Congestive Heart Failure Community
Is this CHF or should I trust my doctors?
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Is this CHF or should I trust my doctors?

Hi to you all,

As I’m writing this I’m having another bad start to the day and really need some help with my situation as not one doctor or specialist I’ve seen so far has been able to help me in any way . . . apart from telling me my heart is not the cause of my problems.

I’m a 61 year old male, BMI of 24.6 (just within upper recommended level}, always been active and have no serious history of heart problems in my family.  For the past two years or so I’ve been finding myself increasingly short of breath after having exerted myself physically.  It started with my feeling breathless, nauseous and physically exhausted after I’d had a really hard day doing physical activity (such as gardening or major work on a house renovation).   Increasingly over the past two years I've found that the level of activity it takes to make me feel really unwell has decreased to the point that now, if I just spend an hour doing gentle physical work, or even taking a walk, I’m totally exhausted.  Breathlessness, feeling so tired I think I'm about to collapse, of heaviness all over my chest area, stiffness in my shoulders and neck are now normal for me after exerting myself only mildly.   Although I can’t understand why (now much less often than before), I sometimes feel fine when I’m actually doing the work or during a walk, and sometimes for the rest of the day, but feel total exhaustion the day after?  It often takes me two or three days before I feel well again and my energy levels are back to normal.   "Normal" energy levels now though are very low indeed.

I’ve seen my own doctor many times and each time he’s always told me my heart is in good condition.  Not totally convinced, I asked him to refer me to a cardiologist and a lung specialist.  I was tested and told my lungs are fine and show no reason for my shortness of breath.  I had an echocardiogram and the cardiologist found that I have both “very insignificant” aortic and mitral regurgitation.  I had a stress test done (cycling) and a 24 hour holter test.  Both of these, he said, showed nothing which would cause my problems.   This was about 6 months ago and he said I don’t need to have my heart checked again for at least three years.  My own doctor said that if he were to pick 100 men off the street, 50 of them would have the same sort of mitral and aortic valve issues and that it is definitely not a problem.    The lung specialist said the same.

So, if I listen to the experts, I shouldn’t be writing on this forum at all.   But, when I read about the symptoms that many people with heart problems, particularly CHF, have, I have to wonder if my experts have got it right.

I check my pulse and oxygen rates regularly with a monitor and they seem to be OK.   My resting heart rate hovers around 56 - 60.   Can CHF still exist even when pulse rates seem normal?

I’ve just started using a blood pressure monitor and, so far, the readings are within normal blood pressure ranges.   However, there are many times these days when the whole of my face turns bright red and I feel really hot.   For some strange reason this always seems to happen when I’m just sitting down in a restaurant or in the car for example.   I don’t have to get up quickly or sit down quickly for this to happen.      

The shortness of breath is currently my big problem.   I don’t know if it’s relevant but, during the night, if I’ve strayed and slept on my left-hand side, for even a few minutes, I start to feel unwell.  It’s as if in some way I’m restricting my lung capacity (difficult to explain).    I immediately find it difficult to breathe and start to feel unwell.   By then, no matter what I do, I can’t get rid of that feeling and it’s with me for the next few hours, along with the exhaustion (total exhaustion), and stiff neck and shoulders.   If I sleep on my back or on my right-hand side this doesn’t happen.    I know sleeping in a bad position can cause neck and shoulder pain but I can’t see it causing shortness of breath and total exhaustion for at least a day after.  I’ve read that patients with heart failure often can’t sleep on their left-hand side because it makes them feel unwell.  And no matter how well I sleep on occasions, I never wake up refreshed.    Could all this be caused by those two leaky valves, even though I’m being told emphatically that isn’t?

Another occasional (and as I write) problem is jaw pain.   My bottom jaw really aches on both sides and chewing and talking makes it worse.   I think that’s possibly a TMJ symptom, but I’ve read that jaw pain can signal a serious heart problem and that is shouldn’t be taken lightly.   But I know if I see my doctor he’ll dismiss this too, saying it’s not heart related.   Would he be right?

I also have what feels like bloating in the area below my ribcage and more and more, the cartilage between my ribs are painful for hours at a time.    All this makes breathing increasingly uncomfortable.  

So, I’m not convinced by my doctors that my heart is OK.   I hope they’re right.  But what should I do now?   I can’t keep on like this because I don’t know what I should or shouldn’t do to make my days normal again.   I don’t know how to manage this on a daily basis and my doctors, after two years, have not helped me.   Can anyone on the forum relate to all of this?  

Many thanks.
Frank
11 Comments Post a Comment
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Avatar_m_tn
I agree that many of your symptoms looks like HF, however the test that you had are the right ones to discard them.

If I were you, I will look in other areas, have you tried an internal medicine dr.?

Jesus.
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Avatar_m_tn
Thanks Jesus,

What do you mean exactly when you say an internal medicine doctor?

Frank
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Avatar_m_tn
As far as I know, it is doctor that will get the best overall picture of a patient, he will check all your body areas in coordination with other specialist.

