What to do: Yesterday I went to local... - Lung Conditions C...

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katieoxo60 profile image
38 Replies

Yesterday I went to local hospital where my GP referred for advice on double vision ect I saw a neurologist after waiting some twenty weeks (which is Quick for post covid appointments) The Registrar from the department did tests for neurological deficit which as expected were clear. However he would not let me go home as he said my blood pressure was too high so transferred me to MDU for a blood test and monitor my blood pressure and I was told I would be seen by a Dr , and given tablets. All the staff were very attentive in both units, the amount waiting was massive, I was given all the tests asked for by registrar, fed and watered but some five hours later I had not been seen by a Dr so I left the unit and got a taxi home at around 10pm. This morning according to my machine my blood pressure is good & normal considering I have COPD but leaves the dilemma that we do not know what is causing these large readings when I attend outpatients and whether I need to be put through this ordeal on the rare occassions I do visit outpatients. Or should further steps be taken to illiminate other possible causes which are making the blood pressure erratic .? I have had all the usual tests by heart dept which were normal in the past , but no recent general tests for my chronic illnesses. Of course I am not flavour of the month as I left the DEpt when it was obvious I was not going to be seen by a Dr just discharged when my blood pressure came down and I was concerned about getting home safely in the dark., tired and thirsty. It seems a total waste of peoples time , expense ect if no conclusion is reached . Anyone else had similar experiences? It actually took 8 hours to do this one trip for treatment /diagnosis .

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katieoxo60
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38 Replies
Damon1864 profile image
Damon1864Volunteer

All that waiting around and still no further forward what a waste of your time. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

in reply toDamon1864

Its extremely frustrating isn't it?

Its so frustrating isn't it when you have waited for ages and its all for nothing isn't it?

sassy59 profile image
sassy59

It’s so frustrating Katie and not great to be left waiting for such a long time with no conclusion. I remember a few years back having a wildly racing heart. Pete took me to A&E where we waited. I had an ECG and then nothing happened. It was gone 9pm when I decided to leave because Pete was tired and needed his drugs. I never did hear anything but have since been diagnosed with Atrial Fibrillation. I wish you well and hope you’ll be ok. Xxx💜

Bevvy profile image
Bevvy

I appreciate their concerns and understand their hesitancy. Have you checked your bp machine to double check it is working accurately? Might be worth doing via gp surgery/nurse. If is accurate then possibly is it a severe case of “white coat syndrome”? I had to purchase my own bp machine after concerns raised by nurse at gp surgery. Had to monitor for 2 weeks and have readings reviewed. Was found my bp is absolutely normal and no medication required.

Likewise I have had numerous tests due to fast pulse/heart rate. Absolutely no reasons for it so just viewed as an anomaly for me. Personally I think it is in part due to my COPD but the fact is no additional health issues so I don’t worry about it.

Would be worth discussing with gp to see if they have any answers….

Izb1 profile image
Izb1 in reply toBevvy

On one occasion when my doctor took my blood pressure , which was high she then did a manual reading which she said was normal. I now ask if they can do a manual reading as I dont trust the machines. I do suffer from high bp and have a machine at home which seems to give a more reliable reading x

katieoxo60 profile image
katieoxo60 in reply toIzb1

Thank you Izb1, it does not matter who takes mine even myself . This morning I took three the first was abnormal / high, second & third were OK not low just within borderline. Its the same when anyone does it even ambulance drivers, GP, nurse , or my self . I am not sure its white coat syndrome but it highlighted some thing that no one as thought of, faulty machine or the fact the hospital use the same size cuff for every patient. I know I have blood pressure issues its been treated by drugs for many years without success. The heart specialist said every 10 years or so your blood pressure rises a little with age and my mean average is good for my age. It is of course understandable that a new doctor from a different department might be worried I was having a stroke as its not his specialty. So referred for a second opinion in another department. But to have to wait five hours without seeing anyone is stupid, if it was a minor stroke its too late five hours later or someone else might have been dead by then. Not a nice thought. Plus its not good for your mental health either is it or for people with anxiety. I will contact my GP next week concerning this matter as I have another appointment in a fortnight re my knee. Don't want panic stations if my blood pressure is raised do we? Have a nice day stay relaxed and keep your blood pressure down.

Izb1 profile image
Izb1 in reply tokatieoxo60

Totally agree with you Katie. I know when my blood pressure is really high as I can hear it in my ears lol x

katieoxo60 profile image
katieoxo60 in reply toIzb1

More recently I get what I call fuzzy head but not a headache that would make me take a pill, but not sure its from blood pressure. x

Izb1 profile image
Izb1 in reply tokatieoxo60

I know what you mean and have had something like this since having labrynthitis years ago and wonder if its something to do with my ears. I am waiting to see the Maxfac dept re what is bothering me with my eye/ear/teeth and wonder if this is all connected somehow. I think as we get older there can be so many things going wrong, its a mine field lol x

Sarahk1000 profile image
Sarahk1000 in reply tokatieoxo60

Hi KatieA number of people have slightly higher bp readings on the first read and then it lowers slightly. I’m sure I’m not telling you anything new by this but are you resting for 5-10 minutes before taking the first reading? If I take mine even after walking from one room to the next and I take my bp it’s shockingly high for me. Makes me panic which in turn makes my next readings high as well. I have to remember to sit down and rest for a few minutes and then take it which gives a more accurate reading.

