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Hep C Discussion Forum -> Post Treatment -> Macrocytosis - Not out of the woods yet.
Post Info TOPIC: Macrocytosis - Not out of the woods yet.
Hep Me


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RE: Macrocytosis - Not out of the woods yet.
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Hi Annie, I'm also sorry to hear about the way you've been treated. I don't have the trust in my hep doc that I did going into this, so I know how you feel. I decided to stick it out until I get through post tx, but at that point if anything else comes up that I need a gastroenterologist for he's not it. As far as your eye probs, my doc did ask me how mine were doing and suggested I get an exam if they are bothering me. Take care, Randy



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Kirstin


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Thanks Annie

I have been experiencing most of what you described but the last couple of days have been alot better. I intend to discuss this with my Doc at the clinic though. I got a script for some eyedrops, hopefully they will work. I am actually wearing sunglasses while online & watching TV. Seems to cut down alot of the swelling etc when I do that. smile.gif



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Genotype 3a Started tx 11 May 2011 for 24 weeks. With scarring. VL before tx= 4 million.. UND@4 weeks. UND@12 
medusa


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Thank-you for all the responses to my little rant. In some ways I feel I'm making a mountain out of a molehill, after all tx is behind me now, and I am one of the lucky ones for whom it has worked. It does make me angry, though, the prejudice and false assumptions that are made about this illness, that it is in some way our fault that we are ill. Nobody purposely gives themselves HepC, and we should not be treated as second-class patients, however we may have caught it. Probably the majority of us got it from a medical source due to lack of basic sterilisation anyway, though I have yet to meet a doctor who will admit this. Thanks to the links given by forum members and my own researches I have now more information about macrocytosis, and see that it is linked to poor absorbtion of vitamin B12, folic acid. During my first pregnancy I had a severe problem with this for which I was hospitalised and given a transfusion of iron. My doctors were all told about this pre-tx. I seem to have a genetic tendancy for this which has been made worse by the chemo.

Hi Kirsten, to answer your question, my eye problems started about 4 weeks into tx. My vision became blurred, more so in one eye, I had constant irritation, like having sand or dust in the eyes (I still have), and a feeling of alternate dryness and running with tears. I also had/have an extreme sensitivity to light, and couldn't tolerate it even on dull days. I had flashes of light sometimes, like a strobe light being flashed in my eyes, not all the time, but every few days, and this lasted for a few minutes. The hallucinations I had on tx I put down to the psychadelic effect of the interferon on the brain, rather than the eyes. Lots of people get the side-effect of eye problems which go away at the end of tx, so don't worry too much about this, however it is a good idea to ask for an eye test just to make sure it is nothing serious. I was expecting this sx to go away as the drugs wore off, but it never has. My eye damage occured at the same time as a big drop in blood pressure, a known cause of retinol damage. Eye drops of a mild/ soothing type help with the irritation. Best of luck with the tx!

Just want to say hi and welcome to the more recent forum members, Kirsten, Greg, pj and Ron. I have been reading your posts and feel for all those now on tx. Bon Courage!  Hi to Jill, James and Lesley, survivors all, may life get better each day!

Love Annie xxxxx

 



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Kirstin


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Hi Annie, it must be infuriating to be treated this way & I am so sorry to hear that you are going through this cry.gif

Could I though, if it isnt too upsetting, ask you about your eye problems?. What symptoms etc. I seem to be having more eye problems then any other SX at the moment. I cant stand the light etc, so much so that my eyes swell & run constantly.. The soreness in them makes me feel lightheaded & ill.. Cause for concern do you think or just normal sx due to tx?

Thank you xxx



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Genotype 3a Started tx 11 May 2011 for 24 weeks. With scarring. VL before tx= 4 million.. UND@4 weeks. UND@12 
Greg


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Dear Annie,

I truly am sorry to hear about the way you have been treated by this so called doctor, how dare he!. Macrocytosis can be caused by a side effect of certain medications, such as chemotherapy drugs which is what your/our treatment is based on.  

http://www.mayoclinic.com/health/macrocytosis/AN01287 (Not much information)

We all are doing chemical chemotherapy and hope that if something goes astray, our doctors would inform us. You don't need this on top of your other problems, I hope you get satisfaction and some answers very soon. As Jill said it's great news about your liver doing so well. We are all here for you Annie.  heart.gif

Love and Hugs,
Greg



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The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
PJ


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I am so sorry you are having to deal with this.

Bad enough to have a condition that you didn't know about, without other clueless idiots making assumptions.

Hugs to you, pj

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Diagnosed in 2006. Probably infected in the late 70s or early 80s. Genotype 1B. Starting TX on 5/5/11 with the SOC and Teleprevir. 
borowif


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Hi Annie

Oh my god I feel so angry for you. How dare they make assumptions like that. Also not to bother informing you of this condition they write about.

I think its disgusting & I'm so sorry you have been made to feel like this. You have been through enough & dont need any more hassle.

