How to get diagnosed with NHS in UK?

[Viktor]

 

 

 

How to get diagnosed with NHS in UK?

What is your experience with dysautonomia treatment in UK and how did you manage to go through all of the different tests (tilt table, catecholamines, MRIs, xrays, echo, ECG, dopplers, ultrasounds and many others) , and to get diagnosed or find underlying cause?

I suspect that I have hyper POTS or another type of Dysautonomia, related to high blood pressure and probably high adrenalin/noradrenalin/cortisol/glutamate levels, but I don't know that because I find it impossible to get diagnosed in UK. 

4 monthes ago, at work, I had a high blood pressure, it was 165/120 and I couldnt walk because of that, so I took a taxi and went to the Leeds St James hospital emergency department.

I was surprised and very lucky to come across very knowledgeable doctor for the first time in 6 years in UK, she knows about POTS and about dysautonomia, and she said that from my story, from the symptoms that I was mentioning to her (and after ECG check that was normal), it seems to her that I may have, indeed, hyper POTS and she prescribed bisoprolol to me, even though doctors in UK usually don't prescribe anything so quickly and without GP way first, but she did, and bisoprolol helped me immensely with that one specific symptom (but I can have much more sometimes) .

She suggested me to go to my GP and get the refferal to the cardiology department to do all of the different tests and then to the neurologist to rule out other possible causes.

I went to my GP, she knows nothing about POTS, it was very difficult to convince her to give me the referral, but she finally did. But the cardiology department sent me the letter, that they dont take my case as something urgent, they said it can wait until the covid19 lockdown will be completely lifted.

Two months after that, I gave the call to the GP again and complained about extreme weakness, diziness and shortness of breath symptoms and I insisted on the tilt table test, MRI scans, echocardiogramm, also urine and blood catecholamine tests. She was very unhappy that I am trying to self refer, that I wanted to get tested finally and maybe to try to find possible underlying cause of my dysautonomia.

But she said that if my lips are not blue and the face is not pale, than its OK!!!!! and you can wait until the lockdown will be lifted so the routine appointments will be accepted, because she said that only urgent cases are accepted at the moment and it will be like that till the end of the year, most likely.

Also she said even if the lockdown will be lifted we will not give you referral for the MRI or echo, because she says that I don't see the need for that, unless your face is not pale and your lips are not blue!!!! I almost wanted to hung up the phone after she has repeated this b******* again!

But kept myself calm. She also said that MRI are dangerous because of the radiation and that echocardiogramm will not show much more than ECG (which was done before and was normal, as usually)

So basically I see that they don't want to do anything and they don't understand what is dysautonomia and why it is very important for us to get diagnosed and to have all of the necessary tests done, and why tests needs to be done even if our face is not pale and the lips are not blue!!!!

[H. Potsland, Oregon]

"She also said that MRI are dangerous because of the radiation and that echocardiogramm will not show much more than ECG.", and "we will not give you referral for the MRI or echo, because she says that I don't see the need for that, unless your face is not pale and your lips are not blue.".  She is obviously not very educated in the medical profession, is she?

I would say, "NEXT!", and not waste another fraction of an ounce of thought or effort in her direction. She is not fit to be diagnosing or treating any patients for any type of issue with her form of logic. (I am obviously not from the UK. I hope it's okay that I commented. ).

 

[Viktor]

I agree, but this is the free UK treatment :)) I cannot afford private hospitals. I tried others GPs before but all of them unnowledgeble, they know nothing about POTS or dysautonomia and they sound like students that have just been graduated and they can't advise much more than: "stay hidrated, good diet and sleep and you should be fine" 

[H. Potsland, Oregon]

It can be free here, too. It just depends upon the type of insurance you have. Over here, we have the freedom to choose whatever doctor we'd like to go to. There are usually 3 tiers of our health insurance level. Doctors have to sign up to be with various healthcare insurance companies. Doctors in Tier 1 level of our health insurance plan are the least expensive and in some plans they are free or practically free. If we want to see a specific doctor who is not in our plan, we have to make the decision as to if we really want to have a big bill to pay, or not. If we don't like a doctor, we can ask to be referred to a different one. If we have specific doctors we choose specifically to see, then we are referred to those doctors. That is what I will be doing as I determine which neurologists, electrophysiologists, cardiologists, etcetera are POTS doctors. 

In the UK do you have the ability to search the web for information about specific doctors and what their specialties are? Do doctors have a bio listed on a website for the practice or hospital that they work for? I have come across various research papers on various medical topics that were conducted in the UK and they list the names of the UK medical students. Over here most doctors have both and most doctors state the specific types of medical cases they treat. That is of course not always the case, as I have discovered about a doctor that someone mentioned here. If people didn't say on this site that she treats POTs, I would never know by the information that I found for her thus far. Maybe I just haven't searched hard enough yet.  I'm searching on things like dysautonomia+oregon, pots+oregon, autonomic+oregon, or change it to "near me" or the next state north, Washington. 

Maybe you could find out which medical schools teach dysautonomia and autonomic dysfunction, find out which professors teach those subjects, track down their email and/or call them to see if they can help you?

