I became breathless when I walked up hill over the last couple of years, so eventually went to the GP last November 21 and he found I have Hyperthyroidism which appears to have given me Atrial fibbulation, he gave me Beta Blockers and Blood Thinners and referred me to an Endocrinologist, who I have only recently seen, nearly 6 months later.
When I was leaving my GP appointment I heard him mention something about Heart Failure but presumed he was saying the medication he was giving me would prevent it.
Since then I've seen online that the breathlessness is more likely to be Heart Failure and at the best I could live for 5 years.
I'm a bit shocked and stressed at what I think I've discovered and wonder if anyone on here has Heart Failure and can give me some advise?
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crisathome
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I doubt that your specialist appointment would be delayed by six months if you had a life ending diagnosis.Golden rule for us hearties is that the only online advice should be NHS or BHF. Please don’t try reading Dr Google.
The internet is so often what one person thinks and one person believes. The other fifty million of us would rather listen to the experts.
In 2020 my breathlessness etc became serious and all local NHS cardiology departments were closed. But my consultant was on the phone within 24 hours to tell me the diagnosis and severity.
I got the necessary treatment and here I am two years later enjoying a sunny afternoon listening to the cricket. I am 74.
Welcome to the BHF site, there are lots of people here who have been through the hearties grindstone and will share their knowledge
Hi Blackcat, I do think that I've been lost in the system somehow and I have been left without treatment for the Hyperthyroidism which my GP says caused the Atrial fibbulation, which has now given me Heart Failure, I think. As I was leaving the original GP appointment he was saying something about Hf which I thought he was saying the medication would protect me from, I now think he was saying that I already have it.
At least the Endo said he was referred me to Cardiology, although I've heard nothing yet and I'm probably on some months long waiting list again.
The Nhs has let me down I think .......
Little dog is Dolly, she's the best thing and keeps me happy and she makes me go walks. 😊
AFib itself can be the direct cause of breathlessness. If you get your thyroid managed, the AFib may get managed as well. The beta blocker will help keep your heartrate down during AFib episodes and the anticoagulant will help with stroke prevention, which is needed because AFib gives a higher chance of stroke.
Regarding the HF question, both AFib and HF can be the contributing cause of each other and vice versa. In order to properly diagnose, an Echocardiogram and cardiac blood work should be done. If there is some HF, there are many meds and therapies to assist with this condition now to make it more manageable.
Hi Bob, thanks for replying. Your post was what I needed to hear.I've told my children and older grandchildren about the Hyperthyroidism and the Atrial fibrillation but I don't want them to worry, so don't discuss how I feel and make light of it all but I feel very scared and alone.
Hi crisathome, my Mum was getting increasingly breathless and went to the GP thinking she had a chest infection. She was immediately rushed to hospital with AF and heart failure. Like you, I consulted Dr Google and was very shocked and upset when reading she might have another 5 years left following the heart failure diagnosis- from memory I believe it was in the BHF literature, so what I considered to be a trusted source.
Anyway, she was put on meds and 10 years on, I’m delighted to say that she is still going strong, as bright as a button and is now 87. She is still keeping me in order, too😄 So please don’t despair, if it transpires you do have heart failure.
Thanks so much for your reply TC and your experience with your Mum and Af and heart failure, when I read that 1 to 5 years maximum I was so shocked and upset like you.Your reply is just what I needed to hear and I feel much better about it all now.
Please try not to worry. HF is a terrible term which just means your heart isn’t pumping effectively. You can live for many years post diagnosis.HF be improved with medication ( not cured) and has varying degrees of severity. Have a look at pumpingmarvellous.org for some real life help and examples. Best Wishes
Why isn't your GP treating your thyroid problem? Most people with thyroid problems just get treated by their GP, you must be feeling dreadful if he's left you and hyperthyroidism is one if the first things they check for if you go to A and E with afib . I have had hypothyroidism for 20 years, always been treated by my GP, if you take too much medication and it flips to hyper, it feels awful.
Hi Lupaal, apparently the GP's have been instructed to just refer urgently to the hospital and they will be seen within 2 weeks but with Covid backlogs this hasn't worked. I was so desperate at one point I rang my Doctor and told him I was going to go Private and he emailed Endo but when I rang I was still told I was on the waiting list.
It's all to do with Covid really, the Nhs seems to be still frozen in terror, when everyone else has moved on.
