Hi, new on here, and diagnosed with paroxysmal af about 4 years ago. All fine until a trip to A&E earlier this year with pulse 150-170 for four hours. Locum changed my tablets, blood pressure 188/90, another locum another change of tablets!! Can get no continuity of care and now seem to be ready for bed at 5.30pm and full of fluid.
4weeks wait to see another locum, 18 weeks wait to see a cardiologist.
Take Levothyroxine, Pradaxa, Bisoprolol, Amlodipine and a Statin.
Does anybody else just want to hide under the covers all day.
A friend who used to run into this kind of problem fairly often used to take herself to A. and E. when things got desparate...... it usually gor results and set her on the right road for a while.
Thanks for replying, hate to bother them unless really necessary. Have been told to go straight back if reach 120 for 15 minutes! Can do that on a quiet stroll.
I know the waiting list is long but are you on it? Ask your GP to refer you to an EP (electrophysiologist) who specialises in the electrical system of the heart. From there, you should get a bit more continuity and you can discuss medication and/or ablation options. Sooner you start this process the better.
I returned from holiday to find a letter from hospital saying last locum (GP) had asked for a referral but no appointments available as yet. I have had a 24 hour EEG which caught an attack but although I have had many EEGs, they don't always catch it. Have had loads of blood tests, but nobody has ever suggested an EP. Will definitely mention.
See CDreamer reply. Do not mention seeing an EP. Insist. Badger them. I know it's not easy but it is important that you get the right treatment. I changed doctors over the issue of treatment when I was first diagnosed.
If you want to catch the AF episodes, a Kardia machine is available for home use and costs about £100. It allows you to do your own ecg so you have a record to show doctors.
Also, if you can afford it you could see an EP privately for first assessment and then revert back to NHS.
Thank you, will definitely insist. I suppose nobody has bothered because I was fine for three years after diagnosis. Only recently have things got worse.
I made sure I logged everything in a note book. What happened how long. Dates all the different dr''s there names. Your med as changes. Really helped my EP consultant. He couldn't believe he hadn't seen me before now.
When you say locum - is that a locum GP? Continuity of care is not always about seeing the same doctor although I know some people like to.
If you have AF you should be seen and treated by an Eletrophysiologist and not just a cardiologist. You also have the right to be referred to a specialist of your choosing.
Dealing with any chronic condition is very tiring and if you are not treated appropriately it is going to feel very lonely and as if no one cares. Unfortunately the NHS is is in such a deprived state and demand so large that there are going to be long waiting lists. Many of us on this forum have seen an EP privately for a first consultation and then been transferred to NHS list.
If you visit the AFA website you will find lots of information on AF and various treatment options and the sorts of tests you should be having. - such as ECG and echocardiogram to see if there are any structural changes to the heart.
AF will make you feel tired, as will many of the medication which all have side effects and any diagnosis needs time to come to terms with.
Inform yourself, keep returning to GP and pressure them for referral to a specialist, I learned to grow a backbone with AF and not just accept the status quo - lo and behold I suddenly got noticed, taken seriously and treated,
Please do ask any questions, this is such an informed and knowledgeable group.
PS - you should NOT be full of fluid with lone AF so something else is going on - please do go back soon and ask for investigations.
Basic tests are full blood counts, liver and kidney functions and thyroid function. Make sure you have these and get the results - they will say whether or not they are in range - at our surgery you have to pay for a print out - about 10p a sheet.
Hope that helps somewhat, very best wishes CD.
Hello Hylda, and welcome to the place you would rather not be. The advice you have been given about seeing an EP is good, the problem is that your GP's/Locums may scratch their heads because it's not unheard of that some GP's do not know what an EP is, let alone where they operate. If you have an enquiring mind, can I suggest you do a little research on the net and using the AFA information sheets to find out which hospital specialising in arrythmias is nearest too you.
It might be that you can find the name of an EP attached to the hospital via the hospitals webpage or using the AFA link below:
Select the UK in the "countries" box. This list is not definitive, my EP works at St George's Hospital and does not appear on the list.
Once you have decided who you would prefer to see, request your GP to make a referral. It will not be a quick process and you may decide to seek a private appointment as has been suggested. Hope this helps as I know it's not much fun not knowing what to do for the best....John
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Many thanks John. I will certainly insist on an appointment with an EP and if I can't get on an accelerated list then will go privately.
D
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Stopped 2.5 of Bisoprolol this morning as look 9 months pregnant and feel awful. Rang surgery and insisted on talking to a GP. Have blood tests booked for tomorrow and see another GP Thursday to discuss results. Still taking Amlodipine 5mg. Has anybody else just stopped taking Bisoprolol? Cannot go on feeling like this.
D
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Sorry John, can't get your link to work. D
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Try this one.....you will still need to put UK in the search box......let me know if it works......John
Hi A locum is a doctor who covers while the usual surgery doctor is away and A&E stands for Accident and Emergency where you can go if you have a real problem out of hours. D
Interesting how language can surprise you. Thanks!> I have a daughter who lives In BC and was visiting me in California. She asked a store clerk where the "washroom" was. The girl just stared at her thinking she meant laundry room. We still laugh about it.
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