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BRRR......so COOOOLD.....is it meds?

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Blaine HOCM diagnosed and ICD since 1995, 2 myectomies Cleveland Clinic Find out more about Blaine
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  • BRRR......so COOOOLD.....is it meds?

    Hi,
    my husband had a septal myectomy a proximately one year and 4 months ago. He has been doing very well. He has also lost 45 pounds in the last year or so also by healthy dieting. Here is the problem. This winter he has been freezing. He has never had a problem with feeling too hot /too cold, etc. But this winter he has a terrible time getting his hands and feet warmed. Yesterday he actually went to bed for a little while to try and warm up. My question is do you think this is due to circulation? AND- is it possibly due to the fact that he lost so much weight, had the surgery and has felt so much better, and he needs to have his beta blocker reduced? He takes 160mg of sotalol 2x a day. He was taking this doseage BEFORE the surgery also. SO.........what do ya'll think????? Thank you, Rhonda
    Diagnosed with HOCM in 1995, age 36. First AICD same year.
    2 myectomies at Cleveland Clinic, 2002, 2005 with Doctors Lever and Smedira.
    Grandfather died suddenly in his forties. Nephew diagnosed with HCM.

  • #2
    Re: BRRR......so COOOOLD.....is it meds?

    Rhonda my doctor told me that it was due to the meds i get the same thing but i also have a problem with circulation in my feet and hands, but i would call his doctor he may be able adjust his meds to maybe help a little


    Take Care

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      Re: BRRR......so COOOOLD.....is it meds?

      it is my understanding that this can happen when you lose a lot of weight. and having poor circulation doesn't help either. he should get checked out just to make sure there isn't anything medical going on. (there is one weird, rare disease that makes you super cold, but i think mostly women get it.)

      otherwise, socks, sweaters, and hand warmers. a hot water bottle at the end of the bed near your feet is wonderful.

      heating pads are not good for you --too hot.

      s

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      • #4
        Re: BRRR......so COOOOLD.....is it meds?

        Hey we are all different,but I used to be warm when everyone else was comfy but since i started taking Betapace I freeze ,especially my feet.I haven't worn a sweatshrt in 10 yrs but now all most every day.couldn't wear slippers cause feet would get hot now wear them with socks all the time ( slippers are fur lined too).I think its the betapace ,but it has helped me so much that i will put up with being cold!!! Good Luck Rich
        Allways remember you cannot control the wind!!
        However you can adjust your sails!!

        Comment


        • #5
          Re: BRRR......so COOOOLD.....is it meds?

          He has been on sotalol for 8 years now, although in the past two years has been the biggest change physically for him in a LONG time. He lost all of the weight he needed to and also had the myectomy and went off Lipitor and Niaspan and the extra atenolol that they made him take after the surgery.
          Diagnosed with HOCM in 1995, age 36. First AICD same year.
          2 myectomies at Cleveland Clinic, 2002, 2005 with Doctors Lever and Smedira.
          Grandfather died suddenly in his forties. Nephew diagnosed with HCM.

          Comment


          • #6
            Re: BRRR......so COOOOLD.....is it meds?

            Sarah, what is the disease for women? I have hypothyroidism - is that what you are thinking of? One of the main symptoms of that is being very cold all of the time.
            Diagnosed with HOCM in 1995, age 36. First AICD same year.
            2 myectomies at Cleveland Clinic, 2002, 2005 with Doctors Lever and Smedira.
            Grandfather died suddenly in his forties. Nephew diagnosed with HCM.

            Comment


            • #7
              Re: BRRR......so COOOOLD.....is it meds?

              My hands, feet and all of all things, nose are always a battle for me to 'warm up' and keep warm. For me it's the beta blockers that do it. When I was in cardiac rehab post-myectomy, the exercise physiologists would just walk by and hand me a kleenex because they knew my nose was always running from being cold even when I was sweating otherwise.

              However, it's always best to check in with the doctor.

              House slippers around the house in the winter are a must now and help a great deal. For keeping my hands and nose warm, there's no good answer. But I'm considering having someone knit me a 'nose mitten' - !

              Stay warm!!
              Lynn
              Lynn Stewart
              HOCM 4/2002
              Cleveland Myectomy Crew 8/2002

              Comment


              • #8
                Re: BRRR......so COOOOLD.....is it meds?