 

[Viktor]

No, in the UK helthcare system is absolutely different. I just found this:"

Only around 11% of Britons have some form of private health insurance to provide additional coverage outside the National Health Service (NHS) . But the vast majority of British people don't deal with insurance companies at all.

I also don't have any insurance and looks like its better not to have it in the UK

[MomtoGiuliana]

Our physicians list includes doctors in the UK.  Not sure if you'd be able to see any of them but you may want to take a look:

https://www.dinet.org/physicians/

[Viktor]

1 hour ago, MomtoGiuliana said:

Our physicians list includes doctors in the UK.  Not sure if you'd be able to see any of them but you may want to take a look:

https://www.dinet.org/physicians/

Are they private? Probably also take 200 GBP only for consultation, just like Dr Sanjay Gupta from York. But thanks, will have a look. 

[Guest KiminOrlando]

Free health care scares me so much. I hope you can get help. I know people in the UK and Canada who have had to do self pay to get help. If you have something weird or time sensitive this type of system doesn't seem to work. If you have diabetes or high blood pressure, it probably works. 

[dancer65]

Hi

I am in Uk. Have you looked at STARS website, they are a charity for syncope and POTS as well as other cardio conditions . They have amazing staff who you can speak to for help, support and advice . I ended up joining £15 for the year for their newsletter and their literature which is useful for giving out to those who don’t know about dysautonomia. They helped me find a consultant who my GP referred me to in London, the syncope unit at Royal Brompton. The other website is POTS uk who have info and lists of consultants.

 

 

[Viktor]

Thanks I will have a look on Stars website, but the another one you have mentioned - POTS uk website list, I saw it and one consultant that I have picked (at York City) takes 200 GBP only for the consultation, so I believe all of them are take charge. 

[Pistol]

Hello @Viktor - yes, unfortunately specialized health care is expensive, it is in the US as well. I had to pay 350 dollars for a specialist visit that was not covered by my insurance, so this is normal. Unfortunately rare diseases cost a lot!!!! ☹️

[Viktor]

3 hours ago, Pistol said:

Hello @Viktor - yes, unfortunately specialized health care is expensive, it is in the US as well. I had to pay 350 dollars for a specialist visit that was not covered by my insurance, so this is normal. Unfortunately rare diseases cost a lot!!!! ☹️

I would pay if there was a guarantee that they can help me. But with rare diseases you never have one. So I would say no, until this disease will affect my life really seriously and I will not be able to work. For 16 years (now I am 32) I was managing this disease quite well on my own. Last two or three years I have noticed the progression of the symptoms so now I am on a beta-blocker so it's still OK. There are bad days, but even when they come I can still work and do all of the daily activities, domestic chores (except exercices), so I would stay away from paid options at the moment. But I would still pay if there was a guarantee that they will help. 

[Pistol]

Hello @Viktor - that is great news that you have been able to manage mostly on your own!!!! And whether or not you receive specialized care - bad days are still a reality. Progression of symptoms is common in HPOTS - for me the symptoms have changed as my body aged. I am fully disabled from POTS, homebound and sometimes bedbound, despite my excellent specialist's care. But with the proper meds ( that I would not have had without the specialist ) I would clearly be bedbound permanently. 

The thing with seeing a specialist early on is that with proper treatment you may be able to maintain your independent life ( not saying that you necessarily would get worse ). I spent the first 4 years of this illness fighting it, working despite the symptoms ( and despite the advice pf physicians, employer and family, who wanted me to stop working due to my severe symptoms ) and inadvertently made the illness worse. So maybe getting expert treatment BEFORE your symptoms get so bad that they affect your quality of life may help you to avoid this scenario. 

In any case - I wish you well and hope you find affordable care 😊!

 

[dancer65]

You should be able to be referred via NHS to a POTS consultant , I was referred from Wales to London But of course it’s down to your GP. I only waited 3 months to see my consultant but I had already had my diagnosis 

Dr Gupta is a lovely man I have been to some of his seminars in York on POTS and other health issues. I am a member of another POTS group and everyone who has him as their consultant speaks highly of him .

 

[Viktor]

2 hours ago, Pistol said:

Hello @Viktor - that is great news that you have been able to manage mostly on your own!!!! And whether or not you receive specialized care - bad days are still a reality. Progression of symptoms is common in HPOTS - for me the symptoms have changed as my body aged. I am fully disabled from POTS, homebound and sometimes bedbound, despite my excellent specialist's care. But with the proper meds ( that I would not have had without the specialist ) I would clearly be bedbound permanently. 

The thing with seeing a specialist early on is that with proper treatment you may be able to maintain your independent life ( not saying that you necessarily would get worse ). I spent the first 4 years of this illness fighting it, working despite the symptoms ( and despite the advice pf physicians, employer and family, who wanted me to stop working due to my severe symptoms ) and inadvertently made the illness worse. So maybe getting expert treatment BEFORE your symptoms get so bad that they affect your quality of life may help you to avoid this scenario. 

In any case - I wish you well and hope you find affordable care 😊!

