Weight gain is out of control

[prbltyg]

I made my first post a few weeks ago around the 1 yr anniversary of my diagnosis. That was a fairly long post so I'll make this one short.

The Story of My Weight Gain:

[] Was 168 lbs in 1992 (mid 20's) and slowly gained weight each year/decade. Always worked out "semi - regularly" (at the gym mostly. Cardio mostly but some weight training as well).

[] As I aged, I probably ate more (I'm an emotional eater. Live to eat - not the other way around) and my metabolism slowed which contributed to the weight gain.

[] The day I was diagnosed in Dec 2014 I weighed 212 lbs. (which, at the time, was my "maximum density" and what I thought was contributing to my SOB. Probably a part of it, for sure.


However, here's the problem

[] NOW I'm 223 lbs!!!

[] I'm currently on 125mg Toprol XL (50mg in the am, 50mg around 2pm and 25mg at night)

[] I feel incredibly uncomfortable at this weight and not even sure how my body is supporting it.

[] I am fairly certain that my metabolism has significantly slowed (was never great to begin with) being on this medication. It's brutal. Doesn't seem to matter how much I eat, I can't lose weight and more than likely will continue to gain.

So, here are my questions:

[] What exercises should I do? I currently only do Pilates to keep my muscles active.

[] Drink more water? Or too much? Currently around 6-8 glasses a day.

[] BNP was relatively low - around 44 - when taken about 3 months ago. So I don't think I'm retaining or could I still be even with a low BNP?

[] Diet tips?

I HAVE to lose weight. It looks like I will probably need a myectomy in the coming year and I do not want to go into surgery this out of shape. I want to be in the best shape I can be in for surgery so I really need to lose some weight. 20 -30 lbs.

Thanks for reading.

Todd

[mbcube]

Todd - Welcome to the club. Here is my Dr. Phil moment. (Insert Texas drawl) "You gained the most and fastest weight after diagnosis. You say you're an emotional eater - do the math"
Here is my suggestion - Try not to focus on this, that'll just make it worse (emotionally and physically). Keep a log of what you eat for a week - You might find that your snacking more than you realize or having seconds. I know these two seem to be against my suggestion, but don't make a big deal of it. Keep a scrap a paper & pen to jot them down at night or the next morning log them in a book and try to put a calorie content to it (or do that later). My trainer suggested taking a photo of them with my phone. Whatever allows to you do it consistently.
Next - Walk more, Bike more, Swim more. Just try to add some activity to each day, maybe a mile at first, then maybe 2, then try twice a day. Just make it a habit. Good luck! I'm going to do the same = maybe we can PM our results in two weeks?

[JillC]

I will add just a quick reply to the BNP, water weight question. BNP is secreted when your heart muscle is stretched..... In general this would happen if you were going into congestive heart failure. However, you can retain water, developed peripheral edema or abdominal fluid accumulation with a normal BNP.... I do and require daily lasix. In general the thought is that something about HCM and or diastolic dysfunction stimulates the " renin angiotensin aldosterone " cascade..... Short version, you retain sodium and water. So keep an eye on your sodium intake notice swelling , monitor blood pressure...... This could be a contributing factor but very likely not the only cause of the weight gain.

[prbltyg]

Mbcube - great suggestion and will do. Started today and will reach out re results in 2 weeks or so.

Jill - I've always had a suspicion that I was retaining fluid - even before diagnosis. Do you have any suggestions as to how to discuss this with my Dr. when he has already told me that my BNP is low and to not worry about fluid retention? How best to propose trying lasix? Also, what are the issues, if any, with taking lasix and having HCM?

Thanks.

[gfox42]

Normally, if you're retaining fluid, it'll be evident by edema around the ankles. The standard way they assess that is by pressing a finger on the tissue; if it causes a pit, you're retaining fluid. Nothing fancy, but it works.

Gordon

[mbcube]

Edema can be more centered on mid section rather than lower extremities, especially in men - we're all different. I addition to the finger test - note your weight and tape measure your stomach.

[prbltyg]

Thanks Gordon. No pits in the ankles but definitely major "bloating". Mbcube - when keeping track of weight/tape measure stomach, what is the 'benchmark' I should be looking for?

[JillC]

Agree with Marc.... And it's not just men. I rarely get pitting in my ankles but do get it in my shins ..... When I lay down or sit with my feet up all the fluid accumulates in my abdomen ...... I look like a 67 year old pregnant woman!!
The measurement is relative......I measure around the belly button occasionally but I know myself well enough I can feel the increases along with the weight.. In general your morning naked weight is the lowest.... And the same with your abdominal measurement. I am on daily lasix so my lowest measurements are mid day after the lasix has worked.
In general, if you are gaining weight every day ..... It is water not fat.

[mbcube]

If looking out for CHF, water weight, etc., anything above 5 -9 lbs in a day is indicative of something. We all swing about 5 lbs a day, but for someone who is 5 feet zero and 98 lbs, this is significant. I have a pair of pants that, for me, are a good way of confirming a significant change.

[prbltyg]

ok - so it's been just over 2 weeks and the difference has been pretty incredible. I can't say I've lost a ton of weight (maybe 3-5 lbs - for which I'm very grateful) BUT I feel much, much better. Here's what I did - I cut out SUGAR (all refined. still have some fruit here and there) and things that act like sugar in the body (from what I've heard, like BREAD and POTATOES). It is fair to say that I have not really been SOB (at least noticeable) since I started this on Jan 1. I can only say that, for me, this is working so far. Clearly SUGAR (and probably other carbs like bread, etc) don't agree with me. I walked to (and from) the gym today - a walk I've made dozens of times before - and for the first time (hadn't been there in past 2 weeks until today), I had NO SOB. The walk back has some decent hills and no SOB. I knock on wood and will continue on this journey. I'll keep updating on this every once in a while. Thanks all for commenting.

[gfox42]

That's great to hear. A fair number of people with HCM report that they have trouble with carbohydrate-heavy meals.

[JillC]

Sounds like you are doing well..... And "white" foods, white sugar, white flour along with high fructose corn syrup and MSG are all culprits in not feeling well and weight gain. I actually wake up with black circles under my eyes if I've indulged on sugar or bread the night before. I missed your earlier question to me about lasix.....And maybe with your new eating habits fluid retention will decrease..........The end products of carbohydrate metabolism are CO2 and H2O which on a very simplistic level .......result in more breathing to eliminate CO2 and more water to get rid of ....if there is a high carbohydrate load. If you do need to talk to your MD again, bring a diary tracking your weight, your abdominal measurements etc.. And maybe some internet research...
Of course with HCM , you do not want to get dehydrated from too much diuretic like lasix as it can increase symptoms tremendously....It's a fine line to walk..... And if things are better and you can get along without a diuretic all the better.

[Redteamer]

Might want to read "The South Beach Diet". Very similar to recommendations here - written by a Cardiologist named Agatson in cooperation with a dietician.

[mbcube]

Todd - Glad you got some results. While I didn't keep a log, I did make a conscious effort to be aware of my eating patterns - and boy, when stressed, I'm a chocolate fiend! As to sugar - good move. I had a discussion with my internist on joint pain and I'm going to try to stick to a more Mediterranean diet and see if that helps me.

[JillC]

I don't think I have seen thyroid mentioned in this thread....Its important if you are gaining weight and feeling sluggish to get thyroid testing done. If there is a problem with low thyroid function.... Being on proper medication will facilitate your weight loss efforts. Incidentally, low thyroid function or hypothyroidism causes fluid retention also.