Cardiologist and Beta Blockers

[Vasha]

Thank you for the responses. I also have pretty severe tachycardia. The cardiologist said my heart isn't resting long enough to get adequate oxygen everywhere it needs to be. When I stand up, the blood pressure drops and the heart races even faster. However, the tachycardia is now all the time. It's just worst when it is hot out or when I am standing.

I guess the best thing to do is to just try a beta blocker to see what happens. If things get worse, I can always go off.

Hi @Mya Symons -

I take low-dose propanolol and metoprolol (a time release one) at night. (Sorry! don't know the dosages, but they are low.)

I assume these help--but I do also have to take fludrocortisone and use IV saline to keep my HR down and blood pressure up.

One thing to think about is that beta blockers, of course, lower blood pressure, so you and your cardiologist might have to experiment some with the dose to benefit the tachycardia while balancing out any blood pressure effects. As others have noted, fludrocortisone and desmopressin are often prescribed to help with this (plus eat salt!).

Also, if one beta blocker doesn't work for you or has side effects you can't tolerate, another might.
It really makes a difference (for me anyway) to get the tachycardia under some control.

-Vasha

 

[Mya Symons]

Hi @Mya Symons -

I take low-dose propanolol and metoprolol (a time release one) at night. (Sorry! don't know the dosages, but they are low.)

I assume these help--but I do also have to take fludrocortisone and use IV saline to keep my HR down and blood pressure up.

One thing to think about is that beta blockers, of course, lower blood pressure, so you and your cardiologist might have to experiment some with the dose to benefit the tachycardia while balancing out any blood pressure effects. As others have noted, fludrocortisone and desmopressin are often prescribed to help with this (plus eat salt!).

Also, if one beta blocker doesn't work for you or has side effects you can't tolerate, another might.
It really makes a difference (for me anyway) to get the tachycardia under some control.

-Vasha

Did you have to test low on cortisol before you were prescribed the fludrocortisone? I just had a cortisol test and am waiting for the results. However, it was to test for Addison's disease so I am not sure if it is the correct test for cortisol problems other than Addisons. I assume so. My endocrinologist wanted to rule out Addison's before moving on to other areas.

I'm also wondering right now why she didn't tell me beta-blockers would lower my blood pressure and if I can trust her to prescribe me the right medicines.

 

[MeSci]

Did you have to test low on cortisol before you were prescribed the fludrocortisone? I just had a cortisol test and am waiting for the results. However, it was to test for Addison's disease so I am not sure if it is the correct test for cortisol problems other than Addisons. I assume so. My endocrinologist wanted to rule out Addison's before moving on to other areas.

I'm also wondering right now why she didn't tell me beta-blockers would lower my blood pressure and if I can trust her to prescribe me the right medicines.

There seems to be a significant difference in cortisol according to age and gender, so it would be helpful if people gave these.

 

[Vasha]

Did you have to test low on cortisol before you were prescribed the fludrocortisone? I just had a cortisol test and am waiting for the results. However, it was to test for Addison's disease so I am not sure if it is the correct test for cortisol problems other than Addisons. I assume so. My endocrinologist wanted to rule out Addison's before moving on to other areas.

I'm also wondering right now why she didn't tell me beta-blockers would lower my blood pressure and if I can trust her to prescribe me the right medicines.

Hi @Mya Symons -

You've got an on-the-ball endocrinologist! Addison's often gets missed or not ruled out for a really long time. I am somewhat unusual in that yes, I do have Addison's according to the ACTH stimulation test, so I needed fludrocortisone for that . . .in that case it is not for low cortisol--it is to replace aldosterone, the other important adrenal hormone besides cortisol. People with "primary" adrenal problems--Addison's--can lose their aldosterone as well as their cortisol. My aldosterone levels were very low.

But this rare, and not necessary for florinef to be prescribed-- it's a common POTS medication. I was prescribed it months before they thought to test for Addison's just for the POTS and low blood pressure.

Beta blockers are usually prescribed (in higher doses) as blood pressure medicine, so I'm sure she has it in mind. At the low doses used for POTS, they are used to lower heart rate without unduly lowering blood pressure. At the right dose for a person, they may not lower it at all. My understanding is that there's a bit of a balance and trial and error. E.g., treat the tachycardia and then see if blood pressure needs "bulking up."

Hope this helps!

-Vasha

 

[Mya Symons]

Hi @Mya Symons -

You've got an on-the-ball endocrinologist! Addison's often gets missed or not ruled out for a really long time. I am somewhat unusual in that yes, I do have Addison's according to the ACTH stimulation test, so I needed fludrocortisone for that . . .in that case it is not for low cortisol--it is to replace aldosterone, the other important adrenal hormone besides cortisol. People with "primary" adrenal problems--Addison's--can lose their aldosterone as well as their cortisol. My aldosterone levels were very low.

