What Should I Ask My Doctors to Check For?

[KimInTheForest]

Assignment for the Hive-Mind:

My post-treatment malaise has now lasted 9.5 months. It is definitely serious (the pathologist’s report on my monthly labs keeps saying so). And I need to get to the bottom of it if I ever want to get my life and health back, not to mention my ability to earn a living. I have 2 doctor’s appointments later this week – one with my GP and one with the liver specialist who oversaw the clinical trial that cured me of Hep C.

I know that none of us here is a doctor. But between us all, we know quite a bit about chronic Hep C, extrahepatic manifestations and associated viral infections, and the new Hep C drugs and their effects on the body. I am positive that some or all of those factors are connected to my illness. My current illness is not simply a consequence of a lifetime of Hep C. If that were the case, I would have been sick, disabled and unable to go anywhere, do anything or earn a living pre-treatment. I was fine pre-treatment. Now I can barely make it to a grocery store.

I know some of you will say: just let your doctors decide what tests to run, what conditions to investigate. But we are all in uncharted waters here, all of us who have recently been cured by the new drugs. And for those of us having serious post-treatment problems, doctors don’t necessarily know more than we do about the interplay between all these factors.

So I would appreciate it if people could throw ideas at me of possibilities I could suggest to my doctors, ideally things that could be confirmed or ruled out with a simple blood test. (Don’t worry, I won’t give my doctors a 100-item list. I will pick and choose.)

My symptoms wax and wane. But my primary symptoms these past 9.5 months have been:

•   fever (100-102.5 F)
•   drenching night sweats
•   enlarged lymph nodes
•   extreme fatigue
•   persistent dry cough
•   shortness of breath
•   iron-deficient anemia
•   low hemoglobin
•   low or borderline red blood cells
•   low platelets and White Blood Cells
•   low neutrophils (critically low at present)

Most of these symptoms arose midway through treatment and have never gone away. Fever began immediately post-treatment.

Non-Hodgkin’s Lymphoma fits that symptom list. And one of my doctors may refer me to a hematologist to have that checked. However, I have never heard of a case of a person developing NHL during Hep C treatment. The normal pattern is that people with NHL related to their Hep C find that it disappears after they are cured of Hep C. One of our members, who was on the same drug combo as I was, had exactly that happen. I asked him the other day what happened to his NHL. He said it’s gone.

I was tested for mono and UTI (urinary tract infection) months ago. Both came back negative. But I may ask my GP to give me the full set of 4 blood tests for Epstein Barr virus. Apparently you can have active EBV without it being mono. Not sure what the symptoms for that are though…

What other infections make sense to check for? Thanks.

kim

[kimlav]

Hi Kim,

I have been following your posts and I am sorry to hear you still are not feeling very well. I know it wasn't how you expected you would feel after waiting so long to be cured and to want it so badly. I hope your doctors can get to the root of it and get some targeted testing done.

I thought of a few things like a tick bite perhaps...for some of the symptoms. That might be a bit of a reach though.

Do you think that your problems are more related to Harvoni or more the Ribavarin? Or perhaps the combination? Some of your symptoms sound like the problems some have had with Ribavarin but what do I know. I just hope you get well soon.

[KimInTheForest]

Hi Kim. It is true that my blood-related symptoms seem to be more related to the ribavirin. And in my research I just came across a reference to "autoimmune hemolytic anemia". Hemolytic anemia is the type of anemia caused by ribavirin. It ends a few weeks after treatment, or is supposed to. But what if an autoimmune process took over and kept the hemolytic anemia going after the ribavirin departed? There is a blood test called "Coomb's direct" which can help identify autoimmune hemolytic anemia. So maybe I will see what my doctor thinks of that.

That wouldn't explain the fever, drenching sweats and enlarged lymph nodes, though.

Thanks for replying,
kim

p.s. Congrats on your undetected status!

[lporterrn]

Kim,
I want to help and support you through this. If I thought it helpful to suggest things, I would, but I have seen far too many times that some complicated illnesses need to be sorted out methodically by experts and sometimes it takes a long time (I have 3 family members who have 3 different rare disorders that took many years to diagnose). My need for certainty, their pain, my fear, all drove me down all sorts of wasted avenues, useless remedies, and endless Internet searches. In the end, all 3 were accurately diagnosed because the symptoms and labs all lined up and the right doctor saw them.

