Oedema and low blood volume at the same time, anyone else?

[Peter Charlton]

Feeling really quite spaced out, I took my blood pressure when standing after having been sitting for some time relaxing.

Blood pressure was about 24 points less than my normal, (114 rather than 137), pulse was 111, my resting pulse is usually quite low, 67 as I write this.

So I looked up possible causes and find "low blood volume, which could certainly explain why I feel drunk and spaced out the longer I am out of bed. 

Trouble is, I also have Oedema, due to mild heart failure, my urination tends to occur at night with the help of gravity when I am lying down.

I read that blood volume can be increased by increasing salt and fluid intake, but not to increase salt if you have high blood pressure and heart failure.

Is there anyone on the forum with both oedema and low blood volume?  Are you told to increase your fluid intake? 

This isnt a hot weather thing, I am just as bad when its cold.

[StayAtHomeMom]

My family will never believe I am saying this but it is usually not good to look things up. I would go see a doctor.

Maybe see if compression stockings could be helpful in your situation. They are supposed the keep your blood from pooling in your legs. Be safe and good luck. 

[Peter Charlton]

6 hours ago, StayAtHomeMom said:

My family will never believe I am saying this but it is usually not good to look things up. I would go see a doctor.

Maybe see if compression stockings could be helpful in your situation. They are supposed the keep your blood from pooling in your legs. Be safe and good luck. 

I have tried Doctors here in the UK for over a year about this, it is too complicated for them so they could not help so I have to do their work for them.

I did arrive at the conclusion beta blockers had permanently disrupted my Autonomic Nervous System and told them, of course for the longest time they wouldn't listen, but when they did and referred me to the Autonomic Neurology unit at the UCL, I was told I had Autonomic Instability and a whole host of tests was to be had. Unfortunately, the tests have a waiting list of first of all five months, which has now increased to eight months now the five months are up.

I do not foresee them being any help and the GPs will not instigate any further investigation whilst I am being investigated for Dysautonomia, so my own research and application is truly my only hope.

[yogini]

 Most often low blood pressure is because our blood vessels don't constrict properly.  I think you'd have to have a test to determine if you have low blood volume.  Some people with dysautonomia have low blood volume, but most don't.

[StayAtHomeMom]

6 hours ago, Peter Charlton said:

I have tried Doctors here in the UK for over a year about this, it is too complicated for them so they could not help so I have to do their work for them.

I did arrive at the conclusion beta blockers had permanently disrupted my Autonomic Nervous System and told them, of course for the longest time they wouldn't listen, but when they did and referred me to the Autonomic Neurology unit at the UCL, I was told I had Autonomic Instability and a whole host of tests was to be had. Unfortunately, the tests have a waiting list of first of all five months, which has now increased to eight months now the five months are up.

I do not foresee them being any help and the GPs will not instigate any further investigation whilst I am being investigated for Dysautonomia, so my own research and application is truly my only hope.

That sounds similar to me. I spent a year with multiple doctors telling me it was anxiety and my smoking. Til I did a poor man's tilt table test every day for a month and brought them the data. The data along with a few good doctors I found my diagnosis. But I did my research myself. 

Has your blood sugar ever been checked? My mom and brother have type 2 diabetes and night time trips to the bathroom was one of their first signs. 

If you are worried about the low blood volume I would try an electrolyte replenishing drink. Here in the US I would recommend Gatorade, POWERade, vitamin water, or pedialite. Not sure what options you have it the UK. It never hurts to hydrate. 

I am not sure about how your oedema and mild heart failure would effect your body. I would try to stick to what the doctors say. Maybe try calling to get into a canceled appointment slot. 

[yogini]

22 minutes ago, StayAtHomeMom said:

That sounds similar to me. I spent a year with multiple doctors telling me it was anxiety and my smoking. Til I did a poor man's tilt table test every day for a month and brought them the data. The data along with a few good doctors I found my diagnosis. But I did my research myself. 

Has your blood sugar ever been checked? My mom and brother have type 2 diabetes and night time trips to the bathroom was one of their first signs. 

If you are worried about the low blood volume I would try an electrolyte replenishing drink. Here in the US I would recommend Gatorade, POWERade, vitamin water, or pedialite. Not sure what options you have it the UK. It never hurts to hydrate. 

