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tex
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Post by tex »

Tessa,

To be honest, I don't remember exactly what initially convinced me that you have hypovolemia, but it was something in your description of your symptoms, and test results, back when we first discussed POTS.

When a doctor recommends that you drink plenty of fluids before having blood drawn, or when she/he recommends a saline IV infusion, that is because she/he thinks that you have hypovolemia, otherwise, you would not need the additional fluids. If drinking more water, or having a saline solution infused by IV, helps to significantly increase your blood pressure, then that is pretty strong evidence that you have hypovolemia, because if you did not have it, the extra fluids would not provide much help.

I've forgotten, I may have already asked this earlier, when we first discussed POTS. Have you been tested for adrenal insufficiency? IOW, has your doctor checked to make sure that your adrenals are producing plenty of cortisol. If your body is low on cortisol, one of the effects is low blood pressure.

Anemia can cause hypovolemia. Are you sure you're not anemic?

Also, what about the link between Chronic Fatigue Syndrome, (CFS), and POTS. Somewhere, I saw a report where approximately two-thirds of patients with postural tachycardia syndrome suffered from chronic fatigue. I remember you mentioning that chronic fatigue is a serious problem for you. The reason I bring this up is because of the fact that you mentioned that you are taking a beta blocker.

The beta blocker is prescribed to limit the maximum heart rate. However, in your case, I believe that the reason why the heart rate increases in the first place, is because it is trying to compensate for the insufficient circulation, due to the hypovolemia, not because of a neural disorder. As the blood pressure goes down, it is necessary for the heart to pump faster, in order to maintain sufficient blood in circulation.

On the other hand, if the tachycardia is due to Neurally-Mediated Hypotension, (NMH), then a beta blocker would probably be a good idea. The big question is whether it's a good idea, in the case of hypovolemia. The following quote is from the POTS information site that I believe you often refer to:
Beta blockers are used by many doctors to treat POTS and neurally mediated hypotension (NMH). I have heard of more bad drug reactions to beta blockers than any other drugs used for the treatment of POTS and NMH, especially for those patients who have NMH secondary to Chronic Fatigue Syndrome. In these patients beta blockers can actually cause POTS. Some patients have found beta blockers to be helpful, however, especially those patients who develop POTS because of an overly sensitive beta adrenergic system. For these sensitive patients only very low doses of beta blockers are usually required.
I don't believe that NMH is your primary problem - I think it is hypovolemia. Even if I am wrong, though, and it should turn out to be NMH, the odds are very high that you have CFS, and that suggests that taking a beta blocker may not be a good idea, in either case. Still, without the beta blocker, the chest pain will probably be worse, during a tachycardia episode. The problem is that a higher heart rate does not necessarily move any more blood, if the blood supply is short to begin with. From that viewpoint, the beta blocker is probably a good idea. And, if it helps to keep your BP from falling as low as it would without any meds, then it is obviously beneficial.

Yes, hypovolemia can definitely cause hypotension. Here's a quote from Wikipedia:
Hypovolemia

Orthostatic hypotension may be caused by hypovolemia (a decreased amount of blood in the body), resulting from bleeding, the excessive use of diuretics, vasodilators, or other types of drugs, dehydration, or prolonged bed rest. It also occurs in people with anemia.
http://en.wikipedia.org/wiki/Orthostatic_hypotension

The combination of CFS, and hypovolemia/hypotension could definitely make it almost impossible for you to do anything that requires much physical exertion, (such as exercise).

Remember though, when you read anything that I write, I am not a doctor, I'm just a researcher, trying to learn as much as I can about what ails us.

Love,
Tex

P S You're right about most doctors thinking that one has to have massive bleeding in order to have hypovolemia. They can be very narrow minded at times. As Polly says, "Doctors are trained to look for horses, not zebras".
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Tessa
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Post by Tessa »

Hi Tex,

Yes, drinking more fluids before the blood test (in fact, Aquarius)helped a lot.

Well, they´ve never checked adrenal insufficiency and it was me who asked them to check cortisol, as well as aldosterone.
On my last blood test in May cortisol hormones were 19.0 mcg/dl (which seemed to be within normal values), but aldosterone were lower than it should be: 51.00 pg/ml (with a special note of the Lab, stating that the amount was below the normal value).
Furthermore, urine Potassium was below normal values too at 17 mEq/l (normal values: 25-100), HCM was 26.7 pg (normal values: 27-33.5) and Lynphocites were 17.4 % (normal values: 20-53).

According to that blood test (and others before) I do not have anemia.

REgarding the Fatigue... It triggers it only when I am feeling dizzy, and with all the "POTS" symptoms, low blood pressure, etc... But that seems quite normal with all these health reactions...