Am I advising you to be patient and take a step back? Hell no - I'd likely do what you are doing. However, the one thing I do advise is to avoid certainty. You wrote,

I am positive that some or all of those factors are connected to my illness. My current illness is not simply a consequence of a lifetime of Hep C. If that were the case, I would have been sick, disabled and unable to go anywhere, do anything or earn a living pre-treatment. I was fine pre-treatment. Now I can barely make it to a grocery store.

That is a logical conclusion but it may not be true - it may be a coincidence, and if it is, the certainty may be a distraction from finding out what is really going on. If at all possible, consider ALL possibilities - it may help your physician because when we tell them our history, we give more complete info when we haven't skewed the info by our certainty.

That said, if I get any bright ideas I'll send them along. I can think of a myriad of hematological disorders that fit the bill, and I assume your doc will look at them all. And I assume cirrhosis was ruled out?  Are your RBCs so low that you are taking EPO or needing a transfusion? Have you been scoped for a GI bleed (or had a stool sample)? Has your B12 levels been checked? When is your appointment?

[KimInTheForest]

Thanks for your reply, Lucinda. You make a good point. Yes, I did do a stool sample recently, and it was negative for occult blood. Did not go further and do a scope for possible GI bleed because I think that would have shown up on stool sample.

Cirrhosis has never really been investigated. My two fibroscans a few months before treatment were F3 and F2. But we know fibroscan results can be erroneous. Still, I thought a fibroscan was pretty reliable when it came to detecting cirrhosis - just not lesser stages of fibrosis.

My B-12 was okay but not super high back in September: 225 (ref range 150-650 pmol/L). I have been taking sublingual B-12 supplements (and 1 shot) since then, so it is probably a bit higher.

My RBCs are sometimes right at bottom of reference range (3.50) and sometimes a bit lower. So I have not been doing anything about that.

My hemoglobin is always below reference range. Usually 105-109. (Ref range 115-155 g/L)

Pathologist's comments on my labs from last week: "Pancytopenia with critical neutropenia. Consider cytotoxic therapy, immune process, hypersplenism or bone marrow disorder. A few tear-drop cells, as noted previously. Suggest close follow-up +/- hematology consult if indicated."

Pancytopenia has been noted in previous reports.

I have an appointment with 2 different doctors on Thursday this week - my GP, and my liver doctor who oversaw the trial I was in.

I will let people know what's up as soon as I find anything out. Would still appreciate anyone's ideas about leads to pursue. It was on these forums I learned about the 4 tests for EBV, and about sarcoidosis - an autoimmune disorder whose symptoms are nearly identical to Non-Hodgkin's Lymphoma. So I am a person who does find it quite useful to have the possibilities in front of me for consideration.

kim

[gnatcatcher]

Kim, given your recent pathology reports ("Pancytopenia with critical neutropenia. Consider cytotoxic therapy, immune process, hypersplenism or bone marrow disorder."), have you recently had a bone marrow biopsy &/or aspiration? An article from the American Journal of Clinical Pathology, "The Differential Diagnosis and Bone Marrow Evaluation of New-Onset Pancytopenia," details how a doctor might evaluate ALL possibilities: http://ajcp.oxfordjournals.org/content/139/1/9 Note that a hematologist wouldn't only consider Non-Hodgkin's Lymphoma. See, for example, the section entitled Autoimmune Disease.

[lporterrn]

Kim,
One more thing - I can think of a couple of explanations that are easily fixable - wanted to let you know that despite the scary words, there are some not so scary diagnoses.

[KimInTheForest]

Kim, given your recent pathology reports ("Pancytopenia with critical neutropenia. Consider cytotoxic therapy, immune process, hypersplenism or bone marrow disorder."), have you recently had a bone marrow biopsy &/or aspiration? An article from the American Journal of Clinical Pathology, "The Differential Diagnosis and Bone Marrow Evaluation of New-Onset Pancytopenia," details how a doctor might evaluate ALL possibilities: http://ajcp.oxfordjournals.org/content/139/1/9 Note that a hematologist wouldn't only consider Non-Hodgkin's Lymphoma. See, for example, the section entitled Autoimmune Disease.

Thank you for this link, Gnatty. That was the kind of thing I was looking for. And no, I have never had a bone marrow biopsy/aspiration, but I think it might be something offered/suggested by a doctor in near future. Have you had one? How bad is it?

