Hepatitis C: Post Treatment Issues Community
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3093770 tn?1389742726

7 months PEOT and I can say I am worst than before tx - at least for now

Please read and comment if you have experienced any of my findings or if you tried any of the solution I am thinking of - knowledge is power after all

So 7 months PEOT: day after day I hoped that slowly, slowly things will improve. They slightly did compared with what was the worst during tx but so far my quality of life is way less than I ever had it before I started tx

I have started in Jan some investigation with the rheumathologyst and some of the results were positive indicating some immune activity but without a clear diagnose. I tested negative for lupus, Sjongrens and we are keeping an eye on it to see if it isn't an onset for a form of Artritits

I have done probably more tests that most of you will normally do and this is why I decided to wirte this post as I can see many of you posting and complaining of different levels of severity post treatment issues, with fatigue being a serious one

It might be a possibility that I have acquired a few extra problems due to the treatment:
So far I have this new issues:
1. Since end of Dec I gained 10 kg
2. Severe constipation and bloating no matter what I eat
3.Lack of sleep
3. Extreme tiredness - looks like my iron levels bottomed somehow

Serum Iron  umol/L   11   Ref Range (10 - 30)
Transferrin      g/L    3.3  Ref Range (1.7 - 3.4)
Transferrin sat        0.13  Ref Range  (o.15-0.50)
Ferritin         ug/L      22  Ref Range   (20-380)

4.  Possible thyroid issues although my thyroid values are in range?
However the antibodies are now positive?  I will have to ask to be tested for autoimmune liver disease as right now I am not sure of anything
Thyroperoxidase Antibodies 62 U/mL * (< 60) - possible Hashimoto?

5. High Cholesterol although the LDL, HDL and Triglycerides are all within range

6. Increasing sugar levels - I have always been somehow hypoglycaemic with HbA1c in 20s but now it is 37 after a 34 3 months back Ref range is <41  

7. Adrenals - Cortisol        291 nmol/L in the morning at peak time Ref range is Cortisol (Morning Peak) 200 - 700 nmol/L
So in the low side

78 Blood counts are not normal yet. Haemoglobin is 142 but platelets are still low 124, neutrophils are low - 1.5 and WBC low as well at 2.7
I would have expected that by now this values would have been up :(

I am not giving up just yet
These results can indicate more than one diagnose one of which is possible low thyroid - that would explain the tiredness, poor sleep, poor digestion, weight gain and even the low iron and some of the joint pain.
Well either low thyroid or perhaps thyroid hormone resistance

So I am thinking either iodine drops or dried thyroid extract plus selenium. I will start next week with that

I will check tomorrow with the GP what form of Iron to start taking and what dosage - no wonder I am tired with those values !!!

I start taking Wilson's Adrenal Rebuilder so I hope that will also help

I think I have been under immense stress in the last 2 years:
- diagnosed with lymphoma
- diagnosed with hep c
- treated for hep c for 48 weeks
- moved house
- change jobs
- mum just had a quadruple bypass a month ago ( only just made it - they had to open her twice) and is recuperating very slowly

Some of this can be a reason for adrenal fatigue, but the immune component I put it down to interferon !!!

Please share any of your experiences in taking any of the supplements I have mentioned and the results you have achieved
5 Responses
2059648 tn?1439770265
I remember that you had lymphoma in addition to Hepatitis C and cirrohosis.
I didn't have any thing but hepatitis C and at 7 months post treatment I felt like I was never going to get better.  We both treated on Incivek and I only treated 24.  Your treated almost a whole year.  

I went to the doctor some 20 times in the first year after treatment.  I had felt like I had aged 5 years in 6 months and every part of my body hurt.   These were pains I never had before treatment.  

I think it's at least a year before you get back to feeling somewhat normal.
I remember you started Incivek and then restarted it because you were having problems adjusting to the treatment.  

Diana don't get discouraged.  I think I just had to relax and except it might take a great deal longer than expected to recover.  

You had a rough go of all this.   It's amazing you got through it.  You don't have lymphoma or Hepatitis C anymore.   I think your recovery may take longer that normal.  No saying you won't get there.  I think you will.  
3093770 tn?1389742726
I never had cirrhosis, on fibroscan I have been diagnosed as a severe fibrosis with a reading of 10.5

Did I mention that my ALT is going up as well? Finished tx with 20 and now I am at 39
Well let's hope that some iron supplements will give me a lift
317787 tn?1473362051
Dear Diana I am sorry you are feeling so bad.  I would definitely get your free T3 and T4 tested.  Some doctors only test TSH when further tests are needed.  I know that the tx affected my thyroid.  It took me a while to find out because I kept thinking it was the tx.  I think the tx and the low thyroid plus the stress of it all caused me to lose 80% of my hair.

I can only share what happened to me.  I did 24 weeks of Incivek, Pegintron, Riba.  (It was much harder on me than the previous tx of pegysys, riba for 48 weeks)
It takes up to 6 months for riba to leave the body.  So...to me you would start to recover from the tx from that time.
I did not feel better until I got to 18 months.  I know it sounds like a long time.  When someone told me it could take a year I cried.
I think that it was a slow progression.  I noticed a good hour or two, then a set back, then a good day followed by  a couple of bad.  Slowly l noticed that I had one good day, of course followed by the bad.

Everyone reacts differently so it is hard to say.  For my aches and pains I tried calcium and magnesium as I wondered what deficiencies could have been caused the tx not eating righ and all that fat. I took daily vitamin without iron and hair skin nails supplements.

I tried everything I could find to get better.  I first tried NADH to wake me up give me energy.  This did work for a while and others on here tried it as well.  It helped them too.
Probiotics seemed to help, I ate a lot of yogurt as well.  Then I started taking prescription provigil just to try to get me started.  I quickly realized that while it did wake me up I would pay for it the next day. :(

I finished my tx Feb 2012.  For the most part I am doing well.  Unfortunately  life goes on, other illnesses or accidents can happen to hamper recovery.  There are times I have had huge setbacks or at least it felt that way after I had an operation or an illness.

I also gained weight after finishing tx.  One day I realized that I was not paying attention to my Diabetes so went back on the diet and am now losing it again.  Since getting back on diabetic diet I have lost 15 lbs.

To help your body, try to drink as much water as you can adding prune juice/more fiber to get your body back into the swing of the things.  The constipation can cause weight gain as well.

I understand the fatigue, I hate to say that I still have that.  I am always looking for something to help me with that.  Right now just working on the Diabetes.

Take care, my best to you, Dee
317787 tn?1473362051
Oh I almost forgot, walking.  I started to walk, slowly at first, even 10 minutes at a time to help your body heal. I am up to an hour now,  I also try to get some sun every day as a Vitamin D deficiency can cause a lot of problems.  I am sending you a link about it but there are many online.  I was told that Vitamin D deficiency can cause depression fatigue and other problems

2059648 tn?1439770265
Hepatitis C treatment itself taxes the liver.  Incivek, Ribavirin and Interferon are all toxic drug therapies.  I felt that the use of these very heavy harsh drugs had its price on my recovery.   I had a liver ALT of 39 for years and it was of no concern to doctors.   What seems to be causing you issues is low ferritin, low iron etc.   I would really have your thyroid checked by a specialist
if you haven't.  Doctors tend to do basic testing and come up with a wrong diagnosis when it comes to the thyroid.  Mine did.  I demand a specialist that resulted in a completely different outcome.  

Diane, at 7 months post treatment I thought the treatment effects were never going away.... It wasn't before 15 months that I saw real results my life before hepatitis C treatment was returning.  
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