Hi crisathome, first thing you learn when you join this forum, do not read Dr Google. He should be struck off! Get to see the specialist if you can, they will advise you of your condition and how serious it is. All the new drugs available will help your condition. When I was first diagnosed I did the same with Dr Google, I ended up so anxious that I had to have 3 months with a Phycologist. Sent me crackers. I’m now back waking everyday at least 5 k play golf 3 times a week, I do use a buggy now, and go to the gym twice per week. When my wife asked the consultant about longevity his answer was was well it might take a year off his life, but no one can tell you. More than likely something else will get him. So ignore Dr Google and consult the consultant!
Thanks for your post, it has made me feel much better. I know what you mean about Dr Google and it has made my anxiety go through the roof.Do you know! I was considering asking to be referred for CBT as I was thinking I just can't cope with all this but after reading these kind, sensible and reassuring posts, I feel so much better.
I will calm down and wait for my Cardio appointment.
I was diagnosed with HF in 2016. Ejection Fraction of 17. Now 43. Still here! So please don’t worry. I’m you will as it’s all quite strange when you get the diagnosis. Take your medication, eat a healthy diet and enjoy your life. Fiona
Thanks Fiona, I'm feeling much better now, after reading all these replies.My anxiety went through the roof because I Googled and found some frightening stuff.
I can only endorse what everyone else said, like you I thought the same when diagnosed.
Year plus on and whilst not cured I am managed and really enjoy life, can't do everything I did before, but taking my time I can still do a lot that I thought I couldn't do. Now doing up to 3.7 m.p.h on the treadmill with a 5% incline.
I wish you well and try and think positive going forward.
Thanks for replying, I feel so relieved now after reading all the replies.Mr Google told me I'd most probably be dead by next year and at the very best, might last 5......
Have you looked at the Thyroid Forum on HealthUnlocked? It's quite a large forum with over 120K members.........clearly thyroid treatment/management isn't always as it should be.
I am Hypo, but there are many experienced Hyper's who give their time to help answer questions.
Bits & pices I have picked up:-
The usual 1st line treatments for Hyper are propranalol & carbimazole. In the majority of cases bloods (TSH, FT4, FT3) should initially be tested every 6 weeks until on a stable dose. The type of antibodies tested are important for identifying whether you have auto-immune Hyper (Graves)........I think TRAb & TSI for Graves & these are usually requested by an Endo 'cos GP's are not allowed. Graves can go into remission. You should be aware that quite a lot of people have a transient hyper phase before becomming permanently hypo, which isn't always picked up, and is another important reason for testing which antibodies you may have because you can become over-medicated quite quickly.
I strongly recommend that you ask for copies of your blood test results, and then ask your GP Surgery for online access (usually entails filling in a simple form and providing ID at reception) and then post on the thyroid forum. Or, at least go and have a read of posts with Hyper or Graves in the title.
Hi nellie, I've had a look at the Thyroid Forum and posted on there.Thanks for all your information, I'll read through again and I think I need lessons in Throid 😂 as there is so much I don't understand.
I'm going to get the Online access at my GP, as that has been recommend a couple of times.
Sorry late to the party as usual, I got a shock as well back in 2019 when I was hospitalised and got the nice big red book from NHS/bhf that scared the bejesus out of me until I realised that the mortality rate Does get skewed by HF diagnosis near end of life in elderly folk. It also doesn't help that HF research is still within its relevent infancy and that newer drugs out in the last 5 years have only started to affect outcomes that can improve like mine
Push and harass your Dr/referral with cardiology, this is your life and as much as we would like to think the link between primary and local NHS works well but it's falibale like all systems run by humans.. they have been through hell in the last few years but this is your health and untimatley you need to take charge
Thanks for your reply, it helps that you've explained how the mortality rates can be skewed. Bit of a shock to read on Bhf that you could only have a year to live and at the most 5, it also said that there had been no advancement in medication, so literally 'that was it', there was no hope.
yeah i was flicking though the book (not much else to do when in RBHT and waiting to get better/undergo procedures) and it started out with things you have to be careful about, to then how sex will have to be different, to then planning your will and changing retirement strategy (as in not wasting time on one), to changes for your carer to be aware of.
i will say that i am in my early 40's and as i did recover a lot of items were not applicable to me, i had better advice from the cardiac nurses on what to be sensible about, like warming up properly before exercise and other activities
tTey do have to encompass everyone in this handbook but it was very daunting, it was almost like being in a satirical medial drama with the book re-titled as 'so, your life is over!'
medication has definitely improved the last 3-4 years to the extent that i have recovered well and undertaking as many studies as they ask me to hoping i can help pin point how my drug sacubitril/valsartan, has helped me but not others.
Hi Crisathome, what medications are you on? I too have sev breathlessness almost all the time. Heart failure is really painful. Living with breathlessness is agony.
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