[Carito71 August 16, 2012 at 7:45 pm Post count: 333]

#1059290

Hello gatorgirly,

I’m sorry I just now saw your message in Katie’s post. I most have missed it somehow. I left you this reply there too but since I wasn’t sure if you would see it I thought I better open another post.

How are you doing? Did you get answers about the BB? Are you still on the Propranolol?

The Propranolol wasn’t regulating my Heart Rate (HR). It was working but I was having to take a pill 6 times a day and it was driving me insane. My heart rate was going up and down. I couldn’t sleep at night because it was elevated and in the day time I felt dizzy and like I was going to pass out. I needed something that would regulate and keep my HR constant, so my General Dr recommended Metoprolol.

I take Metoprolol once a day and I don’t even notice my HR anymore. The Metoprolol regulated it right away … even at the beginning when I was still very hyper.

I don’t really know what my LDL is doing right now but in Feb my Total was 210, which is very unusual for me. I was surprised as to how high it was. My General Dr. says that it is probably related to GD and wants to check it again once things have normalized.

As for the shortness of breath, I had it too with Propranolol but it went away with the Metoprolol. It could have been my heart being elevated all of the time or it could have been that the Propranolol affects the lungs a lot more than the Metoprolol. Do ask your Dr. about it. My heart is now in the 60s and 70s and it used to be b/w 114-124bpm without a BB but with Propranolol it would only come down to the high 90s. I used to run in the 60s before I got sick with GD symptoms.

Hope you feel better soon. Let me know how it is going.

Caro

[gatorgirly August 17, 2012 at 7:02 am Post count: 326]

#1173902

Hi Caro,

Sorry, just saw this post. I am still taking the propranolol – 10 mg a day each morning. I have an appointment this afternoon with a cardiologist, actually an electrophysiology cardiologist to be exact. I plan to talk to him about my heart rate, and the fact that my endocrinologist says there is no reason why it still races or why I am still intolerant to heat, always sweaty and out of breath 18 months after RAI and now hypO. I know my heart rate has come down because when I was first diagnosed, I was taking 20mg every 8 hours. It really put me into a fog where I felt like I was slipping into unconsciousness, so they dropped me down to 10mg every 8 hours, and I continued on that dose for a little more than a year. After RAI, I cut back to 10mg in the morning and 10mg in the evening. I needed it or else I laid in bed at night with a racing heart, unable to sleep. I was able to wean myself off the evening dose, but still keep a few extras cut in half because if I have a glass of wine within two hours of trying to go to bed, my heart is racing too much to sleep, so I will take 5mg. That’s annoying, so I pretty much stopped drinking my once or twice weekly glass of wine.

I also had a really high LDL at my physical in January 2011. I have not had it checked since because of my move and lack of insurance for the first half of 2012. It will get checked at my pre-surgery physical in September, but I have a feeling the cardiologist will order labs for it today. My endo and PCP both attributed the high LDL to propranolol. Upon diagnosis, when they ran all sorts of labs to find out what was wrong with me (with a resting heart rate of 170bpm or so and dropping weight by the day), my LDL was 100 “points” (can’t remember the lingo) lower than it was exactly one year later. During that year, I was not able to exercise much but cut junk food out, did yoga and walked a lot, and took only the PTU, propranolol and birth control (Yaz) for acne. PTU is not known to increase LDL and neither is Yaz, and propranolol can, so my doctors told me not to worry about my LDL. My HDL was in the “great” category so none of it made sense to me, but they didn’t appear concerned.

I will certainly ask the cardiologist about all of my symptoms and everything you’ve mentioned. I’ll post an update this evening or next week. I’m heading out of town in the morning for a wedding in Mystic, CT, so I may not be around a computer until Monday. Thanks for sharing your beta blocker journey and I’ll let you know how the appointment goes!

