Fibromyalgia Community

I DO - I DO!

Hemo... is a genetic condition. You can get one gene from one parent (like my sister did) or a gene from each parent (that's me!). You will show elevated red cells because your liver doesn't get rid of the iron like it should. I give blood on a schedule by prescription. If left untreated, your liver will degrade, also known as cirrhosis.

If you have it, and must give blood regularly, ask around to see if they will use your blood or if they will throw it away. The American Red Cross and most hospitals will trash your pint. I'm in New England, and I go to the Rhode Island Blood Center. They have done the research and will use your blood. They are a terrific group, and I'm not so freaked out about having a big needle stuck in a vein!

Here's a link to wikipedia - my doc said it's a good reference:
http://en.wikipedia.org/wiki/Iron_overload

Lou

I've also been told I have a fatty liver, is that part of it too?

How old were you when you were diagnosed? Did you have liver damage? Did you do a liver biopsy?

Fatty liver is definitely part of Hemo. The liver can't get rid of the iron, and (if I understand right) it hangs onto the fat so it won't get damaged. (Anyone with better info, chime right in.)

I was not quite 50 when I was diagnosed. The blood doc told me that it's usually diagnosed in men in their 30s, and in women in their 50s. Think about it - we girls have a 'monthly phlebotomy' until menopause. Me, I had a hysterectomy in 2007, and two years later there was my fatty liver showing off in a blood test.
Lou

Did you have a liver biopsy to check if damage was done?

Good morning,


I don't think the red cells are used and I actually thought they did plasma phoresis on these patients and phlebotomy on those with polycythemia (too many everything).

Meaning they wash your blood of the red cells carrying the iron and give you back the clotting factors, white cells platelets plasma etc.....there is alot in BLOOD. But it is not my field.

I am also pretty sure they don't use it, it is not *right. The cells are incorrect and the useful part though is what I just said...everything around the red cell. This is an interesting conversation and I will ask at work about it.

It is good to get the biopsy of the liver to see where the liver cells are at, even as a baseline prior to beginning therapy, to be sure this is the cause of the issues.

Fatty liver can come from a few things and it does need follow up. A Good liver man in your life is important, this is a very important organ in your body....you can do without the spleen, but not the liver he is a very busy guy.

Good luck, glad you were diagnosed and I bet you feel better soon. BTW Phoresis is like dialysis, you are in a chair and they hook you up with an IV and remove blood and return blood as the machine separates all of it out......it is amazing stuff. People who donate only platelets or give plasma do this in the blood bank on appt and the machine takes their gift and gives back the other. A blessing our technology.

Ask questions of the doc and the phlebotomy staff...ask questions , plenty of questions. They do this all the time and can explain it to you. Best of luck, Nancy B

I hope you start feeling better with treatment. This could mean a nice turnaround in how you feel. Let's hope.

Thanks So much!! I'm so nervous about the liver biopsy. I'm not so worried about doing the blood draws but the liver biopsy makes me want to pass out!! I'm just curious if anyone has had a biopsy and how bad it was? Also what do you think about the damage that could have been done to my liver seeing that I've had this for 32 years before I was diagnosed. I also have pcos so I don't have a monthly period all the time. Doesn't help with iron level!! Thanks for any input!

The liver has great capabilities to regenerate itself, this is how we are tranplanting partial livers from parent for children etc....it will fix itself after the stress. Some cirrhosis from drugs and alcohol though...they are a little different.

The "punch" biopsy for the liver is done under local anesthesia and it is fast. They numb the skin and use just a little bigger needle to (actually...puch in to the liver fast) and take just a line of cells into the needle. Then they are looked at under a microscope. It is fast and gives alot of information. Many were done in the ICU with me at bedside.

Just hold the hand of the nurse near by, I am sure they will offer it anyway! <3. Fear of the unknown can be hard...I hope I helped......

Don't be scared....this is the beginning of your tune-up....it IS GOING TO BE A GREAT YEAR!

Take care, Nancy B

My SIL is 49 & she just got diagnosed last 2 weeks with this. She did have a liver biopsy, but she didn't really say one way or another about the procedure.

However, she had her biopsy done during surgery to remove her gallbladder (no issues with it, but she had a polyop that need to be looked into) .

Other than that she does not say much about it & is fine. I do know from another friend who has it that she had to give blood I think every 3-4 weeks, not sure.

Both of theirs is genetic.

Thank you so much Nancy! I'm glad the biopsy is fast! I'm hoping this is finally the year to get me fixed up!!

Thanks!! I'm so worried about how much damaged it has already caused.