Beginning To Despair.....

[Channeal]

Just an update on my problems with low heart rate etc........

My long quest to try to discover why for several years now I have been waking up around 5 or 6 o'clock every morning feeling absolutely terrible continues on. My mobility has also got really very bad and it is becoming more and more difficult to have a shower because I end up having to stop half way as I feel too unwell.

Along my journey, I have spoken to several doctors about why I feel so bad every morning. The problem started slowly and has got gradually worse throughout the years, but has always felt that something serious is happening, though it is difficult to really describe how I feel. Through the years, doctors have suggested various possibilities: one thought I needed a third blood pressure tablet, another thought it was because my thyroid levels were borderline and put me on thyroxine. Nobody ever did what to me always seemed the logical thing to do and try to find out exactly what is happening in my sleep to make me awake feeling so bad. The doctor who really annoyed me though was the one last year who had never met me before, but felt qualified to made a judgement that the problem was caused by stress and that what I needed was counselling. She refused to listen when I told her that although my life is pretty stressful these days for a number of reasons, when the problem first started I was not stressed out at all. Tbh, I feel pretty let down by every doctor I have spoken to!

A while ago I decided to try to be more proactive in my quest to find out what is causing the problem and - spurred on by people responding to my previous posts on here - I discovered for myself that my heart rate is pretty low when I first wake up (currently around the 43 region) and may, of course, quite possibly go even lower during the night. The doctor I saw halved the dose of bisoprolol I am on to 1.25 but this does not really seem to have improved things, so I am now awaiting an appointment to see a cardiologist.

I am feeling really depressed. I feel so unwell that even the smallest outing is hard as just going from the car to, sat, a cafe feels a bit like climbing a mountain. In addition to all this, I have a husband who has had myeloma for six years and is on constant chemo. As he is immunocompromised we hardly ever go out and have no real life outside the home. We also have a daughter of 43 who lives with us and who was diagnosed with BPD a couple of years ago. She has taken overdoses a few times this year. It all gets a bit hard to take at times. (Really sorry to complain as I know you all have a lot to put up with)

What is really getting me down as far as my own health is concerned is the fact that people tell me I will have to wait ages to see a cardiologist, even though the doctor said she was putting it through as urgent. I am 73 now and feeling I have already wasted enough of my old age just not being able to get answers and I am now wondering if I will just die without ever getting any.

Thanks for letting me vent,

Chris.

PS I forgot to mention again that in 2019 I had an abnormal ecg as part of pre-op checks for a hernia operation. I am posting here the letter sent by the doctor who performed an angiogram on the same day as my operation. I did post the letter before, but think it probably got lost amongst various conversations going on under my original post.

1st February 2019

This 67 year old lady had been awaiting elective hernia repair but has been declined by the anaesthetist for a second time due to an abnormal ECG with signigicent T wave inversion. She has a background of hypertension and hypercholesterolaemia and I note a previous echocardiogram in December 2018 showing preserved LV function. Due to her being declined again for surgery, we proceeded to perform coronary angiography today as an assessment of peri operative risk.

Findings were as follows:

Left main stem - this was normal.

Left anterior descending artery - there was minor plaque but it was unobstructed.

Left circumflex artery - there was a minor plaque but this was also unobstructed.

Left circumflex artery - this was dominant and normal artery.

Left ventricular cineangiogram - this showed preserved LV systolic function with evidence of left ventricular hypertrophy

This lady has only minor plaque disease and essentially unobstructed coronary arteries. She also has preserved LV function on cineangiogram today.

It is likely that the abnormal ECG is due to underlying hypertension with left ventricular hypertrophy.

She should remain on medical therapy for her minor coronary artery disease. I therefore do recommend that she continues on Aspirin and a statin in the long term. Blood pressure, cholesterol and diabetes checks should be done regularly by the GP.......

(He then recommend that the operation could go ahead).

We do not need to see her again at this time from a cardiology perspective and I am discharging her back to your care.

[scentedgardener]

I can't really advise but will tell you a bit of my story as there are similarities, not least in the attitude of the doctors.About 15 years ago I had an incidental finding of sub-clinical hyperthyroidism. Through the years the only 'help' I've had is sporadic blood tests apart from one locum who advised it should be treated as even at a sub-clinical level it could lead to heart problems.

When I first saw a cardiologist I had to take a list of pre-existing conditions so I obviously incuded it, but in his letter he referred to it as HYPOthyroidism. I did write to correct that but was ignored.

As recently as June I was refused a referral to an endocrinologist. I found out quite by accident that a lot of the symptoms that make my life a misery could be attributed to this overactive thyroid. I returned to the attack, had another set of bloods in October and now there is no subclinical, it's full blown hyperthyroid. I now have a referral to endocrinogy but they can't even tell me how long I will have to wait. I have started a very low dose of medication for it, and even at this early stage can feel some benefit, so would suggest a discussion with your GP about trying a low dose of the appropriate medication to see if you benefit.

There are quite a lot of similarities in our stories, so I really feel for you. Good luck.

[Lesmis85]

Channeal, I have similar symptoms to yours and I see that your husband has serious health problems. I have already posted that I have Takotsubo syndrome (TTS) cardiomyopathy and my late husband had serious heart problems from the age of 52. The constant, permanent worry is a drain on our bodies with continual adrenalin rushes so I suggest you too may have TTS. Like you, I feel unwell most of the time, even in social situations and it's very frustrating and depressing.

