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Does anyone here have HCM as well as Diabetes?

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Ivan Find out more about Ivan
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  • Does anyone here have HCM as well as Diabetes?

    I am also a diabetic and I would love talk to someone who has both HCM and Diabetes. When my blood sugar gets high I get really winded.

  • #2
    Re: Does anyone here have HCM as well as Diabetes?

    I was diagnosed with HOCM in 92 and diagnosed with diabetes in 02. I am so screwed up right now, it is not even funny. I have not felt well in months and very desperate to feel somewhat normal. I am always looking for solutions in my quality of life and have come up empty each time. I am about to have my second ablation from a very well known cardiologist here in Michigan who is very familiar with HOCM/HCM patients. In two weeks I seean EP to double check both devices before I am scheduled for an Angiogram to determine the best possible route to go after a rebuilt septal artery. WOW

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    • #3
      Re: Does anyone here have HCM as well as Diabetes?

      I have HCM and am a diabetic on Glyburide and newly on Lantis – a long lasting insulin. I am also hyperlipidemic and renal to name just a couple of the other complications, but the thing that screwed me up the most of late has been my bleeding hemorrhoids. That just saps the energy right out of you. For a while there I could lay down or sit. Anything more strenuous, like getting up to go to the bathroom, would have me huffing and puffing like a steam calliope. I’m addressing the problems, and since getting out of the hospital on January sixth, (my seventh stay in eight and a half months), I’m feeling pretty darn good.

      When my diabetes was running rampant – had a recent hemoglobin A1c of 8.8 – and the world seemed uphill. That’s when I started the Lantis, and have gradually built it up to the current level. I feel much, much better now that I’m posting quite respectable blood sugar levels. You have to work slowly and carefully with diabetes or you could wind up going hypo and be mistaken for a drunk, or pass out altogether.

      Do you know where you stand on your blood sugar levels, and what are you doing about it?

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      • #4
        Re: Does anyone here have HCM as well as Diabetes?

        Well, I have you folks beat! I've got HCM, diabetes and tethered spinal cord as part of my spina bifida------

        My heart problems got much worse because I was taking Avandia. Don't take this medication! I switched in the Fall from the pills to insulin injections and "lost" 12 pounds of water weight in2 days. I'd been complaining about water retention for months and none of my Doctors thought there was any problem with my medications. I found out the truth about Avandia from the newspapers-----

        Injections are a pain, but I am convinced that it is healthier to inject yourself with insulin than to take the pills, which have all kinds of odd effects on the body.

        I had an ablation in May 2003 and with that success plus getting rid of Avandia, I'm feeling much better and I'm building up my exercise regime. I am now doing 30 minutes stair climber, 30 minutes treadmill, 30 minutes exercise bike at the gym every other day. I go somewhat slowly, as I always have, aiming for endurance. I am very pleased that I am able to do this much. I didn't think I'd ever get back to this level of exercise with all the problems and the 50 operations I have had. I'm now 57---and amazed that I have survived this long!

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        • #5
          Re: Does anyone here have HCM as well as Diabetes?

          There are many HCM patients who are also diabetic. As diabetes is so common it is exepected to see this happen.

          Best to all!
          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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          • #6
            Just now i have join with this community. Actually i don't have proper knowledge about diabetes. Before meal my blood sugar level 4.5 and after meal my blood sugar level 7.9 . Is it diabetes or not ? Please let me know. If it possible please you give me a blood sugar chart. I will join with you again. Thank you so much for your time.

            Regards

            Greek

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            • #7
              Dear Greek....
              This is a forum to support individuals and families dealing with the Diagnosis of Hypertrophic Cardiomyopathy( HCM). Though many people with HCM have diabetes coincidently, Diabetes does not cause HCM nor does HCM cause diabetes.
              If your concern is whether or not you have diabetes, I recommend you see a physician and discuss those concerns....He/She can order a simple blood test and give you guidance in that area. If you do indeed have diabetes there are many valid associations to connect with to get information and support from
              Best of Luck to you
              After years of symptoms:
              Officially Diagnosed HOCM 2006
              Myectomy 3/11/13 at non-COE
              Extended Myectomy 7/23/14
              At Mayo with Dr. Joseph Dearani

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              • #8
                Beta Blockers cause Diabetes. This is a known fact and can easily be confirmed through a simple google search...I really wish I had known this years ago.

                I never had a blood sugar issue nor does anyone in my family. I began taking atenolol like crazy after I was finally properly diagnosed with HOCM (about 150-200mg per day).

                I did this for several years until I had my septal myectomy in 2015, then kept taking a 50mg daily after surgery. During the years after diagnoses/pre-surgery my physician kept noting that my A1C and fasting sugar levels were increasing. I was even placed on a diabetic diet in the hospital when I had my surgery... I never had a sugar problem before the drugs.

                After surgery I was able to regain normal activity and my added weight fell off, I'm still about 15 lbs overweight, but I eat healthy and have done so for years.

                I started noticing skin problems last fall, and in Dec 2106 I checked my A1C and it was 9.2, I have not taken any prescription medication since Dec.(I spent weeks constantly monitoring sugar, BP, heart rate, etc... luckilly I didn't need them any more.) My A1C dropped a point every 6 weeks until it got down to 6.5-7, no other change in my lifestyle, except maybe a little more focus on watching carbs/sugar.