Sorry if you didn’t need this information, I’m sure you are quite familiar with this but maybe it would be useful to someone else who reads this.

Sorry to hear of your ordeal. I think we can all appreciate this kind of thing happening over and over again. It makes you not want to reach out for help xx

katieoxo60 profile image
katieoxo60 in reply toSarahk1000

Now SarahK1000, you hit the nail on the head you need to be calm when doing it. My machine tells you not to talk and keep the cuff near to your heart several points the hospital staff should note. Because the doctor was talking to me so I had to reply and sometimes they take mine on the right arm not the left nearest to the heart. Also its done as soon as you get into clinic after much walking , a travel journey and undressing to expose your arm. However I had mine done four times in clinic then three times in MDU during my five hours in there so what do we do. ? At home is similar but not so high on the first try as the hospital result. No simple solution. My freinds goes up at the mention of blood pressure . Maybe like weight too much emphasis on it showing good health , by certain scale guide lines set for the medical proffession. When in fact your norms are a better guide line and often we are the only ones who know our norm. Thank you for reply.

CDPO16 profile image
CDPO16

Hi Katie, I was thinking white coat syndrome too. My husband has this, he can be perfectly relaxed seeing a doctor or nurse for a check up but his blood pressure will be quite high. When he was found out to have high BP his GP arranged for him to have a 24 hour BP monitor to get accurate readings. Long story short he now has medication to control high BP and keeps a check on it at home. It is always within acceptable limits now but still much higher if a nurse or doctor checks it in spite of the medication.As Bevvy suggested, a chat with your GP is probably the next step. I hope you get some explanation for your double vision too. That must be difficult to cope with.

katieoxo60 profile image
katieoxo60 in reply toCDPO16

Thank you will be chasing Gp next week as the neurologist feels the sight problems could be blood pressure orientated.

Troilus profile image
Troilus

Hi Katie. It is a known phenomena that having blood pressure taken in a GP or hospital setting can cause high blood pressure readings. My husband has high blood pressure, but only gets it checked yearly at the GP surgery. He is recommended to check it once in a while at home. There was one time where his readings were higher than usual. The GP told him to take daily readings, record the best of three and submit them to the surgery. The GP rang back and adjusted his medication.

If I were you, I would have a word with your GP. Maybe he runs the same kind of system.

Katinka46 profile image
Katinka46

What a tale. I have massive ‘white-coat-syndrome’ it shoots up in any clinical setting so I try to persuade them to let me do home readings.Look after yourself

Love

Kate xxx

Patk1 profile image
Patk1

Many people have white coat syndrome - no goes up at drs,nurses,hospital

There’s this thing called ‘white coat syndrome’. Maybe the stress of going to the hospital sends your bp up? Looks as though there are several of us who think that 🙂

katieoxo60 profile image
katieoxo60

Thank you for all replies, until recently changed Gp I have been doing my own at home then Gp does an average on the computer for records. When I had my knee done the surgeon was quite happy with this and during my short stay my BP was fine even following surgery. Its so frustrating as you say but sitting in a medical room waiting for it to go down does not work either.

Cazaliza profile image
Cazaliza

Hi my dad experienced double vision after his covid vaccines do you think they are related?

katieoxo60 profile image
katieoxo60 in reply toCazaliza

Now thats a new one on me , but my consultant says its probably to do with my blood pressure , however they say people are getting heart problems with the vaccinne but mainly younger people. I know I have one or two changes since the vaccine, my COPD cough is worse, I have a sour taste in my mouth every morning till I have a drink, double vision bouts, and I get so tired with little work. But some of these could be age or my illnesses taking their toll not necessarily the vaccine. Hope they can help your dad its maybe just one of those things, coinciding with him having the vaccine which vaccinne was it? I've had both Zenica and Phisher for my booster. Has he had his eyes checked , thats why I ended up at the neuroligist but these things can happen as you get older. Sadly my eyesight is getting worse but not too bad all things taken into account. Hope this helps.

Cazaliza profile image
Cazaliza in reply tokatieoxo60

I think he should t have had the phizer with his blood thinners. He swears that he only started getting vision problems after the first one. I have looked on the government site affects data, yellow card reporting and vision is high up in the table. Anyway hope you get it all sorted out x

katieoxo60 profile image
katieoxo60 in reply toCazaliza

Thanks for that Cazalia I did not realise that , will have a look myself. There as been some disputes about how safe certain vaccines are with blood thinners and possible the eyes may be caused by vaccine we don't have enough evidence as such to say if its the vaccine or not. Bit like drugs in the 60s that caused limb deformaties in unborn babies. Let you know if I find any other details whilst looking. Bye for now

Izb1 profile image
Izb1

What a terrible waste of time Katie and so frustrating. I am not surprised you left. At least you have had the tests, you may need to chase these up though x

katieoxo60 profile image
katieoxo60 in reply toIzb1

Very likely x

MoyB profile image
MoyB

I had an issue with blood pressure once which prevented me from participating fully in my pulmonary rehab group.After several weeks, my GP agreed with me that it was 'white coat syndrome' and my BP rises dramatically when someone wants to check it (or in a hospital setting).

