Frustrated/Scared - Would love some a... - British Heart Fou...

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Frustrated/Scared - Would love some advice

KageJam profile image
46 Replies

Hello,

36M here.

Firstly, for those already diagnosed with a heart condition I am really sorry if this post comes off as insensitive, I just don't know where else to turn. In early 2022, I awoke from my bed in the middle of the night with a very intense pain in my chest. No other symptoms such as increased heart rate, sweating or radiating pain. It went on for about 30 minutes and I actually had my phone in my hand I was about to call 999 until the pain stopped and it never returned, I woke up the next morning felt absolutely fine and got on with things. I mentioned it to my GP and they told me if that was a cardiac event, we wouldn't be talking right now because you'd be in the ground. They ran like a wide panel of bloods (FBC, organ functions etc) all came back normal. I went on with life.

3-4 Months later I began to feel 'off' is the best way I can describe it. I am overweight (16.5 stone) but have always been very active through gym, 3-5k running and sports. I started to develop fatigue, chest pains, dizziness, shortness of breath and intermittent coughs to the point where last summer anything more than walking was difficult.

One morning whilst taking my bin from the road side into my back garden, I developed what I can only describe as like tunnel vision, I didn't completely black out but it was enough to make me very disorientated and I fell over. I went to A&E, they did bloods and one thing noticeable came back was a 'Dimer' positive result. They did an ECG, this was normal. They thought I may have a blood clot, a chest X-Ray was normal and the following morning I had a Chest CT with Contrast, this was also normal. I was referred to the Respiratory team who did a Bronchoscopy early 2023 and nothing was found. I was subsequently diagnosed with Asthma due to an elevated Feno test and sent on my way. The only thing that has improved since taking an inhaler is the cough, that is gone now.

I have been trying very hard since then to get active again but I'm just hitting a wall. I can walk but it takes about 30 minutes for my heart rate to come down. Last week I tried to push myself to try a run and after a few minutes I had to stop as I noticed my heart rate was 180, that took an hour to come down and I got very dizzy. I mentioned this to my GP and they brought me in for an ECG which was again normal, they told me my Blood Pressure and Cholesterol have always been in normal ranges and they had been done frequently over the last year. I asked is there any chance something is wrong with my heart and she said my chances of cardiac issues is really small because I have no risk factors other than being overweight. She said she will refer me to Cardiology for a Stress Test but said there's a very strong possibility they will decline to see me because my risk is so low.

I don't know what to do. I just want my life back. If Cardiology refuses to see me, what do I do?

For anyone who takes the time to read all that and can offer some advice, I am so thankful to you.

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KageJam
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46 Replies
Gribbin profile image
Gribbin

GP's aren't always right, dare I say... but I am surprised none of those tests have shown anything wrong... good news there, but not helping you solve this.I had no warning...although my cholesterol has always been high, blood pressure also...overweight, and a family history of heart disease, but nothing from my GP... all my siblings were on statins.

One morning at work out of the blue...tunnel vision, sweaty... lay down before blacking out... ambulance...a&e...raised troponin... all the same tests and scans you had... no dice... to went in for an angiogram where the extent of my heart disease was discovered, then not allowed out of their sight until the big op.

Hopefully you will get somewhere with cardiology... maybe an angiogram is what you need?

I'm no expert, only been through this once, thankfully 🙏

KageJam profile image
KageJam in reply to Gribbin

Thanks for getting back to me and I hope you're doing well now. Sorry if this sounds stupid but what you are describing at your work, was that a heart attack? It sounds similar to what I experienced on that run although I did recover short of blacking out.

I'm really concerned but at the same time, I think if I go to A&E I'm just wasting NHS resources because I've been down that road when I fell over last year and whatever this is, it's not showing on bloods, x-ray or CT and I know that's all they can do for me in an A&E environment.

That's the worst part, I feel stuck. I just have to hope Cardiology will consider looking at me.

Gribbin profile image
Gribbin in reply to KageJam

I had a very similar event a few days before, and after half an hour was back on my feet, and visiting gardens!... that was my warning.... the second event happened at work, luckily my wife works at the same college, so witnessed both events... the second time she took no chances a called 999.I felt silly lying there, oh I'll be alright in a minute, just get me to the GP and they'll give me a pill!?... my wife called our local surgery, and they said DIAL 999 NOW!

