HHT and AF

[CTblood]

I had an ECG last week which showed an irregular heartbeat, GP prescribed Tildiem 60mg twice a day. Referred me to Cardiologist and for an echocardiogram. My added complication is that I have HHT which means I have daily nosebleeds and also have bleeds in my stomach so have to take iron tablets for anaemia. In the few days that I've been taking Tildiem the nosebleeds have increased dramatically and take longer to control, I'm guessing this is due to my blood being thinner. Does anybody else have these issues and advice please? Thanks

[Milkfairy Heart Star]

Hi CTblood

Welcome to the forum

Diltiaziem is a calcium channel blocker and it is usually prescribed to treat angina and high blood pressure

bnf.nice.org.uk/drug/diltia...

I suggest you back to your GP and discuss your increased nose bleeds with them.

Are you under the care of a Haematologist?

Perhaps get in contact with them too so that they can coordinate your medication with the Cardiologist.

[CTblood in reply to Milkfairy]

Thanks for your reply, my GP has referred me to a cardiologist but I've been told there is a 16 week wait! I've also got asthma so GP said he couldn't prescribe beta blockers so went for calcium blocker. I'm not under care of a haematologist. I don't really know whether to continue taking the tablets or wait to see a consultant. My GP was not really sure how to treat me with all my health issues.

[Milkfairy Heart Star in reply to CTblood]

Yes it sounds challenging.

I can't take beta blockers either and one of the alternatives has to be prescribed at first ny you've guessed it a Cardiologist!

I suggest you discuss with your GP which is more important to treat first more nose bleeds or your arrhythmia?

Do you know the name of the Consultant who have been referred to?

If you do make contact with their medical secretary and ask for a cancellation if it comes up.

[MRSLADP]

If your nosebleeds wouldn't stop then you'd have to go to A & E, where (if you told them about your recently diagnosed arryth. and new medication), they'd have to do the requisite tests under a cardiology team's advice.

[MountainGoat52]

Tildiem appears to have been prescribed to calm your heart and rdeuce the iregularity of your heartbeat pending the forthcoming consultation. I was prescribed this drug for 6 weeks after a triple bypass, with the specific purpose of it preventing arterial spasm. I do not see how it has caused your blood to thin, but maybe that is a side effect.

The increased difficulty in stopping your nose bleeds should be referred back to your GP because the same may be occurring in your stomach. You should not accept the worsening of one condition in order to (hopefully) improve another. There are alternative drugs that should do the same job as Tildiem, without causing the increase in the bleeds you are experiencing.

[CTblood]

Thanks for your replies. I've had the choose and book come through today and it says there are no appointments available! 111 days is the average wait. Trying to get an appointment with GP next week.

[Milkfairy Heart Star in reply to CTblood]

😲😱

Did they give you several choices of hospital?

Yes get back to your GP....how frustrating and stressful for you I am so sorry.

[CTblood]

No, only one hospital to choose! I'm thinking about going private just so I can get an "expert" to make sure my GP has given me the right pills! Thanks again.

[Jajarunner]

Hi

I'm in the same boat. When I had Atrial Fibrillation a month ago I was put on anticoagulants for one month, but told I'd have to be on them for life. When I reminded the cardiologist of my HHT he said, "oh, they are just nosebleeds". I had to get the nurses to witness a small nosebleed (in HHT terms) before thye took me seriously. In the end I did what my GP suggested and measured all my nosebleeds (yes, gross, measured into a jug!) And one I'd told them I'd lost 850 mil in 30 days they decided that perhaps I was right and anticoagulants were not for me!

So, in short, measure and record number, duration and volume of all bleeds, otherwise it's "just a nosebleed".

As a aside have you been seen by the HHT team at UCHL in London? Dr Clare Shovlin's team. Well worth it.

Good luck

[CTblood in reply to Jajarunner]

Hi, thanks for reply. It was Claire Shovlin who picked up the AF. I went to Benenden hospital to see cardiologist and scan last week. (Finally got NHS aptmt mid Feb..)He told me that Tildiam would have increased my nosebleeds (I stopped taking them after 7 days due to bleeds and feeling so ill!). I'm now waiting for the result of the 24 heart monitor to decide what treatment. What treatment are you taking? Dr Shovlin said I need to go back in 6 months for a liver scan as HAVM's could have triggered the AF. Thankfully my lungs are clear.

[Jajarunner]

Awaiting electrocardiology appointment at Papworth. HHT and af together complicates everything!! If you cannot take anticoagulants then there is the possibility of a LAAO. I read about it on a paper called: ncbi.nlm.nih.gov"LAAO in patient with HHT and Afib" by Mielczarek, Galasja, Gruchaka from Gdansk. You can search for it on Google.

[CTblood in reply to Jajarunner]

The cardiologist did say a left atrial appendage closure device could be considered... He also said when he gets the results of the 24 hour Holter monitor I may be prescribed a low dose of beta blocker or Digoxin. He said he would "caution" against formal anticoagulation due to the HHT. Good luck, look forward to updates.

[Jajarunner in reply to CTblood]

Yes, that's the thing Left Atrial Appendage and cant remember what the O stands for! It's so times called a Watchman which is one type.

[CTblood in reply to Jajarunner]

Update. Yesterday I saw a cardiologist privately and he prescribed 1.25mg Bisopropol to slow my "persistent" AF. He also said I could have the LAAO procedure and would transfer me to the NHS list. Concerned about reported Bisopropol side effects but will start taking them and see. Thanks for support and good luck.

[Jajarunner]

Ps for HHT transexamic acid when needed, laser ablation on nose every 1-2 years. Afib flecainide and betablockers, hope to get off latter asap 😁

[Milkfairy Heart Star in reply to Jajarunner]

I love this forum there is always someone around who is an expert patient by experience!

[Jajarunner in reply to Milkfairy]

I learn this time that I had to stand up for myself otherwise the experts all contradict each other. And the local ENT e ports were embarrassingly ill informed about HHT! I felt like telling them to go on Wikipedia and read about it!

[Milkfairy Heart Star in reply to Jajarunner]

I also live with an unusual heart condition too.

I often direct Cardiologists to the relevant research and information about my condition or if necessary my Specialist.

We do need to learn to be our own advocates!