But this rare, and not necessary for florinef to be prescribed-- it's a common POTS medication. I was prescribed it months before they thought to test for Addison's just for the POTS and low blood pressure.

Beta blockers are usually prescribed (in higher doses) as blood pressure medicine, so I'm sure she has it in mind. At the low doses used for POTS, they are used to lower heart rate without unduly lowering blood pressure. At the right dose for a person, they may not lower it at all. My understanding is that there's a bit of a balance and trial and error. E.g., treat the tachycardia and then see if blood pressure needs "bulking up."

Hope this helps!

-Vasha

Thank you for the good information Vasha. I really appreciate it. I'm curious, do you also have Hashimoto's and did you have a weird craving for salt before you were diagnosed with Addison's?

 

[Vasha]

Thank you for the good information Vasha. I really appreciate it. I'm curious, do you also have Hashimoto's and did you have a weird craving for salt before you were diagnosed with Addison's?

Hi @Mya Symons,

Yes, I do have Hashimoto's, and oh yes to the salt. Pickle juice straight from the jar- yum!

After I was diagnosed, I read a couple of Addison's sites and found out that pickle juice and lemons with salt are super common cravings. It's because we don't have enough aldosterone, which regulates salt. I'm not sure why the acid (or if that's just a coincidence).

(I had hyponatremia (low sodium) and high-ish potassium on blood tests for months before the ACTH stimulation test--this is caused by the lack of aldosterone. My GP was quite concerned about the low sodium, which can be dangerous, and kept testing, but couldn't figure out why it was happening and just insisted I must be drinking too much water. And of course I needed to drink water because my blood pressure bottomed out every time I stood up. So we compromised on me drinking lots of salty water--still hyponatremia. Florinef fixed that.)

-Vasha

 

[taniaaust1]

my cfs specialist dont like prescribing betablockers for his POTS patients as he said they dont often find them helpful, he prefers to prescribe florinef.

I think you just need to trial a few things for yourself to figure out if something is going to help or not. I know some have found beta blockers helpful. (I myself havent trialed them thou).

 

[Sushi]

I know some have found beta blockers helpful.

I recently had a genetic test which showed that I cannot metabolize one of the most commonly prescribed beta blockers. I wonder if some people have trouble with them due to genetic pathways?

 

[hamster336]

I was diagnosed yesterday after a Tilt Table Test at St Thomas Hospital in London.....With Hyperadrenergic POTS
The cardiologists there have been suggesting Ivabradine. Apparently it deals with the higher heart rate but doesn't lower it too much as a normal beta blocker would....

 

[ryan31337]

Congrats on making some progress @hamster336. Do you mind if I asked what their tilt protocol was? Did they take blood alongside the test?

I'd heard similar things about Ivabradine reducing the heart rate proportional to the tachycardia present, might be worth a look for me as I'm bumping along in the mid to high 30bpms at rest on beta blockers at times.

 

[hamster336]

Thanks @ryan31337.
They didn't take blood. BP and HR were measured supine then, as I was raised there was the surge in HR and BP. He said adrenalin surged as well. ? I was then given the Niyroglycerin to provoke symptoms.
I was told Hyperadrenergic POTS. Certainly my BP didn't go down much even with the Niyroglycerin.

The too cardiologists I have seen recently both seemed keen on Ivabradine as less of a blunt instrument than conventional beta blockers.

I've also been referred to Dr Nicholas Gall, the autonomic specialist
Worth a try if you're in the London area!

 

[hamster336]

Sorry @ryan31337....I see you've already seen Dr Gall. Have you had your Tilt Table yet?

 

[Alisha12]

Had been taking low dose atenolol..just 6.25 mg bt it works! But that too with florinef otherwise causes pre- syncope.

 

[bertiedog]

was diagnosed yesterday after a Tilt Table Test at St Thomas Hospital in London.....With Hyperadrenergic POTS
The cardiologists there have been suggesting Ivabradine. Apparently it deals with the higher heart rate but doesn't lower it too much as a normal beta blocker would....

That's the sort of POTS I have and as mentioned 20 mg propananol once or twice daily works fine. Only need half a tab of Fludro in hot weather.

BTW I am on 5mg Prednisolone and 2.5 h/c for my adrenals and 1 grain dessicated thyroid for Hashimotos which seems to have drastically improved since going gluten and lactose free.

Pam

 

[ryan31337]

I see you've already seen Dr Gall. Have you had your Tilt Table yet?

Yep, he's a good one! Don't be shy about discussing all your symptoms either, without any prompting he referred me on to his neuro (sleep clinic), endo & gastro colleagues, all apparently clued up on POTS.

I'm still waiting on the tilt table + active stand + carotid massage tests ('thorough' is the word I hear a lot with reference to Dr Gall!!). I did however have a positive tilt table test previously, syncope after 5 minutes or so upright. I don't think I had a POTS response that time, though I was on beta blockers + salt/fluid loading, which had shown a big tachycardia reduction in my own standing tests too.

