First Cardiology Appointment - What To Expect?

[smish]

Hey guys,

I'm in the UK and have been referred by my GP to the cardiology department for "further investigation". Got my first appointment this evening. Anyone know what to expect? The GP doesn't really know what's up with me but POTS seems to fit very well. No fainting, but high heart rate which gets better when I lie down as well as numerous digestive issues, facial flushing and warm red blotches on my skin, tremors etc. Already had an ECG and 24 hour ECG so not sure what to expect from today.

Thanks for any advice in advance

[DeGenesis]

You say that you do not faint (syncope), but do you have pre-syncopal symptoms such as light-headedness, slowing of speech, and blurred vision? It is important to emphasize the impact that your symptoms are having on your QOL and your ability to perform "activities of daily living" (doctors love that phrase). If it has impacted your work or schooling, be sure to place particular emphasis there.

If the cardiologist doesn't know what's up, make sure you don't walk out of the office without an additional referral, perhaps to a neurologist with experience in treating in orthostatic intolerance.

[BeforeTheMorning]

Hi,

Are you going to be seeing a cardiologist that specialises in POTS, because some doctors really don't know anything about it. It might be a good idea to take some information about POTS with you just in case, I think that POTSUK.org has a print out thing you can show your doctor. And if he tries to tell you that all POTS patients faint, don't believe him. I saw someone who thought that all POTS patients fainted and he said that I couldn't have POTS because I didn't faint. Which isn't the case.

Make sure you tell your doctor about all your symptoms, it's probably a good idea to write yourself a list of symptoms, and when they occur, and what helps, what makes them worse and so on, just to help yourself remember, like when you are standing, do you feel your heart pounding, are you dizzy, do your feet go purple? etc....

Doing a 'Poor Man's Tilt Test' where you lie still for about 10 minutes and then quickly stand up and stand still for about 10 minutes while your heart rate and blood pressure are monitored can really help to show POTS. If this doctor thinks you could have POTS and he is any good hopefully he will refer you for further testing, to confirm the diagnosis.

I am really whacked right now, so I hope I haven't written anything that doesn't make sense!

Wishing you all the best for your appointment, let us know how it goes.

Lyla

[smish]

You say that you do not faint (syncope), but do you have pre-syncopal symptoms such as light-headedness, slowing of speech, and blurred vision? It is important to emphasize the impact that your symptoms are having on your QOL and your ability to perform "activities of daily living" (doctors love that phrase). If it has impacted your work or schooling, be sure to place particular emphasis there.

If the cardiologist doesn't know what's up, make sure you don't walk out of the office without an additional referral, perhaps to a neurologist with experience in treating in orthostatic intolerance.

Yes, I have a lot of dizziness particularly when shopping, my memory is awful and often the words all come out wrong. I also find restaurants hard work as I feel like I want to slouch down or put my legs up but obviously that's not possible when you're out for a meal!

One of my main problems is heat intolerance - I just got back from 2 weeks in Florida and I've always struggled with heat. The GP put me on Propranolol to deal with my tachycardia but nobody knows WHY I'm getting tachycardia. The Propranolol did help with the heat though - without it I was getting a heart rate of 150 standing.

I've always found having a shower in the morning an impossible task as they make me feel so ill so when I found out about POTS it was like everything fitted.

I've always been sort of "sickly" ever since I was about 12, but everyone just kind of accepted it and I guess I did too. Then in 2011 I got a weird thing where I did a particularly strenuous yoga (of all things!) session, and the next day started feeling terrible and felt totally wiped out - didn't leave the sofa for 2 weeks. After that the face flushing and red blotches started, as well as random bouts of nausea, all sorts of stomach problems and exercise intolerance.

Hi,

Are you going to be seeing a cardiologist that specialises in POTS, because some doctors really don't know anything about it. It might be a good idea to take some information about POTS with you just in case, I think that POTSUK.org has a print out thing you can show your doctor. And if he tries to tell you that all POTS patients faint, don't believe him. I saw someone who thought that all POTS patients fainted and he said that I couldn't have POTS because I didn't faint. Which isn't the case.

Make sure you tell your doctor about all your symptoms, it's probably a good idea to write yourself a list of symptoms, and when they occur, and what helps, what makes them worse and so on, just to help yourself remember, like when you are standing, do you feel your heart pounding, are you dizzy, do your feet go purple? etc....

