Posted , 5 users are following.
I was diagnosed with inherited hemochromatosis and close to being anemic.My dr said he could not take blood for the hemochromatosis because it would cause me to be anemic and may not come back up.So guess I’m screwed.I don’t understand how can that be.Also I have high calcium and low on B12.
0 likes, 5 replies
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john57113 debbie_02669
Posted
Hi Debbie 02669,
Wondering what the treatment protocols are in UK?
Here in Arizona, USA usually treated by hematologists. They are also a pool of practitioners that practice Oncology. I don't understand your situation. If you have hemachromatosis you have elevated blood iron levels. And phlebotomies are standard treatment protocols in USA.
john57113
Posted
I would have labs drawn on Tuesday and then by following Thursday they would tell me if needed phlebotomy to get rid of excess iron.
Be sure if taking any supplements be sure they're iron Free.
sheryl37154 debbie_02669
Posted
You can have the genes for HH and be anaemic. Your dr is correct. I take it you do not have high ferritin levels. Your Hb must be low.
Eat dark green veggies, meat and add Vit C to your meals. This will increase your Hb to reduce your anaemia. People with active HH will throw their hands up in horror, but it seems obvious that your HH is inactive. At some time or maybe never you might start loading iron. So you need to keep being monitored.
A lot of people with HH also have coeliac disease, and are often anaemic because of this. Once their coeliac disease in under control, they often start loading iron.
If you are not absorbing B12 in the normal way and tablets don't work, ask for B12 injections. Also have your Vit D checked. If low, go for a good practitioners brand Vit D3 drops.
Having HH does not always mean you have a high ferritin and that you need venesections. So you are not screwed
miller.jones debbie_02669
Posted
You state you have low B12 then that would make you anemic for B12 what else are you anemic for?
If you have high calcium and low B12 I really hope the doctor you had seen is investigating because that is not normal and tends to be if a gland is not functioning correctly.
johan55235 debbie_02669
Posted
Due to my high ferritin count I have regular phlebotomies occasionally my haemoglobin/red cell count is low(anemic).My GP even wanted to put me on iron supplements which I rejected !! I stopped giving blood for 2 months and also had Vit B injections and took Vit D3 tablets which I now do regularly my haemoglobin now rebounds to normal levels within a couple of weeks allowing me to continue giving blood every 4 weeks.
Not sure if it was the injections but it did come right.
Make sure you have the active form of HH.My one son has HH but it is not active while my other is active.