Re: Need to know about retention of water?Thanks ladies but I am scared
From: anonymous (anonymous@obgyn.net)
Fri, 28 Jun 2002 00:28:34 -0500 (CDT)
At Thu, 27 Jun 2002, Barb wrote:
>
Barb,
I was diagnosed in 1995 with PCOS .I am now a diabetic with heart
failure.
At the time,I was having difficulty breathing at night and had a sleep
study to determine sleep apnea.I was slightly overweight at the time.
I was also having terrible dizziness and fainting spells as well as
pounding in my heart with some PVC's recorded at the emergency room and
I was then sent home with some ativan and told that I was having panic
attacks.This went on for two years-I was back and fourth to the
emergency room being told time after time that I was having anxiety
attacks.
I was sent to two cardiologists that told me that I had to lose
weight,but there was absolutely nothing wrong with my heart.
The third one diagnosed my heart failure almost immediately.
I can tell you that my heart failure was a result of my diabetes that
was caused from my insulin resistance that I was never once given any
medication for.I didn't even have the GTT or IGTT tests done,yet,the
diagnoses of PCOS was made because of my elevated testosterone and
weight problems.
I can give you advice- and that is that you will now be given treatment
to stop the progression and can still live a relatively normal
life.CHF-caught earliest gives the best prognosis.
Do you have pulmonary hypertension?/This was thought to be the
contributing factor in CHF.
I can hear the pain in your letter.
Hold your chin up and think positive.
I rarely post here,as my problems are now related to diabetes and heart
failure.
I still check from time to time to see how well this syndrome is being
recognized and treated before it's too late.To be totally honest-I check
to see if any other individual has had the same diagnosis as myself.
If you can provide me with your email-I would be pleased to be an
on-line buddy for you.
I'm 35 years young:0)
This can happen to young women.
Donna
email:donnagoldson11@aol.com
>I know that this is going to make me sound so paranoid,but honestly;my
>instincts and the way the doctor is talking about a failing heart-leads
>me to believe that it is happening to me.
>I had problems with my heart(ejection fraction was 40),and that wasn't
>good.The doctors didn't know what it was,but that was when I was
>misdiagnosed at the beginning and suffered with other ailments...the
>diabetes insipidus...thyroid problems and a myriad of problems,.this is
>when I was labelled as an anorexic..I won't go in to detail,as most of
>you know my whole story.Anyways,I was told to eat or else my heart was
>on the verge of failing.,(they later discovered I was eating,but had
>some malabsorbtion problems).The nightmare was just beginning for
>me,although I didn't realize it.
>
>My last tests showed the ejection fraction at 70;which is very
>good)..now;apparantly,my cardiologist said that showed no evidence of
>any primary heart disease.That echo was done in September of 2001.
>
>My new specialist(the one coordinating all my new tests etc),had made it
>quite clear to me that I am showing symtoms of heart failure despite my
>ejection fraction and that- YES..this happens with untreated
>hypertension,IR,Diabetes,obesity...etc.It happens when an overactive
>thyroid gland goes undiagnosed...it happens from adrenal exhaustion.He
>said that is what finally kills us.
>He said that there is NO single test to rule out heart failure,but my
>body may be compensating in many ways...retaining fluids,.restricting
>vessels...systolic dysfunction on my BP readings.
>I get winded doing normal,every day activites...my heart pounds severely
>after eating and all throughout the day.
>He told me that since I have been doing the walks ,which can be very
>good...this may be why I am feeling worse and more symptoms are
>showing.I seem to have phases.I over do and then I suffer all night.I
>think I am pushing too hard with the walks and he said to take it really
>slow and when I feel just the slightest bit of discomfort..to stop.I
>know how I used to feel when I walked...the way I feel now with a slow
>stroll is like I am speed running with my heart not going quickly,yet
>pounding so forcefully.I know that after all the months of my yoga
>sessions that are all movement and some dance daily ,that by now ..my
>resting heart beat should have slowed down.It hasn't and I want to give
>up.Something keeps telling me to plug along.
>I am not overweight..and I am 41..far too young ,as he said; to be taken
>seriously by many cardiologists,when in fact,-he was not happy with the
>results from my previous holtor monitors and cardio-diary which showed
>tachycardia day and night.My damned heart will actually slow down to
>less than 40 BPM when I perform a light lift.
>I think I may have mentioned that I had a function test done where you
>perform range of motion tests...light lift..walk...stretch..stand..and
>more.All the time,they are monitoring your heartbeat and the results
>show what a normal increase should be and what is abnormal.Mine was
>almost abnormal in all.Rather than it speed up when it should..it went
>down where I near fainted.When I sat to do some grip tests..my heart
>beat sped up like a rocket.
>
>I don't know anymore..but I may just be one of the very unlucky people
>to have inherited the gene.Syndrome X runs high on my maternal side of
>the family.
>With untreated Ir for so many years and PCOS..I may be the one that it
>hit in a different way.
>
>I am very scared as he told me that some people with heart failure can
>have an ejection fraction of 20 and have no symptoms,while someone like
>me can have a good one and be symptomatic.
>
>I've always had this floating in my mind as you can tell from all my
>former posts about heart palps and discoloration in my legs and then the
>new diagnosis of some chronic orthostatic intolerance.
>
>All I want to say is that I suffered all through my adolescent life with
>plentiful signs of IR-pcos//the hairloss..the acne....just not the
>weight issues,as I worked my ass off to keep healthy and thin..eating a
>so called healthy diet of high carbohydrates since I was very athletic.I
>never binge ate,but I thought I was doing the right thing by eating
>pasta's,..you know//all the things that we find out now aren't good for
>us.