But in answer to your question yes I had a heart attack... well two actually! This is what my raised troponin was caused by.

dlowell profile image
dlowell in reply to Gribbin

I suggest you gave a CaRi-Heart CT scan which is one of the most advanced heart diagnostic tools, and go and see a top consultant if you really want to check your heart health. You would have to do it privately and no doubt it’s expensive. Links below that you might find helpful.

rbhh-specialistcare.co.uk/s...

hcahealthcare.co.uk/facilit...

roughquest profile image
roughquest in reply to dlowell

That’s where I’d go - and that’s where I went!After the initial outlay I’m back NHS.

Tos92 profile image
Tos92

I’m sorry to hear about what you’ve been experiencing.

I’ve had a slightly elevated D-Dimer since last year. I had a CTPA to rule out a blood clot. As your tests so far have come back negative for any blood clots, I would find reassurance in that. There are several reasons why a D-Dimer might be elevated and it is not always related to your heart. Inflammation or infection in the body are also other reasons which may cause a rise in D-Dimer for example.

You can ask for a second opinion if you don’t feel confident or agree with what your GP is saying.

Hopefully cardiology will agree to see you and carry out the test. I have found myself going private for tests, which I’ve had to pay upfront for however, if you have private health insurance, that could also be a potential option for you to explore if you exhaust all other routes.

I’m sorry I couldn’t be of much help but do let us know how the appointment goes if cardiology go ahead with it.

All the best.

Tos

KageJam profile image
KageJam in reply to Tos92

Thank you and I hope you are well. I do have medical insurance through my work so I may explore that and see if anything like this is covered. I should've mentioned this on my original post but I don't think a second opinion will help because my GP said they have a cardiac risk calculator and it's factored into all referrals, she mentioned my risk was coming out at single digit percentages.

I completely understand the need for these things otherwise our health service would be even more spread thin but I just wish they'd look at symptoms some times instead of a risk percentage as a means to decide whether someone needs help or not.

Truffles2 profile image
Truffles2 in reply to KageJam

If you have private health insurance use it. I had an episode of AF at work. Went to A&E and was treated for that via NHS. They did not investigate further even though there was a strong family history of heart disease in my family. I thought as I had insurance I would just get my heart checked out. Had CT angiogram which showed triple vessel disease followed by angiogram which showed I had nearly blocked arteries and ended up 3 weeks later having a CABG x3. Afterwards was told if I hadn’t had it done I would have had a major heart attack or even be dead. When I saw the Cardiologist I said to him I’m sure my problems is probably anxiety and he told me to let him decide what the problem is. He was lovely. So please put your mind at rest and go private.

Memories123 profile image
Memories123 in reply to KageJam

Hi,

All I want to say is ring back the GP and ask for echo and CT scan !!

Sootyismycat profile image
Sootyismycat

Dear KageJam

Of course we don’t mind you posting. Your symptoms are very much like mine, in 2016 to 2020. But where I Was lucky is that prompt diagnosis of stenosis lead to an op to give me a new valve.

The stenosis was classified in about 2016 as mild. Then in 2019 moderate. But come 2020 it was severe and new valve urgent, urgent, urgent.

The op was fantastic. Staff beyond brilliant. Ok three months convalescing but then I had my life back. The only advice I can offer is that you really need to get your weight to acceptable. I am one of those lucky people that can get weight to low in no time. But no doubt you will need a gradual prolonged time of weight reduction.

Having re read your post, your symptoms are amazingly similar to mine. The final straw came when I started to fall forwards.

Best wishes

Sooty

KageJam profile image
KageJam in reply to Sootyismycat

Thanks Sooty, I hope you're well. I completely agree about my weight. I was actually in the best shape of my life before all this started but things just went down hill so aggressively and frankly a lot of that was own my fault due to feeling sorry for myself about not being able to exercise properly and do things I considered to be 'simple' so I ate poorly as a result.

All I can do right now is walk, most other things strain me too much. So I walk every day and I'm back to eating very clean.

High_fives profile image
High_fives

hi KageJam

Just to add to what others have said, sadly it's definitely possible to have a heart attack while having a very low risk profile (ie normal BMI / BP etc) and afterwards giving a normal result for ECG, 24hrs Holter test & stress test. Symptoms for HA vary wildly which is why some are called 'silent HA' because they're undiagnosed at the time.

