How did you convince your doctor to refer you to a geneticist? I have extremely high iron and several other symptoms of HH, but my doctor wants to send me to a GI for the abdominal pain instead of / before allowing me to get genetic testing. I’m down 130lbs in less than a year on accident and my blood sugar is being affected. I don’t really feel comfortable waiting for a GI to rule out a bunch of stuff before getting tested for HH.
Disorders of Mineral Metabolism
As I've stated in your other post there's no set way. Usually doctors will say I don't think that will help or someone that but you still have control. "Say something like can I get just get the referral" but if you're not happy with your doctor you can always switch providers. Geneticists are usually a last-ditch effort to find anything that they couldn't pick up with the at least that's my understanding.
I just kept getting bloodwork at urgent cares over time showing elevated iron and went to a hematologist as a self referral which my insurance allowed and they tested me for the HH along with a bunch of other stuff at first meeting.
Just found out I had this in March. The level are supposed to be between 30-400. My level where high than 1700. They say the only treatment is testing your iron levels weekly and give a pint of blood weekly to bring your levels down. Just wondering if that is what other people are doing? Also what organ is it effecting? For me it is my liver.
yup phlebotomies is only treatment. Hopefully you have decent veins. I have awful veins so I had to get a port for treatments and bloodwork etc.
I would go ahead and go to a gi doctor. They will do an upper gi and a lower gi
They both don’t feel good but it is the best thing for you to do. I am sorry to agree with your dr
Get a second opinion.
Ask your dr for a referral. If he won’t give it to you go to another dr. It is not up to them to tell you NO. This is my opinion I don’t have any problem with my dr. I tell her my problem and usually she tells me. If not, I tell her. She is s super dr
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