Regular home testing showed my BP to be within safe limits for exercise and so my GP gave his blessing.

Could this also be your problem?

Xx Moy

katieoxo60 profile image
katieoxo60 in reply toMoyB

Hi MoyB , that's interesting. I did my pulmonary rehab no problem with a blood pressure issue maybe they changed the rules. It was a heart group I did mine with plus supervision from the pulmonary exercise physio. It was not easy but I managed about 15 weeks., however on retest after exercise I was told there was no change in my breathing capacity. But I felt a little fitter. Have a good day xx

MoyB profile image
MoyB in reply tokatieoxo60

I must admit, I was a bit cross about the PR thing. The ordinary physios were happy to let me continue but the senior physio came in the following week with a different view. I was also experiencing vertigo episodes at the time and he was concerned that I might fall. I tried to explain to him that the kind of vertigo I was experiencing then (due to Menieres Disease) was the kind where I just needed to sit down when it started, and if it continued, a call to my husband meant he would pick me up and take me home. I had never had a fall due to vertigo at that time.

He really didn't want me in the group and wanted me to have someone come to my home instead and help me with my balance. He used the BP issue as an excuse. I was unhappy about it as it would mean missing out on the bits that were important for my lung conditions.

The physios took my side and allowed me to continue but he turned up again and upset the applecart once more.

He wrote to my GP and told him I should be on medication for the BP.

My GP wasn't best pleased at the tone of the letter and overruled him, saying that it was perfectly OK for me to continue with the PR, exercise and all.

I continued and was fine. It just highlights how much professional differences can interfere with our treatment and how we must be prepared to speak up for what we think is right.

I hope things get sorted out for you.

Xx Moy

katieoxo60 profile image
katieoxo60 in reply toMoyB

Sorry to hear it was a conflict of opinion that messed your PR up but at least you got it in the end shame someone made it awkward. I have had a GP response to ring surgery for appointment about Neurology results . Good response don't you think ? Might take a bit longer for appointment with Gp to decide how we go forward. Have a nice day x

MoyB profile image
MoyB in reply tokatieoxo60

A good response indeed. Hope all goes well and you don't have to wait too long for your appointment. Xx Moy

katieoxo60 profile image
katieoxo60 in reply toMoyB

Got a copy in post of the registrars paperwork, and suggestions for management none of it was fulfilled by MDU in the hours I was in there, only one blood test vial taken. Did not notice any paperwork with it. So they did fail the patient anyway I feel better now than I did this morning so time to enjoy whats left of the weekend and see what next week brings. xx

MoyB profile image
MoyB in reply tokatieoxo60

I think it's quite impressive that you got a copy of the registrar's paperwork. Our A&E Dept. has never given me any paperwork or sent me a copy of what's gone to my GP (if anything!). When I've been admitted to a ward I've come home with a discharge summary - that's how I found out I had COPD! It was noted on my summary. When I went to see my GP I asked him about it and had said I didn't have COPD, so I told him to read the summary, which he did. There in very tiny writing, right at the end, it said that I had COPD, so he got me to have a spirometry test and it confirmed it.

I hope you're having a good day and have a lovely day tomorrow. xx Moy

katieoxo60 profile image
katieoxo60 in reply toMoyB

Its a long story due to misdiagnosis past and most recent so new doctors do this for thier safety due to others bad practice in my case xx

Alberta56 profile image
Alberta56

I'm not surprised you left the hospital-what did they expect you to do? I'm another with white coat syndrome. Hope you get some sensible results after all that. xxx

katieoxo60 profile image
katieoxo60 in reply toAlberta56

Me too as far as I know he sent details to the Doctor who referred while I waited in the clinic. I do know who made the referral, too.

katieoxo60 profile image
katieoxo60 in reply toAlberta56

Already got a GPs message to ring surgery concerning this matter. Digital works well in some instances will ring on Monday morning which I was going to do anyway. But sometimes these phonecalls about outcomes can take a while to get an appointment and can end up clashing with something else so fingers crossed.

Suzie42 profile image
Suzie42

Well my blood pressure is always extremely high when I go to gp or hospital. They call it white coat syndrome. Ridiculous for me as worked in hospital for 25 years and while at work blood pressure fine, if I went for gp appt or hosp appt it would rocket. I have home blood pressure machine and always take book with results in to any appointments now.The need to do a 24 hour blood pressure test on you I think.

Hope you get sorted soon x

katieoxo60 profile image
katieoxo60 in reply toSuzie42

Ithink it might have to be a 24hr monitor to send how it goes thank you for reply

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