I am not sure about how your oedema and mild heart failure would effect your body. I would try to stick to what the doctors say. Maybe try calling to get into a canceled appointment slot. 

But if you have edema - swelling from excess fluids - it's usually recommended to avoid salt/electrolyte drinks.

[bombsh3ll]

Hi Peter,

Low intravascular volume and oedema certainly can co-exist. An example is patients with liver cirrhosis (not sugesting this is you) & those whose blood vessels are leaky for various reasons, allowing proteins which would normally not pass through to escape, followed by water.

The compression stockings mentioned above can be helpful if you haven't already tried them. I get them on prescription from my GP (that is the only NHS treatment I've ever been given). 

Sleeping with the head of your bed elevated is also said to be helpful in reducing nocturia and increasing blood volume. I personally haven't found it helpful but I keep the bricks under my bed in hope! I've never had oedema though. 

How is your protein intake? Increasing albumin levels can in theory help retain fluid in the vasculature, again it is something I try with although my appetite is poor.

Unfortunately I think the only way forward is to keep calling the waiting list office at the autonomic unit. I hope to be joining that too very soon, currently working on getting out of area funding as I live in Scotland. Some places have cancellation lists for if someone cancels/dies/becomes too unwell to attend whilst waiting so do let them know if you'd be willing to take an appointment at short notice. 

Best wishes, I hope you get some relief soon.

B x

[blizzard2014]

Are you on Amlodipine? I was on that for a few weeks and my legs and feet swelled up so bad, I couldn't even get my shoes on. Sometimes it can be the medications that cause you to have the swelling. Also, mild heart failure can cause the swelling too if you are not on the proper medications. I also have an enlarged right heart, but so far it is still pumping good with no signs of heart failure yet. It is scary though when I lay in bed at night and think about it. I too am a former smoker for 15 years. I can no longer tolerate smoking since I had blood clots in my lungs. I get deathly ill after a few puffs on a cig these days or else I probably would still be stress smoking. Cigs do quite a number on the body though. It's best to avoid them now that you have all of these medical issues. I can tell you this though with regards to trying to research symptoms on the internet. You can be convinced that it is this one thing, when in reality it is something totally different. Also make sure your doc's do not get tunnel vision. Since you have mild heart failure on your chart. chances are, that's all they're going to see when you go to them with new symptoms. They're going to put it all down to your heart problems. When I go to the docs with all of my weird symptoms, they always try and put it down to blood clots in the legs and lungs, because that is the biggest thing on my medical chart. This can also prevent you from receiving a proper diagnosis.

For two years I was convinced I had chronic blood clots in my lungs causing my shortness of breath and feeling unwell. I had 2 CT scans of lungs and lung veins and one VQ scan that revealed completely normal lungs with all previous blood clots dissolved. I was exposed to a bunch of un-needed radiation for nothing. All because me and the docs only saw the blood clots. It had to be the blood clots. As it turns out it was high BP and HR upon standing that was making me feel so unwell years after the clots in my lungs cleared out. I was focused on the wrong thing and was proven wrong. You might have autonomic dysfunction, or you might just have problems from your enlarged heart. You will never know until you get all of the proper medical tests done. It takes time and also takes the right team of doctors who want to help you to find answers. Sometimes doctors want the easy patients. But we are Zebras and we are not easy to figure out. Thus sometimes we need a special doctor to help us. I hope you're feeling better. 

J

[Peter Charlton]

6 hours ago, StayAtHomeMom said:

 

Has your blood sugar ever been checked? My mom and brother have type 2 diabetes and night time trips to the bathroom was one of their first signs. 

I am not sure about how your oedema and mild heart failure would effect your body. I would try to stick to what the doctors say. Maybe try calling to get into a canceled appointment slot. 

Have frequent blood tests, even complete ones, only issue was a tiny bit low in Folic acid which my GP then says everybody has!

I told them at the Autonomic Unit back in February I am available within hours for any cancellation, has made no difference though.

[Peter Charlton]

2 hours ago, bombsh3ll said:

Sleeping with the head of your bed elevated is also said to be helpful in reducing nocturia and increasing blood volume. I personally haven't found it helpful but I keep the bricks under my bed in hope! I've never had oedema though. 

