iHi Jbelar,

This doctor is he your family doctor? you need to see a hematologist, and most deffinately should start phelbs with a ferritin of 231 and high iron and saturation it won't take long before it goes over 300 .. it works like this, your iron levels is what is in your circulating blood, the saturation means that 90% of the iron that is in your circulating blood will be stored into your organs which what your ferritin level is.

you need to get your ferritin levels down to around 50 and keep it there, I don't understand why these doctors are so dumb, if you monitor it over a year your ferritin will be up over 1000 and then you will have organ damage.. don't listen to him get yourself a specialist or a new family doctor..

I know alot of people on here have really bad expierences with doctors I have a good hematologist who is very knowledgeable and thank god I have an amazing family doctor who understands this disease and does not take it lightly when it comes to his patients..

welcome to the group

Meechie

The doctor i saw was a hematologist. I was surprised he acted so lightly about it and even told me i could go on eating and drinking whatever i wanted. I am scheduled to see a GI specialist next week so I am most definitely not done with this. How do I go about starting phlebs if the doctor won't recommend it? I thought about just going to donate but that can only be done every 56 days. He said it takes a while for it to rise that fast. I want another blood test done to see. This is upsetting. He doesn't seem to think I have full blown HH. I have sent him an email with several more questions. Thank you

This is all so new to me. I have been researching and waiting for tests and emails from docs for 3 weeks. I am scared of it all.

Hi jbelar, and welcome to our group. Your serum iron is HIGH (normal is 40-180) and your saturation is HIGH (normal is 25-35%). You don't indicate if your are male or female, but normal for a male WITHOUT hh Iis up to 300, and up to 200 if a female. You have genetic testing that shows you homozygous c282y and your doctor doesn't think you have full blown hh????? Either a person does not have HH, is only a carrier of HH, or they have HH. Primary hemochromatosis, also called hereditary hemochromatosis, is an inherited disease. Secondary hemochromatosis is caused by anemia, alcoholism, and other disorders. With primary hh we do inherit "mutated" genes, so I don't get what the doctor is telling you. Also, if he wants the rest of your family to be tested, then he is suspecting that it is priimary hh. Maybe he doesn't get it either. We have found that by and far, we find much more "accurate" info about hh from one another on this site then from almost any doctors. You should check our the following website www.irondisorders.com as it has an incredible amount of information, and a ton of great downloads. There is even a Hemochromatosis for newbies download. I TOTALLY agree with Meechie about getting a new doctor. You need to be getting phlebotomies immediately, and on a regular basis until your ferritin is at or below 50. And, by the way, while it is not common, you can actually get organ damage with a ferritin level significantly lower than 1000. So, don't wait like your doctor is recommending. You need to be your own advocate....unfortunately the doctors usually aren't. Take care and keep us updated on how things are going.

What do I do? I do have an appt with GI so I am hoping that I can get another opinion. I am terrified of all of this. It has caused a great deal of stress and all i want to do is get moving on getting rid of it. Why won't they just start getting rid of it???????? I just want to cry. HOw can i go about getting the phlebotomies without a doctors referral? I am a 33 year old female.

I have heard of GI's treating HH patients as well, explain it all to him when you see him and tell him your situation and say you want to start phelbs immediately.. if he doesn't want to help you , you will have to go back to your family doctor and get another refferal or find a doctor yourself.. I don't know where you live if it's in canada you will need a refferal from your family doctor if your in the US I think you can just get your own..

I am very shocked that a hematologist is taking it this lightly, obviously he is not very informed on this disease, sometimes you need to take the bull by the horn and tell them look, this is how its going to be..LOL I did that with my hematologist, I learned everything I could about this disease I went in their and told him this is what I want to do, and everytime he tried to give me some facts I threw way better facts in his face to the point where he couldn't argue with me anymore, he gave me what I wanted and now we get along just great...he was impressed that I knew so much about HH I told him all about this group.. now we actually have great conversations and he doesn't take me lightly anymore.

try not to worry, just get copies of all your blood work for when you see the GI, tell him exactly what is going and demand that he either help your or find someone who will.. just keep going don't give up and don't upset, get mad and take charge instead

jbe,
Ditto what they all said!

and find a site where you can donate a pint of whole blood WHILE you are waiting for all this to happen & fall in place.