Thinking of you

Luv & hugs Lesley x



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James10500


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I'm sorry this happened to you. I had a smiliar experience with my doc, he kept suggesting that I drank a lot. I finally got frustrated and said 'DUDE I DON'T DRINK'. as in from the time I was diagnosed onward. I think when they can't explain things they tend to assume the patient must be doing something to contribute to the condition they can't explain.

HA my first doc upon diagnosis asked me about prostitutes....omg how sad is that. I knew nothing about HCV at the time and felt pretty embarrassed to be accused of this. I still feel like writting that moron a letter about the transmission of HCV. But what's the point.

Good luck with the macrocytosis. I am sorry you have to deal with this, and are effected by it.

Best wishes,

James

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Diagnosed 4/13/10; Started Tx 8/13/10; SVR 7/27/11
Ron Gilbert


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Hi Annie,

I cant advise you on macrocytosis, I have never even heard of it.

I do like the last part of your post. I have spent a lifetime staying as far away from Dr's and hospitals as possible. It has worked quite well for me.

I can appreiciate when someone needs a Dr. and gets the help they need, but much too often Drs are on a witch hunt to "fix" things.

I watched my Mom take handfuls of drugs. My Dad had a stay at a hospital at age 82 and I'm certain they were trying to cure old age. His chart read like a manuscript and my Dad is a healthy person. After 24 hours I removed him against medical advise. My Dad is still drug free and doing very well, thank you very much.

Dr's tend to thrive on people returning and returning and returning. Its a cultivated dependence that they purposely instill in the patients to promote the medical system. The type of tx we are on is a wet dream for Dr's because of all the sx they can treat forever.

Not me, I am most likely healthy enough to recover from this tx and get glasses. After that I would be happy to never see another Dr again as long as I live. Just my opinion.

Ron



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Genotype 1a Diagnosed in 1991. Started tx April 27 2011 for 48 wks. VL before tx  1.6 - 4.6 million. RVR-week 4, UND-week 8 

Vitamin D3 suppliments can increase chances of reaching SVR. See Nutrition section for links.
Cinnamon Girl


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Oh Annie, I`ve just read your post and had to reply straight away.  What are those doctors thinking about, it`s unbelievable that neither of them thought to mention that finding to you, I really feel for you.

And then for your specialist to accuse you of drinking too much alcohol - what an assumption!  You must be fuming.  It`s bad enough to have your back and eye problems.

Sorry I don`t know anything about macrocytosis, but I really hope you get some answers soon.

You don`t deserve this Annie.  No-one does.

Lots of love and a hug, Jill xxx

ps That`s great news that your liver has done such a good job in repairing itself. Wonderful.



-- Edited by Cinnamon Girl on Sunday 29th of May 2011 02:41:06 PM



-- Edited by Cinnamon Girl on Sunday 29th of May 2011 03:52:49 PM

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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
medusa


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Just had my 6 month post tx appointment at the hospital on Thursday, and have been experiencing a resurgence of riba- rage since then, directed at my doctors. I was expecting the appointment to be nothing more than routine, as I am still free of the virus, and had been told that all my blood tests were normal, and that my liver had also been able to repair itself, going from level 4 fibrosis down to level 1, so I was feeling happy and very lucky. Nothing significant was mentioned by the doctor, except that he now seems to accept that the damage to my eyes (torn retinas, damage to the optic nerves, some loss of vision) and damage to my bones (arthritis in the spine) was caused by the tx, or at least occured during tx. This is obvious from x-rays and tests done pre, during, and post-tx. I had already accepted this as the price to be paid for getting rid of the virus. As I was leaving the hospital I was given a copy of a letter that the liver specialist I had just been talking to had sent to my general practitioner back in November. I didn't get a chance to read it until I got home, and was well pissed off with the contents. It is a general summary of the post-tx tests in the hospital done last November, which I was told were all fine and 'normal', though I have never been given a copy and seen them for myself. Apparently I have a condition called macrocytosis, which from what I have found out so far means that I have an abnormally high number of extra-large red blood cells, which causes problems with carrying sufficient oxygen around the body, and is associated with pernicious anaemia. This has never been mentioned to me by either of my doctors, and what really made me furious is that the specialist says  that he thinks it is due to drinking too much alcohol!!!  I am fuming because I know perfectly well that on tx, and pre- tx for many months I have not touched a drop. Even pre- finding out I had HepC I was never a heavy drinker, or ever had a problem with alcohol. What saddens me the most, is that I feel I've lost the good relationship and trust that I had in my doctor, built up over the past 3 years, and the long hard ordeal of tx. How can I have confidence in a doctor who seems to think that I am both an alcoholic and a liar? I have written a brief letter to him raising these questions. I don't really know what the implications of macrocytosis are, or even if I still have it. Has anyone else heard of, or experienced this? Is it possibly an anomally caused by my body rapidly trying to make new red blood cells after the severe loss caused by the tx?

I am now going to put all this behind, and get back to re-building my life post tx, and spending as much time as possible away from doctors and hospitals!

Love Annie xxxxx



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