Loop recorder recently fitted need advice!

[Surfer1986]

I'll keep this as short as i can ...Im 33 & ive got Graves disease, in January I had a total thyroidectomy & I was so happy thinking id finally get my life back and get rid of most or all of the awful symptoms i'd been suffering for nearly 2 years including high blood pressure and palpitations...but no!!! Things have only got worse my palpitations are more intense & more frequent, im now breathless whenever I exert myself i cant even walk upstairs without having to sit down as soon as im at the top, ive also started to faint.

I was admitted to hospital several times sent by my GP because my heart rate was 150 plus and each time was told i was just recovering from surgery, that thyroid surgery was pretty major & that my bodys in shock from not having one...

My GP scheduled a heart ultrasound & I was told that its not normal but its not entirely abnornal either ?? and was scheduled to have a stress MRI but because of everything happening right now it was cancelled.

Well i collapsed last week & ive no idea how long i was out for (i live alone) and when i next spoke to the GP she spoke to a cardiologist who said i needed to go to hospital which right away. I was kept in overnight and the next day went by without me speaking to anyone. Finally at about 5.30pm a Nurse told me she was taking me to cardiology outpatients where id be spoken to & discharged so off we went...next thing im being taken into a room by a guy in scrubs who whilst walking is talking about some procedure hes about to do on me, well it turns out the cardiologist had written in my notes that hed spoken with me that morning and gone through a plan with me but he hadn't!!!!! I ended up having a loop recorder inserted but it was very very briefly explained to me. I was sent home with a thing i was told to plug next to my bed and some kind of button device and told they'd contact me in about a month.

I'm so upset and frustrated ive got no idea how the thing works or if im meant to do anything. If i collapse again what happens? Please anyone if you have any advice id be so grateful im feeling so lost

[Shoshov]

hi surfer. great name by the way. don’t worry it’s all pretty straightforward. i had one fitted about 18 months ago for dizzy spells and fainting. what you have to do is when you get any symptoms like your high heart rate or dizzy spell etc you hold the little handset they gave you against the recorder and press the button. this marks the recording to see what the hearts doing on the lead up to the symptoms. you then record symptoms,time,duration and what you were doing when symptoms occurred. you must keep a full log of episodes as they won’t act on evidence retrieved from recorder if you haven’t written down the symptoms to match up with event on recorder. after every 3 episodes you record you have to send it to hospital. this is where the machine comes in. follow directions as they come up on machine screen. it’s very easy. the machine reads the recording and sends it to hospital where someone constantly monitors them. it’s really a serious bit of kit and so easy to use. it also detects changes to the heart rhythm while asleep and again sends it to hospital. i hope this all makes sense. if you have any other questions feel free to ask. you can relax knowing now that big brother is watching you🤣❤️shiona

[Surfer1986 in reply to Shoshov]

Hey there Thankyou SO much for taking the time to reply I really appreciate it. Everything is now a lot clearer but I’m more than a bit upset because with the handheld thing they just told me to press it, they didn’t say anything about holding over the chest....So all this time (now over a week) I’ve been pressing it thinking I’ve been recording symptoms and it’s not recorded anything! I did what you said and a little green light came on the handheld thing so I now know it’s recorded!

Thankyou so much xxx

[Andyd57 in reply to Surfer1986]

I've had 1 fitted 18 months ago.for the same reason. Mine are very infrequent. The device by the side of your bed records everything as long as you are 6 feet within it. I have to take a reading every 3 months. It's really simple.. just put it against your loop recorder in your chest and follow the instructions. I get a certain date every 3 months to perform the task. Any problems let me know. You will be fine 😎😎

[Surfer1986 in reply to Andyd57]

Thankyou for your reply!

[Shoshov in reply to Surfer1986]

your very welcome. at least your in the loop now🤣. keep safe my friend ❤️

[lettingoffsteam]

That is terrible...I'm sorry you have been treated so badly. You should definitely make a complaint about this to PALS but, in the meantime you need to know what to do.I have no experience of a loop recorder so I'm afraid I can't advise. Have you got anyone who can check in with you or you can contact them if needed for your own safety? On Monday I would definitely ring PALs and maybe see if you can get through to the cardiology department as well.I'm sorry I can't be of more help and hope you get the answers you need ASAP.

[Surfer1986 in reply to lettingoffsteam]

Hi there Thankyou for your reply Well I contacted the cardiology unit where it was fitted on Friday 27th ..the day after it was fitted, to get advice as it had bled a lot overnight..no one answered so I left a message and to this day I’ve had no response! I understand there’s so much going on now with Covid19 and everyone is under a lot of stress, but to send me home without the correct instructions or any contact is pretty awful. I had a faint last Sunday which I thought I recorded ....but it turns out because I wasn’t given the correct instructions I didn’t record anything!!

Anyway thanks again for your reply x

[Benzman in reply to Surfer1986]

I have had 1 fitted for 3+ years and it should have been removed next week but has been postponed because of coronavirus. What Shoshov has told you is perfectly correct but the device will also do it automatically if it senses an erratic heart beat, and heart beat is all that it is monitoring. The life of the implant is 3 years as the battery lasts about 3.5 years. Any recordings are sent to the manufacturer in the USA and they route them on to your home hospital. If there are no recordings for a while you will probably get a call from the hospital to ask you to do a manual test recording. You should only trigger a manual reading if you feel unwell and that it could be cardiac related. The hospital will not thank you for lots of irrelevant data (I was ticked off once in the early months!)

[Surfer1986 in reply to Benzman]

Thanks so much for the reply 😊 So if there are any problems do they call you or do I have to wait until my follow up with the cardiologist to go through things? 😊

[lettingoffsteam in reply to Surfer1986]

Ah right,so you've heard from cardiology.Still shoddy though.

[Fazerboy]

Hi, I've got a Medtronic linq loop recorder. If I think my heart rate is not normal I have a sort of keyfob device that I have to press a button on it and hold it to by chest near where the recorder is. This tells it to save 8 minutes worth. When it is next convenient I go to my recorder device that is by my bed. I pick up the handset and the screen shows that it wants me to hold it against my chest. This lets the saved data go from my loop recorder to the handset. It then shows that it wants me to replace the handset. I do this and it shows a green line (like on a computer) which shows it is sending the data to the cardiologist. It shows a tick or similar when it is done. I then phone the cardiologist team to tell them that I have sent a recording. I tell them what I was doing and why I thought I needed to send it. They then have a look at it and then phone me back to tell me what it shows.

[Benzman]

I guess you need to check with your cardiology department as to what is the follow up procedure. I'm under the Royal Bournemouth Hospital , I'm certainly not required to phone them, they phone me. Last October I had a really bad angina attack & I was taken in to RBH and soon after arrival someone was sent down from cardiology check the loop recorder for any readings. There were none since the previous February.