How is your protein intake?

Best wishes, I hope you get some relief soon.

B x

I do sleep with the head of my bed elevated, completely cured my need for Rennies heartburn tablets, its only this heat that is reducing my normal four trips to the tiolet each night!

I dont eat a lot these days as one of my symptoms is feeling quite ill after eating, but I would say the proportion of protein is the same as it ever was.

[Peter Charlton]

57 minutes ago, blizzard2014 said:

Are you on Amlodipine? I was on that for a few weeks and my legs and feet swelled up so bad, I couldn't even get my shoes on. Sometimes it can be the medications that cause you to have the swelling. Also, mild heart failure can cause the swelling too if you are not on the proper medications. I also have an enlarged right heart, but so far it is still pumping good with no signs of heart failure yet. It is scary though when I lay in bed at night and think about it. I too am a former smoker for 15 years. I can no longer tolerate smoking since I had blood clots in my lungs. I get deathly ill after a few puffs on a cig these days or else I probably would still be stress smoking. Cigs do quite a number on the body though. It's best to avoid them now that you have all of these medical issues. I can tell you this though with regards to trying to research symptoms on the internet. You can be convinced that it is this one thing, when in reality it is something totally different. Also make sure your doc's do not get tunnel vision. Since you have mild heart failure on your chart. chances are, that's all they're going to see when you go to them with new symptoms. They're going to put it all down to your heart problems. When I go to the docs with all of my weird symptoms, they always try and put it down to blood clots in the legs and lungs, because that is the biggest thing on my medical chart. This can also prevent you from receiving a proper diagnosis.

For two years I was convinced I had chronic blood clots in my lungs causing my shortness of breath and feeling unwell. I had 2 CT scans of lungs and lung veins and one VQ scan that revealed completely normal lungs with all previous blood clots dissolved. I was exposed to a bunch of un-needed radiation for nothing. All because me and the docs only saw the blood clots. It had to be the blood clots. As it turns out it was high BP and HR upon standing that was making me feel so unwell years after the clots in my lungs cleared out. I was focused on the wrong thing and was proven wrong. You might have autonomic dysfunction, or you might just have problems from your enlarged heart. You will never know until you get all of the proper medical tests done. It takes time and also takes the right team of doctors who want to help you to find answers. Sometimes doctors want the easy patients. But we are Zebras and we are not easy to figure out. Thus sometimes we need a special doctor to help us. I hope you're feeling better. 

J

I am not on any medication for anything, very wary anyway as all my current problems arrived when they had me on beta blockers for a month 18 months ago.

I too am a little concerned that my neurological symptoms are getting worst whilst other Autonomic symptoms seem to be getting better, that the health profession wont do any other checks on me for anything else. I went into A&E last Friday at St Thomas' as I was there already, in the hope I could get them to instigate something, but the doctor there said it sounds like Autonomic Issues, so I will just have to wait. Its quite Ironic that until I reasoned with them, they wouldn't entertain the idea that I had Autonomic Issues.

[Pistol]

@blizzard2014 - you nailed it by pointing out that once we are diagnosed with something they like to get hung up on that diagnosis! That is just so unfortunately common!

[StayAtHomeMom]

9 hours ago, yogini said:

But if you have edema - swelling from excess fluids - it's usually recommended to avoid salt/electrolyte drinks.

I did a little digging and I see where that would cause an issue. Kind of surprising that some people would need to restrict their fluids. Most doctors and health advocates always seem to push hydration. I guess we all learn something new everyday. 

[StayAtHomeMom]

3 hours ago, Peter Charlton said:

I am not on any medication for anything, very wary anyway as all my current problems arrived when they had me on beta blockers for a month 18 months ago.

I too am a little concerned that my neurological symptoms are getting worst whilst other Autonomic symptoms seem to be getting better, that the health profession wont do any other checks on me for anything else. I went into A&E last Friday at St Thomas' as I was there already, in the hope I could get them to instigate something, but the doctor there said it sounds like Autonomic Issues, so I will just have to wait. Its quite Ironic that until I reasoned with them, they wouldn't entertain the idea that I had Autonomic Issues.

I seen in a basic lookup that there are 4 different types of drugs that can be used for your conditions. Have they tried you on anything else besides the beta blockers?