Doing a 'Poor Man's Tilt Test' where you lie still for about 10 minutes and then quickly stand up and stand still for about 10 minutes while your heart rate and blood pressure are monitored can really help to show POTS. If this doctor thinks you could have POTS and he is any good hopefully he will refer you for further testing, to confirm the diagnosis.

I am really whacked right now, so I hope I haven't written anything that doesn't make sense!

Wishing you all the best for your appointment, let us know how it goes.

Lyla

Thank you - I've no idea which cardiologist I'm seeing and whether they know anything about POTS. I have done a few tests on myself laying down and then standing and my heart rate is all over the place and definitely affected by standing. Some times it's a definite increase, even increases by about 50bpm, other times just by 20 or so. I'm hoping they catch me on a bad day or they'll think I'm making it up!

[dkd]

They will probably do an EKG to check your heart rhythm and hopefully schedule to do a tilt table test. Maybe a Holter monitor for a few days also.

It is a good idea to write everything down that you want to present as symptoms in case you forget something. I always get back to my car after the appointment and remember something that I meant to say or ask about.

An electrophyisiologist (EP) is a cardiologist who specializes in heart rhythm so hopefully you'll get to see one of those.

Some cardio testing I've had: several EKGs, 48 hr holter monitor, treadmill stress test, nuclear stress test, transesophogeal echocardiogram, tilt table test. I think that's all--that's quite enough-haha!!

Good luck and I hope it's a productive appointment. Let us know!!

[looneymom]

Is it possible for you to take someone with you to the doctors appointment? Someone that knows of your symptom and sees your daily stuggles. If you can bring video tapes of tremors or other symptoms that happen just whenever thet decide to appear this may also help. I hope your doctor will do a tilt table test. That would be very helpful. Be sure to write down all your symptoms. My son is not a fainter but when he was able to stand his blood pressure would go up and blood pressure would drop. This also happens when he sits up for a long time in his wheelchair. The heat is very hard on him, so in the summer time, he is stuck in the house. Hopefully you have a doctor that will look for underlying causes. My personal opinion on POTS is that something underlying is causing this condition but you must be patient for a doctor to figure this out. Good luck with your appointment and hope you are able to get answers you need.

[Tuesday]

So it's been a long time since my first cardiology appt, but here's my experience:

After referral and a description of my symptoms and history, they ordered a tilt table test (TTT) and an echocardiogram. They will usually do an EKG, also, in the office. This requires them to place electrodes on your chest, and for a minute or so they will record the results. It only takes about 5 mins total.

The TTT and Echo you will probably need separate appointments for. Here is a good description of the TTT: http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879

The echocardiogram is just like an ultrasound, only of the heart. It takes about 20 mins, and you'll be asked not to have caffeine or nicotine prior to the test.

Other tests I have had include the 24 hour, and subsequently 30 day holter monitor. This is where they place electrodes (like they do for an EKG) and the leads/wires attach to a device about the size of a beeper that clips onto your belt. You'll be asked to record events (like palpitations, or increased/decreased heart rate) when you feel them, and then write in a journal. The recordings will be transmitted to a monitoring company over the phone, generally. In my case I had to hold the device up to a land-line phone and press the send button - just like an old school modem.

You may also have bloodwork done, depending on what is going on in your case.

Edited to add: I had fainted previously, but it was not a major symptom for me. However, I was having problems with being faint and dizzy a lot, which is what generally prompts the TTT.

[DeGenesis]

So it's been a long time since my first cardiology appt, but here's my experience:

After referral and a description of my symptoms and history, they ordered a tilt table test (TTT) and an echocardiogram. They will usually do an EKG, also, in the office. This requires them to place electrodes on your chest, and for a minute or so they will record the results. It only takes about 5 mins total.

The TTT and Echo you will probably need separate appointments for. Here is a good description of the TTT: http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879

The echocardiogram is just like an ultrasound, only of the heart. It takes about 20 mins, and you'll be asked not to have caffeine or nicotine prior to the test.

Other tests I have had include the 24 hour, and subsequently 30 day holter monitor. This is where they place electrodes (like they do for an EKG) and the leads/wires attach to a device about the size of a beeper that clips onto your belt. You'll be asked to record events (like palpitations, or increased/decreased heart rate) when you feel them, and then write in a journal. The recordings will be transmitted to a monitoring company over the phone, generally. In my case I had to hold the device up to a land-line phone and press the send button - just like an old school modem.

