starting therapy in a few eeks

[bbglenda]

On feb. 25 2002 I was given the gift (haha) of hepatitis c by a nurse who was reusing needles.  My counts have been okay for the past few years but have recently elevated.  I have to start peg-Intron therapy next month using the redi-pen.  Any ideas on what to expect....

[Califia]

Some people, usually of the female kind, are genetically predisposed toward autoimmune conditions.  My grandmother and father were diabetic, so maybe those genetics play a big role in my own immune response.  But who can say?

[layla]

I am not surprised at that. I'm sure my thyroid would be fine if it were not for the interferon. It obviously has a great affect on some of us. Why some and not others, who knows? I just wish the docs would monitor this much more. LL

[Laika]

Well...I said "relatively minor".  Loss of thyroid is definitely minor relative to loss of liver.  BUT.  I'm glad you posted this info.  I will state it more carefully next time.

I remember you mentioning that you were not stable on the thyroid hormone.  I don't remember anyone else saying that was an issue with them.  I was under the impression that the people here who lost their thyroid during treatment mostly suffered because it was undiagnosed...that once they got their thyroid hormone dose stable they were much better...of course, still had the interferon & riba sides.

This is true of the people in my family who just have thyroid disease--they mainly suffered because it was undiagnosed...once they got on the right dose of the hormone, they were fine.

Anyway, I do know from my family members how miserable it is to be hypo, and I surely do feel bad for anyone who has that to deal with on top of the interferon & riba sides.

Maybe docsgold, layla, others will check in and let me know whether they were able to get their thyroid stable while on treatment.  It would be good to know.

Laika

[bbglenda]

Thanks for all of the great advice.  My dr. has talked to me about the possibility of needing medicine for blood counts and I will talk to him about the thyroid.

In answer to the genotype I am 1A but I forget what level.  

I am sure you will be hearing from me often and I look forward to getting to know all of you.

[Califia]

Thyroid failure IS a big deal with major metabolic consequences.   Even with monitoring and constant dosage adjustment--I am now up to 250 mg of  Levothroid daily and am STILL hypo--the symptoms can be intense.   Beyond how it makes us feel,  impaired thyroid function makes for poor calcium uptake, leaving us vulnerable to osteoporosis, etc.  This is the case even when we are supplementing with synthetic replacement hormone.

This is not to dissuade anyone from treating, but in the interest of  objectivity it's only fair to report that the symptoms of hypothyroidism have definitely impaired my ability to think and work for the duration of treatment.   (Energy and concentration have taken a major hit.  I function better when I see a slight improvement in TSH, and then it slips again.)    The latest  problem, after 11 months of poor thyroid function, is constant muscle contraction and spasm, espcially in my feet and legs.  I'm fighting back with exercise but it's most unpleasant.  My feet are throbbing and  on the painful edge of cramping even as I type this.  It's a round-the-clock thing.

So for the record, thyroid trouble is a bit more than a slight inconvenience.   But it's still a small price to pay for SVR.

[layla]

You have been given some good advice which covers a lot so I'll just say welcome. LL

[Califia]

Here's a possible explanation: unlike the others, I entered tx with thyroid loss from previous interferon treatment in 90-91.   My current dosage instability was expected (but definitely not hoped for) because I already had autoimmune disease going in.

While we're on this topic and waiting for Layla and Docsgold to arrive, here are a couple more general comments.  Just as people with HCV don't necessarily have the same amount of liver damage, the amount of  actual thyroid tissue loss varies from individual to individual.   Some people have lived with a chronic autoimmune assault on their thyroid (Hashimoto's) for several years, others for a few months.   And chronic inflammatory conditions--of the liver, the thyroid, or any other organ--do significantly raise the cancer risk.   I totally agree with Mary Shomon [of about.thyroid.com fame] that autoimmune thyroiditis tends not to be taken seriously enough.   Medication is not a 100% solution, although it makes a huge difference in quality of life.

Speaking of which,  I wish you a benign shot and a very pleasurable weekend.  Well, we can dream, can't we?