In the US, we can go to the American Red Cross every 56-58 days. That's where I did my 1st phleb last yr as I, too, waited for results. I went in, completed their paperwork, let her do my vitals, did a finger stick to check my hemoglobin and they sent me to a chair. 15 minutes later I was done. I did NOT have small talk with them and I did NOT tell them I had HH and high liver enzymes.

I knew they would be doing a whole range of testing on the blood and if they found anything.... So what?! Let them throw it away! I didn't care, just as long as it was OUT OF ME! 4-5 weeks later.... I got a Red Cross donor card in the mail & they have called several times wanting me to come in and donate. Fortunately, My blood helped several people with that donation:)
My blood gets tossed away at my hemo's office:(
No FDA varience to use the blood:(
Good Luck!

zzzzzzzzz

JBELAR, Welcome to the group, My best advice to you is to stop stressing about it. That stress is going to be harder on you than the HH. Your numbers are not that high but if the drs are not ready to phleb you then go donate. HH is forever it does not go away and you can't get rid of it but you can easily live with it and live a happy healthy normal life as I do. I think monitoring once a year is not enough, You should test your ferritin once a month to see if it is going up and if it continues to rise then start your phlebs. You are your own best advocate and you cannot be a passive patient. Be firm and let them know what you want and need. Good luck and keep us posted.

I realize I can't get rid of it but I can start getting the iron out of m blood and it is pretty much driving me crazy. I sent my gp an email last night demanding she set me up for lab by today or tomorrow. I want to see where my levels are before I give blood, of which i have an appt on Saturday. I feel the doctors want to treat this in a reactive way rather than a proactive way. Since I found out with no symptoms and at a young age I want to get in front of it before I have damage. My GI is more than likely going to ask me if I am willing to do a liver biopsy. From what I am reading, doesn't sound like I should?

I let my doc do a biopsy ONLY after my ferritin had spiked (around 10,000). He wanted to be sure there was nothing going on (tissue to ck for cirrhosis/liver cancer, etc..) It was OK

Otherwise... NOOOOOOOOOO. I would just have the newer scan like the ferri scan. Unless something drastic changes, I will opt for a non-invasive approach!

zzzzzzzz

Ditto what everyone else said. They usually don't do a liver biopsy unless your ferritin is above 1000. As Wildforhim mentioned, check out www.irondisorders.org . There's lots of great info there. If you have any questions after checking that site out there are plenty of very knowledgeable people here that can answer just about any HH related question you may have. Try not to stress about it. Your numbers are much lower than many other people here had initially. You just need a competent doctor that's knowledgeable in the treatment of HH. Many people here have had to change doctors after the initial HH diagnosis. Myself included. When my first hemotologist started telling me things that conflicted with what I found out elsewhere, ie: www. irondisorders.org , it was time to change doctors.

As others have said, the stress is probably as hard on you as the elevated iron.

Go donate at the red cross, they will check hemoglobin before they will take the blood to make sure you are not anemic.

Since you have caught this so early, your situation may be as simple as donating at the red cross a few times a year saving lives and keeping yourself healthy. You may find that this simple step will keep your iron levels normal for the rest of your life.

If you cannot get your doctors to check ferritin, "Econolabs" will do it without a doctos order for $25.

Thanks for the info. I agree, if I can help not having to get into too deep,that's what I want to do. I am aware now and I want to get in front of it but these darn docs just want me to wait until something happends. Insane. I have my redcross appt set up for Saturday. I am hoping to get my levels taken before that but will check Econolabs. What is Econolabs?

ECONOLABS is web site and blood testing facility that I think is used by people without health insurance. No Doctors orders are needed and they are extremely reasonable. Here is the link for the website.

www.econolabs.com

Thanks. i submitted my inquiry for the lab locator. Which tests, besides ferritin, should I get done?