Here we go again 🙄

[Helly75]

I've spent the last couple of days in hospital again ,partly caused by the storm. I've had ongoing episodes of chest pain for what feels like forever ,constant visits to a&e to the point that I want to wear a balaclava to avoid being recognised. Anyway, cardiologist came to see me & thinks I have chronic pericarditis and has prescribed an 8 week course of steroids . I'm a bit terrified but when am I not ,so I will see if the steroids help me any . My thyroid has also caused some havoc & I have a new diagnosis of hashimotos. Now whoever has my voodoo doll could you please take a few days off 😅

[Knavesmire27]

Bless you. Wishing you all the best. Stay strong and don't lose that sense of humor 😊

[Helly75 in reply to Knavesmire27]

Thanks, I've told my husband I'm going to wake up like the incredible hulk in the morning & I think he believed me 🤣

[Milkfairy Heart Star]

I am so sorry you ard back in hospital.

My coronary vasospasms get worse during storms when the air pressure drops.

I ended up in hospital after storm Cairán in November 2023.

Hashimotos is associated with microvascular angina maybe something to ask your cardiology to consider.

I hope you feel better soon.

[Helly75 in reply to Milkfairy]

Thanks milkfairy , it's been a nightmare . A private cardiologist diagnosed me with micro vascular angina ( without the correct testing) local cardiologists didn't agree so I was left to go through what was to come & now I don't have a cardiologist at all which I'm very cross about

[Milkfairy Heart Star in reply to Helly75]

I am not surprised you are not happy about having a Cardiologist. Have you raised this a concern with the hospital?

Here in England it's possible to contact the Patient Advisory Liaison Service.

I hope you are able to access the care you need soon.

Living with uncertainty is stressful 😫

[Helly75 in reply to Milkfairy]

I'm going to have to say something but I feel in a very precarious position, if I speak up the lack of care will get worse but doing nothing isn't helping either . Me attending a&e once a month in considerable pain isn't right ,it's embarrassing and exhausting for me ,it's no way to live . All I want is some stability, to be able to manage at home by myself and have some quality of life ,I don't think that's unreasonable

[Milkfairy Heart Star in reply to Helly75]

Absolutely not!I have the advantage of living in London. I was able to find a specialist who understood microvascular and vasospastic angina.

I had a functional angiogram using acetylcholine which confirmed my diagnosis of vasospastic angina.

Not being believed and being refused pain relief has had a lasting affect.

Are you able to ask for a second opinion?

[Helly75 in reply to Milkfairy]

I really think I'm going to have to ask for another option, I just cannot take anymore ,the pain is so bad at times & if I go to hospital to find that troponin & ecg is fine then they just say I'm anxious or come up with something silly ,you wouldn't believe the gaslighting I've put up with ,I could write a book . They won't even consider taking another look ,I was lucky to get an echo yesterday but that's not the right test

[Milkfairy Heart Star in reply to Helly75]

Sadly, I could believe the gaslighting. I am sorry you have had this experience too.

I was told, incorrectly when I was admitted with a suspected heart attack in 2012, that I couldn't have angina or a heart attack.

I was prescribed beta blockers for my ' anxiety ' before my diagnosis of vasospastic angina was confirmed.

I ended up in hospital with unstable angina.

I later found out that beta blockers can make coronary vasospasms worse.

Many people with microvascular and vasospastic angina have normal ECGs or ischaemic changes ignored.

I do have dynamic ECG changes, however these have only recently been recognised and acknowledged .

It's well known women can have problems accessing cardiology care.

We're told were anxious or having a panic attack.

The British Cardiovascular Society published a consensus document last year about tthis issue last year.

britishcardiovascularsociet...

[Craig53]

Hi id like tips on how to keep your heart healthy

[janeykinsjt81 in reply to Craig53]

Don't get into a relationship😊

[Bluelobby in reply to janeykinsjt81]

😂

[wischo in reply to janeykinsjt81]

😀

[Stent2024]

wishing you better soon x

[Helly75 in reply to Stent2024]

Thank you

[Plum53]

Hi Helly 75, even though you’re going through these health problems you still made me smile. I really hope you get to feel better soon. X

[Helly75 in reply to Plum53]

I'm glad I made you smile 😃 I have to hold onto my sense of humour & usually can find it in the darkest of times between the uncontrollable sobbing! I'm afraid to go outside at this point incase I slip on a banana skin & break my legs x

[Plum53 in reply to Helly75]

Thank you for your reply. Life throws all sorts in our way but we have to do our best to cope with it all. Your take care xx

[Headache1001]

Well that’s a bit rubbish! Maintain a sense of humour and hope you feel better soon.