                Is it Raynauds Syndrome or Lupus that we are referring to as the rare disease question? Just curious. My nose never ran (unless I had a cold) before the myectomy nor was I ever cold. Now I too am freezing and my nose is like a faucet! I take less beta then I did and have only lost about 15 pounds so far. I think I have less overall vascular congestion due to the removal of the obstruction and everything just perfuses better. I find the cold so penetrating I sometimes have to take an extra shower and make it hot just to get warm. I never would let anyone turn up the heat , now it's me doing it. I do find that when my fluid is up I'm warmer but uncomfortable until I get the extra fluid off .Just my 2 cents worth I thought I'd add. Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Re: BRRR......so COOOOLD.....is it meds?

                  I've always had cold feet, which i'd always attributed to poor circulation, and now HCM. It did get quite a bit more noticeable when i started on the beta blocker (atenolol). Funny thing is, the rest of me is always burning up, and in general i keep my apartment like a refrigerator. It's just my feet that never seem to get warm.
                  "Some days you're the dog... some days you're the hydrant."

                  Comment


                  • #10
                    Re: BRRR......so COOOOLD.....is it meds?

                    I've been on beta blockers or calcium channel blockers most of my life until a year ago. (Remember I don't have HCM.) Since I got off the meds I've noticed that I'm much warmer than I used to be.

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Re: BRRR......so COOOOLD.....is it meds?

                      I have also battled with being cold most of my life (even in the summer). I am not sure why this happens.... I'm going to ask some of the docs.
                      I will let you know what they say!
                      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)

                      Comment


                      • #12
                        Re: BRRR......so COOOOLD.....is it meds?

                        Thank you!
                        Diagnosed with HOCM in 1995, age 36. First AICD same year.
                        2 myectomies at Cleveland Clinic, 2002, 2005 with Doctors Lever and Smedira.
                        Grandfather died suddenly in his forties. Nephew diagnosed with HCM.

                        Comment


                        • #13
                          Re: BRRR......so COOOOLD.....is it meds?

                          Hi guys,
                          You’re all welcome to come to Las Vegas next summer. The days are almost always in the 120’s and can get into the 130’s. I think we can warm you up.

                          I’m in the Henderson phonebook and/or you can send me a PM. I’d be glad to show you where all the locals go.
                          Burt

                          Comment


                          • #14
                            Re: BRRR......so COOOOLD.....is it meds?

                            Yes, it is Reynaud's I was thinking of. Info here: http://www.lef.org/protocols/prtcl-128.shtml

                            I also just discovered this (http://www.wilsonssyndrome.com/index.html) today and it explains stuff that has been happening to me to a T!!!! Down to the letter. As many of us have hypothyroidism, I thought it would be good to pass along.

                            Sarah

                            Comment


                            • #15
                              Re: BRRR......so COOOOLD.....is it meds?

                              Sarah – This is the third time I have composed this reply, as it keeps getting eaten by the computer, but I will try to repeat my reply without forgetting anything.

                              I am also hypothyroid and have run across this Wilson’s Syndome before. From what I have read, this guy Wilson is somewhat of a crackpot, and is not in favor with the endocrinologist crowd. He apparently advocates treating hypothyroidism with T-3 formulations instead of T-4 which the standard formulations like Synthroid etc. are made from.

                              T-3 enters the bloodstream right away, while T-4 has to be metabolized by the body and isn’t used for like a week after you take the pill. T-3 can cause palpitations and things in people with normal hearts, so I would hate to see what it might do to someone with HCM. Some people think that adding T-3 is the answer to all thyroid symptoms. I used to visit the about.com thyroid board a lot, and lots of folks there are into Armour Thyroid and other T-3 compounds. I was always too afraid to try any b/c of my HCM.

                              My cardios always like my TSH to be at the high end of normal to avoid any possibility of palpitations caused by too much thyroid hormone. I would like my TSH to be a little lower, so I am careful to have my thyroid tested regularly and to see an endocrinologist who is aware I have a heart condition. I hope to get my TSH as low as 2, but if it winds up in the 3s, then that’s ok too. Right now I am increasing to 137 mcg. Synthroid from 125 because my TSH was almost 5. Personally, I don’t know how you separate out the symptoms of hypothyroidism from beta blocker and HCM symptoms anyway.

                              OK, that’s it. I have cut and pasted from word so I won’t lose this post.

                              Take care,

                              Cynthia
                              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.

                              Comment

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