In my case it was only apparent in the Echo that my heart wasn't working as it should (with reduced EF) and I guess my body was compensating for this by working harder in other departments.

The good news is that once identified the Dr can do alot of things to improve and prevent progression of any problems / symptoms.

So keep pushing your Drs until they get to the bottom of why you don't feel great, you'll feel so much better once everything is identified, and they should continue checks until you the problem is identified.

If you think a particular test would help and it's available privately, and you can afford it, I'd definitely do that.

Good luck

Cat04 profile image
Cat04

As I was reading your post and the replies I was thinking that sounds like me. I had paroxysmal-atrial-fibrillation which is notoriously difficult to capture on ecg unless you wear a monitor for a few days or more. Have you had an echocardiogram which will show heart structure and function. Your works insurance should cover a consultant with a private cardiologist, if you can choose ask for a cardiologist who is an electrophysiologist too. Like Sootyismycat I had severe aortic stenosis and needed a new valve, also some arrhythmias so had an ablation at the same time as surgery

Yumz199725 profile image
Yumz199725

Ahh sorry you haven't had any luck getting a diagnosis, as someone who suffers with those symptoms on a daily basis I can understand why you must feel so scared and lost 💔💔. So annoying when you know deep down in your gut something is off but all the tests come back as normal. Definitely continue to advocate for yourself and I really hope your able to see a a cardiologist. I also have asthma and some asthma symptoms can mimic cardiac symptoms like, tight, chest, breathless so very hard to differentiate between the two. Please continue to push for a diagnosis, if I was in your position I would be scared and frustrated aswell 💔😕. Do you have any family history of heart problems?? Anway wish you all the best and keep us posted when and if you get an answer to your symptoms and a possible diagnosis. I really hope you do ❤️.

Winter4519 profile image
Winter4519

Hi reader I can relate to this some what. I am also overweight for years I was having blackouts difficulties with breathing had countless Heart monitor test were coming up negative. In 2010 I had a black out and due the test they said that I had high blood pressure so put on medication. In 2012 Had a mild Stroke put on more medication. In 2019 had a stress Test it showed that i had a weaken heart rate. Since then I have numerous MRI and ECG test each time the heart as progressively gotton worse. I would just go ahead and keep fit don't over exercise take each day as it come and if the the problem continues just keep knocking at the doctors door

andy110519 profile image
andy110519

Hi KageJam.Sounds like there is def something wrong and as others have said GP's don't always get it right.

I would have been low for risk of heart issues, BP, weight etc OK, no family history, fairly fit but I had a bicuspid aortic valve and ended up having emergency surgery.

Have you had an echo done? I think this would show up a faulty valve, it's how they diagnosed mine and checked the new one was working, and they are a lot cheaper than an angiogram.

Hope you get to the bottom of it soon and get the appropriate treatment.

Take care.

Andy

Ascb profile image
Ascb

Ask them for a heart echo. As well as needing to check out the structure of your heart, they also need to consider the possibility of pulmonary arterial hypertension. But don't Google randomly for information on this. If you do want to find out more look at PHA UK. Let us know how you get on, it's so frustrating when you know something is wrong but the medics are saying tests are ok.

Tigger_2 profile image
Tigger_2 in reply to Ascb

I can relate to the last bit.

Been on a pacemaker for 18 years with complete heart block.

Now getting 100 PVCs per hour and feeling awful.

Cardiology say nothing wrong with the PM. Maybe not, but there's something wrong with me. 40 beats a minute from a PM set to 70 BPM isn't right. Can I get this into them? Of course not.

devonian186 profile image
devonian186

Sounds like an angiogram is in order as your symptoms sounds as if your heart is at the root of your problems.

No one ese has said this but surely at that weight you are obese? That will cause you a lot of problems that will cause your heart to work a lot harder.

I would try to lose weight in a sensible fashion and persuade your doctor to go for an angiogram. These can be obtained privately if the NHS doesn't think it necessary, but one way or another, at present you are in limbo and need to break out.