[Helly75 in reply to Headache1001]

I don't think they know what they are doing at this point , I have to hold on to some humour it's all I've got left at this point 😅

[janeykinsjt81]

How awful for you. If it is any help I got extremely stressed last week and I started with chest pains and I thought is it another HA ( I've had 2+5 stents) I don't know if you can get a recording or have Alexa but I sat very quietly and listened to meditation bowls whilst breathing in very slowly for about 15 minutes. Repeated when it started again. My pain has now gone! I was so close to calling for an ambulance but I realise we cannot help stress at times but I hope you try it. Jane. PS Someone stuck pins in a dolly with me too lol!

[Helly75 in reply to janeykinsjt81]

The stress has been awful & I feel like it will be the end of me before anything else will ,this has been going on for the best part of 7 years & without conclusion which is very hard to take ,the not knowing & almost waiting for something to happen again x

[janeykinsjt81 in reply to Helly75]

I will tell you what I did. I found the best Cardiac consultant at my local hospital. I booked a Private appt. I went to see him with my concerns and that I have had enough. I cannot live a normal life! Basically he said I needed further surgery but it would be very expensive. Do you have the money? I said not really I have some savings but it would leave me pretty broke. He then moves me to the top.of his NHS waiting list and bkd me in for 4 weeks time! There was a 19 week waiting list just to see a consultant on the NHS! Unfortunately for me I had another HA 1 week before and had my surgery but he noticed it was me that had bern admitted andcess well looked after. Worth a try. If you need to chat msg me 😊

[Scho1]

sorry to hear you have pericarditis. I too have suffered on and off with this for over 19years. Cardiologists rarely now prescribe steroids as research has shown it can cause recurring flares on tapering . The best treatment is colchicine and anti inflammatory meds such as celecoxib. Rest is key for at least 6 weeks and keeping your heart rate below 100bpm.

I must point out that most people recover fully from peri but some of us go on to become chronic. Some also go on to need pericardiectomy.

There is a UK, Eire and Channel Islands support group you might like to join.

[Helly75 in reply to Scho1]

I've had myocarditis 3 times now & I'm adamant that's not coincidence but they really don't care to investigate that so I'm powerless. It was only weeks before the near fatal heart attack & cardiac arrest that they'd said I had myo/ pericarditis, I've had colchicine & celecoxib multiple times and those treatments failed ,I'm not hopeful for steroids either if I'm honest ,I feel I'm just being brushed off 😢

[Scho1 in reply to Helly75]

Have they done a cardiac MRI or CT angiogram? So many doctors brush it off. There is a research group of top professors in rheumatology/immunology and cardiology in this country, Europe and America doing studies into recurrent pericarditis as it’s not fully understood by many doctors unfortunately as many of us in the support groups have found.

[Helly75 in reply to Scho1]

They had done the cardiac mri at the time & the angiogram, that was last may ,never been repeated ,that will not happen within my trust ,I will just be left again & told I'm anxious

[Scho1 in reply to Helly75]

have they tried you with Anakinra?

[Carriefarm]

I’m sorry to hear your having so many issues. I hope your meds help and you get some relief soon. Best wishes.

[Headache1001]

I’m feeling for you. It’s horrible not having any answers or consistent care with a plan. Hang in there!

[Partner20]

Sorry to hear about your current issues. Can't comment on those, but I can offer a little insight into Hashimoto's. This is actually the cause of around 90% of hypothyroid cases, meaning that the condition is autoimmune. Having Hashimoto's makes no difference to the treatment of your hypothyroidism, so no changes are necessary there.Once you have one autoimmune condition you are more likely to have another, so it is something to be aware of. I would imagine that your recent illness has contributed greatly to the changing of your thyroid levels. TSH can rise with any illness, infection or inflammation, and the same things can cause a Hashimoto's flare, making hypothyroid symptoms worse. Hopefully everything will settle down together. Wishing you well.

[Helly75 in reply to Partner20]

Thank you for the info ! I had no idea the thyroid could cause such havoc but the symptoms have taken the legs from under me , I was hyper to start with then very quickly went into hypo, but was told i was just anxious, that old chestnut ! But I knew it wasn't that ,convincing drs is always a problem 🙄

[Partner20 in reply to Helly75]

Yes, they love pinning everything on anxiety, don't they.🙁Hashimoto's can often push thyroid levels into hyperactive levels when in a flare, so it us often hard to determine the levels to medicate to until the flare subsides. It does not help when doctors dismiss the idea of an antibody flare and put it down to imagination!

