Curious about symptoms

That's a lot of blood tests.  Obviously your new dr is checking out a lot of issues.  Surely they would include Iron Studies, and depending on those results, could lead to a genetic test.

If negative, go donate blood on a regular basis, as long as the Blood Bank allows any medications you may be taking for all those problems.

 

jennifer64197,

You have most of the symptoms that I had in the build-up to being diagnosed with HH (C282Y homozygous).

At diagnosis, 3 years after the menopause, my serum ferritin was 387 and my transferrin saturation was 89%.

It took 18 months of venesections for these to normalise - my haematologist keeps my ferritin below 50 and doesn't like it being above - she says I will have symptoms if it is higher than 50.

My skin is now a normal colour, I have no heart palpitations, my hip bursitis was treated with a cortisone injection and is much better, my headaches have gone, my skin doesn't itch so much, I don't snore any more and I sleep better.

On the down side, my feet and ankles were too badly damaged to be improved so I have mobility problems which I have to manage and my hair falls out a lot so I go to a trichologist for treatment every 3 weeks.

I hope you are able to have a proper diagnosis because if you have HH it can be treated and you can stay healthy as anyone else would.

 

Thank you both!  I had the blood work done last week for hemochromatosis and the genetic test. Still waiting for results. I definitely have all the symptoms, so anxious for the results!  I will post when I know more!

Well. Got my results back and dr says it is negative for hemochromatosis, and ferretin and trans-Ferrin sat was normal. He would not give me numbers over the phone. I have an appointment tomorrow to look at results. I just don’t understand...I have every symptom down to the bronze discoloration!  I don’t know where to go from here. There was no doubt that having a large amount of blood drawn made me feel so much better. 

Well. Got my results back and dr says it is negative for hemochromatosis, and ferretin and trans-Ferrin sat was normal. He would not give me numbers over the phone. I have an appointment tomorrow to look at results. I just don’t understand...I have every symptom down to the bronze discoloration!  I don’t know where to go from here. There was no doubt that having a large amount of blood drawn made me feel so much better.