>My cholesteral is 6...I have more bad than good...but don't have the
>numbers available.I can't keep track anymore.
>
>I know my body and have not responded to treatment of any sort for
>numerous problems and it may just be that I need meds for my heart.He
>said in the past...they may have had me on the wrong ones...as I was on
>a beta blocker and then taken off it ,as my heart slowed down too much.
>
>How in the heck am I ever going to get helped?He is a wonderful doctor
>and I trust him..but in all honesty..I am so hesitant to trust any
>doctor with the luck that I've had in the past.
>
>I feel terribly depressed....I think of the years I felt so depressed
>from hairloss and acne and now I wish I had that all back rather than a
>heart that could be in failure.
>
>I don't know if much of this makes sense to any of you,as I am so
>brainfogged and worried.
>I cannot imagine living the life that my relatives did with their
>history with heart disease.
>My grandfather died of CHF at a very young age..as did all his siblings
>and my moms siblings with strokes,heart attacks.It is just me,and my mom
>from that side left.I see now by their pictures..even the males..all
>apple shaped with male pattern baldness...diabetes etc.
>Why didn't anyone ever take note of my history when I always had to
>write it down?
>I am terribly afraid of losing more of my freedom.I can't imagine how it
>would be if these feelings get any worse.
>He had spoken of ace inhibitors...some other meds that I never heard
>of,.but first off to see another cardiologist.My god..he is an
>endocrinologist with great knowledge about the heart.
>
>I always had a feeling that the feelings of my heart were unrelated to
>what I ate...yet was so afraid to ever tell anyone what was on my mind.
>I trust that you all understand my feelings of being very afraid and I
>pray that this all soon shall pass.
>
>My heart goes out to every one of you suffering with this dreaded
>disease.It may be more disabling than many think it is.More to it than
>just hairloss,etc.
>It's time we take a stand and get the treatment that we require and
>never,ever give up hope and take one,two,three or even twenty doctor's
>opinions-diagnosis if you still feel poorly.You own intuition is usually
>right on.You may not know what you have,but you sure know how to explain
>the symptoms and that should be addressed.
>
>Again-my apologies for this story like post..but I needed to make all
>aware of the dire consequences that can happen.
>
>Thanks for the ears,and if anyone can relate or offer any advice,please
>contact me by email.
>
>>Barb -
>>
>>I know you and I have discussed this and I've mentioned it here also...Yes, I
>>do suffer from water retention in my legs/calves, feet and toes (more the
>>right one). I am currently on Lasix, which unfortunately, doesn't seem to be
>>doing much ...I go to the bathroom several times after taking it for about 2
>>hours or so, but the swelling is still the same, actually, a lot more
>>recently. In addition to the pitting edema/swelling, I have "lumps" under
>>the skin...lumps that I can feel as I move my hands up and down my
>>calves....more in the right leg than the left, although I have felt one or
>>two in the left leg as well. I keep my feet up as much as possible and I'm
>>ALWAYS in air conditioning...my dream is an Alaskan cruise....:))))
>>
>>I have seen 2 vascular doctors, who basically blew it off and told me that it
>>was nothing. I am very frustrated, since the swelling has gotten worse, and
>>I have been experiencing more pain in my leg now too. I also have sciatca.
>>I have no doubt that the weather relates to how I feel, however, I don't
>>think that it's the ONLY reason I feel like way. I don't know what to do
>>next. Very frustrating.
>>
>>Anonymous
>>
>>In a message dated 6/26/2002 3:20:08 PM Eastern Daylight Time,
>>anonymous@medispecialty.com writes:
>>
>>> Subj:Need to know about retention of water
>>> Date:6/26/2002 3:20:08 PM Eastern Daylight Time
>>> From:<A HREF="mailto:anonymous@medispecialty.com">anonymous@medispecialty.com</A>
>>> Reply-to:<A HREF="mailto:pcos@obgyn.net">pcos@obgyn.net</A>
>>> To:<A HREF="mailto:pcos@mail.medispecialty.com">pcos@mail.medispecialty.com</A>
>>> Sent from the Internet
>>>
>>> I need to know this for my doctor as I really haven't had a problem with
>>> water retention the last while until today,he noticed pitting edema
>>> again in my ankles.I told him my period was due.I always know when it is
>>> about to begin.
>>> Regardless,he seems concerned more with my heart than my hormonal
>>> issues.
>>> It is very warm here in Winnipeg and humid.I find when my body is
>>> warm..I am retaining more fluids.I am still staying in air conditioned
>>> environments.
>>>
>>> I consume the exact same amount of fluids per day and I have noticed
>>> variances in the amount of urine passed.For two weeks;I was urinating so
>>> much and noticed a decrease in weight.My diet is very much the
>>> same.Protein,veggies etc.
>>>
>>> The last two days,I am hardly passing any in the amount of urine,but in
>>> the morning (when gravity changes),I am urinating excessively.I am not
>>> getting up during the middle of the night to urinate(something he asked
>>> me).
>>>
>>> I am familiar with the hormone released called vasopressen,the diuretic
>>> hormone.
>>>
>>> Can anyone tell me if they experience the pitting edema as well with a
>>> variance when it is warm or with your period.
>>> I am very afraid that this is my heart.
>>> The doctor wants me monitoring the amount of input and output of urine.I
>>> have done this in the past,but I am afraid this time,;it will show
>>> retention of fluids as I am just about to get my period.
>>> Any advise appreciated.
>>>
>>> --
>>> Sincerely,
>>> Barb C.
>>>
>--
>Sincerely,
>Barb C.
>
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