Also I was thinking of suggesting an ultrasound of liver and spleen. If spleen is enlarged, that could certainly give an indication of where to start looking.

kim

[KimInTheForest]

Kim,
One more thing - I can think of a couple of explanations that are easily fixable - wanted to let you know that despite the scary words, there are some not so scary diagnoses.

I would certainly like to know what those couple of possible explanations are, Lucinda, so I can add them to my list, if you feel like sharing.

I wouldn't say I found the pathologists comments "scary" so much as an affirmation that I have some disease process at work in my body that needs to be identified. I cannot simply keep rolling along calling this some sort of post-treatment recovery period, waiting for things to get better on their own as I have been.

I understand the mindset that says "let the doctor do the thinking/investigating/diagnosing". But I have never been that patient. I am not going to become that patient now. I am my own best doctor always in all things. We all are. The doctor I visit in a room for all of 10 minutes maybe once every six months - that person is basically a source of lab requisitions and ideas and insights I might not come up with on my own, or is able to shoot a hole in my pet theory with six words. That's useful. But if I don't prime the pump during those 10 minutes with questions like: "Do you think we should do a full iron panel to see if the 600 mg I am consuming daily is going somewhere else?", "Do you think we should ultrasound my spleen and liver?", "Do you think we should test me for active Epstein-Barr Virus and Cytomegalovirus?"... then my 10 minutes with that doctor in that room will be poorly used and I will have less net information about what is and is not going on in my body.

best,
kim

[gnatcatcher]

Kim, I've had two. The Mayo Clinic has a good description of what it is like:
http://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/basics/what-you-can-expect/prc-20020282

I got the first one when a hepatologist was trying to figure out whether my extremely low platelet count was because my bone marrow wasn't producing enough platelets or because my spleen was devouring the good ones along with the worn-out ones it was supposed to devour. Since it turned out to be the latter, that ultimately led to the splenectomy during which I received the transfusions that contained HCV. Thanks to your pathologist, I now know that the fancy word for my spleen's voraciousness is hypersplenism. The dx in my case was ITP (an autoimmune disease), and it was only because prednisone didn't cure me that I had the splenectomy. Like Lucinda, I'm rooting for you to have something easily fixable.

HTH,

Gnatty

[FutureThinker]

Hi Kim -- My original reply didn't get posted, so will try again.

Your list of symptoms is your best bet to get to the bottom of this.  Trying to tie down an exact diagnosis too early in the investigative phase may well lead to missing the correct one. Happens all the time. I know I speak for all of us who have been following this thread that we feel your frustration at not having the quality of life you want (and deserve!) after beating the dragon HCV.

I'd like to suggest again that if you are not satisfied after meeting with these 2 doctors and their plans, to go to an academic hospital (if available) where many specialties are under one roof, to get another set of "new eyes" on this dilemma. It might be a drive for you, but could be worth the expanded expertise available.

Keep asking the questions and don't take "no" for an answer until you are satisfied and better! Keep us posted, FT

[JackN]

Hi - I found your update

I always knew I had HCV for years, never thought I would be approved for harvoni....but my pcp found a "m spike" and referred me to hematology (now have to see every three months from here on out unless my blood cures miraculously).  The hematologist said I had to clear the HCV virus and was suspicious my blood problems were related to HCV, and that with a HCV cure hopefully my blood would cure as well but also told me it could be two different issues we were dealing with. Note:  I was originally diagnosed with MGUS secondary to HCV. I also have mild cryoglobulemnia which was just tested again and is still mild (hematology also thought that would go away).

So here I sit, fatigued, no motivation to do anything, cold due to the cryo, depressed, etc etc too.

I had a bone marrow biopsy in October (more B cells but not enough to say lymphoma), I have had entire Skelton X-rays (testing for MM), ct scans (2 lung nodules they are keeping an eye on), blood work by the vials drawn, and I have a MRI scheduled in June of my liver.   Still no diagnosis. But I was told they were looking for a low grade lymphoma, WM, or multiple myeloma.  So far nothing definitive is presenting itself. I'm going to speak w my pcp about a second opinion w another hematologist. I tell you all this so that maybe when you are talking w your doctor it will help. My hematologist stated he was seeing many people w HCV have NHL or some lymphomas. If they could diagnose it quickly, they can treat and knock it on out.

