Angina

[Lind8]

Hi I have been experiencing chest pain on & off for the last few years. It comes on suddenly, severe chest pain but only lasts for about 5 to 10 mins. I have a few days experiencing episodes of this & then it disappears again. I had an episode on Friday so thought I had best get it checked out. I ended up in heart ward where they think I have angina. My INR was running very low at 1.2 ( my range is 3.5 to 4) but the pain can happen even if I am just sat down.. I thought angina could only happen if you were exercising? Has anyone else had experience of Angina that could give me more information ? . They have referred me for scan to check blood flow to heart & sent me home with a spray as ECG was okay.

[MaryF Administrator]

Hello, Angina can occur for a number of reasons, and I note your low INR at the time, remind me/us, are you under a recommended Hughes Syndrome/APS Specialist, if you are you do need to try and urgently bring your next appointment forward, as perhaps they may consider something like Fragmin alongside your Warfarin for when it drops like this. Please do get in touch with your medical team, it is important not to leave this. MaryF

[Lind8 in reply to MaryF]

Hi I am under an APS consultant but live miles away so was sent by by GP to my local hospital. I did ask them to contact my Heamotologist when they said it was Angina but they said no need. Thank you Mary I think I will just ring my APS consultant myself tomorrow. I do bridge with fondaparinux not sure of spelling) 7.5 mg injections when INR below 2.5. At beginning of week I got phlebitis as my INR had dropped and was losing sight in my left eye so had already started on injections but by thurs chest pains started. They said blood test for heart attack wasn’t raised and ECG was okay. I’m a bit confused by diagnoses to be honest.

[MaryF Administrator in reply to Lind8]

You clearly need more detailed investigations by a consultant who fully understands your disease, do let us know how you get on. If I were you I would also consider perhaps ordering your own private Thyroid tests, as the TSH does not pick up everything, it failed myself for years. IF you do not hafe enough T3 in your system, then that can impact heart health badly. These are the sort of tests, I order on myself and younger family members:

TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3

ncbi.nlm.nih.gov/pmc/articl...

It is a real shame that most doctors and labs can't order these tests, so no way around this currently, if you are in the UK and decide you want to order these, I can help find you a discount code.

Worth at least ruling it out!

MaryF

[Lind8 in reply to MaryF]

Hi Mary I live in the U.K. I would be really interested in doing a thyroid test, I know it used to be under active but I was underweight at time so didn’t treat it, now they say it’s normal but a detailed one would be great if you could recommend a company that would be great thank you

[MaryF Administrator in reply to Lind8]

I will message you. MaryF

[WendyWoo50 in reply to MaryF]

Please Mary help me to have these tests done.

[HollyHeski Administrator]

You can have stable & unstable angina, at rest & during exercise.

At least they are running all the tests hopefully just to reassure you.

Like MaryF says I think the key here is your low INR, if you have a specialist I would put a call through.

Any chest pain should be fully investigated. Hope you don't have any more pain

[Lind8 in reply to HollyHeski]

Thank you I know I should of got this looked at years ago. I am glad it is finally getting sorted . I think I have always put my pains down to having allergy to my foundaparanix injections, but I only take my injections when INR low so should of realised the connection. I will ring hospital in the morning.. thanks again

[HollyHeski Administrator in reply to Lind8]

Let us know how you get on?

[KellyInTexas Administrator]

Have a look at cardiac syndrome x. You can also have Prinzmetals without cardiac enzymes elevating.

I had an episode in Feb that landed me in the hospital for a brief stent for testing and observation. My INR was also sub therapeutic.

My cardiac stress test was fine. ( oxygen saturation was not- then rose to normal 99%.)

[Lind8 in reply to KellyInTexas]

Thank you just had a look now, The cardiologist I saw in hospital was taking about it being my small heart vessels & a certain type of scan I needed so I think this must of been what he was taking about. Did they give you any medication to treat it?

[KellyInTexas Administrator in reply to Lind8]

Yes, I think this is exactly what he was talking about.

No, unfortunately I’m in Texas and the doctors did not understand anything about it. I had to piece it together for myself with the help of forum and my GP brother in law.

If you find out let me know!

I did see my Rheumatologist after and he confirmed all of this . He told me the next time it happens to look at my hands ( as I have Raynauds) and see if they are in a profound exascerbation concurrently.)

[WendyWoo50]

I have had exactly the same experience as you and for me it's been going on for years too. Prof. D'Cruz said the pains was probably Lupus Pluricy so I tried not to worry.

In January my pulse dropped into the 30's. (I spent 3 weeks in CCU this year so far).

I've had lots of tests but as yet nothing has explained it.

I'm having a CT Angiogram soon in St Thomas (as I've reacted to dye previously, they left it till last).

I'm prob going to have a pacemaker for pulse but no idea what will happen with the pain.