 

May I ask you 2 questions? 

1) Did you ever find underlying cause of your POTS or suspect what it could be? 

2) What symptom makes you disabled when you try to stand up and walk? Is it high blood pressure and heart rate/dyziness/fainting? 

I was also bedridden for a few days last year, on two different occasions, because of the high blood pressure and heart rate I couldn't walk. Its all started when I tried to run without preparation. Second occasion was when I woke up and was feeling unwell and started to walk.

I believe I always had mild symptoms of POTS. But from the age 16  quite noticeable health problems started. I had neck injury and concussion. After that I didn't go to the doctors for the xrays and treatment. And then one day, at night, I was playing mobile games for too long, was looking at that tiny little screen and got overstimulation feeling and then the most horrible symptom in my life happened then, that symptom ( which I don't even want to mention, it was so scary and for the first time) never came back again luckily, but other symptoms are still haunting me. 

 

 

[Viktor]

21 minutes ago, dancer65 said:

You should be able to be referred via NHS to a POTS consultant , I was referred from Wales to London But of course it’s down to your GP. I only waited 3 months to see my consultant but I had already had my diagnosis 

Dr Gupta is a lovely man I have been to some of his seminars in York on POTS and other health issues. I am a member of another POTS group and everyone who has him as their consultant speaks highly of him .

 

Hi, Thanks for the info. And, I didn't say that Dr Gupta is not lovely I just mentioned that it's expensive for me. 

[dancer65]

Oh sorry if I made it unclear I was trying to say how highly people speak of  Dr Gupta! I know going privately can add up quickly if you have to pay for tests etc, one reason I went NHS myself 

[Pistol]

1 hour ago, Viktor said:

May I ask you 2 questions? 

1) Did you ever find underlying cause of your POTS or suspect what it could be? 

2) What symptom makes you disabled when you try to stand up and walk? Is it high blood pressure and heart rate/dyziness/fainting? 

Hi @Viktor - in my case the underlying cause of HPOTS is suspected to be genetic, since it runs in 3 generations of my family. I too had symptoms since childhood but it did not get triggered full force until later in life. The symptoms that made me disabled are fainting, seizures and inabiltiy to concentrate as well as fatigue. In my case BP goes both up and down, so I faint when it drops too fast and I have seizures when the blood vessels constrict so severely that there is not blood flow to the brain and the BP shoots up really high. Before proper treatment this would happen easily when i stood up, walked or even simply heard the phone ring!

[Viktor]

45 minutes ago, Pistol said:

Hi @Viktor - in my case the underlying cause of HPOTS is suspected to be genetic, since it runs in 3 generations of my family. I too had symptoms since childhood but it did not get triggered full force until later in life. The symptoms that made me disabled are fainting, seizures and inabiltiy to concentrate as well as fatigue. In my case BP goes both up and down, so I faint when it drops too fast and I have seizures when the blood vessels constrict so severely that there is not blood flow to the brain and the BP shoots up really high. Before proper treatment this would happen easily when i stood up, walked or even simply heard the phone ring

Thank you. Your symptoms are very different to mine, since I never fainted in my life and very rarely had low blood pressure. I do have problems with concentration and fatique as well. During my life I had maybe 30 or 40 different dysautonomia symptoms and some of them were very rare and weird, so weird that people were laughing when I was mentioning about them and they thought that I am joking. 

I am almost always  overstimulated when I am walking or watching movies/thinking too much, mental and physical exercices (so maybe high adrenalin/noradrenalin) also it seems like I probably have high glutamate (because I read that glutamate is excitatory neurotransmitter) . Also seems like I have a very high cortisol. Also I think I have problems with blood circulation and brain blood flow, this is something that especially clear to me during the flights on the plane, when I have a horrible ears pressure and pain, head pressure and other weird things especially during plane descend, also abnormal sweating and cold hands. Two weird things about me also that I have severe alcohol and caffeine intolerance... 

But I amazed how different POTS can be in every human. I think there is should be the drug for you that will allow you to make a further progress in your healing because seems like your symptoms got worsened not because of the trauma or infection. So it should be reversible. Hopefully, new progressive/novel cure is coming for all of us in near future. I constantly googling Internet and type something like "New cure for POTS/dysautonomia". But not much so far, except this one, - 

https://www.drugtargetreview.com/news/57007/drug-discovered-for-postural-orthostatic-tachycardia-syndrome-pots/

[Nin]

I'm from Wales and unfortunately had to pay private for a tilt table test as I knew I would still be be sat here waiting because of covid. My GP did refer me but they just won't put it as urgent. I paid £750 for tilt test and then consultation afterwards. After that I paid again to speak to Dr Gupta as he is highly recommend and I think he just forgot about me. So I have now just got an appointment through the NHS and a specialist nurse is in contact with me and hopefully going to try new medication. She did say they are not even doing tilt table test now, but obviously I paid to have it already so I've cut that out. To be honest getting a answer how you got it in the 1st place is probably highly unlikely unfortunately. I think we have only 1 place in the UK where they do extra testing  and again your GP or a consultant got to refer you. It's such a long drawn out process!