It is also called Internist.

See this: http://www.acponline.org/patients_families/about_internal_medicine/

If you have seen the TV series "Dr. House" he is and internist.

Jesus
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Avatar_m_tn
Thanks again Jesus.

Yes, I know what you mean.   I've been hospitalised three or four times because of feeling unwell, exhausted, short of breath, dizzy etc. and internists have taken a look at me.   The longest I was in hospital was four days.   But they've done their tests and always said my vital signs look OK and have sent me home again.

Can you give me your thoughts on one question in particular.   Can you have heart failure yet have consistent,normal, even healthy pulse rates?    Even when I feel really unwell and I'm thinking "this really isn't good", my pulse is at 60 and my oxygen level at about 97.   Does this happen to people who have CHF?

Thank
Frank
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Avatar_m_tn
Of course your vital signs are OK, otherwise you will be probably death. The problem is that this is the focus of the drs. they keep us alive, but they are less interested  about how to measure and improve our quality of life.

Yes, I have HF due to a massive heart attack almost 6 years ago and today I peeked up my last blood tests.. all perfect. My normal BP is 110/70 and my pulse 60-65. My oxygen saturation is about 96%

You need to realize that in a blood test only appears what the dr. asks for. The parameter that indicates HF it is rarely asked, is the BNP or pro-BNP.

However HF appears always in a cardiac echography that you already have.

Jesus.
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Avatar_m_tn
Frank,

I've been following your discussion and agree with everything Jesus has said. I've had CHF since 2000, my symptoms were much as you describe. I would suggest that, if possible you find a cardiologist who specializes in heart failure (they do exist) if you haven't had a BNP test you should request one, a neuclear stress test would also seem to be in order. The two test should determine if you do in fact have HF. Also you might want to discuss wearing a heart monitor for a while with your cardiologist.

I will add that if you are not getting the attention to your problem from your doctors that you feel you need, you may need to be more aggressive in your relationship with them. If they can't find the cause of your sympyoms, find another doctor.

Good luck,
Rich
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Avatar_m_tn
Hi Rich and thanks for your comments,

I saw my doctor yesterday evening because of the radiating pains around my jaws and in my teeth that have been niggling me over the past few days (along with the fatigue, feeling unwell and shortness of breath).   He took a lot of time examining me and listened to my heart rhythm and, specifically, for any mitral valve issues.   He said there are definitely no problems there.  He is totally convinced, not even slightly concerned.

I know this isn't the same as seeing a CHF specialist and if the problem continues I'll search one out and ask for the tests that Jesus and yourself have recommended.  

From your comment are you saying that, as my symptoms seem similar to yours earlier on, that CHF is probable in my case or not?    As Jesus says, the cardiac echography would have shown something to worry about if there was a problem.  

Thanks again,
Frank
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Avatar_m_tn
Frank,

Yes, the echo should have shown evidence of CHF, It did in my case resulting in a more precise nucular stress test to determine the extent of damage. As to my symptoms, I had shortness of breath, fatigue, and a general feeling of unease. I never had the jaw/ tooth/pain you describe, but these can be HA symptoms.

Though your symptoms sound very much like HF, it appears that your doctors have pretty much ruled that out. I suggest that you request your doctor to continue to persue a diagnosis, or as Jesus suggested, see an good internist for help in finding the reasons for your symptoms.

Rich
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Avatar_n_tn
Hi Frank,

I'm 53 and was diagnosed with heart failure at the age of 43 after about 4 years of symptoms. I have also had a host of other symptoms which only recently has been diagnosed as Vitamin D deficiency. Have a look at the vit d chat on this web page. It might help..
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Avatar_f_tn
Have you seen a pulmonary specialist?  Even though heart and lungs seem to go together in medical terms, the respective doctors seem only focused on their particular area.  I wouldn't return to the original doctors who've been telling you not to worry.  Move on to fresh ground.

Also, you don't say if you're on some kind of medication, i.e., for blood pressure, cholesterol perhaps.  I went in for a stent and ended up with a heart attack when the probe hit a hard patch and cause it to collapse.  I was put on Metoprolol and aspirin plus 2 blood pressure meds.  I, too, had difficulty sleeping lying down, walking without having to stop and catch my breath, and urine leakage!  Every time I complained, the cardiologist increased the dosage of the Metoprolol.  Now, in addition to CHF, I have COPD and diabetes.  I finally convinced him to stop the Metoprolol but it was too late to reverse the other damage.

If you haven't already done so, go to some safe Web sites and see if you can find some ideas to follow up on with a medical specialist.

Be aggressive -- and keep us informed of your progress.

Rose
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Avatar_m_tn
Look up this UK paper.    I am having the same problem getting my primary to look at my condition seriously.    I think it is the heart muscle getting a low uptake of oxygen.    Mitochondria problems.    Have you received any further information?

CFS - The Central Cause: Mitochondrial Failure

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
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