[layla]

The average dose of thyroid meds is 125. Califia is taking a large amount but some people really need this (and I feel for them)and some only need a little. For the most part people usually feel pretty normal when their meds are right but getting them right can be a problem or just take some time. I know quit a few people on thryoid meds and most feel fine when the meds are at the right level for them. That said I also know someone who like Califia has many problems and her life is greatly affected by this problem. She did not have HCV. She suffers often and takes a lot of meds. For one thing just like with the progression of HCV thyroid destruction also progresses at different rates so while one person may feel fine on a certain med dose for years another may have to have constant changes. Just when you feel fine more thyroid goes and so on. I can tell you when I miss a day or two I pay for it but if I keep at my 100 dose I am fine. As for getting my thyroid stable on tx it did not happen  becasue I was not dx until close to the end and I tell you I am positive I suffered much more because of this. The thyroid problem for me was worse than the sx from tx. Before my throid went my sx were minimal. Docsgold was on meds on tx so she can comment more on that. LL

[Califia]

I probably should mention that my thyroid function was nice and stable before I started shooting interferon again.   My life off of tx is a whole other story.

[Laika]

I agree 100% with Snook's advice.

You will probably need to start treatment soon, but there are a few things more important than speed:

1)  Treatment is a pretty big deal.  You will need to be informed and committed.  Come here and ask questions.  Always request copies of all lab work and keep them in a folder.  If you don't understand any irregularities you see, ask your dr and ask here.

2)  A hepatologist is the most qualified specialist to have as far as educational specialty is concerned, but many of us treat with a gastroenterologist.  Hepatologists are usually found at big teaching hospitals.  A gastro is fine, but he should have a lot of experience in treating hep C.  If you are considering a gastro, find out how long he has been treating hep C patients and what percentage of his current patients are being treated for hep C.

3)  Most people experience a lot of side effects...if there's something you can do about arranging things to be easier in your life before starting treatment, it's a good idea.  The most disabling sides are usually fatigue and being fog-brained.  Depression is common, too--anti depressants can really help, I can attest to that.

4)  Your objective is to treat ONCE and make it count (achieve SVR).

5)  In the interests of 4) above:  You must investigate your doctor to find out if he meets your needs for managing your treatment.  You will be treating for at least 6 months, maybe longer, depending on your genotype.  You do NOT want to find out that you have a major disagreement with your dr about how your treatment should be handled when you are in the midst of treating and having some kind of issue!

6)  Some important things to consider with regard to 5) above:  The meds that fight hep C (interferon & ribaviron) may cause your red blood cells or white blood cells to become dangerously low.  Some doctors lower the dose of these meds or remove their patients from treatment when this happens.  Instead, you want a doctor who will prescribe Procrit if your red blood cells should become too low (boosts them back up) and Neupogen if your white blood cells should become too low.

7)  Some people lose their thyroid function in hep C treatment.  This is not a big deal -- EXCEPT if you don't know it.  The poor thyroid function is often masked by the other treatment symptoms.  It can be corrected by the correct dose of thyroid hormone.  Insist on having your thyroid tested often -- it's a cheap test, so there's no reason for them to put you off about it.

8) If your thyroid should fail during treatment, make sure your doctor will manage the situation by prescribing you thyroid hormone while still maintaining you on your hep C treatment.  You do NOT want to be taken off treatment for this relatively minor problem.

9)  Find out how often you will be tested for viral levels - your first test should be at 4 wks.  If he doesn't want to do it that soon, pressure him about it.

10) Find out how often 'regular' blood work will be done. Ask how often you will be seeing your doctor in person. Find out who will be your emergency contact.

11)  Ask how and when you will be receiving your test results.

12)  If your doctor balks at answering your questions or does not want to cooperate with you on the things you need--he's history!  These guys get paid pretty well to treat us and they need to meet our needs--not the insurance company's.  The first dr I tried did not want to answer my questions, did not want to give me the Pegasys and was evasive and unavailable.  I came to this  forum and posted, "does anyone know a good hep C  dr in the Tampa area?"  That's how I found the dr I use, and I'm happy with him.

That's all I can think of right now.  Come here, read, ask questions.  There's lots of support here.

Laika

[snook_man]

Have you had a liver biopsy? What is your genotype? These are some very important factors in determining whether or not to treat.. Usually it takes HCV many many years to progress, and cause damage.
As for the meds, every person reacts differently. I for one attempted with the redipen first, and was removed from treatment the first week. Ask your Dr for Pegysus. The side effects are much more tolerable, and the SVR% are slightly higher.. If you have a choice, insist on Pegysus..