[Peter Charlton]

21 hours ago, StayAtHomeMom said:

I seen in a basic lookup that there are 4 different types of drugs that can be used for your conditions. Have they tried you on anything else besides the beta blockers?

Because I am waiting, (since February) for Autonomic testing at the London University Hospital, everyone uses that as a reason for not giving me any further investigation or medicines in the meantime, so no, I am getting any treatment for anything. The NHS now do the very minimum they can get away with.

[StayAtHomeMom]

3 hours ago, Peter Charlton said:

Because I am waiting, (since February) for Autonomic testing at the London University Hospital, everyone uses that as a reason for not giving me any further investigation or medicines in the meantime, so no, I am getting any treatment for anything. The NHS now do the very minimum they can get away with.

I wonder why that is. Seems counter productive. I would definitely keep calling to try to get in sooner. 

[Weary]

Is there something you would like to take now if theyd precribe it?

even if your autonomic tests when u finally get them give u the official diagnosis, i bet they still wont know if you should be restricting fluid 

 

i find myself not knowing either whether i should consume more fluids or less fluids, more sodium or not (cant go any lower). My low sg urine suggests i should lower fluid intqje but my high bloid sodium seems to suggest opposite. Last 3 weeks very low sodium intqke but that made sodium rise. I have high bo which climbs to hypertebsive crisis. So beats me eitherwhat to do. 

Incidentally im with tou that we have to figure this all out on our own  

 

hope the heart failure improves soon  

 

[Guest ANCY]

Recently have had trouble with edema and fluid depletion simultaneously. Likely not directly from dysautonomia, I've been dealing with severe anemia with hemglobin dropping 5.1 and 5.8. Also had a pulmonary embolism in May that made my heart enlarged with symptoms of heart failure. So while there are other factors playing into it, I have had both volume depletion and edema occur together and treated at the hospital for both. 

[Andy T]

Hi,

I also have simultaneous fluid depletion and edema leading to low blood volume & low blood pressure.

the edema forms very rapidly when I stand via capillary leakage. I loose so much volume it drops my kidney function.

the edema resolves quickly on lying down. My docs say the underlying problem is autonomic neuropathy preventing blood vessel constriction allowing blood to pool.

any of this similar to yourself?

 

[Peter Charlton]

6 hours ago, Andy T said:

Hi,

I also have simultaneous fluid depletion and edema leading to low blood volume & low blood pressure.

the edema forms very rapidly when I stand via capillary leakage. I loose so much volume it drops my kidney function.

the edema resolves quickly on lying down. My docs say the underlying problem is autonomic neuropathy preventing blood vessel constriction allowing blood to pool.

any of this similar to yourself?

 

Hi Andy, I believe I have some form of Neuropathy as my feet and lower legs are constantly buzzing, the soles of my feet feel as if I have just been beaten on them, this happens all the time now, even if I have spent a day in bed. My GP stabbed me in the leg with something sharp and asked if I felt it, I said yes, but she wrote down no, I guess I should have reacted to something that to me felt quite numb.

I might have to change the view I initially expressed in this post. Firstly I said the edema is due to heart failure, whilst it may be, my heart failure if at all is quite mild, an enlarged heart, some scar tissue, Mild Mid LAD disease, are some of the things picked up by an MRI scan, but this week I finally had some Autonomic Testing at the UCLH, whilst I seemed to pass everything OK, had no bad feeling from the tilt table test, what I did notice was standing up my blood pressure was 157, then as soon as I lay down it went down to 114, I have to wait a month to hear about the results, but if it turns out I have Hyperadrenergic POTS, this could explain the edema rather than heart failure. I also read it can cause hypovolemia as well. Time will tell. 

[Andy T]

Hi Peter,

my edema is definitely caused by vascular leakage during standing. I too have mild heart damage, but this has happened as a result of overworking the heart. On initial diagnosis heart was fine  & all usual causes of edema were excluded.

my diagnosis was confirmed by tilt table testing, where the test was terminated at 19 mins due to rapid drop in BP & HR. My symptoms came on within 2 minutes.

A neurologist conducted many bedside tests afterwards but my leg sensaowere normal except sensation of temperature.