tired: I have Hypertrophic... - Atrial Fibrillati...

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tired

johnthompson profile image
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I have Hypertrophic Cardiomyopathy and have developed A Fib. am treated with a cocktail of drugs which seem to be causing more problems than benefits. I now have trouble lifting 40 lbs where 5 years ago I rebuilt and built a couple barns on our property. My libido is non existent and I am loosing my body hair. I have tried to find info on the combination of drug interactions but alas they only come in pairs not quads. Here is the list Metoprolol, Lisinopril, sotolol, hydrocortothiazide. warfarin, and aspirin.

All blood work is normal except Testosterone levels. Could these drugs lower this level and cause those other symptoms? Doctors just had to do a sleep study to generate a fee, but i sleep just fine. Has any body gotten off the drugs and noticed improvement?

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johnthompson
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fuzzflyer profile image
fuzzflyer

YES.. and my doc has just suggested strongly that I take a second drug, Amiododrone !!! I just cannot imagine how anyone knows what side effects you may get from two drugs, I do have to agree that Warfarin seems the only answer for many cases but the second drug I feel is getting too complicated.

I stopped statins 7 years ago, best decision I have ever taken.

Though others have no issues.. so its horses for courses.

CDreamer profile image
CDreamer

Taking any drug I believe involves risk of side affects never mind a cocktail! My view is that there needs to be a risk / benefit assessment conversation between you and your doctors so you understand fully their purpose and what could happen if you stop any one or the cocktail and what alternatives you may have.

I took Bisoprolol and Flecainide and stopped them recently after ablation, about a month before my EP wanted me to but agreed as I now have to take other drugs for another condition. My personal aim is to be as drug free as possible and I want to live a bit longer and healthier! Making lifestyle changes diet and exercise can also help but in the final analysis I'll take a pill if I am convinced I will be better off with it than without it.

Beancounter profile image
BeancounterVolunteer

Hi John Thompson

Standard waiver that I am not medically qualified in any way, but that list of drugs you are taking would lead me to think two things.

1) Hypertension, or high blood pressure and I am assuming here the Lisinopril and the hydrocortothiazide is mainly for this, and

2) Some form of high calcium count or calcium challenges within the heart as they usually only prescribe aspirin alongside warfarin for that reason.

Tired? I should think so and probably weak as well, but it's not merely the drugs which are causing this but the underlying conditions of cardiomyopathy, hypertension and the AF, all of which make you tired and to have all 3 together will really knock you out.

I cannot comment on the Testosterone affect I simply don't know, but I can tell you I share similarly lower than average levels, and I take Diltiazem, Aspirin, warfarin and a statin.

My personal view, and it is a personal one, is that I don't understand the rush to get off drugs and try and lead a drug free life, I spent 55 years taking nothing more than the occasional headache pill, but now that I have effectively a lifelong condition, then I am more than happy to take any help I can get to make my living better and to extend that living.

We have heart conditions, for most of us we are always now going to have heart conditions, as again for most of us it's never going to be perfect again. Of course lifestyle choices are very important and will certainly assist and make a huge difference to our lives, but to expect perhaps to be drug free with a long term condition? is that a realistic hope and anticipation?. My personal view is no.

I am not sure how long you have been taking the drugs etc, my experience is that our body gets used to them, and that we do start to find it easier, I think also that underlying this is you not understanding why the cocktail of drugs, and that perhaps going back to the cardio and asking for a full explanation of why this combinations would really help, if nothing more than putting your mind at rest.

Be well and good luck

Ian

Just one comment on low testosterone, personal view only, I think it does contribute to AF. I have also lost some body hair, mainly under arms. I find in the mornings I have no problem with AF and am up for anything, as the day progresses that seeps away and pm/evenings/night has been AF problem time.

I did some brief research into boosting testosterone and came to a rapid conclusion there were more risks attached with that than my AF.

Keeping pushing at the doctors, I have found more visits to them than recommended though tiring and expensive has paid off in establishing the best treatment plan for my circumstances.

Good Luck, hope things improve.

BobD profile image
BobDVolunteer in reply to

Since I am on testosterone blocking implants to combat prostate cancer the idea of boosting testosterone is lunacy. Also the "normal " level is such a wide band as to be almost irrelevant. As for libido mine went in the incinerator along with my prostate three years ago and life has been so much more simple since then.

Bob

in reply to BobD

Glass half full is all you need……non-alcoholic if you have AF of course!