 

[hamster336]

Thanks for advice everyone. ....This POTS world is new to me. Unexpected after ten years of being ill..didn't think it was part of my particular ME.
Have now got to address the weird neuropathies I have. All part of the malfunctioning ANS I suppose.....

 

[Mya Symons]

I got my test results back and it is looking like it is not POTS, it is something in the endocrinology area. Of course I have to go back to the doctor to interpret the results and for more testing, but, until then, does anybody know what this could mean? I am most worried about the "strongly suggestive of a pheochromocytoma". However, I do not know how to read these results. They are very confusing. AM I READING IT WRONG AND IT IS JUST SAYING IF IT IS ELEVATED YOU HAVE THIS. BUT, IT IS IN THE NORMAL RANGE?

COMMENTS: FASTING 12+HRS FASTING:YES Test Name Results Reference Range Lab CORTISOL, TOTAL 6.8 3-22 mcg/dL NW Reference Range: For 8 a.m.(7-9 a.m.) Specimen: 4.0-22.0 Reference Range: For 4 p.m.(3-5 p.m.) Specimen: 3.0-17.0 * Please interpret above results accordingly *

METANEPHRINES, FRACT, FREE, LC/MS/MS, PLASMA EZ METANEPHRINE <25 < OR = 57 pg/mL NORMETANEPHRINE 84 < OR = 148 pg/mL TOTAL METANEPHRINE 84 < OR = 205 pg/mL Elevations > 4-fold upper reference range: strongly suggestive of a pheochromocytoma(1). Elevations >1 - 4-fold upper reference range: significant but not diagnostic, may be due to medications or stress. Suggest running 24 hr urine fractionated metanephrines and serum Chromogranin A for confirmation. Reference: (1) Algeciras-Schimnich A et al, Plasma Chromogranin A or Urine Fractionated Metanephrines Follow-Up Testing Improves the Diagnostic Accuracy of Plasma Fractionated Metanephrines for Pheochromocytoma. The Journal of Clinical Endocrinology and Metabolism 93 (1),91-95, 2008. http://education.questdiagnostics.com/faq/MetFractFree

 

[Mya Symons]

I am looking at it again. I think I am reading it incorrectly. What they put there was just more information. Whew! I had a slight panic for a second.

I got my test results back and it is looking like it is not POTS, it is something in the endocrinology area. Of course I have to go back to the doctor to interpret the results and for more testing, but, until then, does anybody know what this could mean? I am most worried about the "strongly suggestive of a pheochromocytoma". However, I do not know how to read these results. They are very confusing. AM I READING IT WRONG AND IT IS JUST SAYING IF IT IS ELEVATED YOU HAVE THIS. BUT, IT IS IN THE NORMAL RANGE?

COMMENTS: FASTING 12+HRS FASTING:YES Test Name Results Reference Range Lab CORTISOL, TOTAL 6.8 3-22 mcg/dL NW Reference Range: For 8 a.m.(7-9 a.m.) Specimen: 4.0-22.0 Reference Range: For 4 p.m.(3-5 p.m.) Specimen: 3.0-17.0 * Please interpret above results accordingly *

METANEPHRINES, FRACT, FREE, LC/MS/MS, PLASMA EZ METANEPHRINE <25 < OR = 57 pg/mL NORMETANEPHRINE 84 < OR = 148 pg/mL TOTAL METANEPHRINE 84 < OR = 205 pg/mL Elevations > 4-fold upper reference range: strongly suggestive of a pheochromocytoma(1). Elevations >1 - 4-fold upper reference range: significant but not diagnostic, may be due to medications or stress. Suggest running 24 hr urine fractionated metanephrines and serum Chromogranin A for confirmation. Reference: (1) Algeciras-Schimnich A et al, Plasma Chromogranin A or Urine Fractionated Metanephrines Follow-Up Testing Improves the Diagnostic Accuracy of Plasma Fractionated Metanephrines for Pheochromocytoma. The Journal of Clinical Endocrinology and Metabolism 93 (1),91-95, 2008. http://education.questdiagnostics.com/faq/MetFractFree

 

[ryan31337]

Hi @Mya Symons,

I can't comment on the specifics but testing to rule out a pheochromocytoma with symptoms like ours is the norm, so don't panic! My POTS specialist commented that its entirely likely that I have 'just' hyperadrenergic POTS but that the adrenal tumour needs to be ruled out - entirely sensible. Still waiting for my Chromogranin and 24hr urine tests

Ryan

 

[Alisha12]

Hi all..my noradrenalin level standing was 76 pg and after active standing for 15 min., it was about 47 pg. Can somebody interprete it? My doctors have no clue. I 've postural tachycardia as well as hypertension.can it be hyperadnergic pots?