[Channeal in reply to Lesmis85]

Thank you for your reply, but I do not think this is the cause of my problems. For one thing, all this started long before my husband's health problems and when I did not have a lot of stress. I do acknowledge though that the stress I am under at the moment certainly does not help with my own health problems.

[Silvertail]

Have you been tested for sleep apnoea? That can make you feel terrible in the mornings as you don't get proper sleep. You can stop breathing and your body wakes you as you gasp for air or snore etc - several times a night. It's essential sleep apnoea is treated otherwise it can severely impact your health.

Both my husband and I have it. (It's very romantic as we sleep side by side with our masks on - not! 😂) Mine is mainly that my oxygen levels sink too low - am a shallow breather.

[Channeal in reply to Silvertail]

Thanks for your reply. It is funny that you should mention sleep apnea just now as just before you posted your message, I ordered a wearable oxygen monitor. Last night was actually the first night I used it and the results do show that my oxygen levels went down pretty low on at least two occasions during the night. I will have to ring my doctor; she cancelled an appointment I had on Wednesday, but hopefully she will be in this week. I can send her the report, if I do manage to talk to her. It is so hard to get to even talk to a doctor these days!

[Silvertail in reply to Channeal]

Hopefully you will get some answers soon. The GP situation is bad here in QLD too. It’s hard to see the doctor you want unless you plan to be sick a couple of weeks in the future. 🤔

[Grassmower]

I cannot comment on the medical issues. I do however have knowledge of the psychiatric system and am wondering what help your daughter and family are being offered? As a diagnosis BPD can result in bad or no treatment except drugs which will not do much to address the underlying causes of your daughters distress. As a diagnosis it will mean an assesment of behaviour and thoughts but little else and in my opion is an inadequate response to severe distress. It will be very stressful for everyone to live with. The best treatments are in therputic communities or family therapy, getting either is very hard unless people are prepared to pay and go private.

Dealing with all that while worrying about your own health will be very stessful.

[Channeal in reply to Grassmower]

Thank you very much for your reply. Our daughter was diagnosed with BPD a couple of years ago. Within the first year, she did the Stepps program but since that finished she has not really had any support. One of her main problems is that when things get too much for her, she binge drinks and then when she is very drunk, she wants to end her life. She has ended up in hospital a few times this year, taking overdoses on a couple of those occasions. When she goes to hospital, as long as she does not need medical treatment for the overdose she is just sent home after two or three hours with just a few leaflets. There does not seem to be any further help on offer for her. It seems unbelievable.

One good thing that has emerged since her last hospital visit quite recently is that I spoke to somebody from AA, really trying to find out where I could get some support for myself. I never found what I wanted, but the person I spoke to did tell me that our daughter would be welcome at meetings even though they say she is not really a true alcoholic as she does not drink every day and can has actually stopped alcohol completely for long periods in the past without any problem. Anyway, I found out the details of local meetings and to my greatest surprise, she has been going and really loves the meetings. She doesn't seem ready to stop alcohol at the moment, but hopefully it is a start.

As far as therapy is concerned, we have been helping her pay to see an online counsellor since about late 2019/ early 2020. This was not started because of BPD, she had not even been diagnosed then. She gets on really well with the counsellor though.

As you can imagine, it is very stressful for me to have to cope with my husband's cancer and my daughter's problems and I am sure it has not helped one bit with my own health!

[Grassmower in reply to Channeal]

I am glad your daughter gets on with the counselor and likes AA. I hope the AA person recomended Al Anon for you and your husband. Al Anon is a fellowship for friends of families of those alcoholics. I used to go for years as my step mother was an alcoholic.

It seems obvious to me that your daughter need ongoing support and I am glad she is getting it but it is also obvious to me that you and your husband do to. I think the model of individual therapy for mental health issues is not working for so many people and I think A&E have no systems in place for people who are in distress, there is no proper assesment and referal when people turn up their distressed.

[Channeal in reply to Grassmower]

I know, it is really appalling actually!

With regard to Al Anon, my problem is the fact that my mobility problems are currently so bad that I can only walk a minute distance. I also cannot drive as I have had a disability affecting my left hand/arm since birth.

I have been trying to find an organisation that could give me a bit of support by email, but have not been able to find anything.

Thanks for your concern, I appreciate it.

[Grassmower in reply to Channeal]

There is one NHS programme that might be useful. You can get a referal from your GP. It is called Diaglogue First and is based in London but after the first contact they often do things by zoom. It is a kind of family therapy and as a carer for your daughter you have reasons for asking your GP for a referal or your daughter could ask herself. It is run by North East London Foundation Trust. I can't find the weblink at the moment so you would have to phone NELFT to see if it is still running. nelft.nhs.uk/contact-us

[serenfach]

I am so sorry you feel so ill, and the doctors dismissed it - being female it seems it must always be "in your head", when it plainly is not.

Just a thought - I would ask for another full set of thyroid tests - TSH, T3 and T4. It is not unusual that when the thyroid first starts to stuggle, it goes a bit mad and shows as Hyperthyroidism. Then the thyroid stops working and everything slows down, like heart rate, breathing etc. It also seems that if you are diagnosed with something, the GPs do not check again. Worth a blood test just to rule this out.

[Channeal]

Thank you for your reply. My thyroid treatment started around 11 years ago. My thyroid levels have been tested many times since then including very recently and I have always been told that they are okay. So I do not think my thyroid can be the culprit here. Thanks for the suggestion though.