                I am still very sensitive to sugar, spikes well over 200 after eating and hard to get below 140 with 12 hrs fasting, but it's far better than it was earlier in the year. I am finally able to get to 100 or below if I fast for 24 hours or longer, it's been about 6 months since my last 3 day fast.

                Now 8 months later and I'm still struggling to try to get back into a pre-diabetic stage and eventually...hopefully...I may someday be able to get back to normal.

                I pray that those drugs didn't do permanent damage.

                I'm living proof that this is true, it's easy to verify out on google searches and finding links to medical journals/studies. I think there are some newer beta blockers that don't interfere with insulin response, but who knows what other side effects they cause.


                Point is...I was sooo happy when I first started taking Rx after diagnoses, because I was able to regain part of my life. However, if I had known what I would be dealing with today I definitely would have at least been more conservative with the drugs I was taking. So make sure you push your doctors for possible alternatives if you find yourself having side effects. I don't recall ever being told that the drugs could have been the reason for my sugar issues, this was something I only learned last December.

                BTW, After my septal myectomy 2 years ago...I felt better immediately, like I was 20 again. I'm 49 now.

                Last edited by Marko; 09-06-2017, 07:07 PM.

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                • #9
                  Marko, thanks for alerting us to the relationship between beta blockers and diabetes.

                  In the past, my blood glucose tests had always come out normal, with fasting glucose levels of 80-90.

                  However, I've had numbness in my feet, toes, and, to a lesser extent, in my hands, going back several years; at first I just suspected it was due to ill-fitting shoes.
                  This year, my PCP referred me to to a neurologist, who diagnosed peripheral polyneuropathy. After ruling out other causes and ordering blood tests, he concluded the most likely cause is diabetes, which somewhat took me aback. This time, the fasting blood glucose was 101 and the A1C 6.6; the results were replicated a second time. Over the past two years, I've been taking 50-75 mg metropolol/day, up from 25 mg before. This may or may not be the cause of the the blood sugar rise, but it certainly is consistent with what you've said. Apart from the numbness in feet and hands, I'm not aware of any symptoms other than fatigue--which most of us HCMers have anyway--and headaches after a few hours without food.

                  As I mentioned in an earlier post, I am scheduled for a septal myectomy on October 19th at CCF. I know there are a number of people here with both HCM and diabetes. Is anybody aware if the diabetes had any effects on the recovery from their surgery? The doctors at CCF are aware of the diabetes, but nobody expressed any concern about it with respect to the surgery, so is it reasonable to assume it may not be much of a concern?

                  Thanks for reading and for any observations/advice you may have.

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                  • #10
                    Hi Cat....
                    I am diabetic and had myectomy.....I'm also a nurse. Surgeons are very used to having patients with diabetes. The most important impact of UNCONTROLLED diabetes ( meaning running high blood sugars all the time) is that it can affect wound healing and susceptibility to infection.....That being said....Surgeons know this and they order very tight blood sugar control from the time you enter the hospital until the time you leave. It is possible that while in surgery and ICU that you will be on a closely monitored IV drip of insulin. This is because stress, such as open heart surgery, can cause blood sugars to go much higher than usual in diabetics. Once you out of ICU and are stabilized they will do frequent finger sticks, carb counts, insulin shots to cover your blood sugars before and/or after meals and you will probably get visited by a diabetic nutritionist to work on what you need to do at home......Believe me they will be all over it. At least they were at Mayo. CCF is the same type of high caliber COE.
                    Your diabetes is recent onset and rather mild from the information you gave....so it might not be quite as intense coverage as mine was....I've had diabetes for about 12 years and my A1C is difficult to keep below 8.But at least you know a little bit about what you might expect.
                    Last edited by JillC; 09-10-2017, 01:18 AM.
                    After years of symptoms:
                    Officially Diagnosed HOCM 2006
                    Myectomy 3/11/13 at non-COE
                    Extended Myectomy 7/23/14
                    At Mayo with Dr. Joseph Dearani

                    Comment


                    • #11
                      Hello, I am brand new here and grateful to be able to read all your stories, somehow I don't feel quite so isolated now! How I stumbled onto this particular thread is a mystery to me!

                      I have had Type 1 diabetes for 43 years with a number of complications, in addition to the HCM which was diagnosed in 2002. I was so relieved that I wasn't insane and there was a reason for the symptoms I had suffered from my adolescence!

                      Does anyone have any information regarding COE in Sydney, Australia? That kind of information will be very good to have on hand.
                      Thank you for this group, I now have a lifeline.

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                      • #12
                        Welcome CG....There is a section for new people to introduce themselves and tell their story....If you get a chance write a note in there. You might try calling the HCMA office. Although they only review centers in the USA they often have info for other countries.
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #13
                          Centers of Excellence are a North American thing, partly having to do with the strange way health care is provided here. But the expert in Australia is Prof. Chris Semsarian at Sydney U.

                          Gordon
                          Myectomy on Feb. 5, 2007.

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