Rellim296 profile image
Rellim296

Have you talked through your list of drugs with a pharmacist?

kernow43 profile image
kernow43

I have posed the question on here before, how do you know which drug is causing what side effects when taking a cocktail of them together.

Of course there were several well thought out answers and arguments from the people far better experienced with AF than me. i have posed the same question to more than one GP and the Cardiologist but of course several opinions but no real answer if such a thing really exists. It's all trial and error until you find yourself a really switched on medic in the AF/heart world. I' m still searching for answers and taking advantage of my regular GP being on his hols, I went to see his locum last Friday who ordered a complete set of blood tests. I pointed out that if you read the complete list of possible side effects with regard to Simvastatin for instance, which I have been taking for over four years, I probably score about seventy per cent of them. I know of course Koll and others have thoughts on this drug, but similar effects are noted on Bisoprolol, which I take as well, and then there is Losarten and Warfarin to top it off. When I came out of hospital a couple of years ago having been at last diagnosed with AF/SVT, I had a carrier bag full of meds including Clopidogrel,Ramipril,Furosemide and Dronedarone, until scaled down to the four I take now, and I still feel like c**p most days.

I am also losing faith with GP's I meet, as with others on here, with regards getting answers and the correct referals for my treatment, however at over seventy I suppose somewhere along the line, someone is getting something right........

Anyway feel a bit better having had that little rant, hope you get sorted and feel better soon.

Ray

KayRee8 profile image
KayRee8

I can no longer sleep on my left since AF. Always left side sleeper before. Sometimes the best 10 minutes of my day are at night when I crawl into bed, I can lay on my left for 5-10 minutes before I feel like my chest is filling up and ectopicd start.

I can only sleep now with my head elevated.

gerryatriq profile image
gerryatriq

hi

My thoughts for what they are worth. I have not been diagnosed with Hypertrophic Cardiomyopathy, and only have AF (12 years chronic), and have had 2 heart stents fitted back in 2005/6. Like you I am taking

aspirin 75mg, bisoprolol 2.5, warfarin, ramipril, and Lipitor 10mg (i actually take 4 a week).

Aged now 65, I have seen my strength and libido reduced to nothing. In addition, like a lot of older males, I have gradually put on weight around the waist, not helped by lack of exercise tolerance etc. Loosing hair, head and arms and legs, and a few other noticeable symptoms I took it on myself to google the whole thing.

Now of course I realise that a lot of factors could be responsible for these symptoms, but the overriding thig that kept coming up (this is without mentioning my heart condition) was Low testosterone. So I wet for a private blood test, low and behold it was right at bottom end. I then proceeded to have all other recommended blood work, around low testosterone (easily googled), all came back OK with exception of estrogen, which in my case was way to high. I have shown the results of these tests that I have had done over a 2 years period (4 testosterone tests) and it is always rock bottom. So I mentioned it to my GP, he surprisingly had one done as well, which also came back right at the bottom but not outside the range, and so nothing will be done (IMO because I am not a 20 year old male). It is well documented about the possible relationship of heart problems and low testosterone, but no large scale studies have come to any real conclusion. The issue of Prostate is a concern, but having also had a PSA test done over 3 years, that is also very very low, at less than 1, and always has been. I dont know if testosterone supplement could help in these symptoms, but I mentioned it to my Cardio and she said she could not see a problem with giving it a go for a few months. But of course I cannot get it on the NHS as not done by GP. I have managed to buy some over the counter in a European chemist with a prescription from a local GP (english) at €3 for a single 3 month shot, but think I will go for patches were at least you can stop if unwanted side effects start, whereas the single 3 moth shot is a one way trip.

As for Amiodarone, I have when the AF was first diagnosed, and it stopped it dead in its tracks after 2 weeks and remained that way for about 2 years, until a breakout culminated in me visiting A and E, and the visiting morning registrar, just stopped it and put me onto Sotalol, but after 5 years of that and AF, I asked to try Bisoprolol, and never noticed any difference, and still remain in AF, permanently. 4 weeks later I lost over 10kgs until they realised that my thryoid had gone into overdrive, but that was yet another story.

It really does make me wonder some time if we should not be a little more adventurous sometimes, of course taking precautions as and when we are. UK GPs are pretty well stuck in what they can say or do, after we are all here for a short time and maybe sometime worth taking a risk here and there.

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