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HCM, concurrent with skelatal and or endocrine disorders.

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Tom Scott Find out more about Tom Scott
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  • HCM, concurrent with skelatal and or endocrine disorders.

    My family is rife with HCM but thankfully relativley mild issues. However, we have several famiy members who have had pituitary tumors and thyroid problems. In addition a couple of us have muscle and skelatal issues ie my mother and myself both have some mildy shortened fingers (brachadactyly). Also overly loose tendons (whatever the medical term for that is)

    We were studied genetically by NIH and last we heard they found something of interest on chromsome 5 (I would not recommend NIH).

    Though my heart muscle is fairly thickened, I have done reasonably well with different blockers, the current one being Verapamil. I have less ischemia and am less short of breath.

    I urge evryone who even go to the dentist for a teeth cleaning to take preventive antibiotics) My brother had a serious bout with endocarditis. Good luck, Lisa---you are doing a great job.

    Tom

  • #2
    I also have HCM and Hashimoto's Thyroiditis. I have heard of others having both also. I also wonder how many people have both and if there is a link.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      I think its very interesting, apparently HCM has not been previously identified on chrosome 5 in which thre are endocrine genes on that chromosome.

      I have thyroid anti bodies and I do not know what that means and several years ago I had thyroiditis.

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      • #4
        thyroid hcm

        Dear Tom,

        HCM is still not well understood, despite our advancement from "IHSS" and so on.

        There do seem to be a lot of HCMers with thyroid issues (before they go on amiodarone) and I am one as well. I also have a couple other things that are auto-immune related. And some forms of cardiomyopathy can be auto-immune related, too (not any HCM that I know of, however).

        I think we will see a lot of interesting info come out in the next 20 years.

        The HCMA doesn't recommend the NIH, either. They are legally bound to tell you the results of their study on you, I believe. Are you sure it was HCM-related---that 5th chromosome thing?

        Glad you found us.

        Sarah

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        • #5
          Tom,

          I think that if you have thyroid antibodies, that means that you also have Hashimoto's disease. That is how they identify it. It can cause both hyper and hypo thyroid states, and some folks swing back and forth. I have only been hypo myself.
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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          • #6
            Thanks, I agree with the above, sometimes I think the medical community ignores symptoms and lab results that do not make sense to them without much "diggin"---I thought of seeing an endocronlogist but at this point say the heck with it as I doubt that many focus on any more than diabetes and common thyroid issues.

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            • #7
              Sarah -
              Tom Scott is one of the older members of the HCMA - I have known Tom for about 6 years or so... I have not seen him on the board in a long time and welcome him back with a BIG HELLO!

              Sincerely,
              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

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              • #8
                thyroid...

                I, too, had a thyroid (overactive) problem years ago...had a thyroidectomy.....around the same time I was told about my HCM. My father had thyroid and HCM....my mother also had a thyroidectomy but no HCM history in her family. I've been after a brother of mine to please have an echo done.....he and I have the same things medically wrong thyroid problem). I wouldn't be surprised if he has HCM and doesn't even know it!
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

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