[gatorgirly August 17, 2012 at 6:50 pm Post count: 326]

#1173903

Hi Caro,

Here’s the latest. The cardiologist listened to my heart and ran an EKG. Both came back normal, and he said my heart sounds strong (I think it beats too hard!). He was puzzled by the hypER symptoms despite looking at my last few sets of labs showing I’m clearly hypO.

As for heat intolerance, he at first wanted to attribute it to being overweight since RAI and becoming hypO. I told him that was a totally logical explanation, except I have been heat intolerant this whole time: when first diagnosed, on PTU, after RAI when I was between hypER and hypO (but never euthyroid) and not yet overweight, and then once hypO set in. He said propranolol can cause heat intolerance, but because he never prescribes propranolol for his patients, he has no first-hand experience with its side effects.

As for the palpitations, he said some people are just extra sensitive to their heartbeat.

As for the shortness of breath, he said that happens with propranolol sometimes.

As for the fact that I still need this stupid beta blocker two-and-half years after my diagnosis and 18 months post-RAI, he isn’t sure.

The plan: next weekend, I will wear a continuous Holter monitor for 48 hours to see if my heart does anything wonky. He also wants to see how low my heart rate gets when I sleep at night and when I exercise and, this is my favorite part, when I drink a glass of wine. I told him how I can’t drink a single glass of wine without my heart racing. So he told me to do everything I would normally do in a 48-hour weekend period, and that usually includes a glass of wine. I just hope no one can see my wires. I’ve been on cardiac telemetry for every hospitalization in recent years because of the Graves, so I’m no stranger to heart monitors, but then again, I was in a hospital gown and didn’t shower for several days. Ha!

If everything comes back normal, he said he will switch me to metoprolol or something else. He doesn’t like propranolol. He suggested increasing it to see if that helps but I begged him otherwise. I want to be able to come OFF the beta blocker completely, not rely on it more.

One good thing is that he said either way, he is almost certain that even if there is an abnormality, it’s not severe enough to postpone my OD. With my dad’s a-fib, he said it could be that and that’s an easy fix.

[Carito71 August 21, 2012 at 4:12 pm Post count: 333]

#1173904

Hello gatorgirly,

I apologize for the delay. I had a couple of very busy days (work, etc). I’m so glad you got to see the cardiologist. I get worried about my heart and sometimes I think I should try getting an appointment. I know that for me it might still be a little bit early since I’m still on Methimazole and just last week was I told that my TSH back in the normal range (low side of it) and that my fT4 was hypo. I did notice that my heart started to slow down, even down into the 50s so I started to reduce the Metoprolol. I went from 50mg/day to 37.5mg/day. I’m hoping I can drop down to 25mg/day soon.

I’m glad your EKG came back normal. If your heart was in A Fib, he would have seen it there (unless you don’t experience it regularly). I find it interesting that he said that some people are extra sensitive to their heartbeat. Is that b/c your heart rate still runs fast with the Propranolol or b/c you feel it beating?

The Propranolol also gave me shortness of breath. I feel like the Metoprolol worked better in that department.

Its funny that you mention the heat intolerance. I have been feeling hot the whole time … hyper/hypo … no change. Maybe a little bit cold when hypo but I still get the hot flashes that drive me insane.

I’m so glad you have a plan and hopefully with the monitor, he can figure things out for you. I haven’t had to wear a Holter monitor but I would gladly would if it was going to help them diagnose heart symptoms. About 5 years ago, I had an Echo of my heart done b/c I felt like it was going fast at times. When I got to the Echo place it was running 110 but they didn’t worry about it. At the time I didn’t know much about the heart so I just went along with what they told me. The echo was normal and so they told me that nothing was wrong. I think it was probably my thyroid even then. I worry sometimes that my heart might be damaged. When they ran the EKG in June all looked good though. It was going very fast but it was normal rhythm. Of course the tachycardia was attributed to GD so I’m hopping that soon I can come off the Metoprolol.