LavenderBee profile image
LavenderBee

Previous poster mentioned an angiogram and |I agree. In 2019 I experienced symptoms with a really tight jaw and shortness of breath. ECG, stress test and bloods all came back fine and I was diagnosed with micro vascular angina and given a spray for when an attack happened. It didn’t sit right so, and I appreciate what I say next might not be possible so hear me out. I paid to see a cardiologist privately who then suggested an angiogram, again I had to pay for this. He explained that because I presented as low risk, not overweight, very active etc and all the stress tests clear I would not be able to force an angiogram on the NHS. Anyhow I went ahead and paid for an angiogram expecting no issues yet he discovered i had a 99% blockage on my LAD. He was able to fit a stent there and then and I am now fine albeit taking several medications daily. I would suggest not being too alarmed at this BUT definitely pressing for an angiogram on the NHS. Explain you want to remain working and healthy and as things are you are potentially not going to do this as you are both worried and also not really aware of the actual problem. Hope this helps.

Tigger_2 profile image
Tigger_2 in reply to LavenderBee

It's come to something when you have to press for tests or even consider going private.

My so-called caring consultant grants me a 10-minute phone call after a 10-week wait.

I daresay if I crossed his palm with a couple of thousand quid he would see me tomorrow at one of his private clinics.

No chance of that happening.

LavenderBee profile image
LavenderBee in reply to Tigger_2

Absolutely wrong that anyone should have to pay but cardiac consultants have to make tough choices and if you are ‘low risk’ unfortunately that might mean they do not feel able to suggest an angiogram . I got involved with the BHF research after my experiences. What I would say is don’t be afraid to go back to your GP / Cardiologist and press for an angiogram or test that will actually look at the condition of your heart. Be firm but polite. Good luck

Tiny775 profile image
Tiny775

Have you had covid at all? Could it be long covid symptoms??

Carercmb profile image
Carercmb

So sorry as anxiety stops you going forward with any confidence.

The good news is all your tests come back clear.Bad news is you have a gut feeling what you experienced is a warning for something serious.

I had similar symptoms but not as severe and was dehydrated.

Are you able to go private for a consultation? Only other option is to tell your GP your fear and press for an angiogram.

If you have any unusual symptoms at all don’t hesitate to call 999.

Best help for yourself is to loose weight , this will definitely put you in a better position if there is something wrong.

KageJam profile image
KageJam

Thanks so much to everyone who took the time to reply. Frightening to see how similar my symptoms are to some of you but it was that kind of honesty that I wanted. My GP is going to do a private referral to Cardiology. I hope to send an update down the road.

Shrodie profile image
Shrodie

i would advice you ask your gp to organise a holter monitor test to look for any electrical problems with your heart, these arrythmias don’t show up on other general tests on the heart

Dollymixture79 profile image
Dollymixture79

Hi. I can understand your frustration and worry about future episodes. Other than advertising you to ask to s

fishonabike profile image
fishonabike

so sorry to hear about your problems, this is bound to cause you concern lack of a firm diagnosis can be as worrying as know what the problem is

may i suggest that you read up on INOCA (Ischaemia with No Obstructed Coronary Arteries) - the websites od The International Heart Spasm Alliance and INOCA International are very informative

and you might find it helpful to read the redponses to Mish80's post on MINOCA

JAVA12 profile image
JAVA12

If all else fails through the NHS and you have around £400 available, you could see a cardiologist privately. Initial consultation is around £300 plus £80 for an ECG. Obviously each test on top of that has a price. If they find something, you can switch back to NHS for treatment. Good luck.

roughquest profile image
roughquest in reply to JAVA12

THIS 👍

HHH2017 profile image
HHH2017

Hi KageJam, your post isnot at all insensitive and you are right to post here. So sorry for what you have and are going through.

I really hope the cardiology team accept your referral and do the stress test and your symptoms do seem to come on when your heart is under any stress so it should be a good test and give some indication of whats happening.

If they don't or the appt is a long way off do seriously consider using your private health care but a 2nd opinion and to get tests such as the stress test. Good luck & do keep us posted.

LSCE profile image
LSCE

Hello, you mentioned a diagnosis of asthma. What inhalers are you taking and how long have you been on them?

KageJam profile image
KageJam in reply to LSCE

Hi - I take Symbicort. I take it twice a day (Morning and Night). I have been doing that since March/April of this year. Originally I did a Feno test earlier this year and it came back at 61 which I was told was pretty high that's why Doctors were pretty confident this was Lung/Asthma related.

