Heart Attack at 38

[DownAndDesperate]

Hi,

I first posted on the thyroid board but was sent here to check with the knowledgeable people here.

At the end of January I had a heart attack. The doctors said it was due to taking T3 for my thyroid but I’ve read a lot of conflicting information as to whether T3 would cause this or not and the thyroid board people suggest that it wouldn’t. The official diagnosis I was sent was T2MI secondary to thyrotoxicosis. I was also unsure because they didn’t seem particularly thorough or bothered. They didn’t give me a diagnosis to my face, they didn’t give me results to tests, they’ve given me no follow up (except a thyroid blood test after 4 weeks), no cardiac rehab, no advice and the only medication they’ve added is a statin.

I was diagnosed with APS (specifically the tests came back positive for the lupus anticoagulant - I think antibodies) in about 2014 because my family have a strong history of blood clots. Doctors at A&E and once I was admitted were shocked I wasn’t being treated for it but as I’m sure you’re aware, they don’t treat until after an event. Heart attack is an event though - so shouldn’t I be on blood thinners now? Or because they don’t believe it was due to a blood clot I don’t need to be?

I’m not sure what I’m asking as such. Any advice or insight is welcome. I would like to know if it could have been caused by APS without a blood clot showing on the CT? I didn’t go to A&E until about 20ish hours after the heart attack and was feeling fine at that point. I’ve developed pain in my chest about 3ish days after leaving hospital from the morning after the heart attack till then I had no chest pain and felt normal (for me).

I was on T3 for about 18 months with no issues. Lots of symptoms disappeared or improved. I’ve had palpitations for years and if anything I think the T3 had improved them as I used to not be able to shower without wanting to pass out and vomit but the T3 took that away. It’s back now I’ve been off T3.

Sorry for the long post, I’m not sure what’s relevant. Thanks for any help and getting this far.

[lupus-support1 Administrator]

I am sorry to read your story. IMHO, you need an emergency referral to a cardiologist. Go to your GP for a referral immediately.

Based on what you wrote, have been poorly managed by these doctors.

With good wishes,

Ros

[DownAndDesperate in reply to lupus-support1]

Thanks for your reply.

I put in questions to PALS over a month ago and they have yet to get back to me. I sent another email to both the main email address and the address of the person that was supposed to be supporting me about three days ago and they haven’t gotten back to that either. My email before those to the person supporting me was also ignored so I’m going to put a formal complaint in which my friend suggested would get me a fast appointment.

I’m kind of dubious about how much good seeing a cardiologist would do given I saw two in hospital and they haven’t exactly been helpful.

I had a 24 hour ECG mid feb but that was unrelated because I asked my endocrinologist about possibly having POTS but I don’t have the results of that yet either.

[lupus-support1 Administrator in reply to DownAndDesperate]

I doubt you saw a consultant cardiologist. You probably saw junior doctors. In any event, you were not followed up and referred to a cardiology unit. As you said, they were useless.

A ECG is insufficient. You need further tests, such as a stress test and a wide range of bloodwork, specifically organised by a consultant.

Therefore, please see your GP and insist you see a consultant cardiologist.

[DownAndDesperate in reply to lupus-support1]

They were definitely consultants as they were introduced as such and I was on the acute cardiac ward for three days.

But I will ask my GP, thank you.

Do you think it may have been APS related though and should I be pushing for treatment for APS?

[lupus-support1 Administrator in reply to DownAndDesperate]

I support your asking for a second opinion by seeing another cardiologist, preferably one at a teaching hospital because they are the best.

I also agree you need to pursue APS, aka “sticky blood” also known as Hughes Syndrome after Dr Graham RV Hughes, who first recognised it. If your blood is “sticky” or too thick, it can cause a problem delivering oxygen to the heart, for example, hence blood thinners ranging from baby aspirin to warfarin, heparin and other modern drugs. Similarly, it can cause DVTs which is why blood thinners are prescribed.

Have a chat with your GP as soon as possible to get the ball rolling!

Good luck and keep us posted!

Ros

[DownAndDesperate in reply to lupus-support1]

Thanks. I was actually at a teaching hospital - it’s my local hospital.

I’ve already been diagnosed with APS but they refused to treat until I’ve had ‘an event’.

I was given blood thinners in hospital but as soon as the echo was ok they took me off then and sent me home. The only medication they gave me was a statin.

[KellyInTexas Administrator in reply to DownAndDesperate]

Awful. ( and welcome).

Two thoughts: ( might be missed by jr doctors or cardiologist not terribly familiar with APS)

Something that can cause heart attacks ( you must ask someone who knows more about this, as it has to do with micro clotting as Vaso spasms ) is INOCA and MINOCA.

Also, non infections endo carditis , also known as Liebman -Sacks . Its vegetations on the valves, can be seen in APS . Usually caught with echocardiogram/ specialized “cardiac Doppler ultrasound” of the valves/ heart, chambers, mechanics .

[MaryF Administrator]

I agree with lupus-support1 you have been badly managed, unfortunately the LA test makes some who have not bothered, medically to keep up with advances in medicine, think this is Lupus, when it is in fact Hughes Syndrome/APS - Antiphospholipid Syndrome, if you tell me which area you live in I can try and find the consultants for your GP to refer you to, as you don't want another, 'wrong direction from the doctor' MaryF

[DownAndDesperate in reply to MaryF]

Hi. Thanks for the info. No, I was diagnosed with APS not Lupus. But the haematologist told me that it’s NHS policy not to treat APS until I’ve had either a heart attack, stroke, blood clot, late miscarriage, still birth or three miscarriages. I was told she’d review if I got pregnant and when I did my OB prescribed fragmin and asked the haematologist to consult. Even at that point the haematologist was against giving me the fragmin but I’d already been on it for a while so she left me on it (mostly because the OB was for it).