It is interesting that your Endo nor the cardiologist know what to make of the hyper symptoms. I hope soon you find the answers your need. Mean while, keep doing what you can to keep your heart healthy. Let me know how it goes next weekend. I hope that if they don’t find anything at least they can change you to a beta blocker that works better for you. One thing though about Metoprolol, I’ve read that it can cause vivid dreams/nightmares, which I have been experiencing. A little bit less now, which might be related to the decrease in dosage. Anyway, I wish you the best this weekend.

I’ll read you soon. Thank you for sharing your experience.
Smiles,
Caro

[Carito71 August 21, 2012 at 4:22 pm Post count: 333]

#1173905

I forgot, the HDL is the good cholesterol so if that is at a good #s sometimes the Dr doesn’t worry too much about the LDL (bad cholesterol). My cholesterol was always good and my HDL was “high” (this is good) but last year I noticed a change. My HDL was still “high” but my total cholesterol was 210. This worried me b/c I have never had this problem. In June when I was diagnosed with GD both the ER Dr and my general Dr. attributed to GD. Anyway, I’m supposed to follow up with my general Dr once my GD is more under control.

Here is a page I think you will like:
http://www.heart.org/HEARTORG/Conditions/Cholesterol/AboutCholesterol/What-Your-Cholesterol-Levels-Mean_UCM_305562_Article.jsp

Caro

[Carito71 August 28, 2012 at 2:34 pm Post count: 333]

#1173906

How did things go over the weekend?

[gatorgirly August 28, 2012 at 5:12 pm Post count: 326]

#1173907

I guess my cardiologist and I were not on the same page about the Holter monitor. He told me to do what I would normally do in a 48-hour period on the weekend. OK, fine.

Half the reason I am seeing a cardiologist in the first place is because of my complete heat intolerance. I mean, I sweat going grocery shopping in the middle of winter. So as the nurse was hooking me up to the electrodes and told me not to sweat or get wet, I was like, “Excuse me?”

Fortunately I showered Friday morning before work, but I was pissed off. If the doctor wanted to see how I did living my normal life, this wasn’t going to give him an accurate picture. So I went back to work with my wires sticking out and literally hanging down past my knees. I went home, had a glass of wine simply to spike the monitor because my heart rate soars after one glass, and then went to bed. The next day, I cleaned the kitchen. Big mistake. My house doesn’t have AC, it was around 85 degrees, and like I said – I sweat all the time without exerting myself. A few electrodes fell off, but fortunately she gave me extras so I reapplied, took a mini sponge bath with some baby wipes, and then proceeded to lay in bed for the rest of the day doing nothing but watching trashy TV and making myself meals. I had a glass of wine again on Saturday evening, which is more than I usually drink in a week, but I wanted to show him how it made my heart race and pound.

By 2 p.m. Sunday, I felt disgusting and horribly lazy. I ripped off those electrodes so fast. I jumped right in the shower simply to feel clean even though I immediately went outside to do yardwork and then work out. I returned the monitor and the symptom “diary” yesterday (Monday) morning so I imagine I’ll have some sort of verdict by Friday.

All I wrote in the diary was that my heart raced and I felt jittery after one glass of wine, I had a few stabs of chest pain over the course of the weekend (likely just my GERD), and felt very weak and shaky Saturday afternoon. My skin also crawled and itched as if I was covered in fleas on Saturday night – that was weird and has never happened, but I wrote it down anyway.

Of course, last night, without any wine or anything out of the ordinary (just work all day and a 6-mile bike ride like normal), my heart was beating so fast when I went to bed that I needed an additional 5mg of propranolol. That never happened while I was wearing the monitor…figures.

[spenanelson August 29, 2012 at 4:53 am Post count: 33]

#1173908

Gatorgirly,

I feel for you. I was on propranolol for about two years 50mcg twice a day. I has a resting heart rate of 120 and it would spike horribly.

After my RAI, it finally went back to somewhat normal and would hover in the low to mid 80’s. About two years ago I had a major heart rate spike that lasted for about an hour and keep happening over the next few days until I was able to see my doctor. I too had an EKG and it came back slightly irregular but not worrisome to Amy GP. he put me on metropolo until I could get into to see my cardiologist. After two 48 hour monitors, stress test, and lot of other high tech heart scans, I was diagnosed with innapropirate sinus tachycardia. Which means they don’t really have a clue other than my wiring in my heart is off.