As antibodies can increase when our bodies are trying to cope with infections, stress and suchlike, it is no wonder that things get on top of us. I hope things settle down for you soon and you can begin to see a light at the end of the tunnel!

[Helly75 in reply to Partner20]

Having to wait 9 months to see endo isn't helpful either but reading posts on the thyroid forum I'm getting the impression that they aren't particularly helpful either & this is going to either be another fight or I will have to work it out myself, thank-you

[Partner20 in reply to Helly75]

It's true that a lot of endos are unhelpful and dismissive, but that seems true of many consultants now, unfortunately. Yes, we certainly need to advocate for ourselves.I would recommend checking out Rachel Hill, The Invisible Hypothyroidism, for helpful and down-to-earth advice. Personally I avoid the HU thyroid site!

[Helly75 in reply to Partner20]

I will have a look thanks, I did join the site & was a bit bamboozled/ blinded by science so to speak , it's a wee bit frosty too I found !

[Partner20 in reply to Helly75]

"Frosty", I love it! 🤣 What a good description. I found several people there dogmatic and on occasion very unfriendly. It's their way or no way, it seems.Rachel Hill, a lovely girl, used to run her own FB group which became so large and popular that she had to archive it as her family and her own health had to take precedence. Her books and online info are brilliant, though. Helpful and friendly, too! Wishing you all the best. 🙂

[Deb618]

May God speed you to recovery …

[Helly75 in reply to Deb618]

Thank you so much for this xxx

[Deb618 in reply to Helly75]

I know what it is to suffer Helly75 . Prayers and pray for me please

[nilmonisikdar40]

Hi Helly, Firstly thanks for letting us know. In my view , such an interesting story of your problems because your condition is not so common. I must compliment you cardiologist for diagnosing that condition. I have heard about acute pericarditis but not chronic pericarditis because it's so rare. I believe it's autoimmune condition associated with thyroid problem, rheumatoid arthritis and others. Has the steroids prescribed, kicked off.

[Helly75 in reply to nilmonisikdar40]

I've had to go back to the hospital today to collect the steroids ,I'm a bit scared of them actually & I think the cardiologist is not correct & clutching at straws but what would I know 🥹

[SuddenShock]

Sorry to hear your story. Can I just check, do you think that all we need to do is find out who has the dolls and we will be alright? I had a good look around, there are nobodys dolls in my house (I even checked the fridge), I hope we are all able to keep looking for many years to come!

[Helly75 in reply to SuddenShock]

God help whoever has it if I find them though I'm probably only fit to give them a dirty look 🤣 ,thank you ,just another thing for me to get over

[TasteLessFood4Life]

hello -- sorry to hear and I can totally relate to. Sometimes it is really hard to know whether it is anxiety induced or heart related. If it gets better when you are chilled and not thinking about - maybe it is the mind in overdrive? I have many episodes of chest pains, where I was thinking should I go to a&e or ride it out? My criteria - if it gets worse - go, if it improves or goes away - thn maybe it is anxiety.

Good luck - dont over-think it - if something doesnt feel right, better safe than sorry and go to a&e.

[Helly75 in reply to TasteLessFood4Life]

I just can't judge anymore & find it hard to know where to draw the line and seek help but I'm also a bit cross at not getting follow up with a cardiologist given such significant history, I'm not anxious I am depressed though and it's no wonder 😅

[Smitty1956]

Hi, Helly75,

I am sorry that you have been going through some very tough things. Hopefully, the steroids will help you to feel stronger and to heal.

On the plus side, I see hints of a well-developed sense of humor—and laughter can be a very strong medicine. I know that it’s hard, but try to encourage your ability to laugh because that will help your spirits lift a little.

January has felt like it’s been about three years long, but this too shall eventually pass.

Another plus is that you now have some idea/diagnosis of what is going on with your health. That should give some hope for treatment. Hang in there—each day is a chance to begin to feel better and stronger. Focus on one step at a time and stay strong! ❤️

Wishing you hope and better days! 🙏

[Helly75 in reply to Smitty1956]

Thank you for your kind message , things have been rough for sure ! I will always look for a bit of comedy in the darkest of times ,the old me is still in there somewhere trying to get out of this place I've found myself in. I can honestly say I really don't know what I'd have done without the people on this forum because you are the only people who can understand what I'm going through properly & I have no real friends anymore also 🤣🤣

[Proteus333]

Hello ,just seen your post you have certainly have had a time of let's hope the steroids work they worked for me...take care of yourself Kind regards

John

[Helly75 in reply to Proteus333]

Thank you John, can I ask if you had many side effects ? I'm on my 2nd dose of many and my tummy is kicking up a fuss already ! I have to start at 40 mg and taper by 5mg a week 🤢