I was on blood thinners once I was diagnosed with the heart attack but once the echo was deemed clear they took me off them and haven’t even given me aspirin.

I’m in Seaforth, Merseyside. Thanks 😊 I’ve never been given the option to choose where to go though.

[MaryF Administrator in reply to DownAndDesperate]

You will need to very urgently see your GP and take your most articulate trusted friend, neighbour, colleague or relative with you, for calm back up. Write out your symptoms in bullet points and your medical history in bullet points, and medication in bullet points, this will help you get straight to it. Ask for an urgent referral and explain that you have been in touch with a forum that is linked to a charity, started by Professor Graham Hughes. You can print this list out also, to show them the choice for referrals. It will not only help you, it will also help your GP practice.

Professor Ian Bruce

Rheumatology Clinical Lead

The Kellgren Centre of Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

____________________________________________-

Mr Andrew Drakeley

Consultant Obstetrics and Gynaecology

Department of Obstetrics and Gynaecology

Liverpool Women's Hospital

Crown Street, Liverpool

Merseyside L8 7SS

Telephone: [phone]

_________________________________________________

Professor Charles Hay

Consultant Haematologist

Department of Haematology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

____________________________________________________

Dr Rachel Gorodkin

Consultant Rheumatologist

Department of Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

_______________________________________________________

Professor Charles Hay

Consultant Haematologist

Department of Haematology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

_________________________________________________

Dr Sean Hughes

Consultant in Obstetrics and Gynaecology

Royal Preston Hospital

Sharoe Green Lane, Fulwood

Preston, Lancashire PR2 9HT

Telephone: [phone]

____________________________________________________

Dr Eva Palkonyai

Consultant Rheumatologist

Department of Rheumatology

Royal Lancaster Infirmary

Ashton Road, Lancaster

Lancashire LA1 4RP

Telephone: [phone]

___________________________________________

Dr Ben Parker

Consultant Rheumatologist

The Kellgren Centre for Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

______________________________________________________-

Dr Linda Watkins

Consultant Obstetrics and Gynaecology

Department of Obstetrics and Gynaecology

Liverpool Women's Hospital

Crown Street, Liverpool

Merseyside L8 7SS

Telephone: [phone]

_______________________________________________

Dr Andrew Will

Clinical Director

Department of Paediatric Hematology

Royal Manchester Children's Hospital

Oxford Road, Manchester M13 9WL

Telephone: [phone]

_________________________________________________-

Private Specialists

Dr Roger Bucknall

Consultant Physician and Rheumatologist

Nuffield Health Grosvenor Hospital

Wrexham Road

Chester CH4 7QP

Telephone: [phone]

_____________________________________________

Dr Ben Parker

Consultant Rheumatologist

Spire Manchester Hospital

170 Barlow Moor Road

Manchester M20 2AF

Telephone: [phone]

MaryF

[DownAndDesperate in reply to MaryF]

Thanks for that. How come not all of them are haematologists? I doubt they’ll make an urgent referral. It’s also impossible to get doctors appointments at all at the moment.

[Star13]

Sorry to hear about your problems. Sounds like they have been once again given ignorant thyroid info as T3 is actually protective for the heart! What was your T3 dose as a matter of interest.

I’d ask to be referred to a haematologist as well as a cardiologist as I think both should be incorporated into your care.

This article may be of interest ncbi.nlm.nih.gov/pmc/articl...

From what I can see a T2MI isn’t necessarily caused by clotting perse but many of us have what’s known as syndrome X which can send medics off on a tangent!! You might want to look that up. Prof Hughes used to talk about how that used to get confused with things and I have been carted off to hospital twice with suspected MI only for them to put it down to the above once they look it up🤣

[Star13 in reply to Star13]

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

[DownAndDesperate in reply to Star13]

I was on 50mcg. I saw a haematologist to diagnose me with the APS but after that I was discharged so there’s no ongoing care. I’ll ask about being referred again so they can review the situation.

They originally thought it might be a PE given then APS and my troponin levels were high which could have been caused by stress on the heart from a PE but the CT was clear.

That’s interesting - I haven’t heard of that. Can I ask what your symptoms were? Mine were like heart attack 101. Thanks for the articles, I’ll take a look.

[KellyInTexas Administrator in reply to Star13]

my.clevelandclinic.org/podc...

They are making a lot of headway on understanding this now, Star13

England has a specialist as well, and if I’m not mistaken it’s Professor Colin Berry. ( I’m typing this without fact checking myself…)

I’ve also been hospitalized with this, and cardiac markers were up. I am prescribed nitro spray and sublingual tabs ( lowest dose on both.)

I have absolutely zero obstructive coronary artery disease.

DownAndDesperate , I tagged you in for a read of dropped link at the top

[Star13 in reply to KellyInTexas]

Thanks for the link. I’m not allowed the sprays or tablets because of migraine issues.

[KellyInTexas Administrator in reply to Star13]

I am told to try to break a tab in half or less- I suffer migraines as well.

I also have POTS, so blood pressure drop is also issue.

We must always ask our own specialists first, find out what the diagnosis is, if Vado spasms are also involved, and what kind of specialist can address the specific needs of that particular patient.

[Star13]

I had chest pain, breathlessness, heart racing and irregular beats and dizziness. The ecg was also irregular.

I think you should go back to the haematologist so they can review again until the cardiologist looks again.

[DownAndDesperate in reply to Star13]

I’m sorry to hear about your symptoms.

Judging by other referrals I’ve had it’ll probably take at least a year to get an appointment but I’ll give it a go