You may also have bloodwork done, depending on what is going on in your case.

Edited to add: I had fainted previously, but it was not a major symptom for me. However, I was having problems with being faint and dizzy a lot, which is what generally prompts the TTT.

You had a very good cardiologist. Most will just do the echo and ECG.

[Tuesday]

So it's been a long time since my first cardiology appt, but here's my experience:

After referral and a description of my symptoms and history, they ordered a tilt table test (TTT) and an echocardiogram. They will usually do an EKG, also, in the office. This requires them to place electrodes on your chest, and for a minute or so they will record the results. It only takes about 5 mins total.

The TTT and Echo you will probably need separate appointments for. Here is a good description of the TTT: http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879

The echocardiogram is just like an ultrasound, only of the heart. It takes about 20 mins, and you'll be asked not to have caffeine or nicotine prior to the test.

Other tests I have had include the 24 hour, and subsequently 30 day holter monitor. This is where they place electrodes (like they do for an EKG) and the leads/wires attach to a device about the size of a beeper that clips onto your belt. You'll be asked to record events (like palpitations, or increased/decreased heart rate) when you feel them, and then write in a journal. The recordings will be transmitted to a monitoring company over the phone, generally. In my case I had to hold the device up to a land-line phone and press the send button - just like an old school modem.

You may also have bloodwork done, depending on what is going on in your case.

Edited to add: I had fainted previously, but it was not a major symptom for me. However, I was having problems with being faint and dizzy a lot, which is what generally prompts the TTT.

You had a very good cardiologist. Most will just do the echo and ECG.

I was seeing both a Cardiologist and an Electrophysiologist. I don't know who ordered which test, because they have the same office and I usually see the nurse practitioner but I agree, I have a pretty good team

[Bigskyfam]

Everyone has given a good idea of tests and all. I have to say go in without all your eggs in one basket. My first visit I thought this is it! I'll get my diagnosis. It took a few visits and not a lot of feedback from them. I was crushed. Don't be let down. This is your first visit put all the cards on the table and ask questions. I was diagnosed after a second TTT because there were inconsistancies. I'm looking for another cardiologist.

[smish]

Hi again,
I had the appointment yesterday and although it wasn't terrible, it didn't really help me in any way. I had another ECG, they took my height and weight and then I saw the consultant. He was very nice but doesn't appear to have many ideas about what it could be. He said he would try and get to the bottom of it but that some people just have a high heart rate and have to take beta blockers for the rest of their life. I said I feel like it's worse when I'm standing, worse in hot weather - nothing. His response was "everyone has a reaction to standing up". He's ordered some tests to check adrenaline levels (24 hour urine test) and I'm going back in 3 months when I will take some POTS info with me and ask if it's a possibility.
It's like banging your head against a brick wall! Never get anywhere!

[BeforeTheMorning]

Hey,

Sorry your appointment didn't go very well. Actually it sounds an awful lot like my first cardiology appointment. I did have a couple more tests (probably because I have a close relative with congenital heart disease and they wanted to check everything out), but then I was told by the consultant that I probably needed to drink more and I was too skinny! I was pretty thin at the time as I'd lost weight due to the digestive issues with POTS but it wasn't really a very helpful appointment! After that doctor, I went through a specialist arrhythmia nurse and another cardiologist who was even worse than the first one. He did order a cardiac monitor and gave me an appointment to go back in 3 months, but I really didn't think I was going to get anywhere with him as he really didn't seem to believe me, so I cancelled the next appointment.

So I had a look online to find out about doctors who really know about POTS. The Dinet website has a list of specialists, and so does STARS and POTSUK. (You can also email some of these people for advice) Someone I know had been to a particular hospital and said how great they were, so I chose the POTS specialist at that hospital and asked my GP to refer me there, which he kindly did. Since going there it's been great because most of the people working there, running tests, etc actually know what POTS is, and the consultant I see is really knowledgeable and friendly.

Do you think that you could get your GP to refer you to see a cardiologist who specialises in POTS? I didn't know if my GP would actually refer me, but he did and it really was worth it. It's still a long road, but at least now I have my diagnosis and doctors who actually believe and support me.

Sorry this has got a bit long! I really hope you can find someone to help you.

Best Wishes,

Lyla