I now see an electro physiologist/ cardiologist. They think this was caused my the long term high heart rate that I had while myGraves was uncontrolled. It’s just one of those bad behaviors that my body learned.

I now take metropol twice a day and cardizem twice a day. And it seems to work. Every once in a while I have a really low heart rate and some days i can feel it trying to spike. My heart is still very sensitive to my thyroid levels. So we have to constantly manage it.

The good news is that we can adjust to what our body throws at us. I did start to walk and this really helped. I don’t walk fast but it’s like I’m retraining my heart to work properly.

Don’t let this get you down. Communicate with your doctors. Never let them settle with a non comittle diagnoses. Once you know that you are in control of your health, you will feel better. The stress of the unknown only makes it worse. Don’t get me wrong… I still freak out. But I know what my body is doing and I know it will pass and if not, I take a second pill and call my doctor if needed. Oh… Make sure you cut out caffeine- the slightest amounts sets me off.

Hope you feel better soon. You are no alone.

[gatorgirly August 29, 2012 at 5:38 am Post count: 326]

#1173909

I’m glad to know I’m not the only one. I think you are right in that although no visible or identifiable damage was done to my heart during my undiagnosed period of Graves, my body learned some bad habits. For example, being hypersensitive (aka palpitations) to my heartbeat. Sometimes I think it’s racing, and then I check it, and it’s normal but it feels uncomfortable.

I hope switching from propranolol to something else helps.

Also, interestingly enough, caffeine has no ill effect on my heart rate. granted, I take my beta blocker before breakfast, and breakfast is the only time I drink coffee. I don’t drink soda and allow myself dark chocolate only a few times a week, so almost 100% of my caffeine consumption is in very close proximity to taking the beta blocker. Exercise also does not cause dangerous spikes. I checked my heart rate just after I peddled up a steep hill last night and it was only 145. During more intense cardio, it gets up to 155-160, which is fine given my age (27), but I never feel uncomfortable when exercising hardcore. The worst is after a single glass of wine (which I never drink on an empty stomach) or during those random periods like Monday night when it spikes for no reason.

My cardiologist is an electrophysiologist as well. I look forward to hearing the results of my Holter. Thanks for sharing!

[spenanelson August 29, 2012 at 7:53 am Post count: 33]

#1173910

I have a feeling that you will be just fine! Keep the faith and keep fighting.

[Bobbi August 29, 2012 at 8:56 am Post count: 1324]

#1173911

Gatorgirly: You probably know more about this sort of thing than I do, but according to my Merck manual, palpitations are not necessarily dangerous. Some of us “do” feel extra strong pulses from time to time when there is nothing really wrong. I’ve always attributed mine (which happen occasionally) to a heightened nervous system, rather than to anything to do with the heart itself. Well, now I do. When I was hyper and feeling them frequently, AND having an extra fast pulse at the time, they did indeed cause me concern about my heart.

Also — again this may be information no one needs, but when you have been on a beta blocker for a while, you cannot stop it all at once. We need to WEAN ourselves from the medication, otherwise the symptoms that the drug has been preventing come bouncing back with a vengeance.

[gatorgirly August 29, 2012 at 11:12 am Post count: 326]

#1173912

Thanks, Bobbi. I do know all of that already Yes, the palpitations are annoying but they are just that – an awareness of one’s heartbeat. What concerns me is the heat intolerance and increased heart rate when I am just sitting around – both of which my endo and cardiologist agree cannot be caused (currently) by an overactive thyroid because my thyroid is no longer overactive.

My ultimate goal is to come off all beta blockers completely, but I would never stop taking any medication with a physician’s recommendation. I was originally on 10mg three times a day, so I have been “weaning off” for years now without being able to quit them entirely. Hopefully the test results can explain why.

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