Hey all..
This is a quick one.
I've just had a call from the doctor as I wanted my results to some bloods I had done 2 weeks ago, my D- Dimer blood test result was abnormal at 870? Surely that's quite high? But I wasn't contacted.
I've been taken off my blood thinners..
It's always been my left leg & now it's in my foot. God help me !
Laura,
That is high but the D dimer isn't 100% reliable as lots of other things can cause it to elevate. Have you had a scan to rule in or out a clot?
The question for your GP is do I actually have a clot and am I at risk at the moment? Get them to document your concerns in your notes as evidence you questioned this.
Thank you Keyes,
Doppler was negative, I'm awaiting a CT scan, I've been experiencing cardiac problems, I've Had a recent Echocardiogram & the only thing that wasn't clear was the stomach to the Aorta. So that's why they've arranged the scan. I've been having pain with the pulse.
I asked my doctor if I had a clot, & do I need to do something about it.
She said not to worry. & to have the test repeated in a weeks time.
I did mention maybe the clot isn't in my leg but somewhere else. I know my neck arteries were checked and was normal. So I did push & she said that a CT scan on my vessels & arteries stomach/aorta to check for AAA.
Laura, the most likely place for a clot to travel to is the lungs so look out for and sudden shortness of breath or chest pains.
I have a dilated aorta ( thoracic not abdominal ) which didn't show up on an echocardiogram. I get yearly scans to check it.
Hopefully after your appt next week all the pieces of the jigsaw will fall into place, I understand the worry of all these symptoms and waiting so long for answers.
Ok Keyes, my breathlessness has been a problem.
My appointment is this Friday :).
Have you.. I've not heard of that. But I'll research. He said everything seemed normal on my echo apart from the not clear part.
I have worried a little but now I just wanna get better.. er 🤗 but yes looking forward to piecing this together at last x
It always starts with my left leg too. I don't think I've had that test - figures.
They never do any tests unless I ask/demand them, so if you don't know to ask...
Hey Lauren
I've had the blood test 3 times in the last well 2 months.
I never heard of it prior.
They said due to my age, I was at low risk of a blood clot. But my doctor agreed to do it after days of deliberation. She Reluctantly went ahead.
Was given blood thinners. For a blood clot. The first time but this time I wasn't aware of how high my levels were..
So the 870 was a shock!
Your right if you don't ask you won't get.
I have been tested from head to foot for clots both times when the leg thing happened, and recently when I somehow was poisoned with organofosphates (of all things) and had a stroke because of it. No clots at all.
I have been trying to gain access to my records on their stupid portal since it was like pulling teeth to get any information from them at that Mexican prison cum hospital. Maybe they did that test, but probably not. Sigh.
Mexican ? Where are you in the world ?
What is organofosphates ? Sounds scary !
I've had TIA- Mini stroke due to my clot.
I've tried to get my records too it's like waiting for a chocolate kettle to boil! Impossible....
Organophosphates are in rather poisons and fertilizer, etc. I was exposed somehow. The poison raised my blood pressure through the roof And blue out a small blood vessel in my right Basel ganglia. The hospital they took me to was a shit show. I told the whole story on Yelp - I'm Lauren W on their - the hospital, which is in Boston (I'm in Cape Cod), was like a Mexican prison it was so bad.
Nobody would tell me test results, or give me printed records. They said look at the portal but they never gave me info or codes to access it. They super suck.
Stupid spell check - oh well - you get the gist I hope 😬
Hi Sherry Addenbrookes in Cambridge has good specialist consultants. You must find this is true in the US too that there are some places which are particularly good. Sadly the NHS in U.K. is creaking at the seams. A lot of doctors and nurses seem to be demotivated which is not exactly conducive to doing a good job. The trouble is no one seems to hold any responsibility for anything nowadays. I put it down to bad management!
Hi Sherry,
There are quite a few multi disciplinary Vasculitis clinics in the U.K. and other satellites where patients receive excellent treatment. Addenbrookes is mentioned a lot on here as it is the biggest clinic in the U.K. and the Consultant in charge is arguably the world expert on ANCA associated Vasculitis in particular.
As you work in the health service I am sure you understand that care can be a postcode lottery wherever you are, especially so with rare disease. Patients from all over the world look at our website, diagnostic problems are not only confined to the UK.
The NHS is still free at the point of use and once patients get a diagnosis and find the right specialist the treatment is usually excellent with access to biologic drugs if required.
I don't think I was being defensive, just explaining the UK healthcare system and Addenbrookes place in Vasculitis care.
With respect you weren't just asking what it was. You made a number of statements including that it appears everyone ends up at Addenbrookes, that people needed to scream and jump up and down to get things done and implied the care was " unbelievable ".
Hi Sherry, of course UK is a lot smaller than the US so there are probably fewer centres of excellence.
Our health insurance is based on our National Health Service - NHS, anyone rich or poor can have free health service they just turn up. That is not the case for dental treatment and eye tests though. Also drugs are normally paid for at a fixed price irrespective of the cost. Some people get them free e.g children, older people, people with some chronic diseases. The problem is the NHS is on its knees, it is a monolith with a lack of funding and in my opinion bad management. It is the largest employer in the world with the exception of the Chinese Red Army and the Indian Railway system.
In U.K. you can also pay private health insurance, with lots of options of what you can get. The big advantage is you jump the queue. Also you can just pay cash for a consultation, X-ray, operation, drugs etc.
The NHS recently has been trying to save money in some areas by saying if you need a new knee or hip for example you cannot have it if you smoke or are overweight. This means a lot of people will go privately and pay. Thus solving the problem. They are always dreaming up ideas of saving money. A lot of cancer drugs for example cannot be got through the NHS so some people may have to pay thousands of pounds to obtain them privately.
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