I did another Feno test recently and it was 31 so that was considered a good improvement and my coughs have completely stopped, my peak flow is 600 which is good. The result at 31 still indicates mild inflammation but I was told I was free to go on with exercise as normal but just keep an eye on my peakflow which has been good as of this morning.

LSCE profile image
LSCE in reply to KageJam

So this hasn't helped with breathlessness (SOB) then? just cough, and as you say the peak flow is as expected. So the SOB may be other cause, although the Feno test still indicates airway inflammation. Sorry that's of no help, they haven't suggeted increase symbicort to determine if it helps with the SOB?

KageJam profile image
KageJam in reply to LSCE

Did a great job for the coughs but correct, no difference in my shortness of breath. It's actually gotten a lot worse since that run I attempted last week as well that I mentioned in my post. As an example before my SOB was minimal until I attempted any kind of exercise and then it really came on. Yesterday I was trying to train a new hire and I felt it even while speaking.

Respiratory said they would review me again in a few months because with the improvements in my Feno levels and Peak Flows they were happy the inhaler was working but not happy enough yet to discharge me.

Henry20 profile image
Henry20

So sorry to hear about the issues you have been having. It must all be very worrying and perplexing.

5+ years ago, I felt there was something wrong, went to the GP and explained that I was getting puffed just walking about half a mile. Also getting mild pain in my chest. High cholesterol was found. Referred to cardiology and they were just going to give me pills. (I'm slim and had few other risk factors, I rattled with all the pills I was given. I gave up booze entirely and lost weight. The docs seemed to approve of that, and still do when I say I'm TT.)

In a discussion with the consultant, I had to really talk a lot to get more action - an angiogram was offered and accepted. 98% blocked artery in one place and another about 70% over a longer length.

One stent fitted, HA avoided from that one. But it still wasn't getting me back to where I should be. More chat again after a blue light trip and a night in hospital. Little could be found; No action was going to be taken, they said they didn't really know what to do. I was about to be discharged when the main consultant came to me and offered a 48mm stent which I accepted.

Recovery took a while, but I'm still here. What I learned was that when something feels wrong, there is likely to be a reason. What made the consultant go a bit further for me? I'll never know. But I kept talking, using language not in any way arguing, just tried to be pleasant and reasonable. Also, Doctors like to be told about symptoms that they can relate to causes.

I hope you can find a way forward and return to your normal life.

Henry

PS Have you had covid? Just think about it and could you be seeing a form of long covid? Or have you been reinfected with covid on a continuing basis. Testing on a regular basis might be interesting.

Hiphop6 profile image
Hiphop6

Ask for a second opinion. An echocardiogram as well. You know your body its telling you something. Good luck.

TubbsTattysyrup profile image
TubbsTattysyrup

It’s definitely possible to have heart issues that go undiagnosed - 7 months ago my GP told me I had less than a 1% risk of a heart attack. I am 47, very fit (run, lift weights every day), BMI of 18, non smoker and low BP and cholesterol. I felt odd for about 6 months, had a pain in my lower throat on exercise and sometimes had whacking great palpitations and felt like I might pass out. One morning I felt very unusual - not ill, just couldn’t shift the pressure feeling - called 999 feeling guilty for time wasting and was blue lighted straight into the cath lab for a stent. I had a STEMI heart attack and my LAD was totally blocked. I could have died. My GP surgery has since had multiple meetings about me and I fear my name strikes fear into their hearts whenever it’s mentioned!!

I hope you get to the bottom of things and sort out whatever is causing your problems. An angiogram sounds like a good idea, I wish I’d pushed for one!

Dewson profile image
Dewson

You must not take no for an answer, make sure they understand your symptoms are real, do not understate them. From my experience of heart disease during the last 15 years you should ask for an echocardiogram then an angiogram. I was largely ignored even though they said I had a heart murmer,until I developed unstable angina which happened to coincide with a sympathetic and competent cardiologist being on duty in my local hospital. I needed AVR and CABGx3. Good luck!