[KimInTheForest]

Thank you for this info, Jack. That is helpful for me and the kind of reply I was hoping for on this thread - just some possibilities of what I could be dealing with. Information is power and all that.

I don't recognize all your abbreviations:

m spike?
MGUS?
MM? (multiple myeloma?)
WM?

Thanks again,
kim

[JackN]

Kim

The m spike is just that (pcp found it by testing Serum Protein Electrophoresis) which showed I had the m spike and they diagnosed it as secondary to HCV (but it's still there and HCV is gone) -

MGUS is monoclonal gammopathy of undetermined significance. It is associated with Multiple Myeloma (as a precursor but not always does it progress t multiple myeloma.

They thought my m spike was secondary to HCV which so far the blood work did slightly improve but it's still spiked along with kappa/lambda ratio (complicated for me to explain) but it is still there for me (drags / I wish it would all go away).

WM is a type of lymphoma. Waldenstrom macroglobulinemia. Rare kind but hey, if it's rare, seems like I would be the one to have it.

The entire body X-ray was done for the multiple myeloma. My bone marrow biopsy was done for lymphoma, leukemia, etc etc. (my mother had leukemia). 

[KimInTheForest]

Thanks for the further info, Jack.

kim

[JackN]

Good luck and I hope you get to feeling better

[KimInTheForest]

Good luck and I hope you get to feeling better

You too Jack!

kim

[I fightis thetitis]

Hi Kim,

Before I even finished your post I thought of Lymphoma testing.
A very dear friend has HCV and B cell Lymphoma. His symptoms mirrored yours and he underwent treatment and considered in remission. Prognosis is good.
It appears you are aware of the HCV/lymphoma connection.

In 1999 I too had a lesion on my face that was diagnosed as "worrisome" for cutaneous T cell Lymphoma aka CTCL. Because it was prob caught early and considered so rare there was/is no sub type name as of yet, (lesion removed) I panicked at first then got in a support group that educated me. I have been symptom free and in the clear since.
Chances are you do NOT have NHL but there are specific test and great new treatments that cure.
   
Here are the specific blood/image test to ask your Dr for to rule out NHL.
http://www.lymphomainfo.net/nhl/b-cell.html
http://emedicine.medscape.com/article/202677-overview

Lymphoma, which I know about all too well, has over 200 sub types. Some are so rare they cannot make a diagnosis other than "abnormal B or T cells" Sub types are still being discovered bc as your immune system battles the cells, they mutate several times to try and survive, and the cells NEVER die then take up residence in the lymph nodes. 
The main thing is to not freak out bc even if you have it, you are not going to die from lymphoma tomorrow, next week or next month. It is VERY treatable even the more aggressive types.

I so hope that you feel better and I will have you in my prayers tonight!

Best,

Greg

[KimInTheForest]

Thank you for this info Greg - especially the blood/image test to ask for to rule out NHL. I will admit that NHL was initially at the top of my list of theories. My symptoms fit it perfectly, right down to prolonged iron-deficient anemia. However, I have gone a little off that theory because:

a) the NHL commonly associated with Hep C usually disappears once the HCV is gone from the body, and
b) my liver doctor who oversaw the clinical trial I was in did not think that was the most likely scenario when I had a phone consult with him last week.

But I agree it is something that needs to be checked.

Best to you,
kim

[lporterrn]

NHL is one of the most common cancers there is, and although hep C increases one's risk, there are more people without hep C that have NHL than there are people with it. IOWs, freedom from hep C doesn't reduce ordinary risk of other conditions.

Although there are lots of things to consider, it is not that uncommon for people to be normally cytopenic. Nothing is wrong with them - they just don't produce all the components. In this case, often their levels are low normal for many years, then they dip to clinically insignificant levels before getting into really low ones, usually around age 60+. Often it is genetic. 

[KimInTheForest]

NHL is one of the most common cancers there is, and although hep C increases one's risk, there are more people without hep C that have NHL than there are people with it. IOWs, freedom from hep C doesn't reduce ordinary risk of other conditions.

Although there are lots of things to consider, it is not that uncommon for people to be normally cytopenic. Nothing is wrong with them - they just don't produce all the components. In this case, often their levels are low normal for many years, then they dip to clinically insignificant levels before getting into really low ones, usually around age 60+. Often it is genetic.

Very good to know, Lucinda. Thank you! Am continuing to see doctors...

kim