« Reply #3 on: March 21, 2014, 12:12:26 pm »
Make sure they check your Thyroid, when I go hypo I start to lose hair. Good luck.

Offline lporterrn

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Re: Hep C new to forum Very much need some help
« Reply #4 on: March 21, 2014, 12:37:19 pm »
Marysee is right - good question to ask docs. Also, look backwards- if you had a fever, other medical problem, mineral insufficiency, or started a new drug around 12 weeks prior to hair loss, you may find clues as to what is going on now.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline NZNicegal

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Re: Hep C new to forum Very much need some help
« Reply #5 on: March 22, 2014, 12:55:56 am »
My GP checked my thyroid and everything is fine. It just came to my mind that about 3 months back I went through a very stressful incident so I do think that maybe the cause of my hair loss, thankfully my hairdresser can get me some special shampoo etc for alopecia which I am going to try. I do think my lymph nodes are due to my immune system fighting off the virus as I did ask the Hep C specialist and she said it definitely could be, so I take vitamin c and echinacea to help build up my immunity. Thank you for the helpful advice :) much appreciated!

Offline lporterrn

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Re: Hep C new to forum Very much need some help
« Reply #6 on: March 23, 2014, 03:38:12 pm »
Did your doctor recommend the vitamin C and echinacea? Those are 2 supplements to use cautiously with the symptoms you are describing and with hep C. Vit C binds with iron, so if you take or eat a high-iron diet, this may be problematic for the liver. Echin. is a no-no if you have any autoimmune issues going on, so be sure those are ruled out. Of all the things you talked about, it is the lymph nodes. There is a slightly higher risk of lymphoma with hep C. Lots of possibilities, so stick close to your doc until you get this figured out.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline NZNicegal

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Re: Hep C new to forum Very much need some help
« Reply #7 on: March 24, 2014, 01:44:07 am »
My doctor didn't tell me to take the vit c and echinacea, I just started taking it to boost my immune system. Could you possibly send me a link to what you are talking about? Thanks :)

Offline lporterrn

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Re: Hep C new to forum Very much need some help
« Reply #8 on: March 24, 2014, 11:23:41 am »
There are multiple sources for this - here are some to get you started:
http://www.nlm.nih.gov/medlineplus/druginfo/natural/981.html Scroll down to Precautions
http://www.hcvadvocate.org/hepatitis/factsheets.asp  Scroll down to Hepatitis C and Complementary and Alternative Medicine
http://www.hcvadvocate.org/library/herb_glossary.asp#e
http://www.mskcc.org/cancer-care/herb/echinacea
http://www.nlm.nih.gov/medlineplus/druginfo/natural/912.html - This mentions that vit C improves iron absorption - this means that dietary iron that you might ordinarily eliminate may now be absorbed - and the liver does much of the absorbing.
Keep in mind that everything goes through the liver (and kidneys), so everything you give them, means extra work - be sure that work is necessary for health.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline NZNicegal

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Re: Hep C new to forum Very much need some help
« Reply #9 on: March 24, 2014, 07:35:12 pm »
Thanks for that :)
I have just been to another GP to get a second opinion, she said as long as I don't take large amounts of Vit C and echinacea that it is fine to use. She looked through the blood tests my GP did and it looks as if the Hep C hasn't affected my liver very much at all, my liver enzymes are only slightly elevated, I looked on the screen and saw that he did actually check everything he could and everything was normal, checked for inflammation and that was only slightly elevated too, she checked my lymph nodes are said they feel fine, the lumps I was thinking were lymph nodes are some other glands beginning with p? As for my alopecia, it is stress related.
I also have type 2 diabetes which is well controlled (my mother died young as she didn't look after her diabetes, so lesson learned). I eat healthy and exercise, I'm not overweight so I think I'm just stressing too much about nothing. I have another appointment with the Hep C specialist in May.
Thank you for your advice, much appreciated :)
 

Offline lporterrn

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Re: Hep C new to forum Very much need some help
« Reply #10 on: March 24, 2014, 07:47:02 pm »
That stressing about nothing is human. I found it took time before I could let it go and start to live freely again. Sounds like you are on the road to freedom from worry.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

 


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