Good luck - stay in touch 💋

[Lind8 in reply to WendyWoo50]

I will let you know what they say My pulse was okay but Blood pressure went up. I’m seeing Heamotologist next week and waiting for apt for scan but as INR back up will prob find nothing.. thanks for your reply hope you get sorted soon too x

[PepperT]

I also get angina type pain, I can be sitting or standing, it also comes on if I'm stressed. I used to get this alot before being diagnosed with APS. I only take aspirin and only get it occasionally now, I mentioned it to my rheumy who sent me for a treadmill test, I managed a full 10 mins without problems so it was put down to APS. I think I've read something about it written by Prof Hughes,this may have been 'patient of the month' in one of his blogs but can't remember when sorry

[WendyWoo50 in reply to PepperT]

That would be interesting to read. Does anyone remember ?

I'd like to send any info to my cardiologist.

I questioned Cardiac X Syndrome and Prinzmetals both locally and in London but it has always been dismissed.

It's so frustrating that there's not many people who understand APS and its diverse symptoms

Any cardiac into would be great please x

[Lind8 in reply to PepperT]

I’ve just had a look & can’t find. It would really useful to read. I know I too would be okay on treadmill test as try as stay quite active so interesting that you too get it sometimes too when sitting down. It’s quite debilitating when it comes on. Hope they get to the bottom of your pains x

[HollyHeski Administrator]

I have been diagnosed with APS related Cardiac syndrome X, only after extensive testing at St Thomas's, with all tests coming back negative.

Its really important to have these tests first, to rule out any serious conditions that can be treated.

I found the following link really interesting.

rbht.nhs.uk/patients/condit...

[Lind8 in reply to HollyHeski]

Thank you I think this describes my symptoms perfectly and fits in with my age, menopause etc,. & the tests I have had so far, so well worth discussing this with my Heamotologist

[ndstephens49]

Hi Lind8, I have had angina since my mid 40’s. I am now almost 70. I had a cardiac cath at that time and was found to have ‘unstable angina’ which always comes on at rest, never with exercise. It was diagnosed as Prinzmetals angina and I was prescribed cardizem. Prinzmetals angina is when the coronary arteries go into spasms, just like with Raynauds in your hands. I never found that nitroglycerin helped me. My ECG was normal at this time-only cardiac cath showed problems.

Fast forward to 2015. I became very exercise intolerant. Got short of breath walking a few feet. An echocardiogram was done that revealed a VERY low ejection fraction. Ejection fraction (EF) is a measure of how effectively your heart pumps blood. Normal EF is 70%. My EF was 20-25%. I had an emergency cardiac cath. I was in severe heart failure due not due to blocked major coronary arteries, but due to a blocked microvascular circulatory system in my heart. This is likely due to clotting problems. I now have 3 cardiologists, one who is on a transplant team.

I am being treated with meds for heart failure and a fancy synchronizing pacemaker and defibrillator that helps my heart beat more effectively. My EF is now up to 45%.

If you have any questions or doubts about heart issues, talk to your doctor or cardiologist. Don’t ignore shortness of breath or fainting or near-fainting episodes. I was put off several times before I insisted (in a very diplomatic way) that something was wrong.

If you have chest pain that does not stop or keeps coming back, go to A&E or ER. Don’t risk heart damage.

Good luck.

Nancy in West Virginia

[Lind8 in reply to ndstephens49]

Hi Nancy, thank you for your reply. You have been through a lot with operations too, that must of been quite scary for you. Are you on blood thinners & is your INR unstable? I’m thinking this might be contributing to my chest pains?

The cardiologist I saw in A&E was asking about any previous scans but I couldn’t remember what I had had. I know I had a routine scan at diagnosis but was only 20 at the time ( I’m 50 now ) so a long time ago now, although i remember it did show I had leaky heart valves.

I have left my chest pains for too long now, they did tell me off in hospital for not going straight to A&E. I am going to push to get to bottom of it now. I have stupidly thought, as the pain goes again it can’t be that serious, but after all you have been through this shows it isn’t always the case.

I’m glad you are finally getting treatment & seeing the right consultants. I hope you are feeling a lot better now & can walk without being so breathless. Take care x

[ndstephens49 in reply to Lind8]

Yes, Lind8, I have been on Coumadin since 1996. But only since last year has my target INR been 3-4. My INR is unstable at times. When my INR gets below 2.5, I tend to have TIA’s-slurred speech, confusion.

There are times when it can go really low or high for no apparent reason. So I check it every day or two and adjust as needed.

The medical establishment seems to ignore our concerns unless a cause shows up in the first test they do. LISTEN to that little voice in your head if it says something is wrong and try to get an answer. It is hard to deal with medical types.

Good luck!

Nancy in West Virginia

[Wittycjt]

Look at Hidden s post of prof Hughes blog it may help you

[Lind8 in reply to Wittycjt]

Thank you , perfect timing for his blog... plus I have a very similar history to patient, multiple miscarriages, TIAs & stroke..

I will take this to hospital with me next week. Just wish I could maintain my INR levels better then the TIAs & Angina would probably disappear too.

Thanks again for all your help & support