Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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pat-strickland 02/02/2011

I have been recently diagnosed HH and am going through the phleb process every week. Years ago I learned that I was hypothyroid and have been on synthroid ever since. I now suspect that the undiagnosed HH for years probably played a role in causing me to have thyroid problems for years. Now that I am de-ironing my system I have had to reduce my synthroid medication twice in the last five months. Does anyone else suffered from both HH and Hypothyroid, and if so has de-ironing had an effect on your thyroid levels?? I'm even wondering if the HH originally caused the Hypo, then will de-ironing get rid of my Hypothyroid condition.

deleted_user 02/03/2011

I, too, am hypothyroid. I was diagnosed with it in 1992-93. HH wasn't diagnosed until 2010! I, too, suspect the iron probably paid a role in me being hypothyroid to begin with.

My Synthroid has been reduced once since I started my weekly (then twice weekly) phlebs. I was also diagnosed with a goiter a few yrs ago.

I saw my GI doc last week, to see if the dignosis of HH has changed anything and he said I am fine. No palpable changes in the size of my thyroid or goiter. He also said the hemotologist will send him my labs and will watch for any changes (along with my PCP).

If we are having a reduction of medication, I too think we will be able to come off it. I see my hemo today and will try to remember to ask. I'll let u know what I find out..

pat-strickland 02/03/2011

Thanks for your info. I'd be really interested to know what your doc says. Let Me know!
Thanks,
Pat

GageL 02/03/2011

I was also hypothryroid for several years before diagnosis. Went on synthroid until HH diagnosis and regular phlebs, now thyroid numbers are in the perfect range. Luckily caught in time.
GageL

pat-strickland 02/03/2011

Are you still taking Synthroid or were you able to get off your Synthroid?

GageL 02/05/2011

Pat, I am not sure that question was directed at me or not but for the record, when the thyroid numbers came back to the perfect level, I was taken off synthetic substances for both the thyroid and adrenal functions.
GageL

pat-strickland 02/06/2011

GageL,
Yes I was asking you. That's great that you were able to get off Synthroid. I have a feeling that if my next levels come back normal, my doctor will keep me on the same dosage of Synthroid that it tested out at as normal. I'm not quite sure what to do. Thanks for your info.
Pat

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