Janet29 profile image
Janet29

Oh dear, my partner came home from work ill with breathlessness in March 2021. We were in the pandemic, so he saw the gp the following day (after a neg covid test) then they did an ecg which showed "something" bloods showed something and after more ecgs, scans etc was told he had stage 3 heart failure (family history of heart problems) after pushing and pushing for an MRI, we pestered for an appointment with a cardiologist. He said the scan was "perfect" then told us it was likely my partner had suffered from infection, Myocarditis, which had resolved itself. All meds taken off him, then BP was high, lots of trial & error to get him back on correct BP meds. During this time, he has on 2 occasions been given iron tablets for anaemia. He is due another blood test next week. We have in 2 1/2 years seen the consultant once. Recently my partner went to dentist, he told them he wasn't sure what is wrong with his heart so they wrote to consultant and the reply said he has "mild mitral regurgitation" and "mildly impaired left ventricular function" What i dont understand is why is he very fatigued, he cant walk like he used to due to breathlesness, he is exhhausted all the time, he struggles to peg a bit of washing out. Why has he has anaemia diagnosed twice and iron given to solve it, no further investigation. Its all a mystery to me. Very long wait for cardiology appointments, hard to get to physically see the gp. 2 week wait for a phone call appointment. Can't get anywhere with all this. Has anyone else experienced anything like this? If so what is your outcome?

Deack profile image
Deack

HiHeart issues smack you into a whole different world

Do you have a blood pressure monitor ?

Their really cheap , try regular monitoring after exercise at rest etc etc and find the common factors causing this.

It took me a while but now I have a some insight into the causes of my chest pain.

Hope you get it sorted 👍

KageJam profile image
KageJam in reply to Deack

Don't have a Blood Pressure monitor but might look into one. I do have a Garmin smartwatch and I understand whilst no Smartwatch should be used for medical purposes it's supposed to have a pretty good heart rate sensor.

My resting HR is around 60-65. Whilst walking around the house it is typically 80-100. When doing a brisk walk it is 90-120. It's when I attempt to do anything more than walking that it skyrockets. When I attempt to skip or run (both things I did with little issue about 18 months ago) it jumps to around 170-180 and I just feel awful, I mean it doesn't feel like normal exhaustion. It honestly feels like I'm about to pass out.

Svelterer profile image
Svelterer in reply to KageJam

All you have said sounds like you may have had an M.I. possibly in the region of LCx, and are suffering from cardiac ischaemia - both of which may well be electrically silent so will present on ECG as essentially normal. As many others have said, if you can afford to, go private in the first instance, Echocardiogram/CT angiogram/consultation. Stick it on a credit card if you have to. You will have the results within a week and can pass these onto the NHS if any physical intervention is required. All the best.

Tigger_2 profile image
Tigger_2 in reply to KageJam

Definitely recommend minimum of BP monitor and worth getting a decent one.My old Omron something like MIT10 has done sterling service for over 12 years. Has USB for downloading readings and quite good for arrythmias.

Oximeter useful as well. Mine's a ChoiceMed from Amazon same as GP uses.

Records are key when it comes to getting someone's attention.

Sheffield55 profile image
Sheffield55

Sorry about your experience. Your heart rate is quite high. I experienced thesame thing. Normal blood pressure, Normal ECG, Normal Cholesterol levels. However my heart rate is on a constant high at rest 130. Cardiologist had to place me on a beta blocker. Being on it for a year and it has helped me alot to reduce my heart rate and the chest pains have reduced.

You will definitely get a solution for this from a cardiologist and not a regular General practitioner.

Good luck😊💗

Butcherboy profile image
Butcherboy

Have you thought about heading straight to ED? I had the same. A little chest pain. GP said there was nothing wrong. I work in the trade and a couple of intensive care doctors checked my bloods, all clean. Four weeks ago, I had chest pain at work and went straight to ED. Full bloods which were clean, apart from a troponim of 20. Clean ECG. But ED’s scoring is three tick boxes. Troponim present in the blood, chest pain, ECG. They only need two boxes ticked to admit you.

For me, that was the trop and the chest pain. FBC and ECG was telling the ED consultant to kick me, but cardiology admitted me for an urgent angio. Thankfully they did. Was in acute coronary syndrome and I’m two weeks post op a triple bypass. Never take no for answer. Cardiac episodes never fit a mould. So just go to ED and get the cardiology referral. Failing that. Pay to go see one privately and get them to transfer you to this NHS list.

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