In relation with the beta blocker taking the heart rate down, it is true. I had to stop taking it in order to have the allergic test done and my heart rate was 90 bpm at rest. Taking the beta blocker it is about 60 to 66 at rest.

But, if the heart increases the rate because it is trying to compensate the insufficient circulation and with the beta blocker I am avoiding this to happen, that could be a reason for me still feeling unwell.

You see, it is not hard exercise that makes me sick, it is cooking, making the housework, walking, walking stairs up...

For instance, a few weeks ago my husband and me thought that it could not be healthy for me not to exercise. On my last appointment with the Cardiologist he had said that it would be a good idea to think about exercising if I was feeling better with the treatment... So we decided to walk.
We stopped and sat a few minutes while walking. When we returned home (40 minutes later), I was out of breath, had difficulty to breath, was feeling dizzy, exhausted, lightheaded, with chest discomfort... I went to bed. I was feeling dizzy and thought I would pass out... The thing is I fell asleep and did not woke up until hours later. My husband worried a lot.

Of course, we decided not to walk any more... At least not until we know exactly what is going on. Our intention is to visit a Cardiologist we knew last year (who was really nice) and ask for help. He is a wellknown surgeon of cardiovascular diseases. The problem is that he is not under our district and we have no legal access to him, but it could be worth trying. What I pretend is to get all the necessary information to give him and shorten the scarce time we will have to talk with him, if he agrees to spend some time with us...
I have to take notes as to what we will tell him...

Thank you for refering to the website, Tex.
The thing is I do not know the kind of POTS I have, could be NMH, CFS, both ?
I will have to investigate more about it.

The combination of CFS, and hypovolemia/hypotension could definitely make it almost impossible for you to do anything that requires much physical exertion, (such as exercise).
Yes, that´s another possible cause.

I do remember that you, well that we are no doctors, Tex :smile: (I will include myself). :wink:
I am a researcher too. Thanks to the research I have done so far, I have been able to give an idea to doctors on to what to look for... For instance with Gluten sensitivity, MC, POTS, etc.
I agree with you, above all, my aim is to learn the most I can because it is our health and we have to be informed.

Love,
Tessa
DX Secondary Adrenal Insufficiency= Panhypopituitarism,POTS & MC. Anaphylactic reaction to foods & some drugs.
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
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Post by tex »

Tessa,

Low aldosterone can cause low blood pressure. Read what this doctor has to say about it:

http://www.csrf.net/FriedmanArticle.txt

It's possible that adrenal fatigue, (resulting in inadequate aldosterone production), could be the cause of your POTS.

Cortisol levels, of course, depend on the time of day that the samples are taken. Did they check the level of potassium in your blood? Low potassium in the urine might just mean that your body is retaining it, rather than purging it.

However, if your body is actually low on potassium, it can result in, (among other things), weakness, tiredness, or cramping in arm or leg muscles, fainting due to low blood pressure, heart palpitations, passing large amounts of urine, or feeling very thirsty most of the time, etc.

In other words, you might have a combination of things that are not quite right, contributing to your problems with blood pressure regulation.

From your description, your symptoms of weakness, lack of energy, etc., are so severe, that I think it is very likely that you may have chronic fatigue syndrome, (unless you are very low on potassium - if you are low on potassium, then this could cause you to be tired and low on energy).

Love,
Tex
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Post by Tessa »

Thank you, Tex.

I am going to investigate all this in order to have enough information to know exactly what to ask for my next blood test.

You answers have been of great help and support, too. You are always willing to help, no matter the time, the effort, the subject...
:thanks:

As always, I will keep you updated, my dear friend.
Thank you for your time and interest.
Not only it is your research, it is your great heart that helped a lot during our long "conversation". :pulsinghearts:
It is your humanity that keeps this forum alive and united.
:thumbsup:

:yourock:

Love,
Tessa
DX Secondary Adrenal Insufficiency= Panhypopituitarism,POTS & MC. Anaphylactic reaction to foods & some drugs.
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
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Post by tex »

Tessa,

As always, you are more than welcome. And, I appreciate the kind words, my dear friend.

I hope that your doctors will cooperate, and give you the tests that you need, so that they can figure out what is wrong, (or so that you can figure out what is wrong). Who knows? You might be able to eliminate your POTS problem, just by taking a hormone supplement, or maybe minimize it, by improving your electrolyte balance.

I wish you the best, and I'll keep my fingers crossed.

Love,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Tessa »

Let´s hope it, Tex. That would be great.

Will keep you informed

Love,
Tessa :pulsinghearts:
DX Secondary Adrenal Insufficiency= Panhypopituitarism,POTS & MC. Anaphylactic reaction to foods & some drugs.
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
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